The Hardest Part for Me
Here is one of the most real, deflating, and crazy-making parts of my journey with my different-brained son. And know our journey started from the VERY beginning; Michael came out with a different brain from day one. I’m sure it is the norm to receive unsolicited parenting advice. I’m guessing every new mom gets strong suggestions on what they are doing wrong, right, and what they will look forward to and on and on the chatting will go. However, this whole thing with a different brainer—well, it just gets hairy and sludgy, even with the best intentioned person.
Michael’s diagnosis includes OCD, sensory integration, Asperger’s (but that’s replaced here with Different Brain), and some slight impulse issues. He takes an SSRI, a commonly used antidepressant, and without that, life plummets. This story is about a trip he takes without me. He goes to visit other people some time ago (vague is intentional) and Michael comes back completely tangled. Tangled means irritable, crying, having outbursts, being unkind, and miserable. It’s a sad state of affairs when he’s tangled inside. L And so we wait. Because the tangle wants to untangle, and it will come out when the time is right. The time became right and what I heard was shocking. It was sad. It felt uneducated. It created a fury in me (the kind a Mama Bear feels when her cub is in danger I imagine). My son was told that he doesn’t have OCD. He was told that he could learn to not have OCD. And he was told that the way I speak to him makes him have OCD. This is the essence of what I remember Michael telling me about this incident. No, I am not kidding. I sure wish that I was because, dear reader, THIS is the hardest part of the different-brained journey in my opinion.
As humans we identify with other people. But our perceived identity can be threatened if people are different. Michael looks like your typical ten-year-old boy . . . kinda. He’s beautiful with his long brown hair falling down to the center of his back. But when he is screaming about not being able to drink a glass of water because someone touched the outside first, people don’t know how to respond. I assure you, you are in relationship with his limbic system at that moment. It’s going to take some tools from our brain toolkit to get him out of his OCD brain stuckness. Good luck is what I tell people. Seriously, it’s gonna take some time and some gentle talking and love. But “teaching” him to drink the water because he doesn’t really have OCD—not so much. After he finished telling me the entire story and he cried and I probably cried, too, here are a few things I made sure he knew:
I told Michael about people and the good intentions they have (mostly).
I told him that it’s perfectly OK to be who he is.
I explained that other people need to be managed, and some simply will never fully understand everything about him.
And I explained how I didn’t agree with how his glass of water incident was handled and I wish it had been different.
I have not always been so calm, cool, and collected with my responses of people who criticize Michael and tell him he needs to learn to behave or be a different way. It’s taken ten years, a second child, one divorce, six schools, three therapists, 100 mg daily, and a whole lotta livin’ to get to where I am today. I trust that Michael will one day be able to kindly, respectfully, and powerfully stand up for himself. Right now, though, I am his mother, and I assure you, I will stand in front of him when needed. I am his advocate, his protector, his champion, and his care giver. ROAR!
Major lesson I see here: We have NO IDEA where people and their children are coming from. We need to turn any judgment we may feel into compassion. Humanity thanks us in advance.
HELP! It Fell Down and We Can’t Get Up!
We have a therapeutic swing hanging in the boys’ bedroom (well, usually anyway). It’s totally awesome and the kids love it. It’s been up for probably two years now. When Michael was going to an occupational therapist, he requested to be in the “bag swing” the entire session. She had to cajole him to do other things, but they always came back to the bag swing (it’s a bag swing like this: http://www.laceandfabric.com/Autistic-Products-Body-Sock-Body-Bag-Silly-Sacks-Swings_c16.htm) time and again. It looks like they are still selling them. Awesome.
As you may or may not know, therapy and medications and private schools are all very pricey. Being the genius that I am, I purchased a bag swing for my own home. Oh. MY . GOOD. GRACIOUS. GAMMY. GOO. The first night he went into the swing, it felt like he had taken some awesome drug to settle him instantly. It was CraZy. Truly, my mind had difficulty grasping the calm that instantly came over Michael after just a few minutes in the swing. I remember he even noticed it. It was a good thing; that’s what we all knew.
Well, about one week ago as Michael was swinging in the swing, BLAMMO! He fell plumb from the sky and crashed on the floor with a big, big thud. He was totally fine, and I called the guy who hung the swing the next day and asked in my calmest desperation, “When is your first available time to help us rehang the swing?”
Our handyman was able to come out the next morning as luck would have it, and the swing swung again. The part that failed after two years, you ask? The steel rod broke clear in half! When I went to get the replacement part, the guy at the hardware store said he’d never seen anything like it before. We got the “high-class” one this time that was a bit more expensive, but totally worth it. It swung again, until it didn’t. Two nights later. Said repair man cursed a bit and came back out. He needed another part, but “it should work for a few more days.” Thwonk! This time it was Mason that fell from the sky, and he fell hard. 🙁 Big hip ouchy for him.
It’s been two days and the handyman has a new plan and a new part, but he can’t come out until early next week. I know we’ll make it, but it’s a big honkin’ bummer that the calm-inducing swing is out of service until then.
Sending in love and in the hopes of ending the feeling of isolation while living with a different brain, whether yours, your child’s, or someone else’s.
