To truly know me, is to know that I over analyze. Everything. Worry. About EVERYTHING. Ah, anxiety. It’s a real son of a bitch. When I became a mother, that anxiety became unbearable at times, until I sought treatment for my Postpartum Anxiety. That’s a subject I will open up on in the near future. I’m mentioning this now because when I started to notice milestone delays with my son, these observations got attributed to my anxiety initially. So I want to share my son’s journey thus far with autism, in hopes that it helps other parents to trust their gut instincts regarding their children’s well being.
My son was a little over two years old when my worries about his development really started increasing. Not only did he have an obvious speech delay, but a regression in his speech that began around 18 months. It became a huge challenge to get him to make eye contact. He would repeat high pitched soprano tones or the same word like “BEE” over and over. To the point it became hard to be in the same room at times. Often these sounds happen when he feels the need to chew on something, like his plastic sippy cups. No matter how many times he was told no, he was going to climb the highest piece of furniture. Hank’s inability to express himself began to really frustrate him, understandably.
To top it off, my best friend has a son Hank’s same age and he was talking up a storm at a very young age. He is an incredibly intelligent, sweet, and funny kid that I love to pieces. But it was just so hard not to compare his milestones to my son’s and wonder what I was doing wrong as a parent.
So many caring people tried to make me feel better by telling me not to worry, (sure, easy) and that Hank would be talking in no time. Even at Hank’s two year check up, his pediatrician said that although he Hank showed up on the lower end of the MCHAT test, he did not show visible signs of autism and that Hank was doing great. Another six months rolled by, and my son still wasn’t talking or showing any interest in being social with hardly anyone. We as parents, often had to work to get his attention or him to even make eye contact when trying to kiss him goodnight. His frustration from being unable to tell us what he wanted was frequent. He could not handle being around company more than a couple minutes before he became overwhelmed and hid behind the couch to lay down on his stomach and decompress.
I made another appointment with the pediatrician to ask about speech therapy options. When I told the nurse about my son becoming frustrated from not being able to express himself, she had the audacity to say, “OK! Well, the doctor will be in soon to figure out what’s going on so you don’t have a little Norman Bates on your hands”! I was so stunned by the ignorant and hurtful remark, that I didn’t say anything about the comment at the time of the appointment. The pediatrician referred us to an early education program which is provided through our county. It wasn’t until we started meeting with Hank’s speech therapist that I mentioned the Norman Bates comment the nurse had made and the speech therapist’s jaw dropped to the floor. She urged me to say something because it was not only the worst comment she had ever heard made by a professional, but she became concerned that this nurse would make the same extremely ignorant comment to other parents.
Hank was evaluated initially in order to be assigned an in home speech therapist. The women evaluating Hank were so kind and reassuring that we were doing the right thing getting Hank help so early on because he has a fighting chance to overcome many of his challenges while his brain is still developing. We signed Hank up for occupational therapy as well and started researching age appropriate sensory toys that would help his development.
The very first week of meeting with Hank’s speech therapist, she encouraged my husband and I to repeat the sounds Hank makes. We hadn’t been doing that because we didn’t know if it sounded like mocking him or if it would keep him from progressing with saying actual words. Turns out, repeating his sounds helps him to learn how to repeat our words. Within one week’s time alone, we could see a clear difference that Hank was making more eye contact and seemed happier. Just from simply repeating the sounds he made!
Speech and occupational therapy have been the best decisions we could have made for Hank. He is starting to mimic all kinds of words and is an all around happier and more patient kid! The first time I saw him play side by side with another kid his age, I cried. His speech therapist just smiled warmly and said “Cry away, we have all been there and huge milestones are definitely something to be proud of”.
Hank’s speech therapist has not only changed his life for the better, but mine as well. She shuts down my mom guilt. When I told her about turning in my mom’s abuser within a cold case (here’s THAT story) and that I blamed myself for feeling like I didn’t do enough for Hank to help his early development, she shut me down in the kindest way possible. She told me to look at my younger daughter and asked if I had done anything different in raising her. When I said no, she smiled and said that Winnie was proof that none of Hank’s developmental delays were due to anything I did or didn’t do as a parent.
By the time six months had flown by, it was time for Hank’s progress to be evaluated. We agreed to get Hank evaluated for autism as suggested. The ASD evaluation would be over the course of several meetings so they could see Hank at home in his element, around other children outside our home, and a final meeting to go over the results. Turns out, the same evaluators that met with us originally would be conducting Hank’s ASD evaluation. They were blown away at his progress and it was very cool to be able to see it in their eyes just how much they were pleased with Hank’s progress and touched by how much happier he seemed.
The results were exactly what we had anticipated. Our guy is autistic. Despite expecting those results, hearing it for the first time was overwhelming and emotional. For me, it was mostly because I FINALLY felt like my instincts were validated, as a parent. It’s so easy to listen to those around you and to your child’s pediatrician. Because why wouldn’t you, right? It is not easy to listen to your gut instincts above all else but I was so incredibly glad I did and that my husband fully supported me looking into having Hank’s development evaluated.
While the instinct and spectrum validation was great, the gravity of knowing our son was autistic set in. When you’re new to the spectrum, it’s the fear of the unknown that is the scariest. Would Hank ever be able to make friends? Will he be able to find love? A steady job? I knew so little about autism. Turns out, I, like so many people, I was incredibly naive about what it means to be on the spectrum.
First thing I did was research the best reviewed books regarding autism. The book ‘Neurotribes‘ by Stephen Silberman talks about the many awful ways that parents are blamed. Especially, mothers. It debunks the ridiculous refrigerator mom blaming and all the vaccination blaming. But the most life changing was learning about how autism is NOT an epidemic. It’s a whole culture of people that are just starting to become acknowledged and appreciated, at long last! The in depth research Silberman has done to show that some of the most brilliant minds from the last few centuries alone were/are on the spectrum was my favorite part of the book.
Researching autism to better understand my son, was so positively enlightening. But the thing my husband and I will never regret doing, was let our friends and family know. By being open and proud of Hank being autistic. Loved ones and friends offered their incredible support. Also, so many people I have never even met outside the internet have offered their support and suggestions from experience as well. The kindness of strangers has been so amazing and I’m grateful for you all!
We are so lucky to live in a time where people are talking about their mental health. Not to mention, that mental health has made incredible leaps and bounds the past couple generations in regards to studies of autism, mental illnesses, etc. Throw in the birth of social media, and how quickly word can spread within minutes across the globe, and it’s easy to see why some older generations think that autism became such an ‘epidemic, having never heard of ASD so frequently before. Until now.
My goal with this blog post, is in hopes that it encourages other parents to trust their instincts. Had I not had the same pediatrician growing up that my kids had, and knew that he had missed my recent ADHD diagnosis, I may have not have been as persistent so early on with Hank’s development. Had my mom not gotten a second opinion from a doctor, she would probably have died from a tubal pregnancy. Just throwing out different instinct examples. You guys get it.
Trust. Your. Gut.
Never feel foolish for double or triple checking your child’s well being. No matter how old they are! Ignore that awful parent guilt when it slowly creeps into your thoughts. Your concern for your children make you an incredible parent and you have my full support if you ever need it.