Saturday, 23 November 2013

A lovely fun day

We've had a brilliant day today. This morning Seth had riding. He rides every Saturday morning with Wilby Riding for the Disabled. For the last few weeks Craig has taken him on his own and I've had the pleasure of doing some cleaning (weirdly it is a pleasure, too, cos it's so nice to have the time to make the house nice. Plus I can add it as excercise to my weight loss mobile app!). I'm told Seth did his usual of laughing the whole time he was on the pony. It makes me smile just to think about it.

This afternoon we went to Tunes Together. This is music therapy - there are 5 other children that attend and it's all about making music and using it as a way to communicate. There is one lady (Suzanne) that runs it with the support of what I imagine are music students and/or music therapy students who are all talented and very keen. Its 2 hours, once a month and we have it for a year. And Seth absolutely loved it this afternoon. The biggest thing about these sessions is how they are geared toward the child and responding to each child individually. Seth and I went to music therapy when he was pre-school and this is something else again. Suzanne is not content with having the parent hold the child's hand and bang the drum in time with the song. She wants the child to interact with the music themselves and any independent response is pounced on and encouraged. So, for example, at the beginning of the session we passed a drum around and the children were encouraged to bang it and say their name as part of a song. Seth nowadays might feel the drum but is unlikely to hit with any strength to make a sound. And he is very unlikely to hold and use a drumstick. Plus, he's never appreciated having his hand taken and forced to doing something like that. But he does enjoy using his feet. Suzanne noticed and put bells around his ankle and he was able to fully participate in making music, moving his feet in time to some of the music and stopping and starting when the song stopped and restarted. And boy did he giggle! And we were able to sit back and let him participate on his own terms.

Another example of how the activities are entirely responsive to each child was the first session we attended last month. The children were encouraged to play an instrument and when they hit the drum or shook the bells or pressed the pre-recorded switch the group played their instruments. When the child stopped, the group stopped. A lovely way of allowing the child to control what was happening. One of the children didn't want to play an instrument but instead wanted to bounce and slap his feet on the floor. So we were encouraged to join in with this instead and he loved it.

So you can tell I'm pretty impressed. Galaxy Hot Chocolate have a charitable fund and they are giving financial awards to a number of small, community based projects. Tunes Together is hoping to get some of this funding to buy more equipment but they need votes. So please visit Galaxy Hot Chocolate Fund page and vote for Tunes Together.

Monday, 18 November 2013

Learning to beat 'the wall'

A friend shared this link:

20 things parents of kids with special needs should hear

I especially liked the reference to running a marathon because I certainly felt that I've 'hit the wall' recently. The wall is the point in the marathon when a runner's glycogen (stored energy) within the muscles is depleted, causing sudden fatigue and loss of energy. I find the analogy helpful and it is possible for the marathon runner to beat this wall by being prepared for it: eat right and train at the right level.

Well I've been trying harder to eat right and I've joined a gym so that should help with keeping the energy levels up. I'm certainly feeling better for it. But it's not just that. Seth's birthday is coming up and that's always a difficult time for me. It should be a celebration of his birth but instead it's a reminder of a very dark time. Craig and I have been pushing forward ever since then and we need to be able to keep motivated for Seth. It certainly helps to be able to celebrate some really fantastic achievements like Seth's swimming.

Last week he swam a whole length unaided! He swims on his back kicking his legs like a frog. He came home from school with a certificate and I'm extremely proud.

Seth has also been playing with a new toy we have on loan from the Cerebra lending library. The toy is a bubble tube which changes colour. It come with a switch and a microphone so you activate the bubbles by pressing the switch or even by making a noise. You can even change how long the bubbles go on for to encourage the child to have to press the switch again. I recommend the library - it's free, you just register and choose the toys you want. It's very popular so you do have to wait. But it's worth it. They even arrange for the toy to be collected again. The only thing I would say is that the switch that comes with the toys isn't very sensitive and Seth doesn't have the strength to use it. However, I was able to get hold of an adaptor and plug his switch in instead.

Friday, 1 November 2013

6 years in

I'm full of cold. Again. And I'm so damn tired all of the time.

I spent 5 years pretending that  I could carry on, unchanged. But this year the cracks began to show. I think that moving house was the catalyst: we now live in a house that we enjoy, with the space and quiet to relax in. That has helped in that I have stopped being a drill sergeant forcing us to go out and 'do stuff' every weekend. We can simply walk round the garden and give Seth as much fresh air as he needs, and give him physiotherapy at the same time. However, I've stopped wanting to do anything: the act of going out is even more energy than I can manage.

We have babysitting options. We stopped using our Direct Payments to go out for a couple of hours once a week, and instead store it up to do something all day once a month. We were finding that we were forcing ourselves to go out of an evening when we were too tired and wanted nothing more than to curl up in front of the telly.

We've got the Babysitting service - a bank of childminders who offer their service to sit for your special needs child in the evening. Out of 30 or more childminders, only one felt they had the necessary experience to babysit for Seth. But she is fab so no worries there. To book her I simply have to email the service with the date I need. They then email her to ask if she is available and, once confirmed, we can then sort out our evening plans.

We've even had friends offer to sit with Seth if we need to get out one evening.

That all sounds really simple while I'm typing it. And yet it feels just too much effort. And maybe right now that isn't such a terrible thing. In the 5 years after Seth was born, I went back to work (albeit I dropped to part time after 6 months), I was an active member of the local residents association, I attempted to rekindle my massage business and I joined a roller derby team, volunteering with their marketing and fundraising, as well as trying to learn to skate. Should I really be surprised that I can't find the energy to do any of that now?

I thought that things would get easier as Seth got older but in a lot of ways it actually feels harder. I told a friend recently that it feels unrelenting - there is no break and even trying to get that break involves effort so isn't so much a break. I don't want to have to organise my break, I want someone to come along and just hand it to me. Last week I had an evening out with 'the disabled mums'. A group of friends I gained when attending special needs pre-school activities. We go out for a meal every couple of months and it's really my turn to organise the next one but it feels lovely and indulgent to just be told where to go and what time and all I have to do is turn up. & I know I've posted about this before but we all spend the whole evening laughing, mostly at ourselves. They are my life line and have kept my sanity for the last couple of years. If Craig had something similar I don't think he would have been signed off work with stress this past month.

Where is this rambling, morose post going? I suppose that while I know it's okay to just stop, to not try to take on everything and focus on home, I don't seem to be feeling any better by doing so. I'm just as tired, struggle to get up each morning, go to bed weary. It isn't any easier trying to organise going out as a family because it's a roll of a dice whether Seth will be happy, in which case we have a lovely time, or whether he complains, in which case it's just horrible. I think I understand him and then I realise that I've gained nothing. We've achieved a lot, but that means we just face the next challenge. Brings me back to the unrelenting comment again. Seth turns 6 next month and I suppose I thought that things would be different by now but in so many ways they've really stayed the same.