Meriah Nichols from A Little Moxie has a summer blog challenge and I’m always up for a challenge so I thought I’d take her up on it! Also, I’ve never been a part of a blog hop…it sounds so festive and fun, so another reason to join in.
Here’s what she has to say:
Let’s try and follow a story arc. Let’s try and write our way through the whole arc of our connection with disability, and then let’s gather the posts at the end of the summer series and publish them in a book! Sound good? Ambitious enough?!
She includes the entire collection of prompts HERE – please make suggestions or tweaks – so that we have time to write the posts in advance or find old posts and re-work the old posts (a practice she highly recommends!)
The links for each week will remain open for two weeks.
This week’s prompt is: My Connection with Disability: An Introduction!
Here is my contribution:
My Many Personas for My Asperger Son
By Jodi Murphy
It may not seem like it, but we’ve come so far in being able to identify and diagnose someone on the autism spectrum. Even though Aspergers Syndrome was classified in 1944 by pediatrician Hans Asperger, no medical professional or therapist ever mentioned or discussed it as a possible explanation for my son’s developmental and social issues. I knew at two that something was amiss and even suspected that Jonathan was autistic but the professionals were adamant that he couldn’t be because he was high functioning. But we moms, KNOW our children and when he was medically diagnosed with Aspergers Syndrome at age 13, I was already doing what needed to be done to help him grow to reach his best potential. He’s an adult now, age 27, and I’m still (and will always be) vigilant about his well-being. I have taken on many roles as his guardian angel and life coach, using super powers I never thought I had and doing things I never thought I could do.
Winston Churchill said, “Never, never, never give up.” I don’t and I never will. I’m not an aggressive or very outgoing person, but when it comes to Jonathan and his needs, I won’t take “no” for an answer. Like the time I found the fully-booked, highly-recommended occupational therapist and after she said “sorry not possible,” I convinced her to take on “just one more client.”
The good news is that Jonathan is high functioning, and the bad news is that he’s high functioning. What I mean by this is that he often falls through the cracks when it comes to getting access to services and interventions that can aid him in his growth and development. In Northern California, where we live, Aspergers Syndrome isn’t a diagnosis that allows him to become a client of The Golden Gate Regional Center, and if he isn’t a GGRC client, then that limits the services available to him. Why? Because most of the organizations are paid by the state through GGRC and aren’t set up administratively for private paying clientele.
When Jonathan became a teenager, I knew I had to find someone who could help me deal with his emotional development, because I could sense that all he was hearing from me was “blah, blah, blah.” And as parents, we learned long before that Jonathan was just too sensitive to any constructive criticism from his father, so my husband always tries to keep things light and positive. I found the perfect solution in an organization that offered life skills counseling…the only problem was that they didn’t take on private clients because they got paid through GGRC. So I put on my virtual corporate business suit and was determined to make my son their latest client acquisition! I prepared a two-page, succinct, benefit-oriented executive level summary to convince them that they were the only ones who could help (which was the truth). What did I have to lose? Two weeks later I got a call from the director saying that they, indeed, wanted to work with Jonathan and figured out a way for us to pay them directly. It was life-changing, still is, and Jonathan’s been benefiting from their services for the last 7 years.
Jonathan seems to go through phases where he has tremendous growth, reaches a plateau, stays there for awhile, and then starts to struggle socially and developmentally. With no crystal ball or prognosticative abilities, I find that I must have my eyes and ears constantly “on the ground’ to clear his path and scout for supportive individuals and organizations that can join the ranks when called to duty.
I often picture myself as one of the early pioneer women blazing a trail into the unknown to create a better life for their families. I summon their courage, strength and fortitude as I help my son and his drive to be fully independent.
Citizen of Oz
Dorothy, Lion, Tin Man, Scarecrow and Wizard of Oz—I’m a combination of these characters using all my powers, influences, creativity, fast-thinking, courage, and heart to help my son thrive. Today, my focus is on innovating opportunities for Jonathan to earn a sustainable income. He is a professional commercial actor and voice over artist. He has an agent, and gets a lot of work but it’s unpredictable and he often gets overwhelmed with scheduling, prioritizing, and the administrative tasks involved. And a competitive field, it requires self-promotion and networking. These happen to be my areas of expertise, so I stopped working for my clients as a freelance marketing specialist, and now provide this for Jonathan.
I’m also really thinking out-of-the-box so he continues to build his self-confidence and independence. I founded Geek Club Books, autism storytellers through mobile apps for positive change. We use technology to engage and storytelling to entertain while teaching others about autism. Jonathan helps me share his real life experiences in a unique, respectful and, hopefully, entertaining way to share how someone on the spectrum overcomes obstacles, triumphs over social anxieties, and thrives…quirks and all!
Who Will I Be Tomorrow?
Sherlock Holmes? General Patton? Wonder Woman? I’ll be whomever I’m called on to be. The only thing I know for sure, is that I am and always will be Jonathan’s mom.