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Why Funding for Programs That Help Kids With Physical Disabilities Matters

My daughter, Tiny Miss H, has joint hypermobility syndrome and hypotonia. It means she isn’t as physically able as her peers.

After years of intense therapy, she has technically reached her major milestones, but she is neither confident nor consistent with her abilities. As a result, mainstream activities are often not suitable for her.

We work hard on her physio exercises — we have equipment in the playroom and incorporate therapy into her play all the time. We work hard. We make it fun and get results but it doesn’t compare to being out and about, socializing and having the variety of classes that most children are able to access. Therefore, we attend a variety of activities outside the home to support her development as well as give her some fun.

She takes part in a mainstream ballet class and this works well. At this age it’s fine because she’s in a class with children younger than her who are at the same level. As she grows older, we will see whether the difference in her ability and stamina impact her ability to keep up alongside her peers.

She also takes part in mainstream gymnastics — the exercises are adapted for her and she takes breaks to fully rest and make sure she is not overdoing it. There is a range of abilities and ages, so at the moment, she’s not too conspicuous in her differences to the other children. The classes are very taxing for her, loud, crowded, fast-paced and hard.

She is beginning to notice her differences and comment on them. They are making her sad. This seems to impact her self-esteem and confidence which are already shaky.

The teachers worked so hard with her, she was able to achieve an assisted forward-roll in class and get her first certificate. She hasn’t been able to do a forward-roll since. However, the boost to her self-esteem by being awarded that certificate far outweighs the importance of whether she actually qualified for it. It works for entry level at age 5 and I’m OK with that. But as she gets older and her peers progress at a rate she can’t keep up, what will happen to her self-esteem? That’s why boosting it now is so important for me and I’m so grateful to the teachers for their generosity.

Tiny has also been attending a motor-coordination class referred to by the physiotherapist. It is targeted for children who need additional support and have differing abilities. She loves it. She always goes in enthusiastically and works her hardest. She seems relaxed and like herself.

The activities vary each week and she can see her own progress. It’s a smaller class than any mainstream classes she participates in and as a result Tiny gets the individual, personalized help she needs to complete each activity. She also gets time to take things at her own pace. And, she is the same as the other children who are also her age. She seems to recognize their struggles in her own and seems to recognize their achievements as much as her own. She’s with her tribe, she belongs. It’s a lovely atmosphere with kind, supportive staff who have been specially trained and who obviously care about the children.

This is currently the only input we get from physiotherapy. I manage her therapy at home, and to be honest, I am not qualified to know how to progress each exercise or adapt it to target new areas safely. To be quite frank I’m making it up as I go along. I’ve learned loads from watching the professionals and I’ve implemented it successfully at home, but that is no substitute for the years of training and qualifications the experts have. I don’t feel I’m enough for my daughter to keep progressing.

Sadly, until she falls behind significantly, we won’t get outside help. There just isn’t the funding. She’s not “disabled enough” I’ve been told. I feel as if I’ve shot myself in the foot — I’ve done so much to help her she is too able to get help, yet she still needs help. We slip through the net. It feels as if we are punished for our hard work and proactive early intervention. The lack of recognition for her hard work and persistence at her therapy is appalling and instead should be applauded, she deserves recognition for her incredible achievements. For me, fire-fighting after we have hit rock bottom isn’t an option. My whole philosophy of parenting is that “early intervention is key.” After being told she would “never likely being able to walk,” with support she was able to walk — that didn’t come from nowhere. Without constant intervention she is likely to fall behind and cease to thrive. I need support, I need help and I need guidance.

So I was desperately sad to find out today that the motor-coordination program is stopping due to lack of funding with immediate effect. Tiny cried when she found out. So did I.

It is not just about her physical development, it is about her emotional development and her mental health. It’s about so much more than being able to stand on one leg with her eyes shut. It’s about being able to stand on her own two feet among her peers. It’s about self-worth and it’s about giving these children an equal chance at achieving their potential.

If you are in a decision making position with regard to funding of any sort, please understand the full consequences of your tough decisions. It really matters.

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Thinkstock photo by: KatarzynaBialasiewicz

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