This is an interview with Jess about her experiences as a mother of a child with disabilities
Max is a gorgeous happy two year old with Pierre Robin Syndrome (a type of cleft palate) as well as a brain abnormality.
About Max
Jess: Max is two and a half, he has a tracheostomy (a tube in his neck that he breathes through) which means he can’t talk. He also has a brain abnormality which effects his mobility. He has head control and can move his arms to play but he is unable to stand or sit on his own and is in a wheelchair most of the time. He loves toys with bells on them, loves people, is very sociable and likes his weekly activities – trampolining, horse riding and physio. He is a really happy child and doesn’t dislike anything. He will tell me when he’s had enough through facial expressions.
Activities in the Community
We’ve tried going to parks. There is a disability park but you have to get a special code for it. This is frustrating as you must pay £2.50 to get the code but by the time you actually get the code, they change it. They also put disability swings into normal parks but children need straps to hold them in safely which aren’t left on the swings. You have to go to the council to ask for the straps but there’s only a few available and with thousands of disabled children across the area they are always in high demand.
Parks
On top of this, half the time you can’t get him into the park as the gate is complicated to open and you need two people to get inside; one to open the gate and one to push the wheelchair in. The parks are also usually covered in grass which makes pushing the wheelchair difficult. I have to help Max around the equipment which is difficult when you have a kid like Max who needs equipment with him at all times to help him breath. It’s only because he is still small at the moment that I can even think of helping him use this equipment. Soon this won’t be possible at all and I worry what I will do when I take him out.
The Cinema Adventure
I also tried to take him to the cinema recently. I read on the website that I should ring them in advance of the visit if I was bringing a wheelchair, so they can make the appropriate arrangements to help. But as I arrived, I realised that there were ten steps leading up to the front entrance with no wheelchair ramp. I couldn’t ask for assistance because I would have had to leave my child outside by himself just to get the help that had been promised. The problems didn’t stop there though.
When we got inside they did have two wheelchair seats available but because Max’s buggy is not technically a wheelchair it broke their health and safety protocol to put it in the designated area so after all that he had to sit on my lap. This was OK for now but when he gets older this just is not going to be an option.
Play and Exercise
We also try to go to soft play. Max loves soft play and it’s also really good for him physically. Unfortunately, soft play is just not accessible. The only section I can really go in with Max is the baby area as its all on one level. The main section is really difficult to navigate, partly because it’s on many different levels, but also because there are so many different tunnels and slides which, with all Max’s equipment and just me to help him, is really difficult.
Changing and Toilet Facilties
Another big problem is the changing and toilet facilities. They are quite difficult to access and often don’t have the equipment that many children need. If they do have disabled facilities, a lot of them have radar keys and unless you have a blue badge you can’t get a radar key. Luckily, I did get a radar key because Max has a tracheostomy – a lot of children don’t get that until they are three, so a lot of children can’t use the disabled toilets at all. This means you have to use the floor and who wants to use the floor? It’s really upsetting when places claim to have the appropriate facilities and then either you can’t access them, or they don’t actually have the necessary equipment like a hoist to help you.
Trampoline Parks
We have also tried trampoline parks. However, a lot of them are not for under-fives which obviously does not suit Max even though he loves trampolines and it is one of the only ways he can exercise. We tried to go to one session which was advertised as being ‘inclusive for all disabilities’. However when we turned up, most of the other children had autism and it was actually just a quiet session. When I turned on one of Max’s machines, the noise upset the other children and we had to leave. That’s not inclusive!
Therapies
So, we access several therapies, recommended by his physio and other professionals. Rebound therapy (trampolining with a therapist) is really good for Max physically. However, even though it is therapy, I have to pay for it as there is no funding for rebound on the NHS where we are. Many people can’t afford to do this. A huge downside as well is that, again, it is advertised for all disabilities but there’s no hoist to lift him onto the trampoline. At the moment, I am having to lift him onto the trampoline and there is only so long I can do that before he gets too big.
We also do horse riding at a ‘Riding for the Disabled’ centre. We were really lucky that we found one that did under-fives. A lot of them only do this for five and over but I couldn’t do it if he was over five because, again they don’t have a hoist and so I wouldn’t be able to lift him onto the horse. Horse riding is really great for him though, not just for core and sitting but also for sensory therapy.
We also see a private physio who helps Max with his development. We weren’t getting enough on the NHS so have had to find therapy privately but, again, this isn’t possible for so many families.
The Future
As he gets bigger he is going to be able to access even less. Toileting will be a huge problem. He will need to be hoisted onto an adult size changing bed and there are only 4 places in all of Bristol that have these facilities so I won’t be able to change him which means we will be stuck at home. It’s upsetting because the children who are most affected are the ones who need to be finding ways to do activities as they have less chance to do this themselves. Exercise for children with disabilities is so incredibly important and helps them to develop and is good for their health. Max relies on exercise because otherwise he just sits in a chair and this is not good for anyone.
How can Gympanzees help?
We can get all the activities and exercise we need for Max in one place at Gympanzees. It will have hoists so he can get on all the equipment, people there to help you and will have changing rooms that Max can use even when he is fully grown. It will have outdoor facilities like a swing with straps that I can use!! At the moment his three activities are all on different days and spread far apart.
Gympanzees means Max can go to one centre for one day which means I get some days back with my child so as a Mum I can have more days of play and fun instead of me being his therapist and driver for three days. It would be amazing for us and it also means that he won’t get to that point of being so big he has to stop everything and all that hard work we’ve done for all those years will be undone. It will take away the pressure off having to do everything now. I can’t wait for it to open!
