Monday, August 26, 2013
As I watched my two younger boys march out the door this morning, this mama prayed a prayer similar to others I've whispered thousands of times for them - for acceptance, for the ability to process their surroundings and emotions and react well, for simple friendship, for them to be able to connect with someone today and laugh. This is the prayer of a mother with children on the Autism Spectrum.
More precisely - children who are in the desert area of Autism - those who have overcome Autism Spectrum Disorders just enough to fall into the abyss of "out of sight/out of mind". And it is silent but deadly territory.
They do not flap their hands or bring attention to themselves in those obvious autistic ways. People do not look at them and instantly see that a deeper compassion and understanding is needed. They can even fly under the radar of teachers, who have IEPs in their hands chock full of information about the child they have in front of them.
They do not hit other children, or scream out in emotional tantrums in public anymore. They are doing "so well!" by outward, obvious standards. They function, they engage in some normal, age-appropriate activities. They. Don't. Stand. Out.
But you often don't see them or their parents at any of the local kids' sports league activities. They may have tried at some point, realizing that it was too much. You probably don't see them at extra-curricular activities because just getting through the day can be taxing enough (and can take the entire evening to even out from). All of the "on the outside I'm just one of you, but on the inside I work twice as hard to regulate what's going on" is exhausting. It literally is.
Evenings and weekends can be some of the toughest, most emotionally-draining times for these families because of this exhaustion. This is when these kids are among those who will love them no matter what. This is when they unload in order to be able to face the next day, week, month, lifetime of being on the silently deadly part of the Autism Spectrum.
The challenges these kids face are just as monumental - and crippling - as those whose issues are outwardly obvious. We spend just as much time and money and emotional and mental energy on therapies, programs, doctors, specialists, etc., on our children as those who have much more visible physical and mental disabilities, yet we are mostly left behind.
As parents, we do everything we possibly can to help our children overcome this disability every waking moment of every day - including trying to find people outside of our family to be parts of their lives so that they feel understood and accepted by others who choose to engage with them. Because believe it or not, they are awesome human beings with hearts that are amazing.
My heart breaks thinking of the people who have at one time or another taken the time to do just that only to drop out of their lives for one reason or another. These people have no idea the devastating effects this has on an emotionally fragile person already questioning daily why God made them so different on the inside.
There is no one waiting at the church door to take kids on the "silent spectrum" under their wing so these exhausted, on-the-edge-of-tears parents can sit for an hour and listen to a sermon; because outwardly, their kids just seem like weird pains in the butt who don't want to engage with kids their own age - not emotionally charged children who have an incredibly hard time sitting down with other kids and just talking.
There is no one always ready to help you because every time they see your child they are reminded of their disability and what you must endure in everyday life.
No, we just seem like average people who can't handle the rigors of everyday parenting and working and life. Because as parents of these children who are silently suffering, we are silently suffering as well. And the isolation is crushing.
Why, you wonder, don't we be more vocal? Ask for more help? Make our situations known?
Well, have you ever been around that "Hey, what about me?!" person? The look-at-me, look-at-me person? The one who always seems to have something wrong to ask for prayers about, needs help resolving, can't handle ... Exactly. That's why.
And on some delusional level, we just wish the people who "know" us best really did know us. But at best, we are stressed-out working parents with kids who always seem to have some kind of crappy issue going on that needs dealing with - and who wants to be part of that? I don't even want to be a part of that. Friends have been lost along the way because even though you've tried to explain how difficult the life is, when you drop off the face of the earth when things become too overwhelming - no one comes looking for you.
So we silently suffer among ourselves and the people we pay our last dime in savings to in the hope that they can try and help us. And yes, I mean us. Because if one or more people in your family is on the Autism Spectrum, you are all on the spectrum. It attacks and attaches itself to every fiber of your family and every member suffers from its effects. And it is a roller coaster ride that you know you'll never get off of, but wish it would break down so you can just have five minutes of peace before it starts up again.
There needs to be more awareness for this part of the Autism Spectrum in addition to Autism in general. We've gotten the public to somewhat understand what these parents are going through with their screaming, non-verbal kids (which one of mine started out as), now how about a movement to understand there is a whole group of people on this largely unrecognized area of the Spectrum where many kids wind up suffering alone, misjudged and outcast.
It really does take a village to raise children, but the system breaks down when your family speaks a different language than everyone else in the village.
photo by sanja gjenero