MY LEARNING DISABLED CHILD IS NOT A BURDEN ON SOCIETY

 

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On the contrary, GG contributes significantly to the world we live in and genuinely helps to make it a better place. It would be so easy to launch into stories of inspirational Paralympians, people with Downs Syndrome running their own business, or the building evidence of genius’s and talented artists who were likely on the autism spectrum but it is so much simpler.

GG brings immense joy to our lives and to those around her, she enjoys the simple pleasures in life and reminds us what is important. GG is not encumbered by financial concerns or fears of what is happening in this world but revels in the here and now, something we can all learn from. Being able to giggle at the daft things, she keeps alive the best of toddlerhood lurking inside us all.

GG is also completely non-judgemental – she takes people as they come. Racism, ageism, fat-ism, none of this would even occur to her. GG is the only person I know who honestly has no unconscious bias.

Along with most children with disabilities, GG demonstrates a level of bravery that I could certainly only aspire to. I am ashamed to think back to the levels of complaining when I suffered with back issues on and off through my 20s. It wasn’t nice and the physio was not fun. GG does physio every day. Climbing stairs is always hard for her but she does, all the time. Epilepsy is hideous and whilst I am still recovering from the aftermath of a seizure and my reaction, GG picks herself up and carries on with her day. If the rest of the human race was half as resilient as my daughter, this world would be a much better place.

The other fabulous trait that makes me smile all the time, is a complete disregard for materialistic possessions. Don’t get me wrong, GG has many many toys as we feel compelled as parents to surround our children with gawdy plastic items. The truth however is that GG is completely happy with her baby doll, a pram and an apple. Even the tooth fairy brings chocolate to GG. Yes, she will also be entertained by the iPad but it isn’t an important factor in her life, and TV is for wimps who feel the need to sit down!

If the view of ‘contributing to society’ is obtaining a degree, having a distinguished career or excelling as a football player then no, it is unlikely that GG will do any of these things. However, for the majority of people, the important things in life are not achievement or materialistic based. Caring, sharing joy and valuing other people are what matters and GG exhibits these traits more than most.

Despite the huge progress in attitudes to disability and having come a long way from when disabled people were hidden away, it is a sad position that I, and other parents, find ourselves having this debate. However when I have heard so many challenges as to why public money should fund services to disabled children, it cannot be ignored. Early intervention, good education and enablement therapies ensure that disabled people are empowered to contribute to society so let’s fight to continue to make provision better.

 

Delivering a Diagnosis

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For the 6000+ children a year born with an undiagnosed genetic condition, and their families, a long awaited diagnosis can be both a positive and negative experience. Seeking the elusive unifying diagnosis that often ties together a host of conditions, is a long and difficult journey – combining the hope that diagnosis may bring, with the fear of what it may mean.

In recent months, many families have been receiving a diagnosis through their genetics teams – the DDD study, 100,000 genomes and incredible genetics progress is giving more and more families the answers they seek. However the experience of those on the receiving end is varied, sometimes it is handled brilliantly but occasionally the way news is delivered is not ideal.

Examples of this include a letter landing on the doorstep with news of a diagnosis. Imagine waiting 5+ years for answers and to open a letter in the middle of breakfast with what is, to you, monumental news. On occasion, an invite to an unexpected appointment with the genetics team, with no explanation and weeks away, which results in high levels of tension and anticipation. Even attendance at a routine appointment with news delivered out of the blue.

In our case, we received such a letter and called to ask if it was a significant appointment or a routine review. We were told the latter, arrived at the appointment with 2 children in tow only to find that there was indeed ‘big news’ – this was broken to us whilst we fought to keep GG away from the taps given her obsession with water. As it turns out, the diagnosis found was not significant for GG you can read about the ‘Almost Diagnosis’ here:The ‘Almost’ Diagnosis

So, based on our experience and feedback from others in the SWAN world, here are a few pointers to those delivering news of a diagnosis to families:

  • Please pick up the phone! Let us know that something has been found that may or may not be of significance and that we should meet to discuss
  • Offer an appointment in a timely manner so that we are not waiting weeks and months for really important news
  • Ensure you provide as much information as possible about the diagnosis and what it could mean – we will google it anyway, so we value you being honest about the implications
  • Be clear if there are further steps to confirm the diagnosis and what happens next

We know that the science is fascinating to you and the progress in your field is incredible, but for us, this is about our child, our family, being sensitive to the impact such news can have is really critical. We also recognise you are incredibly busy and not best placed to provide post appointment support, but please do point families in the direction of those that can help – some ideas are below.

Finally, thank you from the bottom of our hearts for working so hard to help us find answers. A diagnosis, no matter how rare, is really important to us and our children.

Further support:

If you come across families that might benefit from extra support you can point them in the direction of:

SWAN UK – www.undiagnosed.co.uk

Unique – http://www.rarechromo.co.uk

Rare disease UK – http://www.raredisease.org.uk