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.