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Tuesday, February 26, 2008

I've been wanting to post photos of what I've painted so far -- Olivia's room is done! -- and ask opinions on more painting to come, but it's just going to have to wait a little bit longer while I get through one day at a time over here.

We finally met for Sean-Peter's IEP (Individualized Education Program) appointment yesterday, our second attempt as this pesky winter keeps giving the schools snow days around here. No surprises, really: an IEP just gets everything you've already talked about written down official-like so that services can start. Right now he's scheduled to start preschool tomorrow; it was going to be today but I already had him and Olivia scheduled for dental appointments this morning. Except Sean-Peter ended up not going to that, either, on account of some croupiness he decided to come down with last night. It's snowing like the dickens right now and isn't supposed to let up anytime soon, so time will tell if he actually starts tomorrow or not, croupiness or no.

Did I mention that Olivia has two cavities? Two cavities. Conner and I had our own check-ups last week and came away with one cavity a piece. I can't remember the last time I had a cavity. This is Conner's first. Me thinks our teeth didn't like Italy too much.

But two! And one of them is pretty deep: he's hoping he can just fill it and not have to put on a cap. Poor little thing. And there goes our budget. Every month there has to be something that comes up: February was heating issues; I guess March it's dental, as these things are not completely covered by insurance like they were when we were overseas. Then again, it kind of seems like we got what we paid for...

I'm still trying to wrap my mind around all the facets involved with Sean-Peter and his speech issues. My only real concern going into the IEP, barring any surprises, was that apraxia at least be mentioned as a possibility. Really, we just need to get him started with some therapy -- which is needed to identify things like apraxia to begin with. But having it down in writing that "apraxia has not been ruled out" may make a difference now in what he qualifies for insurance-wise when I go back to get more referrals for off-base care during the summer season. And if he is ultimately "diagnosed" as being apraxic, everything I've read recommends at least three to five therapy sessions per week for children with verbal apraxia. The pathologist at the preschool confirmed this. But while he will receive one-one-one therapy sessions with the pathologist at the preschool, the majority of his time will be spent in the classroom setting. This may not suffice if he truly is apraxic.

After we were talking and I raised the concern of this phrase "apraxia has not been ruled out" as making a difference in how much care our insurance might cover, one of the providers pointed out that this was covered in the assessment we had done at Therapy Connections, the private company that conducted his first speech evaluation and the one the school district had piggy-backed on to save time and resources. And it occurred to me that I had never actually seen the report from that evaluation. I had spoken with the pathologist on the phone about it, but she had sent it directly to the school district, per my request, and I had never asked for a copy for myself. Why hadn't I? I could almost hear them ask the question, and frankly, I was asking it, too.

Seeing the report and the raw numbers that describe my son was shocking. His Auditory Comprehension was at an age equivalent of 2 yrs and 4 mths. He had just turned three at the time. His Expressive Communication was equivalent to that of a child 1 yr. and 7 months old.

I am certain that he has made strides since then, however small. And, of course, there is the idea that they are determining these numbers based on one hour of time with my son. But it was still so disheartening to see it all spelled out. I have been preparing myself for this long road we have ahead of us, but seeing it written down felt like I was viewing the map for the first time, and that road runs right off of it.

I still have so many unanswered questions and phrases running through my head. Sensory processing... does that relate to his picky eating habits and his apparent texture phobia? And why doesn't that ever come up in discussions about my son? I am understanding more and more how these things are all interrelated, and it doesn't seem to make sense to treat them in isolation of the other. Yet no one I've talked to about it thus far acts like his picky eating has anything to do with his language ability, or that the two even belong in the same conversation. I'm not even sure why I think they do, or what you're supposed to do about it if they are, but for some reason I think it matters.

I recently learned of a local playgroup organized by a mom with an apraxic child. This is just one of many avenues out there available in this city to learn more about this invisible thing that seems to have gripped my son. It can get overwhelming, but right now I think we're doing the important thing of just getting started and keeping the discussion open with professionals and parents alike. I'm still waiting for that one person to listen to my son jabber on in that unintelligible way of his and say, "Oh, yea, I knew someone who was just like that ..." and I'll be on the edge of my seat waiting to find out what happened next. In the meantime, I guess we'll keep trying to finish that sentence on our own.

7 comments:

Karen said...

Hey, I've missed you!! I was just thinking earlier...I haven't seen Jolyn around in a while! Things are crazy, eh? Thanks for keeping us updated on your little guy!!

Carmen said...

Hang in there. When Jake was so sick and I was at the end of my rope I got a journal and I sat down and said, "God. this is my praise journal. I am going to write down everything going on, everything I am learning, every small or large step, and trust that you are using all this for good. I already praise you for the amazing things that will come from this and the way in which you are going to bring us through this." It kept my mind focused on the positive, and it gave me hope to go back and read about progress.

Thanks for the update and I can't wait to see Olivia's room.

Testosterone Mom said...

Jolyn,
Trust your instinct every step of the way and don't let any title or degree convince you that they know more about your son than you do. SP is going to be great and I can tell you that one hour is not enough to discover all the amazing things about him.

Mrs. Staff Sergeant said...

Jolyn, I'm so sorry you're facing this! Just try to take one step at a time. It sounds like you're doing all the right things, even though it's overwhelming right now.

I cant say I know exactly how you feel (I've not dealt with these issues with my own children) but I can relate to that feeling of the "road running right off the map" when it's all laid out in front of you on paper. When Dillon was diagnosed with cancer I felt that way. The treatment they had mapped out for him seemed as though it would take a million years to be finished, and all I could think was "and this might not work in the end anyway? is that what you're all telling me?". It's sometimes almost too much to look too far into the future.

You're doing a great job! I'll pray that an absolute answer is found for you soon...

~Keri

planetnomad said...

I didn't know the term apraxia and just read the wikipedia article on it. There are a ton of different kinds! I'm assuming you just think he might have the speech one.
Remember that therapy can also come in the fact that he's surrounded by a loving and involved family interacting with him. I'm sure that you are all doing more than you realize to help him succeed.
Hang in there!

RDC Mom said...

Jolyn-

I so appreciate your blog and getting to read a little about you guys! You are right on track and things will certainly fall into place...it's hard WAITING for it all and takes more patience... which God wil give you!
As for the sensory issues, I really had to push that and bring it up here and there...no one ever mentioned it to me. Check out www.otawatertown.com and www.kidspeech.com

These 2 sites have good "checklists" for sensory issues.

Keep pushing! You are the PERFECT mom for Sean-Peter and he needs you NOW to be his voice and advocate. His voice will come!

I can't wait to talk with you more!

Erin

P.S. Does he sign? We found that to be our saving grace before Ryan's words started coming!

Mary Alice said...

It sounds like you have some challenges to overcome. I know you'll be deligent in getting him everything he needs to make progress - that, love and prayers and all will be better.