Autism

[Jedi_Master]

Hello!  Some of you know that I have a son who has autism.  I started a discussion thread on the 'Scum about 3 years ago to find out if other people had experiences with autism, and to learn from them and help whoever I can.   I would be happy to discuss this with anyone who wants to talk.   The original thread can be found here:  Autism thread on RS

I hope to hear from some of you.  I'll try to check back here from time to time.  Thanks!

JM

[Matt_Fury]

Although my wife and I do not have children yet, this does concern me.  I have a couple of friends with Autistic children.  One has a child with Asberger's Syndrome and the other has one with Asberger's and the other is pretty severe as he does not talk and it's tough for them to have people over to the house.

I worked in special education a long time ago and understand how much a routine is important to Autistic children.  Such a tough thing for parents to go through.

[Tracy]

JM --

I can't imagine what you and your wife go through everyday. It sounds like you guys are doing and wonderful job doing everything you can for him. 

Although my 7 year old son is not autistic, he does have a neurological mood disorder.  When he was 3, we had him evaluated by a Behavioral and Developmental Pediatrician.  Based on the extensive questionnaire we filled out, the Dr. had an initial diagnosis of high functioning autism.  Once he met our son, it was clear to him that was not the case.  Ages 2-5 were extremely rough on all of us.  Now that he is a bit older, he has amazing insight into what's going on and he is able to help us help him.  He is still too young for an official diagnosis, but he has tendencies towards bipolar and OCD.  It doesn't affect his school work -- he has been above grade level all along.  He's almost a savant when it comes to math and figuring things out.  Poor guy just has a hard time.  I had a very difficult delivery and he may have sustained some injury then.  I feel very guilty about that.  Some days are easier than others - some days we have to take it one hour at a time. 

[Jedi_Master]

Tracy,  Let me know if you've read my thread at RS.  You may not find anything helpful, but we do have 3 different regular posters who are all trying slightly different approaches with their kids. 

I've learned some very positive and encouraging things along the way, as I'm sure you have.  The best so far is from our DAN doctor.  He has seen positive changes in people as old as 25, and does not believe in a "window."  This opinion is also shared by one of the leading psychologists treating Autism, Dr. Stanley Greenspan.   He says the only way to judge how far a kid can go is to see if they keep improving.  If they plateau, then it's time to change something in your approach.   As long as improvement is happening, the sky is truly the limit. 

I'll look forward to hearing more from you. 

JM

[Jedi_Master]

Matt, I didn't know you were a spec. ed teacher.  I have great respect for that profession, and for teaching in general.  While I've had my struggles with schools and the differences in their philosophy and that of our many different private therapists,  I do know that the teachers care deeply about their kids, and want the best for them.    I may have some questions for you later.   Thanks for posting!

JM

[Jedi_Master]

Hey, is anybody still interested on talking about Autism?  Or are you all looking at my thread on the other forum?  Let me know.    JM

[Keonobi]

Hey, new to posting in this section on JD because I'm new to this topic.  Let give you guys a little background.  I have two boys (16 months and just over 3).  When my older son, Jack, was around 1-1.5 he said a couple words phrases (mmmaa, ta-ta, etc.) which eventually dropped off.  We partly chalked that up to him fairly contantly having a pacifier in until he was over two.  We brought up with our pediatrician before he was 2 that he wasn't talking a lot, the pediatrician said to give it time.  Around age 2.5 we again brought it up with him and he said we should still give it time, but if we wanted we could have him evaluated for speech therapy.  Now he's getting speech 4 days a week, plus OT another day each week.  They initially thought it was just a sensory integration issue, but we finally got in to see the developmental Pediatrician that everyone locally recommends and he said it is Autism (didn't qualify that as mild, severe, autism spectrum or anything though, so I'm not sure of the exact diagnosis).  That raises concerns about my younger son, due to the tendency for it to run in families...  Looks like we're going to have to be more aggressive with the therapy and we're trying to get him into a special ed pre-school (as soon as school starts so they are all full; of course...).

[Tracy]

Sorry to hear that about your son.  But I am glad that you stayed on it and got early intervention and therapy.  It may be that it is too early and that your son is too young for then to diagnose the degree of his Autism.  I hope that therapy continues to help him and that your younger child remains unaffected.  

My 12 year old nephew was recently diagnosed with Aspergers - which is on the high-functioning end of the Autism spectrum.  But, my ex-sister-in-law was not the least bit diligent about his symptoms, despite our observations over the years, and comments teachers made.  I mourn for the years of intervention he lost out on.

[Keonobi]

Thanks Tracy.  That was one of the questions my Wife and I have asked ourselves over and over, could we have picked up on something earlier or done more, and when I really think about, I'm not sure we could have.  Sure we had the speech delay, with a small amount of regression, but that was easily tied in with the pacifier, so it wasn't as obvious.  He didn't display any of the other traits, atleast the ones I was thinking to lookout for.  (Complete lack of eye contact, aversion to touch sensations, organization of objects by size, etc.)  A further bit of good news, I found out today that if my older son is approved for a special ed preschool program (which the doctor recommended and hopefully the school district won't be resistant to, otherwise I'm going to fight them on it) it should be essentially free to us (which is particularly good since they were recommending it for my younger son as well).  So the stress level remains high, but progress is being made.  I'll keep you guys updated.

John

[Chris M]

John, I hope all works out well.

I can't comment on having a child with autism, but can merely offer advice and observations of having taught autistic kids in my classes.  This is the first year that I haven't had someone diagnosed with autism in any class.

[JES]

What forms of Autism are your children being diagnosed with? I ask because there are many various forms. Our oldest son (now 18) suffers from Aspbergers. I can share a lot of what I know and have been through.

[Keonobi]

Update time.  So tuesday was my son's first day of preschool and today completes his first week.  He goes for 2.5 hours a day and I think there are about 10 other kids in his class (its an integrated program, so there are kids with autism and/or speech issues and kids without those challenges).  I've driven him each day and then he's riden the bus home; a five minute ride.  The first day he was excited because he and Daddy were going someplace, but not necessarily where we were headed.  He seemed a bit anxious once we got in the classroom, but didn't have an issue until I ducked out as soon as I could.  I later found out he was upset for about 10 minutes and then was great the rest of the day until he had to get on the bus.  He screamed.  Which since he'd come there with Daddy and Daddy doesn't drive a big yellow bus, is understandable.  But then he promptly fell asleep.
Wednesday and Thursday both went great, he was a little upset when I had to leave the classroom, but when it was time to get on the bus was very excited and really seems to like his new routine.  Today, once we got to the classroom, I asked for a kiss goodbye and he said, "ok, bye-bye", and then turned and started playing.  No fussing!  So he's adapting great.

We were concerned because in the past he's shown separation anxieties, so for him to adapt to school this quickly is beyond our best expectations (we were realistically thinking it would be in the weeks...).  The coming weeks will tell, but it seems like he's settling in well.  Add to that he's definitely picking up things at school, so we're very excited.

My younger son, who the doctor confirmed has autism, has been getting speech and OT, and special ed is starting soon.  He's already started to demonstrate improved eye contact and greater interaction.

Of course some of that's being put on hold this week as his speech teacher has the H1N1, but that's an understandable delay.

So things are progressing and its nice to have movement in the direction we'd like.

[Tracy]

I am glad to hear that your son seems to be adapting well to preschool.  It can be a difficult transition for any child - even more so when you add in the anxieties that go with a developmental disorder.  It sounds like he is getting some good intervention.

I am sorry to hear about your younger son's diagnosis.  But your diligence with both of your boys will definitely serve them well throughout their lives.  Keep up the great work!  Here is something that might help you and your wife a bit.  Whenever we are having a bad day, one of us will look at the other and smile and say "Welcome to Holland!"

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[Jedi_Master]

Keonobi,  I'm sorry I haven't checked this thread in a while.  I check the one at RS much more often.  You really should look there and read all the posts.  I've gone through quite a progression since I started where you are now, about 5 years ago.    If I could force myself (5 years ago) to do certain things differently, they would be 1. Don't give any vaccines to your child containing Thimerosol (it's still in most flu shots and in some over the counter meds, and possibly some other vaccines),  2.  If you haven't already given the Hepatitis B vaccine or the MMR, DON'T do it until you've read the following books:  "Changing the Course of Autism" by Dr. Bryan Jepson MD,  and "What Your Doctor May Not Tell You about Children's Vaccinations" by Dr. Stephanie Cave, MD, FAAFP. 

If you read my earliest posts in that thread, you'll see that I once thought the vaccine controversy and the biomed people were a bunch of crackpots.  I've since learned that there is serious science behind this, and you would be well advised to seek out as much information as you can.  You will find many parents, teachers and doctors who will discourage this, and will tell you it's a bunch of hysterics stirring up trouble.   If you can find a chapter of TACA http://www.talkaboutcuringautism.org/index.htm nearby, I would STRONGLY recommend that you contact them and ask for a mentor.  They will assign an experienced parent to you, and you'll get a "Journey Guide" for free, which will give you a WEALTH of info regarding what to do for your child.   

It's GREAT that you've got so much therapy so soon.  Licensed ST's and OT's are FANTASTIC and will help your son tremendously.  Just be prepared for at least one year before you see lots of results.  It could take longer, like for us.  But now our son can say almost anything.   Of course understanding it is another thing! 

I can also recommend some films for you to watch.  Including "Beautiful Son" http://www.beautifulson.com
I would be happy to talk to you anytime offline about your situation and can tell you a lot of stories about the journey we've been on.  I can tell you that my son is MUCH better now than 5 years ago, and although he still has a long way to go, the progress he has made puts him well ahead of most people with Autism, and gives him a shot at a relatively normal future someday.  I salute you for sharing with us, and working to help your son.  You will hear the phrases "You are your child's best advocate" and also "Early Intervention is critical" from everyone.  I can help you understand what they really mean.   PM me and I'll be glad to contact you.  The best of luck to you and your family.  God Bless, and Happy Thanksgiving! 

[Jedi_Master]

Hello everyone.  I again apologize for not keeping up with this thread.  I have been on a hiatus from Star Wars for several years.  I sold most of my collection, mostly since my son doesn't like most star wars toys, and because I had so much stuff sitting in packages and never getting played with.  I used some of the money to help buy parts to build a new computer, and got my son to help with putting in RAM chips and a CDROM drive.   

Anyway, the Autism thread at Rebelscum is closed down.  I don't know when that happened.   So I checked a link to this thread I had saved, and it is still here.  So here I will post - assuming I have a meaningful update.  So much has happened since 2009, that I will have to go through my writings on it, and post some of that here so you can compare experiences.   It has been a rough 10 years for us but also one filled with great joy.  My son still has Autism, but we have found many things he enjoyed, and have had him in many activities.  We also pulled him out of public school and became a homeschool family.   We never had another child, so he is our only one.  I am starting to think about having him declared incompetent legally in the next year or so before he turns 18.  I also am starting to think about retirement and what to do once I don't have to live in Chicago.   Planning for a place we can live cheaply and near relatives who might look in on him once we're gone.  If anyone has ideas on that, or on new treatment protocols, I would be all ears.   I haven't heard anything about new treatments in about 10 years.   Hope someone will post.   Thanks!