For the first time as a family, we are taking a vacation. We rented a condo on the Jersey Shore for a week. My daughter with autism, aka Bunny, loves the ocean. Her face lights up when she sees it. She throws herself in, whole body, not caring about the rough surf, getting a mouthful […]Read more
The second Ryan and I arrived at the playground yesterday, he walked right up to a boy around his own age and, excitedly, said “Hi Raul!” I’ve never met Raul, but Ryan often refers to Raul and Mariah as his friends on the school bus.The boy kind of sta…Read more
With high school seniors across the country working on applying to college, it can be stressful waiting for that first…Read more
I craned my neck and ears through the receptionist’s window to hear exactly what was going on. Whatever happened to one-way glass?
Strumming an easy volley of chords, Reid was writing a song. What?
By himself. Independently. Smoothly.
Not in fits and starts. Not heavily prompted. No carrots dangling.
You may wonder why this is news. Reid has a musician Facebook page, his own website and is about to release Purple Party, his first full-length CD of original songs. But this was different.
Angela wasn’t helping. She was watching…and recording it.
She wasn’t providing brilliant scaffolding, fill-in-the-blank prompts, or the chord structure. She didn’t have the collaborative agenda that made Purple Party possible. Her heavily lifting wasn’t happening.
It had been done, make no mistake, in regular weekly doses over the past ten years during their music therapy sessions. She had worked diligently to create the space for this magical moment. That sounded effortless.
Reid extemporized a second verse:
Its time for you to go home and sleep…
What are your dreams for tonight?
Thank you for coming and…
“What about Emma (the watchful intern)?” was Angela’s only reply.
Here’s for you Emma. Goodbye Emma
Have a good night sleep…you don’t have any school
But if you do…make it a good day.
I’ll see you next week at Angela’s
“What about Leah (the receptionist outside the closed session room door)?” Okay, maybe Angela was prompting a bit.
Good night Leah
I hope you have a good night
See you next Thursday
I love you, Lelah
A tongue twisting bridge emerged like one of those compounding juvenile picture books:
Goodbye Angela Emma Lelah and Reid…
It was easy, like Sunday morning or Michael Buble in a lounge act.Read more
Most of is know that Autism parenting can bring with it many, many challenges. It’s exhausting and frustrating as well.
That being said, there are also moments of peace and tranquility, where everyone is getting along.
I can sit back and relax for a minute because in these moments, everyone is happy and at peace. I refer to this as the lighter side of Autism.
- The Lighter Side of #Autism: Snuggles
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- Being a Dad isn’t easy
- Bad News: Gavin’s Hallucinations Have Gotten Worse
- A smidgen of #Autism Parenting insight
- I’m 38 years old today and I’m choosing to embrace it
- A break from the chaotic week
- What #Autism or #Parenting topics would you like me to write about?
Today I am going to write about puberty and girls, specifically one girl who has autism and is now 15.Before you get all cross with me, if I thought there was ever a chance that Grace could read this, then I would be asking her to help me write it. Bec…Read more
It has been forever since I have been to this space. I miss pouring my thoughts out here.So much has been going on in my house.We are expecting another baby! I have had a tough time adjusting to this both physically and emotionally. It was unexpected a…Read more
https://www.youtube.com/watch?v=6ul-cZyuYq4I just returned from a blissful vacation hiking the California coast. The day I got home I took Martin on a special outing to the roller rink. Martin is an excellent skater. He’s had roller skates for a few ye…Read more
As we drove to the “mental exam” SSI requires to qualify Reid for funding (now that he’s over 18), I prayed:
Lord, guard my heart. Whatever happens, I want to see Reid through your eyes. Whatever they say or determine, doesn’t change your plans for him. Guard my heart and his from the world’s misperception and lies.
I have learned from experience that these appointments, however routine, can leave me in despair. Not this time, I declared in Jesus name.
We walked into the generic medical office chosen to provide an outside opinion of Reid’s capacity, despite the paperwork and access to records I had already approved. It was one block from the Social Security office, in a neighborhood we don’t frequent. Nicer than DMV, yet reminiscent in a way.
Hellooo! Reid welcomed himself at the reception area appointed with framed prints of American veterans erecting flags.
Candy?! Miss, may I have one of those–from that bowl? There were two candy bowls. He gestured to the bigger one by “the lady on the computer.”
We checked in. I answered inane questions, as if I were Reid, on a form and clipboard:
Who drove you here?
Have you ever hurt your self?
Do you see things others don’t see?
What disables you from working?
Have you received treatment for this?
The million dollar question on my mind was: Who writes these questionnaires? The process itself lacks dignity and reeks of ignorance and disregard. I wanted to rephrase every single one.
An underemployed female doctor lacking affect called us the second time. A very standard cognitive assessment ensued.
I’m ready for the interview! Reid said taking the hot seat in front of her laminate desk. The blinds were closed. I sat on the side as directed.
Are you his mom?
Yes. So far this was easy.
When was he diagnosed with autism?
What behavioral issues does he have?
All those associated with the spectrum. Keep it simple.
Didn’t he have any intervention, ABA therapy? Maybe I was supposed to have listed those.
Oh yes. We did all that; it was just 15 years ago. He had a full-on home program, ABA, PRT, Floortime, the works.
Reid watched me, obviously wondering when it would be his turn. Seems like the interview is for me, doesn’t it? It’ll be your turn in a minute.
When it was, she asked his name. Check. Address? Check. Birthday?
June 4, isn’t that right mom? I nodded.
19…. I helped when he got stuck.
That’s okay. She made notes.
How many days in a week?
How many months in a year?
Well, let’s see… He raised his fingers one at a time, in no particular rush.
January is 1, February is 2, March is 3….. He restarted around May…which is 5…then finished strong.
November is 11…December is 12. Twelve months!
Wishing she got paid by the hour, she smirked and moved onto another section.
What would you do if there was a fire in the building?
Get low and go! Reid said without hesitation in all seriousness, recalling two loud fire drills at school in the past month.
Our little-while doctor nearly chortled at the creative, appropo, and succinct response. She modeled a connect the dot numerical sequence. Reid completed his longer one in good time and handed her the paper.
It doesn’t make anything, he pointed out as if to say, what was the point of that?
No, there’s no picture, it took her a minute.
More than once, he took the easy road handing things back to her saying, it’s too hard. He seemed to have some opposite of test anxiety–maybe a new condition we could call “test familiarity.” He mimicked her prompts in anticipation like they were the lyrics on our Top 40 radio station.
She flipped forward in the spiral for harder material, then back when Reid was stumped. Recognizing the drill, he called her out to save time, I need an easier one.
Can he read? She addressed me now.
Yes. She handed him a list of single words in a grid.
Reid played to her expectations, beginning at a labored speed.
When he got to “qua–ran-tine” at the bottom of the page I couldn’t help but think again about getting him a cameo acting spot on Sesame Street. He shines at dramatic decoding, with or without Elmo.
Okay, I’m going to ask you to write some words now.
Oh, like a spelling test!
She was more than cracking a smile now. Reid brings joy to the most deadpan of faces.
We’re all done then. I will submit my report. There should be no problem at all recommending him since he could not complete a 9-5 job 5 days a week.
Well, thank you for your time. What else could I say?
I put my manila folders and sweater in the back seat. Mom, let’s go!
Yup, that was kinda boring but, at least you got to miss school. Let’s go!
Neither this man nor his parents sinned, said Jesus, but this happened so that the works of God might be displayed in him. John 9:3
It can be a slow process, but having your child adapt to being around other children, observe them in anRead more