For Real...

My three-year-old son received an official diagnosis of Autism Spectrum Disorder yesterday. 

This did not come as a surprise to anyone. It's something we have been suspecting, assuming, and working under the premise of for at least two years. 

So when I say he received an official diagnosis, all I really mean is that THIS is now a part of my ever-growing file. 

There is absolutely nothing new. In fact, the things we have been dealing with with him, we have really been dealing with for an entire decade because he is the mini-me of his oldest brother, and in many ways, actually less challenging. 

BUT, the weight of the report in my hand... those codes... those words.... "Requiring substantial support...."  Yes. It's real now. 

I will be honest, there are times I have felt like a bit of an intruder in the autism community. Yes, we have challenges,  but so many others have bigger ones. It was hard in the beginning, for me to even accept services from Infants and Toddlers for my son without feeling a little guilty, because most people are quick to say he looks "fine". They don't understand why we have even pursued any of it. It often takes me having the same conversations with his service providers over and over again to just to give me the strength, words, and motivation to keep fighting against the current of people who just do not understand why I worry. 

The psychologist yesterday asked me at the end of the meeting what I was thinking and I told her all of that. Her reply has stayed with me since yesterday.  She reminded me that it's all relative.  I see the struggles of other children and their parents and to me it looks ten times harder than what I deal with; but that doesn't make our struggles any less real.... that other parents with typical children are seeing what we have to do every day and it looks no less challenging. 

And all the way home, I thought about that. I thought of all the ways ASD has affected our lives without us even thinking about it. We have spent ten years accommodating and changing plans and walking on eggshells with two different children.  We've navigated countless meltdowns, sensory issues, and fears. We are always the people at the party with a child who is upset for a reason no one understands. We've had our parenting judged because we have picky eaters, or because our children don't always know how to answer questions, and can't always carry on a two-way conversation, or think to say hello and goodbye. When we make plans, we always have to consider if something will set someone off or if we can manage an event with lots of people. We have foregone more activities than I can even count for the sake of our kids who just can't handle certain things. The list goes on and on. 

And you know what? I've never given it much of a second thought. It's not always easy, but it's just how it is and how it has always been. We don't know what it's like to live any differently. When I add it all up like that though... well, it sounds like an exhausting way to live....

....so I guess it really is all relative.

Anyway, so I started this blog because I have learned so much the last couple years on our journey.... so much I want to share with others about my kids and kids like them.

I see so many people who do NOT GET what high-functioning autism means and it frustrates me. There are so many kids I see who remind me of my own and could benefit from early intervention, parents who think there might be something wrong but don't seek help because people who SHOULD know tell them their kids are "fine" and make them feel silly for worrying. I want people to understand that even when there isn't "intellectual impairment", as with my sons, the social (and other) struggles with high-functioning ASD are VERY, VERY real and just as hard to deal with as a parent.

I'm not really sure where this road is leading, but I hope I can help educate in some small way by sharing our stories....