Living with Rett Syndrome: Controlled crying, potty training and learning how to be ‘normal’ parents
Son number one is out of nappies! Fifteen days in ‘big boy pants’ and only three accidents to date! Son number one is three years and two months old: this is not the boast of a competitive mother whose nine month old has mastered the art of bladder control and who wants the world to know it. No, this is the surprised and immensely relieved declaration of a mum who, until 11 days ago, simply couldn’t believe it would work.
When Hannah was nine months old and bedtime was proving a struggle, I dutifully read my Gina Ford, watched Supernanny, and asked every parent I knew who didn’t seem entirely sleep deprived, how you get a child to fall asleep without lying next to them. ‘Controlled crying’, came the resounding answer, along with the assurance that three nights of heartbreak would be worth the reward. I remember sitting on the end of the phone to my sister when she executed the textbook techniques on her son, and sure enough, by night four, he had worked out that crying didn’t help and was settling himself to sleep. The holy grail.
It didn’t quite go that way in our house. Hannah didn’t work it out. She just kept on crying. Three nights of heartbreak became three months, Gina Ford found herself in the recycling bin and we found ourselves sleeping on the floor next to Hannah every night. Nothing else worked. It still doesn’t.
And then came the boys. When you have your first baby, people often tell you that there is no handbook for parenting, you just have to figure it out as best you can. And so you do. We figured it out for two years, then someone (something) changed all the rules and we had to figure it out all over again. Second time around, there is still no handbook, but at least by then you should have some scribbles in a notebook and a rudimentary sense of the basics. Except for us, the rules had changed again, and the scribbles and notes we had made didn’t really seem to fit the new model! True, the very early days were much the same, but it wasn’t long before we needed to start learning how to be parents all over again. We’re still learning.
Take the nappies, for example. We tried about six months ago: bought the pants, dusted off the potty, religiously read Pirate Pete’s Potty at bedtime, hung the shiny new reward chart and made a special trip to WHSmith to let the trainee choose Spider-Man stickers with which we would plot his progress.
All those things we’d heard ‘normal’ parents do. I was excited but also, I have to confess, sceptical. Could these things really work? Could we really teach this lesson? Could (and this seemed beyond improbable) it actually be easy? When every skill Hannah has learned has been so hard fought for, the product of endless repetition, intense interaction, multi-disciplinary input, it just seemed impossible that son number one might just get it. It was so hard to imagine, that when, after one initial day of success, he then refused to wear the pants and declared he didn’t like Spider-Man anyway, we just gave up. A self-fulfilling prophecy.
Bedtimes had been much the same. At around nine months, he had also developed that need for someone to stay with him as he fell asleep, and since Gina Ford had long since been turned into an orange juice carton and our trust of the textbook techniques into cynicism, that’s what we did. We tried leaving him to settle a few times, but he didn’t, and we didn’t persevere. There was still a 1:1 ratio of parent to child, so we could manage. But then the ratio changed, and the need for son number one to self-settle became urgent.
In the absence of any better advice, the textbook techniques resurfaced. We braced ourselves for weeks of heartbreak, of endless crying, of a lack of sleep and sanity whilst we struggled to teach our son to make connections and learn lessons which we hadn’t managed to teach our daughter. Three nights of heartbreak and by night four, he had worked out that crying didn’t help and was settling himself to sleep. The holy grail. A lesson re-learned.
Two weeks ago, anxious that son number one was the only three year old at nursery still in nappies, we had to dig out and trust the textbooks again. ‘There are no more nappies’, we said. ‘Oh’, he replied, and promptly picked up one of Hannah’s. ‘This is a nappy’. ‘Yes, but that’s Hannah’s nappy’. ‘Oh. This is a nappy’ (now holding one of his brother’s). ‘Yes, but that’s Noah’s nappy’. ‘Oh. Okay.’ And that was that.
I told my big sister about our happy milestone yesterday and said ‘I feel like a real mum!’ I know this sounds odd: in some ways parenting a child with profound needs is as ‘real’ and gritty as it gets, and being a mum is the most real and honest thing I could ever hope to be. But walking around with a potty and a bag of spare clothes under my buggy, learning to recognise the tell-tale jig, and running with two children under my arms for the nearest toilet because my son said ‘mummy, need a wee’, those things feel real. They feel good. The big boy pants are not only a mark of his milestones, they are a mark of ours too: slowly learning to unlearn some of the lessons Rett has taught us and to learn, instead, how to be just parents.Tagged in: Rett Syndrome
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