Starting Our Journey
Miles's pregnancy was the easiest of all three. Aside from an early hiccup we went virtually nine months without an issue. His delivery was quicker than the others and I only labored for about 8 hours. Delivery was briefly very scary as they lost his heartbeat for a time after my water broke, but they soon realized it was likely due to his position changing and not a medical emergency, and after only a few pushes he was here and healthy as could be!
He was by far the easiest to care for of all three of the boys in infancy. He slept through the night immediately. He rarely fussed and was easily entertained. He was the perfect 3rd baby (still is in my opinion ;) ). We could haul him to his big brothers' sporting events, and he was happy to entertain himself. Aside from some mild torticollis that corrected easily with changes in sleeping and feeding positions, he met all his milestones on time and without concerns. After two colicky older brothers, having a third baby without colic felt like a breeze! He was a good eater and really wanted to be independent with eating when he moved on to self feeding. I had just been promoted at work and was running my own clinic for a company I loved, a goal I had worked toward my entire career. Life was perfect. Everything had fallen into place as I'd hoped it would. However, we soon realized that while we may make plans in our hearts, it is God who guides our steps, and our direction was about to change.
There were a few moments during Miles' second year of life that had me concerned that he wasn't speaking as much as his older brothers had at the same age. However, when I would try to break it down and list every word he spoke, he was speaking just enough to make the normative value cutoffs. Around the age of 2 I felt that he had stopped speaking a lot of the words he once had, still wouldn't really call me mommy, and wouldn't follow my finger when I would point to things, just to name a few behaviors. If he wanted something, he simply got it himself. However for the most part, he rarely had tantrums and was a very happy child. Our doctor decided that I had been concerned about it long enough so she recommended a First Steps evaluation for speech therapy.
The First Steps process is very long and arduous for a parent who is anxiously awaiting answers on their child's well being. After several months of paperwork and waiting for a therapist to become available, we were told a therapist would be coming to evaluate his speech. I remember asking the coordinator how often parents get to this stage and it turns out to be nothing since he was the third boy and had big brothers to speak for him. She assured me that that scenario was a definite possibility, so we clung to that hope as we waited. We were shocked to learn after more than a month of waiting that instead of a speech therapist, a developmental therapist and an occupational therapist showed up to evaluate him. We were completely confused by this process and the evaluating therapists seemed confused as well. To this day I have no idea what happened, but what transpired likely sent us down the autism pathway much earlier than we otherwise would have, no matter how traumatic it was for me at the time.
The developmental therapist to me seemed on a clear path. From the moment she met Miles she was specifically searching for autism-like behaviors. My background as a physical therapist had me prepared that this may be a possibility. However, every time she would criticize the amount of eye contact he would make, the OT would correct her saying that he would make good eye contact when engaged. It seemed neither of them could agree on what was going on with him, but suggested that he start OT and agreed that he needed a speech evaluation (which was the only thing he was supposed to be getting evaluated for, mind you.) However, being a therapist and wanting what was best for my child, I agreed and we decided to start OT through First Steps.
Occupational therapy started and initially she seemed more concerned about feeding and oral motor skills (when his SLP finally was able to evaluate him a month later, she stated that neither of these were concerns related to Miles). We were beginning to notice around this time that Miles was beginning to have strong, but short lived, tantrums with transitioning between activities and also that he had some sensory seeking behaviors. Each week she would come in and spend the majority of the session talking to me directly or talking about her pregnancy, but she rarely interacted with Miles. I was frustrated, but since I was not an OT and did not work in pediatrics, I trusted the system. After two weeks she stated that she believed Miles had sensory processing disorder. Of course this mama went straight to the internet to determine what this was (that was a big no-no) and was bombarded with information indicating that my son would grow up to have drug addictions, difficulty maintaining a job or relationships, and pursue risky thrill seeking behaviors (the internet is the worst place for a scared mom). After a good long cry and a week of getting myself prepared, I was ready to tackle his diagnosis.
However, the next week the OT returned and a similar pattern emerged with the treatment session, but at the end of the session she declared that my son had obsessive compulsive tendencies and she believed he had obsessive compulsive disorder. Knowing several people in my life with this condition, I knew that this condition can occasionally completely disable them and needs constant care and control. Back to the internet I went, fear set in, a good cry was had, and again I prepared myself to tackle his newest diagnosis. The same pattern emerged the following week, but this time the OT determined that he likely had ADHD/ADD. At this point I was becoming emotionally and mentally exhausted, but again began research and within a week felt ready to tackle his most newly suggested diagnosis. The next week arrived, and again the majority of the session was spent without direct interaction with Miles and the concluding observation was that the OT would be "shocked if Miles wasn't on the autism spectrum." In the end she was right, however her delivery week after week was too much for this mom and I broke.
There it was. The words I had been afraid of since my oldest was born. Autism. I was terrified of this word, as if the word itself had power to destroy my family, to tear away the dreams that I had for my son. After all, I am a physical therapist and I thought I knew what autism was. The children that I worked with when I was on a pediatric rotation had pretty substantial disabilities related to their autism, and that was the frame of reference I was now using for my son. I was half in denial because Miles didn't fit the mold in my mind for what autism looked like, and half scared out of my mind that my child would never be able to live a happy, successful, independent life if this label stuck. I didn't grasp at this time the true meaning of "spectrum" and was automatically applying a worst case scenario in my head. At this point, my emotional overload was complete and I broke down. I did something completely out of character. I, the woman who never ruffled feathers and refused to send food back in a restaurant even if it wasn't what I ordered, asked for my son to be removed from his OT's care. I did have a fleeting moment of guilt over it, but in the end decided that Miles needed to be in an environment where he was being treated to make gains toward his goals, and where he and our family were being supported. I set him up for continued OT with the wonderful therapist who worked in my clinic, and she was able to make progress in the first visit that his initial OT had not made in 8 weeks. She was loving, caring, and supportive. She was also quick to encourage me not to jump to conclusions until we had a full picture of what Miles was capable of and where his struggles were. I was given activities to work on at home, books to read, and constant encouragement, and began to watch my son really start to grow for the first time in months. I had just made the first big decision as Miles' advocate and so far it was paying off. Our journey was just beginning, but big changes were already happening.
As his mom, you did the right thing! You saw that the original OT was not engaged or invested in Miles and what he needed and you found someone who was. It's amazing that first lady is an OT, I don't see how she can be a successful one considering how quickly she jumped to conclusions and how little she actually interacted with her patient.
ReplyDeleteI'm sure this blog will be a great source of information and comfort for other families who are going through the process of having children or family members who are not only on the spectrum, but who are have other issues as well.
Love you and keep it up!
~ Audrey