Hey all, I’m going to set up this blog post I got off of the dailykos political blog. I know this is a tough political climate so to avoid losing half of my subscribers I want to say that this post absent of its politcal opinions calls attention to the struggle that moms have with seeking therapies for their children. I hope it is received in this way and not as an endorsement or dissaproval of another candidate.

Written by Revelwoodie

It’s hard for me to choose what to include here.  I could certainly write a book about the odyssey of pain that is the life of my family.  I do need, at the least, to give you the bare bones background.

My husband and I married in 2002, and welcomed our beautiful son into the world in 2004.  We knew we wanted two children, and started trying again right away.  And boy, did it work!  My little angel, Audrey, was born the next year in 2005.  

By the time we knew something was wrong with my son, I was already 6 months pregnant with my daughter, and there was no turning back.  If we had known then, we would not have had a second child.  I still bless every day that we’ve shared with our lovely daughter.  I guess I’m glad that I don’t have the opportuntiy to take that back.

Fast forward a year or so, and we had two children diagnosed with autism.  Just to be clear, we’re not talking about just “autism spectrum disorder,” which includes conditions like Asperger’s Syndrome which may be milder.  My children are autistic.  Period.

That’s where the pain begins.  The kind of pain that can never really be verbalized to anyone who has not experienced it.  They say the worst thing that can happen to someone is the death of a child, and I don’t doubt it.  Thankfully, only a minority of us know what the second worst thing is — having a child who is sick and will never get better.  They say time heals all wounds.  But having an autistic child is a fresh wound every day.  The pain does not recede.  It only gets worse.  Every day brings new agonies — “If my child was normal, he’d be talking now.”  “If my child was normal, he’s be making his first friends now.”  “If my child was normal, he’d be learning to ride a tricycle now.”  And I’m sure that will continue for the rest of our lives.  All the simple joys of life that most people take for granted are forever beyond our reach.  My children will never go to a prom.  Drive a car.  Get married.  Go to college.

But heck, that’s in the distant future, right?  The heartaches of today are simpler:  My children will never tell me what they want for Christmas.  They’ll never draw me a picture to hang on the fridge.  They’ll never say, “I love you, mommy.”

When first arriving on this nightmare landscape, your expectation is that the cavalry will ride to your rescue.  Armies of public servants will arrive at your door — “We’re here, ma’am.  We’ll help.  Everything that can be done for your child is being done.”  That’s the second heartache — no one comes to your rescue.  You’re on your own.  I saw the end of a movie once — I don’t recall the name; it had Nicole Kidman in it and they were stopping some terrorist from doing something or other.  They flashbacked to the terrorist’s past to explain his crazed behavior.  He was in his foreign homeland, in a warlike scene.  He was carrying the bleeding body of his daughter who’d been shot, begging for help.  No one responded, and she died in his arms.  

That scene is the best example I can think of to explain what it’s like to be the mother of an autistic child.  Sometimes, I just want to run into the street and scream, “My babies are sick — someone, please help us!”  Real life is just like that movie.  No one comes.

There are services.  Each state is federally mandated to provide early intervention services for children with autism.  You see, a growing body of research suggests that with the correct treatment, which is agreed to be 25-40 hours per week of behavioral therapy (ABA), as many as 50% of autistic children can go on to lead normal lives.  50%!  Now there’s a chance for our children — we can save them!  There’s just one problem.  The money isn’t there.  Every year the rates of autism increase, and yet every year the funding is cut.  Suddenly, you realize that the people who you count on for help are now your enemies.  Your child is a great expense to them.  The officials in charge of these programs approach you with one objective:  How little can we give this family?

We were able to get 25 hours per week of early intervention services for my son, and it was a miracle.  He made so much progress.  And when he turned 3 and it became the school district’s responsibility (under IDEA) to provide him with the right school for his needs, we did manage, after some wrangling, to get them to send him to an excellent ABA school.  It’s private, and expensive.  They fought, but my son won.  And his progress continues.  He’s 4 1/2 years old now.  He has some language.  He can use the potty independently.  He’s even learned some skills that enable us to play with him — that’s the best part.  Though he still has very little language, he can count and even has some sight words.  His future is looking brighter.

Ah, but my daughter is a different story.  We could only get 15 hours of early intervention for her.  Though she started out with even more promising signs than my son, she’s not making the kind of progress he’s making.  The hours just aren’t enough.  Budget cuts, ya know!

And that brings us to the events of this afternoon.  We had her IEP meeting with the district today, to choose the placement for her on her third birthday next week.  My son’s school says they have a spot for her!  These openings are rare, and we were ecstatic.  The district proposed a different placement some weeks ago, and we sent a consultant in there to observe the program and give us his recommendations.  He was apalled.  I won’t go through the details, but here’s one example to give you an idea:  They do not have enough staff to do the 1:1 instruction autistic children this age require, so they do 2:1.  When a particular teacher was working with one of her two students, the other was banging his head on the table for nineteen minutes.  No one intervened.  This is where they want to send my precious baby girl.  It’s a death sentence.

We presented that report today, and made our argument that this placement was clearly not appropriate for her.  They refused to budge.  Now we go to court.  In the meantime, Audrey’s spot at my son’s school goes to another child.  To make matters even worse, her early intervention services cease on her third birthday.  The regression will be immediate — she will lose all the skills she has fought so hard to learn.

The research is unequivocal — the 2-5 year range is the window of opportunity to help these kids.  This will very likely mean the end of any hopes for Audrey’s future.  Why?  It’s those pesky budget cuts again!

When I watched the debate last night, I was apalled by McCain’s assertion that he and Sarah Palin will fight for kids like mine.  It’s a lie.  He says Sarah knows what it’s like to have a special needs child.  But she’s consistently slashed funding in Alaska for the services these kids need (see expatyank’s excellent diary on what our kids need from government and what McCain/Palin aren’t going to give them).  I see no reason to believe that will change.  After all, she’ll have the financial resources and the “cadillac healthcare” to take care of her son, and nothing about her character suggests that she will hesitate to throw the rest of our kids under the bus.  Gotta control that spending, also, you betcha!

It’s been hard today for me to get a grip on myself and what I need to do next.  As if one calamity were not enough, my grandfather died.  His funeral is Sunday.  And we’re not talking about a “lived 800 miles away, barely knew him” grandfather.  My father was not a part of my life, and my grandparents handled  the lion’s share of my upbringing.  Pop-pop was my daddy.

I can’t even imagine dealing with the demands of this election right now.  I have no choice, though.  I’m on the committee, and I’m running the East Ward headquarters of my city on election day this year.  These last 19 days will be a lot of hard work.  For a while today, I didn’t even care.  But I know this — the lives of our children depend on this election.  It may be too late for my daughter now.  January 20th won’t get here soon enough for her.  

But somewhere, tonight, a woman I don’t even know is giving birth to a long awaited child that will later turn out to be autistic.  Her family’s odyssey of pain is about to begin.  Her child’s future depends on Obama and a Democratic congress.  On November 4th, I’ll be working for her baby.

UPDATE: Thanks everyone for putting this on the rec list tonight.  It’s only my second trip, and it’s always an honor.  But most of all, thank you all for your kind words.  I wrote this because I knew I would find support here.  You guys are the brightest light on the web.

Hello everyone,

I really enjoyed being on the phone conference – I hope whoever listened found some helpful information. The most important thing is not to feel alone and isolated- that is why these places on the internet to connect are great. And that is why I wrote my books, and do a  radio show on Autism One (free) and write the  ‘Ask Chantal’  column in The Autism File magazine (new one check it out at some Barnes and Noble and Borders- ask me for the list of where if you can’t find it).. Also, for those with older kids – any thinking of self-employment as an option for them – I have a free workbook available on my website you can download. My son and I and his teacher have done a few self employment projects. www.chantalsicile-kira.com

Hope you have a great  day. My son has been sick most of the week, so up early trying to get caught up with stuff – you know how that goes – have to take advantage of every minute those guys are sleeping!!!!

I’m excited that you signed up for the 4 day phone conference call
“Autism Back To School.”

You’re in for a real treat. Our speakers are anxious to show you how to make the upcoming school year the best for your child on the spectrum.

In a few days I’m going to be sending you preliminary details on how to dial in to all 4 days of this informative call.

I’ll also tell you how to post your questions before and during the conference call.

Remember this event is a phone conference call so it’s totally free with no travel involved.

In the meantime, mark your evenings for Monday, August 25, Tuesday the 26th, Wednesday the 27th and Tuesday September 2.

Event Webpage: http://www.momsfightingautism.com/teleseminar/

Our Top Speakers:

Mark Woodsmall
Attorney at Law, Special Needs Law
www.woodsmalllawgroup.com

Chantal Sicile-Kira
Author and Mother of son with autism
www.chantalsicile-kira.com

Dr. Mary Joann Lang
Beacon Day School Founder
www.beacondayschool.com

Betsy Hicks
Co-founder Pathways Medical Center and Diet Counselor
www.pathwaysmed.com

Just when you think it was safe to listen to the radio you hear the most insensitive remarks.

In case you haven’t heard Michael Savage has declared that "autistic children" are brats. The Michael Savage radio show reaches millions of people each week. He as always been a controversial host but these comments puts him in rarefied territory.

As moms of children on the spectrum you have every right to be outraged. So its time to pop open the can of whoop a^% on this guy. Comment below and let people know what you think.

The full story:

http://news.yahoo.com/s/ap/20080721/ap_on_en_ot/savage_autism

Well another story on autism has hit the wires again. This time about a child with autism who was thrown off the plane because the pilot deemed the child "unsafe and uncomfortable."

I cleaned up the title because they used the term "autistic child." I guess I kind of cringe when people say that, especially the media.

I wonder if the story was about a child with cancer, bipolar or ADHD would the media say "cancer child" or "bipolar boy" or "ADHD child."   I don’t think so.
Here is the video of the story:

http://www.autism-pdd.net/story1

As always you can comment below.

I want to share with you a personal story. Fathers day was Sunday and it was very special to me. It was my first father’s day! My wife and I adopted a beautiful baby boy last Tuesday. It came as a total surprise to us given that we had been turned down several times for one reason or another.

We got a call from our social worker who had called many times before with tales of possible babies. We didn’t expect this call would be any different than theothers. This call was. In fact, she said buy yourself a car seat just in case.

Well we went to the hospital and met the family and fell in love with them and the lovely baby. In just 3 hours my life was changed forever, I’m a father for the first time. I felt like I was asked to act in a play without rehersal,expecting to know all my lines.

I have been overwhelmed by all the stuff babies need: Diapers, wipes, tops. booties, mits, bottles, strollers and car seats etc..

I felt like I entered the pearly gates when I walked into the local Babies R Us store complete with celestial choruses. God that place has everything!

The past few days have been without much sleep. Beside being zombie like I managed to write out these few words without falling asleep. But such is life. Since I work at home, I spend all day with him and its been wonderful to watch it all happen.

I have a new found respect for moms, taking care of just “one” newbord is kicking my behind big time.

My first father’s day was wonderful. I felt like I was a VIP. My chest was sore from being poked out so much with pride. Well I apologized for digressing here in this email but I can’t help it.

Hello everyone. This is my first blog post.

A business associate of mine posted a article to his blog that I couldn’t believe.

Are you familiar with the show Survivor where members of a team vote someone off the island? You also know how bad a person feels when they get voted off right?

Well you won’t believe this but a teacher in a class asked the kids in the class to select which child to vote out of their class. That child happened to have autism.

I’ll be surprised if this doesn’t outrage you.

Here is the link:

The Article

Please comment on the blog