In The Blink Of An Eye

Categories: Parent Perspective

It seems like it was just yesterday. I can remember her lying on my chest during her first year. I stayed home with her that year. I can say that was most certainly the best year of my life.

Adalyn was my first born. I didn’t think about autism being a possibility. As each month went by though I would sometimes compare Ady to her cousins, who were about six months older than her. I noticed that they had reached certain milestones at the appropriate times while Ady was still working at them, but still the thought of autism wasn’t on my radar. She was such a good baby. Ady made eye contact.  She would sleep through anything. We went to restaurants often and she never fussed.  We read together every night.

I started to realize that she was starting to fall behind, but I guess in hindsight I was in denial. She would line everything up instead of playing with toys. She had no interest in using toys the way they were meant to be played with.

When her father mentioned autism, I thought to myself- no she’s just moving at her own speed. That’s not it. Even at the developmental pediatrician visit, what I was told hadn’t fully processed. We would read ‘My First Words Books’. She would point to pictures and say the words to match the pictures and then it all just seemed to go away. Words that she would say all the time disappeared.

We found ourselves on a wait list, as most parents do, seeking a diagnosis, but at that time it wasn’t clear what our future and an autism diagnosis would hold. When Ady was diagnosed at age 2 with autism and sensory processing disorder, we did everything we could to help her as quickly as we could.

She started early intervention, speech and occupational therapy, and ABA therapy in our home. We were involved in hippo-therapy, and participated in any community activities that were available through our local autism society.

Looking back, I had no idea how much autism would consume our daily lives. When she was younger it felt more difficult. I felt like the challenges were endless and that somethings she was going through would never improve. I felt like it took away from our time together. Some behaviors were difficult to overcome, but by reaching out to the right people we were able to get help. Everything from racing to attempt to get back the speech she lost, to potty training, to locking up everything-literally everything in our home from doors to windows to cabinets to the refrigerator.

Everything. Elopement was high on the list. I couldn’t leave a door open on a summer day or she would take off. She would attempt to climb out windows, and still tries from time to time. I constantly worried about her wandering  off and getting lost. Even today-that is my biggest fear.

As her 9th birthday quickly approaches, I look back at her pictures from when she was a toddler, as I often do. I’m in awe of her and how she captivates others without saying a word.

I know it may sound silly, but I try to look for the change. Trying to pinpoint when it happened.  Her facial expressions and eye contact. I watch videos and listen to words that she use to say. In the past I would get overwhelmed and saddened by those thoughts, but now I am at a place where I feel content. We still work at growth every single day, but I have piece of mind that it is who she is meant to be and that there wasn’t anything during pregnancy that caused it or anything I could’ve changed.

I see a young lady now who is thriving. She’s happy and healthy, which are the things that matter most. A few weeks ago she was invited to a friend’s birthday party. I of course wanted to go with and stay with her. I watched her with her friends and she didn’t need me right by her side. She was rollerskating, something  that she is very good at.  I was able to take a step back which is difficult because I always want to be by her side. She still needs my help with a lot of skills,  but she’s growing up. Her personality is shining through.

I feel more at ease. Mostly from the feeling that I know what to expect on most days. This doesn’t limit her growth potential, but I’m not consumed by worry or sadness of what she looks like compared to her peers.

It was enlightening seeing her around her typical peers, not knowing what is it’s like to hear conversations about school and friends and favorites at that age because of autism. The conversations they had and the things that were relevant to them. What I’m experiencing as a parent of a child with autism  is different and unique and I accept that. I wouldn’t want to change anything about her. Her quirks and sweet personality make her who she is meant to be.

Ady is coming into her own self. She is learning and changing every day. When people ask me “Is she talking more?” I say, “some days yes, depending on what motivates her, but that isn’t what’s most important”. What’s most important to me is that we provide consistent support for her to give her opportunities to grow and learn but also that she is just happy and healthy. She’s so smart. I always say that it’s inside of her just waiting to come out. Between her vocal communication (which is minimal), sign language, verbal approximations, and communication through the use of her speech device. I want to understand her and communicate with her the best I can.

We are blessed to hear her voice, even if it isn’t every day. She continues to amaze us.  I know there are going to be challenges, but together we’ve got this.

Susan Bitler
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1 Comment

  1. Beautiful story. Inspiring and hopeful. Our middle son who is now 7 has autism. He is in OT and ABA therapy, and has made great progress developmentally in the last year. Thank you for sharing your journey.


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