Thursday, January 31, 2013

Embracing the Puzzle

It occurred to me today that it’s been nearly a year since Ben’s diagnosis…a year since we first heard “Asperger’s” and “Ben” in the same sentence. A year full of relief and struggle and successes and setbacks…quite a year, indeed.
Over that period of time my allegiance to this label has varied. Although I was relieved to finally have an answer that made sense to me…one that clicked…it still meant that there was something NOT typical about my child. While I can appreciate how my Ben is different than other kids, I still fear for him…fear for his ability to do well in school…fear for his ability to form friendships and caring relationships as he grows older. I had shaken hands with Asperger’s and maybe even invited it into our home for dinner…but I don’t know that I was entirely ready to make a bed for it. Know what I mean?
Some strange voice in my head kept telling me the tests were wrong. He’s fine…he’s not really on the Autism Spectrum. Ben is quirky. He’ll grow out of it. I just need to parent him better. Yes…that’s it…I need to work harder with him. I can pull him through this “rut”. That’s what it is. It’s a rut. That’s all.
I’ve been wandering through my days…smiling and nodding…explaining Ben’s new “situation” as some would call it…”Yes, Ben is on the spectrum”. “Yes, we have an IEP.” “Yes, Ben is getting social therapy.” And while I’ve idly occupied my spot in line of the parents with kids on the spectrum…I haven’t been an active participant. For a variety of reasons. If I’m honest, this is quite an intimidating group of parents with whom to associate. And I get it. They (we) are warriors for their kids. They (we) have to be. Who else is going to stand up for their (our) kids to ensure they are afforded all of the opportunities they deserve?
See what I did there?
I’m trying. I’m trying to insert myself. It’s tough. I suppose if I whip out my card that says I’m an Autism parent I’d have to be ready to represent at any given moment. What if I’m quizzed? What if I can’t carry on a convo in a group of these parents?
What pisses us off about Jenny McCarthy?
What is our stance on immunizations?
How do we feel about Autism Speaks?
<lost look, glancing side to side>
Uh….I don’t…know? I don’t. Really. And honestly at this very moment I don’t care. I am by NO means belittling others’ interest in these matters. I realize people have spent a lot of time, energy, blood, sweat and TEARS on all things Autism including what I mentioned above. I can only speak for myself and where I am right now in this journey. Right now my focus is on my son and figuring out where to go from here.
Up to now, Asperger’s has been a neighbor or fond acquaintance. I’ve kept it at arm’s length. Not ready to take our relationship to the next level. And in doing so I’ve not entirely accepted my son. How horrible is that?
Today, I vow to accept what I know to be true. I am not only shaking hands with Aspberger’s…I am embracing it.
My son has Autism.
I am an Autism mom.
Typing those simple words…simple as they are…took 10 minutes to type. And sent burning tears from eyes down my face. I can’t yet pinpoint why. But I can’t move forward until I say those words.
As I said, I’ve not yet been what I would consider a card-carrying Autism parent.
Until today.
Today I purchased a beautiful puzzle pendant. For me to wear. Around MY neck. Every day.  And it will serve as my reminder. A reminder that I am doing everything I can. That it’s not my fault. That Ben is wondrous. It will serve as an education piece. A talking point. And while I may not be prepared to discuss my thoughts on subjects such as changes to the DSM or other health care or political hot-button topics, I AM prepared to talk about my Ben. And OUR journey thus far. I owe that to Ben. I owe it to the other parents out there, standing where I was a year ago. Where I was six months ago. Where I was this morning before this change of heart. This puzzle is not so bad after all.
**The pendants in the photo above were found through Grape Jelly On Pizza and a link she shared today from Designs by Ja9.


  1. well done, mama. well done.

    I have watched you grow as a mother and advocate in the last year, and i am so PROUD to know you.

    *ass slap* now get out there!

  2. Befriend your fears...and you will find peace. He is so special and full of life and spark..and with you as his mama - there are no limits. Beautiful pendant. love you girl. xo

  3. I too am right there with you. My 9 year old dx 2 mo ago ( age 9) high functioning, smart, sweet boy. Thank you for this!!

  4. This is so beautiful. Sending much love to you this morning xoxo.

  5. Love this, love you. Let it come as it may, it's a hard thing to embrace. Logan is still undiagnosed, but even after 17 yrs I still have days that its tough to know what to do next. Just keep loving him, and that is enough some days. Ben is lucky to have you as his mom <3

  6. Please, please read these two posts of mine - I'm the mother of a teenage son with Nonverbal Learning Disorder, and I want you to know that there is a LIGHT at the end of that tunnel. NLD is very similar to Asperger's, and the agony of what he went through in his younger years was heart-wrenching for me as his Mom. But hang in there. It gets better. And I'm not sure I'd ever trade it given the beautiful, sweet, special young man he's turning into. HANG IN THERE!!

  7. I was the advocate for my daughter, I knew she needed help, that she wasn't where she should be socially. When we got diagnosed as PDD-NOS I was glad that we finally knew, but that was quickly replaced with, "I don't know. Maybe she is just shy." I still struggle with it 4 years post diagnosis, but it's easier to accept some days more than others. In a way, I feel like I don't fit the autism parent category simply because our struggles aren't as bad as the others I read about. But we struggle all the same.
    Keep moving forward, one day at a time. We'll get there together.

  8. Beautiful. Thank you, and congratulations for having the courage to put yourself "out there"; you're doing great. Both of my sons are on the spectrum, and I truly believe that our family's openness about autism has helped by boys(and my husband and I) more than we ever imagined back in the dark scary days of initial diagnosis. It's clear from your writing that you love accept and appreciate your son. Ben is blessed and lucky to have you for his mom.

  9. I don't think that I can even comment anything that does this justice. The only experience that I have with spectrum children are through my professional life. I don't know what it's like to be in your shoes. But I feel I can relate to you because I know what it's like to love my child. And your love for yours shines through in this post.