Monday, 3 March 2008

Decisions, Decisions

Noises off:
Small child in small chair pushing a doll in a pram "NOW DEN baby, you do DO". I think I need to think about how I speak to her!

I have a dilemma at the moment.
One of the children in the nursery class at school has developed an obsession with Little Fish's powerchair controls. At the same time, numbers in the class have increased, so what was a reasonably large space has suddenly become very small and crowded. Staff numbers have increased in line with the children so that isn't an issue, but it does mean there is less space.

School would like me to send Little Fish in her manual wheelchair.That's a sensible solution; she can propel herself around just as easily but without running over vulnerable children and into staff.

But nothing is ever as easy as that. Little Fish has a power chair because she's too small to be using a self-propelling manual chair fulltime without damaging her shoulders. If she damages her shoulders now, she won't be able to self-propel in the future. Additionally, her power chair has a very supportive seating system, which cushions her dislocated hip and protects her spine. In her manual chair, she is slumped to one side and pulled out of position as the chair is too big for her.

It is however the smallest chair provided on the NHS round here. I'm not complaining about that - they have supplied her with the more expensive power chair, something most children her age do not get for free. I send her in the manual chair, knowing that time spent in it is bad for her hips and spine and may lead to future surgery? We're only talking 2 mornings a week, so I could probably compensate for that by letting her use her power chair more around the house instead. Except that then she destroys my walls, my kitchen, my doors...

Or do I send her in her power chair, knowing that she will spend a considerable amount of time with it locked so no one can drive it anywhere?

Or, do I rethink her whole placement and send her to a more mainstream environment? At the moment she spends two mornings in nursery with Mog, and two mornings in maintream preschool. In the preschool she has 1:1 to make sure she doesn't run other children over. At first glance, increasing time there would appear to be the logical solution. 1:1, someone present at all times to work with her, do her physio and speech exercises, check she doesn't damage other children, and so on. But that would mean losing the expertise from the special school. She'd lose her hydrotherapy, her sign-supported-environment, her time spent in education with her sister, and her access to other children with disabilities. Her 1:1 and other staff at the preschool are very willing to have her, but have little or no experience of children with her level of complex needs.

I didn't expect to have this as an issue just yet. I knew that once Little Fish was ready to go to secondary school (age 11 here), we would need to make a decision one way or the other. It isn't practical to be attending two separate schools at that age. But I had thought we would be alright until then. Now it's looking as though I need to make that decision fairly quickly.

As an additional complication, I thought we had two years before I needed to start thinking about school. Now it turns out that most children in her preschool will be starting school in a little over a year, and most of them will be going to one particular school, a school I don't especially want Little Fish to attend. It's not obligatory for her to go to that particular school, but from the age of 3.5, she will have the option of monthly visits to the reception class alongside all the other children from her preschool. So now I have the option of sending her to a school that would be my 2nd choice, but where she would be known by staff and pupils alike before she starts, or to my first choice school where she will start as a stranger in a strange land. What's best?

Little Fish falls between providers. She is too intellectually able to be in the local special school fulltime. But she is definitely functioning at or slightly below the lower end of "normal". In mainstream, she's going to be sitting at the bottom of the class, even with 1:1 support. A split placement seemed to be giving her the best of both worlds. But is it actually giving her the worst of each? It's causing her to miss out on part of each week in both places. Will it be even harder for her to keep up with her mainstream peers, if she is pulled out of school two days a week to access therapies etcetera at the special school? In theory, the special school should be working with her to build communication skills, to improve her physical abilities and to teach her how to make the most of what she can do. In practice, at the moment, the classroom is busy and overcrowded, and she is left to do as she pleases, or compelled to do what the majority of the class needs. It's a shame - this is an excellent school with excellent staff, and I was hoping that it would be the right place for Little Fish. But I don't think it is.

As a short term solution, I am investigating private wheelchairs for Little Fish that might actually fit. I just love this wheelchair made out of lego - wouldn't children have a wonderful time playing with that? Unfortunately, they're not availble outside of Germany. I like the look of this chair too, but again, it doesn't appear to be available in this country. So I think we're looking at the Otto Bock Minny. Also German, but exported. I have contacted a rep, and he is trying to chase up a demo chair for us to try. It's one of the cheaper lightweight chairs too - a snip at £800 for the basic chair (brakes and handles extra). So we'll be looking at trying to fund it, assuming Little Fish fits into it. It's a compromise - but one which will work well for Little Fish in the longer term too; there are places where a power chair is simply impractical. That's an issue I can solve by writing a cheque (or, preferably, finding someone else to write the cheque). The other decisions aren't going to be as straightforward.

Pray for Jophie,


Tina said...

Education battles are the pits! There is no asy way of making the right decision and ensuring everyone else plays their part in making that decision work! Is there a preschool that feeds to the school of your choice? Even if that may not be the best preschool could it be a fair trade off to give her the friendships to take with her to school?
Would the school of your choice do similar introduction days that Little fish could access...maybe a pain to organise for you but could be worth it! In principle We hae hat organisedishor Eve.
Does little fish spend the whole morning in her wheelchair? would it be possible for her to have a Leckey advance for activities? that may give more supported seating alogside the mobility.
we are hoping for 1 day a week at the special chool so they can support the maintreamschool with knowledge of Eve...statementing panel are now questioning that...must have been the day for education nightmares!
Would professionals come into mainstream instead if you chose fulltime mainstream?
Non of Eves group will be going with her to primary...that was not our original plan but the school we wanted doesn't want her! I think it is for the best but now there are concerns about the scond mybe better option...not quite sure what happens here now!

hugs hope things smooth out for you.

Robyn said...

i was wondering whether you could get her NHS chair adapted to give more support. Although after our experiences it is a long and tedious process so you may be better off going down the private route.
Re the schooling, I get you. It seems to be an increasing amount of children who don't fit the boxes that are available out there. I know that at age 9 looking at Treloar for Beth I thought she wont fit in here but at age 10 with some advance in her disease, she suddenly did. But otherwise her choices were very very limited.
Is there not a school that caters for physical disabilities with varying degrees of learning difficulties? A bit like Treloar but not necessarily independent?
The person who told me it gets easier when they go to school was SOOOOOO very wrong!!!

Tia said...

This is definitely the best preschool for her to attend. It's accessible, it wants her, she knows other children there from church, and they have a busy and active setting. The other local preschool can't compare - and the one which feeds into our preferred primary school is further away so we'd be late there every day by the time the bus came for Mog.

Adapting her NHS chair - not really possible as everything we add to it is going to make it heavier and more awkward to use. I have put extra cushions in so her legs are no longer pulled forwards, but that restricts her shoulder movements. She needs less chair rather than more.

There's no local school for children with mainly physical disabilities. There used to be, but with the pressure being on inclusion at all costs, it closed a few years ago. Goldy used to go there before it closed.



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