Moms, do you remember that feeling right after giving birth checking every inch of your baby to make sure all 10 fingers and toes were intact and that everything looked "normal"?
Well, I remember it clearly. I think its a feeling that never really goes away, the desire to know nothing is wrong your child. I believe it's a feeling that transcends over the years as you watch them grow up.
I remember the way I felt when I would receive these monthly emails from this child development website I had subscribed to, stating milestones my child was supposed to reach at that age. I eventually stopped reading them because I didn't want the constant reminder that developmentally, my kid was not doing the same things are others. It's a hard pill to swallow, accepting that things aren't progressing and watching your hope start to dwindle. Fear creeps in. Is it me? Am I not doing enough? Did something happen during pregnancy or labor that could have caused this? Thoughts can be irrational sometimes, you look for blame when things are out of your control.
I noticed Miles was delayed in his speech pretty early on. Around the time he was 18 months, we had a regularly scheduled pediatrician visit. She asked me some general questions which Miles was doing fairly well in meeting those milestones. However, when it came time for speech the question was, "Does he say about 10-20 words?". I shamefully said no he only says about 1-2 right now. She insisted that we give him more time and reinforced that all kids develop differently. Two months later we were in the same boat.
By 20 months, we received a referral to early intervention. I called and called and called, left messages, called some more and did not get a response. By 22 months, I received another referral to a rehab center in the Bronx for children with developmental delays. At this center, we met with a social worker who sat and played with Miles for about 45 minutes. What she told me afterward I don't think I was prepared to hear. Along with a speech delay, she identified that he would not make eye contact with her or me, no sharing of excitement, delays in social interaction, and a few other things that are still a blur to me. I don't think it was what exactly she said that bothered me. It was that in 45 minutes a complete stranger had figured my child out and pointed things out that I was completely oblivious to in such a short time. In my mom brain, I couldn't rationalize that despite this being her job to find these delays, I felt like she understood my child better than I did.
In the 2 months after this visit, a couple of people came to our home to evaluate Miles. There was a speech therapist, a behavioral therapist, and a psychologist that all came and eventually met to discuss their thoughts. These evaluations were to be put into a packet and sent to me for approval. I sat down one evening to look at the packet the day it came in the mail and I was surprised by how it made me feel. I figured I had come to accept the idea over the last several months that we were in the processing phases. The packet was seriously over 10 pages long of evaluations. What stood out to me on the top was diagnosis: autism. I think that even though I expected this, seeing it so clearly labeled on a paper with my son's name next to it made it inherently real. They went on to say words like severely delayed, >33% delays in multiple areas, poor socialization, and a laundry list of things he does not do. I understood this evaluation was to highlight areas that Miles was lacking in but as a mom, I felt frustrated thinking what about all the things he does do?!
I think what bothered me the most was that David and I put so much effort into making sure we do plenty of activities with our child. Whether its play places, gym class, museums, shows, and even at home, we spend a lot of time making sure Miles enjoys himself. We would honestly do or pay anything to see that toothy smile and hear that laugh. On the other hand, there are parents that don't put in 25% of the effort we do, that have children that develop normally. It's not an easy idea to accept but such is life.
So that feeling was back. That fear that things weren't "normal". David and I spent many nights talking about this. Understanding our feelings and allowing each other to express emotions about having a child labeled as autistic.
In October, Miles began receiving what's called applied behavioral analysis therapy for 4 hours a day, 5 times a week. Along with speech therapy for 1 hour a week. After services began, I started to see how positive this would all be for him. In just one week, I kid you not, I saw improvements. Two months later, my child is starting to speak, play with us, makes eye contact, and is so lovable that my heart feels like it could explode at times. His therapist is such a wonderful lady with a huge heart that I know Miles has made his way into. The genuine connection they have cannot be forced and only comes from someone who is truly dedicated to their job.
Here they are playing together.
I've been wanting to share this part of our story for a while now but have not had the time to sit and write it all out. If you get anything out of this its that, my child is different in his own way whether you chose to label it or not. It is not something I wish for him to grow out of or to suddenly become what's considered a "normal" child. I want him to be unapologetically himself because he's surrounded by so many people that love and support him just as he is. At the end of it all, he's perfect to me.
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This was the first day we heard him saying these letters and this was this past weekend. Honestly, I cried of happiness watching how excited he was and how engaged he was with us.
*If there's any parents out there that are concerned or wanting more information related to our story please feel free to reach out