Tuesday, July 12, 2011

Well, It Didn't Suck

Pardon the expression. Sometimes that's about the best you can say about something. Dean's IFSP meeting was today. The county is going to offer PT once a week and an educator to come once a week as well. This is not horrible at all, but I was hoping for more. We really feel that twice a week would be best since gross motor is Dean's weakest link and will also lead to improvements in speech, etc. as he gets stronger. Speech is also a concern, especially since as of late, a lot of Dean's words have faded into a general "eh." Fantastic. :(

But they go by the home education model of the therapist teaching the parents how to work with the child throughout the rest of the week. So NEEDING a therapist more than weekly is really not "supposed to" happen. Whatever. I don't care if I sit there and copy one of the therapists exactly, because at the end of the day, I still didn't go to PT/OT/speech school.

The educator will work on speech through the different activities they're doing, as well as build Dean's attention span for adult-led activities. His attention span is marvelous when it involves activities *he* chooses, but he's becoming less tolerant of others leading the way. Silly 2-year-old. :) The idea is that after a few months of this, they'll transition to straight speech therapy again. Sounds good to me. We're doing so much out of the house lately that I'm worried about *too* much therapy for Dean in every area. That said, I'll be looking forward to straight speech therapy again.

So now we have to figure out if we stick with Early Intervention or try to go through an outpatient setting and see if they'll do more than once a week (and if insurance will pay for it). EI will do a trial period of 2x weekly for two months, but then we have to scale back.

In these situations, it's still hard not to get panicky sometimes, not to feel like we're so behind the ball and just missing, missing, missing out on time that is Dean's one and only life. I feel this way about all of my kids to some extent, but I feel it most acutely with Dean. He needs such direct instruction that already takes so much time, that to lose time on top of that feels a bit stifling. Please pray for wisdom for what to do with this situation. I feel a little sick thinking about it, especially when I think about how we will always have to fight for him. Luckily, he is just so darn lovable that it feels impossible NOT to fight.


Cinra said...

Oh Ali I wish there was something I could say or do to ease the feeling we all sometimes get of just plain helplessness when it comes to our PWS children. I had to fight for every single thing Klint ever received. We didn't know what he had was PWS until he was 10. He required lots of speech therapy. I was blessed to live in a small town where everybody knows everybody. Our speech therapist had a private practice there in the same office of her husband's CPA firm (of 1 at that time!!). We knew each other in high school even though she lived in the next small town. She went to school with my cousin and my boyfriend. Anyway to make a long story short, Klint had speech with her for THREE years where our insurance fought back about paying. She never let us pay one dime except our portion of what the insurance shouldn't cover. We owed her $5000 and even after he stopped seeing her, we kept fighting the insurance to get her payment. Her brother was his ENT. He provided information; his pediatrician provided information and of course she provided tons of information. TWO years later the insurance company paid her in full. It seems as though we spend our entire lives doing this but it is SO WORTH IT.

Hang in there because while raising all of your children is rewarding to say the least, it is such a feeling of accomplishment when your PWS child is "grown" and you know you made a difference in everything they've learned. Klint still amazes me sometimes at the things he says or does that make me know "We did it!!"

God is so good and our children are the greatest blessing we could have.

I love reading your posts. I wish I had done this or even had the option of doing this when Klint was young....Internet what's that back then...remember is almost 28!! Oh the stories I can tell!!!!

You are a fantastic Mom. You are an inspiration to so many.


Katie said...

Ali, What a blessed comment from Cinra. I would pray you have many Cinras that support you in your raising all your children. She has said what I could not even begin to put together. What an encouragement she is and to know she has the satisfaction of knowing she did HER BEST for her son. May you one day feel the same. As she said, "You are doing a fantastic job with all your boys.

Gelliott said...

Horse poo. If you want him to have more, DEMAND more. I will say that we do what is called "early access" here in our home and private therapy. A teacher has come to our house since Penny was 10 mths and when she turned 18 months we increased it to 2 times a month. We also have Speech come to our house 2 times a month. THEN, we have private speech 2 times a month on opposite weeks. I used to worry about "too much" therapy, but I really don't anymore. Penny LOVES it! She just sees them as play dates! LOL And heck, who wouldn't want to play? :)

Gelliott said...

Clarification: you are not "horse poo," they are "horse poo." :)

Ali Foley Shenk said...

Thanks, Cindy! Your encouragement means a lot.

Janet Gulley said...

Hey, take the trial of 2x's per week for 2 months and let the therapists and Dean really get to know each other. Then the once a week will be more effective.