I work in therapy and I can’t even spell Asperger’s. I had to google that in fact because I spell it so poorly spell check can’t even help it. Jenny McCarthy would be so pissed. But now that we are on just the “spectrum” crap, Blair is just flat out considered mildly autistic. I personally think they dumped Asperger’s because it’s so hard to spell. But enough about that.
I have a beautiful, loving, I can’t say enough great things about him 4 year old named Blair.
Truth is, I’ve always thought Blair was different. Well, not always. I guess around 18 months is when I started my “something is different” speech. Truth is, my speech was sometimes a rage because I couldn’t believe no one saw what I was seeing. There were meltdowns. Oh the Blair melt downs. And then the Blair moods, as I called them. You could tell what kind of day it was going to be within 5 minutes of him waking up. Of course now I go back and look at videos of him as a like 8 month old and can see differences between him and Jules, for example. Not just simple differences because they are different kids. But different because Blair is…different. Blair didn’t engage with you. Blair looked at you. He looked content, but wasn’t happy all the time. He didn’t copy you. He was quiet, he was…there.
Blair’s moods and outburst over the most asinine things have caused conflict between everyone involved in his care. My dad has become so frustrated he started blaming us having dogs for Blair’s stress. My mom flat out once said she was scared that we were “losing him mentally.”
I, of course, have cried more than anyone thought possible. I’ve yelled at Adam countless times for his “oh, he’s just shy” bullshit when Blair would walk away from kids trying to play at the park or when he’d blow me off about how awful taking him to preschool was because he’d scream and growl and hold onto things to avoid other kids or leaving his regular schedule.
I thought once there was a diagnosis I’d feel relief, but that’s not true.
I answer shopped; at least that’s what it felt like. I’ve found the good news locally is that no one wants to label a child autistic. The bad news is that no one wants to label a child autistic.
I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
While I didn’t yell at my wife, or make any physical advances, No, what I did was worse.
I made her cry and hide in a corner. My own wife.
And it keeps happening; it’s becoming more frequent.
I grew up in an abusive household in the United Kingdom. My mother, sister, and I lived under my father’s proverbial gun. My mother and sister were sexually assaulted by him.
His control ruled my life and dictated that anything I ever did wasn’t good enough. When I’d get straight A’s, I was told they should have been A+’s. Eventually, I rebelled a little which was for my own good.
We’d gone out for a walk in the forest and I needed a rest, so I hung back and sat down to catch my breath. He came thundering down, and with no no one else around, he knocked me down, and started to kick the living daylights out of me. I lost all control. I began to bleed from my head. Then, he picked me up and dragged me in front of a crowd of people.
Not a single person tried to stop him, not a single word of dissent.
From that point on, I decided I should be alone. Beside my mother, no one cared about me, and eventually she began to abuse me as well. It was a vicious cycle that eventually broke down when he divorced her and moved away with his mistress.
But after the incident in the forest, I just wanted to be alone, not exist at all. It was compounded by the fact that I was bullied every day at school at school as well. When I went to counselors or my mother, I was usually told, “you’re just being stupid,” and was written off.
Eventually I went to University, during which time I almost managed suicide with an overdose of painkillers. The next morning, I went to the doctor and was sent straight to the ER. It was no comfort when I was told that the amount I’d taken was enough to kill a “normal” person. Around this time, I’d disowned my father and there were threats that he and some of his brothers planned to descend upon the University to “correct” me.
I saw killing myself as the only option.
My now-wife has stood by me no matter what. We met playing games on the Internet, and eventually I moved to the USA to marry her. We’ve been married over a year, I’m doing the job I always wanted, and we’re expecting our first child.
She suffers from Asperger’s Syndrome and sometimes, as is the case with autism spectrum disorders, doesn’t know how to act or respond appropriately. It feels like I have to organize our daily lives because she can’t or won’t.
I love her to pieces and wouldn’t give her up for the world. Recently, however, I’ve started to make snide comments to her or vent at her about stuff over which she has no control.
For example, we’d just had our apartment building set on fire by some careless fuckwits, and while the apartment wasn’t damaged, it did smell like smoke. The Red Cross had us stay in a hotel, and when we returned home, we both set about organizing our apartment.
When I ask her what else we needed to do, she says that we need to grab CDs from the car so she can rip them onto her laptop. I’m thinking,
“What the fuck? We need to inspect the apartment in case we need to make any claims, and you want me to go downstairs and grab CDs? Seriously?”
Then I say it aloud. I berate her. I berate her because I now have to be her eyes and ears. That I have to organize her day for her. How much it all stresses me out.
The one thing I swore I’d never do – abuse my own wife or kids like I was abused – I’m doing.
And now, I feel like scum for breaking such an important promise to myself and undermining, hurting her.
There’s a big part of me that feels I should leave quietly and not return so I don’t hurt her anymore. Maybe go somewhere, be alone, and die in a corner quietly. Because that’s what I deserve. And she deserves so much better than me, a broken person who doesn’t know whether he’s coming or going.
I just don’t know anymore. I don’t know whether I should fight it, give up trying to change my fate, or remove myself from the equation permanently.
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
This is adapted from something I posted June 18, 2010: Autistic Pride Day. I’m bringing it over here because I’m thinking that if you or a loved one is newly diagnosed with Asperger Syndrome, you might not want to hear any more doom and gloom. You can find plenty of that in the many wonderful, helpful, but somewhat depressing textbooky tomes that are available at your local library. Asperger is challenging, yes. But it is also kind of awesome.
Autistic Pride Day. I know what you’re thinking: Didn’t I just see a bunch of copied-and-pasted status updates on Facebook about that a few months ago? Nope. That was World Autistic Awareness Day, which is April 2 every year. World Autistic Awareness Day is about letting you know that autism exists. Autistic Pride Day is about letting you, the neuro-typical person (or “NT” to us hipsters) know that autism can be kind of awesome.
There is a whole world of autistic pride and politics that I’m just learning about. (The most helpful piece of advice I can give you is that getting worked up about the politics of autism does not help the newly-diagnosed person one bit.) Autistic Pride Day is promoted by Aspies for Freedom, an organization that pushes not just for autism awareness, but awareness that autism has both advantages and disadvantages.
Let me just say this: I’m pretty sure the people at Aspies for Freedom are talking about people with fairly high-functioning Asperger’s Syndrome. If you’re the mom of a severely autistic child who’s still nonverbal at age 6 and never smiles at you, you’re probably ready to tell the nice people at Aspies for Freedom that neurodiversity can suck it.
Little Dude is more along the lines of the high-functioning Asperger’s. And I can certainly say there are distinct advantages and disadvantages to our situation.
In the spirit of Autistic Pride Day, here is my Top Ten List of Asperger Syndrome Advantages and Disadvantages.
Disadvantage #10 Little Dude eats the same thing, every day.
Advantage #10 Meal-planning is a snap.
Disadvantage #9 All Legos, all the time.
Advantage #9 May grow up to be the next Frank Lloyd Wright.
Disadvantage #8 Obsessive-compulsive behavior means we can’t leave the room unless the television and the power strip are turned off.
Advantage #8 Asperger’s Syndrome is the new “green.”
Disadvantage #7 Makes odd, surprising noises.
Advantage #7 Maybe other kids will think he’s beat-boxing.
Disadvantage #6 Despite having advanced vocabulary, Little Dude’s speech is sometimes very unclear.
Advantage #6 Woman behind me in check-out line doesn’t realize Little Dude is talking about testicles.
Disadvantage #5 Does not make eye contact with friendly pediatric nurse.
Advantage #5 Does not make eye contact with anyone at Walmart.
Disadvantage #4 “Motor-planning deficit” means he struggles to take off his own shoes.
Advantage #4 “Unusually intense, narrow area of interest” means he can beat adults at Wii Lego Star Wars.
Disadvantage #3 Talks incessantly about Legos, Star Wars, and Lego Star Wars.
Advantage #3 No longer talking about Dora.
Disadvantage #2 Sometimes says insensitive or inappropriate things.
Advantage #2 These things are hilarious.
Disadvantage #1Random muttonheads Concerned strangers ask me if I think he’ll be ready to potty-train sometime soon, why is he flapping his hands, and oh, you mean he’s like Rain Man?