mrwebb
Regular
Posts: 11
Joined: Feb 2015
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New to the group; Stretched to the limit
Hi. So glad to find this forum and very helpful that there's even a suggested introduction. In brief, I have a son who likely has sensory issues (as noticed by us, teachers, behaviorists, social worker - hasn't had an OT eval yet). We love our 5 yr old son, but he's tearing us to pieces, and I'm afraid of the whole realm of treatment because of the cost
1. What brings you here?
Kinda got into it already. My son was delayed potty training, likes to shriek, bang, twirl, spin (both himself and objects). Eats maybe 4-5 food items regularly and and every meal is a struggle. Always compulsively grabbing at things - in stores, in school, at the playground (although that has improved), needs to touch us and others all the time. Falls out of his chair; crashes into things; doesn't sit so much as writhes halfway in and out of chairs, sofas. Still has to co sleep with my wife, or if she wakes up, he does too and has to find a warm body.
3. Share a little of your journey if you'd like.
Some days I just want to collapse. My wife is coping with an illness and my son exhausts her. Domestic hell ensues. My workdays get cut short because I'm always leaving early to go help at home. Almost lost my job last year. All we do is work/childcare/work/childcare. My son just won't stop. Like he's driven by a motor that won't turn off. After getting behavior counseling and a special social skills playgroup as well as neuro-developmental pediatrician's evaluation, we fell short of the criteria for an IEP because they say he's performing at his grade level. I feel we were sold a bill of goods when we were told we could get a 504. Apparently we can't get OT services in school.
Bright spots: my son was doing ok in kindergarten but since the holidays, it's like he was 3 again. Potty accidents, running around the room flapping his hands and singing a manic song to himself.
We're so scared of the therapy because it costs a fortune and we just don't have it. The only message we get from OT's is "we don't take insurance." I'm angry because neurologists taken insurance; why can't they? We devoted ourselves to trying to be with our 2 kids (we have one younger) in their early childhood but my wife and I have to work to catch up from the stay at home period. My son's school is great in that they've worked with him a lot and the teacher has said she has a soft spot for him and thinks he's brilliant.
4. Is there any immediate help you need?
I don't see any light at the end of the tunnel and my son just started getting worse after a first half of kindergarten that went well. I'm lucky if I change pants two times a week or remember to brush my teeth.
5. SPD doesn't run your life! What are you or your child's gifts? Interests?
SPD does run my life, my wife's life, my younger daughter's life. I almost want to cry when writing about it. As awful as it sounds, I'm almost jealous of parents kids with a more severe diagnosis because at least you get benefits for it. How messed up is that?
My son is so wonderfully curious, talented in art, construction, math, languages. But it's like he's vibrating himself off of his own axis 80% of the time.
6. What do you like to do in your spare time? Any hobbies or interests?
I had hobbies. So did my wife. we don't anymore.
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02-02-2015, 01:50 PM |
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