Sunday, December 27, 2009

Going Private

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!

Monday, December 7, 2009

Wake-up call

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!

Thursday, November 5, 2009

Lesson #5: A Boy and His Thumb

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.

Tuesday, October 20, 2009

Vision Therapy?!

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.

Thursday, September 10, 2009

Dr. Glass, pediatric neurologist - Part 1

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.

Tuesday, September 8, 2009

Back to Preschool 2009

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.

Tuesday, September 1, 2009

Summer recap




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!

Monday, June 15, 2009

Endoscopy Day

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.

Wednesday, June 10, 2009

Gastroenterology

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.

Thursday, June 4, 2009

Lesson #4: Mother knows best

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!

Thursday, May 28, 2009

Lesson #3: Love

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

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....

Tuesday, May 26, 2009

Oh, dear

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?

Wednesday, May 13, 2009

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.

Friday, May 8, 2009

The Black Mamba

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!

Tuesday, April 28, 2009

Thunder

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.

Thursday, April 16, 2009

Things I don't want to forget

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!

Thursday, April 9, 2009

routines, separation anxiety

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!!

Tuesday, March 24, 2009

Parent Teacher Conference

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!

Monday, March 16, 2009

Potty success


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. :)

Wednesday, March 11, 2009

Lesson #2: Don't judge other parents


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.

Saturday, February 28, 2009

Shnuggles


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.

Saturday, February 21, 2009

Lesson #1: Letting go of the guilt


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.

Thursday, February 12, 2009

heroes on the basketball court

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.

video

Monday, February 9, 2009

the smell of drool and other mountains to climb

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!