I really don't expect anyone to wade through all this...unless you know something about disability, in which case, please do!
It was a Friday afternoon when it all went wrong.
Just over a week before, the frame on Smiley's buggy had broken for the second time. It went straight back to distributors for review and repair. But I'd been very clever. By having a buggy and a wheelchair, Smiley would always be able to go places. Or so I thought.
Since the buggy was gone, I'd had to use the wheelchair for everything.
And just to remind you again, this is a wheelchair that has no accessories, and is so big that the metal casing on the front wheels takes lumps out of doorways: the ones that you can actually get it through.
It has a special moulded seat that I don't think is designed to cope with Irish downpours, though she does sit beautifully in it. And, as I discovered, it does not travel well....
This is the wheelchair firmly tied down in the car before we set off.
During the ten minute trip to the supermarket Smiley sways and bounces around in the back and when we arrive the straps look like this:
That does not look right to me. PROBLEM ONE. And it doesn't happen with the buggy. But there are apparently no reports of this happening with other wheelchairs so I've got to traipse down the country to the place where I bought the van to rule out the straps.
(I haven't blogged about this before as I was trying to calm down. It seems I am still not succeeding!)
So back to Friday afternoon.
There has been an incident the previous day when the handle of the wheelchair had unexpectedly dropped suddenly, and then one of the adjustment handles snapped off when I was trying to fix it. This might not sound much, but imagine the handle of your baby's buggy dropping just as you are trying to manoeuvre it off the pavement. Then it happened to the bus driver on the way home from school on Friday and the other handle broke off and the brakes stuck.
So I was stuck on a Friday afternoon with a potentially broken/unsafe wheelchair, no buggy and no idea what to do.
I spent the rest of the afternoon on the internet, and on the phone to anyone who hadn't gone home. An urgent call was made to an engineer to come and look at the chair, but I was told it probably wouldn't happen until Monday. I couldn't find anywhere in Ireland that hire supportive wheelchairs and buggies for children like Smiley who have a weak upper body: The Irish Wheelchair Association has standard adult wheelchairs for hire but they would not be suitable.
I could find no plan in place to deal with this situation. PROBLEM TWO. It seemed that to be completely safe, she should have spent the weekend in bed! Would this be acceptable for a non-disabled healthy teenager?
Of course she didn't stay in bed...I took her out in the wheelchair very carefully. And she got lots of floor time.
On the Monday the wheelchair was 'fixed', but it still rocked around the van. Soon afterwards I was loaned an ex-demo buggy, so everything was looking up.
But then the bad news started to trickle in. The buggy can be repaired, but it seems that Smiley is just over the maximum weight limit, which means that the professional therapists recommend that she should no longer use it. PROBLEM THREE. In fact at a meeting to which I was not invited, those attending noted that she is too old to be in a buggy. I can understand that. I worry that I am babying her. But she is not aware of this. She just enjoys all the opportunities it gives her and us. There are very few restrictions - apart from not going on beaches (now) and mountains *sigh*.
But perhaps it's time to accept a life indoors unless there is a guarantee of a rain-free day? Don't expect Smiley to be happy in one of those silly wheelchair capes with the rain running down her neck...
I really don't know what to do.
That seems so unfair, if she is happy in it and it gives you all opportunities that you wouldn't otherwise have, then surely the buggy should be suitable? I feel indignant and sad for you both. Wish I could help.
ReplyDeleteHugs x
@Suburbia - I think you deserve a medal for getting to the end :) It is true that it's pretty much culturally unacceptable for an adult to be in buggy, but then my daughter is not like other adults! x
ReplyDeleteWhat is it with not inviting the parents to the meetings?!? I am fuming mad at all of this. The indignity of it all. Grrrr...
ReplyDeleteI kept up a progressive stream of, "OMG, OMG, OMG," while I was reading.
If you guys are OK with a buggy then I don't see the harm in it. Honestly, there are worse things in life and if you both are happy then it's pretty much a done deal.
I have no more words to express my disappointment and frustration for you. I can't imagine how hard this is on Smiley.
Why is it unacceptable to not be able to use a buggy if that is the easiest form of transport for you both. As you say Smiley doesn't care what she is in just as long as it gives her opportunities to be out and about.
ReplyDeleteIt is just other peoples peoples judgements on something that they really don't know about or should poke their noses into.
Makes me spit feathers that because of somebody else's preconceived ideas Smileys activities have to be curtailed.
Surely her quality of life should be the main issue not what she is sitting in.
Ok, going to sit in a dark corner now and breath...... xx
I don't know anything about disability and mobility but surely unless it's detrimental to Smiley's health I'd say sod what they say!
ReplyDeleteThe chair, the buggy... they're mere tools for enabling your daughter to get around. And getting around and not being stuck in doors is a basic human right unless you've committed a crime.
How dare they judge you and curtail your daughter for their own silly notions? xx
Use the buggy and dare anyone to stop you. I think restricting someone to life indoors rather than letting them go out in the rain(especially as you live in Ireland with more than it's fair share of rain) is babying them.
ReplyDeleteIf a buggy gets you two out and about with less problems, backache and issues, then I don't see the problem with it.
ReplyDeleteUnforgivable to be left over a weekend with unsafe wheelchair. These people in charge have no idea, no way should meetings be held without you there.
I suspect it's time you called in an advocate for your daughter to help you get invited to those meetings. There will be a local one and your welfare rights people could put you onto them.
The multiple repair needs and not being invited to the meeting are separate issues. If you HAD been invited to the meeting, how would this have been better? In part, you expect the professionals at the meeting to give their opinions, no? You do not have to accept their opinions.
ReplyDeleteWhen I have shared with a parent the social effects of a (called stroller here) buggy, it is still their prerogative to go ahead with ordering a stroller.
Looks like you made a good choice for managing Smiley for a temporary confinement inside. Hoping the repair issues are resolved soon.
More from me off-blog.
The age old battle with equipment. We ourselves have found ourselves with a weekend without transport before and it just, firstly saddens you - how much more do you need it pointed out to you that you have a child with disabilities who relies on equipment, then maddens you as it becomes even more abundantly clear that the system just DOES NOT UNDERSTAND the intricasies of those with such severe physical disabilities. My son can not do anything without equipment, so god forbid anything goes wrong out of 'office hours'. And I know my friend had to wait TWO weeks to get her sons' wheelchair fixed, to the point she could not even get him to school. Feeling your anger. You would think in a world with the technology our has access to those with disabilities still would not be at SUCH a disadvantage. All we can do is continue to fight for their corner. I write a feature called The Disability Diaries to try and raise awareness of such problems, because apart from us, who knows that due to a broken part on a chair our child can't get out for the whole weekend or longer? Glad you blogged about this, I may refer to this blog post very soon!
ReplyDelete@Lizbeth - love your comments, you are always on my side xx
ReplyDelete@Helen - it is a tricky area, and I hope to talk to the therapists who expressed this opinion and ask them to justify their reasons! Xx
@Beadzoid - you're very good to read all this and thanks so much, I didn't expect so many people to be pro-buggy xx
@Midlife Singlemum - Welcome back and I like your perspective - will definitely be using it!
@Scottish Mum. - the weekend issue really bothered me too, and I would have happily HIRED a chair. But no-one could help me find one thst was available! Yes my daughter can't use a normal wheelchair, but she just needs a bit of extra support. I am a annoyed about the meeting, it doesnt seem right that my daughter's needs are being discussed in my absence - and perhaps she should be there too? I don't know if all those who attended have actually met her.
@Barbara - I hope that your blog is not going to go completely dark, as it is such a useful resource. Regarding the meeting, I would have liked to have been there to know what was being said and in order to be able to contribute. I only heard about it by chance from one of the attendees and I don't know exactly what was said. I will go and check off-blog in a minute. Thank you so much for your comments once again.
@Lynsey - thank youy so much for your comment and your understanding. In the back of my head was the fear of what would have happened if the wheelchair had completely broken, perhaps over a bank holiday weekend, maybe when we were away from home, even just on a day trip. What then?
Oh, i wouldn't want Smiley in one of those damn capes either - unless it was custom made with stars and lovely colours and it sang and danced to keep you both entertained.
ReplyDeletePeter has never used a wheelchair, but i have friends whose kids do. Problems, problems.
Hope this week is better for you!
Grrrrr! Just so so angry about so many of the points you raised! How typical too that both woul break at th same time. Grrrr!
ReplyDelete@Julie - I think you'll have to design the all-singing dancing cape :)
ReplyDelete@LittleMamma - Grrr is absolutely right x
I am so very angry for you and Smiley!! How dare they have a meeting and not invite you? How dare they make those sorts of decisions without you?! I'm indignant. Please don't worry about babying her!! By taking her out-you give her the world! And you give the world the gift of seeing your girl enjoy it. I'm racking my brain to come up with a solution for the buggy...I will think of something! Hang in there..(((())))
ReplyDeleteI can't understand how it could be culturally UNACCEPTABLE to have Smiley in a buggy, out and about and happy, and perfectly ACCEPTABLE to have you guys stuck indoors because of not having the right equipment. I really hope this gets sorted quickly!
ReplyDelete@kathleen - I give her the world and let the world see her, and judging by the reaction of people,especially curious children, most of her peers must just not go out x
ReplyDelete@LisaS - I think you got it in a nutshell :)
I can't understand why they would discourage the use of a buggy that allows her so many outings? I get the safety element but surely there's an alternative? A happy medium? Is their nothing for older children? Or a smaller lightweight wheelchair perhaps?
ReplyDeletexx Jazzy
@Jazzygal - I'd be lost without the internet - with help, I'm getting a list of options together xx
ReplyDeleteI can understand it, in a very general way, that we as parents should be treating our children age appropriately. However, circumstances mean that this should be seen as a general ethos rather than a blanket approach. I moved Dominic from a SN pram to a wheelchair precisely because people were babying him, but he's tiny, and cognitively aware, and it's pretty gutting when an 18 month old pats a 4 year old on the head and says "baaaaaaaabbbbbbyyyy". But we struggled (and are still struggling) to find a manual wheelchair made for such a squirt, when really he fits a pram much better.
ReplyDeleteThat said, I have recently found a fabulous company that custom make rain hoods for prams. There is no reason why they couldn't make (a really nice one) for a wheelchair too, with a matching footmuff for colder days. You could always pick age appropriate fabric to stop anyone moaning :-)
Thanks for adding such a great post to the blog hop x
@Renata - yes , Smiley was called a 'baby' for years by small children, and now you still hearing them asking their parents "why is she in a buggy?". Love the idea of age -appropriate fabric, that's a new one to think about!
ReplyDelete