This will be an emotional diary. It will take me some time to write, because I am crying as I write it. There will be no links or supporting data. No breaking news. I am hurting now, and I just need to get this out. Maybe I will get some support, constructive advice, or at least some sympathy. If nothing else, at least I will have had a chance to get some of this out of my heart and onto the page.
Warning to trolls: I am a mother with a gaping hole in my chest where my heart used to be. Stay out of this thread or prepare to be eviscerated.
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.
As I said to ghaucer2 in the comments:
I don't know why, but just hearing words of support like that really do make a difference. After today's meeting, I felt like the whole world hated my sweet daughter -- that my husband and I were the only ones on her side. It's nice to be reminded that outside of that conference room, is a world full of good people who really care.
And in 19 days, those people are going to put their votes where their heart is.
UPDATE 2: Several commenters have expressed the opinion that the title of my diary is misleading -- that "lost" should only be used regarding physical death. I understand how someone who's never been faced with these kinds of challenges would be confused about that usage.
So let me be clear: The decision of my school district has taken away my daughter's future, in a very real sense. When I entered that conference room, she had a good chance at building a semi-normal life. When I left, she had a new future, and it's not a good one. We now have to get on the 10 year waiting lists for group homes. We now have to face the reality that our daughter has an institutional future. So yes -- we do feel that we lost our daughter today.
I never meant to suggest that my family's experience is equivalent to the actual death of a child. Of course not. That is not what I meant by "lost my daughter," anymore than when we say "McCain lost Virginia" we mean that the population of Virginia has died. I am sorry that some were confused. I would change the title of my diary if I hadn't been accused by some of these same commenters of deliberating misleading people to get extra sympathy. Frankly, it just makes me feel defensive of the title. The bottom line is that this is how I feel -- that I've experienced a great loss. Please try to understand that before being critical. It really is the last thing I need to hear now.
And thanks again to the vast majority of you who have been so very supportive. My husband wants to print out these comments to look at when he feels like despairing. You really have given my family something special today.
UPDATE 3: It has been suggested in the comments that I set up a Pay-Pal account for donations. It is true that we've accrued thousands in debt over this already, and it's just beginning. At least we have the credit to fall back on -- thousands of families like ours don't have that option. So I've thought hard about how folks can help, and I think the best thing you can do is send one more donation to the Obama campaign today. That's the best hope for our kids now!
UPDATE 4: Great news! When I wrote this last night, we were in the position that even if we prevailed in court, Audrey would lose -- her spot in school would be lost and a lapse of her early intervention services would have crippled her progress.
I've spent most of the day on the phone trying to avert this disaster. Success! My son's school has agreed to hold Audrey's spot for her, at least for now. And her early intervention provider is going to continue her therapy until the case is resolved. Now all we have to worry about is our day in court. There are no guarantees, but I have something now that I didn't have last night -- real reason to hope.
I'm not superstitious generally, but I can't help but feel like it's the mojo you've given to my family today! Thank you again, Kossacks, for everything!
UPDATE 5: I don't know what to say. One of you has just given me an anonymous lifetime subscription. I just got the e-mail. I had to read it twice to be sure it was real. The kindness is amazing in and of itself. But when you add in the fact that it was anonymous...well, that's how you define what it means to be a good person, I guess.