Mia's Story

Depending on whom you ask, 1 out of 68 (CDC) or 1 out of 45 (government parent survey) kids are diagnosed with an Autism Spectrum Disorder. More boys than girls as they estimated 1 out of 42 boys and 1 in 189 girls. Nevertheless, Autism is affecting over 3 million individuals within U.S. and it seems as if autism is a big thing nowadays. Is it? Has it always been, and we just didn’t pay attention to it, or is it really something new? The reasoning behind the difference between the numbers between boys and girls differs. One theory that I’m inclined to support is that girls are better at hiding their disability.

As I’m not a researcher nor a physician, but only a mother, I am unable to give you anything else but guesses, gut feelings, and my very own story, perhaps it should be called Mia’s story, and as they say; one kid on the spectrum, is only one kid on the spectrum. Every child with autism is different from the other, and every family is equally different. But let’s go back in time now.

I’m watching my three-year-old daughter as she is playing by herself. She starts with her Legos and is sorting them by size and by color. Small reds, medium sized reds, and big red… the ritual is being repeated over and over again, and after the red bricks come the blue bricks, then yellow and orange is the last color to get her attention. She screams “no” if I try to help, and when she’s done no one is allowed to touch her bricks. I leave the room as she tells me Sir Topham Hatt is very cross and points to the direction of the door, the line is from her favorite show, Thomas The Train. She knows it by heart and repeats the lines whenever she believes they are convenient, but otherwise she doesn’t really talk. Sometimes these lines seem to make perfect sense, but there are times when we don’t understand what she means, like the one in Finnish, stolen from the Moomin’s. She can stare out of our car window repeating endlessly that the ocean came back.  In sunshine, in rain, in the city, and in the middle of the woods, in the morning and after dusk; the ocean came back. I have always felt it meant she was happy. Downstairs I find my shoes as all of them have been organized in a neat lineup under our living room couch.

I believe the first time was when she was about one year old. We were having a play date with our baby friends and she had a tantrum over something. She was nowhere near the terrible twos, but tantrums were part of our everyday life. In the end, I took her upstairs and held her in our bedroom for a time that seemed like an eternity as our friends were entertaining themselves downstairs. Probably sometime around the one hour mark of her endless tantrum my friend Kate opened the door to check if we were okay and I burst into tears and told her bluntly that if I did not know better I would say my daughter was autistic. What made me say that, I have absolutely no idea, as to my knowledge autism was something very severe, a disability where there was no connection to the outside world, and we clearly did have a connection with this child. But I said it, and I will remember that sentence till the end of my life.

Eventually we sat in an office at Seattle Children’s Autism Center with her, and we became parents of a Special Needs Child. All at the same time, I was incredibly relieved, and filled with fear and sadness. Relieved because I was not an incapable parent anymore and everything I had been seeing wasn’t just inside my head, others could see it too, and it had a name – Autism. But we were in the beginning of a journey that I really had no map for, and within moments the ballet lessons were exchanged for early intervention plans, therapies and countless meetings at the school.

These are called PECS cards and we used these for years. Whether we were talking about the daily plan or going to the bathroom, there were PECS for everything. 

My journey was an easy one as it was marked by great insurance combined with a school district, and educators that were both willing and able to help. Within weeks she had started in her new preschool Ready Start, a free program offered by the school district. She spent four mornings a week in preschool, and her afternoons in the school district SNAPS program, a program offered by the district as early intervention for children on the spectrum. The little yellow bus picked her up in the mornings, and brought her back just before 3 PM. We did a variety of therapies, starting with speech therapy and ending with social skill classes and behavioral therapies. As said, we were blessed, as we had an insurance that covered everything we needed for her.

Most stories are not quite as beautiful. They come with tears and frustration combined with endless battles for things that should require no fighting. Most stories come with insurance carriers denying services that Washington State law guarantees for individuals with autism and/or school districts that don’t offer the services they should, or just flat out decide not to follow the child’s IEP (Individual Education Plan). There are parents at their wits end as they don’t know what to do, or where to find help.

This is where Washington Autism Alliance and Advocacy (WAAA) steps in. It is a non-profit organization with the mission to ensure that all children and adults with Autism Spectrum Disorders (ASD’s) & other developmental disabilities (DD’s) have every opportunity to thrive and become productive members of society. We do this by helping families access ASD & DD health insurance benefits, effective services in schools, and supportive community-based services, regardless of their personal financial situation.

I am extremely proud to announce a Community Partnership with WAAA. As a parent of three special needs children I greatly value the work they do in helping those whom need someone to advocate for them. Those whom are lost in the jungle of insurance policies or are financially unable to afford the care needed. WAAA does amazing work, and I am thrilled to be able to support them and to give back to the Autism Community.

Today, Mia has just turned 9. She still has her IEP, her very own plan for education. She goes to social group three days a week at school, but mostly she’s a happy 4^th Grader with lots of friends. Due to extensive early intervention services, she has grown to a young lady whom most people don’t even know has a disability.