Days 118, 119, 120 and 121: Not Entitled Yet, Privileged

Days 118, 119, 120 and 121 S-366-LYDoG:

So… Finals… Yup…

Four days behind although, today’s I think, will be a good one to us as a culmination of sorts. It is the last day of Autism Awareness month and I want to wind-down this segment of my daily “gratitudes” by talking about all of the things I never knew I would need to know about autism. The experience of mothering a child on the spectrum has opened my eyes to just how “small-minded” I was … probably still am. I thought I was pretty open-minded until Sean came along. I am grateful for these changes.

So, here goes …

ToleranceI have learned, first and foremost, never to judge a book by its cover, a child by his/her actions, and especially a parent by the actions of their children. I have learned that looking normal is not always a good thing, oddly enough. (Any autism parent knows how exasperating it is to hear the phrase, “But he/she looks so normal.”) What is normal anyway and who decided that? I used to watch parents in the grocery store and think “Wow, you clearly do not know how to discipline.” Although, had you asked me at the time I would have sworn up and down that I certainly did not do that.

Nope, I did.

Until it was my turn to deal with a melt-down, the origins of which were completely unknown and the likes of which have never been paralleled. I remember the first time this happened to me and the shameless stares of the adults around me, even the judgemental stares of those who thought I was not doing my motherly job well enough. I do not judge them in return either because, guess what … I’ve been in there shoes, the shoes of the unknowing onlooker.

I’ve learned that normal is a sliding scale. I’ve spent most of my life worrying about fitting in, about catering to the “norms”, and what others thought of my actions. Sean has taught me a lot about the fact that normal is different for all of us and if we are truly honest with ourselves, there is no normal. We all come with our own quirks and personality traits that others may find a little off, but so what! Everybody has them.

I would like to think that I’ve become a pretty good advocate for my child. He struggles with the traditional learning environment and each new teacher is yet another person whom we need to “break in”, so to speak. Most teachers are wonderful men and women, willing to learn and keep an open mind. Thank goodness for that because it is hard to stand up for your child and fight battles that you never knew would need to be fought. So far, I’ve been very lucky with only a few bumps in the road. Those bumps have taught me the value of awareness, though. It amazes me that there is still so much that society does not know or refuses to acknowledge about the autism spectrum. After all, he looks normal.

Finally, I’ve learned that the world is harsh but, we can rise above it. A couple of years ago you may remember that there was this big “to do” about Disneyland changing its policies regarding helping families with a disabled individual avoid the long wait times. These wait times can be particularly upsetting for some individuals based on their sensory and societal issues. I read an article where a gentleman had commented that he was sick and tired of seeing all of these families walk around feeling as if they were entitled to something special. I just had to shake my head because I’ll tell you what, the last thing … the very last thing … I felt when Sean was diagnosed was entitled or privileged.

I mean seriously … My first inclination was to drive around town with a loud speaker announcing that I was now able to skip lines at Disneyland!

Sounds ridiculous, because it is ridiculous! I assure you this was the furthest thing from my mind. What I did do was sit in my car and cry for half an hour before I could even turn it on let alone drive away.

It was heart rending.

All I could think of were the things that Sean might miss out on because of his situation. Keep in mind that at the time he would only eat two foods, had frequent meltdowns because of his sensory issues, and never played on playgrounds because his proprioceptive abilities are affected by Asperger’s. (Bet you didn’t know about that one, they are typically clumsy and that is why …  Sean was scared half to death by the holes in the grates of the playground walkways.)

What I have never felt was entitled.

Thankfully, we have come a long, long way from those early days. I would like to say that, for the record, I still do not feel entitled but I do feel privileged. It is a privilege, an honor really, to be his mother. I am fairly certain that most days, if not every day, I fail him in some fashion or another; however, I am gladly willing to give him and Alex my best no matter the sacrifice. Even if it means I look down right ridiculous in public.

My grateful for today and, every day, is the opportunity to be a mother. I am indeed honored to be a part of the autism family. I wouldn’t trade the experiences I’ve had learning and growing with Sean for anything.



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