I originally wrote this for Health.mil in April of 2009. Autism Awareness Month is here and I just wanted to share again along with a follow up to what our life is like now.

Autism and my family: Part one

On April 7th, 2002, my family’s lives were changed forever. We had just had our second son, and our adventures with autism would soon begin. My second son was different from his older brother, but I wondered how different could brothers be? I knew enough that no two children were the same, but my mother’s intuition told me something just wasn’t right.

From the time my son was about a year old, I was constantly telling the doctors I was concerned about his development, but they wouldn’t do anything. The doctors kept telling me he’s ok, he is developmentally on track, and boys talk later than girls. I couldn’t I get a doctor to listen to my concerns. I was concerned about more than my son’s lack of speech. At two and a half he lacked speech, did not like being touched, was not affectionate, would not look you in the face, lined things up, had no fear, and wouldn’t respond to his name. It wasn’t until I changed my children’s primary care manager that I finally had someone listen to me and tell me that my son was different. Soon thereafter a pediatric neurologist diagnosed my son with pervasive developmental disorder (P.D.D.), or high functioning autism. My suspicions had been confirmed now and it was time to figure out how to help my little boy.

The one thing that has helped my son the most is therapy. He receives speech, occupational, physical and ABA therapy in school. He receives additional speech therapy outside of school. He would receive other services but in our area service providers are few and far between. At home we do a lot of repeating, constantly saying “use your words” and modeling. Practice makes perfect, right? With therapy my son has gone from being non-verbal to having fifty percent speech intelligibility at seven years old. His skill level is improving as well. He is developmentally at the same level as his five year old brother. It takes time but when you see your child doing or saying something new it is the best feeling in the world.

Routine is very important in our house. We have a schedule taped to the fridge and rules taped to the walls. If we need to break from the schedule without thoroughly explaining why in advance, meltdowns occur. Meltdowns are not fun, so if you can figure it how to avoid them, you do. My son gets anxious in crowded places and starts humming jingle bells, a song I really do not like anymore. He may even bust out with a funny dance too. He doesn’t play with other kids, only near them. He doesn’t understand the difference between doing something on purpose and what an accident is, no matter how many times we explain it to him. I can go on and on, the list seems endless. Things that are normal to me would puzzle most people.

My son, like other children with autism, has his “quirks,” and no two kids with autism are the same so what works for one child may not work for the next. As parents we learn what we can do to improve the quality of our child’s life. Above all we learn we are our child’s number one advocate, if we don’t fight for our children who will?

Curious about our life with Autism 6 years later? Read: Autism and our Family: Part Two.

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