Tuesday, July 8, 2014

The Social Side of Special Needs.

We live as a society. By sheer definition we must be social, to some extent, to maintain our very lives within this world - especially in a society like America.

For the most part, this very concept is buried so deeply within the nature of how we are brought up from the moment we breathe our first breaths, that it is something most take for granted - this ability to be social - even just on a foundational level.

Do you think about it? Do you even give any thought to how you will function today within the myriad of situations you will encounter, whether it be school, a job, a doctor appointment, a grocery trip, or lunch with a friend?

This society that we live in is far from perfect, but we have made strides in recognizing disabilities and those who suffer from them. There is much work to be done, many eyes and minds to be opened; but we have come a long way. There are adaptive devices for the deaf and blind. There are accommodations for those bound to wheelchairs. Society is recognizing and answering the call for those with obvious disabilities. They clearly need help.

However, those suffering from issues that are debilitating on the very ground floor of how we are to function as humans - socially - are largely ignored. And even worse, not recognized as suffering from any real disability at all.

I have two children on the Autism spectrum - two high-functioning sons who are where they are today because of years and years of hard therapeutic work. But they will never function socially in society like most. No amount of therapy will grow them new, neurotypical brains. It will be a daily struggle that cannot be cured or fixed. Every day. For the rest of their lives.

Just as someone who will be paralyzed for the rest of his life will never run up the front steps of a building if he is late for a meeting, my sons will never hear of an upcoming event at church or be invited to a cookout or school function and just . . . go - no matter how much their hearts long to be able to be a part of things. Because you cannot simply will yourself to be able to do something that other parts of your self deem you unable to do. A blind man, no matter how badly he wants to, cannot make himself see.

Now imagine, if you will, raising a family with this type of dysfunction within it. The simplest of things that other families take for granted are things that we long for. Friend get-togethers. Attending events as a family. Volunteering together. Even worshiping as a family is no longer an option. We are able to get together with friends who live next door frequently, but why? Simple - the boys usually don't join in. Even those they once were comfortable spending time with are falling by the wayside. As they grow older and social cues are more and more important and peer relationships are harder and harder, their area of comfort becomes smaller and smaller.

Meaning? The more social life gets, the more problems they have and the more isolated they become. And the more isolated we become as a family - which is why special-needs parenting is so very lonely; and special-needs parenting of children with "invisible" disabilities is even worse.

There are sometimes surprising leaps in the right direction by one son or the other, but figuring out the circumstances under which this particular social situation was something they could handle is about as easy as putting together a 12-million piece puzzle. Blindfolded.

Watching others' children of the same ages as yours without these types of issues blossom and be able to have experiences that will grow them in amazing ways is difficult to say the least. Taking my boys to Walmart some days ends with me near tears and them out of sorts for hours. Yes, hours. So you can imagine how going on an amazing mission trip or youth group outing is pretty much out of the question. This breaks my heart because they have so much to give. They are amazing boys with such beautiful hearts that go unseen and unheard by most because they do not fit into the mold - and there is no one building special ramps to help them navigate the situations.

And when I cannot make someone who sees them every day try and learn and understand their pain and how hard they work, how can I possibly do that with those who are not family? To say it all feels unfair is the understatement of the century. 

When others are talking about this accomplishment and that great experience of their children, I am just trying to get one son to please consider coming to the church we've been members of for eight years and get the other son to please not start to panic about school starting a month from now.

So the next time you wonder what is up with so-and-so whose child has some sort of thing you never really understood going on ("Just make him mind and quit coddling him, for crying out loud ..."), please know that trying to simply hold our families together is largely the goal of special-needs parents much of the time.