Paging Polly...

[CAMary]

Hello Friend-

My middle kiddo just got the "official DX" of sensory processing disorder (used to be called sensory integration disorder) through a school evaluation....finally - it took me hounding them all year, but now that I got *my* eval from *their* people - we are finally all on the same page! I've suspected it for awhile, but it seems pretty mild, comparatively - fast amusement park rides and food texture are the only real noticeable "sensory" issues...so I never pursued an independent eval ($$!)until there were issues at school...

The OT said it explains his motor skills deficiencies (though it does manifest differently in all kids - that is our biggest school concern (writing/copying) at this point..) They told me to send a copy of the report to my ped to have in his file, but I don't need to follow-up w/the doc, per se, since treatment would be OT, which he will start receiving next week

He will get 45 min/week of 1:1 OT and the therapist will give us (myself and the teacher) 1 hour a month of consult - things to do at home and classroom modifications to help him out.

I know your area of expertise is ped (neuro?)psychiatry, right? Does this all sound right to you? Weird thing is, now we have a "diagnosis" - this is apparently STILL not a qualifying condition for an IEP!! But since he is back in speech (which IS qualifying), speech therapist says we are good for 2 years, since she predicts it will take that long for his "r's" to come around...

I am interested to know if this all sounds "right" to you....you can respond here or PM or email me - doesn't matter

Love,
Mary

[kate_ce1995]

Yahoo for the school to get caught up on what his issues might be! And kudos to you for keeping on top of it. Kids need advocates and it makes me mad when the parents go into denial that their kid has a problem. My future bil has a 3 year old who can't talk (finally getting tubes in his ears next month...probably can't talk because he can't hear!) and a 6 year old who is in kindergarten (missed last year's cut off by 6 days so she is an old kindergatener) who's teacher thinks she has ADD (which other family members have seen for years). But instead of aggresively working on it, he is trying to embarass her into learning to read (because her cousin...Geoff's daughter) is also an old kindergartener and is begining to read. So he says stuff with the whole family there like "well, Erin can read" and "you aren't going to get to 1st grade if you don't learn to read". Poor kid already hates school and she's got 12 more years (at least) to go.

Anyway, I'm rambling. But that is my personal pet peeve for today. With the resources and what we know now, kids should not suffer these issues and be left behind. Geoff was one who slipped through the cracks, and although he copes well, he had much more potential than he has or will ever realize because he didn't get the help he needed because back then, they didn't do as much for kids like him.

I bet your kids are looking forward to summer vacation. I know ours are able to tell they are on the last sprint to summer now (they just went back after April vacation this week).

Katy

[barbaranoela]

Mary----Kait had special ed. while in grade school---
She was very slow in understanding and needed much time to do a test--

Of course we all know it was due to her issues and the increasing seizures that she had in her younger years~~~

Minnisink School district (where Lynn lives) is terrific with children having problems--

At one point the Epilepsy Org. sent over a nurse(equipped with film) to show and Xplain to the kids what Kait was going thru and Xactly what happens---matter of fact to this day STROBE Lights will trigger her off!!

This was Xtremely helpful cus when Kait would seize---instead of the kids running the other way in fright---they would rush to her side and help her before the school nurse got to the classroom--

I hope your guy gets the best that is due him and as Katy said *doesnt slip thru the cracks*
The time comes when U as the mom have to really keep fighting for all the help he needs ---which I know U have--

Good luck to U all, Mary~~~~~

luve Barbara

[celia]

Mary, I'm glad this got figured out so your son can get the help he needs. He's lucky to have you as a mom. Your persistence has paid off.

This is very interesting to me because my niece, who is 17, has been an extremely picky eater since she was a young child. There are lots of foods she won't eat because of the texture, smell --- like bread, cooked vegetables (she will only eat raw) etc. Her parents sometimes feel like pulling their hair out, because Laura doesn't exactly have a balanced diet. I have some similiar problems as does my older brother, but it's with far fewer foods than Laura. I wonder if there is a genetic link in this. I will let my sister know about this and maybe it can help her gain insight to Laura's situation rather than thinking it's just stubborness.

Thanks for sharing your situation. Good luck with this. Celia

[Polly]

Hi back atcha, my friend!

WOW! That is wonderful news!!! You are very lucky to have a school system attuned to this disability and taking it seriously. I don't think that is the norm around the country. And I love the website that you referred Celia to - it is quite good.

My son had some of the symptoms (trouble falling asleep, picky eating - only bland foods - mainly pasta- that could not touch other foods on the plate, very cautious about getting dirty/playing in mud, etc.). However, he also had the inattentive type of ADHD, so his major problem was inability to focus/concentrate.

It's good that the speech problem will qualify him for an IEP for a while. After that, if he doesn't qualify, you can always request a 504 plan. Although a 504 plan doesn't qualify a child for actual special ed. services, it does require the school to make any ACOMMODATIONS that the child needs. This could include extra time for assignments/tests, taking a test orally instead of in writing or in a room by himself if he is distractible, always being allowed to use a calculator, etc. Also, my son was able to get 50% more time to take his SATs because he had a 504 plan - and his score went up 100 points compared to taking it the regular way!

I loved the story about the frosting. My son would have reacted the same way. One of my son's loves is one or two very long, hot showers a day. We are always yelling at him to cut them short because we are on a well and have had some recent drought years. But he loves just sitting in the tub and having the water shower all over his body for AGES - it is the sensory element that he seeks.

Anyway, good work being the squeaky wheel - it definitely paid off for your son! Keep armed with your folder of info about SPD - you will need to educate each new teacher at the beginning of every school year. I am speaking from experience. LOL!

Love,

Polly