Growing pains

It's taken me a while to catch up with reality, but I've had the growing realisation that Little Fish is not in fact the little fragile baby she used to be. True, she's got a lot of different medical issues, and true there are things she still shouldn't do (horseriding, trampolining, bouncy castles), but if her head doesn't fall off when I swing her by her ankles, it's probably not going to fall off if other people jump up and down holding her. She hasn't broken yet, anyway.

I'm a PMLD parent. I have a child (have had a series of children, actually) with profound and multiple learning disabilities. It's a great way to parent. Any achievement is celebrated. Mog kicks a book off her lap, we all cheer. Goldie shares a chip with a dog, we praise her. A precious fosling works out how to empty the cutlery drawer, we throw a party (and let him bring the potato masher). A child uses words, any words, and we jump up and down and bake a cake, because any word is better than no speech at all. We celebrate not milestones but inchstones. eye-pointing to the television, wayhey, the television will be switched on!

I love it - every tiny thing is noticed. Push a switch and the whole world will open up to you and give you your heart's desire. Grab a packet of mints as you go down the aisle and they'll be bought for you and praises sung for your ability to see and reach them. Flip your arm into a spasm which just happens to catch a woman's short skirt and watch that woman come and blow you a kiss. That's my kind of parenting.

And that's a great kind of parenting for the kind of child who needs it. But Little Fish does not have profound and multiple learning disabilities. And if a child can eat a Cheese String and a pizza and a bag of chips and an apple, that same child can probably cope with other fruit and vegetables and bread without the crusts cut off. And if a child can eat macaroni and spaghetti I'm sure they won't fall apart if they eat pasta swirls, even wholemeal ones.

And a child who can manage school and Godzone and Birthday parties probably should be able to cope without my undivided attention when I'm on the telephone to someone else. And quite possibly does not need a constant Peppa Pig/Charlie and Lola/Nanny McPhee soundtrack to life.

We ran away to a friend's house for a few days. We infested her house with stealth woodlice, but that's a different story. And as I watched, my friend gently but firmly took Little Fish in hand. Little Fish ate at the table. She ate weird bread with funky pate. She ate the pot of jelly she'd insisted on having despite knowing she doesn't like it. She ate without needing music as a diversion, and listened without constantly interrupting the grown-ups. She sat on the toilet without tears, and on the third night, she settled herself to sleep without calling me back a dozen times a minute.

And she had a fabulous time, and didn't want to go home, and can't wait for our friend to come and visit.

And I came home, and thought for a bit, and prayed for a bit, and listened to the parenting tapes I've had for a while, and re-read the parenting book my sister in law gave me for Christmas (and realised again why she might have done so). And I cleared off our kitchen table, and realised that I have been scared to try to sort this out.

Scared of Little Fish's tantrums; she's been the one in charge, not me. Scared that by disciplining her I would undermine her attachment to me, push her away from me and into an attachment disorder. Scared that pushing her eating habits would cause her to aspirate and have that chest infection the SLT keeps reminding me will kill her. Scared that in helping to shape her the way she should be I would crush her spirit. And instead, I've helped her to grow into a child who is charming and delightful and wonderful in public, and who thinks nothing of throwing tantrums, slapping my face, tearing her hair and head banging in private. And I mention her less savoury habits not to show how awful she is, but to remind myself of how confused I have allowed her to get, by not placing the same expectations on her at home as she has elsewhere.

So the times, they are a-changing. We're in boot camp. And it's not fun, for either of us. I have apologised to her for the fact that I've let her run things when it isn't her job to do so. She looked somewhat confused, until she realised I was telling her I was taking back charge.

The nights remain sorted. A new mattress topper makes for a more comfortable bed, with the added bonus of somehow making it easier for her to turn herself from side to side. I've shown her how she can adjust her own mask. And long school days certainly make it easier for her to fall asleep straight away.

And the days? We're having similar numbers of tantrums. Prolonged hissy fits. Her glasses are on the floor more than they're on her face. And everything is taking three times as long as it did before. At least. Tea tonight took three and a quarter hours. But she ate it. All of it. At the table. By the light of the fish tank in the end, since Mog and I abandoned her an hour into her stand-off. I remember my baby brother eating endless meals in the utility room, and sincerely hope he never tells Little Fish how he used to pour his vegetables down the back of the freezer.

I don't want mealtimes to be a battle. I don't want any of our times to be a battle, actually. But neither do I want a teenager who sits passively and refuses to dress herself. And I certainly won't be able to wrestle with an uncooperative teenager if she can't cath herself by then.

I do want a girl who is confident, independent, and secure. And as healthy as she can be. And I am as sure as I can be that stepping in now is going to be the best way to achieve that. But there's a part of me which just wants to sit down, order pizza, and enjoy her.

I'm hoping I can do both without it destroying either of us.

Tia