I did what I never thought I would do. I let the general public into our lives, to judge us and condemn us and hate us. Surprisingly, the general public didn’t do any of those things. They supported us, they sympathised with us, and even reached out to us, to let us know they were praying and sending healing thoughts our way. Many offered suggestions, doctors to contact and therapies to try. A great many even donated money – often families that are living with Autism and struggling financially, yet they wanted to help us.
My close friends on social media have also been incredibly supportive – and without their strength, I would have given up the fight a long time ago. There are times I have felt ashamed as a mother – that I wasn’t good enough, that I should have been able to cope with everything far better than I was, and that I should not admit my failings to my friends. Yet they have ALWAYS been there. They cared for me, they loved me, they checked in on me when times were really, really bad. I knew that when I had dark thoughts, there would be someone there, someone who understood all too well what I was going through, and who would hang in there with me.
There are some who aren’t like that. Some who judge me because I have reached out for help (repeatedly), and in the course of that I have shown the public what autism can be like. It is not a gift in our household. It is a way of life for my daughters – something that makes them possibly different, but certainly not less, than anybody else. Yet for my son, who has the same label, it makes his life a daily struggle. For sharing that struggle I am judged and persecuted, I am attacked verbally and shunned physically. Not by those who don’t understand Autism – but by those who say they understand Autism all too well, because they identify as being Autistic, and/or by having children who are autistic.
I am judged because I rejoiced when my son was finally able to pick up a crayon properly and drew on his bedroom walls. Years of trying, hoping and wishing that one day he could draw, made the colourful walls seem trivial. Yes, I would love to have a beautifully painted bedroom for him. The reality is that I can’t. He has pulled the wallpaper off, leaving no primer on the walls, and with many poo stains and now crayon marks, we will most likely need to replace the walls before we can even think about painting. Besides – he prefers it like this. Is that wrong?
My son used to sleep on the floor, on the disgusting carpet that covered his bedroom. We ripped it up (the poo stains would not come out anymore and the carpet was over 20 years old), and had lino laid so we could keep it clean for him. He slept on the hard lino floor – shunning any mattress I tried. I bought an organic rug that didn’t smell so he wouldn’t react to it, and that had the soft, plush feel that he liked, and he slept on that. We then finally managed to get him onto a mattress to sleep. Three mattresses later, we graduated to beds with a mattress on top. Two bed bases and another two mattresses later, we had run out of beds, mattresses and money. He was still not using sheets – he would rip them off the bed if we were lucky, and rip them apart if we weren’t. We were fortunate and received some funding for a demo model mattress that the local psychiatric unit uses, and he has not been able to destroy. Some time ago he started tolerating sheets on his bed – he would still rip them every other day but it was progress.
We tried several types of curtains that wouldn’t show the poo stains and were hard to rip. They became a strangling hazard because he would try and wrap them around his neck and hang from them – not a pleasant sight for a parent to find. We installed industrial strength curtain rods and holders – he broke them while swinging from them to try and kick the windows out. Should I have left curtains in there so he could hurt himself?
He shreds paper to calm himself, to distract himself from pain, to avoid having to interact with anyone, and because he likes to make it snow by throwing paper everywhere. He often objects to us cleaning up the paper because he likes having it messy. We have reached a compromise – I let him shred to his heart’s content in his room, and he lets me enjoy a relatively paper free environment in the rest of the house. We still clean up the paper in his room every day, and give it a thorough scrubbing when he’s urinated or defecated on it. Yet I am a bad parent for letting him soothe himself this way, and not being there to clean up every shred of paper as it hits the floor apparently.
During mad moments, he would pick up his furniture and hurl it at the window, at the walls, at the door and at anybody who was there. He hurt himself several times doing that. Was I wrong for removing the things that he would hurt himself with, leaving him with only one piece of furniture in there?
He has come out of his room at night while we were asleep, opened the dishwasher and smashed drinking glasses on the floor, to subsequently walk over them. He has absconded numerous times, easily climbing any of the fencing solutions we rigged up, and played on the road, or gone missing. Yet I am a monster for having a lock on our doors.
Attending school for nearly two years traumatized him, to the point that he adamantly showed us that he did not want to be anywhere near his school. Apparently I should have left him there for his benefit.
We tried medications: they constipated him to the point that he could not urinate, they made him slam his head repeatedly into the floor, they made him hurt himself to an extent I had never seen before, they stopped him from sleeping for 29 hours, and increased his anxiety hugely. Yet I am blamed for “pulling him off his meds”.
I am doing the absolute best that I am physically, mentally and emotionally capable of doing for my son, my other children, my husband and myself. I know there may be people out there who have a greater capacity for these things than I do, but they do not live here. They are not here to wipe the tears, to calm the anxiety, to clean up the mess, and to try and hold a family together, that has been subjected to what ‘the public’ would never, ever understand, unless we bring it out in the open.
Am I happy to have shown my son in a state where he was not capable of controlling himself? No. Do I like showing pictures of him naked or semi-naked where anybody can see him? No. Am I glad that I have exposed our messy, chaotic home for the world to see? Absolutely not. Would I have done it if we had received sufficient help and support anytime during the two years we have been asking for it? No way.
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