There was a time before Autism became a part of our lives. A time when my oldest was speaking single words here and there, but he was a “boy” and that was ok. My youngest was an infant and a contented little guy. Easy in comparison to our “high-need” first-born. Where A. needed to sleep sitting up until he was almost 1, and on my chest at that, often with a boob most of the night…G. did not. G. slept like a “typical” baby. He even took a pacifier rather than my breast to soothe himself between feedings. G. did not suffer any reflux problems and was generally quite content and easy to please. In short…I remember thinking…YES! I got an easy one!! I deserved it after all the sleepless nights I had been enduring with A. The amount of clothing we went through for each time he had thrown up between feedings…I’d say it was spit up but really, it was more projectile than that. The thing is, with A., he was my first and the only baby I had ever truly known before him was my little sister, who had lactose intolerance and often spewed as a child. I did not know any better. Furthermore, A.’s pediatrician did not seem concerned as he ate plenty and was in the 90-100% for his weight and height!! He was born big and stayed big. No malnutrition to worry about with him. G. also was a good weight and height. So other than the “high-need” part, everything seemed fine.
Good friends of ours called A. “Deedles” because their little girl, born two days apart from him, was speaking sentences while A. only said,
“Deedledeedledeedledeedledeedle…”
I was an attached parent for both boys which was a lot of work but felt like the only way, the most natural way, for me, to parent. Again, I was so grateful for the baby being easy, as I was still needing to sleep with A. between us and G. was in a makeshift co-sleeper made out of his cot with a second mattress added. A. slept more or less intertwined with me, G. slept alone until feeding or nappy change time. This all worked fine. Eventually we even got A. to sleep in his very own big boy bed, as long as we helped him fall asleep first.
We had some great times, snuggles with A. and special outings to the bookstore where A. could play on the train table for a bit, then we would find a new book together. He loved our special chocolate milk treat at the end. G. would be happy in his pram. A. loved going to the park! He loved the swings and I would have to push him for what seemed like forever, but that was great as it was easy and he always had the best smile swinging. We would swing for so long I often had to stop once he turned pale as he got motion sick. After recovering we would have a picnic in the back of the car. Too cold yet to sit on the grass and anyway, A. loved this routine and special time he got to sit back there with me.
My sister lived with us. Three glorious years!! She was there for my first baby birth and there for number 2. Both A. and G. had her there as another nurturing mother when I was needing a rest or when one demanded more of me the other got her. It was a perfect situation and we all loved these three years.
I blamed a lot of the changes happening with A. on the fact we moved away from my sister who he was very close and attached to. No doubt, this did cause some psychological turmoil for him. It did for me! G. began crawling and being more mobile. Wishing no time at all he was walking. Between a mobile toddler and A. turning 3 things quickly changed.
New doctors were found in our new home. Closer to some family, further from others. My husband travelled all the time for work. I was alone with the kiddos all the time. Things rapidly started unravelling. A. became angry all the time. Frustrated. I often cried and wondered if the move was going to permanently damage him. G. was eating dirt, climbing brick walls, into cupboards. He loved noise and music, A. couldn’t handle it at all.
The first time I really wondered if we were all going to make it through was around the first three or so months of our move to the house we bought. I longed for our simpler days of A. playing with the hose water which was plentiful back East, and yet scarce and dry out in the West where we now resided. We had moved away from my sister, my main support, my best friend, but she was going to follow once school was finished for her. I just had to count the months….
Having moved closer to my side of the family, I rarely saw anyone. Often I would drive the many hours south to see my Mom and friends from childhood. It was all I could do to keep me from falling apart. Yet, seeing how different our life was to theirs made me feel more estranged. Isolated.
No one really came to visit us. No one could find the time in their own busy lives. We had moved so close compared to all the various places I had been living before…but it was not close enough for the support I was needed during this time.
Constantly I was reminded of the great life we had, before ASD reared it’s head and became the center of our world. Back to the time before the symptoms were there, or known, or obvious. Back before life became impossible for me to cope with. Back to the early days when it was just me and A. and life consisted of sleeping when he slept, and showing him the world through experiences.
All this looking back prevented me from going forward for a long time. Still, I find there are days, like today, when dropping G. off at his school and he has to be forced from the car and pushed into the hands of a para…crying because the transition was too short this morning. He wanted a bath instead of playtime…everything felt wrong to him and his world was upside-down. A. has a field trip today though and I can not be late! It is not fair on him to always be missing out because of a problem his little brother is having, and vise versa…
Days like today I am in constant turmoil. Wondering if I am doing it right??? Am I making things worse or better? Can they get better than this or is this our reality forever? Will they be happy? Self-sufficient? So many questions about the future and so much uncertainty, I find myself looking back. Feeling nostalgic for a time long gone. A time of ignorance and bliss. Sometimes I have to really work to get through these moments…remind myself it could be so SO SO much worse!!! Be thankful for my boys health, our health, and the stage of the journey we are at. I need a reminder that it is, in fact, OK. I can miss old times, I can worry about the future because in reality, as parents we all do. No matter the circumstances. It is normal. We are normal. And…we are going to be OK. We will.
autstanding 