We all have dreams for our children; for their future, for their happiness. We have dreams for how our families are; when I was pregnant with Josh four years ago I had many dreams about how family life might be. Christmas time with us all in matching pyjamas, siblings for Josh to play with and be protective over (welcome my little Holly), birthday parties and fun days out with friends of ours and their kids.
I never for one moment thought one of my dreams would be to pray for Josh to wear a pair of trousers. And I don’t even say that metaphorically – this weekend I actually prayed for Josh to wear trousers, so that we could go out for a walk. Because going for a walk is the one “normal” family thing we can do together. And the thought of not being able to because of Josh refusing to wear trousers is literally more than I can bear.
Autism is a life long condition and something that is ongoing, something I am constantly learning about and trying to understand. I spend a vast amount of my time trying to get into Josh’s mindset; trying to rationalise and work out why specific things that most of us don’t bat an eyelid at, drive Josh to the point of despair that result in a meltdown. It’s exhausting, draining, and it’s frustrating because, despite his speech certainly improving over the last year, he isn’t able to tell me what he is feeling or what it is that’s causing him such aggravation when I dare to suggest putting a pair of trousers.
Josh was invited to a birthday party on Sunday and I knew, given his behaviour the past week or so, he wouldn’t cope. So I took Holly along instead, who had a lovely time. But as I looked around at the other kids I was consumed with such an unpleasant feeling; jealousy. This isn’t the first time and it won’t be the last. And the envy was over what may seem like ridiculous things; my friends little boy was wearing jeans and I just looked at him and thought “I wish so bad Josh would just wear some trousers”. I perhaps wasn’t in the right frame of mind that day for the party; I sat in my car for a good ten minutes before I went in because I just didn’t want to go in. I didn’t want to face the questions, all from kind hearted people with no malice intent, but I just felt like I didn’t want to discuss schools, Josh’s progress and so on because we all know how different our path is from theirs. It’s painful sometimes to the point of making me ache inside and sometimes I feel like I don’t have the energy to vocalise them when I’m still trying to get my head around it all myself.
When Josh’s problems first became apparent I was determined we’d still go out and about and do things. As his behaviour became more and more difficult to contain in a public place, I narrowed down our activities to “safe places” where we could run around and play safely, and places I knew Josh enjoyed. Then in the Spring of this year Josh started wanting to take his trousers off the vast majority of the time; at home, at his grandparents, even at nursery. Not ideal but we’ve always tried to pick our battles with Josh; life is challenging enough for us so we don’t like to overly cause drama where it’s not necessary. But as we got into summer it started to become a real habit. So if we did go to a soft play place (we got it down to a couple of places he felt comfortable in ) we would have to keep him constantly busy and distracted so he didn’t start taking his trousers off. All us parents find it hard when kids kick off in public so you don’t always want to attract even more looks when your son decides trousers aren’t for him.
But now, well into Autumn, the chillier temperatures aren’t even encouraging Josh to don a decent pair of jeans. In fact it seems to be getting worse. I know if he had been in the right frame of mind for that party on Sunday and I’d taken him, he’d have immediately stripped off, and although my Mum friends wouldn’t have been surprised at this because they’ve known about this challenge for a while, I’d of had to endure other people staring, perhaps making light hearted comments, me explaining “he’s autistic” and then dealing with the stereo typical comments (I mentioned Josh’s autism when I was chatting to my optician the other day and her response was “they’re very clever though aren’t they” thus collectively deciding every autistic child is a genius and tarring them all with the same brush. Can I just say autistic children, just like all children, are all very different). Sometimes, particularly when you’re having quite challenging days, you just aren’t in the mood for this. It’s draining.
But going for a walk, that’s the joy we have as a family. Josh loves to be free; a huge part of his autism is that he has no danger perception so to be able to run free and have fun in a safe outdoor space gives him such happiness. On the days Josh doesn’t have nursery, Josh, Holly and I always go for a walk and to the park. Come rain or shine, it gets us out the house and lets them burn off some energy and for us to have time together. The mere thought of losing that freedom, that happiness we cling on to because all of the other usual options for us are out of reach because Josh doesn’t cope with them, it fills me with complete despair.
It’s a difficult time at the moment. It’s not the first testing period we’ll go through and it won’t be the last. All I can do is pick myself, even when I am feeling so utterly lost and drained from it all. Because Josh feeds off every energy I give off and right now he needs calm, positivity and encouragement. As much as I feel hopeless at times and like I have no idea what I am doing, I have to remind myself that I am the best person for the job. I was chosen to be Josh’s Mum because, despite how I sometimes doubt myself, I am strong enough to fight for him, to ensure he gets all the support and love he needs. He brings us such joy every day with his singing and reading the Hungry Catapillar, and our little Team Williams will continue to find our way on this unusual and unexpected path.