The Journey Continues

 

  The next several months of our life revolved around weekly OT and speech therapy appointments. All of this was happening while I was managing a PT clinic and working 50+ hours a week. The strain was really beginning to take a toll on us as a family. Aside from the constant busyness that our schedule was providing, more concerning behaviors were coming to the surface. His emotional outbursts were not on the same scale as an age appropriate temper tantrum, and we were beginning to see him have real meltdowns, some lasting close to an hour. As his mom, they were scary to witness, and there was little that I could do to console him during these times. Often I would end up crying with him.
     As a family it had been a tradition for us to go out to brunch on Sundays after church, but Miles was becoming increasingly more disruptive and struggled to sit still for a meal. His food choices were starting to narrow and rarely would he eat when we were out. Often either Jason or I would have to leave the restaurant with Miles while the rest of the family finished. We eventually had to stop going out to eat all together.  The obsessive tendencies that the first steps OT had observed were really there and began to intensify. At the time it was letters and numbers. We could not go anywhere without having a puzzle with numbers or at least a piece or two in his hands and when they were taken from him, long term meltdowns would occur. In a store he would stop in front of signs until he had adequately enjoyed every number and letter on that sign before we would be allowed to move on.  Also he would literally not stop moving unless he was asleep. We could not take a single picture of him without a body part being blurry due to him moving constantly. He stopped sleeping well at night even though he had been a great sleeper since birth. We were now reaching the point where we were both mentally, physically, and emotionally exhausted and were losing stress outlets as a family as we were starting to have to limit our trips into public places.
  Miles finally aged out of First Steps, age 3, and we were advised to continue speech therapy in the local school system. At our evaluation, my first question to the therapists was whether they were concerned that he had autism. They said that they could not determine that from one meeting and encouraged me to be patient and see how he progressed. These people would end up being a major source of strength and comfort for me, and a group of genuine saviors to my family for almost 3 years, but more on that later. Miles began to make good progress with his language skills with speech therapy in the school system, but his behaviors were still getting increasingly more disruptive. At his well child check, our doctor recommended an evaluation with a pediatric neuropsychologist and with a geneticist. We had to wait several months to see the neuropsych, but was able to get into the geneticist pretty quickly. She did a very thorough exam and felt she could rule out conditions such as fragile x and chromosomal abnormalities. She did a test for autism as well, but noted it was inconclusive, he showed signs of autism, but not necessarily enough to quantify as autistic on her test. At this point we were in the same boat, some signs of other signs not. The difficulty with this was that it was giving me hope that it was something else, maybe treatable or maybe he would outgrow it. Hope was both a friend and an enemy at this time.
     Finally we were able to see the neuropsychologist. At this point in time, the speech therapist had begun to see enough behaviors that she was recommending Miles be placed in the developmental preschool, and the neuropsychologist evaluation would supplement this decision. Miles underwent a 3 hour battery of testing, then a 30 minute observational test. The psychologist sat across from us and said the words I had been so afraid of for so long, "Miles is on the autism spectrum." I knew these words were coming, but actually hearing them opened a dam I though that I had built strong enough to handle any flood, but this diagnosis was stronger and the tears flowed freely in front of a woman I had just met. She asked me if the diagnosis came as a shock to me. The truth was, I knew it all along, but now I had lost the deniability and had to face the fact that our future was going to be defined by this diagnosis. Once autistic, always autistic, there was no alternative. I was ready, but I was not ready. I was grieving the loss of the future I had envisioned for my son and the grief was so painful that it felt like I couldn't breathe.
  Jason and I somberly walked to the car with Miles and decided we were going to have to figure out where to go from there as a family. We were handed a large packet of information on resources at our disposal. ABA therapy was recommended. When I looked into it, our insurance did not cover it and the cost was going to be more than I made in a year if we pursued the 40 hours a week that was recommended. Thankfully he had already been accepted in the developmental preschool and was able to get much of the same care at this school that he would have had  at an autism center. Jason and I wrestled with the question, do we tell people that Miles is autistic or do we wait and see if the behaviors improve? In the end, there was no choice, Miles is autistic and we needed to embrace that in order for him to be able to get the services that he needed to succeed in life. Miles was not something to be ashamed of, or to hide from the world. We decided that we needed to advocate for him and help the world to see him for who he really is. So the mantle of "Autism Advocate" was taken up and the journey continued, for it wasn't really beginning with the diagnosis. I had already been an autism mom for several years at this point, but now I knew it. Our journey hasn't all been a struggle, but the struggle is real and should be made known as well. It doesn't diminish who Miles is, but helps to paint the full picture of how far he has really come.