"...or I am so sorry" are a few of the things that people often say to me when they hear my sons are autistic; the latter typically spoken in a whisper. I realize in some way people saying they are sorry is their way of being nice or trying to be sympathetic. So I forgive it as often as I can, I am only human so I have to admit it rankles me a bit. I love my sons and am not sorry that I have the privilege of parenting them; loving them and being there for them. We as parents make a choice to be mothers and fathers...and I choose to be happy with who my children are. There is no need to be sorry for me. But I understand the motive and know it comes from a good intention.
Next:
"You've got your hands full..." typically finds itself being said while people watch me patiently working with my sons (more usually Aiden these days) to calm down while we are out and about. Autism is often plagued by sensory issues that make the world so scary, and in some cases, so physically painful for them that they appear to be acting up or misbehaving. There are just too many sights, sounds, smells, and even tastes that it overwhelms their senses to a point where they cannot focus their attentions on any specific thing for too long and it causes them undue stress. It almost makes me think of those movies where the camera pans around spinning and swirling frantically in all directions just before someone passes out or faints. This is how it is all of the time for my sons all of the time.
My poor youngest son has these issues the worst of my two children and he has verbally expressed physical pain at times in certain instances. I became a fan early on of compromise and in rejoicing in the small victories and our goals together are often based on their needs. One of those compromise/victory things was keeping clothes on him. It was painful for him and added to the stress he already had, so I just kept working with him and comforting him when we left our home; hoping he would stay dressed and that he wouldn't be too stressed.
Some instances at three were cute and funny, like the time I turned away from him just to pull an item off of a shelf in a grocery store only to turn around and find him completely disrobed in the cart; silent and quick (two minutes, tops). A myriad of playful giggles from other shoppers seeing the little backside of a tiny toddler was enough to make anyone smile. I laughed, too, and then put his clothes back on, telling him quietly, "Clothes on, we keep our clothes on."
It was funny, but a small warning signal went off in my mind that no one would find a nude teenager as cute or sweet.. So I worked on it and I invested in many onesies and overalls and eventually he learned to stay dressed. It is hard as a mom to have your toddler cry and tell you how much the clothes hurt his skin. Certainly the pain left no visible marks, but I knew from his despair just how painful it was. It took years, but I have come to rejoice that he keeps his clothes on in public and has resorted to boxers at home. This I the compromise. At least he is covered. Small victories and I know our work together is paying off.
The sensory issues don't end for Aiden (or any person that suffers from them) at his clothes staying on; in fact the very fact that he is wearing clothing often makes his stress worse as the sights, sounds, smells of people, animals, trees, cars, etc add up and usually a panic attack ensues. He has regularly expressed pain in both verbal and nonverbal ways to his surroundings. One of the nonverbal ways come from biting; not others, but himself. He has a callous on his hand from where he often bites himself when the stress is just too much for him. When it first started happening, I became so panicked and distressed over it that I started trying to temper it. No parent wants his or her child to hurt himself/herself, but in the end only made things worse for him.
Then...I read something written by a young woman with autism that suffered the way my son does (I wish that I could find the link, it has been years now). Her words finally put an insight on what he endures every day of his life, (paraphrasing): ....imagine 20,000 fire ants crawling all over your body every minute of every day of your life with pain so excruciating that the only way it stops for even a moment is by banging your head against the wall. It still hurts, but it's one pain is not thousands of painful episodes reoccurring over and over again.
The proverbial lightbulb went on above my head when I read that, and I realized...that is what Aiden was doing. Aiden is trying to make all of that pain he feels disappear, even if for but a moment. The rate and voracity by which he bit his wrist was equal to the amount of overwhelming pain he was feeling from everywhere around him.
I won't lie. I cried; I cried knowing just how much pain my son was enduring every day of his life. The only thing I really hate about this disorder is that is there are pains I cannot fix, there are discomforts I cannot soothe, and there are things I cannot just make go away. So I work on those things I can. I still try to help my son calm down when he is stressed, but now I am not as hysterically persistent about making him stop biting himself (I still calmly and quietly say, "No bite, Aiden. No biting, sweetheart," I just don't try to pull his hand away).
I understand that for a brief moment...the briefest moment he isn't in as much pain as he was before. It's a small thing...but it will have to be enough for right now. I will take the compromise and wait/hope for a future victory.
My hands are not nearly as full as my heart is and I really feel that when you love anyone as much as I love my children any of my own discomfort compared to theirs is small indeed. I truly believe that anything worth having is worth working for.
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