The Problem with Carers

Taking a break from looking after my autistic son was something I desperately needed, but couldn’t get. Not because I couldn’t find people willing to look after him; once I figured out where to look there were plenty of people willing to take my money. The problem was finding someone who was able to do it in a way that didn’t back-fire on both my son and myself; making our lives harder rather than better.

I became very adept at interviewing potential carers. And if I gave them enough talking space they would babble to the point of revealing what type of carer they were and how they thought about autistic people. Sometimes the problems with these candidates were obvious. There was a particular young man who told me boldly that he could handle my son; he looked after lots of autistic children and enjoyed it. Sounded like a good start. I explained that sometimes my son would need alone-time; when stimulation and interaction got too much, he had to pick up on the signs and step back. The young man’s face lit up and he relaxed. He confidently told me that was the reason he so loved looking after autistic children; because you didn’t have to do anything with them at all. You could just sit back and leave them to do whatever they liked, without having to interact in the slightest. Next please…

There were the times I thought I’d found someone great, who just ended up creating new anxieties and behavioural problems in my son. One (unknown to me at the time) frequently squeezed his cheeks and told him how cute he was (completely un-necessary, no matter how cute my son was), which became a hard-fought behaviour of my son digging his nails into either side of my mouth and squeezing until my cheeks were marked and I was in tears with the pain. One of his carer’s English pronunciation was poor, so that my son’s basic language ability reduced and we ended up with more tantrums on our hands because we couldn’t understand the new words she’d taught him. Little problems cropped up all the time and evolved into bigger problems, and were never easily overcome.

Because I didn’t always know where the problems came from, I didn’t know what was going on or how to fix it. For example, I thought he was trying to hurt me when he grabbed and pinched my face because he had a previous history of not letting me talk. It wasn’t until I accidentally happened upon his carer squeezing his cheeks so gleefully that I figure out what was going on; it turned out he wasn’t actually trying to hurt me or was angry at those times, he thought he was just using an acceptable way to interact with others.

Sometimes the carers assumed he was stupid or unaware, thus creating problems too. Like the one who couldn’t be bothered reading his story-book to him and would just flick through the pages making the words up to make it shorter. My son had memorized the words in that book and was quite upset and confused when she said them all wrong, but he lacked the communicative ability to let her know what she’d done wrong. And this was how these carers were acting when I was around. Makes you wonder what you miss when your back is turned.

While these carers looked after my son, I was still in the house. The care would go for an hour or two at the most, and I’d use that time to do chores mostly. I couldn’t just leave them alone with my son because he always had a tantrum or behaviour they either couldn’t handle or didn’t understand, so I was required like an on-call interpreter and a soother, to try to bring my son back into a manageable frame of mind for them. If I didn’t intervene, and left them to try to sort it out themselves (which I tried many times), the tantrums typically escalated to the point that the rest of their caring session was spent trying to calm him down, and I’d be left with an anxiety ridden child for the rest of the day after they left.

Sometimes the carers would decide to try something they’d heard about or tried with other autistic children. Like facilitated communication, or some other method of teaching my child that at times expressly went against what we were currently using with him or frankly just went against good science. Most of the time they would talk to me about it first, but some of the time they would just use their “initiative” or automatically incorporate it into their time with him. Using multiple methods to deal with a specific problem with my son, often just confused him and wore him out, and would lead to further confusion as we as his parents and other people tried to make sense of what he was trying to communicate or achieve. There were times when having more than one method was intentional and helpful (like using sign language and PECS), but various methods undercut and undermine rather than support each other. Consistency across therapies is a tricky business, one that took a lot of time and effort on my behalf to balance between all his therapists and therapies. I was the one constant overseeing it all. Having a carer interject something new without thought or knowledge as to how it meshed with the rest of his therapies, introduced anolamies that helped no one.

Many times I felt more exhausted and upset after the carer had left, than before they’d arrived. I persisted with these carer hours though because people kept telling me how important it was to leave him in other people’s care, and take the time for myself. But my son’s needs were so high and so unique that it never really worked out well for anyone, except that person walking out the door with my cash. Thankfully – most of the time – that money was given back to me by a Trust that supplies funds for these carer hours, so I wasn’t too out-of-pocket. (On a side note, there were some frustrating rules attached to that carer money from the Trust, such as I couldn’t use it to pay any extended family members or to pay someone while I was working.)

This is not to say he didn’t have a couple of fantastic carers in his life in those early years. There were two who were dedicated to him and my family. So much so that I came to see them as personal friends, who I could trust alone with my son for a while, and who I could even confide in. I was very isolated during those early years, so having someone to talk to openly, who understood my son so well, was a rare and precious gift in my family’s life.

These days finding time for myself by passing my son onto carers, is largely not an issue anymore. My son is at school five days a week, under someone else’s care that entire time, and I’m fine with that. Because those people looking after him at school are especially trained to deal with his autism and his unique self, maintain consistency in his life, and are in regular contact with me through a daily notebook and IEPs. But especially because my son’s communication has come so far that he can now let strangers know a fairly good idea of what he wants. That increase in communication has predictably come hand-in-hand with lowered anxieties and fewer tantrums. Obviously, if you can make yourself understood and can understand others, there are less triggers for those anxieties and tantrums, and more ways to deal with them when they do occur. His future is looking brighter than I thought possible.

It sounds like an easy solution; to tell a mother of a special needs child that she should take time for herself, and let other people take over the care of her child for a while. But the reality and consequences of that aren’t the same as for passing over a child who doesn’t have special needs. Sometimes – as with my son – passing a high needs child on to someone else can make life harder. At those times, the focus instead needs to be on equipping that mother and that child with the skills and knowledge required to reach the independence from each other that most families take for granted. It’s not about the mother being “over-protective.” It’s not about “smothering” the child. It’s about listening to the parent’s concerns and realising that the simple solutions to a normal mother’s burn-out (such as time away from the child), is not necessarily the best solution for all mothers. I did what I felt to be right for my son at the time, and it has turned out to be the right thing for him – and me – in the long-run too.

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One Response to The Problem with Carers

  1. blogginglily says:

    We are very grateful for the help of our parents at times like that. Last year the grandparents took turns with Lily at our home with her TSS. They really started to feel comfortable with her, to the point where we feel like we can go out to eat from time to time and not feel like we have to apologize when we come back.

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