Monday 15 October 2012

Maggie and Us


Last week Shannon took Maggie to the hospital for a physical assessment. During the course of this she was informed that Maggie doesn’t have spastic cerebral palsy. She has athetoid cerebral palsy.

Here’s the definition.

The thing is, we always knew she had athetoid cerebral palsy. It’s just that we didn’t realise it existed. Maybe because no-one told us. Not even Maggie’s consultant who, you might think, would know about these things.

As you’ll see from the definition, Maggie will always struggle to eat. In fact, she may never eat. And she’ll never likely talk. Or walk. Or sit unaided.

What can I say about that except that it’s something we always knew and/or suspected? And that it’s fucking horrible.

The other side to this is that, according to the specialist Shannon saw, people with athetoid cerebral palsy are less likely to be mentally damaged. The other side to that is that, as well as the brain damage that caused her cerebral palsy, Maggie also suffered secondary brain damage that is likely to affect her mentally. So she loses on all counts.

However. From that brief assessment – and from what we know about Maggie – they could see that she’s bright and alert and very intelligent. So it’s possible that she’s mentally very slow. Or maybe not so badly damaged. Which is potentially good news.

However. The big problem with that is that she’ll grow ever more frustrated from basically being an intelligent person trapped inside a useless body. She’ll be well aware of her condition and have to deal with the anger, sadness and bitterness that comes with that.

The specialist at the hospital also suggested that Maggie could eventually go into mainstream education, with one-to-one care and support. This pleases us because it fits with everything that Maggie is. We took her to a special school the other week and could tell that she wouldn’t fit in there. She didn’t seem anywhere near as mentally damaged as some of the kids (who were also a lot older). The woman showing us round told us much the same thing, after just casually observing her for a few minutes.

And that’s the thing with Maggie. She likes people and noise and toys and books and lights and activity. Just like any other kid. She responds to all those things just like any other kid. But just a lot slower. Mentally I mean.

She’s currently having speech and language therapy sessions every week and progress has been good. Not with her speech or reaching out and grasping but with her communication and understanding. It’s clear that she doesn’t miss much. And as it’s likely that she’ll never be able to speak or reach, she’ll have to communicate some other way: with her eyes. So that’s what we’re working on. Her therapist tells us they’re making good progress with eye recognition technology and that it’s not beyond possibility that Maggie would be able to use this in the future to help her communicate.

More generally, she’s been quite sick these past few days. Throwing up a lot and being miserable. It could just be a bug that’ll pass soon. Or maybe it’s something else. The upshot is that she’s still not putting on weight and still not sleeping well. Previous to this she was sort of sleeping through the night. I say sleeping through but she woke at around 4am every morning. And that was it. We had to get up with her. At 4am. Every morning.

Alice has had a very bad cough these past few weeks and has also been up all night, howling away. It’s been great fun. However, she’s now on antibiotics so hopefully she’ll be ok soon.

In all, I’d say that life’s not too great at the moment. Me and Shannon have our problems that we – I – need to sort out. The fact that we get no breaks, that we have constant demands on our time and attention, that we get no sleep, that we’re always sad and angry doesn’t help. Plus the fact that there hasn’t been much work on recently and that we’re both here in the house, not getting stuff done, never having the time to get stuff done. That we’re worried and lonely and isolated and falling apart and heading towards poverty – just as all the research shows that happens to families with disabled children. We’re a fucking clichĂ©.


12 comments:

  1. Paul. Words are weak and there isn't anything I can say, except to say hang in (all of you). I know it's easy for me to say and I'd hate to say anything crass because I can't imagine what you are all going through. But it sounds as though Maggie is one hell of a fighter! My thoughts are with you all.
    Cheers

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  2. Oh Paul .what a desperately sad and helpless situation.please hang on to the good moments, the smiles and the little steps and the fact that under all the sadness is real love. Your children are lucky to have you both.forgive me if my words are clumsy butJust hang on in there and ask for help from anyone who can offer it.

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  3. I agree with the above comments, it's hard to know what to add except that there will be good times, too, though I appreciate it doesn't feel much like it at the moment. And of course you're welcome to come visit whenever, in whatever permutation. We'll get up your way soon to say 'hi'. Hang on in there, love to all. Matthew x

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  4. Hi paul and shannon, ive been folowing your posts for a long time through a link off mamma lewis, i totally understand what you are going through, its isolating, no support, no help, constantly having to fight tooth and nail round every corner even for the simpliest of things cause people cant do there jobs, on top of all that housing issues cause they are a complete waste of space, etc etc, no sleep, taking shifts, survival of the fittest and now the pressure of having ti get up for school too !! And then school asking if you wouod like to attend a creative workshop! Lol...erm so where do i fit that in then?!!! Im sure you know the score! You arent alone but you are alone if you know what i mean!! Our son is nearly 5 now and has cerebral palsy (spastic) a hip subluxation, microphaely, associated problems and to top it all off started having grand mal two hour pronlonged seizures starting in april and ambulances and hospitalizatiin everytime, very very frightning, he starts school part time starts late cause of his last seizure and then ends up off for two weeks due to catching anothwr cold from school which appears to be a trigger for seizures and has anither seizure!!! Argh. I do understand totally what you are both going through and many a time i read your posts and sit here in tears as i can identify with you both. On a positive note you have two beautiful daugjters there and who to say that maggie wont talk in the future, or walk, weve been told that with nathan but hes becoming more vocal everyday! Much love xxxxx claire xxxx

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  5. It is such an isolating situation, I know, and all the words of support and "consolation" in the world can't ever make up for the loss of what you hoped for for Maggie. And nothing is worse than that moment when the "outlook" is laid bare for you by some "professional" at yet another appointment. But there is a future for Maggie and it will be bright and filled with laughter because she is just that kind of child and she has you and the rest of her family to love her. In spite of whatever label they place on her (nobody yet can tell us what type of cp Tom has - it's kind of a mix they say) she will find cool stuff in life. Sometimes it will be the same stuff as Alice, at other times it will be something that's different and special to her. I know that none of this really makes much difference to how you are clearly feeling right now and I wish I could help. Please come and stay with us soon. Or maybe over Christmas. I am refusing to cook for all the masses this year so will be up for some company before or after the day. We are also getting a Hearing Dog for Olly soon which I'm sure the girls would enjoy. (Well trained so won't leap all over Maggie or Tom.) Or just come over for a sleep where we could at least do some of the night caring maybe??? I dunno. Whatever you think. Love to all Helen xxxxxxxx

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  6. I'm with Helen on that, Paul and Shannon. Although I can't ever understand in the way she does, I can offer some company and some night duties.

    Please come soon.

    Love Sal xxxxxx

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  7. Paul, on the work front, have you tried to get anything commissioned? I'm thinking Guardian Family supplement or similar. Also, I may still have some contacts at Scope's fundraising department who could use your skills in their campaigning. Let me know.

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  8. I think Maggie will surprise you with how she will cope with her disability.Don't presume she will be bitter.Our daughter was diagnosed as Type 1 diabetic when she was four.I know this is nothing like your situation but it is still something you don't want your child to have,to be faced with a lifetime of injections.We always encouraged her to do what she could and you know she has never been bitter.Your approach and attitude will rub off on both the girls.Be as positive as you can be.It is a very difficult situation and sleep deprivation is just awful.Accept help.Some has been offered.If I lived closer I would offer.Try and snatch the odd hour for you and Shannon too.Thinking about and thinking what a cruel world it is.

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  9. As you now know that Maggie will be a communication aid user, the next thing you want to do is to get in touch with 1Voice who work with families with children who use a communication aid. A big part of 1Voice is the involvement of role models - adult communication aid users. Quite apart from anything else, they will demonstrate to you really very quickly that your expectation of anger, sadness and bitterness on Maggie's part is - well - unlikely, I think it's fair to say.

    I'm a communication aid user as well although I'm in the small minority of young adults who use AAC (alternative and augmentative communication) but don't have CP. It's a rich and complex world out there and Maggie will live in it like we all do. I live independently now, in a bungalow in central Manchester with 24 hour support. If you'd like to talk about what adult life might look like for Maggie, I'd be happy to walk (wheel!) you through the basic logistics of it all.

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  10. I've only met Maggie once - but was struck by how engaged she was with the world around her and how keen she was to communicate (she knew right away that I'd joined the conversation and immediately reached for my hand). Sounds like Becca is a good contact and some for of AAC device would help her.

    Now, tell me how I can help - what can I do to give you some support? I will call you.

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  11. Paul
    I think I wrote to you before. I was in hospital due to grief and self blame which turned to madness. I could only care for my disabled son was unable to care about myself or my husband. He left , is still involved father. I would so love to have him back. I hope so much you can put yourselves and each other first just enough to maintain a solid marriage. I hope I am not being a presumptuious ass
    If i am I know Paul will tell me.
    Andrea

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  12. Paul
    I think I wrote to you before. I was in hospital due to grief and self blame which turned to madness. I could only care for my disabled son was unable to care about myself or my husband. He left , is still involved father. I would so love to have him back. I hope so much you can put yourselves and each other first just enough to maintain a solid marriage. I hope I am not being a presumptuious ass
    If i am I know Paul will tell me.
    Andrea

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