Making our own fun

It is the Easter holidays and like thousands of parents around the country, we are in the midst of filling the time with fun, Last week I thought we would try a cycling session at a velodrome.

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Wheels for Wellbeing run sessions at the Herne Hill Velodrome where they have a variety of adapted bikes and trikes for people to try, though we actually took our own wheels. The velodrome has a professional track with junior cyclists zooming round at high speed, and a flatter track in the centre where children and adults, with various disabilities or none, were cycling around on adapted bikes or trikes – some hand-powered, some with platforms for wheelchairs, some with two seats.

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There were very friendly, helpful people around. One of whom suggested we try some mittens to help Sam keep his hands on the handlebars. He went and found and gently fitted Sam’s hands into them, and they worked so well that I have since bought some. Then we bumped into a boy from Sam’s school, and Eli, Sam and he did some races round the track. We were there for an hour and it was fun.

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I don’t want to paint too romantic a picture of this outing: because it is actually impossible to co-ordinate the feeding and sleeping routines of three children, Stella was hungry as soon as we arrived so I unpacked Sam’s trike to the sound of her bawling in the car. As the helpful man was fitting Sam’s hands into the mittens, I was breastfeeding Stella under my jumper while walking around and making sure Eli wasn’t crashing into anyone. Elegant it was not.

It was raining for a lot of our visit, luckily not too heavily (not least because I’d accidentally left the car sunroof open) but I refused to let it put us off. If I have managed to get all of us to a velodrome with everything we require and no major meltdowns, we are NOT going home just because we’re getting a bit wet! Even if I have negligently put Eli in a sleeveless coat.

When I mentioned the idea for this trip to James that morning as he headed off for work he said it was a brilliant idea but noted that it was also so ambitious that I might be nuts to attempt it. He’s right, it’s easier to stay at home where everything is familiar, but more fun to go out. Especially to new places, with welcoming people. And lovely for Sam to see a friend from school. A velodrome! Awesome!

I would love for Sam to do more things like this, where he could meet other local kids and make friends. Maybe even without us. But that appears to be near impossible.

A social worker phoned me in September last year and asked if she could come and visit us. I didn’t know what had brought us to to her attention, but she soon came round one day after school. Since she didn’t seem to need to interact with Sam, he stayed upstairs with a carer and I sat with the social worker in our kitchen for an hour while she asked questions and I answered them.

I had never met her before so I described our day-to-day lives. She agreed that Sam needs were complex. She said she could see our lives were difficult, with the tilted head and sympathetic voice that is so irritating. She asked how we were coping, but offered no practical help because I said we were doing okay.

When she asked what help we needed I said I would like some holiday activities, or weekend clubs, or any kind of extra-curricular activity for Sam that was with other kids and not initiated by us. We can find fun things for Sam to do and fill his days, but we can’t create a peer group for him to do it with, and this is what we need help with.

I said that, as far as I know, there are no holidays clubs in our borough for children like Sam and she agreed. I found one last summer in another borough and she said I should keep looking for things like this, and that when I found them I should contact her team in plenty of time and they would see if they could fund Sam’s place. Which was nice of her, because I definitely have lots of time to be tracking down holiday playschemes, liaising with local authority bureaucracies and checking they understand Sam’s condition.

I had heard of an adventure playground in a neighbouring borough that runs weekend activity sessions for kids like Sam, and asked the social worker if he could be referred to this. She agreed that it might be suitable, but warned me that there was a very long waiting list. That is not surprising, because multiple boroughs like ours don’t provide anything like this. Fine, I said. As far as I was concerned, this was obviously the start of the referral process. She had asked what I wanted, so I had told her. She was taking this forward. Right?

Six months later I hadn’t heard anything. Wow, this is taking a while, I thought. But when I called to check, the social worker denied any recollection of this discussion. She said I hadn’t asked for any referral and so she had not done it. She was more interested in telling me that I was wrong than in actually starting the referral. It turns out we need to be assessed, and the assessment needs to go to a panel, and if they approve funding Sam, only then can Sam be put on the very long waiting list for the playground.

I have since had conversations with other members of the team, and am still waiting for an assessment. So we haven’t even got to step one. Meanwhile, each of these conversations has made me feel really uncomfortable – the only way to get anyone to even think about starting this referral is to ask, repeatedly, for help, something I find hard to do. It seems like I am really putting social services out by asking for assistance and I appear not to have the language to make myself understood or to have a conversation without getting upset. I know we are not in dire need, and plenty of people are worse off, but why is it so difficult to access support which other boroughs (and most reasonable people) recognise is important?

I am asked exactly what I want, which I’m not certain of because I don’t know all or any of the options. The whole thing has to be framed in terms of us ‘needing respite’, because presumably trying to help a six year old boy make friends isn’t sufficiently urgent. We probably do need some respite, but even saying that makes me feel like I’m letting Sam down.

So we will carry on organising our own fun, and lots of fun there is to be had. We’ll go cycling again and try to find other welcoming activity groups. Luckily Sam has an enthusiastic brother, carers with energy and initiative, and an easygoing personality, but it would be really lovely, and a huge relief, if our borough showed some interest in helping disabled kids be children rather than ignoring them.

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2 thoughts on “Making our own fun

  1. Hi Jess, social workers can be so hit and miss. We had an absolutely brilliant one for about a year who really sorted out David’s care package but are now back with the duty social worker. I had a call on xmas eve saying she would arrange a visit first thing in the new year. I’m still waiting to hear!

    That’s not why I’m replying though. I thought about training to be a social worker a couple of years ago and to that end bought ‘Social Work – an introduction to contemporary practice’. One of the things that jumped out at me (although unfortunately I can’t find the actual reference) was that good social work was not supposed to be about problem solving but was about helping families to be as problem-free as possible. So finding respite for Sam doesn’t fix a current problem (even if you can manage with your two other children) but avoids a potential problem in the future (the potential stress on your relationship, his difficulty in separating and eventually becoming independent of you). This becomes more and more important as he grows up so that early good experiences of being with others is vital to help him towards independence.

    As another mother who feels slightly guilty at having provision for David when I imagine there’s a far greater ‘need’ out there, I console myself with the fact that David’s independence is the fundamental factor here, and my knowledge that our relationship would definitely have been affected in a negative way and his quality of life much reduced if he hadn’t had been able to forge a life away from me and the family over the years. It has really added to his self-confidence and sense of self-worth – which is what makes all the difficulties and pain he’s experienced worthwhile.
    .

  2. What an amazing day out. Sam looks so happy on his bike. Great achievement getting everyone there and back and sounds like great fun had by all.
    PS Although Stephen Hawking didn’t get to go in outer space, he was nevertheless able to go in a simulated rocket; and of course, because of the non atmosphere he was able to float without his wheelchair; so Eli you never know Sam might get to go in outer space one day.

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