OT: Can I Vent and Ramble?

[Munchkin'sMommy]

I know your child is past the qualifying age, but have you contacted the Early Childhood Intervention program in your area? Its only up to age three, but they may be able to refer you to other agencies, etc that could help you. My son is in the ECI program and it has been a GODSEND for him and for us as parents. I was also hesitant to place him in a therapy group, but he as really thrived in the group and has made progress. He gets the interaction with other children and speech, PT and OT services at the same time.

I live in Texas as well and where I live the ECI program is administered through my local school district. I was told that when he no longer qualified for services through ECI, he could go to preschool at a local school, then head start, then Kindergarden. The entire program (at least here where I live) is structured to help all the children who are in the program get the services they need without falling through the cracks.

I agree with one thing...you have to be an assertive advocate for your child. I kept telling my son's pedi that I thought he was not developing properly and he blew me off for months. It was only when I got really nasty with him and INSISTED on a second opinion that we were referred to a neuro doctor. It was that dr who diagnosed the develpmental delay and other issues my son was having at the time. My son was 15 months at the time and luckily his problems were caught early enough.

I am sorry to hear about your son and hope that you are able to get him the help he needs.

 

[Val]

I am sorry to hear about your son's diagnosis, but glad you have a diagnosis (does that make sense!?!). Be sure and go over to the disabilities community board- you will get lots of advice and support from those who have been there/done that!

As the parent of a "special needs" kid- my DD10 has progressive mild/moderate bilateral hearing loss from a variety of conditions and wears hearing aids in both ears and has had many, many surgeries...you need to 1) find some support and hugs from other parents who have kids with some special needs and concerns; and 2) become an expert on special education law. To do #1, try the disabilties community board, ask for advice for a good PDD/autism board, and ask your doctor or google online for a local support group. To do #2- try http://www.wrightslaw.com/....the bestest resource for info. Yes, it is too bad we need to become experts- but if we don't speak up for our kids, who will?

Long ago, in my "first" career, I worked as a psychologist/behavior analyst.....and I couldn't believe how much parents had to know and had to fight to manipulate the system....this is one of the main reasons I returned to basic research; as I become "one of those" parents, I became absolutely flabbergasted at the crap school professionals can try and pull- usually the administrators and rarely the direct-care staff. Even my "friends" tried to pull stuff on me- and they KNEW I knew the rules/laws!

Good luck and God Bless- while this may not be the path you imagined, it is the path you are on.....and if you look real close, you might recognize the beauty of this path, to badly paraphrase this essay: http://www.our-kids.org/Archives/Holland.html. Hey, in our case we are learning sign language so we can talk in our 'secret language'. and DD has learned the joy of turning off her hearing aids so she can't hear me call her for chores!

Keep us posted as to how things are working out!

 

[mickeyluvr004]

I also suggest an advocate as my sis in law had to get one but he is also a lawyer and she is so thankful that she has him as the school district was giving her a hard time with some things for her son who is also in a wheel chair, legally blind, can't walk or talk, he does get physical therapy though it is ordered through the pediatrician i beleive. The advocate is usually free and very helpful, check into this and good luck

 

[nilseks]

I'm sorry you are going through this with your son, but he is lucky to have you fighting for him. Unfortunately I didn't have time to read every nuance of every post, but I wanted to agree and say that The Out of Sync Child is a must read for you! Both of my boys have Sensory Integration Disorder, to varying degrees, and reading that book was the biggest "AHA!" I've ever had in my life.

I understand the frustration with the schools. I don't have any good answers, but you're not alone. Just keep fighting. My son really needs speech but he didn't qualify in the evaluation--he scored too high because he knows all his letters, numbers, etc. Makes no sense at all. Yeah, he knows all that, but he still needs speech!!! We have always gone private for OT in the past and I guess we will have to continue with that for speech. Sometimes it feels like the process never ends, and yes it is frustrating, but you have to just keep trudging along for your child. You'll do it!

 

[Ilvolare]

I live in Forth Worth but dont do public school. We home school but my SIL has a son that sounds close to yours. She had luck up at Cooks children Hospital but they stoped going, they just think he is just behind a couple of years in age ( he is 10 but acts maybe around 8) but it is much more then that in lots of areas. They told her the same PDD, Mile Autisum, and ADHA. Keep working and get as much help as you can. The public school only wants to help your son just enough to get money from the state find private help.

 

[holly7347]

My oldest DD has sensory integration disorder. Her first most obvious sign was a huge fear of getting dirty/wet/sticky and refusing to eat any new foods. She is now 5 1/2 and still eats some babyfoods and really doesn't eat any foods that require much chewing like meat. We did nearly 2 years of OT and about 6 months of speech and she is past the fear of getting dirty for the most part. She will finger paint and stuf like that with no problems but still doesn't like dirty foods or people eating foods she doesn't like near her because she is afraid she will get some on her.

She also has problems with volume level. Everything has to be said as loudly as possible. She will be sitting quietly and just suddenly blurt out loud sounds, she is nearly constantly singing/humming/beat boxing or what ever until I just want to scream.

She does also have some of the physical space issues like you mentioned.

I would totally recommend you keep hounding the school system until they provide help. I had DD tested for the public preschool that only accepts children with delays and they did NOT admit her the first time. I waited until the next year she still had all the same problems so I had her tested again and they were telling me no again. I got copies of all the tests and session notes from her therapists and turned them in. Then I got her OT and her regular dr. to write letters stating why they thought she would benefit from the program. But mostly I called and I called and I called. I called everyone at that school district from the child psych who sat in on the testing, to the preschool teacher that did the testing, to the principal and I called each one daily. In the end I think they let DD in so I would quit bugging them. But it worked and she got weekly OT sessions that helped her with some of her other physical issues. It helped quite a bit and took some of the pressure off me to find a baby sitter for her little sister so I could take her to private OT sessions and it saved us tons of money. It didn't help her with food or her noise level issues but then again neither had nearly 2 years of private OT at a great children's hospital. All in all I'm glad I pushed and pushed to get the help from the school rather than accepting their sorry we can't help you answer. Maybe if the teachers/principal at the school aren't helping take your case to the school board.

Good luck

 

[Willow25]

I don't have any advice to offer but I just wanted to say you are a doing a great job for your child. Keep fighting, you are in my thoughts.