I do not always have my life together.
In fact, I think if my life where “together” I would be normal, but I’m not “normal”, I’m the mother of a special needs child, hanging on by the tiniest thread and pretending that everything is fine, because I know nobody can help me, there is no room for outside help because that’s why parenting a child with Autism is so lonely, there are very few people who understand, and there are very few people who your child will allow near them.
It’s the nature of the beast.
People will try, offer advise, and even offer help, but it won’t really be accepted because when the Autistic child has chosen their “safe people” there are very, very few who are then allowed into that circle of trust, simply because building trust with an Autistic child takes time, lots and lots of time, patience and perseverance, and to be honest not everyone is in for the long haul. It’s just too hard.
We’ve had a very long year in terms of Autism learning curves. The steepest learning curve was realising that when you rock their routine and their private space like we did with our parents moving in as well as renovating the house in the same year, you literally upend the entire universe.
My son has had a rough year with himself. With me. With puberty. With friends.
Sometimes it feels like we have regressed years in just a short 6 months of upheaval and change, we tried so hard to soften the chaos for him, but nothing worked. Our lives were turned upside down by the renovations and I think it’s going to take him months to recover mentally and emotionally. I think I’m going to take months to recover too.
We had a visit with his Psychologist this past week, and once again we start from scratch. It was a long appointment, exhausting, he refused to talk to her in the beginning, hiding behind the couch cushion. We played conversation relay, the Dr asked me questions for Cal, I would repeat the question to him behind the pillow and he would give me the answers in a whisper and then I would tell the Dr what he said. It was a long game, but eventually after about 20 minutes he came out from behind the pillow and started answering the questions himself and talking directly with the Dr. She is an amazing Psychologist, and she was so gentle and understanding with him, slowly winning his trust.
I must just mention that I had to talk with the Dr first, just to fill her in on the 2 years between our last appointment and now, and Cal had to stay with Dad in the car, he had a meltdown in the car and started trying to smash the window to get out to get to me. They then moved inside the building to the waiting area and the violence continued as he banged the chair on the ground, upsetting the entire reception area. We had to let him into the session then and the Dr started asking him his questions.
We were given some basic cognitive training tips to use with him, and now we are being referred to the Pediatric Psychiatrist in Cape Town to move forward long term. This means regular trips to Cape Town for appointments and treatment schedules, possibly shifting his medications again, and forking out thousands of rands for his treatment for the rest of his life. If anyone would like to contribute to his treatment fund, we will be opening a bank account in his name for this purpose, you are welcome to contact me for the details.
Somewhere in all of this God is working, I’m pretty sure He must be, even though life feels like a washing machine stuck on the spin cycle at the moment.
My emotions are fried, my restraint is non existent, and sometimes I just feel like driving my stupid Jeep that’s about to be repossessed into the sea. There are very few things that bring me hope and joy at the moment, my veggie garden, my job and Christmas movies are pretty much keeping me sane right now, and yes, I am also on anti-depressants and mood stabilisers for those who would like know.
This is a pretty bleak post, but It’s the honest truth right now. Think I’ll go to church tomorrow.
