Marylou Coffman On Raising A Child With Aspergers

I recently asked MaryLou Coffman to draft an article for my readers on the topic of raising an Aspergers child.  MaryLou is a frequent speaker at schools and support groups on this topic, and has also published an article in the Autism Digest, which is reproduced with her permission below.

Let’s Talk Aspie

 by MaryLou Coffman

I recently had the honor of participating in a library program called The Human Library.  It is a series of interviews that are designed to let the audience experience what it’s like to be someone else.  They asked me to speak on what it is like to live with a child that has Aspergers.

Those of you that live with Aspies know that the answer to that question is, “WOW-where do I begin?”  I related our story as best I could beginning with the day that our grandchild came to live with us, which was nearly since his birth, up to our current high school freshman, adolescent time.  When the interview was over and the audience could ask questions, I couldn’t help be struck by our “sameness”.  We all know that each child on the Spectrum is completely different but there is this thread that links us together as parents and we can and need to identify with each other: 

 “When and where was your child diagnosed?”

 “Does your child eat anything other than Mac & Cheese and Chicken McNuggets?”

“What medications is your child taking?”

“How do you handle school?”

“Do you have a psychiatrist you like? What about an OT?”

And always, “How do you get through the day, the week, the month?”

I don't know that there is any one thing that I can say that gets us through the day but I do know that I had to change my entire style of parenting to make it work.  I'm not really a positive person by nature but I've learned that it's the only thing that works!

When Dave was just three years old bedtime was a heartache.  He would cry and cry and cry every night when he was trying to fall asleep until one glorious night when I invented the Magic Fairy (see article below).  She would leave him a bag of tiny toy surprises on his floor and in the morning he could pull a ribbon from the bag and get a surprise if he could fall asleep without crying.  I have no idea where that came from but from that moment on, it was positive, positive, positive.  We lived by star charts and tiny toy surprises and we wouldn't even know about Aspergers until nearly two years later.

When Dave started preschool, my positive parenting strategies were really challenged.  There were so many issues for us to overcome. One big one was shoes and socks.  Dave hated wearing socks.  They had “bumps” I knew nothing about sensory issues.  We would struggle every morning with putting on shoes and socks. We would both end up crying.  I was late for work and my neighbors thought that I was a crazy lady walking down the sidewalk carrying his shoes and socks with him following behind me crying all the way to the car.  I needed to figure out a better way - Star Chart #1 was born.

I took an 8 ½ x 11 sheet of paper, wrote Dave's Awesome Star Chart on the top and drew a grid of five boxes across.  I told him that every day that we could leave the house without crying, hopefully with shoes and socks on his feet, not in my hand,  I would give him a shiny gold star on his chart and when he got 5 stars, on Friday, we would take a bus ride. It worked! It was still a struggle for him to tolerate socks but he did it for the star and the eventual bus ride.  We talked about the bus ride all week.  Which bus would we take?  How far would we go?  What time should we leave?  The week passed much easier and we rode the bus every Friday for a very long time……sometimes even with shoes and socks!

Our next big struggle was real school! Dave went to a very small private school where we lived in the city.  There were only 5 kids in his first grade class. Aspergers can hide very easily in that environment, but when we moved to the suburbs and a class of 24 in a real public school, not so much!  Thank goodness we lucked out with getting a teacher that had just come back from a workshop on Aspergers.  That was the first time I ever heard the word. Everything fit!  Dave was 10 out of 10 on the Asperger’s check list.  The Children’s Research Triangle confirmed the diagnosis and we began our endless journey of star charts, IEP’s, OT therapy, and much more.

I don’t have to tell you what a struggle school was.  My heart would break for him every day.  He wanted so desperately to please me but there was so much to overcome before we even left the house in the morning that by the time the school day ended, a meltdown was inevitable.  Again, I needed to find a better way – Star Chart #2.  This one was a huge success and took us all the way to 4^th grade.

I needed a visual that would take us through the entire day.  Something that he could see build and progress as the day went on.  This time I took a big five point star, sectioned it off, labeled each section with a part of our day, and cut them apart.  As we went through the day, I would put up a piece of the star.

When he got up on time, we put piece number one up on the bulletin board with much enthusiasm.  After he got dressed, up went piece number two; more excitement.  Successful breakfast was piece number three then off to school we went.  Three pieces up on the board bigger than life and positive, positive, positive!

Piece number four was the homework piece. Once we were done with homework up went piece number four.  Nearly there, bedtime was our final piece and mission accomplished - made it through the day!  We celebrated each and every piece of that star and when it was complete at the end of the day we cheered and couldn't wait to start the next one.  At the end of the week, we celebrated with a special treat usually something electronic by this point.

This five point star took us all the way through to fourth grade.  We would change the pieces as the months and years went by but the process was the same - just make it through the day.   Everyone that has a child on the spectrum knows how hard it is to just make it through the day, the week, the month and each of us finds our own way to "make it".

From the moment that Dave was diagnosed, I have had to explain him to my family, the school, and even to the community.  That’s why I know that it is so important to spend time and talk with other parents that have kids on the Spectrum; people that already know what you’re talking about; important to be able to say, “yeah, my son or my daughter does that too!”

 We need to share our successes and failures, laugh and cry together, tell Aspie stories to each other and teach the world about our kids.  Our kids can’t always hug us or us them but we can hug each other by sharing our lives and learning from one another.

I’ve got some great Aspie stories to tell and I would love to hear yours.

THE MAGIC FAIRY BAG

The following copyrighted article was originally published in the Autism Digest May-June 2009 issue, and is reprinted here with permission from author MaryLou Coffman.