Carver's Blog

the BEST birthday party ever

2010-12-05T21:53:00.000-08:00

I trusted my motherly instincts and went a little non-traditional on the party this year. We narrowed the list to just 5 boys, which means I still feel a little guilty we didn't invite any friends from school and not even all the friends from church. But Carver likes small groups and it's HIS birthday!! We went to the fire station and it was PERFECT. He loved it, the boys loved it, I loved that it was free and SO COOL and just the right amount of time. We came home for cookies and ice cream and a quick little game climbing our ladder and dropping bean bags in a box. I know, I went all out on that one. :) But they all loved it. How often do they actually get to climb the ladder at home?! Carver doesn't, that's for sure. Sometimes it takes guts to do things on Carver's terms and not feel pressured into doing things the way others do them. But it feels so good when you get it right!!

Updates, updates

2010-10-31T21:17:00.002-07:00

Preschool is fantastic this year. Smaller class, more impressive curriculum AND they are helping him potty-train. And it's WORKING. I changed one small, insignificant stinky diaper this week. It's going that well. It's a miracle. Really and truly. Twice this week, he even told us he needed to go. WOW!

We're so sad to say good-bye to Carver's fantastic SLP, but our health insurance has changed and we've got to go where there are low co-pays and 90 visits a year. The entire benefits package is more expensive than before, but speech is a HUGE blessing. We were fortunate enough to skip a long waiting list and get in right away at a therapy center closer to home. For some reason, this whole change got me all emotional saying good-bye and that's just CRAZY. I don't cry when school ends, even when I love teachers for my girls. We've had some excellent teachers over the years, so I'm guessing that my strange emotional over-reaction is connected to the gratitude I feel to these special people who make such a difference in Carver's life. How embarrassing to cry, but what are you gonna do?! We have one more week and then we're switching over. I'm crossing my fingers we like this new SLP as much!

Dentist

2010-09-25T20:20:00.001-07:00

I've been putting off this appointment for years. But since little sister was ready, I decided to try the 2-for-1 approach. She did AMAZINGLY well (which is good and bad as we'll see). She wanted to be first, the dental assistant was wonderful to explain every step and make it fun, she ate up all the attention and let her polish and do flouride and even x-rays. And she's barely 3.

Then we switched and the assistant mistook Carver's size for being more advanced, went right to x-rays and didn't sugar coat it. We spent 10-15 minutes fighting him to hold perfectly still (only happens during a movie if his thumb is in his mouth) and got several very poor pictures of the ends of his teeth. This not only used up all of sister's patience, but all of Carver's. He wouldn't do anything after that. Except spray the water tool. On the station tray and, at the very end, on the window. He was putting the fire out, of course. :)

The blow by blow story is really secondary to the fundamental problems this experience highlighted again.

His sister is passing him up, despite being half his size. I shouldn't have taken them together and set us up for inevitable comparisons.

I really thought I'd talked to the dentist about Carver. But it occurred to me after that I thought we were seeing a hygienist, who knew about Carver, and instead we saw an assistant who didn't have a clue. And didn't pick up on the clues very readily. It wasn't fair to them or Carver or me. But I didn't mean to let that happen. Honestly, how am I supposed to know exactly how he'll react to a new experience? I don't. I do the best I can and then we'll know better for next time.

Hopefully he'll forget and next time we'll go just the two of us to my favorite hygienist and we'll go nice and slow.

And hopefully I WON'T forget and I'll remember to educate everyone as much as possible just in case.

new hurdles

2010-05-24T13:36:00.000-07:00

I've made peace with our preschool situation. I'm grateful we have what we do, even if it's not everything I'd like. I'm trying so hard to step up and supplement more at home, which is what I BELIEVE in. It's just easier said than done. We're just a couple weeks from the end of the year and then I'm hoping like crazy that I can use the summer to find a good routine for practicing speech, counting and ABC's at home.

Meanwhile, this weekend we got a letter from our insurance company telling us that they denied our request for more therapy visits. Here's how it works - we get 30 visits per calendar year per individual. These visits include speech therapy, occupational therapy, physical therapy, any kind of behavioral therapy, etc... Just 30 a year - not even once a week. We requested more, which is the first step (and hopefully the only one necessary). They said we couldn't have more visits. Now we face an appeals process that could take 6 months if we have to go through all 3 levels. They continue to pay once you start the appeal process but they will ask for the money back if they never approve.

Carver goes to speech 2x/week and we've elected not to do any other therapy for the sake of time, sanity and money. Really, his speech is his most noticeable delay. Besides not being potty trained or knowing how to ride a bike, etc... but those things don't show quite as often. :)

If insurance doesn't cover therapy, we're looking at around $200 a week in therapy costs. Or we could scale back to $85-100/week if we go down to one day. Obviously, this is a significant cost. And a huge dilemma. How can we NOT get the help we need for Carver? But how can we justify so much money out of pocket? Where will it come from? Is it worth draining our savings account for a few years of speech therapy? These are hard questions.

First step - write to the insurance company. They wrote:

"This benefit restriction is not a determination of medical necessity. This denial is for payment purposes only. if you choose to receive the service, you will need to assume the cost."

Does this mean they don't care that therapy is medically necessary? Is that really irrelevant? How can health insurance deny medically necessary treatment? How are we supposed to get the care we need in a medical system built around the concept of insurance if the insurance won't participate? It's incredibly frustrating.

And so I'm incredibly frustrated. Disappointed. Overwhelmed. Discouraged.

A heaping dose of perspective

2010-02-26T16:55:00.000-08:00

Today I took Carver (and his 2 year old sister) to chat with the teacher of a local preschool, run by a Lutheran church in the area. The website, their blog, my emails with the coordinator had all been very impressive. I figured it was worth a shot. I needed to know if I had other options, rather than the developmental preschool he's at.

Fridays are generally hard for the 3 of us. We are all tired and we usually spend the morning at home so I can clean, which makes everyone a little cranky. We headed over there before lunchtime just to add "hungry" to the mix.

It was a typical preschool classroom and she seemed very nice. My emotions have been close to the surface all week, I've been literally losing sleep at night worrying about this. I was perhaps not in the best frame of mind to have this meeting. The kids were trying to ransack the toys while I discussed Carver and heard about their program. Within a few minutes, I realized that this was not going to be an option for him and wanted to get out of there ASAP. I wish now that I would've found a way to do just that. Instead, I chased the kids around the room and cleaned up all the stuff they got out, while trying to concentrate on the sweet preschool teacher voice telling me he seemed like a typical preschooler, excited about a new place. Her words were all kind, but the look in her eyes revealed the feeling of "he's a handful, she's crazy to consider this." But, in all fairness, I was so caught up in my own flood of emotions that this might be totally off. Less than 5 minutes into it, I realized tears were coming. I prayed and prayed that I could hold them off to the drive home. But that was not to be. She had to console me, offer me tissues, for crying out loud. That's when she told me about their routine and program and I really knew this would never work. 18 kids, 2 teachers, circle time, letter tracing, art, all good things. But she reminded him maybe 5 times that the neat little house was just a reading place and not for toys. 3 times she reminded him not to go out the back door. Twice he got himself a drink with a cup without asking. 2 seconds for me to imagine their "sensory table" of water/rice spilled all over the floor if Carver played there. She didn't say no. She said we'd have lots of communication, that we'd need a few weeks as a trial to see how he interacts with the class and that I might need to stay with him, as they'd done before with a special needs boy. Clearly not an option for me and his little sister, not to mention the hurt if it didn't work out and the challenges with that.

I cried more in the car, more at home, more on the phone to my sweet husband, more to my poor neighbor, more at home, while I tried to take a mini-nap with Carver. It's been one of those days.

It was crazy to consider a typical preschool, of course. I should've known that. It's brought to the forefront all my worries about kindergarten. Which I do NOT need right now. It also made me extremely grateful that we have a developmental preschool at all, poor parent-teacher communication and all. And that alone is probably worth all the tears.

Help wanted

2010-02-23T20:47:00.000-08:00

When Carver’s 2 older sisters were preschool age, I developed a sense of educational self-reliance and belief that teaching is most effective at home. My feelings about preschool are complicated, but the foundation that I always return to is simple: preschool is a helpful social experience that prepares children for a classroom environment. And that’s it. Neither of my girls learned anything in preschool that they didn’t already learn at home. As they progress into elementary school, they gradually begin to be introduced to new concepts and I’m the helper instead of the main teacher. It’s worked for them. It’s worked for me.

So Carver is not fitting this mold at all. I flounder to provide all the sensory input he’d like (which is roughly as much as is humanly possible to dish out) and he isn’t hungry at ALL for preschool “curriculum,” unlike his sisters who soaked it all up. Counting, letters and shapes have come and gone with his interest level. It is incredibly discouraging to see those regressions. And baffling, too.

I have the same motherly desire to do it all, be Carver’s primary teacher and therapist. At the same time, I feel so hopelessly ill-equipped for that role. It is a sticky place to be. I know that raising and teaching a child with special needs requires a team of specialists, with me to hold all the pieces together. Where do you find all the help necessary? That is the hardest part.

We found a fabulous speech therapist who has helped Carver tremendously. I’m impressed with how she pushes him each week, building on what he can do and stretching him just enough. I hear more articles, more complete sentences and more articulation all the time. He works SO hard for her! And when I try to get him to practice at home, I get “No, no, no – Jennifer’s office.” That is clearly the place he associates with that level of effort! And it is SO MUCH WORK for him. You can’t imagine how he watches my mouth, labors with his own to try to make the same sounds that come out so naturally for the rest of us. He just has to work for every sound.

Carver’s preschool is a disappointment. Last year he THRIVED. He came home happy and it was clear that he was learning routines and academics with adults who connected with him. It’s not happening this year. I don’t know what happened. All new teachers came in and it’s just not the same. In all fairness, we do have a few excellent therapists and assistants there. And I believe that everyone is trying hard. But it’s a government funded program, required by law to provide a minimum level of “services” and I feel like we get the minimum services required and nothing more. But what are my other choices? VERY expensive preschools with waiting lists in other cities. What’s a mom to do? I come back to my foundational belief that preschool is just a great social training opportunity… and yet somehow that’s not matching up with Carver’s needs. I have to admit that I need help teaching him colors and letters and all that good stuff. Either I need to find new team members to help me in his education (but WHERE?!) or I’m left to prepare him on my own for kindergarten. And that last option feels like a huge burden indeed.

Just the good stuff

2010-01-21T20:47:00.000-08:00

Carver cracks me up. He wanted to be like Daddy after his bath and kept making "gang" signs. Then he wanted to see himself standing on our bathroom counter. cute, cute.

Carver is OBSESSED with gum and fruitsnacks (only Tree Top brand from Costco, though). Speaking of Costco... last time, he was watching a car chase scene from some adult-type movie: "Car moving... CRASH!" Of course, he loved it. Big sis was freaking out that Carver was watching a scary movie and he was in heaven. Another highlight of the trip was seeing a forklift up close. He wanted to stay and watch it. We follow it sometimes. :)

Routine is helping a lot. Mostly it's in pieces like "lunch-movie-school bus" and typical bedtime routines. I've been trying to run errands right when we drop the girls off at the bus stop since it follows the same pattern as speech or swimming days. I think it helps. It doesn't break up the morning as well, but it's worth the routine.

Have I mentioned that we are crazy busy? Speech is Mon/Tues and it pretty much takes the whole morning (but it absolutely worth every minute of the drive). Swimming lessons are Wednesday mornings and a little bit closer/shorter. Today the morning felt so LONG. It's weird to be home so long. Nice, too! :)

We're getting back to swinging almost every day outside. The weather has been fabulous this winter, which helps a LOT. I think it's time for me to suck it up and take them on a "wander" down the trail as much as I can. If you don't think about like a regular walk, it's not so frustrating.

Carver is the king of burps. I don't know how he can have such control and force! They are HUGE. And I'm pretty sure he's passing gas on demand when I'm drying him after a bath. What a BOY! Those are also the little clues to me that we will someday potty train him. That's an exciting feeling! :)

Carver loves to be tickled. Especially on his armpits. Today I got him to practice some speech words with the promise that if he's say "tuh-tuh-tuh" I'd tickle him again. It was MAGIC!

He ADORES his plastic tools. He uses them on boxes we'd ordinarily recycle and fixes the play fridge a lot. Something about those pipes just isn't right! He loves to be a worker, see workers and be a fixer. It is always motivating to him if I ask him to bring his strong muscles and do a special job.

OH!!! Carver has been SO afraid of bounce houses. He's sure they are going to pop and he doesn't like the noise they make. But we went to a friend's birthday party at a bounce place and he finally conquered his fear and LOVED it. It is a perfect fit for his sensory needs and I'm excited that we'll be able to do drop-in times now and then for him. He also got brave at a restaurant after the bounce house success and wanted a balloon. Wow! He's really growing up.

Going Private

2009-12-27T22:11:00.000-08:00

Not the blog - just speech therapy. :)

We finished a two part evaluation with a speech language pathologist (SLP) about 35 minutes from home and so far, I really like her. Carver is excited to go, cooperates as well as could be expected. The first visit was really great as far as behavior goes. I was so impressed with how well he sat and said words for her. :) But he's starting to learn where the toys are and is anxious to try them all. She gave us a detailed evaluation that I'll try to include details from later. But the long and short of it is that she recommended talking to the school about upping his therapy time there and probably going to twice weekly therapy with her. It seems on track to me because he certainly needs the time and practice. A couple of the interesting things I learned so far:

Carver has the physical capability to make the sounds for words, just not the muscle control to plan and execute them on demand. All the age appropriate sounds are there. Even L.

He can move his tongue up and make a clicking sound on the roof of his mouth, but if you ask him to touch his tongue to his top teeth, even with a mirror and example - he can't do it. It's a perfect example of his lack of motor planning ability.

He has a hard time with words that switch position in the mouth. "Muddy" ends up sounding like "Muu-ee" or "munny." "Gate" or "Kite" are tricky because it shifts from the throat to the teeth.

Making sounds in a row on purpose is hard. Sequencing is a challenge for sure.

I'm encouraged. I'll be able to listen to books on tape to and from speech... :) Okay, maybe not. It's a great time to practice conversations with Carver. So far, I need to leave Grace at home. Hopefully we'll be able to work up to taking her with me. I don't want to use all my babysitting swaps in one place!

Wake-up call

2009-12-07T20:39:00.000-08:00

Lately, I've faced a lot of reality. I exchanged emails with Carver's preschool teacher and SLP -a speech language pathologist, formerly known as a "speech therapist." :) It turns out Carver's not speaking much at school. I had figured that his IEPs and progress reports reflected his ability to perform in structured, formal testing situations and didn't worry too much about the low age equivalencies given. But I wanted to be sure. I was really surprised to find out that he's NOT talking at school. Strings of 3 words at BEST. Mostly single-word utterances. WHAT?! He's talking volumes at home. Granted, articulation is a major hurdle. But he's not letting that stop him. He speaks in paragraphs at home, disjointed sentences strung together with semi-colons or ellipses. So this is a major discrepancy. And it has me concerned for MANY reasons:

1. How can speech therapy be effective at school if he's not talking?

2. Why isn't he comfortable enough at school to talk? He used to talk up a storm at school - last year, different classroom, different teacher and therapist. What's happened?

3. I can't count on the school system. I've been coasting and it's time to get back in the driver's seat.

4. The clock is ticking and we're just under 2 years away from kindergarten. I'm kicking myself for wasting so much time.

SO... I'm diving into the search for a private speech therapist. I'd been on a waiting list and didn't know what else to do. Now we've been accepted to the local therapy center, but I'm not just taking whoever I get. Next Monday we meet with the first recommendation from my pediatrician. (HELLO?! Why didn't I ask him sooner? He's fabulous and knows an awful lot more than I realize.) I'm willing to drive about 30 minutes for therapy, the local place is 15 minutes. I'm hoping we're looking at every week. I've resisted the cost ($25 co-pay each visit), but how can I NOT do it?

But more importantly, it's good for me to have these moments where I get myself back on track at being Carver's #1 advocate. It's exhausting to worry all the time about him, to be constantly teaching and coaching him. I have 3 other kids, laundry, dishes, meals, church responsibilities, a husband and so many more parts to my life. It's a sticky balance between feeling guilty that I'm NOT doing more for Carver and letting myself relax to the point that I'm not doing much at all.

Whew. Add to all that the fact that I keep looking at my sweet 4 year old and wondering when he'll use the toilet and I want to throw in the towel completely!

Lesson #5: A Boy and His Thumb

2009-11-05T14:26:00.001-08:00

Once upon a time there was a baby boy of squishy leg rolls and chubby cheeks. His mother gave him a pacifier when he cried, to soothe him to sleep. He loved his pacifier and began to call it his "yum-yum." This mother liked the yum-yum because it calmed him down when he was frustrated, which was often. And she liked that it was something they could eventually wean him of. They were a family rich in yum-yums, hidden in many places around the house and used for bedtime, car rides, movies, and late afternoon grumpies.

Then one day, this baby boy grew up into a preschooler. And his mom decided that it was a good time to say good-bye to the yum-yum. He missed it, but learned to sleep without it. They coped with disappointments and frustrations without it's help. But he wasn't ready to give up the soothing feeling of something in his mouth. They tried gum and a chewy tube, but they weren't the same at all. At long last he found the perfect thing for his mouth - his thumb. His mom didn't think it was perfect at all. How would she ever help him stop?

As I wrote this little tale, I realized again how much of it is about ME rather than CARVER. Interesting. I am a control-freak of various degrees and naturally like the security of pacifiers, that I get to choose when it's used and where it hides, when it's time to outgrow it. I'd asked some of Carver's OTs and SLPs and gotten recommendations to take away the yum-yum, but ultimately it was my choice. And he wasn't ready at all. He may have learned to sleep without it, but he wasn't ready to LIVE his life without it. I resisted that thumb, but in the end realized that it was my own fault for taking the yum-yum away too soon.

Then I made an even greater realization: Carver needs his thumb and that's OKAY. It's not my issue, it's his. I've even learned that it's a wonderful thing that Carver gets to choose when and when not to suck on his thumb. I see patterns - when he watches movies or listens to books, when he rides in the car or sits at church, when I tickle him, when I snapped at him this morning from the shower because he was playing in my jewelry box after I JUST told him not do. He sleeps with the yum-yum because it is still his favorite, but he doesn't get it any other time and he doesn't mind at all. He is learning to self soothe and that's an important skill for anyone. He won't suck his thumb his whole life - at least not in public, right? :)

So the lesson of the day is to accept your kids as they are. I never wanted a thumb-sucking child. EVER. But Carver needs his thumb and I take him as he is. We don't get to choose what our children like and don't like. We don't get to choose their personalities or sense of humor. I am learning to let go of my control issues, to honor my children's individuality and even let my 8 year old part her own hair.

Vision Therapy?!

2009-10-20T15:07:00.000-07:00

Okay, I've been slacking. I'll have to talk about IEP's later, but this story needs a bit of a preface. At our IEP meeting a couple weeks ago, Carver's OT suggested we consider having him evaluated for vision therapy. She works with his fine motor skills and one day used kidney beans as part of their therapy. One fell on the floor and he tried to pick it up, but instead of grabbing the bean, he fixated on a red stain on the carpet and repeatedly tried to pick THAT up. So she started wondering about depth perception, etc.... I loved that she was thinking about the whole picture, considering how we might help him. I welcomed the suggestion. She gave me a few places to try and I set up a free screening for today at place in Bellevue with a certain Dr. (OD). I have to admit I was a bit skeptical going in. Vision therapy isn't exactly mainstream and I'm mostly a mainstream kinda girl. I'm going to try to be fair to him as best I can, but when I can't help myself, I'll switch to italics.

It was in a nice enough office in a medical part of town, near the hospital. The staff was friendly, there were toys, the doctor was exceptionally friendly. He asked questions, looked at Carver's eyes with lights, watched how he "tracked" a ball on a stick. Or, in Carver's case, how he did NOT "track" the ball on a stick. The dr. turns to me and says, "this is huge. see how he can't even follow the movement of the ball?"

Hmmm... my skepticism is growing by the minute. The room is fascinating, full of crazy optometry equipment, a video screen, files, books, computers, monitors, chairs, lights, the whole gammet. Everything I've read on SPD tells that in such a stimulating environment, they have a hard time focusing.

He asks him to name things on the screen, which Carver can do. He puts special lenses over Carver's eyes, follows them with a light and determines that his vision is unimpaired. I figured as much. But he also said that Carver has a hard time focusing on things up close (bringing his eyes together) and probably sees double. I think he ascertained that from the two tries he gave him to look at that same little ball on a stick. But the dr was between me and Carver and I'm not exactly sure where that conclusion stems from. The doctor demonstrated for me what it might be like to look at a written page and see double (not that I couldn't imagine this.)

He asked about our insurance, who it's through. I told him Blue Cross and he said, but what company? I told him Derek's employer and he said confidently, "oh, then it'll be fine."

What?! It's a small company. How does he know? Weird.

He kept pressing me to say that Carver doesn't want to look at books, that he prefers to do other things. But Carver loves to be read to. He asks questions, points to things, wiggles around on the couch like crazy - yes. But books haven't been an issue for him in a long time.

So he recommended an addition full evaluation ($290 out of pocket) and then personalized vision therapy. They'd look into insurance costs for us for that. I asked him what vision therapy might look like for Carver. He said that they do a lot of it at home now, downloading therapy homework on the computer and then submitting it back to the office. We don't have to come in all the time.

HELLO! Carver is 4!! He can't use utensils or pencils with consistency. He's supposed to do homework on the computer!?!?

Also, they do pictures that they can only see one part at a time without using both eyes together, using games and whatnot. That made more sense, but it's still pretty nonspecific.

He said a lot of crazy stuff that I won't be able to remember accurately. Here's the gist, without any of my commentary thrown in, I promise. He's been doing this for 40 years and can always figure out what is going on with kids. If he just thinks about it long enough, he can find the reason for their behavior. Sensory motor processing issues (he called it something like that) is really just that the kids are stuck at a lower form of development and they haven't reached vision yet (since it generally comes later in the developmental process). If you do vision therapy, it'll fix all the other stuff because essentially it'll fix his SPD. He gave the example of sitting on his stool. He relies on vision to keep himself there, but if you're wiggling all around to find the edges of the stool and understand gravity, that's just socially unacceptable. It's not wrong, these kids are born obnoxious, they just need to be taught to use vision to understand the world instead of their tactile senses. He recently went to a workshop where someone taught him that speech is related to our thought process because it's like talking in your head! (He said this was great enthusiasm, certain that he was enlightening me on this point, as well.) Vision is integral to this process. I'm still unclear how he connected that. Oh - maybe it was because if we could see what was really going on around us, we'd be able to communicate about it. I think that was it. On our way out, he asked about Carver's eating and said that we crave what we're allergic to and we should really consider switching to soy or eliminated wheat if that's what he likes. Talk about random, although food issues aren't to be ruled out. I just didn't think OD's were nutrionists or gastroenterologists. I asked how attention span played into it and I think he said that vision therapy would help him focus on things longer, that his behavior would drastically improve.

WHOA. I don't know what to say to all that!! Seriously?! He downplayed the importance of language, assured me that vision therapy fixes SPD because we just need to give Carver a new way of gaining information. It was absolutely crazy. I've NEVER met a doctor so completely uneducated in SPD - EVER. It was mind boggling.

Even with all my inward rantings and my outward struggles not to look at him like he's crazy while he's talking to me, I think there could be a grain of truth mixed in all of that mumbo-jumbo. I get the idea that helping Carver focus and track things with his eyes would help his ability to do fine motor skills. It might even help him learn to take in his environment in a more organized, controlled way. But we are not going back there. I'll look into another place or two and see what comes of it. Sheesh! What a waste of time. At least it was free.

Dr. Glass, pediatric neurologist - Part 1

2009-09-10T20:33:00.000-07:00

Okay, I'm starting to get paranoid that I'm going to forget stuff and then I'll get the paperwork and he won't have mentioned things I cared about. I just like to worry. I'll fill in the holes later.

We talked about Carver's basic history, timeline.

We talked about how we handle temper tantrums - how often, what they are about, etc... He recommended using parental "mechanical arms" to restrain Carver during a tantrum and using the words "I know you are upset. When you are ready, we'll play/go back/finish up." No arm rubbing, no pacifier, no calming words or rocking. The point is that he learns to calm HIMSELF and I really like that. I've already started using it and I feel so much more in control because it's NOT in my control anymore, if that makes sense. I don't have to figure out how to talk him out of the tantrum because that's not my job. Good feeling. He said that essentially, we don't want to rescue him from his frustration/tantrum and send a message that he can't do it by himself, that he needs us to do it.

(I've been trying to give him LOTS of opportunities to do things himself because it builds self confidence and besides, it keeps him happy. Nothing as fun as moving garbage cans on garbage day!)

Also, tantrums may start out about something in particular and then turn into "mad because I'm mad" and certainly they feel remorse for anything they did when they lost control. And it's a definite loss of control. He recently hit a friend when he was upset about the friend needing to go home and I knew he felt bad afterwards, but he didn't really mean to. I guess he did because he aimed and everything, but it was such an impulsive action that it wasn't intended. It must be terribly frustrating to not know how to handle negative emotions.

I loved what Dr. Glass said about temper tantrums. Carver learns throught them. It might be appealing to avoid them, to give in to what he wants. But it doesn't teach him anything. It's in learning to manage that anger and disappointment that he makes progress. Great perspective.

On a related not, he said that kids learn more from watching how other kids are disciplined and treated than how they themselves are disciplined. So as we respond to Grace can teach Carver powerful lessons. And vice versa. Which should help with some of her imitations of his less appropriate behaviors. Interesting to consider. AND praise is nice, but what you hear people say about you to another matters the most. I think that's true of adults, too, and the reason gossip is so destructive.

We talked about quiet times. I confessed that I lock him in his room every day for quiet time, he cries and usually falls asleep on his bed. He was a HUGE fan of this (whew!) and said that kids need more downtime, especially after a long day at school. He said 30 minutes of screen time can really work, as well, so long as it really ends at 30 minutes. The fact that Carver is often climbing in his bed and going to sleep is also a good sign because he's listening to his body and solving his own problem. Usually I hear him play for a minute or two and yesterday he only played, but honestly - it's 4:30 by the time we're back from the bus stop and finished with our quick snack. He's exhausted. And it gives me a chance to decompress school with the girls - do homework, review backpacks, hear their important news.

We talked about his anxiety the night before and he said it was absolutely related. So is Carver's recent sleep walking. He said night terrors are common, too.

Basically, Sensory Processing Disorder is broken down into 3 parts.

1 - AROUSAL:

A normal state of arousal varies between a lower level (think of someone easily distracted at a cocktail party, talks to lots of people, doesn't concentrate on one thing at a time, doesn't maintain good eye contact) and a high level (think of someone that walks into that same cocktail party and immediately observes what everyone is wearing, how the furniture is arranged, where the food is, where the exit is, who is talking to whom and probably doesn't even want to be there. Also more likely to have good eye contact in conversation). Derek and I are on that end! :)

Beyond that lower end of normal you have ADHD. They have such low levels of arousal that they have a hard time functioning because they are so neurologically drowsy. Stimulants bring them up into the normal range. I'm guessing that it's distracting to be so under aroused, maybe the world seems abrupt and hard to figure out?

Above the high end of normal, you get SPD and beyond that is the Autism Spectrum. So SPD, whether over-sensitive or under-sensitive is a higher state of neurological arousal. It's complicated because there are all these overlapping issues, right? Definitely! Carver's always so tuned into what's going on around him - the sounds and sights - that he just wants to touch it all, be a part of it all. (Other kids might be trying to avoid all those things.) We try to calm him with sensory therapy to offset that over-arousal. It's hard to focus on filling out all those school emergency forms if your kids are pulling at you, the oven is beeping and it's a really hot day. That's the feeling of over-arousal.

2 - SENSORY ISSUES

Carver is over sensitive to sounds. He is scared of thunder, garbage trucks, sudden applause, yelling children, etc... He is under sensative to touch and oral sensations. He craves things in his mouth (gum, yum-yum, toys, crocs! and strings - food, too!) He also seeks physical touch, swinging, crashing into stuff, my arms, hair, etc...

3 - ANXIETY

It's not hard to imagine that a world like Carver's is overwhelming. That's why routine is so important, why it helps keep things in order. Disruptions to his routine are often causes of tantrums. Dad had to go help with a move instead of finish our family bike ride. A sudden change of plans is very difficult. Or giving stuff to people, things he's gotten to associate as part of his life. For example - the zucchini. Dr. Glass said that while he may not like zucchini, he's realizing where it fits in his life. It grows in the backyard, we cut it off, put it on the counter. When I give it to a neighbor, it's distrupted from our regular routine. I'm thinking that if the regular routine was to wrap it up and take it to someone, that would be no problem. Unforunately, life is full of unexpected events. I can't really avoid all of them.

I think he said that we treat the sensory needs to help regulate his over-arousal. Swinging and crashing, tickling and spinning in a chair gives good steady sensory input to minimize the "cravings" and give him a feeling of order and balance to accomplish other tasks.

We also talked about his dyspraxia or apraxia. He rated him about a 7 1/2 on a scale from 0-10, 0 being no dyspraxia and 10 being most severe. Carver really didn't talk much for him, so I might bring that down a notch. Still, it was a good reminder that his delays are significant. He recommended speech therapy in addition to what he gets at school. The wait list is probably til around January at Children's Therapy Center but we're on it just the same. I might see if I can find another place to go, although if we stick with CTC, it makes my appointments with Dr. Glass more legitimate (we got to see him because our previous therapist pulled some strings).

He talked about language (grammar, usage, etc...) as a wall and how delays are like bricks missing from the wall. You can add them in later, but those holes affect ability to communicate effectively. He said that often with dyspraxia there are language holes. It is hard to know which came first, but there are clearly gaps in what Carver understands and communicates. We're filling them in, though, little by little.

He thought that we'd be better off tackling rumination later when Carver has more language skills.

I asked about potty training, if I can wait for the same signs of readiness of typically developing kids and he said yes. He will get there and in the meantime, make it a non issue. That's hard, but I've been trying already. I'm sure our pressure on him relates to his withholding issues right now. It'll be awhile. He recommended TRIPLE underwear when we're ready or undies under the pull-up. Maybe NEXT summer? :)

His wife does behavior counseling and he is going to give us her contact information. I guess she is one of the few in the area to meet with families and help them tackle behavioral issues. I mentioned that I was on the OT list because I wanted more help with those sorts of things. Really, he doesn't think that OT is as important as developing language skills. And OT wouldn't solve all those issues. I'm curious to see what his wife does.

He warned that reading might be hard, but that's hard to predict. He thought that writing would definitely be a challenge. I'm so mature I'll worry about that later.... Okay, okay - I am so full of present day worries, I don't have room for those!!

He listed a bunch of qualities that these kids have, here's the few I can remember:

charming
kind
empathetic
inflexible

He was right on the money. Carver is really delightful. And exactly like that poem about the girl with the curl in the middle of her forehead -

when she was good, she was very very good and when she was bad, she was horrid.

He played with Carver, talked about flashcards:

"what's this?"
tree
"what falls out of a tree?"
people
"people fall out of a tree?"
yes
"what goes on the ground under the tree?"
people

okay.... moving on....

"what's this?"
sun
"is the sun hot or cold"
cold
"the sun is COLD?"
giggles, yeah
"Carver, is the sun hot or cold?"
cold

Hmmm... I think these illustrates the kind of language gaps that we're dealing with. Sometimes I wonder if Carver thought it was a game to tease Dr. Glass, but really he answers crazy like that to all sorts of things.

He had him push the button on a small measuring tape with his pointer - Carver LOVED that game because Dr. Glass made a funny sound and zipped it back up. I also think Carver laughed and laughed in part because he was SOOO tired and because it was a release from the anxiety of being in this small room with only a few toys and 3 adults talking about him. It was adorable.

He checked reflexes, looked in his eyes and mouth. Carver loved that little hammer. He had him chase the measuring tape down the hall and as soon as he brushed next to him, he dashed off to another classroom. A constant challenge for me, too.

He said that SPD kids really respond to reaction. Facial expressions, tone of voice, body language. They are super receptive. Keeping a blank face can really help "win" battles. I think Carver feels like he wins when he gets any reaction at all -positive or negative. Unfortunately, he wins all the time around here!

I wish I'd asked about flax seed oil. Anyone know what he thinks of that sort of thing?

Okay, that is a lot of stuff. And really, I'm SURE I left out more. 90 minutes is a long conversation. But I'm worn out....I bet you are, too! More later when I have those doctor notes.

Back to Preschool 2009

2009-09-08T21:53:00.000-07:00

HURRAY! The day we've been waiting for has come. And oh - what a day. What a night before the big day...

We told Carver last night that we were taking him to a doctor in the morning, then play with Grace, eat lunch and hop on the bus to school. It's kinda routine to go through these main events ahead of time. I also use a velcro strip and pictures on the fridge to illustrate each day, at least SOME days. :) Anyway, he went to bed okay but woke up sometime... (Daddy got him first, I'm a little slower to hear things at night) and he tossed and turned and whimpered for hours. He didn't have a fever, his cold is gone, his stomach wasn't making churning noises. He just couldn't sleep. Sometimes he said that something hurt, but it wasn't clear if anything really did. We did drinks of water, a change of pjs and took turns sleeping in his bed. He seemed to calm down when we talked to each other, rubbed his arms and back and head. I began to believe that he wanted to sleep but couldn't - that he had anxiety about today. And I still believe that.

He'd asked questions about the doctor - "look tummy?" No, not this time. "Look ears?" Nope. I didn't know how to explain pediatric neurology to him. Guess I should've thought of that sooner. He asked if the doctor was nice and I had assured him he was. Daddy was coming, too, which probably triggered something unusual to him. Also, it was his first day with a new preschool teacher and the room hadn't been set up completely at the open house. It was new and different, even though we'd done it before. Preschool was after lunch instead of after breakfast. Looking back I think it was a lot to worry about. And we probably should've surprised him with the doctor part. He doesn't mind going to see a doctor and doesn't really need prep for it. I thought he might even be excited. I'll blog about that another day, but it was a really great visit. The office will send us notes from the appointment in a week and I can use them to "remember" all we talked about. It was right about 90 minutes, we got home with time for a little swingset time, some lunch and the Letter Factory as a transitional, calming time before hopping on the bus.

About 12:40 we start waiting for our 12:45 pick-up time. I shoulda known better. Buses are ALWAYS late on the 1st day.

Carver stuck a screwdriver in a random piece of Styrofoam and pretended to paint the house with a terrible squeaking noise.
Then he goofed around with Grace for awhile...

Until it was now 1 pm and I called transportation to make sure we hadn't been forgotten. Nope. Just slow buses.

Grace and Carver were yelling and hitting each other so off to her nap she went. This is actually Carver running to rescue his precious bag of school supplies - Wheat Thins and Kleenex.

And it was just the two of us. And the camera.

He swept the driveway.

He inspected the sewer. He even yelled down there a bit.

Finally, FINALLY the bus came about 1:15. Whew. It was a long wait. He was hesitant, he wanted to wait til it had stopped making those sounds buses make when they brake. Then he climbed on and waved good-bye.

And then it was VERY quiet standing in my driveway. I was a tiny, tiny bit sad about that silence. But mostly happy that we'd made it. I loved the peace and quiet that afternoon - I just need to learn how to manage my days to take the most advantage of it. I should've napped! What a concept!

I worried about how afternoon preschool would be, but Carver came off the bus happy as a clam and didn't melt down until AFTER we'd picked up the girls at their bus stop (another story for another day, but it turns out the school district thinks I can be in 2 places at once) and got in the house. A little quiet time-turned naptime and we survived. I can't let him sleep too long, but he needs a break from everything by 4:30. This just might work.

Summer recap

2009-09-01T14:09:00.000-07:00

Oh, boy - what a bad blogger I've been! Our summer has gone fast and been SO much better than I feared. I really dreaded the "all day, every day" feeling of summer and was sure that Carver would regress with just me as a therapist. And that I'd lose my mind. But he's been doing great!! So did I! Here's what's new:

No more naps - except for that classic dozing in the car
He's jumping like crazy. Get that kid a trampoline! :)
I hear him playing around with sounds. Big "p" sounds in particular.
We got a swingset and it's been fabulous for him. The kids play together well, too.
Carver's on a waiting list for private OT services.
He has an appointment with a pediatric neurologist next week
Preschool will be in the afternoon this year, starting Sept. 8th
Carver starts swimming lessons in a couple weeks!
He's talking so much more, has lots to tell us about.
He wants softer karate chops and tickles (a good sign!)
the yum-yum stays in the bed

We didn't have a really regular routine since there were so many trips and adventures over the summer, but he thrived on the new things to do and see. I loved seeing him play with his sisters this summer, but I think everyone is ready for a little space. I'm excited for afternoon preschool because his little sister still naps and I am GUARANTEED peace and quiet 4 days a week. WOW! Also, we can go to library storytimes and stuff together. And preschool gets the grumpy time.... when Carver really needs stuff to do. He has a new teacher this year, she seems great, he's super excited.

The pictures are from our weekend picnic dinner up at Mt. Rainier. It is rare to have any pictures of Carver turn out well, but these were pretty good!

Endoscopy Day

2009-06-15T20:32:00.000-07:00

First the main headline: the test results were normal. If that's what you were curious about, I've saved you the trouble of reading more than you wanted. :)

Now the nitty gritty... We had a check in time of 8 am, scheduled procedure of 9:15 am. Carver could eat normally up to 7 pm the night before, which was fine. We always finish dinner by then. He had water at bedtime and then that was it until after the endoscopy. I was a little worried about him getting grouchy in the morning, but he did fine with it. He got up at 5, but Daddy got him to get back in bed and slept til we woke him up to leave just before 7. I made it downtown with almost no traffic whatsoever. We checked in at 3 desks, got bracelets for him and his dog (and I totally blanked when she asked my social security number - embarrassing!) and waited. And waited. We saw a cool octopus painted on a wall, a neat bench that looked like a Native American canoe (boat to Carver) and mostly walked around touching everything. Carver was SUPER excited to be there. He'd heard my explanation to the girls and immediately latched on to sleeping at the hospital. He was also looking forward to juice afterwards since I'm cheap and never buy it anymore.

Carver was about out of fun things to do when the nurse called us. We followed her back to an exam room. She did his blood pressure, temperature, height and weight, tried to get the oxygen reader on his finger but he wouldn't cooperate for that one. He got to change into a hospital gown on top and funny socks with "stickers" (non skid paint) on the bottom. In this room he got to watch Diego and Dora, which was nice. After another while waiting in here and being prepped on the schedule two -three different times, I signed another consent, met the anesthesiologist who took us back to the operating room.

Whoa. It was a big stark room with a lot of equipment and at least 5 adults. Carver and I were both intimidated. He just stood there and I tried not to look at stuff that might be scary. He climbed up onto the bed with some help and then refused to wear the mask. In all my briefing at the hospital and before hand, no one had bothered to tell me that his inital anesthesia would be laughing gas through a mask. I would've prepped him and it might have helped. But maybe it wouldn't have. I wish I would've had the opportunity and that was my only complaint for the day. They tried to make it fun by showing him that breathing in the mask would make a balloon inflate. Nice try!! In the end, all of us held him down and he cried into the mask. I wiped his tears, told him it was okay and watched his eyes roll back and his body relax. It only took 15 seconds or so, I'm sure. Crying probably helped. But it was sad to watch. We moved him to a good position on the bed and they ushered me out. I didn't want to be there, but it was a tender time to leave him. I probably looked worried because the nurse walking me out to the waiting room asked if I was okay. Or maybe most parents have a hard time with it. I didn't cry, but it was easy to imagine the tears coming!

I waited a few minutes, remembered that I knew things would be fine and picked up the book I brought to pass the time. I jumped at every door creak, but it was nice to think about something else while I waited. I bet it wasn't 20 minutes before the doctor came out with pictures of Carver's stomach, small intestine (right?), and esophogas. All normal. They were very pink and squishy looking. Maybe I'll scan the picture for you. Or maybe not. I'm a liberal arts major and body stuff can kinda creep me out sometimes. A few more minutes passed and the nurses came to tell me he was waking up.

He was in a new room in a small hospital bed with railings, not a crib though. He had those heart monitor stickers on, an IV on the top of his foot and was sitting up without his shirt on. He'd wanted it off in the operating room. The nurses just loved him because he woke up so suddenly. They told me he turned onto his stomach with his bum in the air and pulled his Buzz and Woody blanket over his head. He peeked out and said, "hi." What a cutie he can be! He was dizzy and still a little groggy when I came in, but he drank some apple juice and nibbled on an orange popsicle. He wasn't keen on taking out the IV, but we got it out. He really was a cutie. Several times he saw a mask hanging by the cords and whatnot and said, "all done balloon." But he didn't freak out and I promised the balloon was all done. No more mask, Carver. He wanted to keep his pjs bottoms on, but I put his t-shirt on and his crocs and he walked out with me. We sat on the boat bench and he ate his fruit snacks then I carried him to the van. And home we went!

My friend Caroline had his sisters all morning so I picked them up and made it home for some Kipper time before lunch. Not too bad! I expected him to be dizzy, but he really wasn't. He sure was when he got tubes a couple years ago! He didn't ever take a nap. I suppose even a medically induced nap counts as a nap. Darn! He's happy as a clam, good as new - well, more like every bit as grumpy as normal and getting into mischief everywhere I turn. Did I mention he likes to go outside and turn the sprinklers on right now!?

There are still biopsy results to come. Probably a week, maybe two. I expect that they'll be normal, as well. And that's fine with me! Another problem or decision sounds like a lot to deal with right now. I think they also test for allergies, which will be interesting since we have a strong family history of allergies.

Meanwhile, I have the assurance that proceeding with treatment for the rumination is all we can do. And since it seems to be a hard row to hoe, I need every bit of assurance I can get.

Gastroenterology

2009-06-10T21:21:00.000-07:00

That's a mouthful, huh? And why is it called GI for short? Where's the I?! I'm assuming it's for intestinal? Anyway...

The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.

It's not what I wanted to hear.

It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?

Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.

Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!

Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.

The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.

I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.

The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.

I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.

Lesson #4: Mother knows best

2009-06-04T20:48:00.000-07:00

Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.

It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.

I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!

Lesson #3: Love

2009-05-28T21:41:00.000-07:00

Awhile back, I was talking to another mom who confessed that she'd always been worried about having a special needs child because she was afraid she wouldn't love them the same. I really appreciated her honesty and the positive context of our conversation. It brought this lesson into focus for me.

When Carver was born.... no, before he was born... I loved him. I loved him because he was mine, because our lives are intertwined from the beginning and connected forever. When he was born, I got to meet this little guy I already loved and it just grew from there. Now, my experience with Carver isn't the same as someone who knows during pregnancy that their unborn baby has disabilities. I can't pretend to know what that's like. But I have to imagine that you still had time to love them first. That, for most of us, we wanted to be pregnant and we wanted that baby. That is where the love all starts. So no matter what happened, what disappointments were in store, we began with love.

It's a very emotional journey to diagnose disabilities like Carver's. I felt a lot of worry at first, those typical comparisons, some jealousy of other mom's little boys, fear of the future. I had to put all that on the table to get him evaluated, to be ready to face hard things. But I loved him too much NOT to. I wanted him to have help and I needed it, too.

It's a different kind of love to care for Carver than for my girls. I feel more frustrated, more impatient and more inadequate as Carver's mom - absolutely! I don't love him LESS for those feelings. I also feel more protective, more invested, and more sure that he needs me. It creates a different kind of love. A fiercer emotion, perhaps. But I know for sure that it isn't more/less than the other sorts of mother-love I feel for my girls.

I love that quote I just put on the sidebar:

“When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become."

That is just beautiful to me! And it's so true for children with disabilities. I love Carver for what he is now, for how far he's come and for all that he teaches me right now. And I certainly hope for his future and what he will become. I'm so grateful for other people that love him, too - his bus drivers, his preschool teachers, therapists, his sweet little friends and mine.

I love his smile, how he dunks his head in the pool, how excited he gets about simple things, how he's starting to fill in words to songs I've sung him again and again, how he snuggles in bed with me, the way he jumps and runs, the way he hugs me and wants to be with me. I love him fiercely, always have and always will.

And you know what? Having Carver has taught me to love on a new level. Those kids on his preschool bus have such a special place in my heart. I want to know their names and their stories and I'm just cheering for them because I know that they have challenges just like Carver. When one little boy started telling me all about the bus stop sign he could see out his window, I didn't understand a single word he said but I knew what he meant. And I loved him for telling me about it. It's easy to see the innocent in children with special needs, but I think that what really happens is that loving them purifies US.

Just for fun

2009-05-28T21:34:00.000-07:00

Doesn't Carver have the coolest bus driver? She lets him pretend to drive the bus when they have an extra minute at school. This particular morning, they were running early and let me take pictures of it. Carver LOVES vehicles and the bus was his favorite part of school for a long time. :)

I love this one. My view every morning as my little man heads to school. Awww....

Oh, dear

2009-05-26T21:38:00.000-07:00

Tonight Derek came home and as I hugged him, noticed a funny smell. "Have you been painting your nails on the way home from work?" I teased. Then it clicked - it was coming from upstairs. DANG IT!!! I ran up to the computer desk where I remembered instantly I'd left my tightly shut Nail Envy.

Serves me right for not putting back in the bathroom cupboard, but Carver opened it up and let it leak on the carpet, drip on the computer keyboard in a few places (the "zx" is what you get if you press Z and the TAB feels a little weird, too) and he must have wiped some on his hair because there is a VERY crusty streak over his ear. Someday, someday, SOMEDAY he's going to stop doing stuff like this and I'll look back and think it's funny, right?

2009-05-13T14:50:00.000-07:00

Today I overheard one mom tell another mom about the difficult girl on her daughter's softball team - a group of 3rd graders. She described the way she never paid attention to the game, how she wrote in the dirt, made mud and played in it, couldn't follow directions. She head butted other girls when they were in their batting helmets, etc... Her main complaint was that it was an annoyance to the team, she couldn't believe that this girl's mom didn't intervene. From her perspective, the mom didn't seem to notice a bit. She commented that she must be a "nightmare" in the classroom. She said, with a mixed degree of relief and smugness, that next year the team is based on skill and she's sure THAT girl won't be moving up.

I kept quiet. I didn't know what to say. But inside, I had plenty of things to say to myself.

First of all, this girl needs help. I hope that her mother really isn't as oblivious as observed. Those behaviors are obviously NOT typical of 3rd graders. Life is going to keep getting more difficult, I am a huge believer in early intervention. I hurt for her, thinking of the many who watch her on the field and don't understand. I hurt for the mother they blame.

I've considered the dilemma of group sports for these very reasons. Swimming would be incredibly therapeutic for Carver, but a group lesson situation would be... um, difficult. He'd have a hard time following directions, need more attention than other kids and their parents would be resentful. How would I feel in a similar situation? Like I'd paid a lot for a class and expected to have equal attention from a teacher. Private lessons would be ideal, but terribly expensive and out of the question for us right now. Soccer? He'd love a turn to play, but again the interactions would be stressful to him, it would be so hard. But on the other hand, when he's ready, a team experience would be wonderful for him, physical activity tremendously helpful.

I realize not everyone has first hand experience with developmental delays and disabilities. They don't understand the balance between concern for everyone else's convenience and our children's need for integration and experience. I get that. I am incredibly grateful that my girls will have understanding of disabilities and, hopefully, grow up with compassion for others around them. It's certainly difficult to have Carver as a brother and they aren't usually saintly about it. But I hope that as they mature, what'll stay with them is that they love him anyway and that they are willing to be on his team and anyone else's who needs a cheering section.

The Black Mamba

2009-05-08T15:30:00.000-07:00

Monday night our family attended "The Reptile Man" show at the elementary school. $2 a person and we saw load of creepy reptiles, not the least of which was the infamous Black Mamba snake of Africa. It's a grey, long skinny snake with a black mouth. It gets to be 15 feet long, slithers 10 mph and kills 9/10 victims. The Reptile Man said that when they feed the males (who are much more aggressive than the females), they drop a mouse in and the snakes can bite the mouse TWICE before the mouse even reaches the floor of the cage. Is that scary or what?!! All around a friendly sort of animal. I'd show you a picture, (I even found one online), but I hate snakes. It totally creeped me out. I can't see an close-up of my least favorite creature on my little boy's blog!

So Mr. Reptile teases the crowd by pretending to lose control of this vicious predator and sends two black fabric springy things FLYING into the audience. Carver was nervous about the whole of snakes to begin with, but he'd been doing okay once we got there. It was crowded and we were at the very back, holding him up to see. Thankfully, he was only startled when the pretend snakes jumped out. I was so proud of him not getting freaked out by anything that night, despite the crowds and all the big reptiles.

The truly funny part is that when the real Black Mamba came out, Carver put his hands up to his neck and goes, "awwww" - the sound he makes for holding babies and little kittens and things. We were laughing so hard. I didn't want to forget, but we probably won't. We keep quoting him and saying, "awww, the little Black Mamba." Even after his apparent affection for venemous snakes, he wasn't interested in staying to touch the big albino python with the girls. Not that I blame him a bit!

Thunder

2009-04-28T22:38:00.000-07:00

We walked to the bus stop in the thunder yesterday. Oops. I should've driven. The low rumbles were a little worrisome and then we got a couple huge cracks and he came unglued. I felt so bad, but probably being in the van would've been almost as scary. Thankfully, we don't live somewhere with many thunderstorms. Add it to the list of things that are hard for Carver. Right up there with fireworks.

Things I don't want to forget

2009-04-16T14:47:00.001-07:00

Carver gave me a dandelion yesterday on the way home from the bus stop. I can't be sure it's the first time, but I think so. Very sweet.

He played outside yesterday while I weeded and got all friendly with worms and caterpillars. He wriggled a worm back and forth between his thumb and forefinger until it became 2 worms. :) He kept saying, "friend - worm!"

On the way to the bus stop today, a wasp landed on his arm. I looked down in the stroller and he was saying, "awww" to his new friend like he does for hugging babies and stuffed animals. I flicked it off and smashed it. No more wasps for friends, please.

We had jello at lunch yesterday in little plastic cups because he watched me make it the day before and saw Lydia take one in her lunch to school. He was SO excited. Sat right up there, asked for a straw and tried to drink it! :)

I keep forgetting to blog about the lack of SPIO. After months of hoping and trying, I decided it wasn't helping and it wasn't worth the hassle of keeping it clean. I still completely support SPIO and encourage it for others. I've heard enough amazing success stories first hand to believe it works for a lot of kids. It just didn't help Carver.

He's telling me lots about school lately. "Dance. Circle Time. Freeze. Stop." Or "Brown table. Snack. Cereal." I love it. I'm hearing more and more verbs, too. "eat snack" or "play sand" or "watch Kipper." Hurray!

routines, separation anxiety

2009-04-09T21:18:00.000-07:00

Doesn't Carver look handsome in his hand-me-down sports coat? I LOVE it. He loves it, too - especially sticking his hands in those pockets.

This week is spring break and I've done really well planning activities in the morning so we don't all go crazy at home together. Carver's done really well because I've maintained our afternoon routine almost completely. Lunch, then a little quiet play and playing in beans/rice, make a nest on mom's bed for a couple books (usually Curious George Makes Pancakes then the pop-up truck book, but right now he's fixated on Winnie-the-Pooh "tight squeeze" and we're reading it twice in a row), a nap, then a movie with fruit snacks, a snack, playtime with the girls and have to kinda wing it til dinner. Every minute can't be planned, unfortunately. So we've been successful at spring break. I have a glimmer of hope for the summer. Maybe we'll go outside at the same time every day or something, take a walk or go to a park. We'll get creative, but I think we might survive 2 whole months without preschool. Sigh. That sounds hard!

Onto the mystery of the week. I had to run errands with ALL 4 of my monkeys. It was a little... hmmm... crazy? Definitely. Whiny? That, too. One stop included returning a clear sterilite tote I'd bought at Wal-mart the week before. I'd picked up 4 at once and hadn't noticed a huge hole in the corner of one. So back it had to go. Carver FREAKED out. I completely traumatized him with the transaction. There was a long line (go figure) and so we got to cry about it the whole time we waited for our turn. I'm not sure if telling him ahead of time is a good idea, but he does best with time to get used to things - especially where we're going and what we're doing. Why didn't he understand that it was broken and we didn't want it? He understands the concept of broken. Why was this so heart-breaking?

Then today I returned sandals and a shirt I picked out for Derek at Costco. He didn't like them, so back they went. Carver was super worried about that at home, but cried only off and on. And we walked right up to the counter and he wanted to hand them to the cashier, which he did. (And incidentally, he was telling him "sandals, sandals" and the guy was so not kid-friendly. He ignored him and obviously figured something was "wrong" with Carver. He didn't win many points with me.) Then the freak out began. In fact, I talked to Carver the whole transaction about it and everyone is staring at a preschooler crying inconsolably about returning adult sandals. Is there something I'm missing? This is the sort of experience that makes me wonder again about cognitive delays. It's like something hasn't clicked in his brain, that there is a switch that needs to be flipped so he understands about separation and that we don't form attachment to plastic totes and sandals.

Along the same lines, Carver's finally gotten better about not wailing and crying everytime someone goes to the bathroom. Seriously, he used to fully lose it every single time someone shut the door at our house or at someone else's. Kids, grown-ups, people he loves, people he hardly knows. Now he only does that sometimes. Okay, maybe half the time. But still, that's better. And he doesn't cry and cry when Derek leaves for work. He totally gets that routine now. It's always right after breakfast, it's a very structured part of our day. But I guess you just never know when someone is going to need to use the restroom, not much I can do about that!!

Parent Teacher Conference

2009-03-24T21:03:00.000-07:00

Last week Derek and I went to Carver's parent teacher conference. If you've only ever been to a typical PT conference you are WAY missing out! These preschool conferences are amazing. We spent nearly a full hour talking to Carver's teacher, as well as one of his occupational therapists. It's such a different experience than talking for 10 minutes with his sisters' teachers! I love it.

First of all... Carver is extremely well behaved at school - no tantrums, no hitting at all. They were really surprised that we even asked. We were surprised that THEY were surprised! For awhile there Carver was saying about school, "hit... sad... cry." And we'd wonder what that was all about! He hits plenty at home and tantrums are just a part of communication between us. It's relieving and disappointing at the same time to know that he's so much better those 3 hours a day he's away from us! (makes me wonder what we are doing wrong...) But mostly I'm grateful that he's good and that because of that, he's able to get the most out of the program.

He's their "color boy" and knows at least 8 colors. I see him doing shapes at home, as well - stars, triangles, squares, circles. He still knows a few letters, but hasn't been as interested in that lately. They said that he answers questions right, that he sits criss-cross applesauce on the floor (they found that the cool cushion his old teacher liked was making him wiggle more), participates in singing time and knows the routine. He helps other students with their coats and backpacks and LOVES to help bring out the heavy car road map every day. He showed us and and just beamed. Too cute.

Oh - I loved that they said he was VERY good at quiet hands, that he does it instantly! It's your basic folded arms and we told them that he does it for prayers at home, too. Pretty cool to see the overlap and the success in both areas because he's very good at folding arms for prayers at home. Keeping them folded and not eating his food is another story.

He's meeting milestones and goals from the beginning of the year, some of which might have been too low. But cognitively, it was hard to guess what he knew back then. Now we're seeing an explosion of language and participation, even at home at his grumpiest. Interestingly enough, they said that since the class split into 2 smaller groups, lots of kids have been talking more and making better progress. I'm so grateful that the district hired another teacher! These kids definitely needed the space. His teacher seemed great. We're very happy with everyone there.

In his gross motor occupational therapy, Carver's working on catching balls, throwing balls, bouncing balls, swinging on platform swings, scooting on a "bike" with his feet, riding a scooter down a ramp, and lots of jumping. Jumping off steps and jumping around like a frog. It was great to get tips of things we can try at home. That was the OT we met with so I have more details from her.

As far as speech goes, he's labeling really well with one word. They are working towards categorizing items - name a food or a vehicle, etc... I thought that was interesting. I love seeing how the learning process is broken down to individual steps. Also, they are working on using more verbs in his speech. I've been thinking about that, too. simple sentences like "I like milk" and "want" have been goals I've had for us. He says "hold it" (when he wants to touch something) and other verbs that are slipping my mind at the moment, it's definitely an emerging skill that we'll be working on.

It was super cool to take him with us because he knew right where to go, led us up to his classroom and knew which door to go to and everything. It was so fun to see his place! I can't say enough how GRATEFUL I am for preschool - the very best thing to happen to Carver!

Potty success

2009-03-16T16:44:00.000-07:00

Shame on me for not posting this picture in January - Carver had his FIRST success in the potty back then. He was delighted, he knew what happened and that he got to wear a Lightening McQueen pull-up as a reward. Wa-hoo! I've tried to put him on the toilet first thing in the morning, hoping it would be the best time. That particular day, his diaper was already wet and I can NOT believe he went again. And then 10 minutes later in the pull-up, too. Does he have amazing control? Or is something wrong? Who knows. I need to ask the dr. I was regular at this for a week or so and then I got lazy, then I forgot. But I remembered again today and he POOPED in the potty. He'd been sitting there less than a minute, recognized what was coming and sure enough - he did it! HURRAY!!! By no means do I think that we're "potty training." This is still very much PRE-potty training. I'm sure proud of Carver, all the same. :)

Lesson #2: Don't judge other parents

2009-03-11T13:21:00.001-07:00

Carver is NOT napping at the moment and I'm here supervising that little bit of rebellious behavior. I might as well be productive about it, right? Lesson #2 comes next because it's the next one on my mind. No order to this whatsoever. Check out Carver and I in this group shot from last summer's trip to Disneyland. It's a great one for this topic.... :)

And I'm going to be honest here. Don't we all see kids behaving badly at the park, in the store, where ever and wonder what their parents are thinking? It's only natural to assume that the 5 year old making a scene in church has never been taught reverence, right? And that 4 year old with a pacifier is over-indulged and babied by parents who won't help him grow up? Wrong.

Carver's disabilities don't show. He doesn't look different from other kids, most of the time. He wore his SPIO suit for awhile and sometimes he has drool or yogurt on his shirt that most 3 year olds don't have. But otherwise, his disabilities qualify as "invisible." So when we are at the park, in the store, at the doctor's office - other people see his constant physical motion, inability to follow directions and tantrums as signs of bad parenting, right? Probably. Sometimes his behaviors give clues to other parents that there is something wrong and they might ask, they might not. But plenty of other times they wonder why we can't control this kid who looks like he must be 4. But his disabilities are REAL and so we look and sound different from other families sometimes. I'm sure lots of people have come to inaccurate conclusions about us because they only know part of the story.

So if Carver's difficulties are invisible, what else might be? How about sick children? Maybe they missed their naps, maybe they are going through a difficult phase, maybe whatever activity we see them in happens to be the hardest part of their day. We might be seeing someone at their very worst. Or maybe it's just a huge success that they made it out of the house that day, for whatever reason. There are so many invisible challenges, so much more to everyone's story than what we see in a brief conversation or even in an afternoon at the park. I'm trying hard to remember that and I'll tell you what - my perspective has really changed as I look around and give parents the benefit of the doubt. I'm pretty sure we're all just doing the best we can. Until you know the WHOLE story, it's just not time to judge.

Shnuggles

2009-02-28T13:40:00.001-08:00

Ah, the sweetness of sleeping kiddos. Carver and I have a tradition of "Shnuggles" in the morning. He wakes up around 6:30, which is too early for the little sister he share a room with. So we're thankful he almost always comes to find me instead of flipping on the light in there. I should get up at 6 or 6:30 on my own, but I'm not a morning person and we don't get to bed before 11 so I'm desperately tired when he comes in. I hear his little footsteps across the floor, climbing onto the cedar chest at the foot of my bed and then I feel him climb up beside me. Othertimes I see his face peeking at me from the side of the bed.

He climbs in beside me and wiggles a lot, trying to comfort himself by playing with my hair or stroking my arm. He kicks a little, too, or pushes off my legs - probably seeking propioceptive input. I try to tickle his back, rub his arms or give him tight squeezes and hold his hands. But honestly, I'm mostly wishing like crazy I was still asleep. Some days are more like 5:40 and then I try not to feel just down-right frustrated. He'll stay in bed with me for up to an hour on those days, not as long when it's later.

When he's done, he sits up and tells me "wake-up" or pulls the blanket off me. Lately he likes to tickle my feet. Usually I think this whole routine is a bit frustrating, but I realized yesterday how LUCKY I am that he gives me that time I need to wake up slowly. I love talking about breakfast with him, too. He'll start with "scones? chocolate chip scones?" Nope, Carver. It's not Friday yet. "pancakes?" "mini-wheats?" It's so fun to hear him wonder what we're having that day.

I love that I get to shnuggle with my little man, even for all the kicks and hair twirling in the early morning hours. Because I know that someday (probably soon) he'll outgrow it.

Lesson #1: Letting go of the guilt

2009-02-21T13:06:00.000-08:00

This is the start of a series that'll probably last my whole lifetime. I want to record lessons I'm learning from being Carver's mom. One of the first things I learned was about guilt. When Carver was just months old, I worried about how he wasn't smiling at me. He didn't do that normal infant behavior of watching your face, opening his mouth and cooing along with you. I kept waiting and waiting and FINALLY he did it once right around Christmas. He was 2 months old. He didn't engage with me often, even after that point. This was the first time GUILT started to sneak in.

I worried that because he was number 3, I hadn't spent as much time talking to him as I had with the girls. He spent more time in his bouncy seat, less time just being looked at - all that firstborn stuff. I swear I just sat around and watched Lydia grow! :) As Carver continued to miss milestones, there was lingering guilt and worry mixed together. That somehow I'd not been nurturing his development enough, that if I'd done something differently he'd be on track.

Even though I worried, there came to be a stronger sense of peace that Carver was just Carver, that I didn't cause it. I'd been careful during pregnancy, his birth was fairly uneventful. He'd been posterior, I hadn't had an epidural - but otherwise, no warning signs. I really believe that the Lord was helping me feel that it wasn't my fault.

A scripture that has become really meaningful to me is John 9: 1-3.

1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

What a beautiful reminder that disabilities aren't punishment! And that our lives are in the hands of God, that He has a plan for us. When I reflect on all I've learned and all the ways I've been stretched (both as a mom and as a person), I see that the works of God have been made manifest in my life, in Carver's life, and in the lives of so many more. And I know that everything is going to be okay.

So the lesson I learned early on about letting go of the guilt has continued to be important. You have to let go of the worry that you've CAUSED the problem, but I also have to continue to remind myself that I'm doing the best I can. I'm not a perfect mother to my typically developing children, I'm not ever going to be a perfect mother to Carver. And my faith in God comes into play here, as well. I know that Carver wasn't accidentally sent to our family, that the Lord knows that I can do this. I can be his mom, I can be good enough. That gives me courage to let go of the guilt and keep trying to be better.

heroes on the basketball court

2009-02-12T13:00:00.000-08:00

This video isn't very long, but shows what a difference one outstanding coach and supportive friends can do. I cried and cried, especially at the end when the reporter talked about how he'd always felt different, but never THIS kind of different. I've learned that kids with special needs require a team to teach, educate and love them. I can't keep Carver in my house all the time, I have to trust him to teachers, bus drivers and other kids - to help him and to be kind. And with people like this out there, I have no need to worry. We are blessed with good friends now and I know that Carver will always have a cheering section, no matter what.

the smell of drool and other mountains to climb

2009-02-09T14:33:00.000-08:00

I realized the other day that I'd been rather subconsciously waiting for SOMETHING to blog about here. And then I remembered that the main point of this blog was to record thoughts and feelings and ideas relating to Carver - everything I don't want to forget. I'm committing to be better at that!

Right now what's on my mind is social interaction. Carver started primary at our church and attends a class for 3 year olds, "sunbeams." The first hour they sit on chairs with lots of other kids, sing songs, listen to a lesson. The next hour is in a little classroom with only his class. This is a HUGE change from the "nursery" he attended before, a 2 hour block with toys and books and snacks. The transition hasn't been easy for us. He wasn't excited to leave nursery, but he likes being with his big sister for the first part, sharing time. And he has lots of friends in his class. His dad sits with him during sharing time and helps him stay on his chair, not run around the classroom, etc... I think the first or second week, he zipped right up the aisle to try and touch the pretend birthday cake on the table in the front of the room. :) Week by week, he's more excited about sunbeams and he likes that Daddy comes with him. He's adjusting.

It's actually much harder for me because I feel like he's outgrowing life as a toddler. He's expected to do more preschooler type activities and his peers are noticing his differences more and more. I've had kids say that he smells bad - either his breath or they say he needs his diaper changed. Now, I'm not losing sleep over what other 3 year olds think - BUT it clues me into what's coming ahead. And honestly, drool smells bad. His shirts sometimes do smell like that. I try and try to get them clean, but we just can't help it. And his peers are all into who's potty-trained and who's not. That's a very normal issue and Carver could care less what the other kids are doing. But someday, some of that is going to sink in.

Last week we went to the park after the bus stop and there were lots of kids from the neighborhood there. Not any truly big kids, everyone was under 10 or so. Carver had the HARDEST time. He couldn't run around and have his space to play on his own, kids kept banging on the metal slide and scaring him (not on purpose) and it was just too much for him. He cried and cried. Sometimes he stopped dead in his tracks and cried. At one point, he came sobbing to me and put his face hard on my shoulder, while I held him and hurt for how frustrated he must be. One of the neighborhood moms asked how old he was. I knew what the underlying question was and told her he was 3, but he has some speech and sensory integration issues. I got an "oh" and then she didn't know what to say, although I could tell it confirmed her suspicions. I don't blame her at all - it's the right kind of question if you want to know what's up with a kid that's not acting his age. But the whole experience left me feeling exhausted and discouraged.

Looking through a different angle, I've seen Carver grow more and more capable of helping around the house. He cleans up his toys better - he especially loves to help rescue all his bath toys as the water goes down the drain. He washes the dishes a little when he plays in the bubbles. The other day he came off the bus holding his little baggie of gum and a chewy tube that he takes to school. He told me, "homework!" He wants to be just like his sisters. That same day when THEY came home, he went running for his backpack to find homework to do with them. I picked up a new alphabet coloring book for him at the store so he has his own homework book. The funny part is that he has very little patience for coloring and table work like that. But the desire to be included is real.

Carver is learning letters - M, O, S, are his best ones. He knows some of the sounds to those and K and T and P. Thanks to the "Letter Factory" for hours and hours of repetition. :) I've been working on counting and wondered if we'd EVER get past 2. Really, he still uses 2 words together MOST often so that makes sense. We've occasionally heard him say "3" and the other day at the park, a QUIET day before the kids came home from school, I was pushing him on the swing and counting each push. He not only said the numbers with me but anticipated a couple of them! WOW! I figured that the movement of the swing was regulating to him, enough to help him get those words out in the right order. It was very cool.

Carver's preschool class has grown and split! He is in with a new teacher, who I've met and really liked. He doesn't mind at all. He's with a friend, Jordan, a little girl that his old teacher told me about. She said that they run around together and are such cute little buddies - pulling on each other's arms to go play. When she first emailed me, she said to ask him about her. I did and his face really did light right up! He said, "snap, snap" like an alligator and I think he was trying to tell me what they played together. I'm so grateful for preschool!

AND Carver has been really growing in his friendship with his little sister, Grace. They play in the bathtub together and get into mischief, too, these days. A couple nights ago after the school science fair, we came in and Grace was super tired and cranky. She sat and cried by the door while I looked for a pacifier. Carver took the one out of his mouth and popped it in hers to calm her down. I LOVE that. He is such a sweet boy!

a SENTENCE!!

2008-12-29T13:29:00.000-08:00

The other night Carver and I were cleaning up his big beads and strings that G&G made him. He reached and stretched to get one under his bed, came up and declared: "I did it!" His first sentence and it couldn't have been more appropriate.

A few days later, I was telling him he couldn't have more water (the kid had probably 12 ounces at dinnertime) because he'd wet the bed. (We've had that problem recently and he's still in diapers!) He copied right back, "wet the bed" clear as day. 3 whole words together! YIPPEE!

I have wondered lately how often he cognitively speaks in sentences that we just don't understand. Often there are strings of sounds that might be words, but we would never know it. Speech delays are interesting in that way because it's SO difficult to interpret what represents a lack of communication and what is a cognitive delay, as well. I guess we'll never really have answers for that one, but I'm sure excited to see this progress.

snow days for Carver

2008-12-17T13:26:00.000-08:00

This week we've been snowed in and missed 3 days of preschool in a row. I can't tell you how much it's made me appreciate preschool even more, just when I didn't think that was possible! :)

Yesterday in one phone call of reasonable length, he grabbed the butter out of the fridge to go squirt/shoot his sisters. One stick in each hand. As I put it back, I noticed the mustard on the kitchen floor, thankfully unopened. MINUTES later, he was carrying around the chunk of cheese from the fridge. Then it was the toilet paper, pulling it off with the intention of blowing his nose in it, but he doesn't have the skills to know how much is enough or how to stop - it's addicting, that TP. Then it was pushing the stool up to the sink to try and get water in a little cup he'd been playing with. Then to the pantry to try and help himself to fruit snacks, which brought the whole tub of snacky food down to the ground, spilling only slightly this time. I'm not exaggerating when I say that nearly every time I turn around, he's into something else inappropriate. He might just be running through the girls' play, taking toys from Grace, opening the front door because he can and because I'll ALWAYS come running to keep the snowy day outside. Maybe he's asking for play-doh, emptying something in the floor of the closet - something loud and with many pieces, a puzzle or the box of dominoes. Later, it was the pipe cleaners from our morning project with the girls spread all over the kitchen floor again.

I can see that he's searching for something, that he NEEDS something. But what? Why doesn't play-doh fix it? He's not hungry for food, he's hungry for sensory input. This is my sensory seeking boy - always seeking, trying to find it. I try to give him big squeezes, tight hugs, throws onto the couch, play-doh time, coloring, sticking connect-four style circles into a Fisher Price Noah's ark game. He loves the time with me, but I still never feel like he's satiated. Just writing this helps me organize my thoughts and try to see patterns. Because just like Carver, I'm always seeking answers and help.

Snow days are also hard because his big sisters are both home all day. Not only do they need something to do (even the best 5 year old and 7 year old can't entertain and feed themselves ALL day!), but they boss and nag and yell, "Car-VER!" in that way they've certainly heard their mother address her sweet boy. It's exhausting. I'm impatient with their impatience and that's no solution, for any of us.

We have one more chance for preschool tomorrow and then it's winter break anyway. It's going to be a LONG time til Jan 6. I've found myself slacking in our sweet preschool routine. It doesn't require as much of me and he's so fulfilled. Now it's back to the pre-preschool days (can you say that?) and I'm back to searching for more than a basic understanding of SPD. I need to know how to satiate this boy, which activities are going to fill his need. Am I supposed to be trying to calm him? Or get him going? I'm never sure.

Recent Successes

2008-12-14T20:59:00.000-08:00

Here's a few things I don't want to forget:

Carver learned to JUMP a couple weeks ago! HURRAY for him! It's so cute, a full-body wind-up for a very little bit of air cleared by those little boy toes. We cheered and cheered!

Carver ate his yogurt without a drip TWO days in a row after preschool last week. He used his spoon to wipe his chin, too. I really believe it comes from a fabulous sensory diet at preschool. He comes home on top of his game. It's amazing to see.

Our dear friend, Sue, dropped by with a surprise for Carver. A brand new Sonicare toothbrush! She happened to have a stash at her house and wanted to share with us after reading his blog. Not just Carver, though - even mom and dad got one! I was so touched by her thoughtfulness and the generosity of her gift. WOW! Although it's going to take me some practice to get used to that kind of vibration in my mouth. I can't believe Carver loves it so much! It's pretty intense for typical mouths like mine. :) He LOVES it, though. In his mouth, on his cheeks, lips, neck, even his armpit once. (Yum!) Thank you, thank you, Sue!!

Carver's instrument of choice

2008-11-26T14:36:00.000-08:00

Carver LOVES to play our harmonica. Well, it's actually Daddy's "Official Boy Scout Harmonica" and now a bit dented and covered in Carver spit. But it's a great alternative to the yum-yum and I don't even get tired of the noise!

Parent Teacher Conference

2008-11-24T20:43:00.000-08:00

I met with Carver's teachers on Friday and loved it. We didn't address goals/skills, just chatted about how he's doing, what works and what challenges there are.

She said that he began the year very bus-oriented. He'd listen for cars and trucks and start shouting "bus" if he heard something rumble by. But she's noticed him become more school-oriented, which is good! He comes in super excited and likes to help everyone with their coats and backpacks, which all get hung up. Sometimes that involves yelling, "bus, bus!" and causing a little trouble with those who don't like loud noises. He's also a bit of the town crier at snack time, when he likes to announce, "clean up!" when it's time to clear dishes and wash hands. That brought a smile to my face. He loves that role at home now, too. It's pretty cute.... and loud.

They have circle time after everyone is in and settled and this part is tricky for him because it's hard to sit flat on the ground. He has been doing well with a rubber cushion:

with a wedge shaped foam on top:

His teacher thinks it's hard for him because it stretches his hamstrings and he's a little stiff. I believe it! She feels like he's making progress and now only uses the rubber cushion. I'd like to get one for home use, too, but we'll see how that fits into the budget right now. (I found www.therapyshoppe.com in my searching and it's an AWESOME website. I'm really excited about it!)

We talked awhile about Carver's desire for any attention, negative in particular. He has been known to sweep things off the table at school (just like at home!) and his teacher had a stroke of brilliance one day completely ignoring him. She pointed to the mess and didn't look at him. It took him a minute of waiting for something to happen, but then he hopped down to get the toys. If only I could always be so patient! It's good motivation for me, that's for sure! And it also impresses me to hear how they handle his antics. That same day he struggled to finish his "job" of beading (something he excelled at just two days before), he took 20 minutes to finish it before joining the rest of the class. He heard them moving on and doing fun things and finally finished. He was putting together an "if... then" behavior pattern, which we are working on at home, as well. Hurray!

He loves adult praise and attention so he LOVES his time with the specialists, his speech therapist and physical therapists. That time has been really productive, which is great to hear. He definitely likes one-on-one time with grown-ups. He invites me for that kind of play ALL day! :) I'm glad that it's working to his advantage in therapy.

The class is growing to 14 students in January and his teacher is pushing the district to open another class. It's really too many special need 3 year olds, even for 3 teachers! They don't even have peer models in their class. I'm keeping my fingers crossed, for everyone's sakes. I'm sure it's not easy for the district to balance all the needs in the schools, but this seems like a pretty important one to me.

We talked and laughed together about how Carver's diapers are a little snug and wondered about pull-ups. They had a good point about the stretchy sides being more comfortable. I think I'm still too cheap. And they aren't easier to get on. Besides, they aren't as absorbent since they really aren't intended as diapers. Maybe I'll try another brand. And hopefully Carver potty-trains before his diapers don't reach around him anymore! :)

Overall, I'm impressed and pleased with what I've seen at school. The projects he brings home are well-thought out and represent hours of classroom work, literally. These kids get very specific directions on the smallest details. What patient teachers! They are making all the difference for our little guy!

some extra support for ME!

2008-11-17T12:49:00.000-08:00

Our fabulous former speech therapist organized a support group for moms with kids like Carver. We met the first time on Saturday morning at a local coffee shop and it was wonderful. I was a little hesitant to commit to one more thing right now, but this is definitely going to be worth my time! It was neat to hear other moms have so many similar feelings and experiences, but at the same time have enough differences that we can help each other. One mom just swears by those SPIO suits for her two boys and hearing her testimonial motivated me to give it another strong push. After a month of consistently wearing his SPIO, her son stopped drooling. I think, for that kind of success, it's worth another try! So I'm going to give it a really dedicated effort through Christmas and see if we can see some progress.

I also realized that I've been SO very blessed to have incredible support of friends and family. I am really grateful for how understanding everyone has been. I'm looking forward to learning from these moms of SPD kids and broadening my support group even more.

birthday, well-check, the yum-yum and preschool updates

2008-11-05T20:33:00.001-08:00

Updates, updates. Here we go:

His birthday was so much fun. We had a big cookie and ice cream, but best of all Grandma and Grandpa were in town. Carver LOVES his Grandpa E. It was such a great treat! We had a fun day together.

Here he is, trying to open a present with his beloved Buzz lightyear gun.

Well-check. Of course I forgot to post back then, but better late than never. So I also forgot to ask the doctor if she'd recommend a genetic screening of sorts to rule out any medical condition. I wasn't excited about that, but honestly I just forgot. Pretty lame mom moment, but it's the truth. I love the stats, so here they are:

Height: 38 3/4 inches (90-95th percentile)
Weight: 42.8 pounds (above the 97th percentile)
Body Mass Index: 20.1 (above the 97th percentile)

There is some concern there. Obviously, he's a big kid and he's both thick AND tall. But the BMI worries the doctor a bit - thankfully, she's a wise woman who said we have enough to think about right now. Portion size is the greatest way to help him out, but it's terribly hard to say "no" to a grumpy SPD kid who won't leave the kitchen. I'm not too concerned right now, but I also see that his size doesn't help his coordination and motor skills any. I'm not WORRIED, but it's on my mind.

The most interesting part of the well-check was how different it is now to me. It was very bland after evaluations/therapy. I felt like it was important and I wouldn't skip a well-check, but my concerns with Carver are mostly non-medical. I told her about speech therapy, preschool, etc... I think I did most of the talking! And even his eczema/molloscum contagiosum spots are something that I've already dealt with enough to know there's nothing more anyone can do. I have been used to seeking counsel at these appointments, getting answers, but this time I caught HER up on what we've been doing. I hadn't seen this doctor before, but trust the clinic and was really impressed by her. We'll go back again.

So PRESCHOOL is great. I can't even express how wonderful it has been for all of us. Cute Ellie is counting every day we have together in the morning. Today was our "8th mommy daughter date." Do you think preschool is blessing more than just Carver? Absolutely. The time just FLIES by. :) He loves to go and comes home so happy, very fulfilled and then he crashes. I'm getting good naps from him every day! But part of that is probably his lingering cold, as well. Either way, it's been great.

What is weird is not knowing what's happening there. I've emailed the teacher a couple times to check in and I'm trying hard not to bug her often. I was really excited to see PT (physical therapy) homework come home today. We need to work with ball skills: bouncing off the wall and catching it, bouncing into a bucket, catching, throwing, the basics really. Too bad the weather is turning nasty. What wall should I find to bounce balls off? Maybe his room. It's not decorated/painted yet. :)

I'd gotten used to the style of speech therapy where all 3 of us (sometimes plus Grace and/or Ellie!) would play and interact together. I knew what to work on, asked my questions, got tips. This is a whole new scenario. But not a bad one, just different. I LOVE, LOVE, LOVE the stuff that comes home with him. A cute spider craft and a mini pumpkin he used a sharpie to color a face on. Or the glove filled with popcorn and candy corn. It's so much fun. Today he got off the bus, absolutely thrilled with a book in his backpack. "cows!!" he kept saying. Sure enough, it was a book about a boy who swallowed a fly (and everything else) and there were cows on several pages. Yesterday he brought home a flyer about a play put on at the junior high, that classic school "junk mail" and I so I recycled it. He was worried about that. So worried that today when he got out his backpack for school, he ran to the recycling bin in the pantry and I knew he was looking for it. I fished it out and he was happy as a clam. Even without many words, I know how much all these details mean to him. He's just like his big sisters! He feels so grown up. And I'm SO grateful for the attention he's getting at school.

And we're back to the yum-yum (pacifier). After a couple of weeks without, I saw him sucking his thumb more and more often til he wouldn't go to sleep without it. I just couldn't let that happen. It wasn't easy to go back, but I'm glad that we did. What it comes down to is Carver's individual needs mattering more than what people think seeing a big 3 year old with a binky. I'm still trying to use other things throughout the day and he definitely does NOT take it to school, so he gets it for his nap at home and usually during his movie time, then bedtime. And really grumpy moments, too.... :) Okay, he has it a lot. But we're working on it.

FAVORITE Carver tricks right now:

he gets up way too early and climbs into bed with me. Rarely he falls asleep, but usually it lets me wake up slowly (which I need) and he doesn't kick much anymore. It's gotten to be something I actually look forward to.

he loves to talk about "empty" - a new concept for him. Great word. His pretend play has exploded. It's very exciting, as well. He mops with his stick horse, eats birthday cake with his stacking cups. I love it!

he calls the girls for dinner or today when they got off the bus, he cupped his hands around his mouth and started calling out "spiders!" because we'd seen one on the way to the bus stop and he wanted to show them.

HARD things right now:

he's figured out doors. He can open ALL of them and it's really a pain. closets have to be Carver-proof now and it's only a matter of time (days?) before he learns to unlock the front door, which is the only way he's staying inside. The garage is bad enough. And the kid is NOT afraid of the dark. He just flips on the light and heads for the van.

hitting and pushing again. sometimes this is for attention, either theirs or mine. Almost always because he's frustrated and not getting what he wants. The time in the corner was working well, but not anymore. I might have to do straight up to his room for a minute. But that's hard to do when Grace is grumpy and I'm making dinner. I just usually scold him and give him that negative attention. Sigh. Parenting is a MILLION times harder to actually do than talk about.

PRESCHOOL!!!

2008-10-23T11:47:00.001-07:00

The big day!! He started preschool yesterday and it went great! He was super excited about the bus ride and wearing his backpack. He saw the bus approach, though, and stuck his thumb right in his mouth (we're really hoping that's not a new trend for him) so he must have been a tiny bit nervous. He climbed on the bus no problem and got all buckled in. Here he's blowing kisses at us:

It's pretty neat, actually. There is a bus driver, obviously, and she had an assistant to help out. There are built in booster seats that fold out of the regular ones so he was buckled in a 5 point harness. He came home happy as a clam, talking about the bus like crazy. He didn't seem worn out or anything, but as the afternoon went on I could tell he was tired. HURRAY!

His preschool teacher called in the afternoon and reported that he'd done great, followed along with the group well and was speaking more than they expected. Good news! His teacher's name is Ms. Maki and she said that he must know her name because when he wanted her, he'd call out "Ma! Ma!" I can totally hear that sound in my head and cringed just a little because it'll get old fast! Maki said that he played kitchen with a couple girls and they were setting the table together. Cute boy! I guess he sucked his thumb a couple times at school, but she said that he was too busy to have it be a problem. That's good news. By the end of the day, however, she could tell he was ready to go home. He was obviously listening for the buses and saying, "home."

Today he woke up REALLY early (6 am I heard dinosaur stomping sounds coming from his room and the light ON!!) and was definitely grumpier. I'm helping in Ellie's class or I'd give him a nap for sure. Too bad.

The bus stop thing is working out great. His bus comes just before it's time to take Lydia to hers. Today was a little tight and I had to send her ahead of us, but made it there in time to kiss her and wave good-bye to her through the window. His returning bus comes at 12ish and we have time to eat lunch quick before taking Ellie to HER bus stop. What could be REALLY crazy is working out great. But 5 bus stops to remember a day?! That's insane. At least Carver's is at our house!

So that's preschool! More on his birthday to come.

LAST speech therapy

2008-10-08T11:54:00.001-07:00

I'm full of emotions these days because I had to have a good cry after our WONDERFUL speech therapist left for the last time today. Carver's graduated from the SKIP program (birth-3 yrs) and is now ready for our school district's program, a developmental preschool in our case. I've loved doctors in the past and teachers the girls have had, but there is something really profound about someone who loves and helps your child with special needs. It just tugs at my heart strings like nothing else. So here's a big THANK YOU to one really special speech therapist.

She had great tips for our preschool IEP in a week, getting into writing his oral needs and making a plan for sending the chewy tube and probably gum in his backpack. Also she noted an improvement in his drooling and suggested wrist bands for wiping his face himself. I think it's REALLY time I put that on my list for Target. :)

We talked about goals we made back in May at the beginning and it was exciting to reflect on Carver's progress. He's come so far in just 6 months. Those first appointments he spent throwing fits, begging and crying for milk or food all the time, with absolutely no attention span for play. Now he not only associates his ST with play-doh, but sits for a good 20 minutes or so playing with us. AMAZING. And he uses words for what he wants, he waits for the next activity so much better than he used to, understanding that we're doing something now and he waits for something to come later. We still have a lot of work to do (dressing, undressing, potty training, to name a few...) but we've come so far!

The transportation dept at the school district called today and scheduled bus stop times for Carver and it works out perfectly to have him picked up here. I can't believe it fit into my already bus-stop filled day. Hurray for that! We're going to go take a little mini tour of the bus the Monday before he starts to see what it's like. I hope it helps. What an exciting time. Change always makes me emotional, moving, graduating, maybe it's the change of seasons, too. Sometimes I'm amazed I don't cry when I take out or put away the winter clothes! What an exciting, stretching time for Carver and for me, too.

the latest

2008-10-06T13:09:00.000-07:00

I'm getting behind! Therapy was last week, she brought "thera-putty" which is basically silly putty in various degrees of softness. It's pretty cool, but Carver's afraid of it because I popped a couple air bubbles in it at first, thinking he'd like it. Guess not! Grace loves it, so does everyone else. I like how it sinks back down smooth when you're done but feels so firm when you play with it.

We worked on a puzzle with him (an animal sound kind from Melissa and Doug) and he wasn't very interested in finishing it. We also built towers with wooden blocks and said, "up, up" with each block added. He wasn't interested in the tower until we made a garage for his car and then he was all about helping add blocks to the top! I guess it's always about finding the angle. :)

And now... drum roll, please..... we took away the pacifier! Saturday morning was the last time. I'd been prepping it on Friday by saying things like "where did your pacifier go? Is it on a boat? Did it go on a train? Is it at it's grandma's house?" silly things like that. I believe that helped get the idea of the pacifier being far away, not just in my pocket or in the kitchen drawer. I really think it's helped. So we didn't do a "fairy" or a trade or a big garbage throwing away moment and, while I'm using only good old fashioned lying as my technique, I think it's saving us trauma. Ellie talked about her "happer" in the garbage truck for MONTHS and never liked the stuffed cat we offered as a trade. what's the point? I've just told him it's gone, we don't have it anymore. That's true. Then we hypothesize about where it could have gone and that's that. Bedtime is tricky. He's requiring a lot of singing and arm rubbing, but that's how it started out when we moved him from his crib. It might take a couple weeks, but he'll adjust. As I type, he's fallen asleep on our bed without the "yum-yum." there is definitely hope! :)

It all started because the preschool teacher called and I asked which she'd rather we work on, the pacifier or the potty training. She said pacifier and I figured now was as good a time as any! We're working on getting the bus stops set up, as well. We meet on the 17th to make an IEP (Individual Education Plan or something along those lines) and his first day is his birthday, Oct. 22nd! Wednesday. Wow. So exciting.

He's a super Mommy's boy right now - pretty tiresome, but sweet at the same time. I love being needed and there are few things cuter than being taken by the hand by Carver to go play, unless of course he's whining and crying and pulling hard. I think that happens most often!

I'm sure proud of him for going cold turkey on the yum-yum. I hope this week is okay for all of us!

Back in the swing of things

2008-09-26T14:35:00.000-07:00

I'm feeling all better, I had my hard day and now I'm back into regular mode. I'm excited and grateful for all that we've seen in terms of progress and we have much to look forward to!

We didn't have speech until this week. Wednesday to be exact. She answered a lot of my questions, thoughts about preschool. I should be able to take Carver to observe the preschool, maybe ride the bus with him or follow it the first couple days. They teach standard preschool curriculum - shapes, colors, etc... potty training is a high priority, as well. I've been dreading that for years, seriously. But if they want to try it, we'll do our part. I guess it's got to get worse before it can get better. Pull-ups are so stinkin' expensive, though! She thinks morning would be better for Carver, as do I. I need to call today since I still haven't heard from a preschool teacher.

Our ST said that the term for Carver's speech difficulty is "apraxia" which is basically poor motor planning in your mouth. There are 3 types/degrees. The first is just verbal - difficult with speech. The second is oral and relates to swallowing and eating, drool, etc... The third is general apraxia and affects the entire body. Despite Carver's lack of coordination in his motor skills, his apraxia is somewhere between verbal and oral. Swallowing and eating hasn't been a problem, but he obviously has a hard time containing his saliva and feeling drips, etc... This is not disheartening to me. It is just a name for what we've already known. Having a name gives me more books to read, websites to browse. Check out apraxia-kids.org for more on this.

Latest successes:

Lots more words strung together. Mostly 2 words, sometimes 3 if you disregard pauses between them. Even "green lawn mower."

I feel like colors are getting better for him, he's right more often than he used to be. :)

He's counting. I swear I hear him get these right half the time, even up to 10. It's hard to decipher his language, though, even knowing what he's trying to say. Bless his heart for trying!!

He's been doing much more imaginative play - crawling around and making animal sounds. A snake on the kitchen table for example or a lion crawling around my room. I might limit animals to the floor, but it's so cute.

He also assigns familial roles to his toys now - moms and dads mostly. I love seeing that. and usually the dad is the big one, so he's thinking about it.

He sits through books better than he used to, listens and wants to talk about the pictures and the action. He loves Green Eggs and Ham right now. And truck books. Are you My Mother, too? He likes to answer "no" whenever I read, "is the cow his mother? is the dog his mother?" It's great!

Carver has been learning to be more gentle with Grace, even trying to play with her a little. The other day she was trying to tickle him and he looked totally surprised and unsure what to do. He let her play around a bit and then stood up and wanted to squeeze her. It was sweet to see him want to show her affection like that.

He's talking about bubbles and pancakes and loves to make pretend pancakes in the bath.

I could probably keep going, but this is enough for today. Thank you to the many friends and family for your support and love on my rough days and on the good ones, too.

The Short Bus

2008-09-12T13:20:00.001-07:00

Before I had Carver evaluated the first time, almost a year ago, I had to prepare myself emotionally to hear potentially heart-breaking news. I wanted help badly enough to move ahead and really haven't looked back. I have felt excited and encouraged by our help, almost all the time.

Today I took him to be evaluated by the school district. The preschool is at a different elementary school than the one his sisters attend and I wandered around a little, trying to find the office. We did a vision/hearing screen first - wow! I had no idea they were so creative testing vision for non-communicative kiddos like Carver. She dropped red felt-like balls (like those fuzzy kind you get at craft stores) of various sizes, starting from golf-ball size down to a pea size and smaller. She watched to see if his eyes followed the drop. Interesting, huh? Then she had him point to dots of various sizes, each card had a smaller one than the one before. He found them all! So he passed that. The school psychologist met us there and led us back to the preschool area, the special ed portable.

It had low tables, kitchen toys, a room full of toys, even a TV and a couch. There were 3 women waiting for him, who all greeted him warmly and jumped right in to play/evaluate. One was a language pathologist, one was a physical therapist, the other was evaluating his cognitive abilities. I get the sense that this last one kind of makes some decisions about placement with teachers and whatnot. I can not say enough how wonderful each of them were. I have profound gratitude and respect for those who work in special ed, not only for the kids they bless every single day, but for the parents. It is an overwhelming feeling to see how these adults absolutely loved my son while we were there. Their patience and willingness to play with him and work with him on his terms was amazing. I watched a little of the evaluation, while the school psychologist got paperwork ready for me.

It was the same sorts of things I'd seen before. Asking him to string beads, make towers, point to pictures, identify pictures, catch a ball, throw a ball, jump off a chair, answer questions, use a marker, etc... The only surprise today was that he CAUGHT a rec ball one the first try! I was shocked. I had to tell them it's very unusual, don't give him too much credit for that! I answered some of their questions, as well. Then I filled out forms about his self-help abilities, social interactions, things that they can't see in a setting like this. That was hard because I want to be honest, but I know my perspective is skewed. Some areas I'm sure I gave him too much credit, some I probably short-changed him. That perfectionist in me is hard to shake, but I did the best I could. After all that, we reviewed the results with each specialist at a table while Carver had a snack.

Here's a generic example I found online of how it works (statistics 101), but also a little backwards in terminology. I'm going to focus on the left-hand side of the curve, representing delays in development. The middle sections "same as others" represent "average," then that next area labeled "probably" is called "moderately delayed" and is between -1.5 and -2 deviations from the norm. The "definitely" section on this curve is known as "severely delayed" or more than a -2 deviation.

His best area is social, which makes sense. He's incredibly social. Even in the normal range for his age, on the low end. Right around a -1.3 or so. But tested as a 3 year old, he might fall off into the moderate delay category. Everything else, gross motor, fine motor, expressive and receptive language was about -2 deviation or representing a "severe delay." To qualify for the preschool, you need to have 2 or more in the moderate section OR at least one severe delay. So he's definitely in!

We talked about preschool options a bit, they have two afternoon classes so the class size is smaller, but the younger kids (nappers) are usually in morning, so we're going to wait and see what they decide to do, based on personality of the classes and teachers and sizes and all that. I should hear from a teacher soon. Preschool is Mon-Thurs in either case. I'd prefer mornings since he IS still napping about half the time and because I really believe it'd be much more effective if he wasn't super grumpy. The bus WILL come to our house and get him, if I'm willing to do it. He has some issues with separation sometimes, but I really think he'd LOVE to be on a bus and that it's important for him to feel grown-up in that way.

I should be ecstatic. This is what I've been hoping for these last months. But instead, I came home and cried in the bathroom for a minute before going to pick up Ellie and Grace from my friend's house. And still, Melissa got to see me breakdown again after Ellie ran out to the car with Carver. I don't know what happened, but it all just hit me again. I've been so focused on getting him the help that he needs that it hadn't all sunk in til just then. I felt all that heartbreak for my little boy, that he can't do things that other 3 year olds can, that it might be a LONG time til he can read and tie his shoes and not drool. I hurt for the future that is still uncertain for him. They asked today if we'd done any neurological testing and indicated that after we get him settled in the preschool, it might be a good idea to run some tests and check for medical conditions causing his delays. I am prepared to do that, but it hurt to think of all the issues and struggles we haven't even faced yet.

He takes his chewy to the bus stop and kids ask almost every day (sometimes the same ones every day!) what it is, what it's for. He's going to ride "the short bus" and have special ed. He will wear a special suit under his clothes. The older he gets, the more he's falling behind. Will he always be labeled? Will he fit in with other kids? Will they be mean to him? Will he get the help he needs? Can I do this?!

I have been totally taken by surprise to feel this way and decided to let myself have a minute or two to cry and mourn for what we have missed and what won't be. But then I'm going to pick up where I left off and be the advocate that Carver needs, getting answers and help and loving this boy the best that I know how.

The chewy and more

2008-09-10T12:03:00.000-07:00

Today was therapy. We played with the dollhouse and Carver and Ellie had a blast together playing peek-a-boo through the windows. our ST commented on Carver's extended attention span playing with her. It takes some motherly intervention sometimes, but the girls can be very helpful with him!

We talked about limiting the "yes/no" questions and trying to prompt Carver to say words on his own, now that he's imitating us so much more. Which he is!! Almost everything we say he tries to copy. His sounds are getting more clear and you just see him watching our mouths and trying so hard to get it right. He thinks he's doing something great and we're excited to see growth happening. We've really turned a corner in that way.

She said that his language is currently limited to "here and now" which works to his advantage since it's easier for people to understand because there is ALWAYS context for his words. So what might seem to be a challenge to overcome definitely has a "silver lining."

Getting him ready for school will include helping him express what he needs and wants in multiple ways. She also suggested helping him "show me" or ask in another way by telling him "my ears didn't understand that" rather than placing responsibility (AKA blame!) on him for a lack of understanding. She said that self-esteem really starts forming in these years and we don't want to make him feel like he has problem that he can't overcome.

RECENT SUCCESSES:
At the park last week during Lydia's soccer practice, he was driving with the steering wheel on the big toy and I asked him if he was driving. He looked delighted and said, "mm-hmm." Then thought a minute and said, "bus." Score for Carver!! Imagination, language, answering question, playing with me - it was all there. It was a happy mom moment. He also used his handy string to give the bus "gas." I LOVED it!!

He said, "my chocolate chip" the other day. Really, chocolate chip is one word since he doesn't know they are separated. But the my+ phrase is so wonderful to hear! It's a classic toddler expression, too, huh? :)

I've been working on limiting the "yum-yum" and especially encouraging the chewy tube, which we call his "chewy." Here's a picture of it. It's 1 foot long.

And here's Carver with it in his mouth. I think he usually prefers to stick one end in his mouth like a straw and he DEFINITELY prefers it loose to being tied in a knot.

His speech therapist said that using it at all is a step up from the pacifier, even though having it in a knot around his wrist would be helpful for school. I'm trying to bring it to the bus stop (that's 90 minutes of my life every day, remember) to get it into routine. And I hadn't even thought of this, but the ST said that was perfect because if I keep working on that association, it'll be really natural to send Carver with it on his own bus in a month and a half. It's nice when things work out like that, huh? I'll pretend it's because I'm such a wise mom. :)

Kids at the bus stop DO ask what it is and it's a good introduction to the many issues surrounding kids with special needs. I just say it's for him to chew on instead of a pacifier. That makes sense and answers their question directly. Works for me!

Carver's climbing into his booster SO well. Today was a hiccup and he didn't do so hot when our ST was here, but otherwise that's helping a lot. I'm trying to teach him to wash his own hands at the sink. Another good step in the direction of self-help.

Friday is the district evaluation!! 2 more days and I can get a whole lot more answers, things to plan on. Oh, and a new learning curve comes into play now that I've got the hang of the SKIP program. It's about time to up my sensory education a notch or two!

sunny day in the sandbox

2008-09-03T12:48:00.000-07:00

Today we did therapy outside and it was BEAUTIFUL. Finally the summer days I've been dreaming of, right after school starts! :)

We practiced walking on the edge of the sandbox and he did great. We practiced concepts like under/over, in/out. Mostly it's a great sensory activity for him. I asked Ellie to give him some space while he walked on the wall and he repeated "space" 10 more times, delighted that he could say it himself. What he thinks it MEANS is another story, but the word is a great start! :)

Ah, the SPIO suit saga continues. But I think we've reached a happily ever after. The red one is great, but the top started to slide up over the tummy (reminds me a little of pregnancy...). One day at the park, he wore his SPIO and I started to hear little snagging sounds on his pants while he climbed on logs and immediately panicked about our $200 lender. I whipped it off him and discovered a pulled seam in the top at the same time. YIKES! I talked to our ST today and she called the SPIO rep and they're getting us a new top (their fault, not mine on the pulled seam - whew!) and they don't mind delaying billing til January when our insurance gets upped a notch. At least I am banking on that increase in benefits. ANYWAY, next week after we get the new top, we'll be giving the SPIO suit another go-around and see what we think. She said to watch to see if it helps his posture at all - I think I'll research what it might help so I can pay better attention. I really like the idea of something helping him all the time - especially at preschool - so I am happy to try again.

Also, our ST recommended talking to the pediatrician about the curdle-y milk spit-up thing. She thinks it's worth investigating, especially if it might a reflux issue fueling his desire for milk products. I'll ask in October.

I let Carver play in the bubbles in the kitchen sink this morning and learned a couple new tricks to curb the mess. Kind of embarrassing that I didn't think of these sooner...

1. use a lot of soap so you don't need as much water to fill the sink with bubbles.
2. don't give him full size cups - just measuring cups and spoons

It made SUCH a difference in the mess. He still tried to put his leg in a few times and dunked his head in the bubbles once or twice, but the mess was manageable. I don't mind changing his clothes afterwards, it's the water streaming down the cupboards and puddling on the chair, rug, floor, counter, etc... that drives me nuts.

Carver learned to say "peach" this week for his yogurt and is so proud of himself. It's wonderful to see how excited he is about words. He even bit his lip for the "f" in "off" after watching and practicing and trying so hard. What a challenge to have everything take so much effort. I admire his efforts to do things like his sisters and friends, no matter how hard it is for him.

SPIO suit

2008-08-27T14:49:00.000-07:00

SPIO stands for "Stabilizing Pressure Input Orthosis" and is used to provide all over pressure for children with sensory issues. It works for both hyper- and low- sensitivity and is designed to give that steady pressure/input all day so the child feels more organized and ready to tackle other things. The pressure also helps kids like Carver have a greater sense of body awareness. It is in two pieces, a shirt and pants. They overlap a lot and stay in place great.

It is generally recommended to give a 2 week trial, every day all day under clothes. Here the pictures are without so you get an idea of the super tight "super suit" concept. I ordered one back in July and have 90 days to try it out and send it back. So we're taking advantage of the cooler weather to give it a shot. Honestly, I can't tell a difference. Not this week anyway. I haven't given up yet, though. I'll keep trying it.

The black suit is the official SPIO suit. It costs $200 out of pocket or $380 to insurance. Ouch!! It has to work pretty well or it's not worth it to me. Hence, the red suit. My fabulous aunt Joann is a whiz of a seamstress and she duplicated our black one in red. The lycra is a little thicker and tighter, but it went on okay. And for less than $10, it's well worth a try! I have to say that black isn't as noticeable, but the red is pretty fun. I wonder about a white shirt for church days... :) hard to imagine those red sleeves peeking out of his short sleeve white button-up, huh?

The pictures aren't great, but let's face it - Carver isn't photogenic. Hardly ever do I get a decent shot of the kid. So here's the best we can do!

motor planning and more

2008-08-27T09:09:00.001-07:00

Speech was yesterday. She brought the evaluation results -

Auditory comprehension: standard deviation -1.67
Expresssive communication: SD -2.07
Total Language: SD -2.07

Qualification for therapy is determined by standard deviation, beyond -2 is considered enough in one category. Less than that and you'd need to qualify in more than one area. He might qualify in other areas, as well, but this number alone is enough to guarantee preschool. Reading her report was sobering. It was a good reminder of how far we have to go, of how much more I could do with him. I'm grateful that school is starting soon and that our routines are ready to be revamped. I'm going to try to schedule in more Carver play time.

I had him eat yogurt when Christina was here (something she'd wanted to see in the past) and it was really good. I use a dry washcloth to wipe his face and it helps him feel the drips and mess. He is getting better at feeling that, it's just hard for me to always be attentive to him when he eats. Christina also noted that carrying him to the sink to rinse him off afterwards is not only going to kill my back, but misses the opportunity to practice Carver's self-cleaning skills. Giving him the washcloth to wipe his own hands and face extends the snack (and therefore attention span) and also gives him a sense of confidence and an important skill set. Along those lines, having him climb into his booster seat is important. Of course, these things are difficult to take the time for in a busy house. But efficiency needs to take a back seat right now!

We did play-dough, his favorite thing. She had him open the lid and said... "OH"... and he finished with "-pen." Or kind of. Really exaggerate the OH. I can do that!

She suggested sports wrist bands to wipe drool again. I'm going to try to pick them up next time I'm at the store. At least I can have a towel handy. He's always stealing my kitchen ones anyway.

Poking 1 finger in playdough to isolate those muscles. Really let him do things himself. I need so much patience!! :)

She asked about the little milk curdle he had in his mouth, the last hold-out from years of spitting up. I could tell she was surprised and curious at what caused it. I'll bring it up AGAIN at his well check. No doctor has ever expressed interest or concern about it, no matter how many times I bring it up. It's better than it used to be. Now it stays in his mouth at least.

I asked about his inability to communicate awareness of the past. She said it was all connected to his poor motor planning skills. 2 step play builds cognitive awareness of sequencing, knowing what comes before and after. Interesting to consider how interconnected our senses are and a specific example of how play is work for babies and toddlers. Most babies learn these things naturally, without extra effort (Grace, for example!) but Carver needs to be taught each skill separately and then practice. Talk about exhausting for him and for us! He is doing so much better at understanding "now" and "later" - I can see how we're working towards remembering the past. Also, she suggested family photo albums of vacations in the past, etc... Good reason to print another shutterfly album!! :)

So I have a lot to work on. And I shouldn't just be blogging about it! Back to work!

the flip side

2008-08-25T12:23:00.000-07:00

I haven't really done more than speech therapy reports here. Those are good times, where I feel direction and hope for Carver's improving communication. There are many, many other times that things are just HARD. Without intending to complain, here's the flip side.

Carver always needs something in his mouth - pacifier, food, gum, sippy cup. It's an exhausting balance to try and fill that very real need with age appropriate behavior while maintaining a responsible calorie intake!

He doesn't play by himself. He can keep himself busy occasionally, but very rarely is he doing something I approve of. It is difficult to fold laundry, clean bathrooms, make dinner because he wants my constant, undivided attention. I know that some of that must be my own doing, giving in to his demands too often. But he lacks skills to do imaginative play on his own, patience to do fine motor projects and self control enough to stay out of trouble. I'm not sure how to manage this one.

He is very messy. He wants to eat all the time, as I've already said. So I am constantly battling over food. Once he eats, he routinely smears his yogurt on the table, dumps his cup of milk, dips and tears, throws, etc... It's frustrating to say the least. By the time I've cleaned up snack #1, he's grazing for more milk, gum or snack #2.

Today I tried to do some cleaning - getting to things that never get their turn around here. I managed to do more than usual, but had to turn on movies and in the end, I'm frustrated because it was such a battle to keep him off the wet floor, out of the piles I was sorting, etc...

It has not been an easy day. But we've had worse. Sometimes I feel like it is very hard to be Carver's mom. But he's so sweet taking me by the hand to invite me to play with him. I know that doesn't last! He's very into Mommy right now, which is fun and very tiring. It makes me grateful to have preschool to look forward to. He needs the attention and therapy there as much as I need the break around here!

Evaluation Day!

2008-08-19T10:23:00.000-07:00

That means that our ST came with her materials to evaluate Carver in his receptive speech (what he understands) and his expressive speech (what he can communicate to others). She'll bring the results back next week. She had him point to things in her book and it was really interesting to see how well he did identifying things UNTIL she got to a page and said, "what do we use to watch a movie?" and he was supposed to point to the TV or "what does Mommy use to cook dinner?" for a pan. He might have been tired, but he wasn't getting those at all. I wonder why. Identifying big and little is also nearly impossible for him.

I also made a list of the words he says, both for the words themselves and an idea of which sounds he makes. I think he's at about 50-60 words, but I keep remembering other words, too. Lots of those he signs, as well, and lots of them are words only Derek and I understand. I get excited about our growing list and then remember occasionally that he very rarely puts any of those words TOGETHER (just bye-bye + word sometimes). We still have a long road ahead of us, but I love hearing Carver's words and his inflection in particular.

He's trying to dress himself right now. He holds his foot with his hand to put it in his shorts. It's so interesting to watch, adorable and heart-wrenching at the same time. It's just so hard for him to tell his foot where to go that he tries to help it out. We can't help but be excited for all these little signs of progress!

Carver is really interested in colors and said "orange" today during therapy. I'm excited that he's understanding that there are names for the colors that he sees. He also LOVES the Letter Factory movie. It's big on the list for his birthday in October. He sees letters now and says "ck, ck, ck."

And how's this for cool? Carver's experience with being evaluated last fall and not qualifying, then qualifying in the spring in 5 areas made them rethink their evaluation process. Children's Therapy Center has changed their evaluation and training because of him and a couple other kiddos like him! good for them, good for Carver!

More to add to our bag of tricks

2008-08-13T09:35:00.000-07:00

Speech report, speech report... this is SUPPOSED to have pictures, but our camera DIED today. What will I do without it?!

Oh, well. Here's what we talked about today:

GUM - we're ready to try this again (he loves it but played with it after awhile and I got more than a little tired of picking gum out of things). She suggested 1/2 piece sometimes, 4 pieces other times for different strengthening of the muscles in his mouth.

CHEWY TUBES - just a therapy resistance band cut into 1 ft. length, tied in a knot at one end. He can wear it on his wrist, chew on either the knot or the other part. It's more age appropriate and all that. So we have two colors: red is softer and the blue is more resistant. I'm not sure which he'd prefer because he WILL NOT even touch them. He has an instant aversion to them for some reason. Grace knew right what to do with them so I'm going to let her show her big brother how fun it can be. :)

NUK BRUSH - these are common enough and another alternative to the pacifier. I got one of these from our ST, too.

BACKPACK - we loaded up his backpack today and he loves it. He loves putting things in it, taking them out, wearing it around. He went to the door and said, "buh-bye." He gets to practice pushing and pulling and using a zipper. We'll be playing backpack a whole lot more.

PLAY FOAM - I finally found this at Target and it's fabulous stuff. The girls love it as much as Carver. It's exactly like playing with rice krispie treats when they are still warm. Cool stuff, more resistant than play doh and less messy. It leaves a little gummy film on the counter/table and the beads sometimes turn up after the fact on a shirt or something, but otherwise it's perfect.

TOOTHBRUSH - I finally got that vibrating toothbrush yesterday and Carver LOVES it. He's going to break the bank buying new vibrating toothbrushes. His ST said it's wonderful for his mouth, on his lips and cheeks - all over. Let him have it all the time, maybe one for actual brushing to leave in the bathroom to stay clean and another one for anytime.

I think that's it. We talked a bit about potty training, where he's at and how it's good enough for now. He wants to sit on the potty, wipe and flush. But the feeling the need is obviously not there. she encouraged him to climb into his booster himself, which he should be able to do with some practice. It's so easy to just do those things for him. It's BETTER to let him learn to do it himself.

Next week she's going to do the evaluation, preschool language testing and speech related tests. This is the evaluation that will go towards his preschool eligilabity. Hopefully he'll be grumpy and uncooperative, right? the school district will evaluate him in the other areas (motor skills, etc...) closer to his birthday. I'm not too worried about next week. It'll be nice to have everything decided and squared away with preschool, but until then I'm just going to be grateful with what we've got and all the progress I see in Carver. He said "dirt" out of the blue yesterday and took turns so nicely at the park with our friends. I couldn't ask for more!

3 cheers for preschool!

2008-08-06T12:56:00.001-07:00

Today was speech therapy - I love these days. I feel all fired up, full of new ideas and energy to tackle our problems. Our ST (speech therapist) brought an OT (occupational therapist) to help zero in on the sensory issues. GREAT ideas came out of the talk and play. First of all, Carver just eats up all the attention. He loves these friends who come to play with him. It's hilarious to see him show off and so good for him to have special time. He wanted to wear Daddy's hats and it was so interesting to watch him try to feel that it was on even though it was so loose, searching for a way to make it tight. I love seeing more and more confirmation that his "diagnosis" is perfect.

Here's the tips/ideas that came from today:

pictures of our routine - ST brought laminated cards she'd made from pictures I sent of our daily routine to put on a velcro strip. I can put them in order, let him pull them off and see what's coming next. It's not attached to anything yet, I'm working on how to use it on the go.

thick drinks from a straw (strengthen muscles, satisfy oral cravings). Maybe use frozen fruit/ice to reduce calories. :)

satisfying snacks - crunchy, chewy, spicy, etc... wasabi peas, frozen veggies/grapes

compression exercises -saying "squish" as you press in and down with your hands on chest/back

inflatable seat cushion - gives opportunities to wiggle and sit in his place ($3 REI for an inflatable camping pillow)

heavy backpack - 5-10% of his body weight, builds muscle tone and body awareness

play with texture - rice/beans in a container to scoop, feel (rotate for variety). Can use a sheet underneath to contain the mess and make it easy to clean up.

"chewy tube" - Provides more stimulation, more age appropriate than a pacifier. ST will bring it next time.

rubbing his face, cheeks - stimulate muscles, kind of "wakes up" his face.

jumping - I'm still going to keep working on it. Off the couch into cushions, the stairs, anything.

vibrating toys - on his cheeks (when are you going to get that vibrating toothbrush, Rachael!!)

We talked about brushing today, as well - a technique used more for hypersensitive kids, but one that might help Carver. You use a small hand held brush 5 minutes at a time, every 2 hours-ish for 2 weeks or so. The protocol is taught by the OT and needs to be done correctly to be effective. It triggers the brain to release neurochemicals that help organize these kids. It might be an option later, but the spio suit (more on this soon) is a better approach for school situations because it doesn't require any special training. He'd just wear it under his clothes and we'd be set. So we're going to start with the suit and keep brushing as a back-up plan.

They noticed how much more he's watching our mouths to imitate sounds (YEA!) and his efforts to speak continue to increase. He was drooling a lot. We changed his shirt just at the start of therapy and still, there was a good 4-6" band under his chin at the end of the hour. I think that he drools most when he concentrates on other parts of his body. He worked hard today, just playing around with them. He wanted his "yum, yum" (pacifier) the last 5 minutes and found it on his own after begging for awhile and searching high and low, so I let him keep it. He was exhausted and is napping now.

He handled his redirection very well today when he was sitting on the piano keys. He found a "wheels on the bus" book with the song printed at the end so marched straight to the piano and wanted to play it. how cute is that? cuter than when he wanted to turn around and sit on the keys. No tantrums over the redirection, though. that was great. He handled the "no" for a movie better, too.

But the best news was.... drumroll.... our ST said he's a shoe-in for preschool in the fall. She's be VERY surprised if he didn't qualify. The district rep who came in the spring indicated to her that he would be a great candidate. HURRAY!!!! I've been hoping and trying not to hope and now I just feel so grateful and excited. You talk about school around Carver and he says, "me, me!" with his arm up. And a bus that comes to our house to get him? It doesn't get better than that. AND the good news just keeps coming. After he meets all his goals and doesn't qualify for the therapy aspect of the preschool, he will have first choice to become a peer model and STAY at the preschool til kindergarten. We'll have to pay at that point, but I don't think it's an expensive program. Other districts don't let the therapy kids come back as peer models so I am thrilled. Maybe this is one of the reasons we felt so good about this area - maybe living here is all for Carver.

My heart is always full after speech therapy. It's as much for me as it is for Carver. I don't always get to try everything they suggest because of budget/time constraints, but I do what I can. I can't say enough what a great program this is!

Sensory Processing Disorder

2008-08-01T17:04:00.000-07:00

You can read about SPD in detail online here and here. But those are general explanations. For some, this means hyper sensitivity to their surroundings, but Carver has LOW registration. Here's what that means for our little boy:

Carver has difficulty processing and organizing what he's getting from his senses, but not just the 5 we all think of. These are the 3 senses that most relate to Carver.

Tactile is somewhat straight forward – relating to the sense of touch. Recommendations include vibrating toothbrushes, deep pressure activities, using puffs and loofahs in the bath, shaving cream, lotion, squeezing playdough, playing in the sandbox, with containers of dry beans/rice/pasta. This system has 3 majors kinds of difficulties – “tactile defensive” or oversensitivity, “tactile seeking” which crave touch input, and “poor tactile discrimination” which have difficulty with hand skills/fine motor. Carver fits into the 2nd two categories, which must be a possibility, as well.

The proprioceptive system is the input from sensations related to movement of the muscles and joints. It tells the body where the limbs are in relationship to each other without seeing them. So his movements are clumsy, stairs are difficult because he can’t see his hands, he doesn’t pull down on the back of his pants to take them off, he probably likes mouthing toys because he’s looking for more input than the rest of his body is supplying. Treatments include big physical activities, pushing and pulling heavy objects, hanging from a bar, jumping off things, climbing on parents and furniture, tug-a-war, blindfolding activities, etc…

The vestibular system is similar, but more about where we are in space – gravity and our surroundings. I see this in Carver in how he gets nervous up on the playground equipment, his clumsiness, poor bilateral motor skills (coordination between right and left sides of the body), high level of activity making it difficult to concentrate on a present task, poor auditory processing skills. Activities for treatment include swimming, gymnastics games, jumping, trampolines, swings, blanket “burritos,” rocking, rolling up and down a hill, bike riding on slopes and flats.

So there you go! We just love him to pieces, we have good days and bad days, but we are hopeful that we're headed in the right direction.