Early Testing – Autism Awareness Month

DSC_0325Three years ago I started a process for Gavin that I thought only involved a simple speech delay. My beautiful 17-month old baby boy wasn’t communicating at all. In fact, he had regressed in speech and stopped cooing and making sounds altogether. I wasn’t overly worried or concerned at the time because Kendall also had a speech delay. After three months in speech therapy she started talking and communicating with us. I thought that was the same path I was going down with Gavin.

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A month later we finally had our first speech therapy appointment; coincidentally with the same SLP that worked with our daughter. At the conclusion of the session she calmly asked Doug and I if we had ever considered an autism screening for Gavin. We were both so caught off guard with this question. I distinctly remember asking her why she didn’t think his delay was similar to Kendall’s.  She reminded me, that even with Kendall’s limited speech, she spoke with her eyes. She had an amazing way of connecting with people without needing words. Gavin was different. He didn’t respond to his name, he didn’t look people in the eye, he didn’t know how to play with toys; the list went on and on. Everything she said resonated with Doug, but I didn’t want to believe that this could be happening to our son. I wanted to wait three months to see if he would start talking like Kendall did when she was his age.

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Photo credit: http://www.momtrends.com

Everyone I spoke with about not wanting to get him tested supported my doubts. People continuously told me boys talk late, he’s too young to be tested, and that he didn’t look like a child with autism. We had our easy way out at every turn, no one would have doubted us if we didn’t get him tested. However, we knew better. Our guts knew better.  I spent a week monitoring all of his spectrum red flags and by the end of the week I not only agreed with them, but noticed more. I think the moment I realized he had to be tested for Autism, was actually more difficult than hearing the results. You see, in the moment of deciding to have him tested at 19 months old, I already knew what the diagnosis would be; the rest was just a formality.

At 23 months old, Gavin started receiving services in our home. He spent a little over a year having 30+ hours a week of lessons that focused on daily living skills, social skills, play modeling, OT, Speech, and music therapy. At the end of the 13 months of home services I saw so much progress. Gavin still barely spoke, but he was communicating through story boards and limited sign language. He had learned how to play with toys and respond to choices. He was even finally starting to learn how to parallel play with his peers. I didn’t want the services to end. I loved his therapy team and with his limited vocabulary I didn’t think he could handle a classroom setting. However, I didn’t have a choice. Gavin had aged out of the state supported services and we had to enter him in the public school system at the young age of three.

After multiple evaluations were performed by varying administrators, at his new school, it was determined that my three-year-old son was functioning at the level of an 18-month old child. No parent in their right mind would send their 18-month old baby to preschool, but that was essentially what Doug and I were doing with Gavin. I cried every day thinking that he was going to fall more behind.

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I convinced myself that he was thriving because his team knew him and because he was comfortable in our home. What I didn’t realize was all the work they had done with him in our home allowed him to be successful at school. Without that year of home service, he wouldn’t have entered at an 18-month-old level, he would have had a more severe gap in age. Our early testing allowed for him to be able to enter preschool with an understanding of peer to peer play, storyboards, flexibility, and schedules. I was just too scared to see that at the time.

Fast forward to three weeks ago; I was scared again. I was too scared to see that Gavin moving into the inclusive classroom was a good thing, scrap that an AMAZING thing. My son was going to a classroom with typically developing peers. On the flip side though, Gavin was leaving an environment where he had eight teachers for eleven students; those ratios are incredible. I was afraid to have him be without that constant support in a new classroom. I was letting my fear blind me from where he was in his development. After a week in the new classroom, Doug and I met with his former teacher and new classroom teacher and they both beamed with excitement as they spoke about him.File_001

His former teacher shared how difficult it was to let him move on. Not because he wasn’t ready, but because she wasn’t ready to let him go, but she too knew it was time.

His new teacher went on to rave about his transition. She spoke positively about his interaction with peers, his desire to fit in and his empathy for other students.  That’s right his EMPATHY!!! My child who had no idea how to play, let alone how to play with others, was now connecting with peers through empathy! It was hard not to cry tears of joy in the meeting.

That same week, Gavin ran out of bed one morning and asked me, “Mommy is today Thursday?” I told him yes today was Thursday and asked him why he wanted to know. He looked at me and screamed with joy, “Today I’m the daily reporter!” This is a moment that will stick with me forever. It’s the moment I realized how “typical” Gavin had become. He shared similar excitement to that of other four-year-olds. He knew being the daily reporter was a big deal and it was something he should be excited for and proud of.

In every one of these scenarios I was scared, but I never let that fear take over. As we approach the month of April, Autism Awareness month, I wanted to write this post to remind parents, once again, not to allow the fear to guide them.

I don’t regret any of the decisions we have made with Gavin’s therapies and schooling. Each scenario had its own unique challenges and were difficult decisions to make at the time. The most difficult decision was easily at the start, which was debating about whether or not we should have him tested for autism. However, looking back, I know that having him screened before his second birthday has made all the difference.

I am an advocate for early testing and early intervention. I hate to think where Gavin would be today if we had waited even six more months to have him tested. I’m so grateful that I don’t have to wonder and get to enjoy every moment of his exciting and remarkable development. I hope other parents follow our lead and test early if they have similar concerns or are witnessing the spectrum red flags.

 

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