Thursday, September 12, 2013

We Are Family

Let me warn you...this might be a bit rambly, and I don't really even know where it's going or if I have a point. Just want to put some thoughts and feelings out in the universe.

I think it was about a week ago when I came across this story about a mother of an autistic teenager who tried to kill both herself and her child. It was heartbreaking...and I didn't understand it completely. Fast-forward to two days ago, when I came across this post on a blog that I regularly read.  When I read this one, I realized that I had read one of the original posts by the mom who took the drastic measure of trying to end both her life and that of her daughter. I was completely covered in goosebumps when  I realized that I'd read a piece written by her can find it here, and if you fall into the group of people who was totally appalled by the actions of this woman a week ago, this is worth a read.  This is a woman who was at the absolute end of her rope, who had begged for help from the internet world, from her community, her government---and everyone failed her. It is horrifying. Heartbreaking. And above all, completely terrifying.

 I'm not going to get into my beliefs on the case--I don't mind posting some controversial things, but this one is just too near to my heart to risk getting any kind of criticism. I have VERY thick skin, but when it comes to all things related to my children, all bets are off.  I share the story only as a lead in to my thoughts tonight. Tonight, I'm thinking about the autism community--or, honestly, the autism family.

I have exactly three "friends" (and they are truly friends, but I rarely see them in real life; they're internet/Facebook friends) who have children on the spectrum. Three. Now, if you're into numbers, that's about right. If 1:55 is on the spectrum, then about three of my friends SHOULD have children on the spectrum. Still...three is a pretty lonely number.  And yet...within those three people, I feel a sense of community and belonging that is so strong, and so comforting.  I know that if I need to vent something, I can send a quick message and get feedback from someone who knows what it's like. They, in turn, feel the same way (I like to think).  Because there is definitely safety and comfort in numbers, and we all want to connect with someone who "understands".  We are members of a tough, tough community--the people we love the most in the world have a condition that often causes mental and physical anguish. Mamas truly feel the actual pain of their children, and watching a child with ASD struggle--be it with sensory issues, obsessions/fixations, stims, irrational phobias, speech--has to be one of the most difficult things for a mama heart to handle. When you add into the equation physical aggression, like in the story above, get an indescribable situation.

Reading blogs helps me connect, helps me feel normal. I've never met, or even conversed with, the moms who write the blogs I read. And yet, I feel connected to them because I know about their everyday struggles with kids on the spectrum, with other special needs. Sadly, it's soothing to read about an ASD child who struggles with bedtime routine--because it makes my life a bit more normal.

One of my three friends had a difficult day today. When you add that to all of my recent thoughts on the subject, my ASD family is heavy on my heart today.  Anderson is in a relatively "good" period right now (he goes through spells, much like growth spurts or developmental spurts) where things are pretty good, but I know it won't last forever, and I feel the pain of all the other mamas out there just trying to figure it all out and keep it together.  I hurt for them, too--but I'm glad they're part of my family.

If you have any friends who have children on the spectrum, I would love to connect with them. Please feel free to share my blog on Facebook, via email, etc., ANYTIME. If my crazy stories can provide the kind of comfort that I get from other blogs myself, I will feel like I'm bringing some positive into a precarious situation that is life with a special needs kiddo.

So, tonight, I'm spreading light and love into the universe. Send some with me, friends.

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