A year ago my life was flipped on its head, and I had no idea that April 2nd was World Autism Awareness Day. I still don’t quite understand how “awareness” brings about what I am really hoping for, (understanding & acceptance,) but hey, I’ve only been doing this for a year, so who am I to start demanding changes?
It’s been a long, interesting road full of growth and challenges since that day when I was told we were probably “looking at Aspergers Syndrome” for my then 2 year old son. And reflecting back over the past year, I see how many big strides The Boy has made. I see all of the things I’ve learned about myself, my son, my family & my world as it relates to Aspergers Syndrome. Here are some of them:
1. Two steps forward and one step back, that’s what progress looks like in my world. We have good days & we have challenging days. It doesn’t mean anything when The Boy has a day of challenges & seeming regression, (well, except that the wine comes out at 5:01pm,) but it means everything when he has a day of good choices, focused concentration & positive play.
2. I don’t always display Mother Theresa-like patience & that’s ok. I’m not perfect. I’m just a woman who happens to be a mom of a child with Aspergers Syndrome & I’m doing the best I can … usually. I’m not a Doctor, nor a trained therapist & I don’t always have all the answers. Sometimes I’m too tired or frustrated to think of the perfect way to handle a melt-down. I’m learning.
3. It’s been a long time since I’ve read a book just for fun. My reading list mainly includes research about Autism & Aspergers, Sensory Issues & IEP’s. Sometimes I get jealous when I hear people talking about this great book that they’re reading. For the past year, I’ve been reading like a lackadaisical college kid cramming for an exam at the last minute, because time is not on my side.
4. Having a child on the spectrum can be very isolating, especially because he “looks” like a typical kid. I’ve learned what our limitations are in terms of play-dates & birthday parties. It made me sad last spring when we had to leave a kid’s birthday party because The Boy was wildly out of control & overwhelmed by the unstructured environment. Generally, it’s better for him to have smaller, focused play groups with me right there ready to intervene in case behavior goes awry. It’s not the way I envisioned play dates & yes, I get a tinge of jealousy when I look over to see a group of my mom friends engrossed in conversation while I’m helicoptering my son. Who to tell, what to tell them, when to tell them? Do I want to delve into a lengthy dialogue of what Aspergers Syndrome is? Not usually.
5. Guilt will eat me alive … if I let it. It’s that dark vortex in my mind where I can spiral down fast if I’m not careful. Guilt over how I handled disciplining The Boy that day – too much or not enough? Guilt over if I’m doing everything I can for him, guilt over mistakes I’ve made: will they be detrimental in the long run? Guilt about whether I’m balancing all aspects of my life properly; if I’m coming up short in my friendships … guilt, guilt, guilt. It’s a useless emotion.
6. Run the race with blinders on. Who cares what other people are thinking as they judge us at the grocery store while I bribe the boy with cookies & cars? Who cares what other people think when The Boy blurts out some incomprehensible word like “beak!” seven times in a row after they ask him how old he is? Who cares? Who cares that The Boy isn’t really interested in riding a bike or kicking a soccer ball? It’s not fair to compare him to other kids & it’s not fair to compare myself to other moms. This is our life & we’re living it the way that’s best for us.
7. No matter how much you think people understand – or how much they want to understand – they won’t really to be able to, and that’s ok. I love my close friends and (most of) my family for just trying to. They have been a source of great support and love for me, The Husband & The Boy as we have made our journey through the world of Aspergers. But the truth is that they can’t understand everything. They sometimes take The Boy’s lack of affection too personally. They don’t understand when they ask him a question and he is gazing off in the distance, wrapped up in another world why he cannot answer them or why he’s so literal. They don’t understand that sometimes things are outside of his comfort zone and no amount of reasoning or cajoling will get him to be “ok.”
8. There is very little “me-time.” I knew when I became a mother that my priorities would shift & that the focus of my world would be my child. But having a child with special needs is even more time consuming & demanding than I would imagine have a typical child would be, (I could be wrong about this.) But me time is important, (another post about that later,) lest you lose your mind. It’s hard to find extra time when you’re juggling IEP’s, therapy appointments, potty training and counting down to transitions. And going away for a weekend is nearly impossible! Who can handle The Boy besides me and The Husband?
9. Everyone has a slew of ideas on how to help … some work and some don’t. Every therapist, every teacher, every specialist, every doctor, every book has a different idea on how to support The Boy in making good choices & correcting unwanted behavior. Some of them work well, and some of them work for a little bit and then don’t work at all. It’s worth a shot, but don’t make yourself nuts about trying every single suggestion given to you. Just because something works for one kid on the spectrum doesn’t mean it works for every kid on the spectrum.
10. It’s going to be a long road … and it’s going to be really hard sometimes. After this last round with our school district, I had the sudden realization that my life was going to be one fight after the other with them for the next fifteen years! It was overwhelming to think that every single school year I’d have to put on my boxing gloves and get into the ring with people who only view my child as a number or a name on a piece of paper. But that’s what it is & The Boy is lucky to have me, a fighter, as his mom & advocate.
So, happy World Autism Awareness Day I guess. Truth be told, I really don’t know what “awareness” is going to do for people who have Autism or Aspergers … Does being aware make people more compassionate? In my opinion, no, it doesn’t. I think education is more beneficial than awareness, but perhaps awareness is the first step. And maybe being aware leads to being curious and opening a dialogue with someone about what Autism is, or what Aspergers Syndrome is & that’s something I can support.
I read a blog last night called Living On The Spectrum: The Connor Chronicles that I thought summed up the way I feel quite perfectly. I would love to see every child educated about autism & every spectrum disorder. Because in my opinion, only through education can people truly begin to understand what it is like to live with Autism or Aspergers. And with understanding comes compassion. And with understanding and compassion, we can hopefully arrive at acceptance.