Saturday, April 30, 2016

U is for Universe

On the upside of some extreme house cleaning: We have found the letter U!

I knew it was in there somewhere. Somewhere turned out to be in a rarely used bookshelf in the dining area, buried under cassette tapes and unused jewelry gift boxes that the kids loved to collect.

This has made James so happy. He truly is a Mr. Thing-in-their-place. Universal happiness, brought to him by the letter U.

Monday, April 04, 2016

Finding Your Own Words? Priceless.

James started saying words at age 3. Not everyone could understand them. The first time he told me he loved me, he was 4. Yes, I cried.

James has an interesting solution for communicating asking people questions he knows the answers to, scripting, and echolalia.

At 11, not everyone can understand everything James says. But he now can express himself (good and bad, this guy lets it all out). It's such a relief to feel like our communication window has opened wider.

Imagine being without words.

Autism Speaks has come up with an app to help: Able AAC. For the month of April, Autism Awareness month, it's free. FREE! Spread the word!

Saturday, April 02, 2016

April 2, And I See Blue

World Autism Awareness Day is April 2, 2016

How has your Saturday been going? I have spent mine doing errands, taking care of groceries, errands, and clean up. James is enjoying Little Einstein videos, because they discuss music and musical instruments. We played Red Ball off and on.

Why this post? 

If you don't have anyone in your life who is autistic, you may not be aware that April 2 is a kind of world-wide call to action about a developmental issue that is may look invisible, but will be a significant part of our futures.

What do I mean by calling autism invisible?

Well, autism tends to not have physical deformities. Autism presents differently for each person. For some, there is not a whole lot to see. Examples:
  • James is now doing his homework with only verbal prompts! He is 11, and his homework is basic arithmetic (this year -- last year he was doing long division, but that is a big digression) and his reading choices are pretty much "Green Eggs and Ham," "Where the Wild Things Are," and "Captain Underpants." I will supplement with multiplication tables and Chrestomanci, but am thrilled that this is the year he tackles homework without my being there right beside him.
  • James is becoming more independent, doing his laundry, taking out garbage, and helping me do the grocery run and pick up around the house. These are life skills that take perseverance to make into habit, and we were  told a couple times he'd never be able to do this. We tried anyway, and will continue to do so. Money is a tough nut to crack.
  • Last week, James was able to tell a family friend about a tough day he had at school. Because of his language delays (We were told after 6 months of speech classes that he might be non-verbal), this is huge. James started speech therapy at the age of 2 and continues to receive it at school. With his participation in a social communications class at the Swain Center, he is finally beginning to be able to let people know how he is feeling.
  • This morning, I took James with me on a breakfast errand, as he wakes up happy and bouncy. His teen sister needs a peaceful wake-up. It is a fact that siblings of kids on the autism spectrum need to be remembered, and have their needs met too. It can be sadly too easy to lose sight of, amidst IEPs, appointments, and other worries. I plan special time with my daughter because we both enjoy it and we both need a break from autism idiosyncrasies. 
  • I have to make a to do item to call, text, or email my friends. Autism can be very isolating. I can't do a Girls' Night Out or cannot attend many social events due to sensitivities and other issues. Movies are either in-home or Sensory-Friendly theater showings. Eating out can be  nerve wracking.
All this to say ... please consider that autism is alive and growing. Legislation for Autism continues to be debated. Healthcare reforms for autistic patients come and are challenged. Every 11-20 minutes, a parent or family's life take a sharp detour with a diagnosis of autism. As many families tend to fall off the social radar of many friends and family, they become unseen.

Autism will affect you, either directly or indirectly. The current large swell of previously diagnosed children are fast growing up, along with James. The benefits of early intervention are many, but what will their futures be? It is my hope that autistic adults will find their places in their communities, making a life working with others in places like the supermarket, schools, and local businesses.

Thank you, President Barack Obama, for recognizing World Autism Awareness Day.

What can you do? Be supportive of those friends or families sealing with autism. Recognize that legislation relating to IDEA, Regional Centers, and healthcare affect not only you, but also those largely unseen, growing numbers of individuals with special needs ... and send an email or make a phone call when voices are needed to continue services and programs that are designed to help them be as independent as possible.