Couple weeks back on my morning facebook trawl I stumbled across a blog called “ordinary hopes” by a fellow special needs mom(https://ordinaryhopes.com/author/challengingexpectationsblog/). I had a look and liked what I saw – and I loved loved loved the name.
And it made me think. How different the dreams families like our have are from those of our peers with able bodied, healthy children? In the special needs world, the disabilities can be very different -ranging from someone like Freya with “only” airway and respiratory issues to children on the autistic spectrum, to those suffering from both physical and learning difficulties. Are the aspirations we hold miles apart too?
Yes and no.
The deepest wish most of us hold is that our children would thrive and have the best quality of life they can, as long as they can. Every special needs parent I have ever met wants this. For some it is a question of getting the right support in place, for others is a more complex quest, that can go on for decades. We fear difficult decisions we know will come our way in the future and hope we have the strength and wisdom to make the right decisions for our kids, however hard they may be. We suffer from anticipatory grief and hope setbacks our kids face are temporary. In our hearts most of us believe quality trumps quantity, but crave for more time with our children, however fragile they may be. We fantasise about medical breakthroughs and we pray for miracles.
We want our children to get as many opportunities and experiences as their healthy contemporaries. We want them to go to nursery or school. We want them to have friends. We want them to be able to have holidays (and yes – we desperately want to go on holidays too!) We want them to be able to go out in public more – something that is a lot harder than most ever realise. We want them to have accessible facilities like public transport and toilets where larger, less mobile kids (and adults) can be changed with some dignity. When they grow up we want them to have jobs, relationships. We want our children to feel like they matter, that they belong, and not to feel like they are outsiders in the society.
Many of us wake up hoping for a “good day”. A day that does not end up in hospital. A day that does not include feeling frustrated, getting into another fight with professionals failing your child. And for some, a day when their child doesn’t fit, crash or have an episode of self-harm. We desperately hope that the day will be pain free. In the darkest of times, we hope it is another day our child manages to pull through, a day closer to discharge from hospital or even a day closer being able to come off sedation.
We hope that we are able to do our jobs as parents, and as caregivers, so that we all have some quality of life. We all lose a great deal of our independence and freedom by choosing to have a child, whether they have special needs or not. But the truth is, having a medically complex child, is restricting and isolating to the point I could have never imagined. Accessing childcare, respite or other support is becoming increasingly difficult with the government mercilessly cutting from the services to those most vulnerable in our society. So we hope that not only we manage – physically and emotionally – but also hope that we manage to find enjoyment and quality in our lives – a consideration widely forgotten amongst those with special needs kids.
So are our hopes so different? Yes and no. We want our children to be happy. We want them to experience the world and to participate in it. We want to function as a family, as parents, as individuals. We largely have the same hopes, but have more difficulty accessing them.
Want to help it easier for families like ours to fulfil our potential? There are many ways to help. Many families with sick and disabled kids really struggle with practical things that most take for granted, like taking their kids out. Most local children’s hospices have volunteer programs you can join to help families with their day-to-day life. If you do not have the time to commit they definitely take donations. Check ours out at https://www.noahsarkhospice.org.uk/what-we-do/. If you are not a North Londoner you can find your local one through http://www.togetherforshortlives.org.uk/.
Many community projects provide work experience and employment for those with disabilities – our local (https://lordshiphub.org.uk/) one has a lovely café: You can support them, by for example, going for a coffee there. Keep your eyes open for your local one.
Awareness and support of campaigns is also valuable in making life more accessible for disabled kids and adults. Read an article, watch a documentary, have a chat with someone who has special needs or looks after a relative with special needs – trying to see things from someone else’s perspective cannot hurt. For example, I have been following the campaign for proper toilet and changing facilities for disabled (https://www.facebook.com/ChangingPlacesUK/). Not something that directly affects our family, but an important issue nevertheless!
P.S. Little Freya update. We have had a few autumn bugs but have managed them at home without hospitalisations which is a huge thing for us! We are hoping to finally start nursery in the new year and in the meantime hope to enjoy a fun-filled Christmas at home (fingers crossed! Touch wood!).