I hate to say it but the moment you find out you are pregnant you feel guilty, or at least I did. After the congratulating ourselves I started to remember all of the times in my life that I had gone out and drank alcohol, smoked thousands of cigarettes, and ate all of the wrong things. This was years prior to the nesting phase, which preceded the pregnancy of course. The moment you know you are carrying life all the bad stuff you have done comes back to you as you know you are responsible for another human being.
It goes on through the birth, and into the child’s first few weeks and years of life, and then you think it would stop but no, they go to school and if things don’t work out more guilt creeps in as in my case. Others sort of resumed a normal life or so it seemed, while I seemed to spend my life at the school, trying to find out why my son isn’t settled, can’t do his work, can’t sit down, feels persecuted by other kids, doesn’t eat his lunch and is generally not a happy camper. He goes on for four years this way, opting out of the school play, insisting he doesn’t do art even though everyone else is, playing alone in the school yard at lunchtime and I’m so GUILTY about it all because I know the situation is not right.
You may wonder how it took four years before I took him out of that school, I wonder that too. I had many meetings and I tried to get help for my boy but no one was listening and everyone was playing on my guilt. I trusted them and their professionalism. They (the teaching staff) would always conclude with “if you try this or that Mrs O C, perhaps it will all work out” – you know the usual stuff like playdates and all of that. Of course I had tried all of that because I had an older son and was an experienced mother.
We then put him in a school where the primary curriculum was taught through Montessori and this suited him. He was nurtured and cherished by the staff and he made some friends there. The class size was small and he could concentrate a little better. At this stage our child had had a diagnosis of mild learning disability, but it really didn’t fit him, and I put it away to the back of my mind. I was wracked with guilt at him being labelled in such an inaccurate way. It took a long time and a lot more stuff to happen before he got the correct diagnosis which included SPD and ADHD and Asperger’s syndrome. We had a younger son at this point who was four and had a diagnosis of autism. The older boy would kind of study his behaviour, and reactions to things, and then comment on how similar they were.
One day while I was reading yet another book on the subject of autism and particularly a chapter on sensory processing disorder and how it affected the thirteen year old author, my boy asked why I was laughing. I read him a passage to which he immediately responded “that guy is me, he is living my life!” We brought him for an evaluation within weeks and he got his array of labels mentioned above! The guilt I felt was unbelievable, I tossed and turned for weeks on end thinking about how I had failed my wonderful boy, HE diagnosed himself at age eleven after many years of turmoil and a really hard time in school.
Looking back I was unlucky to have come across so many teachers along the way who didn’t listen. I was also annoyed that I hadn’t seen why my lad was so upset in the first school, it is obvious to me now that it was all sensory related. His auditory processing difficulties caused most of his academic problems, his need to stretch his legs and walk about was taken as defiance, and there was his intense dislike of finger painting and artwork in general. He is happy now and ready to join secondary education at age thirteen but I’m already feeling guilty that he is not as well equipped as the other kids his age.
I know its not my fault, but I can’t help feeling it. Parents of kids with sensory disabilities need support and not condemnation. We need people to listen without judgement and most of all we need our kids to be loved and heard no matter how difficult it may seem. My guilt was compounded by professionals all around me who could have helped, but instead they shifted blame. I guess I didn’t communicate the issue of my son well to them. I do think that we have a tendency to want to take our kids problems away and we somehow feel guilty that they are suffering instead of us. I dont mind the ADHD, the SPD, and the Asperger’s Syndrome. But take away the GUILT!!!!!!!!