Control... it’s
something we all strive for. We don’t like being out of control or out of our comfort zones, yet raising a child (or children) with Autism, does exactly that. It removes so many facets of control from your hands and leaves you waiting, on edge, not knowing where the next outburst will come from.
In the past I was always been a big time control
freak. I still can be to a point, but gradually, step by step, I'm learning how and when to let go, how to pick my battles, and how to relax and 'go with the flow' of life. Not so many years ago, if I were told I couldn’t do something, I’d do it just to prove the
person wrong. I’m strong willed, stubborn to a fault and determined to “make
things work” no matter what. This has been my saving grace time and time again in allowing me to fight through things when it would have been far easier to give up, but in a lot of ways, this was also my undoing at
times.
When B-Man was a toddler, there was no way of knowing what would or wouldn’t set him off in one of his meltdowns that would last for 4+ hours. When I was at my most exhausted, I definitely made the mistake all too often of giving into his desires to avoid the out of control meltdown that would follow being told NO. However, this in itself was an issue as it created more problems through not having taught my child that he couldn’t always have everything he wanted. Yet there were times in which it were vital to "give in" for safeties sake. In those times it wasn't actually giving in, but life preserving for each of us.
B-man couldn't hear fully or speak until he was 3yo. This created quite the roller coaster of events on a daily basis. I had no way of knowing he couldn't hear until he was diagnosed with conductive deafness at 2 years of age, so before that, it was all hit & miss & not being able to work out why on earth all my child did was either ignore me, refuse to learn to speak and throw massive out of control tantrums that lasted for anything from 2-4 hours. Something as simple as him pushing a cup at me and grunting (the only sound he made) and me misinterpreting what he wanted in the cup could turn into all out world war 3. His tantrums were horribly violent. Punching, kicking, biting, throwing and smashing things... anything & everything was on the cards in those times.
Once he got going, he was near impossible to grab and stop. Yes, it's easy to sit there and think 'but he was under two years old, how hard could it be, just pick the kid up'. If I were in your place reading this, I'd probably think the same thing. He may have been a tiny toddler, but we're talking about a boy who kicked out the bars in his cot at 10 months of age - snapping them clear in half. His strength was, and 16yrs on, still is incredible. I learned quickly that I had a very, very small window between that first banshee scream and the throwing of whatever was in his hands, and having a full scale hellish outbreak in my house.
I learned to grab his arms quickly by the wrists - firmly but gently. I'd cross me arms over, spinning him around so he wasn't facing me, and sink to the floor - pulling him into my lap. Once we were on the floor, I'd cross my legs over his, and this was the position we'd stay in for as long as it took him to calm down. He would fight like you wouldn't believe, and head butts to my face/chin/shoulders/chest were common, but in this position we achieved two things. 1) He couldn't harm himself by throwing himself off things such as the kitchen bench, staircase, etc and 2) He couldn't harm his sister, myself or damage our belongings.
Time and time again, ignorant "specialists" sent me to parenting classes after having told me I was a terrible parent and had no idea how to control my child. Time and time again, I attended those classes, hoping by some miracle I would learn *something* new that may be what clicked into place & saved my son and my sanity. For 2.5yrs this cycle went on until one day a baby health nurse/counsellor was in my home and happened to see B-man spark into one of his rages first hand. She was astounded by the ferocity of it. She tried everything in the book to get through to him and calm him - failing at every turn. She then watched me wrestle with him gently but firmly until I had him in my "control position" and we sat for an hour until he calmed himself. (Thankfully that day it was a short tantrum) From that day on she became an advocate for me. Firmly supporting me and telling Drs I was not a lousy parent, but had more to cope with in my son than they had ever seen.
It was 1998, and the internet was still uncommon for people in their homes, but we had had the internet for over a year by this stage. I scoured website after website, reading any medical papers or information I could find on child behaviour. It was a hard slog as internet or not, information wasn't as readily available as it is these days.
One day I stumbled across a description of Aspergers Syndrome. I instantly saw my son in the description. His obsessive behaviours, his obsession with routine, his need to have things exactly his way or he'd fall apart. The emotional overload he would experience when out shopping or anywhere with bright lights, loud colours or lots of people. His lack of speech. Later on I'd learn that his traits were actually Autism, not Aspergers, but at the time, AS felt like an answer to my prayers. I finally could understand what was going on with my son, and some of why.
I had no idea how long and painful the fight for a diagnosis would be... or even that it would be a fight. I could see so clearly what was going on with my son, I just could not understand why the Doctors failed to see it. Why they were so fixated on past belief systems and not open to the new learning going on in the field of medicine. Regardless of what they thought or said... I knew my son, and I knew one day, somehow, somewhere, someone would see him for who he was and we would find the help and support we needed. I couldn't control what lay ahead, and I had no idea how to prepare for it, but I could be willing to do whatever it took, and willing is exactly what I was.
When B-Man was a toddler, there was no way of knowing what would or wouldn’t set him off in one of his meltdowns that would last for 4+ hours. When I was at my most exhausted, I definitely made the mistake all too often of giving into his desires to avoid the out of control meltdown that would follow being told NO. However, this in itself was an issue as it created more problems through not having taught my child that he couldn’t always have everything he wanted. Yet there were times in which it were vital to "give in" for safeties sake. In those times it wasn't actually giving in, but life preserving for each of us.
B-man couldn't hear fully or speak until he was 3yo. This created quite the roller coaster of events on a daily basis. I had no way of knowing he couldn't hear until he was diagnosed with conductive deafness at 2 years of age, so before that, it was all hit & miss & not being able to work out why on earth all my child did was either ignore me, refuse to learn to speak and throw massive out of control tantrums that lasted for anything from 2-4 hours. Something as simple as him pushing a cup at me and grunting (the only sound he made) and me misinterpreting what he wanted in the cup could turn into all out world war 3. His tantrums were horribly violent. Punching, kicking, biting, throwing and smashing things... anything & everything was on the cards in those times.
Once he got going, he was near impossible to grab and stop. Yes, it's easy to sit there and think 'but he was under two years old, how hard could it be, just pick the kid up'. If I were in your place reading this, I'd probably think the same thing. He may have been a tiny toddler, but we're talking about a boy who kicked out the bars in his cot at 10 months of age - snapping them clear in half. His strength was, and 16yrs on, still is incredible. I learned quickly that I had a very, very small window between that first banshee scream and the throwing of whatever was in his hands, and having a full scale hellish outbreak in my house.
I learned to grab his arms quickly by the wrists - firmly but gently. I'd cross me arms over, spinning him around so he wasn't facing me, and sink to the floor - pulling him into my lap. Once we were on the floor, I'd cross my legs over his, and this was the position we'd stay in for as long as it took him to calm down. He would fight like you wouldn't believe, and head butts to my face/chin/shoulders/chest were common, but in this position we achieved two things. 1) He couldn't harm himself by throwing himself off things such as the kitchen bench, staircase, etc and 2) He couldn't harm his sister, myself or damage our belongings.
Time and time again, ignorant "specialists" sent me to parenting classes after having told me I was a terrible parent and had no idea how to control my child. Time and time again, I attended those classes, hoping by some miracle I would learn *something* new that may be what clicked into place & saved my son and my sanity. For 2.5yrs this cycle went on until one day a baby health nurse/counsellor was in my home and happened to see B-man spark into one of his rages first hand. She was astounded by the ferocity of it. She tried everything in the book to get through to him and calm him - failing at every turn. She then watched me wrestle with him gently but firmly until I had him in my "control position" and we sat for an hour until he calmed himself. (Thankfully that day it was a short tantrum) From that day on she became an advocate for me. Firmly supporting me and telling Drs I was not a lousy parent, but had more to cope with in my son than they had ever seen.
It was 1998, and the internet was still uncommon for people in their homes, but we had had the internet for over a year by this stage. I scoured website after website, reading any medical papers or information I could find on child behaviour. It was a hard slog as internet or not, information wasn't as readily available as it is these days.
One day I stumbled across a description of Aspergers Syndrome. I instantly saw my son in the description. His obsessive behaviours, his obsession with routine, his need to have things exactly his way or he'd fall apart. The emotional overload he would experience when out shopping or anywhere with bright lights, loud colours or lots of people. His lack of speech. Later on I'd learn that his traits were actually Autism, not Aspergers, but at the time, AS felt like an answer to my prayers. I finally could understand what was going on with my son, and some of why.
I had no idea how long and painful the fight for a diagnosis would be... or even that it would be a fight. I could see so clearly what was going on with my son, I just could not understand why the Doctors failed to see it. Why they were so fixated on past belief systems and not open to the new learning going on in the field of medicine. Regardless of what they thought or said... I knew my son, and I knew one day, somehow, somewhere, someone would see him for who he was and we would find the help and support we needed. I couldn't control what lay ahead, and I had no idea how to prepare for it, but I could be willing to do whatever it took, and willing is exactly what I was.
~M~
No comments:
Post a Comment