My Advice To Parents With Younger Children

[lsautism]

I was talking to a friend today and some things came to mind.  Many people want to know why I fight with the school district and the State.  I have earned quite a reputation as a crazy mom.  There are many people that are happy with the education that their children are getting and wonder why I am not.  Well, let me explain it to you.

I have known that my son has autism since he was three years old.  I lived in a very small town in Illinois and the district felt that he "wasn't right" and put him into school.  They didn't know what the problem was, but they were determined to find out and give the best that they had.

This was a town of 1,200 people.  Their resources were very limited.  I didn't even know that my child had an issue.  I was blind.  Something that would affect my judgment for the next ten years.

These wonderful people put my son into a classroom of six students and two teachers.  They gave him OT and ST.  They worked on his social skills.  They worked on any issue that came up.  Not because they had to.  He didn't even have an IEP yet.  They did it because they saw a child that needed help to be successful in life.  They treated him like a human being that needed guidance and support.  He was not another drain on their budget.  They had practically no budget.  It didn't matter.  HE mattered.

When my son was five we moved back to Kansas City.  This is where my husband and I were raised.  We carefully called and interviewed every school district on both sides of the state line.  We wanted to make sure that Jake would get the best that Kansas City had to offer.

After several phone calls and interviews we chose Lee's Summit.  I went and told the personnel here that the district in Illinois felt that Jake wasn't ready for regular kindergarten.  They felt that he needed 1 on 1 or small group instruction for at least one more year.  It stated it in his IEP.  Lee's Summit assured me that they were a big district that could handle all of his needs and issues and that the best thing for Jake was going to kindergarten.  Once again, I was blind.

Jake went to Prairie View from kindergarten through sixth grade.  He had some amazing teachers there.  They were kind, supportive, and made accommodations that his IEP didn't call for.  We had no issues there.  I truly felt that we had picked the best school district that we could have.  I volunteered in his classroom every week for at least 2-3 hours.  I helped with the school carnival.  I helped with health fair.  I wrote to the Kansas City Star and told them what an amazing job they were doing with my son.  

I didn't know much about autism and I felt like the district was doing all that Jake needed.  Little did I know that when he got into high school my only hope for him would be living in a group home.  That is where we are now.

WHY?  Because the district never addressed his autism.  They didn't address his dysgraphia.  They didn't address his social issues.  They didn't address his written language issues.  Why didn't they?  I didn't demand it.  In seventh grade the only goal he had on his IEP was to be able to write a paragraph.  This is a child with autism, dysgraphia, and a written language deficit.

I thought that you had to believe in the experts and trust them.  That blindness has caused the loss of my son's independence.  If I had educated myself and fought for him, he would have a different future.  His future was stolen and I stood back and let it happen.

I gave the school district a five year old with potential.  They have given back a child that will never leave home.  I let them do this to my child.  My silence and acceptance granted them permission to destroy my son's future.  He could have been an independent tax paying citizen.  Now he will be a burden on tax payers.  Not to worry, Lee's Summit.  You have no group homes here, so he won't burden your city.

Your children still have a chance.  Your children still have a future.  I pray that none of you ever have to read that the district's only goal for your child is to live in a group home and have it apply to your child.  But, if you continue to sit back and do nothing, you will face the same situation that I face today.  I let the State of Missouri and the Lee's Summit School District steal my son's future.  I will live with that until the day that I die because Jake will be living with me until the day I die.  What will happen to him after that, only God knows.  I pray that you never have to go to bed at night and think about that.

[lsautism]

I'm so glad that my post inspired you.  That was my intention.  I know how weary you can grow of the fight, but our children's lives depend on it.  I will continue to fight long after Jake's has finished his education.  I will fight for all of those children that are coming behind him.  

My son gets stomach aches, too.  It is from the anxiety of school.  He misses 30 days a year because some "EXPERT" didn't handle something correctly and he gets physically ill and I have to pick him up.

I put it all in his IEP under parent concerns.  I make them take responsibilty for it instead of blaming Jake.  I even get the threatening letters about my child having too many absences.  I keep that in my files, too.  Because the IEP team has said that Jake doesn't miss very much school.  They can't have it both ways and I keep it all.

Jake doesn't like to go anywhere either.  He won't go to restaurants any more.  He barely will go to the store.  He just wants to be at home all of the time.  I completely understand that.

I'm so glad that you are going to fight again.  Don't let them beat you.  I know how hard it is, but when we give up they win.  And it's our children that LOSE.  

[lsautism]

Thanks for your advice.  I'm going to try that pencil.  Right now he is able to type and he knows how to use spellcheck.  The problem is getting the district on board with his IEP.  It is a constant battle and sometimes they think that it is all ME.

Jake is verbal and very smart.  He has an IQ in the upper part of average.  Somewhere around 110-120.  They can't get an accurate one because he has short term memory issues and pragmatic issues.  He has the interpersonal skills of a 4 year old.

They see a child that weighs 280 pounds and is 6 foot 2 inches and is smart.  The behaviors caused by his autism look like defiance or refusal to them.  In most cases its his inability to understand what they are asking of him.

Example:  They told him that he must type any assignment that is more than 5-8 sentences long.  One day his resource teacher told him to type an assignment that was 3 sentences long.  He told her that the rule was 5-8 sentences long.  She said that he refused to do the work.

I will keep fighting until they do what is right.  I live in Kansas City and their are limited resources for our kids.

Thanks again for all of your wonderful advice.

[MJIthewriter]

Also in my life I'm battling with the threat of group home situations too...  That's one thing I don't want for my future, so I do hope that there can be stuff changed to make independent living and achieving ones dreams possible.

[MJIthewriter]

I haven't read through all the replies yet, but don't give up hope.  One thing on top of the things suggested is to get your son connected with other autistic adults to see he isn't alone.

I found Autism Network International to be very good.  They carry a positive message which is important.  I don't care where people stand on whether or not autism needs to be defeated or cured, a bit of positive autism advocacy goes miles to help the individual.

(I brought that up from memories of discussing something on another forum on another website.)  Still I can't stress enough how much that helps one to feel positive.  It still is a bit of a struggle as far as getting independant living set up, but hopefully there are resources in your area to look for to help your son achieve his dreams. I have issues with handwriting as well. I seemed to get pain when writing, which made note taking difficult besides writing slower to keep legible. It helped to get printed copies of the class notes if there was a lot to take in/write out.

That's why I find it easier to use the computer but even still I may have issues with coordinating my fingers and spelling. If I have to be concerned about spelling, using a spellcheck comes in handy. Maybe that is something that can help your son as well.

If your son must write I found from personal experience I've found mechanical pencils with rounded tips like Pentel's e-Sharp (which I can't find for sale here in stores anymore.) to work pretty well.  I like it because I can comfortably hold it pretty close to the point and write better.  Another neat thing about e-sharp is you can use more lead before it it becomes loose and falls out.

Just while pulling out one from the spiral of my sketchbook, I broke the plastic clip... I wish I could find them.......  But I do know there are others out there with round tips.

[sparky6365]

I just posted on your Delphi post before reading this, and do I ever feel like a fool now for not doing more research before opting for homebound services for my 17 year old son.  you see, the system finally wore me down and took the fight out of me. so at age 10, after involving SEAC, Attorneys ect... following an incident of abuse in the school, I just gave up.  Now he is totally unsocialised.  As a result he is now totally homebound.  I found this site today looking for advice on a stomach ache because he now has such severe panic over leaving the house that going to the docter is out of the question using normal get in the car and go manner.  He is twice my size and strong as an ox.  It now would take an ambulance and 4 to 6 grown men to restrain him to get him to medical attention.  I look back just 7 years ago and think what if?  What if I had continued the fight?  What if I had just changed him to a different school system?  I felt justified in my decision at the time because he had such a fear and distrust of the school after the abuse incident, but was I?  
2 years prior to this incident he tested 65 iq and 2 weeks following the incident when his testing was due again he tested 33.  I have opted out of testing since his homebound status, for which he receives 3 hours per week with a special ed tutor and 1 hour per week OT provided by the school system (offered I am sure to get rid of ME) but you have empowered me again and I am requesting he be tested again ASAP.  I know I cant give him back those de-socialized years and cannot mainstream him again at this point but there has to be more for him out there  and I AM GOING TO FIND IT.
Thank you for this post and rekindeling the lost fight in me!!!
And for all of the other parents who are on the verge of giving up your fight, I can tell you, from experience  DON'T

[Natta1980]

That is true, some schools do not address social skills as they do not feel that they affect his academics....I am so lucky that most of my son's IEP goals are targeting adaptive, social, and communication skills.

Well - if school does not do it - you will have to do it privately, or even by yourself.
How old is your son? Never give up - some children are non-verbal for 10 years, and then they start talking.


Good luck, never give up, and find appropriate interventions for him, focus on social and self-help skills as well as vocational skills

[lsautism]

Thank you.  I do hope that my story helps others.  That was my intention.  I am still fighting my district and will as long as I can.  I ran for school board last year.  I only lost by 2%.  I am running again this year.  I won't have children in the district any longer and I will be free to stand on my platform and demand change for the 250 children in my district that are being left behind.

Sherri

[RickDG]

Thank you for your advice and I hope everyone here heeds it.  My heart goes out to you and I'm sorry you feel the way you do, but the system failed your son, not you.  It's not easy and not everyone has the resources or even the expertise to fight the system.  My wife's full time job for more than a year was managing the services for our twin autistic daughters (one severe, the other middle of the road).

We are the "squeaky wheel" family in our local school district but early on I told my wife that we're not here to make friends with the school, we're here to get our girls the services they need.  We hired an advocate for our very first IEP meeting while other parents were afraid to anger the SPED director.  We dot every i and cross every t in the IEP process and we take nothing for granted.  We had our own multidisciplinary evaluations done where they even went in and observed the preschool for a day.  We may be pains in the butt, but I know the SPED director and the teachers respect us and would be doing the same thing for their kids.  It took us forcing the issue with the school - we hired a lawyer and we had an intake meeting with the best special school in the area and threatened to place our daughter unilaterally and sue the school to have them pay for it.  They saw the writing on the wall and implemented a partnership program with the very school we were planning on sending our daughter to so now they run the preschool, have one to one tutors for all six kids in the program, ect.  The kids (all of them) are responding well to the new program.

Is, it can't have been easy to bare it all like that.  If it's any consolation, I have no doubt that you have helped others by sharing your experience.  

[lsautism]

Thanks to both of you.  I'm not being hard on myself.  I have actually the president and cofounder of an autism support group in my area.  I'm on the special education advisory panel for the state department of education.  I get calls every day from parents that are going through the same things that I am going through.

I wrote this because I want parents to get involved and not make the mistakes that I made.  I want them to make sure that their children live up to their fullest potential.

My son is verbal and has an above average IQ.  He is in regular education and does pretty well.  His issues are social.  They were never addressed and he has the interpersonal skills of a 3 year old.  

Thanks again for your kind words.  

[jaylor]

I read your post and I think you are very hard on  yourself.  I have a 4 year old son who is diagnosed PDD-NOS.  I work very hard with him and believe me I know when his teachers at school see me coming, they are probably saying "OH great her she comes again" but I dont care.  It has been a very lonely rough road, where help is very little and your so called experts or professionals aren't so "expert or professional" at all.  Now there is a lot more known about autism spectrum disorder and there still is alot to learn because the severities and "issues" for each child are different. When your son was younger there wasn't nearly enough known or enough ways to research, now we have internet and there is a world of information.  But don't blame yourself, at the time you did the best you could and I am sure you are still doing the best you can.  It is a learned process for every parent and very long learning process. Through research on the internet and trial and error on my own behalf, I have learned what works for my son and what doesnt, I do alot with him myself.  Most of his progess I believe is because of me, I learned how to help and work with him.  Dont give up, work with him yourself but again dont blame yourself, you dont know what the outcome would have been even if he were to do it all over again today.  

[Sally44]

What kind of a school do you think could have addressed your son's educational needs?
Has your son been introduced to computers and voice recognition programmes etc.
Do you think he has the potential to be living and working independently?

My son also is not reading or writing at all.  
I will be going to an Educational Tribunal about his school placement probably after Christmas.  I have now been told that I will probably lose the tribunal because his current school (which has expertise in autism), can meet his needs.  However no-one can tell me if that will involve him learning to read and write.

I would say, don't give up.  Your child is never too old to learn anything.  I have an older sister who managed to get a job when she was in her thirties and moved into her own flat in her forties.  She is doing okay, however due to local council budget cuts, she will no longer have any carers visit to check up on her.  So, at some point in the future, she too could end up in a group home or back with a family member again.

I know you are very disappointed and angry and rightly so.  But try to remember the future and all the possibilities that that could hold.

But you are absolutely right that every parent has to find out what their child is entitled to and what they are currently receiving.  Every government funded body is going to have their eye on the £/$.