Capturing life in words…
Josiah ran from table to chair, silent, other than some occasional monosyllables. He took the shiny magazines off the doctor’s end table and lay down on the floor, beginning his ritual. He lined the magazines up, creating a road of sorts. Except his mind did not see them as a road, or, as items with pictures in them. Autism had captured my son, and one of its’ manifestations was this uncontrollable impulse to line items up. Shoes, cars, cups, straws– never seen by him for their conventional use — but as items to line up. May children on the “spectrum” will line up items, like cars, versus playing with them. Or they will watch the wheels spin, but not drive them with the typical vroom, vroom engine noises. Spinning items fascinated him and we always had a flag on hand to wave in the air– this soothed and amused him.
I sighed and held back tears. Crying made a lot of doctors believe I was an “over-extended mother who was just overly concerned.” This, along with, “every child is unique” was wasting time my son needed to be gaining intervention, such as speech therapy, occupational therapy and special needs preschool. Early intervention for any disorder is very important. Friends who had not been blessed with the same employment history as I, beat themselves up for not seeing it sooner, yet autism is NOT our fault. As a species, we feel finding a place for blame reassuring, yet it rarely makes any difference. Take the awareness, move forward and look back only to educate others or provide medical providers with a history.
How did I know he was autistic so soon?
It was many things combined over time. He rarely looked at faces as a baby. Most babies are enchanted with the human face and as early as few weeks old will mimic us when you playfully stick out a tongue or make your mouth into a large “O”. My son was indifferent to this interaction.
Also, he was easily over-stimulated. Too much light for too many hours, noise was a real joy kill for him and he avoided human touch other than deep pressure. He was soothed as a toddler and preschooler by wearing deep pressure vests similar to this vest which is weighted., and provides a calming stimuli. (After approximately third grade, he no longer needed them, as we worked with him to soothe himself other ways.) Loud noises such as tornado alarms, being in a school bus (which is like a tin can filled with screaming children) or the sound of crying infants would send him into a frenzy of walking in circles, rocking back and forth or grabbing me by the arm for help.
The first issue which convinced physicians I was not merely “a stressed out mom” was when my son literally lost speech. He went from a vocabulary of approximately 150 words to two syllables, almost overnight. This sudden loss occurred simultaneously with rocking back and forth for minutes to hours in order to soothe himself. FINALLY the medical profession paid attention to my demands for evaluation.
Once given a label for my sweet son I did a few critical things:
I learned to dream new dreams. I used supports and grieved my old dreams of having the typical child, who would one day play football in high school. I accepted him and celebrated the beauty — even if it was him humming to the wheels of my car on the highway. I embraced this incident as bringing attention to small, wonders in the world I may never have noticed without his different perspective.
I educated myself and did not wait for the medical field to provide me answers. I marched in with articles and asked dozens of questions, coming from an informed parent. Hence, I did not put my child through a bunch of trials and trends, which were useless. I fired a few doctors and found the best of the best in my area. I caution when saying this– never do so in anger, and only after research and consultation with other professionals indicates the physician is not providing good care. Remember, doctors work for you and your child. If they are over-medicating, ignoring quality of life issues or dismissing troublesome concerns, get a second or third opinion. This is a human life, not what entree to serve at a wedding.
I do wish I would have done one thing differently: attended to my own needs and made sure on a daily basis my other two children felt loved. Now, a decade later, I can see this gap. However, all said, we are in a good place. So God filled in the gaps, where my lack of knowledge, money or time fell short.