Living with Rett Syndrome: Controlled crying, potty training and learning how to be ‘normal’ parents

Beth Johnsson

photo 5 300x225 Living with Rett Syndrome: Controlled crying, potty training and learning how to be normal parentsSon 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.

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  • ChbiM

    1. You can get sidecar cots that attach to your bed, or you can put your child’s cot next to your own bed, thus preventing the risk of suffocation.
    2. You don’t have to use the bedroom for sex.
    3. In most of the world, the child’s happiness comes before the parents’ sex life.
    4. For most of British history, parents and children have slept together. Only the upper classes slept apart. This was aped by the middle classes in the 19th century. I guess for those people the father’s right to nookie whenever he wanted trumped the child’s right to have his mother near him at all times.
    5. all the people I know who co-sleep have more than one child, which suggests they find a way around the nookie problem somehow.
    6. If there is a incident – a fire, for example, or a burglary – it’s much better to have the family all together at night.

  • ChbiM

    I object strongly to the implication that we committed a crime. We have done no such thing. Let me make clear that we don’t make out in the room when our child is there. Ever. Full stop.

    How rude! Are there no moderators on this thread? I see there is no ‘report’ button.

  • How_delightful

    Maybe you should learn to read?
    Maybe you should learn to understand?

  • How_delightful

    1. Great. Basic stuff.
    2. So? Ya gonna do it where the kids play?
    3. You are kidding, right?
    4. Upper classes often/usually had more intelligence/education than the lower/middle class. That`s may be why the trend caught on; due to more widespread education.
    5. Not sure if you are admitting to a crime there? The Social Services may claim that your are putting the children at risk of `Inappropriate touching` if you sleep in the same bed as children for hundreds of days or thousands?; as surely you and/or your friends may know (at least the males might)?
    It is clear that you fog over the “Nookie problem”.
    Even social workers state that `self-restraint` in sex is not a practical option for the public. Hence so many abortions I guess. And STD`s.
    6. If there is a fire; then it is just as likely that everyone dies in the same room. And many people would not approve of using children as human shields during a burglary. Surely; if the risk is that bad, It would be better to raise your children in a safer area?

  • On Green Carpet

    I do not have time for longer discussion, but as a being average white European parent (also for a period of time residing in Britain), I can assure, that I have got much better sleep cosleeping when I could just feel the needs of my baby, instead of getting out of my bed and taking also her out of hers for feeds thus disturbing her sleep more than needed. Of course, if you bottle feeded, that’s a different story and I don’t want to even approach the topic.
    There in fact are fewer infant deaths when cosleeping is a family way, that’s why it’s conventionally called “cot death”. You can NEVER roll over your baby, it does not happen this way. And for those not having a bed large enough- there are cot beds that are attachable to parents bed by removing one of the sides. Thus everyone gets enough space and baby can also be provided at the later stage with separate blanket (or even from beginning if that’s more convenient). However, closeness is incomparable to the fact that baby is pushed out of the room after asleep.
    It is widely recognized that night time parenting is as important as daytime. It is also recognized that child should remain in the same place where he/she fell asleep (instead of the hallway or other room, if was lulled into sleep in the bedroom), as this does not contribute to healthy feeling of security (nor logic).
    And no, I would never choose the crib I could roll around the house, because I rather carry my baby in arms or a tie sling close to my body, so she can experience both bonding, and physical development with the movements, and improve her observing skills. And for daytime naps I chose either the bedroom or most of the time- pram for sleeps outdoors to get the healthy fresh air dose.
    Many of the things we nowadays have on the lists of “must have for baby” (like cribs, then special cots etc.) are just simply good marketing. There is no NATURAL need of these. What child needs though is a natural attachment parenting. Both day and night.

  • ChbiM

    That remark is too rude to be worth replying to.

  • On Green Carpet

    That is not applicable to “controlled crying” way of getting your child to sleep. In this case it is a deliberate move by parent instead of reaction to an accident. And baby crying because of his/her needs not met and seeing the parent leave him in distress and hopelessness (because babies until certain age are in constant “present” stage with no future concept developed so can’t think of mommy comming back “later”)- it is in many parents and also specialist opinion cruelty.
    While I sympathize with mother writing this for her difficulties, I cannot and never will accept that making your child cry to go to sleep as the correct practice for healthy development.

  • ChbiM

    You seriously need to grow up.

    Your comments are testimony to the face that Britain is a prurient, sex-obsessed society. There are more important things in life than sex. There are more important things in a marriage – as you will learn if you or your partner are ever unable to have sex.

    Co-sleeping is legal, and it is widely discussed by childcare specialists. Most parents end up doing it at least some of the time, whether they mean to or not, out of practical necessity.

    A child’s happiness is more important than sex. Full stop.

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