Living With Autism Blogs Show the Gradual Progress of Recovery
“What we commonly call man–the eating, drinking, planting, counting man, does not–as we know him-represent himself, but misrepresents himself. Him we do not respect. But the soul, whose organ he is, would he let it appear through his action would make our knees bend. When it breathes through his in-intellect, it is genius. When it breathes through his will, it is virtue. When it flows through his affection, it is love.” Walt Whitman
1. Understanding My Son: “Self-Advocating”
I’ve been quiet because school is going well and I’ve been afraid to jinx it. I’m doing my best to live in the moment but still don’t have the guts to brag about the good times, the best I can do is quiet enjoyment. There have been some issues but they’re the kind of issues we had during the calm times last year, not at all what I’d expect from the dreaded first month of school. However, these issues have frustrated some of G’s classmates and are starting to impact his ability to befriend these students. His teacher suggested to G that he share the snapshot that we provide the adults that will come into contact with G with his class during the Friday class meeting. G was enthusiastic about the idea. I am terrified.
I guess I should say I’m more anxious than terrified. I think it is fantastic that G is secure enough in his identity as a person with Asperger Syndrome and is comfortable with opening himself up to his peers. I think this means we’ve been successful as parents in our quest to make AS just another characteristic that makes a person special, like a talent for music or left-handedness. Still, I worry about what the other kids will think. I worry they’ll twist the information and use it to taunt G on the playground or label him with the dreaded R-word. But I need to have faith. G’s teacher has a solid special-ed background and I trust her to know how to handle her class. The school psychologist that I adore will be present. I’ve dug out our go-to books on the subject, “Can I Tell You About Asperger Syndrome,” and “Different Like Me, My Book of Autism Heroes.”
Even with all my worries, I have to say I’m bursting with pride. This is G’s first experience advocating for himself. It’s what I’ve always wanted for him, to be able to take control of his autism and his life. I guess I just didn’t expect it at 7 years old. He never fails to amaze me.
2. Jump on the Rollercoaster: “A Crash Course in Kid…
“Along with having a nasty, chesty bug that just won’t go away, Billy’s been on an odd kind of rollercoaster – an emotional one. It’s up and down, one minute sadder than ever, next minute really happy, next minute saying really troubling things like, ‘No-one thinks I’m any good at anything…’ and slouching off to another room (where is is suddenly, magically giggling again).”
“Catastrophiser that I am, I’ve been googling anxiety in autism, looking back at the old text books, looking everywhere for ways to handle this new challenge. I’ve been trying to focus myself, telling myself anxiety disorders are common in people on the spectrum. It’s cool. There are heaps of great books about it. It’s not new ground, we can handle this.”
“I’ve been reading about biomedical and therapeutic interventions. I read this awesome book called Shut Up About Your Perfect Kid, about two sisters with SN kids – one with autism, and another with pediatric bipolar disorder… just incase we were heading toward something really, mega-rollercoaster-y.”
“And still, we would have moments, often when Billy was at his computer where he would stop, sigh and say, ‘I’m genuinely not so good at anything at all…”
“Billy’s language development is an ongoing game, and lots of phrases creep in from external sources. So, I started looking sideways at the other kids at school, wondering if there had been conversations about Billy’s deficits while he was close by. Not that there’s anything wrong with that, seriously. We’d all rather the conversations are open and honest. Billy’s well able to advocate for himself, and an questions that are too hard for him will always be brought to us anyway. Hippy school kids have a tendency to overturn every stone they see.”
“I didn’t hear anything (and no short person collared me with questions about different brains or funny wiring) so… I relaxed my Mummy Eagle Eyes at school and resigned myself to the fact that approaching tween-dom was bring with it the hormones of doom.”
3. The Gift: A Blog for Caregivers of Sensational Children: “Transitional Tuesdays: “SPD from My Perspective-An Interview With My Jaimie”
MAMA: Oh no. Well, maybe you needed some things to make your body feel safe so that your feet would have remembered to stop. What makes your body feel safe, Jaimie? So, when your body feels scared what helps it feel better or ‘safe’?
JAIMIE: Usually I just like to sit down on my spot on the couch with my pillow on top of me and I snuggle with Lamby (Mama’s note: ‘Lamby’ is a weighted stuffed Lamb that we can heat up). He’s really soft and he gets warm.
MAMA: So ‘heavy’ and ‘warm’ makes your body feel safe. What else helps? Do you do things with Mommy that makes you feel better?
JAIMIE: Yeah! I like music. I like to dance. And I like squishy massages.
MAMA: Me too! What kinds of music do you like?
JAIMIE: Beatles music is my favorite. I like Ringo and John.
MAMA: They are my favorites too. What ‘hurts’ your body?
JAIMIE: Sometimes when people touch me it really hurts. Like one of my classmates touches me or play pushes me and it really hurts. Or last year, a girl liked touching my hair and I just hated that. Maddie told her not to touch me or my hair. And I don’t like it when people don’t follow the ‘my space’ rules. That makes me mad.
MAMA: Me too, Jaimie. Now one thing I thought was really neat was that you knew that Xander had SPD before anybody else. How did you know that?
JAIMIE: I’m not so sure but he was just acting strange and getting mad about stuff and yelling when things were loud and stuff. Kinda like I did when I was a kid.
MAMA: You’re so smart! Okay, let’s have one more question. Are you ready?
MAMA: What are things you want people to understand about Jaimie when it comes to her and SPD?
JAIMIE: I want them to understand my SPD. Like once with my swimming teacher…he didn’t understand that I was trying really, really hard to do stuff but he kept telling me I wasn’t trying and made me keep going even when I was tired and I couldn’t do it anymore! He made me and Jordy cry! He said that I had to move my arms and legs and everything and I tried but they weren’t moving the way he said was the ‘right’ way. I wanted him to understand that I do try and that what I was doing wasn’t wrong. It was just what my arms and legs could do. That’s all.
MAMA: I like that answer, Jaimie. So, what do you want people to understand about you the most?
JAIMIE: Uhm…that I have SPD and that they should not be too hard on me and be okay when I’m brave enough to try and to like me just for who I am.
Thank you, Jaimie. I love you just for who you are and I always will. Tomorrow we’ll have an interview with Jordy on what it’s like being a sister in a ‘sensational’ family and learn what’s awesome about her.