Re: Swallow problems??Please Help!!!

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Tamara,

It's mostly a matter of "creative" wording when writing up the IEP. Instead of addressing the increase in PT as a medical matter how about wording it so that the school system can "work within" their parameters. For instance instead of stating that the Doctor wants more PT sessions to combat contractures , you might word it as ROM pt is needed so that student can maintance proper posture during instruction time and/or it's needed for safety issues transferring in/out of the desk/commode. If the range of motion is compromised then seating issues become a HUGE problem during the Learning Process. As far as the speech issues or rather oral motor issues go ... safety factors are within the parameters.

I can remember battling with the schools for PT/OT in the begining when we thought the boys just had CP. I learned alot from STEP (Support and Training for Exceptional Parents) which was provided free of charge when the boys *graduated* from Rainbow (birth to 3 program). You might be able to attend a class in your area. Your local Health Department should be able to get you the information. If you don't have access to it I might be able to get another copy of the manual. It's HUGE... has all the laws/applications mandated by the Federal Government. To be honest the first M-Team meeting after we had the STEP class it seems as soon as I brought out the manual it was smooth sailing from that point onward.Though I gotta admit that our school district staff also were helpfull in "creative wording" when it came to the IEP. But it's sort of like the old question of which came first the chicken or the egg. At any rate I highly recommend STEP.

Another thought that I had when reading your post ...since the Ortho suggested the increase in PT ... wouldn't your insurance cover those visits? Ours did ..but only 8 visits were authorized at a time. The therapist did the evaluations (took 3 visits since the boys' tones change with the weather) and then the other 5 visits were spent more on training my husband and I to carry out the theraphy. We all found that was more helpfull than trying to load up all the kids and driving them 2-3 times a week for 30/60 minute appts. Now if we notice a change or have any questions we ask our primary care doctor to request an evaluation to be done and go from there. The oral motor issues were dealt with thru Bill Wilkersons (a deaf/speech facility in Nashville TN). There we not only learned how to work with Cory on the oral motor issues but also found out about more indepth sign language. He has a core of about 45 signs and the patience of a saint waiting for us to catch up to him in the communication dept (giggles). His hearing is perfect it's just the enuncation/elocution (sp??) issues get in the way. He now is the proud owner of a Vantage communcator (love love love it!!).

When we were going thru the eval for his power wheelchair we really thought that the swallowing issues were leading us to alternative eating (G-tube)so it was decided that a tilt feature would be appropriate but the modified barium swallow study was instrumental in solving that for the most part. It seems that the microcelphy (sp?? small head) coupled with abnormally large tonsils were constricting his throat .. litterally there was less than 3cms of free space. We were drowning the poor fellow since it would take 3 swallows to get one sip of drink down ...heck we just thought he was an uncordinated thirsty kid since he'd guzzle it. Before the T & A surgery was done food/drink would be packed up inside his nasal cavity and lodged in between skin ...when there would be space for it to go down for digestion it might be the same instant that he'd inhale ...which led to alot of upper resp. infections. I'd love to say that the surgery completely took care of it but at least it did make a big difference. The G-tube issue isn't even discussed any more. But the Occupational Theraphist still works with him at meal times 2-3 times a month. His PA is there at school to make sure the *plate* is prepared. Here at home I just automatically cut food while preparing it. ROFL My husband doesn't mind too much unless we go out to dinner, that's when he realizes why it takes 30 minutes for me to finish fixing dinner and why there are an awful lot of cassaroles on our menus.

Let me know if you want me to pull out all those old IEP's the boys had (they are now 14 and 11) from the begining ... I could share with you how we phrased the goals in order to have the lions share of theraphy done thru the public school district. The boys are now enrolled at the School for the Blind. Both are legally blind yet see well enough to play video games and use power chairs. Their main vision issues are due to "muscle" stuff such as nystagmus, and delayed pupil reactions. Cory appears to see great at a distance (can nail ya using his toy bow/arrow from 8 feet away yet gets cross eyes at 3 ft), and Zach sees things in "chunks" and unless it's vivid/contrasting in color his 3-D issues show up... if my sister and I are standing close he can't tell us apart untill we speak. In photos of our family he usually clues in on the guys (Uncles) and matches them to the gals (Aunts) since my three sisters and I are so close in apparence most of the time. All that to say that once we left the "public school" arena the need for creative wording wasn't needed. It was quite a shock the first year there when the Principal would contact us to ask if it was ok if Zach had 3 sessions instead of 1 a week or if it was ok with us if they purchased a reverse FMsystem for Cory. There also is another difference in that the school for the blind is approaching school as preparing the kids for their future ...not just education on ABC and 123's. Life skills appear to be just as important to them as SAT scores.

I think I've hit my quota of typos for one night .... I'm so used to lurking that actually typing is a chore.. hope the reading of all this isn't too tedious!

Take care and best wishes

Romona

mom to Tori (age 15), Zach (age 14, multichallenged eyes to toes and proud owner of a MoLift system one week old!! Yeah no more lifting the kids in and out of the bed/tub), Cory (age 11, multichallened eyes to toes, proud owner of a stair chair as of 1 month ago!!! ; Complex 1 defect, and possiably OXPHOS, FOD defects) and wife to Tony (my hero!)

The Ortho dr. wanted us to have two extra P.T. a week, to keep it from getting worse. The school said no, we needed it for medicial reasons, not education. So I know they will say no on the extra Speech!!!!Do we fight?????? What are our rights?????