Saturday, 4 September 2010

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.



Anonymous said...

That's parenting all right. We've all been somewhere similar. She really will thank you in the long run. Best of luck.

Anonymous said...

Long time lurker, here. I'll be praying for you all, if that's okay? It sounds like the right, but tough, thing to be doing. It's really clear that LF loves you tonnes, and her attachment to you isn't going anywhere.

MOM2_4 said...

Hugs & Prayers!! It's a hard job. Hang in there, you CAN do it and LF will be the better for it.

HennHouse said...

I agree with the other comments here... and I'll be praying as well.

Ashley said...

Hi, Tia

I totally "get* what you are saying here. My mom raised her disabled child (me) first, then 7.5 years later, my perfectly healthy sister.

And was completely shocked when someone informed her that most 6 year olds can and do dress themselves.

Hang in there.


Anonymous said...

It is a battle and a challenge sometimes to know how much to push for and what to expect--but I have found that those with special needs can do more than they want us to think they can and they are quite stubborn about it.

And when we have kids who can't do much at all and the little things are big accomplishments--it is harder to not give in to the one who has some needs yet is able to do alot for themself too.

There will be some battles and some questioning of yourself on your part--but hang in there and you'll both be glad.

praying for strength, wisdom and patience.


I'm sure there are those who have thought that I've been to hard at times with Alissa--but most of the times when she says I can't and I say you can--she can. Doesn't make me real popular with her--but it is for her best.

Elizabeth said...

Good for you Tia! If you figure out how to get her to mind you, let me know....I've been working on that one with B. for 12 months now. She will love you more, as she realizes you still love her inspite of those "hissy fits" Praying for strength, stamina and patience for you in this.

Tina said...

Hugs, Praying for patience! And deffinitely praying for you both as you retake the control.
Love you loads

Alesha said...

wow. once again, you amaze me, Tia. it's so hard to walk this fine line with our kiddos! i love that you are "taking the bull by the horns", or perhaps, more realistically, "taking the Little Fish by the gills", and doing what is right and best for your child.

by way of encouragement, we are going through a time of teaching with Isaac too. we were so thrilled when he learned to shake a toy to make it rattle. he "whams" it on his thigh over and over and smiles. Buuuuuuut imagine trying to change his diaper while he's "whamming" a pretend toy! it's the same motion, but now it's "hitting". [sigh...]

so we're working on "hands down when we're changing pants." it's hard to discipline his playing, but we know it's the right thing for that activity. now that we will have a carer, we can't have him hitting her! he has to learn the difference.

so...i understand a tiny bit where you are right now, and it's only 5-6 times a day, not all day long. BUT it's the good and right thing, and you will conquer it.

don't be discouraged. keep sharing with us. be brave to ask for suggestions. pray a LOT! ;o)


Doorless said...

LF is smart and has been in control . But, then she is so cute and no one ever thought she'd be able to be the able kiddo she is.
You are very wise to take over control now before she hits those teens. It will be much easier then.
You may go through a few tough weeks as you both sort things out but it will be worth it.
You are such a good mum and the fact LF behaves when out just shows she knows what is right.
Hugs and prayers for both of you.

Linda said...
This comment has been removed by the author.
Linda said...

So, as parent of a now 26 year old girl and a 23 year old boy, I'd like to offer: 1. be optimistic but still expect the odd tantrum - after all who can our daughters trust to accept them warts and all other than family? 2. some "bad" behaviour at home is their way of letting off steam after being so good at school/church/parties etc. 3. both my children actually appreciated having firm boundaries and seemed to be happiest when they stepped over the line, were punished with, for example, no TV for a week, and then played beautifluly and imaginatively together 4. I used the "just 3 mouthfuls" principle with "dreaded foods" and it was amazing how much easier mealtimes were, how many new foods were introduced and then became favourites.

I wish you all the best with firm and kind parenting because it will definitely pay off in the end.:)

Swift said...

Good luck Tia...easier to say than do, but definitely worth it. I was shocked when I was flung into residential college, and the average social age seemed to be 10-12 (in those without PMLD, doing A-levels/GCSE/GNVQ etc)'re definitely doing the right thing by LF...not saying my 'angry at the world' teenager was right either, but there's got to be a happy medium...

Elinor said...

Yay, go Tia!

This post resonated with me a lot. Jordan used to dominate the house with his rages but now he's a gentle giant. Which isn't to say he doesn't have the odd prima donna tizzy but then I've been known to have one myself...

Anonymous said...

Wow - will be praying as I'm sure it won't be an easy ride! Rest assured I only gave you the book because I have the same struggles and any books that are remotely helpful seem worth passing on to others!

You have inspired me to start being firmer with the Mancub. I have decided that NOW is the time that he will start having to eat at least one mouthful of everything on his plate. So, one mouthful of peas in today. Hurrah! It did involve a bit of time in his cot but we got there.

Youe interfering sister-in-law!

Catherine said...

Praying for you both and watching your progress closely Tia, as I will soon be coming to you for advice for "the boy"! Especially once he's in control of the wheels and can go the opposite direction to the one I need us to go in...
Catherine x

kitchu said...

oh what perfect insight! and you have found the answer that will bring you exactly what you both need: her independence and secure attachment- and those are firm but loving boundaries, and rules to abide by, and little tolerance (though not intolerance) for crazy long tantrums :)

you are an amazing mother.


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