I won’t lie, the kids being out of school the last couple of
weeks has been a relief. For me as much
as for them, of that I am sure. Two
weeks of NOT thinking about assessments, modifications, IEPs, classroom
consequences…two weeks of NOT watching my phone, just to see the school’s
number pop up on my screen. A couple of
months ago I began soaking up any and all things Autism, ASD, Asperger’s that I
could get my hands on. Blogs, Facebook
pages, articles…you name it, I was reading it.
I was empathizing. I was
inheriting the fear and frustration of others.
I didn’t realize the emotional toll it was taking on me at first but
eventually I had to back off. I had to
clear my mind. I had to breathe. While I’m so very thankful for the
connections and resources I’ve built and gathered as of late, I realize it was
dominating my thoughts, my world.
When the kids walked in the door on the afternoon of the
last day of school I took that as my cue to rest. Nothing is critical. This isn’t going away. It will all be there when I open my eyes
tomorrow. But can I figuratively walk
away for a little while? Just pretend
that there is no such thing as Asperger’s for a week or two…or four? Imagine that next school-year is a
non-issue? I didn’t wait for myself to
answer. I took that mental break. And it felt good.
During the last few weeks of school, I was fortunate to be
referred to an Autism sports camp in my area by a good friend. I was thrilled…an opportunity to potentially
introduce Ben to other kids who might just “get” him. No one
saying he’s weird. Or a freak. A place where he can just be Ben…not Libby’s
little brother who requires her protection.
Or Timmy’s younger brother who is constantly getting into his
stuff. Just Ben. We registered and awaited confirmation that
he would indeed be allowed to participate.
I was thrilled to discover that Ben was in but would need to attend an
assessment session with the other campers to determine what and how many
resources they may need to administer the camp.
Great! We’ll be there!
Weeks had passed and I was well into my mental “break”, my
Asperger’s time-out, before his assessment rolled around. The bright red beacon that is my calendar
reminder acted as smelling salts beneath my nose. Yep…it’s time to start thinking about it
again. No more pretending. It was nice while it lasted. I wouldn’t say it caused anxiety, rather I
did feel some sense of progression, movement, maybe I’ll actually feel like
we’re getting somewhere. We both need
this. We were scheduled to meet with the
group Saturday afternoon…given the heat and the length of the session we opted
to split kid duty and allow Lib and Timmy to stay home with the Gentleman. I was on Ben-duty. Works for me…I readily admit I require being
the one in control of all things “Ben”.
Not necessarily healthy, but it’s a fact.
We arrived at the house, pulled in to park and were
pleasantly greeted at the door by a wonderful young lady. The home appeared to be set up as a
daycare/therapy facility. We signed in,
Ben chose his nametag and was escorted outside with the other children as I
completed our paperwork. My anxiety
skyrocketed and I could feel the muscles in my hand weaken as he left my
sight. My “what if’s” were abound and I
couldn’t sign my name fast enough to follow him out. I was advised I could either sit inside and
watch him through the picture-window, or I could join some of the other parents
outside to watch from the patio. Social
anxiety could kiss my ass on this one.
I’m sitting outside WITH the moms.
And they’re going to talk to me.
I had no idea what to expect when I walked out to the
yard. I think a part of me considered
and maybe hoped in some twisted way that the leader would suggest that Ben
isn’t quite “Asperger’s” enough to participate in this camp. When you go through years of not knowing what
is going on with your child, and are faced with others’ assumptions that you’re
just parenting wrong, or he’s oppositional, or he just needs medication…you
can’t help but imagine that maybe, just maybe this is in your head. For that split second before my butt hit the
chair, and my eyes set on the kids, I thought “what if he doesn’t have
Asperger’s?”
And then I watched.
And watched some more. After a
kind but perfunctory introduction by one of the other moms I sat
silently…monitoring his every move. Of
the twelve or so children participating in the assessment he was one of the
least social of them all. He didn’t
speak to anyone. He didn’t initiate
play. He didn’t engage. Not one bit.
He melted down at one point because of his name tag and the heat. Thanks to one of the wonderful ladies leading
the session he regrouped and joined in on the activity. Turns out we weren’t going to get that
“thanks but no thanks” response after all.
And while I tried to swallow the validation I was receiving before my
eyes, I tried my hardest to see that this was THE best thing I could involve
Ben in at this very moment. Once I
swallowed that pesky softball once again lodged in my throat, I started to
focus on how I could support and enrich this opportunity for him. The moms…time to engage, myself. The vacuum-esque echo of their voices as they
chattered about schools, therapies, medications, social groups soon came alive
and I was suddenly hearing every word.
Every overwhelming word. They
were swimming…no, drowning in my
head. What does it all mean? What is ABA?
What is bio-med? Did she just say
15 IEP meetings so far for a child who is only 7? Three schools in two years? Intestinal lesions? Casein-free?
What IS casein? Should I be doing
these things already? Have I caused harm
by not having done so?
So I started talking…and listening…and talking some
more. It helped. I told them I was “new” at this. And they understood. They welcomed me, so to speak. I gleaned more from these moms in an hour
that I did from a month of reading. I
felt validated. In telling Ben’s story
to one mom, she smiled and sweetly said “we’re their moms, we always know.” By the time we left, I may have kissed
good-bye the notion that absolutely nothing is wrong with Ben. But in doing so, I gained some friends. Ben was invited to a birthday party. A BIRTHDAY PARTY!!! I now know what ABA is…and have social groups
at my fingertips. We’re going to get
there.
For a moment I felt as though I was at a swim meet…walking
backward into the pool…falling mid-way into a lane where a team was already
swimming a 800 meter freestyle.
Fast. No diving block to leap
from…no wall to push off of. Just. Start.
Swimming.
Toss me my goggles…I’ve got this.
I'm so glad you found a support group! Awsomeness!
ReplyDeleteHanging on every word as I read this - it is all going to be ok. And I am so happy you found people that understand, support, encourage and get it - whatever it may be. Ben will find his confidence one adventure at a time - and with you as his Lifeguard - you two are going to be Olympic style swimmers. Love and Hugs to you my brilliant, beautiful, strong friend. xo
ReplyDeleteIt's entirely too early for tears, Bliss. I am so happy you found support and Ben has camp...I am bawling like a baby the he got invited to a party. That's wonderful. Gah! My heart swells with love for you, and these kids that you are so amazing too. they are so lucky to have such an incredible mother. xoxo
ReplyDeletepardon my errors...typing through tears.
ReplyDeleteThat's great Bliss. One lap at a time...one lap at a time.
ReplyDeleteHow much you echo my thoughts of only a few years ago. i remember thinking "Ben isn't autie enough", until one day i watched him at a party, not interacting, off in his own world, etc etc, and i realized, "yeah, he is." it is rough, but eventually liberating.
And remember, don't overwhelm yourself with too much info. It's so easy to glean and glean and glean and not take that moment you need. remember that peaceful place you found at the beginnning of the break, and find it again. Don't stop educating yourself, but don't forget to care for yourself!! it's a careful balancing act, this.
I hope he has an awesome time at camp, and makes tons of new friends!
I continue to be inspired and learn from you. I look up to you for how you handle this new turn in your life journey of your family. ONe day at a time, one breath at a time, you do indeed, got this. Just keep swimming. that is the hardest thing to do sometimes, and yet, you my dear are a shining star. Human and loving and shining bright for me. For us.
ReplyDeletethis is amazing ! I am so glad you have found something that will be so helpful to you AND Ben!
ReplyDeleteI am SO happy for you and Ben!!!! This is exactly what you needed!!!! Big Hugs! You are amazing. You rock!
ReplyDeleteGot a little teary reading this yesterday.... Tru dat. Glad you found a crew!
ReplyDeleteYou are an incredibly talented writer and a very strong woman! Try to relax (if it's possible!!) this summer. You certainly deserve a break! Thanks for sharing this post!
ReplyDeleteHi! Following you from Jenn's Blogspot... Come on by and check out my blog. I'd appreciate the follow back! Have a great day!
ReplyDelete-Kat
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