I admit it, I fully thought that my baby G was going to be my “normal” one. He slept well at night from day one. He did not live on my breasts which A did. He enjoyed being held but also enjoyed being sat in a bouncer or swing for periods of time. When we introduced solids he ate everything, anything. G was easy going, flexible, went with the flow. Opposite his brother, A, who had trouble changing from tasks. Where A loved and thrived on routine, G was kind of ‘whatever’ about it. The older G got the happier he seemed to be playing with noisy objects, something A could not tolerate. A played with Tupperware as a baby, quietly putting lids on and off, stacking them together, whatever. G wanted the metal bowls and a wooden spoon to pound on them. Just as you would see in a “typical” boy. Playing drums was surely in his future. Talking came on naturally, all be-it perhaps a bit slowly. But still, he had words and was adding to his vocabulary daily. Except Mommy. Of course, Dadda, common among all kiddos to say Dadda first. G never threw up the way A did after feedings, he never got sick in the car from motion, he was my easy baby. Turning into an easy toddler. Always determined, gets that from his Daddy, he would try and try to do what his big brother did. If he wanted something he would continually go for it until he got it, not to be redirected or distracted. What a great character strength!
I will never forget the day it all went away. First it was the speech, that I noticed anyway. Standing in our kitchen, our main hang out with hungry boys, G wanted something from the pantry. He had been asking for what he wanted in single word questions such as “milk?” “crackers?” etc. This day he stubbornly (or so I thought) grunted and pointed up at something in the pantry. I tried to pretend I did not know what it was he wanted, by this time very much used to encouraging words out of A through speech therapy. However, he refused then melted down. Never had I seen him, in my memory, just collapse in frustration like that. As if I was being mean by making him say what I knew he had the word for, he had asked so many other times for crackers, I could tell by his precise eye to finger, squint pointing, that was what he was aiming for. I picked him up and asked him to show me, he went right for the crackers, as I suspected. Alarmed at his reaction and refusal to speak I chalked it up later that night as a stubborn phase. Perhaps all the attention A gets with school teachers and speech was making him jealous. Maybe he wasn’t well, had a sore throat…something physical.
We all know that was not the case. I lived in that denial for a month or so. Then came time for A’s check up with his developmental pediatrician. I had concerns about A’s aggression at school, his constant frustration and meltdowns had escalated again as he progressed to a new classroom. We went and I fully expected there to be more with A. She agreed that the SPD (Sensory Processing Disorder) would affect the way he responded to things. I had done lots of research on the disorder and was way ahead of her, already seeking an ABA therapist out. I felt good she was impressed by my proactiveness with A, then she said, “and I would like to have G assessed.”
My heart stopped. I think deep down, I knew, I expected this, but my denial was so strong. My will for there to be one kiddo I didn’t have to lose sleep over, manage like delicate eggshells, navigate the crazy world of special needs with no map of where to go…
All I could do was stare for a moment at him. Then I asked why? Why him and not A? A seemed more “autistic” than G. Sure, he was being stubborn and not talking, but was there anything else that lead her to believe he may need to be assessed? And of course, there was plenty. G did not make eye contact once. Never responded to his name, even as she asked me to call for him. He was no longer speaking, for at least a month now, and all the other little things I had tried to bury and not notice. The sleep disruptions, the meltdowns, the general unhappiness my once very happy easy kiddo had had, was gone. He was quiet, withdrawn, very much a different kid. It was not jealousy, depression, changes in routines or absence of his brother being at home all the time. It was something bigger.
So there we are…we embarked on a long journey to diagnosis, took 6 months and a terrible experience with a child developmental psychologist, but we had the diagnosis we feared and tried so hard not to believe. Autism Spectrum Disorder.
This grief was not like the grief I had been working through with A. A was so capable, talking and continuing to hit his milestones, even if only just on time. A progressed, granted with help. We found an ABA therapist to help with his behavior, and it was helping. Things were getting managed and the future was bright for A. Perhaps it would be a bit of a struggle, being so sensitive to things and emotional, but nothing I could not understand or handle with some help. With G it was so different, so much scarier. He stopped, he regressed, he withdrew. He never fully attached to me the way A did, he always preferred his Daddy. Now it seemed he was further away. Unreachable. The more I read about ASD the more I tried to find hope. But it is hard with the materials out there. So many things about kiddos don’t match our experience, and if they match at all, so much of it does not relate. Each kid is different, after all. I understood the difference factor, the individuality, but these kids I read about had personality, were further into their journey than we were. I could not foresee G’s future, even a glimmer of what to expect.
Overwhelmed I completely melted down. It was not immediate, a few months or so, but it happened. The denial was preventing me from taking care of myself. Everything took (and takes) so long to implement, yet time is of the essence with these ASD kids!! I share this because I want others to know two things. First, it is OK. You are not alone no matter how much you feel that way. We are all alone together, which is crazy but true and also so reassuring once you find that out. Second, I hope to prevent others from the meltdown I experienced by sharing and emphasizing how incredibly IMPORTANT it is to take care of yourself!! Get therapy, talk to your doctor, share with a friend, family, an anonymous blog or private social media group. Whatever you can do to get a break, frequently. Get respite, a sitter, a cleaning crew to help out once a month or more. Yoga, run, exercise in any form. Watch a favorite show once a week, read a book routinely. Research!! Educate yourself about ASD or whatever it is you are dealing with.
Two things I will leave you with here…
Remember, on a flight you are to fit the mask to yourself first before helping others, including your children. And, people are afraid of what they do not know about. Knowledge is the light in the darkness. The more you know and understand the less frightening it becomes.
autstanding 