Restoring my soul.

Warning: this is raw, this is painful, this may not be your experience but it is mine. This is as honest as I can be.

A bit of backstory to help with the meandering tale.  My youngest child has always been my “more” kid.  More attention, More cuddles, More explanation, More detail, More preparing, More scheduling, just plain More everything.

When I was ten weeks pregnant we were involved in a major car accident – was this the cause?

He started life as most do in that he was born/birthed in a hospital, however he did not take his first breath for 30 full seconds – was there damage done?

I breast fed exclusively for nine months until he devolped such bad colic I had to transfer him to formula – did this do it?

He was a crier, he never slept, he had extreme car sickness, he never felt pain as a toddler, he got older and the screaming continued every time we left the house from18 months old.  There were meltdowns of extreme proportions, biting, kicking, punching, screaming…the screaming mine and his, the tears…both mine and his.  When he was small in size I could hold him, I could cuddle him to safety. As he got grew and eventually was larger than I, it became more difficult to find ways to calm him down.

The Kindergarten year was particularly difficult for us, I asked for help and was told “oh he doesn’t act like that here”, “he’s such a delightful child”,  I was being gaslighted by educators who didn’t want the paper work until one morning he bit me so badly I had stitches.  I showed the new teacher and she immediately went into action, Council assessors at the Kinder, referrals to all the Psychologists in town, referrals to Pediatricians the works.  However I needed the support at home, my husband wasn’t having it, he said all we needed was better discipline and that would “fix him”.

The first two years of primary school followed in much the same way as the Kinder year did, without an official diagnosis they could do nothing for me or him.  There was no funding, therefore no help in the classroom.  Of course they were supportive in their words and resources to me.

Finally at the end of grade 2 I had enough and paid for private assessment a cost of almost $1000.  A diagnosis of mid to high functioning ASD, ODD, OCD which eventually as puberty hit added anxiety disorder and depression.  He also suffered school refusal anxiety and is still suffering today.

I feel guilty every day, I feel useless every day, I feel afraid every day, I feel confused, worried and abandoned and alone every day.  Guilty because he has no ailment that other’s can see to verify it.  Guilty because we are judged, me as his mother and him for his differences.  Guilty because the programs that can help are way to expensive for me to afford.  Guilty because I can’t ask for help because there are so many other’s worse off who need the help more.  Guilty because all my energy is related to helping him get through another day or week or planning next year and my other kids are losing out.

I am angry almost every day, angry that the help he needs is unatainable and unaffordable and if we are in this situation there must be many more kids who go undiagnosed because of the waiting time for the public system.  Angry that the schools are doing the best they can with very limited resources available.  Angry at the judgement and the cross eyed looks from people who only see the outside of my child and know nothing about his internal scars. Angry at myself for being angry.

He is almost 16 years old now and he uses his words more than his physical body to get what he wants.  He has a one track mind and is very determined to do what he wants, even if no one thinks it is a good idea.  He doesn’t live in a world of alternatives, there is one path and that is the one he wants to pursue.

Even with the help and assistance of some outsiders I carry this burden alone, I carry the guilt and the remorse and the pain and the suffering alone.  I carry him…alone.