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Posts by mekat

No, my son's diagnosis is rare.  We don't fit in with the Autism crowd.  We don't fit in with the Down Syndrome crowd.  All the local special needs activities are aimed at the later two groups.  I have gone to the special needs PTA and have been frustrated because it all centers around the IEP and Autism.   If I wanted just IEP info I could go to any number of seminars without joining their PTA group.  Nothing they discuss is relevant to parenting a child with multiple...
You have gotten some good advice.   Most people are in the special education field because they love working with the special needs population.   The staff I worry about most are the aides because the hiring standards aren't as strict.   I trust my son's teacher and I trust that she supervises the classroom aides appropriately.  I participate in PTA and school activities when I can and try to provide as much insight as I can into my son's reactions when he does something...
Has any one mentioned autonomic problems to you?  Sounds to me like she might have some involvement in that area.  Alec doesn't have those issues so I can't really give you great details but  Complex Child magazine  has a whole section on dysautonomia on their site.       Having my son's diagnosis hasn't really helped me as much as I would have liked.  There is just too broad of a developmental range for his syndromes and then having combined syndromes makes it even...
Hypotonic CP isn't really an all encompassing diagnosis so there can be quirks outside of this diagnosis.  If they give her the diagnosis that doesn't mean that will be her primary diagnosis.  My son for example has two primary diagnosis of 7q monosomy & 4q trisomy.  He got hit with two genetic disorders because his is from an unbalanced translocation between the two.  He is definitely hypotonic but it is really a manifestation of his genetic disorders.  Actually as you...
I wouldn't say anything in this situation either.  Also I didn't jump to the conclusion of autism.  I thought of sensory problems first when reading your post.  My son does some of the same things as this kid but his behaviors are sensory partly stemming from his other disabilities and partly post traumatic stress from surviving 1/2 mile wide F4 tornado.   The only thing he doesn't do is line toys up.  With the lining up thing it could be normal or it could be a flag if...
Update & a bit of venting- My son's IEP is still the same old, same old.  I have spent several weeks trying to get him enrolled in a school that could even handle his medical needs never mind his educational needs.  I ran into snag after snag because of school funding cuts trying to get him enrolled.  They have seriously cut back staffing for the summer.  I realize that may not be a priority normally but my county is a national disaster area because of the rampant...
I would recommend following the above recommendations first since they have some decent inexpensive ideas.  If you run out of options or just want to pay a little extra for something that is ready to wear then Adaptions by Adrian would be the route I would go.  Her sewing and customer service is excellent.   http://adaptationsbyadrian.american-data.net/mm5/merchant.mvc?Screen=PROD&Store_Code=ABA&Product_Code=450_TO_492&Category_Code=smar_t   I have never ordered a Smar-t...
We have to redo Alec's IEP because he has to switch schools due to a move.  We are still in the same district and his needs are somewhat mostly the same.  I would like them to work on more academic things though so I may try revamp the IEP instead of it being a routine switch one school name for another thing.  I know from working with him over the summer that he can spell and recognize words and similar sounds.  I would like to see them develop more of his academic...
I gave them a small picture of ds, a bookmark and handwritten Thank You card.  One of ds's therapist wanted to know the URL for his Caring Bridge page.  I didn't really go all out especially since money was tight but I think the important thing is to part with them knowing you appreciated their efforts. 
My son isn't on the spectrum but I have been dealing with a somewhat similar issue.  He has two genetic syndromes, neurological problems severely delayed in all areas of development and and has mostly mild sensory issues, sound sensory issues are more moderate and oral/head sensory issues are severe.  I have had major issues with him kicking and hitting.  He is hypotonic so he very rarely hurts anyone (except when he is wearing AFO's)  but regardless it is unacceptable...
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