About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Sunday, March 29, 2015

thoughts on schooling with multiple children with special needs

It is IEP time again, and no matter how much I gear myself up for this time each year, there are always new surprises and new stresses.  here are the things that I am working on currently for each child.....what shocks me is how many times what I am working on for one child is in direct contrast to what I need to fight for when trying to help another one of my boys.....if that's not enough to make your head spin, well, you are a better person than I am.

Matthew:
1.  Recently was in the room while a child was restrained.  This is against the regulations for restraining a child, which state it must be done away from other children.  The child was restrained in front of the classroom door, so no other kids could leave.  I was not told of the restraint by anyone but Matthew.  Given this, and so many other issues this year, the Director of Special Education, an advocate for Matthew, and a psychologist hired by the school district all went for visits last week.  Each went at different times.  Each saw a quiet, well run school environment.  The only issue that was raised was that Matthew is physically locked INTO his classroom.

One change that occurred in response to my upset about not hearing of the restraint happening in front of Matthew, is that I now get a daily email....in last week's emails alone I was told of:
1. 3 classroom crisis which involved support crisis workers being called in.  These were crisis of other children, but the  chaos affects matthew.
2.  1 child going AWOL- leaving the classroom without permission
3.  1 outburst from Matthew.

How 3 professionals went for a visit and all was calm, I wish I knew, when these things occurred in the same week of their visits.  While i trust that they saw the school, and appreciate that the classroom Matthew is in, is a decent classroom, I am always going to be sad that he deals with these chaotic experiences, and i will never know the impact they have on him.

That said, the increased communication is helping and having advocates who support that the communication is a MUST feels like  a giant step in the right direction.

2.  I really want Matthew in a typical school environment.  That said, I understand he is simply not ready for it, and the typical school is likely not ready for him, so it will not necessarily make sense.  However, I was told by the Director of Special Education that the single best environment for students is in district programming, when we talked about David, and I can't get this statement out of my head just because I am dealing with Matthew.
She was clear when she said that the best programming is in district, that this did not mean Bethlehem specifically, but that in district in most school districts is far superior to out of district programming.

3.  I really feel like Matthew is a child who would thrive with the extracurricular programs that school districts offer children.
* He would thrive in band
* he would excel in a sports program- even a freshman team or modified would be awesome
* home economics, shop, etc....would all be awesome for him
* If he can't have access to these mainstream programs, how about pet therapy? music therapy?  art therapy?

David:
1.  It is being recommended that David stay in 5th grade next year.  I like this because it gives him another year in this amazing environment.  However, in talking with the psychologist mentioned above in regards to Matthew repeating 8th grade, I was told that retention is never a good idea for children with special needs.
I am 1 mom, parenting 3 children with special needs. How is it that these rules are black and white and yet I cannot apply them to my 3 children?

2.  David is connected with the current mainstream 5th graders at his Elementary school, they really look out for him.  These kids will go on to 6th grade in the Fall.  How will David do without them.  Not that they are peers to him, but rather they are kids who treat him with such love and kindness and caring, and it is a nice group of boys......what if he doesn't get that type of group next year?
3.  The Psychologist and other parents of middle schoolers have been saying that our mainstream programs are not ready for children with special needs, that there is often inappropriate responses to
"discipline" issues, and especially for David where his "behavior" is so closely connected to his seizures, it is a challenge to trust that by holding him in 5th grade, that the middle school will really be ready for him next year.  Can't I just keep him in this class until he is 21?
4.  Yes, I know that in item 2 I started off asking if he should stay in 5th grade again, and now I am saying he should stay there until he is 21......do you see why I am so confused???????

Jacob:
1.  Jacob is in a cotaught class this year- and has really needed the support but thrives with the support.  Given that he thrives with this support, he is on the cusp of losing the support....I hate that a child has to fail to get help that they need.
2.  Jacob doesnt love leaving the classroom, so it is being recommended that he have fewer outside of class services...again, while he may not love it, in 3rd grade he can still leave class and it is not as big a crisis as missing class time in the higher grades, so if he needs OT and Speech...in my world better now than later.
3.  Jacob is getting speech 4 times a week next year, but is not being referred for summer speech....that seems assanine to me....the child struggles to say many multiple syllable words clearly, which is super cute, but not when he is 20......10 weeks without speech over the summer seems like asking for trouble....do I really have to be the parent that fights for this?  Can't the speech therapist see why this is a problem?  So for now, i am keeping a log of all of the words he can't say, because THAT has made for a fun weekend!

Really, the speech therapist can't keep a log?  She is working on "drilling him".  In 1 word situations, he can say most things, however most of us speak in more than 1 word utterances.....maybe the SPEECH therapist could have a conversation with him and gather data?  I gave her the example that he calls it a "mote control" instead of a "remote control" because that isn't a "school word" she says she wouldn't have known that.  Ummmmmm talk to him for a few minutes......this is not the only word he leaves off the first syllable of......cute? yes.,.,,,,,,functional? Maybe not so much!

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