An Amazing Young Man

Nineteen years ago today, I became mother to a beautiful baby boy. It had been a horrible pregnancy, so this was it. He was my second and final child, but my life was complete. I had a daughter and a son. Nothing more was necessary.

 

I couldn't possibly know then just how much he would change my life. So often, we hear that autism is a "devastating" diagnosis, and we hear a lot about "curing" it. To that, I must ask: "Cure what?" Sure, I would love for him to be able to go through life without struggling to tell me what's going on inside his head, but I'm grateful for what he has. He can speak. He can communicate. I often feel the need to prod him for more detailed information, especially when it's important that I know, but that's a fairly minor thing. He has a sweetness about him that I doubt I'd find in a "typical" child his age. He's honest to a fault, and...it can lead to awkward moments, but he is also polite, kind, caring, and--yes--loving and empathetic. He knows when we're upset, and the thing that saddens me is that he so often takes the blame, even when he's been repeatedly told that what we feel has nothing to do with anything he's done, or hasn't done. He strives to please. I have never deliberately impressed upon him the need to be "perfect," but he seems to be extremely disappointed when he makes mistakes or does something he thinks will make us less than happy. That's what I find to be the most difficult thing about being his mother. It's not the "stimming." It's not the spontaneous "babbling" or talking on (and on...) about his imaginary friends, celebrity's cars, or whatever his fixation of the day happens to be. He is autistic, and he will tell you that. He wears his autism like a badge. It's "AWE-tism." He's proud of it, and he should be.

 

There are many amazing things about my son. He has a great sense of humor, and even when we burst out laughing at a time when he doesn't expect it, he doesn't show embarrassment or seem annoyed. He likes the idea that he can amuse us, even when he doesn't try to.

 

He also has a keen ear for music, likes to sing, and can find his way to anywhere, from anywhere. He gets the singing interest from me, but certainly not his direction sense! If I am ever confused about which way to go (which occurs daily!), he can direct me, even from somewhere he hasn't been in years.

 

We also hear that autistic people aren't affectionate. Pardon me, but...BULL!! How many adult men still kiss their mother every night before going to bed? Mine does, and he initiates it. When I'm sad, he knows, and he is distressed by it. He'll hug me and assure me that everything will be okay. When we came home from an appointment years ago that didn't give me any answers, I broke down after walking into the house. I said I was sad because I didn't know how to help him, and he said, very matter-of-factly, "It's just me. I'm just Andrew."

 

Yes, my sweet son. You are Andrew, and you are a miracle in my life. Thanks for being my greatest teacher and inspiration. I love you with all of my being. Happy Birthday.

 

Love always,

 

Mom

Andrew's Big Day!!

So, for the past several years, I was anxious, and yes, even scared, thinking about what path my son's life would take. As I mentioned awhile ago, we recently obtained legal guardianship. It wasn't something I wanted to do, but I knew it would be necessary, since he is still, at almost 19 years old, unable to make basic decisions for himself regarding his finances, education, health, and social relationships without close supervision and guidance.

It's been a relief to have the process finally over and done, but of course, there is more ahead. For the past several months, we have struggled with his post-high school services. College is not an option, although who knows whether or not it ever will be. We knew we had to prepare him for employment and managing his life as an adult, with our guidance. We have always pushed for as much independence as possible, which will probably include some sort of part-time employment. He receives SSI (disability income), but he is capable, we believe, of some sort of work a few hours a week. He could never support himself, but the skills can be taught, and I think we can find him something he enjoys doing, too. It will fill his time and make him more productive.

In the past several months, the question, of course, was whether or not he could enter some sort of vocationally-based higher education program, and we worked hard to prepare him for the one that seemed to be the best, and which he wanted most: Transitions Academy. This state-run program would be funded by the school system and allow him to increase his independence and work ethic.

Long story short, we weren't able to place him there. We had to have the school system's blessing, and...well, we didn't get it, so we have worked to find a suitable alternative. The school kept pushing theirs, and...anyone who knows me knows I have fought tooth and nail to get him educated for the past 10+ years, and we were counting the days until he'd be finished. In fact, every day--no kidding!--he'd say anxiously: "I'm almost done with high school." I think he craved more, too.

So, we managed a compromise. He would finish his academics this year and attend the school's "transitional" program part of the time, and some hard-core vocational instruction next fall with a state-run agency. He had to be present at the meeting, and he protested--rather adamantly--that he was going to the Academy. The brilliant agency program coordinator insisted there "wasn't room," and that we would try to prepare him to enter it the following year. That seemed to satisfy him...mostly, but I also insisted to the school that he really believed graduating ("walking" with his class and receiving a Certificate of Completion so he can continue to access state services) meant he was truly finished with high school, so, I proposed, we should look at a date to prepare him to "transition" out of the school program and enter, full-time (25 hours a week) into the agency program. Finally--some agreement!!

So, we had to prepare him for "graduation." This meant completing a Senior Project, which entailed research, a written and oral presentation before a panel of judges, and evaluations from each of them. His PASS therapists and I worked very hard (although I have to say that they--one, in particular--did about 99% with him), and we all wondered how he did. A teacher involved with walking the kids through what to do reported that he did "very well," although I wasn't permitted to be there, so I had to take her word for it.

Then came June 12th--graduation day. He had counted the minutes! We sat in the local community college field house, eager to see him accept his certificate. Liz and Kim, his PASS therapists, were there, too, and we all saw him go up onto the stage. Then, a couple of days ago, I discovered his Senior Project binder, containing his evaluations from all of the judges. He basically made an "A," although they were graded "pass/fail." Only a couple comments were made, of 24 points on which they were judged, indicating "below average": eye contact and voice volume.

I won't lie; there were some tears, and there still are. Sixteen and a half years ago, I was honestly terrified that there was no hope for my son's future, as all the books out at the time said, but I also knew that the same had been assumed about me in all the published literature of the '70s...and even much of it today, because of the medical issues I live with. I got very little help, so why shouldn't I hope for him? I did, I still do, and I'll never stop.

Andrew, I love you so much and am so proud of all your accomplishments. Keep going, Sweet Boy. You amaze me every day with what you can do.