I'm still pondering this one.
Mog had a majorly bad spasm this morning; really very far beyond painful, everything locked and twisted. I gave her a shot of diazepam and as it took effect she looked hugely relieved and promptly passed out on us.
So, Mog on the floor, clearly not going to school today, we send her bus off without her and with apologies. It's time for Little Fish to go to school too, and Mog is still passed out on the floor, breathing fairly heavily as everything unlocks and relaxes.
Our carer offers to stay with Mog as I walk Little Fish to school. It's a kind offer, but she isn't trained with suction, so I turn it down. She then offers to take Little Fish herself - it's a ten minute walk, LF knows the way (out of our house, turn left, keep going straight and you can't miss it, follow the other 400 children in red uniforms). Little Fish is very excited about this idea, it seems to be a great solution, and we are just getting ready when I decide we ought to call the office, just to make sure the carer won't get into any trouble for helping us out.
Hmmmm, says the office. And then after a few minutes' thought when they want to know why the carer can't just stay with Mog whilst I run Little Fish to school, they decide this can't be permitted as it is too much of a risk. But "Please tell Tia to call us if she needs any help."
So, I gather the comatose Mog up and fasten her into her wheelchair. I bump her along the road to school with Little Fish; the movement disturbs her peaceful slumber and she goes into a seizure instead - which I can't treat, as I've already given her diazepam for the spasm. Bump bump, motorbike and noisy bus, children shouting and bump bump bump, every noise and every bump another small seizure, off to school and back again and then finally she is free to rest and sleep off a miserable morning.
I'm still puzzled though. For a grown woman, with children and grandchildren, with a CRB form and references and, one assumes, a decent amount of experience in walking in a straight line, to walk a small child to school is considered too much of a risk. But to allow that same woman, despite not having the relevant training, to stay with an unstable child whilst I walk to school and back again (so doubling the time spent alone with the child) is not too great a risk. And for me to have to risk fairly impressively big seizures (as well as a return of the spasm) by dragging Mog with me to get Little Fish to school is not considered too much of a risk either. Or is it simply that it would be my risk, not theirs?
And, given the refusal to allow the carer to help, exactly what help did they have in mind when inviting me to call them and request it? Meanwhile, I'm researching lie-flat chairs which would at least make the journey bearable for Mog. Anyone got any suggestions? I think it's going to need to be a buggy rather than a wheelchair as the handles on the wheelchair tend to disappear when you recline it.
UGH! That is really terrible that you had to put Mog and yourself through all that! So what did the carer do to earn her time there while all of you sere gone?
There is a wheelchair that you can have a fully reclining back put on that is very durable and the handles do not disappear ! it is callec=ed the Solaria G3 by Invacare!
Ah no this would have been extra to her regular time; she just offered to do it to help us out.
I don't know about fully reclined wheelchairs but, the Chunc Spica has 160 degree recline and 20 degree tilt in space. The Chunc 45 has up to 70 degrees recline and 45 tilt in space. Chunc Options can be fitted with a variety of seating options. I'm not sure about the arm rests, though.
I love the Chunc Chairs! They are so easy to push, even in fields! Very cool looking too.
I forgot to say, since when did you need qualifications for taking a child to school? That's ridiculous. I hope Mog has a better day tomorrow
Next time - don't phone and let the carer take LF! Too many jobsworths in the world!
Makes you wonder what would have happened had you not phoned the office. If the carer had turned up with LF what would they have done, sent her home again?!!!
Poor Mog & Mum!!
I think I would go to the school office and talk to them in person about the situation. See if there is a form needed which will allow an alternate person to walk LF to school . There must be a way to do this and LORD willing, given some time to sit and really think about it, they will find a way to actually help. Besides, once this task has been accomplish and all red tape cut and hoops jumped through... Musphy's Laws says that it will never be needed ;o)
Hugs & Prayers,
By office, I'm guessing you might mean the carer's office? (but I could be very wrong).
If so, it'll be because it's your risk (I think it's totally wrong, but come up against the same thing).
http://www.kidsupco.com/bingo.html This buggy reclines fully and looks rather good. The European distributor is http://www.hoggi.de/en/index.html
Yemima has severe twisting spasms as well--don't know what to do for her. Can't describe but am sure you understand the fear that comes with it for her. I think of you often.
Love to you, sis.
Swift is right - not the school office!
Thanks for the wheelchair suggestions - the Chunc doesn't work for Mog as it has too many pointy bits she can scrape herself up against.
We have reps for the Jazz and Tom Cross Stroller coming out over the next couple of weeks. I'm not overjoyed about the idea of going back to a buggy, but we have to have something I can push whilst it's in recline, and wheelchair handles just disappear downwards with the backrest.
Tia, I have a couple of friends who use flat-lying wheelchairs - they most definitely do exist. Although in this particular context it sounds like the more useful thing would be to have at-home support trained to do everything Mog needs...
Will research and get back to you. Avoid buggy if at all possible - they tend to make people interact with the occupant as if they were a baby.
I'm so sorry she's having such a bad time. How does she do on Baclofen?
Just saying hi and thank you again.
I was so sorry to hear about Mogs spasm and subsequent handwringing by Agency.When your child has a bad seizure it can leave the parent or carer so drained for days.Therefore you can really do without the extra hassle.Sometimes I scroll through a week or more blogs from you,the pictures are amazing.Thanks again Tia.
I can`t stop thinking about your last blog and hope that Mog is OK.
My son has extremely bad seizures and I don`t cope very well when he has them,I feel so upset for ages after and want to burst into tears.
He doesn`t have them as often as Mog and the reason I am writing this is to thank you for inspiring me and encouraging me to cope better.You cope so wonderfully,and carry on getting the best quality of Life for yourself and your beautiful daughters.Thank you so much Tia.
Sorry didn't mean to worry people by no post yesterday - it just got to bedtime and I hadn't, and sleep was more important! Mog is fine as long as she's not in her wheelchair, and spent most of yesterday pleasantly stoned after all the drugs the day before. She's now reclining on her bath chair on the sitting room floor (it reclines beautifully) and enjoying Joseph and the scents of our baking.
Normal blogging will be resumed when I have something to blog about!
Becca; I do know a few lie flat chairs but the powered ones seem to start at £15K and go on up to even sillier money. I've not found a manual one which I can push whilst reclined without having to double over. The buggy is £1400. That's affordable and we could order it immediately and have it by the summer holidays. I know it's a long way off ideal, but it does seem to be the only reachable way of actually leaving the house very much over the summer just now. I could ask some of the Brownies to help jazz it up into something any of them would be happy to sit in if you think that would help?
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