Tuesday, April 2, 2013

Blue to you!

Today is autism awareness day.
I know that if you are reading this, you probably know that.
If you did not know that, that is why so many people are wearing the color blue today.
What you may to know is that our family has been through the autism roller coaster, and we are in line for another ride.

When our oldest Caleb was born, he was a joy. He liked puzzles, and shapes and colors, and he talked like any other child.

By between eighteen months and two years, Caleb stopped talking. He would point, and use animal noises, but most of his talking was not understandable. He did not care to communicate.

I talked to his pediatrician, and her advice was to give him time, maybe it was normal. Well, I fought that pediatrician for two years, and she "gave in" and gave us a referral to the neurodevelopment center at our children's hospital.

After the slew of evaluations, it was decided that Caleb had something called sensory integration disorder. (SID) sensory integration disorder or dysfunction is when the sensory input your body receives is not processed appropriately. Imagine that your nerve sensitivity in your skin is turned up 1000 times. Everything that you touch, smell, taste, and hear is amplified, and it makes it unpleasant to say the least. Well, there is therapy to try to teach your body to respond appropriately to that input, however, insurance does not cover it for more than so many appointments a year ( far fewer than Caleb needed). So, I talked with his therapist, and I learned how to help him. Sensory integration disorder in and of itself is not a diagnosis on the autism spectrum, however, many children who have or develop autism have sensory integration issues.
This made insurance hard, because without an autism diagnosis, he did not qualify for a lot of services. I never wanted a diagnosis, I just wanted my child to be able to function in society, and the family.

With a lot of work, Caleb progressed nicely, and honestly, I realized how important therapy can be for any child. I wished he could have continued with therapy, however, he couldn't and we work with that.

Well, fast forward to today, we are going through a re-evaluation for Caleb. I will not get into the specifics right now, Because I do not feel comfortable, but I will say, I have had my day of tears over it, and we as a family are moving forward.

If you ever wonder about your child's behaviors, diagnosis, or progression/regression in their development, do not hesitate to talk to your pediatrician, and if they do not seem receptive to your concerns, take the time to document what you see, be reasonable, do not scare yourself with Internet searches. Find a doctor that is well respected, and get a second opinion.

You and only you can be your child's advocate, and you are the best advocate your child will ever have.

If your children are "typical" and there is an opportunity, please, teach your child that just because a child is "different" from them, it does not make them less of a person.
My child is teased daily, because he is nice and naive, and I am grateful he has one good friend, but it still kills me that he has to learn the harsh realities of life so soon.

Thank you to all of you whom have been my rock through everything we have been through as a family, know that you are appreciated!


  1. Found you on the MOB FB page. Looking forward to reading about your family.

    1. Welcome! I look forward to sharing with you!

  2. Replies
    1. Thank you! I feel the same way towards you!