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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

lost and trying to not be discouraged

Posted by on Jun. 28, 2013 at 6:32 PM
  • 9 Replies

Hello,

 My son is 4 and throught  the school system I have been told he falls in the spectrum. I am very frustrated because dr's never listened to my concern's. He is high functioning and I am glad but now I am told he doesn't fall enough in the spectrum to receive benefits through the sate of mi educational department. He was tested a year ago because I had concerns with his speech and I was told they would test him in other areas and it never happened. Long story short I found a speech therapist who listen to me and helped get the ball rolling. He is going to get to go to preschool and get OT and be followed by a social worker. I guess I don't understand how they can not give him the other treatment he deserves and needs when two kids can have the same thing and not act the same. I am feeling overwhelmed and disappointed in myself the Dr made me feel like I was being too sensitive, I felt like was going nuts and here I was right the whole time. I don't know what to do with this, I feel like I have been given an answer then told sorry nothing we can do for you. How do I handle the school? I am worried about my son, I just want the best for him. I'm sorry about ranting but no one in my social group understands what I am talking about. I feel so lost right now, and I know I need to be strong for my son.  Tammy

by on Jun. 28, 2013 at 6:32 PM
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Replies (1-9):
emarin77
by Silver Member on Jun. 28, 2013 at 7:03 PM

What about getting services privetly or even moving to another state.  Children with Autism do best being diagnosed by a child psychologist in my experience.  My son is also high functioning, mild Autism and we live in Florida.  He has received all the services he needs without a complaint in the school system.

mypbandj
by Jen on Jun. 28, 2013 at 7:20 PM
Can you go to another dr?
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KatyTylersMom
by Silver Member on Jun. 28, 2013 at 7:53 PM

So first things first - get the school settled and get him into an early-intervention preschool program.  It sounds like the school has identified him as having "autistic-like tendencies" which I believe is their current term for kids with autism (schools cannot diagnose so even if you HAVE a diagnosis they'll always fall back on this label).  You can and should request a full evaluation which should include speech/language evals, academic readiness evals, and behavioral evaluations.  In our area this is done in a 3 week 'diagnostic classroom' where the kids go for 3 hours a day 4 days a week and are pulled out for speech/language testing.  This is done on the school system's dime and you should not be responsible for paying for any of it. 

Now.  To be eligible for services including special education classes and potentially an early-intervention preschool program your child will have to fall into a certain range of developmental delay.  In CA it means falling below the 6th percentile in 2 out of I forget how many areas.  For my daughter it was social skills and communication.  For my son it was social skills, communication, speech/language, and self-help skills.  This is what they are testing/looking for during the evaluations NOT an autism diagnosis but rather how do your child's strengths and weaknesses affect their ability to learn IN SCHOOL.  So if your 4 year old can't communicate with peers on the playground but CAN communicate his wants/needs then he can still qualify under social skills and communication even if his language and IQ etc. tests out as low-normal or above (ie. NOT below the 6th percentile for his age). 

You will want to request this formal evaluation in writing and you will want to CC not only the people you have been talking to at the school district but likely the principal of the early-intervention preschool in your area (google is your friend here) and potentially some higher ups like the superintendant of your district.  You can be brutally polite and to the point but never stray from your goal - getting your child evalutated for a potential placement in a special education class in an early-intervention preschool setting.  I believe they have 60 days (or maybe only 30?  Moms? Correct me?) to respond and either schedule the evaluation or deny your request in writing.  If they deny it then you can appeal the decision but at that point I would suggest using Mr. Google to find a lawyer specializing in special education law in your area. 

Now, after you have things rolling in terms of evaluations through the school you are going to want to pursue a formal diagnosis of an autism spectrum disorder.  Regardless of whether the school gives you everything you could ever wish for in an IEP, eventually he will be at other schools who may not be so forthcoming with services and you may need that piece of paper with a diagnosis written on it to force the schools to give your child what he needs.  So you will need to get in contact with one of the following in your area:  pediatric neurologist, pediatric psychologist, or a developmental pediatrician, who specialize in diagnosing autism (not all do, particularly neurologists may just do epilepsy for example).  So you will need to go through your insurance (this gets pricey) and find a doctor who can diagnose your child.  Then you will likely have to sit on a waitling list for that doctor for 3-6 months.  My recommendation here is to call the first day of every week and sweetly ask if they have any cancellations for the week and remind them (again and again and again) that you would LOVE to take the first open appointment time they have.  Squeaky wheel gets the grease and the earliest possible appointment. 

Everyone does evaluations differently so depending on who you go to see your child may get a variety of tests done but I would expect to have several 2 hour follow up appointments for further testing especially if your child is high functioning.  For my daughter who was diagnosed by a pediatric psychologist she was given IQ tests, the ADOS test, and portions of two other tests I forget the names of in addition to the in-depth autism parent quetionnaire and rating scale which must be administered by a professional.  At the end of all this you should wind up with a very detailed report of your child's strengths, weaknesses, developmental levels in different areas (language, social skills, behaviors, etc.) that you can take to the school as further proof of accomodations you feel your child needs to succeed. 

Finally just be aware that the school is not against you they are simply not FOR you.  They want your child to succeed but they also want to save the spots in their early-intervention preschools for kids that really need that help.  That may very well be your child but YOU will have to prove it to them or at least make them take your child in for the full formal evaluation period so that they can see for themselves what he needs.  For my daughter who is very high functioning, very verbal, but very delayed in her social skills and ability to use her language to communicate with peers, we had to get a lawyer to make the school district take us seriously.  We filed a due process suit against the district stating that they had failed to properly evaluate her when requested to do so.  These suits usually wind up being settled in mediation with a judge acting as mediator between you/your lawyer and the school district/their lawyer.  It was well worth the money for us as now our daughter has a great preschool placement and when our son turned 3 he was instantly evaluated and placed in an excellent program with no hassle. 

darbyakeep45
by Darby on Jun. 28, 2013 at 8:38 PM

Welcome and hugs mama!

N.Carter2001
by Bronze Member on Jun. 28, 2013 at 9:14 PM

My son is 5 years old. At 1 point he stopped talking. Got him speech therapy. She said no more when we found out he has autism. Had to take him out of town to get speech after long waiting list. Take him a few times before winter comes.She wanted his preschool to mostly work with him.And get him a speech device at school. He only gets 20minutes of speech 1 day a week. His speech device. The lady only let him learn 1 day and she sent it back. She gave up on him. She would not let me bring it home. So i gave up on people helping him. So when he is not in school. I teach him. And he is doing so much better. When he was 3 no talking, play alone, no eye contact.He wil do a little eye contact. He is talking more. He will name animals in books and when he wants to eat. And last year at preschool he joined in with his friends. And even gave a little girl a hug. I think his baby brother has helped in a lot of ways. Sorry im no advice

Ajisai43
by Bronze Member on Jun. 29, 2013 at 8:04 AM

I haven't got any advice about the school situation, but more wanted to tell you not to be disappointed in yourself.  You are in new and uncharted waters and are doing the best you can with what you have.  You will undoubtedly get all sorts of good ideas from other moms on this site, and it is important also to remember to look out for and take good care of yourself as well! Hang in there and stay strong.  And when you don't feel like you can, come back here and vent or ask for more help.  This is a fantastic support group so don't be shy.  :)

VioletsMomTown
by Robyn on Jun. 29, 2013 at 8:33 AM

Speech therapy is ok, but as a parent we end up doing most of the work ourselves anyway. A lot of kids might only get an hour a week, so its ultimately up to us to keep it up all throughout the week. You can do this yourself, its not magic, its just something you need to learn how to do. My circumstances are not  going to be the same as yours, every child is different, but I can give you the name of a great book to check out. Its called More Than Words by Fern Sussman, and its easy to read and apply to your child. If you have enough money, get a few sessions of private speech therapy and observe what they do, or simply research online, there is a wealth of information out there. I know how you feel, but time is so important to our kids and all this back and forth, evaluation and waiting lists is not getting our kids any better. This is all too common. Sometimes you just need to do it yourself. Our kids will listen to and learn more from us before a stranger anyways, we are our kids best resource.

Violet's Mom



sue_stef
by on Jun. 29, 2013 at 8:50 AM

Has he been diagnosed by a doctor?

the school cannot make a diagnosis they are not medical professionals

4 of my 5 kids have needed speech therapy and other help with specia ed services from the school and I can tell you that as a family we did most of the work

the school cannot do it all for continuity of care the family has to help with therapy

an official diagnosis will open up many more services

I know in WI a child cannot get special ed services unless they are 2 or more grade levels below their peers in functioning OR have a diagnosis that requires special services

for example a hearing impaired child even if working above grade level will have access to special ed services for things like an FM system (a microphone for the teacher that directs her voice to the child)

there are lots of speech therapy games out there that you can impliment at home with your son

best of luck !

terri-553
by Bronze Member on Jun. 29, 2013 at 8:53 AM

Have a second Dr,who knows Austism look into what services he needs,here in Texas our school helped Thomas ;s Mom get allof his services started incudling his SSI-check every month

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