Disclaimer: I typed this after watching some TV footage that was emotionally raw for me. The following is just random. Please just bear with me. I try not to be so fatalistic.
I watched Nightline's spot about girls on the Autism spectrum. ABC news will show it again tomorrow at 6 pm EST if you'd like a glimpse of what I'm talking about.
The little girl that they spotlighted was so very much like my son Matthew. I knew immediatly what her mother was feeling. I saw in her so many of the things that I see in him.
The desire to be friendly but the lack of understanding of how to do so. The rigidity. The inflexibility. The world of absolutes...no shades of grey.
Sometimes he seems bossy. It's his way or the highway. But it's just his need for predictability and order. He can't take the chance that something "unknown" might happen.
He tries so hard. Too hard. And then he gets slapped down.
Each time he fails...each time he is hurt....makes him less likely to try again.
But without practice, he'll never figure it out.
It's a vicious cycle.
Some days, I wonder how I can help him and his younger brother. Some days, I wonder if they will ever live a "normal" life. Many days, I feel like a failure and wonder what was going on in mine and ZD genetics that caused this.
Other days, I wonder what the big deal is. I'm oblivious to their faults. The daily things we do to accommodate their needs just blends into our regular day. And I justify my activities by saying that every parent deals with these sort of things.
But that's not true.
Most parents don't have chewy tubes and speech practice books.
Most parents don't buy weights for shoes.
Most parents don't have to feel the bed sheets to see if they are tactile correct.
Most parents don't have to give details of every single activity for the day.
Most parents don't own therapy equipment.
Or buy glasses based on their finger grips and weight.
Or have to reconsider silverware because the shape might be cause someone to be orally defensive.
Or not buy shirt with collars because collars are detestable.
As are shirts with embroidery or patches.
But....right when I'm feeling down I remember that some parents have children on the spectrum are profoundly Apraxic. Some never speak.
Some have severe behavior disorders. Some can be violent when they have tantrums.
Some can not function on grade level. Some can not play baseball on a mainstream team. Some will never learn to ride a bike or drive a car.
So I try to remember to be thankful. That things are not as bad as they could be. And I try to remember that progress has been made. Hope should not be abandoned.
Small steps.....very small steps....will lead somewhere, someday.
And while they will never, ever...ever...be "cured." They might someday be happy. Really happy.
Edited to add: I'm fine really. Every now and then, the big brick wall that I have supporting me finds a little weak spot. Then I'm just left vulnerable for a bit. I've found that if I keep soldiering on...I'll be back against that nice strong section again.
4 comments:
Wish I could offer a hug. Soldier on.
We are so challenged and blessed by what we deal with and what we are helping our kiddos to deal with.
Think of all the lessons we've learned from our kids. We're better parents and probably better people for it.
It's okay to vent or be sad or angry about the fact that we didn't end up with perfectly normal kids and that they have things that they will have to deal with all their lives. But they are such incredible people, who see the world in such different ways, and we get a glimpse of that on a regular basis. Even tho it's hard, and we have some days that are almost overwhelming, I know neither of us would trade these guys for anything in the world.
My cell phone is missing, so I can't find your number, call if you want to talk.
Hi,you don't know me. I'm a father of 3 boys and a fantastic wife. I read your blog because it gives me insight into her world and I can relate in many, many ways to your world.
No family is "normal" We are all thankful for what we have daily.
Thank you for doing this blog - it made me appreciate my family as you do yours..
I've not one to say this - thank you - and I'm sure your husband feels the same.
ody3@aol.com
Great post. My son is not on the spectrum, but due to abuse from his birth mother suffers much of this [to a lesser degree] (He also has other "labels") The predictabilty--needing to know exactly what/exactly when. Trying to be friends but being so messed up by love = abuse that he can't quite do it. You are right, parents out there living this find it "normal." And, it is normal after a shockingly short time.
You are doing a great job!
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