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Medicmom2.0

Special needs help

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I don’t know where else to turn.  DS8 was diagnosed with autism at age 3 or 4.  His current diagnosis, from the psychologist we did expensive days of testing from last summer, was “mild autism and conduct disorder.”  This guy was a quack who used an outdated DSM manual and screwed up the IQ test, but we were trying to get OPWDD qualified(the NY program for people with developmental disabilities that opens the door for Medicaid, community supports and other services) and that’s who the agency used.  DS8 did not qualify as the committee decided he didn’t show enough deficits.

We live rurally.  There are no behaviorists or ABA therapists within 90 miles.  Our insurance will not pay for it anyway, and we are already strapped paying for private OT. Our insurance won’t pay for private OT as DS8 receives it at school and they won’t pay for any services that can be provided by the school.  But our private OT specializes in autism and SPD and I think it’s worth it, but it’s expensive.  There is only one counseling center and they were worthless.

We homeschooled for a while, but found the homeschool situation here has changed so much from when DH and I were homeschooled here.  It’s ALL classical conversations or very similar co-ops, which are not appropriate for DS. Long gone are the park days, field trips, art classes and other more casual gatherings of 25 years ago. We couldn’t gain inroads, and I felt DS was struggling more socially being homeschooled.  He was first in a 6:1:1 and then a 12:1:1 in school when we put him back in and did fantastic until this Thanksgiving when his 12:1:1 teacher left. The teacher that took over is SPED qualified but doesn’t like self contained and doesn’t seem to know much about ASD.  After a year and a half of no problems, DS8 has had multiple suspensions, meltdowns and aggressive actions.  Almost daily.  They called me to pick him up by 9:15 this morning. His new teacher is following the IEP enough that there’s nothing legally that I can do.   I asked the principal if there’s another class we can move him to, and she said no, as they’ve restructured and he’s in the only self contained class for third grade. There’s no longer a  6:1:1 class.  She’s supportive and is going to do some research, but other than fighting for a 1:1 aide and another functional behavior assessment, they don’t have anything to offer.

I am just frustrated.  We are on a very long waiting list at U of Rochester for another full neuropsych testing, and hopefully will be able to access some supports through that.  Moving is not an option.  I am just tired of not being able to gain any supports or help. I’m open to ideas, though both my family advocate and I think we’ve exhausted everything locally available.

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It sounds like it’s a balance of managing his needs while homeschooling for academics and behavior or peer socialization in the school system right now while you wait things out.  I mean, you said it yourself, you’re pretty much stuck?  It does sound very frustrating indeed!

 

Can the team elucidate what is setting him off into meltdown mode and why?  What steps do they have in place to address his behavior issues and goals?  Obviously if he is flipping out to the point of suspension something is not working in the dynamics.

 

What is your worst case scenario if they cannot approve an aide for him one on one?  What are you prepared to do?  Just thinking these through may give you some clarity or a plan in place of the frustration right now, maybe?

 

Goodness I wish I had a magic bullet to fix the issues you’re having, this is incredibly stressful to read and living it must be so much worse.  Nothing but hugs here!

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Have you had a conference with the teacher?

It seems that the key is understanding what was working before and what is not working now. Does he not like the teacher? Is there something specific triggering his responses?

It's good that the principal is willing to listen to you, but the school has a responsibility to provide a FAPE. This is your son's right. They are not educating him if they are sending him home. If the things in his IEP are not sufficient for providing a FAPE, the IEP should be amended (I know, easier said than done. But also true). I would push on these legal points with the principal and the teacher and insist that they find a way to address the issues.

I'm sorry. It stinks.

 

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Do you have an arc near you?  Contact them and ask if they have an advocate who could help you fight for the appropriate education for him ( quite a few arc offer this for free).  

Set up a conference with his teacher and he IEP team.  While they need to get him the appropriate education setting, what are they doing now.  Find out what is setting him off in class so you ( and really the team) can help him in the environment. By setting up this meeting, it adds more documentation on your behalf should you need to take it further. 

Since he is not getting the education he should due to the suspensions, what about homebound placement while they come up with a plan? 

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I'm so sorry; that sounds beyond frustrating. 

Have you read the Wrightslaw book called From Emotions to Advocacy? I've been reviewing it because we've got to start the IEP process again ourselves, and they have a lot of information on getting past roadblocks like you're describing. For example, they talk about making sure your child's teacher has appropriate training to meet your child's needs. You have a legal right to get this information, and a legal right to get an appropriate placement. Clearly what he's getting now is not adequate.

A therapist told me recently that families in our area who have gotten appropriate help for their kids are often the ones who have hired lawyers. I've been highly reluctant to do this in the past, but I'm kind of bracing myself right now because this may be necessary.

Wrightslaw has several other books which might be useful also. You and your advocate may be familiar with these, but if not, they're worth a look. Good luck.

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