Enjoying quality time

Yuen Har Tse, who lives in the UK, talks about the struggle she had to find help to enable her to take her children out.

I am registered blind and have two sighted boys: Christopher aged 4 and Jonathan aged 20 months. I work part-time so that I can spend some quality time with my children.

Parenting help

The biggest areas where I have found I need most parenting help are:

  1. Getting my children out and about outside the home.
  2. Being involved with my children's reading and writing activities. I cannot read print, so have had to adapt ways of reading to them and helping them to write.
  3. Being involved with my children's arts/crafts and leisure activities. I cannot see pictures or what sort of mess they may have made, so artwork takes a lot of pre-planning and adapting for me to do with them.

Here, I focus on the issue of getting out and about with my children.

Getting out and about

On my days off, I like to take my children out for a couple of hours so that they can have a run-around, play freely and experience different play environments, for example the park, children's indoor gym, outdoor adventure playground and swimming. But I cannot do this without someone to accompany me to watch out for my children's safety, and to help retrieve them if they run off.

Using public transport, even taxis, is a nightmare! I have to provide and fit two child safety seats, and then find somewhere to leave them at our destination so that I can fit them again for the return journey.

Exploring alternatives

Initially, my health visitor approached a local charity, Family Friends, who gave me someone for two hours each week. This was great because I knew that I would be able to take my children out to play at least once a week. But Family Friends provide only short-term help, although they extended the length of time considerably for me. Before and after this period of help, I was constantly planning weeks ahead to scrounge help off people, and this was very stressful and disempowering.

I approached social services for help, but was turned down because my children were neither disabled nor of school age, so I didn't fit their criteria. The adults sensory needs team assessed my needs and offered me mobility lessons. But they missed the point totally, since that would not enable me to let my children `off the leash' because I wouldn't be able to watch for their safety.

Luckily, someone I knew influenced the manager of a voluntary organisation providing respite, to take my case on. Again, I did not fit their criteria, but the manager bent the rules for me. This lasted for a couple of years and made my time off with my children more enjoyable. But after she left, I had numerous threats to withdraw the help because I did not fit their criteria. When I had my second child, this gave them even more reason to withdraw help because they had a policy of one adult taking out only one child.

More alternatives

Again I tried social services and got the same response as before. I got the impression that I would get more help if I threw in my job, got depressed and battered my children, or if my children were very disabled!

Again I phoned around all the local organisations whose names sounded like they might be able to help. It was frustrating to find that a lot of them just provided information about other organisations, and that few did any actual practical `doing'.

I then looked at using childminders. But this was unsuitable because they looked after other children and could not commit to taking us out regularly. I tried nanny agencies who said I needed to have a minimum of four to five hours per session. I could neither afford this, nor wanted someone around for that length of time. I tried care agencies, but they were not insured to take us out of the house.

I ran out of ideas again, and managed by scrounging help off people from week to week. Everyone said how well I coped, but I didn't know how long I would keep coping for. It seemed like I was being penalised for coping. I felt quite desperate and powerless about the situation.

Breakthrough!

Then someone suggested I write to my local MP and/or councillor to ask where I was supposed to get help from since I didn't fit anyone's criteria for help, and couldn't find a suitable organisation to pay for help either. I wrote to both. They both wrote to the head of social services and my local councillor vigorously pursued my case with them.

I was given another adults needs assessment, and this time social services acknowledged that I did need some support with my children! They approached my local Blind Society offering funding for my case. The Blind Society accepted. I was shocked since I had approached them directly before and they had turned me down because of lack of resources. And even when I had then offered to pay them, they still wouldn't help.

As I predicted, the Blind Society encountered the same difficulty that I had in finding someone suitable and available to commit to giving me help for a couple of hours on the same day each week. Most people worked for the Society on a voluntary basis and did not want to make a regular commitment. They asked me for ideas and contacts! If I'd had any more of these, then I would not have had to turn to social services! Eventually, as a result of my suggestion to place adverts in a few local churches, we found two lovely women who now share the job.

Positive outcome

Although I have two days off with the children, I asked for help on only one of these days because I thought I'd be lucky if I got that. Now, once again, I can enjoy some quality time with my children on one of my days off work, doing the normal things that sighted mums do with their children, like take them to the park or swimming.

If it hadn't been for my local councillor, I don't think I would have got this help. The council has now asked me to take part in its new partnership board to look at what services should be provided to physically and sensory impaired adults, and how they can be provided.

First published in Disability, Pregnancy & Parenthood international, Issue 48, Winter 2004/5.

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