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Walking the Special Needs Tightrope

April 3, 2012 in Community Wisdom, Featured, Featured Member by Jennifer King

Max, my 8-year-old son, has autism.

I’m not fond of the high functioning versus low functioning dichotomy, but I think it is safe to say that Max is minimally verbal and that his receptive language surpasses his expressive language.

Last year I learned at Max’s school he does jobs. Chores, basically.

Other than picking up his toys, I had never really asked him to do chores at home, and I have to admit, I had even backed off on that after his diagnosis.

It wasn’t a conscious decision.  I didn’t sit down and think, “Max can’t do these things, he’s autistic.”  Yet I had dialed my expectations way back and that was a mistake.

So I started asking him to help more at home and for the most part he has risen to challenge.

He is getting better and better at following instructions, such as, “put this on the table” or, “bring that to mommy.”  Using simple, “first this, then that” phrases helps a lot.

When Max gets in the van these days, I ask him to hand me the seat belt so I can buckle him in.  He usually does this no problem.

Except for when, a few ago days, he didn’t. Max climbed in his booster seat and I asked him to hand me the seat buckle, but he  just turned his head and looked out the window.

This annoyed me far more than it should have.  I asked him again.  There was still no response.  Getting frustrated I said, “If you want to go to the store, you need to hand me the buckle NOW!”

At this Max started to hand me whatever he could reach, which happened to be the toys and books tucked into the seatback pocket in front of him.  It was clear he had no idea what I wanted from him.

He hadn’t been ignoring me, or disobeying me.  He simply hadn’t understood. I thought back about what exactly I had been asking him.  I used the word buckle instead of the seat belt.  I restated the question, asking for the seat belt this time.  He smiled and laughed a little, clearly relieved.  He found the seat belt and handed it to me.

I changed one word out of the sentence, and he had no idea what I wanted.  I had assumed he understood and I was wrong.

The good part is Max forgave me and now he knows what a seat belt buckle is.  The bad part is I hadn’t wondered why he didn’t do as I asked.  I assumed he understood me and I started to lose my temper.  A big mistake.

Sometimes I feel like I am walking a tightrope.

Lean too far one way, and I’m holding him back. Too far the in the other way, and I’m confusing and frustrating him.

Sometimes it’s a more than a little overwhelming, but as his teachers are always telling me, nobody knows Max better than I do.

I need to trust myself even though I will make mistakes from time to time.

And I’m not going to fall off the edge of the earth when I do.

————-

Jenny is a single mom to two boys, one with autism and one neurotypical living smack dab in the middle of Minnesota. She blogs at http://www.jitteryplanet.com/ and is on Twitter as @jitteryplanet

Around the Community

October 7, 2011 in Featured, From Julia by Julia Roberts

Happy Fall. Well, here in the South anyway. We’re finally seeing a season. Which helps the mood around my house.

We just want to point out some threads on the site as well as some tips! Please click in and offer some support to others. YOU make it better. Share, support and help us grow!

New Series…Did you know that community member Kate Canterbury is heading up a new series? It’s called “Yes, I am a Special Needs Parent” and it’s meant to encourage parents to share the hardest part about claiming our special needs parenthood. If you click on her name, then click on Activity you’ll see the 3 posts she’s got up for the series. This will be a monthly series. Be sure to contact Kate (you can click on Sent Private Message to  reach her!

School  and IEP Groups...IEP Discussions is one of them, be sure to check in if you have questions about an IEP or are needing support about one of those meetings you  might have coming up. Also a new group for 504 ADA and Parenting the Special Needs College Student has started so go and join it if you have an interest in information about college and disabilities.

Adults…happy to say we also have a fairly new group for College Students & Adults with Disabilities started by self advocate Erin Breedlove (@erinrbreedlove), go and join that group because Erin is terrific and open and welcoming. Get to know her!

Groups for FunScrapbooking is under that category. Be sure to join and check out group owner Siobhan’s tips and tricks. She’s a photography and Creative Memories rep, in case you need any supplies. She also makes some great books and she is great at helping people stay focused (namely, me).

Stressed? So, I’m  headed over to our Caregiver Stress group. Come and talk about it. Also, there’s a private group you need to ask to join that is Room for Rants. Join and share what is getting under your skin.

Mental Health…Recently, community member Lena’s son has been suffering from debilitating anxiety and she could use some support and understanding.

Where to start on the site? The best, quickest way to see what is going on is to visit the Latest Activity Stream, which you can click on in the bar on the top of the site. You can also check out Our Forums, which also can be found on the top bar. And of course, in the center of the site on the home page you will see what current topics are being visited.

How To…Wondering how to do something? Here’s a list of How To topics for you presented in a simple way.

We hope your weekend is off to a great start. If it is, share with someone who could use some support in the groups, and if your weekend isn’t off to a great start, share the struggles. It’s always better to know someone is in the same boat, right?

Joe Dimino: The Future for Miles

August 11, 2010 in Inspiration by Joe Dimino

Can you tell me a little bit about yourself and your family?

The Dimino family resides in Belton, Missouri (suburb of Kansas City). It includes Joe, Carrie (lovely wife of 6 years), Zen (12-year old brother) and Miles (5). Joe is an IT technician by day and a visual artist, videographer/photographer and writer at all other times. Carrie is a professor of English at the University of Missouri-Kansas City, an avid reader and a skilled writer. Zen is entering middle school this fall and is excellent in both karate and soccer, along with being a very avid fisherman. Miles is going to be in Kindergarten and he loves to swim, play and make art. Our entire family is very close and thrives off the time that we all have together to do a host of things whether in the house or on a run. Carrie and I are conscious advocates for Miles in the autism spectrum and very involved in both of our boy’s lives.

How did you find out about the My Baby Rides the Short Bus, anthology?

My wife, Carrie, follows an Autism support listserv out of Lee’s Summit, MO and someone posted a notice to submit a story for a new book that would be released in the Fall of 2010. From there, I began crafting a story that my wife embellished and made into a workable slice of work that appears in the Short Bus book.

How did you choose to submit “Watching My Son Grow: An Illustrated Timeline from Birth to Three Years Old?”

I really believed in the overall project of shedding more light on parents that live with both Autism and the Autism Spectrum on a daily basis. To weave together an anthology of stories that share the tragedy and triumph of daily life in both a raw and clever ways ultimately swayed me. Overall, I’m not shy about being a proponent and advocate for my son and the Autism Spectrum. I find that every effort a parent or family touched by autism only makes it more plausible for folks to understand and help the momentum of passing needed legislation to assist families tackling high expenses in conjunction with therapy and other needs.

From Joe’s Blog: The Miles Alfonso Dimino Blog: The Future for Miles

Miles has been going to the doctor a bit more this year and he’s really taking a shine to it. In fact, he has been telling us lately that he wants to be a doctor when he grows up. On a recent trip to the doctor’s office, he was ecstatic to get a pic with one of his doctors. Enjoy …

You can buy a copy of My Baby Rides the Short Bus by clicking the link!

Our experience with Therapeutic Listening as autism therapy

July 12, 2010 in Special Needs News by Admin Dawn

When I first heard about therapeutic listening, I was very dubious. I didn’t understand how wearing headphones and listening to weird sounds was going to do anything except seriously tick Billy off. Having completed the program now, we still can’t conclusively say that his gains were specifically because of therapeutic listening, but I would call myself a tentative believer. My husband, Dave, for the record, is still skeptical.

via Our experience with Therapeutic Listening as autism therapy | Autism Support Network.

Have you tried therapeutic listening? Did it help?

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