The beginning

Where to start?

I’m a mom. I have two little boys. Chris (pictured above) is nine and Alex is five. They both have Autism Spectrum Disorder or ASD.

When Chris was diagnosed, I didn’t tell people. Of course, our closest friends and family knew but it was a very small circle. Looking back, I’m not entirely sure why. I believe it was partly to protect him, partly because I was in denial, and partly because I didn’t really understand it.

When I finally did start to open up, I was surprised by the people that reached out. I realized that I could help people just by talking about my experiences. I was contacted by other parents in the same situation. Concerned parents also contacted me about their own child and wanted to know how I knew. So that’s where I’ll begin.

How I knew

When I was pregnant with Chris, three of my friends were also pregnant. Our kids were born within about 4 months of each other. My friends were always posting milestones on Facebook…sounds, words, walking, playing. I was frequently wondering “their child is doing this, why isn’t Chris”? I just told myself that children develop at different rates and it would be fine.

The truth is, deep down, I did know that something wasn’t quite right. I’ve been around kids. I knew that he was “behind”. But I wasn’t willing to admit that, even to myself.

The pediatrician also expressed concerns and I blew that off too, mostly because I wasn’t a fan of hers. During our well visits she would go through the development checklist. If he didn’t do something on the spot, she would say he can’t do it. Even if I told her that he would do it at home. We changed pediatricians. Our new doc had the same concerns. I was deep in denial BUT, I took his suggestion and contacted an organization called Early Start.

What we did

Early Start is a state run organization that provided speech therapy to children up to the age of three (after that its covered by the school system). I called them and set up an evaluation.

The evaluation consisted of 4-5 people asking a lot questions and observing Chris. They watched him play and they interacted with him. Then we all sat around my living room while they discussed the results. This was one of the hardest moments of my life. They talked to each other as if I was not in the room. The analysis consisted of all the things he wasn’t doing, and should be. And all of the things he was doing that he shouldn’t be. What were these things?

Well, he wasn’t talking. He didn’t use eye contact or interact with people. He preferred to play by himself. If he was playing with cars, he would line them up instead of driving around. He loved to roll balls and spin them. He didn’t do any pretend play like talking on the phone, or brushing his hair.

I stopped them to ask a question and as soon as I opened my mouth, I burst into tears. The only question I could ask was, is this my fault? Am I a horrible mother? Did I do everything wrong?

Now what?

We set up speech therapy through Early Start. They came out once a week to work with Chris. We also worked on getting an official diagnosis. Once we had that, we were able to set up Applied Behavior Analysis (ABA) therapy for him as well. He attended a center 3 times a week for 3 hours at a time.

This was intense and can be overwhelming for kids (and parents). But Chris took to it fairly easily. Most days he worked hard and we started seeing progress almost immediately. The therapists that worked with him were amazing! They loved my kid and celebrated the little wins like he got an Olympic Gold Medal. It was a blessing to have such support.

It took a long time for me to really get past all those questions and doubts and realize, this was just the way things are. Chris was not a typical kid and that was ok. I have one prevailing thought when it comes to my boys, and I do my best to live by it. I don’t need to change them to fit into the world, I need to change the world so that they fit.

Side Note

The CDC approximates that 1 in 44 children are diagnosed with Autism. Let’s look at that for a minute. DIAGNOSED! That means there are countless others than are undiagnosed. There are several reasons for this.

Some parents/guardians may be in denial, just like I was. They may be scared of knowing the truth because of the stigma surrounding a diagnosis. There are others who may not be able to afford the testing. Still others may be in foster care or other vulnerable populations where it just isn’t recognized or is ignored altogether.

If you’re a parent or caregiver to an Autistic child, I see you. If you think you may be but are scared to find out, do it! Early Intervention is so important. They can diagnose as early as two years old and there are so many options for assistance. Take it from me, fear or shame or pride will only hurt your child. We could have started the process earlier and, as a result, seen progress earlier. You are the voice for your kids when they don’t have one. Be their advocate!

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