Thoughts on therapy

This is Carver with a favorite physical therapist at preschool.  She really loved Carver and he really enjoyed working with her at school.  I have been so grateful for exceptional therapists over the past 5 years - and almost all of them have been truly outstanding.  I gotta say that up front and then hash out the problems we've faced.

Carver started out in a government sponsored program that covers birth to age 3.  It's free, in house therapy.   He got 30 minutes of speech once a week.  Then he graduated to the school district's program, which is also free and government sponsored.  Children with severe enough delays qualify for therapy services in their school district.  Carver qualified for all services offfered.  I was grateful and devastated at the same time, so I had my first total meltdown...  I came home and sobbed off and on all day.  This happens from time to time and I really belief it's healthy.  It's like a grieving process and an accumulation of stress and anxiety that sometimes reaches a breaking point.  It happens from time to time and then we just dig in and get back to work.  At this point, it was a huge wake-up call to see how truly behind he was.  Our district has a developmental preschool and that's where Carver got all his therapy.  I wasn't impressed with the speech services and realized that he wasn't getting one on one help, so I pursued private speech therapy when Carver was 3.  We found a fantastic therapist who helped him once a week, then twice a week for maybe a year?  I drove 45 minutes each way and brought his little sister along... twice a week.  Insurance paid for the first 30 visits, I think.  We ran out of visits and started shorter sessions to save money.  Then we ultimately had to quit once we were paying out of pocket.  At around $100 a session, you can imagine how therapy adds up.   For awhile, we also did occupational therapy at a different location, 30 minutes from speech and 30 minutes from home (they make a triangle).  The summer before Carver started kindergarten I was determined to help prepare him for school, so I would load up all 4 kids and lunches and start the trek.  We'd do speech, run errands, do OT, stop at a park and head home.  Every single week!  We also started paying out of pocket during this time as our insurance changed again.  The routine was busy, expensive and sometimes exhausting for all of us.  When Carver started kindergarten, I decided we were done.  I felt strongly that I needed to enjoy the half days with him while I had him at home and not run us ragged and broke chasing more therapy.  I was also expecting our 5th child and didn't think I wanted to keep up the routine.

BUT.... during those years of private speech therapy, the ONLY developmental category that Carver made "catching up progress" was in speech and language.  He generally makes progress, but not even at typical speeds.  He is ALWAYS falling more behind.  Don't think about that too long, it's a horrible feeling... like sinking into quicksand.  In speech and language, he was actually catching up.  Is that coincidence?  Maybe.  It's impossible to know.  Speech can explode when a child is ready.  Or it could've been the years of therapy.  I tend to think it was in large part due to his therapists and our efforts to practice at home.

I read articles like this one from time to time and know that it's all true.  Therapy works.  We've seen it happen in Carver's life.  But that family must have spectacular health insurance or a boatload of money in the bank for such things.  Therapy is EXPENSIVE.  At 40 hours a week, our benefits would've been used up in a single week.  When did that mom do her grocery shopping or her laundry?  She had other kids - did she volunteer in their classrooms?  Did she do birthday parties for them?  Extra-curricular activities?  How did she do it all?  I read those articles and feel highly inadequate.  It's impossible to put a price tag on helping your child succeed, but at the same time, the resources have to come from somewhere.  We just can't do what that mom did.

In the end, I have I prayed a LOT.  Over and over again, struggling to decide when to do therapy and when to stop.  I felt so peaceful about our decision to end therapy as Carver started kindergarten.  He has WONDERFUL therapists at school that meet with me, provide homework and advice and support.  They love him and think about how to help him succeed.  It has to be enough.  I do the best I can at home and never feel so good about myself as a mom as when I'm helping my kids learn.

It has been good for Carver not to be loaded up and taken too many places.  He is a little boy and needs to be able to play.  He's learning to play by himself and with his sisters, help out at home and have playdates with friends.  We've done swimming lessons in the past, which are cheaper than therapy per hour and provide incredible sensory input and physical therapy for him.... not to mention giving him real life skills!  Now that he's in 1st grade, he needs time to do homework, learn to read and we need to eat dinner as a family.  Where's the time for therapy?

Sometimes I think that if money were no object, I'd put him back in private therapy in a heartbeat.  But it's more complicated than that.  Everything with him always is.  :)

Revival :)

It's been YEARS since I posted here, but a friend of mine from years ago started a blog about her sweet boy with CMV and it reminded me of how wonderful it is to record and remember the challenges and miracles of having kids with special needs.  I can get overwhelmed with the daily grind, but writing helps me see the bigger picture once in a while.  And I need that more than any of my readers (all 2 of you - ha!) need this blog.

Sorry not to fill in the last 2 years with perfect detail.  Not gonna happen today!  Here's where we're at right now.

FIRST GRADE.  Wow.  Once I remembered that kindergarten is really just practice school, I stopped worrying about how that would go and started worrying about 1st.  :)  Kindergarten was a lot like preschool had been - he was pulled for OT, PT, Speech and Special Ed.  He still spent time with his class and went to PE, computers, music, etc...   He loved school.  Morning kindergarten was probably a good fit for HIM, but hard on me since he came home tired and it was a LONG time til dinner/bedtime.  He did swimming lessons all year with Grace and was making great progress - but he doesn't swim at ALL like other kids.  We're working towards "not drowning" sorts of skills.  He could swim the short end of the pool if he didn't turn around part way there to reach back for his teacher.  :)  He loves to dive to bottom and he finally learned to jump into the jets at the deep end.  Just the physical ability to jump was a hard thing for him at the beginning, so jumping into the water made my heart happy every time he did it.

I have found that I can measure his progress by summers.  At the end of his first year of preschool, I was in an absolute panic thinking of him home all day - all summer.  Those were hard times.  But now we have routines that work and he is much easier to keep happy.

So this year, he has a perfect teacher.  The kind that is loving and kind, runs a smooth and organized classroom and communicates well with parents.  I am so grateful.  She advocated for more time in the "star room" (resource room) with a couple equally wonderful teachers in there.  His day includes an hour of math and an hour of reading/writing in the star room.  He still gets OT, PT and speech at school and sometimes a social skills class, too.  He isn't in his main classroom a whole lot, but doesn't seem to care or notice that most kids just stay in 1 class all day!  I wonder when he'll realize how different he is and it makes me sad to think of it.  His resource teachers and therapists all talk about how hard he works, how cheerful and happy he is.  And I shake my head in wonder because that's not how he is at home most of the time!  They also talk a lot about how easily distracted he is, how it's hard to keep him on track.  Some other time, I'll write about ADD and SPD....

Big accomplishments... he can write his own name.  That we can READ!  He's been working on that for a good 4 years now.  And it's absolutely miraculous to me every time he does it.  And he is learning to read.  It's taking longer than most kids, but he remembers sight words best and with prompting can sound out words (especially if he actually LOOKS at them).  This is huge.  He learned to ride his bike without training wheels... sorta.  It's incredibly scary.  He rides very fast and doesn't look where he's going.  I should probably consider a full face motorcycle helmet for this kid.  :)  He wasn't 100% solid at the end of the summer and now it's yucky outside, but next summer should be a good year for biking.  I think it'll be good for him and I'm excited about family bike rides.

More to come on homework, ADD, routines that work, things I should've known or done differently...

the BEST birthday party ever

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

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

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

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

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

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

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

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

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

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?!

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

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

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

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

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

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

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

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.