Thursday, March 15, 2007

Coffee Dates & Honesty

Last night I spent at least an hour typing out a long post that subsequently got zapped into the black hole of the blogging world. I'll try to remember what I wrote.

I don't know what I would do if I didn't have Lisa out here with me. There is nothing like having a friend who really gets it. I've got great friends and family who have been through it all with us. They are so supportive and I never doubt their intentions. But there is something about having a friend who really understands where you are coming from. There are the obvious reasons for our compatibility as friends. We both have twins who are the same age and who go to the same school and are in the same ABA program. We both have children with autism. We both grew up in the same 'area' of Ontario and moved to Calgary at the same time for the same reasons. We both seem to have a very similar approach to parenting and to life in general. Most importantly, we both have the most charming husbands and she and I are both lovely, young and very beautiful. ;)

Lisa and I have managed to carve out some mornings where we can grab a cup of coffee and sit for a chat. Our husbands will likely roll their eyes and assume that we're just wasting time. But I see this time as vital to my happiness and success in keeping my sanity. I really do. Some mornings we just gripe a bit about how tired we are and how we are desperately in need of a shower. Some mornings we just compare our hectic lives and share ideas and thoughts on what we're doing with our kids in their programs. A lot of times we talk about how we should really try to talk about things other than autism, but admittedly, it always seems to come back to that.
I think what really makes my friendship with Lisa so special is that there is no one in the world with whom I can share my greatest fears about our future. Besides Jonathan, could anyone else really understand my feelings?

The truth of the matter is, no matter how much we try to blend in to the rest of the world and just *be* a typical member of society, going about our lives like everyone else, we are set apart because of this thing called autism. It makes us different. Not better. Not worse. Not unique either.. because certainly, every family has its own characteristics or issues that also sets them apart from the norm. But denying that we are different from most families would be like pretending I don't have a nose in the middle of my face. It's impossible to ignore. Autism has added a flavour to our family dynamics that most people just couldn't understand. It influences every single solitary decision that we make as a family. From where we should live, to what our grocery list should be, to how to discipline Jacob, to whether or not we should have pets, what colour paint can be safe to put on a wall, whether or not we can turn on the television, whether socks can be purchased that have seams in the toes, can we accept a dinner invitation, can we go to church, how we file our taxes, how we write our wills........ you get the picture. It colours how we see the world. The other day I talked about how we may not take for granted the same things that some other people might. I know that it affects my decisions in choosing my battles. Is it worth it to fight Owen and Will when they pull off all the cushions from my couch so that they can jump on them? Do I care that my kids are disrupting other fellow shoppers in the grocery store as they howl through the aisles? Should I strong-arm Jake and call him on every rule he breaks when I know how unfair his life is right now? Do we care that other people give us dirty looks when they see us letting Will drink the water from the pool?

One of the greatest burdens that I now experience since autism has entered our world, is that I see other children in a different way. I call it a burden because it weighs on my heart. There are two sides to this. The first is that I now look at children with the eyes of a "been there, done that Mom of a child with autism". I hate having this role. It means that when I see parents dealing with tantrums or behavioural problems with their kids that they find insurmountable or frustrating, I can't help but think "that's nothing. What you're dealing with equals one hour of my life." It also means that I feel like I'm constantly checking kids for the signs. I am now hyper-sensitive to any sign of stereo-typical behaviours, speech delays and communication issues, sensory issues, social ineptness, etc. and I often want to say to their parents "have you noticed that your son does this... have you had him checked out with a developmental ped... ?". I don't ever say it, unless I'm asked or I know the parents really really well. But it's a tough role to play because who wants to be the one to point out to an unsuspecting parent that you think their child might have autism as well? The other side to it is that I am always comparing my kids to others of the same age. I don't think I need to explain how difficult this is for us. I hope that someday it won't be so hard to see other kids playing with other kids, or talking, or sitting quietly in front of a television, or telling their parents "I love you". But it is so hard. It's not always bad, but I'd be lying if I said it didn't suck. I remember a year and a half ago, I had a friend over with her daughter. LeeAnn had her daughter Emma over for a visit and it was shortly after we had received the diagnosis for the boys. I think Emma is a year younger than the twins. I remember looking at Emma, then looking at Owen. Watching Emma harass her mom with questions like "what's that" and "why?" and pointing and pulling at her legs. It took everything I had not to bawl my eyes out in front of that little girl. Because she could do things, think things, express things, that my boys weren't even close to doing. Things that my boys STILL aren't close to doing. It didn't take away the pride I felt for Emma and her parents, that she is growing into an adorable, inquisitive little lady. It just hurt. It's getting better and I am sure that one day I might stop feeling the "what could've beens" when I see Owen and Will's same-age peers.

Now back to my point. Can I talk this way to my friends or to my family? -Sure I can. But do they know how to respond to it? -No one does, nor are they expected to. Would I say the right thing if a friend of mine lost a child? Never. I can't relate and I pray to God that I never can. When I am with other parents of kids with special needs, I like that I don't have to put on the face that everything is fine and dandy all the time. I don't have to nod and smile when people tell me that everything is going to be fine, to take things one day at a time and not to worry. If I voice my true fears- the ones that make most people feel uncomfortable to hear about- friends like Lisa can just nod and smile knowingly, because they've thought the same things about their own kids. There is comfort in knowing I'm not the only one and there is peace that comes with feeling we're not alone. But thank God for the friends and family who aren't on the same side of the fence that we are. Because without those reassurances that everything will be fine, that we're doing a great job, that the boys are doing great.. without those love pats we would be in constant panic.

I read another blog yesterday and it prompted this little rant. It is called Autism Vox and it is written by Kristina Chew, the mother of an almost 10 yr old boy who also has autism. Kristina did a beautiful job of chronicling her family's journey with a post called "Did We Do Enough?: On ABA and Growing Up". Her words really spoke to me and Kristina seemed to voice so many of my thoughts and fears that I have never been able to verbalise. I found a lot of hope in her story because Kristina seems to be sitting in a place where I hope I can be in 6 years. She's speaking the truth and I respect it. I strongly, strongly encourage you all to read her post. I think it will give you a glimpse into the life of another family and what it's like...

"Hurry, hurry, hurry.

That was the message we kept hearing throughout the first six or so years of my son Charlie’s life, after he was diagnosed with autism in 1999, shortly after his second birthday. Get started on Early Intervention, intensive ABA for forty hours a week, and everything else you can—-the young brain is still plastic, those neural connections are still forming and if you do enough you may be able to rewire his brain. And so we did, from the forty hour per week in-home Lovaas ABA program to the gluten-free casein-free diet, to various nutritional supplements, to anti-fungal therapy—-not to mention speech therapy, OT, music therapy and, somewhat later, cranio-sacral therapy with a bonafide faith healer, and various other treatments biomedical and otherwise."

1 comment:

Poppa & Nonna said...

Stacey and Jonathan,
You both were ment to have these children. These kids deserve parents that will fight for everything they need in life and everything that will be put infront of them in years to come.
We believe that meeting Lisa and her family at Grandview was a more than just a chance meeting. Everything happens for a reason, you may just not know it at the time.We are happy that you have Lisa as someone that can understand the things that we can't.
You have been blessed with people in your journey who care about these boys other than family.
Your father and I often ask ourselves where you get your strength from? I guess we always knew that you had it in you, but it is nice to know as parents that you have an outlet in Lisa.
Keep up the good work. You are both doing a fantastic job.
xoxo for everyone

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