What does April Mean to You?

By Jan Randall

I’ve known for the last month or so that it was my turn to “blog” on a topic, so I’ve been batting around a whole lot of ideas on what I wanted to talk about. Then it hit me. April 1st is less than 2 weeks away and we all know what that means; once again it’s time for Autism Awareness Month. YAWN… Sorry you will have to forgive me for not being enthusiastic.

My son is 28 and I remember when Autism Awareness was desperately needed. 20 years ago when I started working at Community Autism Resources I was shocked and surprised to meet someone who had heard of Autism.

Today, I think people are pretty darn aware. Everywhere I go I meet people who know about Autism. I’m at the supermarket and the produce manager tells me about his nephew with Autism, the girl at the register tells me about her friend’s child. At the dentist’s office I start chatting with a gentleman whose neighbor has two kids on the Autism Spectrum and his cousin has a toddler who was just diagnosed. The physical therapist I see, his wife teaches kids with Autism. Think about it, now it’s rare to meet some who doesn’t know about or have some connection to Autism.

In March 2013 the Center for Disease Control released the results of a survey of parent’s across the US. The outcome: 1 in 50 children between the ages of 6 and 17 have an Autism Spectrum Disorder diagnosis. This statistic tells me that we do not need more awareness, WE NEED ACTION!  We need the kind of Action that will make a difference in the lives of children, adults and families living with the day to day challenges of Autism Spectrum Disorder!

With April right around the corner I think we need to change the name to Autism Action Month! Think about the positive changes we can make if each of us makes some time to be Autism Active.

For me, Action takes many forms but one of the most important is supporting Autism services in our own communities. For those of us in Southeastern Massachusetts it’s supporting Community Autism Resources. That may sound a bit self-serving but the importance of local services for families can’t be understated. I see and hear it every day. Parents and grandparents need someone to talk to and to answer their questions about therapies, communication, social and behavior challenges. They need information about the medical issues that are part of Autism, they need to learn how to negotiate the various systems they will encounter, they need to know where to go to find the evaluations and therapeutic services their child will need, sometimes for the rest of their lives.  Just yesterday a Mom wrote to us and said: “You are such a critical piece for all the families.  You help put the pieces together.  So Thank You.”

Action is also about taking the time to get better educated ourselves or to educate others about the best ways to support children and adults with Autism Spectrum Disorder so that they can grow, and learn and reach their full potential. It’s also getting educated on ways we can help them be as physically healthy as possible, as so many of our children have medical issues as well.

Each of us needs to be educated too about the organizations where we choose to donate our time and/or money to support the Autism cause. Not all charities are created equal. Before you donate do your homework so you can be assured that your dollars are actually helping!

Contacting your state legislators, congressmen and senators is vitally important too. The legislation issues that impact people with Autism and their families are endless and include:
•    The continually rising rates of Autism
•    The need to look at the contribution of environmental factors in the rising rates
•    The fact that tens of thousands of people with Autism across the US are aging out of school with no choice of where to go because programs that are geared for specifically for adults with Autism are virtually non-existent
•    And FUNDING for services

I hope you will join me this April in some serious Autism Action! I hope too that you will share your ideas for Action in the comments section below. Together we can bring more than awareness to our community, we can, to quote Ghandi, “Be the change that we wish to see in the world.”

 

Pausing to Listen

 

Pausing to Listen

My adult daughter with Autism loves to shop for Holiday themed items.  In January, she mentioned that she wanted to go to the store to buy some Pilgrims.  Fall is definitely our favorite time of year.  That being said, I reminded her that we could not buy Pilgrims in January.  I talked about going in the fall to buy Pilgrims, Pumpkins and other assorted Harvest items.  Of course our discussion was taking place as I attempted to complete the myriad of morning tasks I have to finish before the van comes to pick her up for her adult program.

As I walked up and down the hall with laundry baskets, lunch items, shoes to put on etc., Devon began to discuss over and over again her desire to buy Pilgrims at the store that day.  I once again let her know we could not do that at this time of year.  Devon began to cry.  I put everything down and walked over to her to let her know we could buy Valentine’s Day items or something else, but she just wanted to talk about the Pilgrims.  Once I stopped and sat next to her, she told me she wanted to buy “the short Pilgrims.”  Finally I understood.  I said, “ you want to buy Leprechauns, and she said, “Yes, the short Pilgrims who wear green.”  We are Irish, and we have had Leprechauns in the house for every St. Patrick’s Day, but for some reason the name did not immediately come to her.  I am very thankful that she has the ability to expand on her descriptions, because really, when you think about it, Leprechauns do look like short Pilgrims.

Of course we went to the store that day to buy Leprechauns [always to be known as “short Pilgrims” in my house from now on]  and everyone was happy.   It is important to mention, that it is possible if I had more to do that morning, I may not have sat down on the couch, I may have continued to remind Devon that it was January, and the Pilgrims were put away until next Fall.  She may have gotten more upset, my decision to finish my morning tasks instead of investigating what she wanted could have impacted her entire day.  Something about the way she looked at me stopped me in my tracks.  I knew there was something else she had to say, and I am happy that I finally “paused” to find out what it was.  I will try to remind myself of this every morning as I walk up and down that hall while she talks to me.

Devon would want me to wish you all a Happy Thanksgiving…oops, St. Patrick’s Day!!!