What should I ask for/expect from school? Long

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velmom
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22 Jul 2010, 3:07 pm

My eight year old son is newly diagnosed with high-functioning autism. We have been at the same public school since Kindergarten. He has had an IEP for a non-specific learning disability since first grade with speech therapy once a week and about 3 half hour sessions of extra assistance from the special ed director a week.
The special ed director has been extremely dismissive of me every time have brought up the possibility of an autism spectrum disorder. This summer we decided to have him privately evaluated by a psychologist who works extensively with children and adults on the spectrum. After interviewing my son, and myself, and reviewing all of the testing that we have previously had done, privately, and with the school system, she was astounded that the school had not immediately requested that the autism team be called in for further evaluation.

The psychologist believes that it was so evident from the huge range of the Weschler test scores and the atypicality rating from the classroom teacher that autism should have been suspected immediately. I blame myself that I did not follow up on my feelings about this, and to know enough to push to get a diagnosis earlier, and get more services in place.

I have already notified our school principal (who is back to school earliest) about my son's diagnosis, and expressed a wish to meet with her as soon as possible in order to at least have some provisional services in place when school begins.

I have so many questions about what to expect from the school. What would be the ideal services to ask for? How much difficulty can I expect to encounter, especially from this special ed director who has been very condescending and dismissive to me ( I suspect about trying to avoid these additional services)?

The psychologist has said that the autism team should be called in immediately, we should request a full time aide who is trained in working specifically with children who have autism, request peer support, additional speech therapy and request occupational therapy. Are these requests reasonable? Can I expect to receive them? For a number of reasons, I really want to keep him in this school.
The main concerns with my son are significant executive function type problems, speech issues, some minor sensory issues and social issues. He does not have meltdowns and he is well behaved . He tends to zone out frequently and was bullied terribly last year by a small group of boys, mostly for his social awkwardness, and he became depressed and anxious about this. He is performing academically well below his abilities, his IQ is on the high side. This is a fabulous kid, I really want to give him all the help that I can.

I love this forum. It has been so helpful to me as I begin this journey, most of all, your positive points of view.
Thanks in advance for any advice or perspectives.



DenvrDave
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22 Jul 2010, 3:22 pm

My experience is that there are some excellent resources for people on the spectrum and their parents in Colorado, such as:

http://www.thearcofco.org/

http://www.autismcolorado.org/

http://www.consultantsforchildren.com/

The school systems are underbudgeted, under-staffed, and crowded, but there are some very caring teachers and administrators in the system and if you can find one, treat them like gold. We had hit-or-miss luck with the aides, one year we had a great aide, the next year the aide was in tears and quit the profession altogether. If you can get an ARC advocate (see website above), they are very good about knowing what services are available and helping develop accomodations. The "accomodations" section in the IEP is key, that is where we focus. Good luck!



DW_a_mom
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23 Jul 2010, 8:22 pm

Here are some of the things my son had in his IEP in elementary school:

1) Speech therapy (pragmatic speech)
2) Resource center pull outs (to work on specific weak areas like spelling and writing)
3) Occupational therapy (gross and minor motor skills)
4) Counseling (to deal with the issues that naturally arise from being the "different" kid at school
5) Lunch bunch (a group that met weekly with a specialist at lunch time and played board games, etc., all to practice social skills)
6) An escape clause (the right to leave the classroom without notice and go to a designated location when feeling stressed or overwhelmed)
7) Reduced homework, as determined by mom and dad (if he had the skills down but was getting stressed by the volume, we could cut it down or come up with alternate homework; we didn't want this to just be a given, because most days we felt he could do what was expected of him, but we wanted the ability to make that choice no questions asked)
8 ) Reduced writing response requirements (he has a severe co-morbid in his hands, making writing difficult)
9) The ability to dictate or record assignments as necessary (due to the co-morbid, as noted above)
10) Seating preferences to keep his squirming, etc., from being disruptive to the class - plus permission to squirm
11) Unlimited time on testing
12) The choice to take tests in another location

One thing that was really helpful in the early years was talking to the teacher after class about any incidents that happened during the day, so that I would have her side as I tried to break the interactions down with my son later. He's always had a horrible time correctly attributing his actions to the problem; I still remember one time the teacher had him pull a card for being mean to his friend, and he thought he had gotten in trouble for saying the right answer. Lol, it was soooo much more complicated than that, and I spent a lot of time getting my son to remember EVERY piece of what happened, and not just the one he had focused on. Breaking things down like that taught him a lot, and he now can figure out the problem more often than not.

With the bullying issues, you will want the school to be proactive in teaching and modeling that every child is unique and should be appreciated as they are, and also in helping keep your child out of situations that lead to issues. In middle school, for example, my son's PE locker room was pretty much left unsupervised, so that was when bullying happened, and not just to my child. I insisted they have a clear and effective adult presence.


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velmom
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23 Jul 2010, 9:31 pm

Thank you both so much for sharing your resources and your take on school accommodations. Do many of your kids have an aide (specifically trained in working with children on the spectrum) either full time or part time in elementary school?

If so, do your kids feel okay about having the aide? I don't think that my son would really mind. He's had some pull-out and a little classroom assistance for a couple of years and is fine with it.

Do you feel that the aide helped to deter the bullying, or did it seem to make your child singled out for more teasing?

My son is very quiet and tends to isolate himself. He tends to fall between the cracks in a large class because he is not "the squeaky wheel", but he definitely needs more assistance and individual attention in the classroom than he is getting.
He needs help in taking some social risks, dealing with some social failures that will inevitably arise. And he needs significant academic help, due to reduced processing speed and some other issues.

I agree that good communication with the classroom teacher is most important, although at times ours have been overwhelmed by large classes and communication was not happening on a regular basis.

Is a full or part time aide the way to go? Is it realistic to ask for?



DW_a_mom
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23 Jul 2010, 10:49 pm

My son did not have an aid, but at various times there have been kids in my children's classes who did have an aid. I guess the aid can be used as a defense on bullying, but it really wasn't ever necessary in my children's school; it seemed that once a child was so obviously special needs as to have an aid, the kids in the class would get very protective of that child. It is a pretty big social break, however, I think; the kids were protective as they would be a younger sibling, but not really peers for developing friendships. These were kids, however, that really weren't pursuing friendships that I could tell. The aids primary duty is to assist with the work, and help the child stay on task. The same two kids I know have had aids for as long as I've known them, so I would assume the parents consider it very helpful. Be mindful that there can be kind of a revolving door with aids; I don't know why; and sometimes aids will be asked to help other kids in the class. My son sometimes got a little axillary help from an aid that was with another student, the one year they were paired in the same class.

But ... you'll get better information from someone who actually utilized the option, of course.


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Kiley
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23 Jul 2010, 11:31 pm

It sounds like there are a lot more options for you than there are where I live. Many children with high functioning autism don't need a full time aid, or even speech therapy. My youngest son got speech therapy but hasn't had any other special services. His diagnosis is unclear and he may or may not have PDD-NOS. My middle son who has Asperger's and ADHD gets no accomodations of any kind, although we are told that he may bring earplugs to school, but we can't get an IEP. My eldest son gets a lot more. He sometimes gets an aid when they can spare one, gets social skills training at lunchtime, and has an autism coordinator who tries to mediate between him and his teachers. She has dozens of students in her care so can't really do all he needs. He's very disruptive or he woudln't get any of this. He's got Asperger's, ADHD, Bi-Polar Disorder and a psychotic disorder. He really needs a full time aid at home and school, but that's not an option. He got his first IEP in sixth grade even though I'd been requesting one since 4th grade and had private testing done.

It sounds like you might have to keep advocating for your child, but that there is a lot available for him.



violetchild
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24 Jul 2010, 2:18 am

You should ask for all the support that your son qualifies for.

My daughter was on a IEP right throu her school years even thou her diagnoses was missed. (im so annoyed about that, i dont know how they missed she had Asperger's). My daughter had to have one to one attention even in lesson breaks.

Get the Autism people involved and do what the person who has diagnosed her has suggested. Your son deserves to get the extra support. The problems will not go away and may get worst as more is expected from him, get the support for him to help make things less stressful.

(i grew up with undiagnosed Asperger's myself).