Friday, April 1, 2011

April is Autism Awareness Month...

Today is April 1st, and not only is it April Fool's Day but it is also the beginning of Autism Awareness Month. This is something very near and dear to my heart for several reasons...#1 being my oldest son, Caleb.
Before having this remarkable child, I worked for a non-profit agency called BACH ECI, an Early Intervention organization that serviced our county. You can find out more information on them at I say "them" because I no longer work for them since I quit to stay home, but count those 8 years working there as some of the most difficult and inspiring and eye opening years of my life. My official title was Early Intervention Specialist/Developmental Specialist which was a fancy title for teacher. We were the ones that the therapists gave to us to work with weekly on speech and language, cognitive skills, reasoning, sign language, PECS, oral motor, name it.

How blessed I was to have that job because a few years into my career there, I not only had a new baby
but I was receiving a ton of children with Autism. Day in and day out, I was working with families on their personal struggles with their children and how they could make their lives better. I didn't know then that my life would mirror theirs.

Caleb is one of those fence rider children. He was incredibly smart and hit most of his milestones early, but when playing with others, you could just tell that something was different with him. Not to mention the fact that he only echoed language back to you, gagged and threw up if he smelled something he didn't like, hummed constantly, could not wear certain types of clothing, only wanted to wear long sleeves and long pants, was obsessed with things that rolled,
didn't want to be touched unless it was his idea and unless it was very firm (light touch sent him into a meltdown), was constantly wired, was ritualistic, obsessive, didn't potty train until he was 4...He was sensitive to EVERYTHING. Things you would never think about as an adult were driving him insane. He didn't sleep, didn't eat, tantrumed frequently. If the sun hit his face in just the right way, if there were too many people, if the toilet flushed, if a car honked, if a grain of sand at the beach got on his foot so he couldn't get out of the car....his whole day would melt.
I couldn't leave for work without him screaming and going through this ritual until he felt comfortable.

"Bye mom, I love you, have a good day, see you soon, I love you, have a good day, see you soon, I love you, have a good day, see you soon....." screaming as he ran to my car from my mom's arms. Every day I would show up to work frazzled, on the verge of tears and had to pull myself together to counsel other people on their similar situations.

4 years old was the worst. He was old enough to be in Pre K and was the most disruptive child in the class. But he was reading and writing, completing puzzles, and academically very far ahead. His behavior was more than I could handle and after spending 10 hours at work...I felt like I was dying. Thank God for my co-workers who were always supportive and had great ideas to help us. We started him in therapy and began the long road of testing.

By the time he was in Kindergarten, while everyone told me to be prepared, and I knew it in my heart, he was diagnosed with Autism. They told me it didn't really matter where he fell on the spectrum because their treatment and therapies would all be the same.

From our countless hours of OT from ages 2-5, we had figured out many things that would work for him. He was allowed to change into whatever clothes he wanted when he got home from school, he was brushed, he was spun, he was compressed, he was as regulated as we could get him. We found him drawing out his emotions and communicating with us mainly through writing or drawing. The combinations of what I learned at BACH, his teachers, therapists, and countless hours of prayer to God was working for him.

Caleb will be entering 3rd grade next year, mainstreamed, with social support and speech therapy. He has made INCREDIBLE progress.
I quit my job 2 years ago to help maintain a sense of routine and stability for him at home, and to help at the school as much as possible. He has bonded with me in a major way, and I am able to get through to him often when others cannot. In many ways, I forget that he is different because I see him all the time, and our home life is centered around modifications for a child with Autism. I hadn't allowed myself to think of his deficits until his birthday party last weekend when it is obvious that his peer group is quickly leaving him developmentally behind.

If I sit and think about it too long, it breaks my heart. If I think about how others may be treating him now that they are realizing his differences it will weigh too heavily on me. I am making a conscious effort to focus more on his progress...the things neurotypical children take for granted. I am a constant work in progress...Caleb has taught me that. I have to change my outlook to give him the best chance possible. Too often I am quick tempered when he begins to lose it over something I think is too small to worry about, or something that I think should be second nature. Caleb is going to have to work twice as hard for the same results as the average child. And as his parent, I am going to have to work three times as hard to help get him there. He is worth it!


  1. Thanks so much for stopping by and visiting my blog! I really appreciate your comments. I don't own a Silhouette either so that makes two of us! LOL!

    I'm glad your son is doing much better and I can honestly say I know how you feel. My son is 9 and is also named Caleb! We went through a lot of the things you experienced with your son. Therapy, Psych Evaluations, etc. Although he wasn't diagnosed with autism, we heard that term a lot when he was younger. He is doing so much better now and I am so thankful for his progress. Wishing you and Caleb the best!

    Ps. Your music playlist rocks!

  2. Wow. What an amazing and honest post. Thank you for sharing this. I'm happy to hear that Caleb is doing well and even though his peers are pulling ahead socially, I hope he comes into his own and finds his niche. (Like any other kid.)

  3. What a touching and well written story.