Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue. Writing about it is my way of settling the mind or venting the anger. It doesn't solve the problem but it helps clear my mind or form a plan. Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place. After that there is just the fiddly task of getting the pieces to stick together.
A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities. We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored. Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages. It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.
A few months on and slowly I feel someone has started throwing us some tools to help climb that wall. The school review saw a referral for a CND put into motion. The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name! With her in place, several of the other issues are now being sorted out. As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.
Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed. What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position. I am a 60kg female and my son is 54kg. To try and pull him back up the bed, against the friction of the bed sheet is no easy task. I don't expect it to be easy but I am always looking for ways to make it easier. To know these sheets have been available but never suggested to me before is quite frustrating. He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.
Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.
On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1. When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well. We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried. But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.
Cue, The Water Genie. This ingenious item is essentially a blow up paddling pool for the bed. It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water. After washing it sucks all the water back out. Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations. No matter what equipment you get to help, they all have something you haven't thought of. For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean?
Another example of this is hoisting. Yes, a hoist is essential and much needed and we could not live without one. But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger. Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat. The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard. Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision. Before you even get to that stage you have to get the hoist sling in place. And that is so much fun.
The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position. To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight'). Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees). The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt). Then all the straps (six in all) can be lined up ready to hook up to the hoist arm. Easy as hell hey?!
But as I said, this post isn't to gripe. I am fully aware in the case of disability, nothing is easy. All these things are just to try and make life easier. And I am so relieved that we now seem to be getting somewhere with it all. Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.
J1 should, this very week, be receiving a referral to a specialist spine unit. This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it. Our job is to ensure he is seen by the best people he possibly can be.
We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).
We persevered and had a very good appointment at wheelchair clinic. For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.
All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1.
And that is the only thing that matters.
This is always going to be an on-going and continuous way of life for us. So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.