Monday, June 11, 2012

Hope Swims

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. 


  1. I'm so glad you found a support group! Awsomeness!

  2. Hanging 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

  3. It'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

  4. pardon my errors...typing through tears.

  5. That's great Bliss. One lap at a lap at a time.

    How 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!

  6. 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.

  7. this is amazing ! I am so glad you have found something that will be so helpful to you AND Ben!

  8. I am SO happy for you and Ben!!!! This is exactly what you needed!!!! Big Hugs! You are amazing. You rock!

  9. Got a little teary reading this yesterday.... Tru dat. Glad you found a crew!

  10. You 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!

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