Autism and love
In previous posts, I have written a little bit about autism, specifically in the light of some of the experiences that I have had with it as a parent. Some of these stories are about sadness, some are about despair (with a twist), some are about anger/frustration and yet some are about hope and love. Regardless of the main feeling, I think all of them can teach us a lesson…
As with any disability, living with a loved one with autism is a challenge, and some days are better than others. These challenges become more apparent with puberty. I may have said this before, but here it goes again; as difficult as puberty is for “normal” kids, it is even worse for kids in the autistic spectrum.
The term “neurotypical” was coined mainly to distinguish between “normal” people (Whatever “normal”means; I insist that no one is 100% normal) and people with autism-like cognitive and developmental disabilities. This needs to be explained, because at face value, when I hear “neurotypical” I hear “normal”, and as I said, strictly speaking, there is more than one kind of “normal”.
The cognitive and intellectual consequences of autism and related conditions are well-known and extensively described. That said, what about feelings? Do you need to have a fully neurotypical brain to have feelings? I am sure that someone have asked that question before and it may have even been researched, but of course, the answer is “no”. People with autism feel anger, despair and frustration as we all do. However, it is very easy to lose sight of this fact. Just think of the following, it is incredibly hard to put yourself in the proverbial shoes of a person with a disability, even worse in the case of neurological conditions, precisely because your ‘normal’ brain is not equipped to put yourself in the frame of mind of a ‘disabled’ brain, even if the owner of that brain is your own son.
Heck, most of the time I don’t even know what I am thinking and I am reasonably sure that this is true for most people!
A couple of days ago, I told my oldest boy (he is almost 15) to do something and he forgot to do it, which I pointed out. He got very upset and said something that I couldn’t quite catch. I thought he got testy with me (that’s normal for a 15 year old, neurotypical or not) and I asked him in my aggravated father’s voice, “What did you just say?”
He said, “I said, curse my autism!”
I froze for a split second and then I asked him what he meant by that.
“You know, autism, my mental disability, what’s up with that?” He said, raising his arms in frustration.
It broke my heart.
He was still very upset; I grabbed him by his shoulders, thinking at 1,000 miles per hour and I said something in the lines of “Listen; yes, you have autism, but you are a wonderful young man and you can learn to work with this; your mama and I love you and we will help you out”. He calmed down, but still looked at me with a deep sadness in his big brown eyes.
With my mind still racing, I told him something like this:
“Look dude, everybody has something, you may have autism, but I am bald, see?”
That made him chuckle a little bit and then he gave me the biggest bear hug that I have ever received.
There is one feeling that I am absolutely sure that people with autism understand; love.
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You know, my oldest son has a slight birth defect in his right leg (he has a large mass of excess blood vessels in his thigh – a hemangeoma – which sometimes causes pain, must be regularly exercised and stretched to maintain full range of motion and has resulted in that leg and foot being slightly smaller than the other). Honestly, I always thought of it as a small thing and was surprised to find out how much it weighs on him. He struggles with knowing that he’s probably always going to have days when he wakes up and can’t just get up and walk because of the pain. And the fear that something could happen to cause massive bleeding in that leg. I had no idea and was caught quite flat-footed trying to find something re-assuring to tell him. It is odd how hard it can be to maintain our empathy for our kids. We see the trouble they cause us, but if we’re not careful we can easily miss all the things going on beneath the surface. Our kids do sit and think, worry and have fears and frustrations just like anyone else – whether they are “neurotypical” or not.
Right on Rebecca….