I've spoken at length about Andrew's diagnosis and undiagnosis and the arrogance I have as a mother to assume I can will him to be "normal" and label-free. I'm now a graduate student (pending GRE results) in special education and I'm becoming ok with not knowing what the future holds. I don't need to figure it out today and I've realized with each chapter of my courses that we can treat Drew's weak areas one at a time and continue to check them off and add new ones as he grows. It's ok. He continues to improve and move one notch closer to normal or typical ( I hate both terms) with every minute of effort we apply. It's ok that one day, he might not move up any more. It's ok because he will have done more to reach his full potential than other children his age. I'll accept that, if it happens, and I will continue to love him unconditionally and support him and fight for him...normal, delayed or above average.
Brian is my lifeline. He doesn't deny anything I say about my fears but helps me work through things. He came up with a wonderful way to eliminate Drew's hand flapping. He tells him that if he's happy and he knows it, clap his hands! He says it in a funny way that makes Andrew catch himself midflap and change to clapping. Clapping is much more socially acceptable and we're seeing him resort to that action now without prompting! Our next task is to limit Drew's policing. He'll tell peers not to do something, which is cute now but could be socially isolating in the future. My greatest fear is that Andrew will experience bullying or isolation from something over which he has no control.
The day Drew was diagnosed I became closer to a co-worker who has a son with Asberger's syndrome. She had been there when I foolishly tried to continue that day at work. She had dried my tears. Pamela has lived with Asperger's for the last 5 years. Her son wasn't diagnosed until 13. My texts say it is a disorder but I like syndrome because those with it are quirky and unique but don't have a disorder, in my view. They are smart and funny and lovable but a little different to you and I. They might not get the "common sense" joke you toss at them...the first time anyway.
Drew's characteristics are consistent with Asperger's though I continue to resist any labels at this time. He is just too young. Being the person I am though, I chose to study it in each class. I want to know more, just in case. Below is Pamela's letter I'm using in a class. It hits home because so much of it is similar to us. I just want you to see how she has coped so you can all continue to support us no matter what the future holds.
~~~Laughter Through the Tears~~~
By Pamela Federline
Living with and raising a child with disabilities, I craved something normal. My marriage hadn’t been normal. The last years together as a family had been like living on a yo-yo that kept me edgy and unhappy. Drugs and alcohol will do that to you. Not me. I was a bystander who wouldn’t touch the stuff if my life depended on it. My son was a victim of it. His father couldn’t leave it alone – if it wasn’t drugs, it was alcohol. If not alcohol, it was gambling. And the cigarettes I deplored were a constant. He truly personified the addictive personality. He wasn’t a bad man. He just didn’t seem to care that he hurt others with his abuse. I should have seen that more clearly from the beginning, but I didn’t. When the blinders were lifted, it was time for me to get a life jacket, grab the kid, and jump rather than sink with the boat, as my father so aptly pointed out.
My son didn’t handle change well. I knew it, but my life was so unsettled. I was trying to find the perfect balance of being happy with work, happy in a relationship, and caring for my son – not always juggling the three in the right order or with equal balance. I finally gave up on the relationship ball. It was simply too heartbreaking to bring someone into my life, only to find that they couldn’t handle the challenges I lived with at home. I can remember my father asking me before he died, “What’s happened to my happy girl?” The weighty question seemed to whisper in my head for years after my divorce and the death of my father.
The formal diagnosis of Nick’s autism at age thirteen helped me put so much in perspective. After all the years of behavior problems I didn’t understand, and learning disabilities that seemed to rule Nick’s days and my nights, I had reason to pause and feel guilty for every argument with him when he was filtering it through his autism; for disciplining behaviors he simply couldn’t control; for somehow missing the early red flags; for bringing a few men in my life who didn’t want to be a part of my son’s life; for moving him so many times when all he really wanted was to stay in one place near his Grammy and Grandbear. On the other hand, it’s a futile guilt. Not one you can atone for, but one you must learn to forgive within yourself.
Then, one rainy day in October 2003, my son and I were unpacking a box in his bedroom, finally finding time to get to the leftover boxes stuffed in his closet from moving in the spring. This was a normal event for us – moving and unpacking boxes. It wasn’t unusual for things to just stay in boxes, be retaped and moved again. It seems like a lifetime ago, but between Nick’s fifth birthday in 1995 and that rainy day in 2003 at age 13, we had lived in three states in two duplexes, two apartments, one house, one condo, and a bedroom at my parents before moving to a rental house in Wilmington, N.C. Just a few months before, he had been formally diagnosed with a form of high functioning autism called Asperger’s Syndrome.
The enormity of how much change he had been forced to live with sometimes overwhelmed me. For me, trying to make home stable became really important. However, this was made difficult by being packrats. Both of us had trouble letting go of things that somehow tied us to the past. For Nick, it was even more difficult. I think that all the changes in homes led him to hang onto his toys as the only things he could rely on that didn’t change.
I usually kept a donate box and trashbag handy as we went through boxes to try and weed out things that he didn’t need or had outgrown, but everything seemed to get an argument. I was resigned to having to wait until he was out of town visiting family to get rid of things he would not likely miss unless he saw them going away. Most of it would probably end up back in the box in the closet, at least for a while.
Nick had wearied of the process and was playing with one of newly rediscovered toys when I pulled out a bright orange envelope addressed to Nick in a familiar hand with an address I hadn’t been to since 1997. My father’s handwriting swam in my eyes as tears silently started falling for a loss still so palpable, now six years later. I opened the envelope and pulled out the card, bracing myself for the sharp stab of pain at whatever whimsical thing he would have written to his first grandchild. “Boo” said the words in a bubble from a ghost on front, and on the inside, a Happy Halloween wish from his Pop Pop and Arno, the dog. He had sent the card to Nick, probably with a five dollar bill in it, when he was about four years old. “Daddy,” I thought. Oh how I missed him and the support he would have offered over the years. The tears started falling more swiftly and I could no longer hide them from Nick, who turned around at my sniffle and asked with a concerned look on his face, “Mommy, are you okay?”
“Sure sweetie. I’m okay. I just found a card from Pop Pop and I haven’t seen his handwriting for a while, so it made me a little sad.”
“Okay,” he said, and turned back to his card sorting, oblivious to the pain I was feeling. The whole concept of missing a grandfather he barely knew must have been foreign to him. At the time I thought maybe autism is a blessing if it can shield you from such a deep well of pain.
I wiped the tears away with my sleeve, replaced the card in the envelope and set it aside, reaching into the box again for the next item. As I pulled a freezer bag out of the box, my hand stopped in mid-air. I was holding what might have been the first red flag of autism for my son. The red flag I missed because no one ever asked me if Nick had strange play habits until he was thirteen years old.
In my hands was a plastic bag with probably 50 rubber tires of varying size in it that Nick had taken off every vehicle bigger than a matchbox car when he was younger. He would set the tires aside, much to my dismay, leaving them for me to clean up. Patiently, or impatiently, for years, I matched tires to cars and trucks about once a week until one day I’d had it. He was about seven and I was tired of picking up and matching tires. My mind instantly went to the day I was filling out an assessment form about Nicholas just a few months before; a form that with every question was making me that much surer that he probably had autism. Then, there it was, the answer to a simple question that had somehow been waving wildly in my face for years – and one I had missed.
“Does your child have unusual play habits like taking the tires off cars and trucks and playing with them separately?” Check. Yes.
All the sudden, sitting on the floor in Nick’s room with that bag of tires in my hand, the absurdity that I had been asked that question and it somehow led, in part, to a diagnosis of autism, burst a well I could not contain. I had just dried the tears from a reminder of a loss so deep, only to be confronted with the other huge loss in my life - the fact that my child would never be ‘normal.’ I started laughing hysterically – mostly because I still had the bag of tires at all - the evidence, as it were. The tears started pouring down my face again, but this time it was from laughter. Gasping for air, I turned at Nick’s tap on my shoulder and an even more concerned look, “Mommy are you OKAY?,” he asked, emphasizing the okay like “can’t you hold yourself together? “
After a few minutes, I finally managed to pull myself together, “Sure, honey. I’m okay.” And as it turns out, you’re okay.
I still have the bag of tires. They are a talisman of acceptance and forgiveness for lost years of missed opportunities at a diagnosis when he was younger. I’ve often wondered if Nick has memories tied to moments that I cringe remembering – the times I yelled, cried, begged and jostled to find the good behavior hidden inside him; the cruelty of peers who couldn’t accept the awkward, quirky boy; the teachers who asked him to do things he couldn’t do in the different world he lived in and punished him for it; and the men I loved who couldn’t love him. But he doesn’t seem to harbor those moments in a dark place. Instead, he has become a resilient, quirky almost adult. I support him when his tears struggle to fall; I diffuse the anger to release pent up frustration at me or others; and, I try to soften the disappointments that come with being so close to normal, but not, by teaching him to laugh at the absurdities in life. Like finding a bag of long forgotten tires and laughing through the tears.
