When you become a parent to a disabled child you soon realise that life is never going to be the same again.
I am not saying it is worse, but it is undoubtedly harder. And not for the reasons that most people would think.
We are conditioned to feel “grateful” and we start to feel “grateful” for many of the things others take for granted.
Grateful that a nursery will take your child.
Grateful for a chair your child can sit in.
Grateful that a school will take your child.
Grateful that your child is “allowed” to stay for lunch.
Grateful that your child can join in with class outings.
Grateful that your child reaches the top of a waiting list.
Grateful that a wheelchair is provided, even when it doesn’t meet needs.
Grateful for the few hours of care support that you are offered…
Don’t get me wrong, I am thankful for all of these things, but I should not be made to feel so “grateful” that I don’t feel able to mention when things are not working or when they could be better.
During the first year at school we had many difficulties around inclusion. When my son was not properly included in a class outing (for the third time) I had a meeting with the Head Teacher where she said “We even changed the toilets and car park for Adam and all you do is complain”. I did not feel grateful that my older son could use a toilet when at school so I did not see why I should feel grateful that Adam could.
Was it really “complaining” to ask that my son be treated equally to others? Or did she expect me to feel grateful that my son was at her school?
Adam’s first wheelchair tipped over with him in it. We discovered that it was incorrectly set up and not fitted with safety outrigging to the front. An alternative was offered but was so heavy that he couldn’t self-propel at all. We had to argue for him to be provided with a wheelchair which he could move as well as be safe in.
So when it comes to something as seemingly frivolous as play equipment parents often don’t speak up at all. We are so used to being expected to feel grateful for the necessities that we can’t risk looking ungrateful for wanting more play opportunities.
A park near us had a new piece of equipment installed recently, a wheelchair accessible roundabout.
It is brilliant and Adam loves it!
But when his friends leave the roundabout to play on the swings, slide, climbing frame and other equipment Adam is unable to follow them.
Adam can only safely move between the roundabout and the park entrance. And that is sad!
Shouldn’t a disabled child be able to expect a fun play park experience, just as their able-bodied friends do?
If you took your able bodied child to a park and there was just one swing for them to use, despite a lot of equipment locked behind a fence, how would you feel? Would joy and gratitude be your first feelings?
Our nearest play park with more than one small wheelchair accessible roundabout is almost 100 miles away. It is a bit far to pop to for half an hour and there are no accessible toilets near it. Would it be acceptable if your able bodied child had to travel 100 miles to find a play park where they could play with others?
There is nothing wrong with gratitude.
I am grateful for many things every day.
But gratitude should not trap us.
Are you also in the gratitude trap?
Ordinary Hopes 
Half an hour away… Where we used to live but moved before it had two pieces of equipment put in (thanks to hard work of some local parents)… A wheelchair assessible swim and roundabout however years ago we could get my brother on the zip wire, and also he can play with the basketball hoops. But he can go all over it . We haven’t been yet but we hope to go in the holidays.
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Sorry *swing
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We have nothing for our disabled son , no play area not even a ball pool play area which he loved in school, I fact cannot even get him into a day care centre since he finished school , his now 24 his very small for his age about 29 kilos in weight and in 9 yr old clothes , he & so many like him have been swept under the carpet no one cares.
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It gets harder and harder. My heart aches reading this. I thought it was bad enough with a 10 year old.xxx
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I am ashamed to admit I had never really thought about parks being wheelchair accessible. Thinking about it, at our local park, anyone in a wheelchair wouldn’t even be able to get in the entrance. How awful is that. x
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That is not uncommon. This park that we visited has just had a new entrance created. Beforehand, we would not have been able to get in at all.
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I joined the committee for our village playground as I wanted to make sure it’d be inclusive as possible. The chair is totally up for that and we are going for a more natural innovative play concept, with less formal equipment, and much more sensory play and multi-function installations (including raised water/sand play that can be reached in wheelchair).
There’s a really good document by Play England, Design For Play, that our committee has used as the basis for our brief. In it are 10 principles of play (which includes access for disabled children): http://www.playengland.org.uk/resource/design-for-play/
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We have a park with 1 swing that is locked, no one came when we rang the number to get access to it – I’ve since learned a ‘radar’ key will open it, this is about 15 minutes away.
Another park, similar distance has a small ramped low bridge that a wwheelchair could go over – not exciting at all.
I have no idea where there is a park with more than one piece of equipment in my area – Teessside.
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I am sure those with able-bodied children would expect much more.x
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Some park planners think that wheelchair users are included if they install one of those basket swings. They forget that a 5 foot Mum with a seven stone child will never manage to lift her child. Our local parks guy admitted he’d never thought of that – the companies that sell equipment consider this an inclusive piece.
What’s needed is EDUCATION till they appreciate what is inclusive for EVERYONE.
#notrocketscience
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This is such a valid point. Children grow and parents stop being able to lift.
The park we visited and enjoyed the roundabout at had just had a grand reopening and been on the front page of the local newspaper for having two pieces of accessible equipment. The other piece is a circular rope swing that I might have been able to lay my son on before he was 4 but definitely not since as he would be far too long for it.
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This is so true!!!! I’m always made to feel like this and you have explained it far better than I ever could do!! Brilliant post as usual!!
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“We even changed the toilets and car park for Adam and all you do is complain”.
Can’t believe you were spoken to like that. It’s disgusting.
I don’t have a disabled child and my sons can play on the equipment at any park. That’s something I probably took for granted before reading your post.
However, most of the parks we visit have at least two or three pieces of equipment suitable for disabled children. The parents of disabled children in our area are fortunate in that sense, but they certainly shouldn’t feel any more grateful than I feel for having run of the mill equipment in the park. I really hope you get better equipment closer to you soon. It’s terrible that this isn’t provided already!
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It is always especially positive when people who are not affected by these issues care and start thinking about them. Thank you.x
And yes, the Head was horrendous.
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i live in Melbourne Victoria. I wouldn,t have a clue as to where there is a park for my daughter in her wheelchair. Majority of the time I see the wheelchair swing but that is all and you also have to ring to get a key. I was fuming recently, the council built a dog park next to a childs park with no disability items at all (the childs park that is). I took 1 look and said to myself why couldnt they have put the money into the childs park and upgraded it for children with a disability…..Ridiculous……Even animals get treated better than children with disabilities…We are in the 21st century things should change but no we still get swept under the rug…..This is my opinion anyway but Im sure a lot more feel this way…Its Sad 😦
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I am so shocked and saddened to hear that the head teacher spoke to you like that. No parks near us are wheelchair friendly either.
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Having gratitude forced upon you is very different to it coming from your heart.
It’s horrible that you are being accused of complaining; all you want is for your son to experience his childhood to the full.
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I haven’t had the experience with being disabled or having a disabled child but today I was arguing with my boyfriend about meals at restaurants. I’m a vegan and there are hardly ever any options for me – it’s all fish & chips, steak, Cajun chicken etc. It makes me a bit annoyed because vegan food is so easy to make and arguably cheaper because they don’t have to buy the meat!!! But it seems like I am being unreasonable to think that pubs would provide a few options because most people aren’t vegans. I can imagine it is similar that since most people aren’t disabled then they don’t think to provide the facilities for people who are and who would get a great benefit from using them.
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It isn’t difficult to make adjustments or to think about what changes can be made. A friend’s son has to follow a strict gluten-free diet for health reasons and he finds it very difficult to eat out.
Everyone benefits in the long term when we include everyone.x
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I am so frustrated for you that accessibility isn’t a consideration as the norm! Especially as it would benefit not only disabled children but also able children as they can play together easier! Not to mention parents, carers and teachers.
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I often think of elderly people in this too. My nan would have loved to play in a park in her later years. Maybe a fully accessible park in the grounds of a care home would be the ideal!
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I never thought about gratitude in that way or how we take the simplest things for granted. I actually don’t know where the nearest accessible park is to me. And that’s because I don’t have to think about it which makes me realise how I take things for granted. Glad that you have a somewhat accessible park near but a shame it doesn’t have much more in the way of accessible rides.
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I’ve not noticed anywhere near us, my kids can play along mostly with the other children although my eldest has to be watched closely and can’t climb very well. It’s me that’s the wheelchair user but that’s only been in the last couple of years and you honestly don’t notice these things until you feel their relevance.
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We don’t have any accessible parks with equipment in our city. Not sure where the nearest would be honestly. I empathize with you by being made to feel gratitude for anything and everything. For us it is not just for accessibility at school (which has been an issue) but having assistive tech that meets his vision needs, a multisensory reading program that he is successful at, a behavior program that is implemented by a qualified BCBA, an aide available to go on field trips. Honestly the list could go on and on. Its very sad.
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And it makes everything so much harder than it needs to be. x
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I can’t believe a teacher would speak to you like that when you just want your son to be included.I notice more accessible parks and I’m glad that things are changing (albeit slowly) to include everyone.
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I don’t think she ever wanted my son in her school. It sadly happens all too often.
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One block away for a wheel chair sway swing. We helped raise money to get it purchased and installed. Very happy that this occurred.
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What an inspiring and eye-opening read! I agree, there is a difference between being thankful and grateful and whilst some things are being done, yes strive for better! Your child deserves every opportunity that every child has! I hope he gets to use more of the park asap.
Thanks for sharing!
Leigh at Fashion Du Jour LDN x
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I agree there is nothing wrong with gratitude but if something needs to be righted then I don’t see it as complaining. I am sorry that you and your son have been treated so badly they should feel so ashamed of themselves x
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Wow.. this made me realize that I take too many things like granted.. sincere congratulations for keeping it up
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Wow, that’s frustrating. I’m in the states, and the parks that are close to me all have either sand or mulch padding in the play area, and I imagine wheelchairs would find it impossible to pass. There is one park about an hour away that has a reclined swing, but as some commenters mentioned, if a parent cannot lift a child out of the wheelchair, it is useless. #KCACOLS
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I am so shocked by the head teacher’s comment. Providing the basics to make somewhere accessible shouldn’t be something that a parent should have to feel grateful for. It should be something that is done far, far more widely than it currently is. Parenting is hard enough without having to constantly fight for your child to be included, and for the little everyday things to be provided that those of us who are able-bodied take for granted all the time. I don’t think our local park has any accessible equipment – the nearest one I know of with just one item is four miles away and I don’t know of any with more than one. Interesting point too about the difference between being grateful and being thankful for something – there is a difference but I’d never really thought about it before now.
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Thank you. I should have trusted my gut instincts after my first visit to the school. The “disabled toilet” was clearly not going to be big enough and appeared to have a cupboard next to it. I asked if it would be possible to knock the toilet and cupboard together to create a wheelchair accessible toilet and she said “but that’s the cleaner’s cupboard and we need the cleaner’s cupboard”.
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Hit the nail on the head again Rachel!
Although I will say, as my kids have got older, I am less inclined to be grateful & more inclined to complain – following my son’s campaigning lead.
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This is such a thought provoking post. Taking my little boy to the park is something which he loves and something which we take for granted. It’s such a shame that all children don’t get the same equal opportunities to have fun. You should never have to be grateful for something which the majority of people expect and take for granted! Thanks so much for linking up at #KCACOLS. Hope you come back again next time.
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