This post was originally posted by Jenny Saul-Avila on Minute to Minute Mommy at http://minutetominutemommy.wordpress.com/2013/05/01/minute-to-minute-mommy-celebrates-1000-ausome-things-autismpositivity2013/, and is reprinted here with permission from the author.
‘Things are not always what they seem in this place. So, you can’t take anything for granted.” – The Worm, Labyrinth
I’m not going to sugar coat everything and I am not always going to be politically correct. Before moving forward in this post, I will say that for me, having an Autistic child can be a real roller coaster – with extreme highs and lows and everything in between.
But there’s one huge and awesome thing that Autism has taught me – never take anything for granted. And I will say now that not taking so much for granted is a GOOD thing. In fact, at this point in my family’s life, in my own opinion, it’s the best thing about Autism.
Prior to Nathaniel being born, I had some loose, vague ideas of how I envisioned his infancy, toddler-hood and childhood, etc. I thought about holiday traditions and playing in fall leaves, picking dandelions, sledding in snow, stuff like that. I don’t have a long history of many babies or young children in my life, so I didn’t think I had any real firm idea of how I wanted it all to be.
Until I watched, mostly via Facebook, how other people’s children, born around the same time as my own, grew along a different path. I saw the things they did as families, the places they went, the things they experienced that seemed so different from my little family. I never knew much about early childhood development; I just assumed my child would develop along pretty much the same path as others’.
But I’ve gained some perspective, through my own experience and through reading the experiences of others who have children with special needs and through reading the writing of those with Autism, Cerebral Palsy, intellectual disabilities and physical disabilities. I have really come to realize that NOBODY knows how their child is going to develop or how their life will play out. Whatever notions we might have about our futures, about our children’s futures, about our friends’ and other family members’ futures – it’s all up in the air. My little family’s life is always evolving and changing. I have absolutely no idea what the next month will hold, let alone the next year or two or 10. Yeah, it’d be nice to have a crystal ball at times to save oneself a bit of anxiety, but none of us have that. I don’t think I fully appreciated that before.
The ability to communicate has been one of the biggest things I no longer take for granted. Nathaniel started talking, albeit in one syllable approximations, late last spring/early last summer, when he was a little over 2 years old, after not having a single word and only having a slight grasp of using two different signs, “more” and “all done.” He could point, but it was sort of vague (his pointing when he wants something across the room is still not the best – I think he doesn’t realize that my line of sight isn’t identical to his). He was frustrated and often unhappy and on edge, as were we, because we could not understand him and we wanted so desperately to understand. But once we began to learn more about his delays, about his diagnosis, we found therapists who could help. Then, on the way to talking, he quickly learned how to use a picture exchange book, which helped lessen some of the frustration he was having & that was also our frustration, in wanting to help. Now, he has more words than I could begin to count, he can say “more” and “all done,” he is speaking in sentences and except when he’s flustered or not feeling well, he can do a decent job of getting across to us what he needs and wants – his words can be hard to understand at times, but we’re getting there. And he can understand us better, as his vocabulary expands. He understands not to touch certain things, because they’re hot, so now he can be in the kitchen when we cook or bake. He knows what it means to be “cold,” or “comfortable.” To some, this may seem like no big deal – but to me, it’s all completely awesome. Every word he says I know took a lot of learning and growing. I am on the way to “getting” that the ability to communicate, through any means, is not something to take for granted.
There is so much that Nathaniel can do now that he couldn’t do before that has taught me so much. He’s starting to walk up & down steps instead of crawling. Lately, he will alternate feet on a couple steps, instead of putting both feet on one step before going to the next one. He still puts his hands down most of the time, but he doesn’t have to. He can jump forward. Not that long ago, he couldn’t jump in place. He gallops, bear crawls, slinks like a snake, goes up and down a sliding board by himself, is getting comfortable on a platform swing after a long period of not wanting to get on any swing. All of these things are probably no big deal to some – but to me, AMAZING. Every time I see him do these things, I am thrilled. It just doesn’t get old.
And all this progress is not about assimilation. I don’t need for Nathaniel to be “like everyone else.” But I want him to be comfortable, happy, confident and with less anxiety. I don’t take his happiness for granted. I don’t take his comfort for granted. When I see him happy, when I see that he is feeling more comfortable in situations that were hard before, more confident with his own physical movement, I am all the happier. The smile on a child is a beautiful, awesome thing. And my son’s Autism has made me more aware of the importance of another person’s happiness.
That’s pretty awesome…or ausome.