I never really thought I'd have to embrace autism more than twice--that is, after I realized I would have to do it once, and then twice. I was pretty sure I was done.
I have two boys with autism and I thought when I went through the acceptance stage of that years ago, that that was it. I was done. I thought of it like something that I already "went through" and now I am through: I'm on the other side. As a matter of fact, that experience is partly why this blog was born.
But it turns out that the "embracing" part of embracing autism isn't something that is ever finished. Embracing is a present active participle that requires continual action. It is never "done".
The realization of that comes as I find myself embracing autism, again.
As I learn more about what autism means in my boys, what their strengths are, what they have accomplished, I also have learned more about the severity of the deficits, especially in my 8 year old.
The rigid thinking, lack of cognitive flexibility, and hyperactive emotional and sensory system has led to severe bouts of explosive meltdowns.
I wasn't really counting on that in my child. I didn't expect to be reading books with titles like, "The Explosive Child". I didn't expect these explosions to continue to happen as he has gotten older. But not only has it continued to happen, it seems to have increased in severity. That really was not a part of my plan. Not at all.
I have a large basket full of unopened notices from the school, recording seclusions and restraints that my son required in order to stay safe. I also have a stack of opened notices, and in addition, a chunk of notices that are filed away (back when I could keep on top of it). Until recently, it was a daily event--sometimes multiple times a day, that he had an aggressive meltdown. We receive notices for each event, plus a phone call each day there's a seclusion or restraint.
To be honest with you, I just couldn't keep reading about these never-ending incidents. It's like begin stuck in a horror movie, replaying the scene that was most traumatic-- except this time, it isn't the same scene...it's a new horrible scene each day, every day, over and over. I just needed a break from reading about it AND hearing about it every day.
Mounding up beside all the school notices, are all the meltdowns that occur outside of school that have no papers attached to them to make them officially "count". No record of the number of times he had a meltdown attack at church, or in the car, or at the doctors office, etc. There is no record of all the extra visits we have made to the developmental pediatrician to discuss ways to help him and keep us all safe.
But all those things do count. Each one carries a weight that presses on our hearts as we try to help him. Each one impacts the 3 other children in our family of 6.
All of us have to endure the screaming and aggression when Stevie is attacked. I put it that way, because it does seem to attack him as much as he attacks us considering the terrified look on his face, the turmoil in his screams. I'm sure he is as much afraid of his out-of-control-ness as we are. My mommy's heart wants to hold him and comfort him but his body won't let me near. And I fear what would happen if I tried.
Six years ago, when I said "ok" to God and his plan for Stevie to have autism...well, I didn't mean this!
As Beth Moore says in Whispers of Hope, "God wants us to surrender to His will, but we tend to want a blueprint of His plans so we can decide whether or not to surrender." page 5.
It looks like I am guilty. I surrendered to his will with conditions I didn't realize I had. "If I knew this, I wouldn't have decided to surrender." is in effect, what I have been contemplating.
So lately I have been re-evaluating this autism thing, and the truth is:
♥ I have what (and who) God gave me and I can choose to believe His promises for Stevie: he is a blessing and a gift from the Lord, a masterpiece, he has an important purpose, and work to complete.
♥ I wouldn't want to deal with any of this without God.
♥ I believe that God is good, and nothing passes by Him that He doesn't allow with good reasons and a great redemptive plan.
♥ I believe that God has a plan in this for Stevie.
♥ I believe God has a plan in this for us as a family.
♥ And I believe that His plans are good, even if I can't see how right now.
So now that I've had my expectations adjusted and my paradigm shifted, I choose to embrace autism, again.
And I will intentionally be embracing autism on a regular, daily, present-active-participle kind of way as I trust the God who made him.
"For you created Stevie's inmost being; you knit him together in my womb. I praise you for he is fearfully and wonderfully made; your works are wonderful, I know that full well. Stevie's frame was not hidden from you when he was made in the secret place, when he was woven together in the depths of the earth. Your eyes saw his unformed body; all the days ordained for him were written in your book before one of them came to be. How precious to me are your thoughts about him, God! How vast the sum of them! Were I to count them, they would outnumber the grains of sand." adapted from Psalm 139: 13-18
To read the initial 3-part series, I Found Myself Embracing Autism click here. Or, click on "Embracing Autism" in the Treasury (on the left side bar) for a list of all posts on this topic.