Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Things I thought I would never do
There are many things I thought I would never do.
I remember saying I'd never drive a big car. Now I drive a van.
I always thought I was squeamish. But I didn't think twice about repassing a NG tube on my child, or a gastrostomy button. I didn't think I could deal with bowel movements, vomit, bogeys.. all of it.
I never thought I would sing loudly and publicly. The girl has transformed me into a walking pantomime (not a good one, I hasten to add).
After her first surgery I said never again. But it was necessary, and it happened again.
I have conquered it all. Valiantly, and covered in nappy cream/powder formula/sticky medications.
But recently I had to do something I always said I would never do. And with this one I am not proud.
Everything previously I've been forced to do I've done through necessity but been pleased with myself afterwards for meeting a new special needs milestone, or learning a new skill.
I said "I will NEVER change my child's nappy in the back of the van". I also said I'd never change her on the toilet floor (not happened yet still. Thankfully).
It happened yesterday and ever since it happened I've thought about it several times an hour and felt quite sad and guilty about it.
We did what we had to do. It was the best option available to us at that moment.
But it doesn't change how unfair it feels.
Last week was tough. Amy was off school poorly all week.
On Sunday she was feeling much better so I planned a scenic family walk in the Cheshire countryside.
We changed her nappy just before leaving. Sadly we cannot time her bowel movements as she is fed 24 hours a day, so we just hope for the best.
I was hoping it would all just time itself fine and we would deal with it all when we get home.
First we got lost en route to our location. Then we got stuck in the car park for 30 minutes as we weren't the only ones treating ourselves to a scenic family walk.
I could see the disabled parking bay around the other side of the carpark. We had no way to get to it other than to creep very very slowly. We were at the mercy of the traffic jam.
Inside I could feel a desperation to just get out of the car and get the walk started. I felt like I'd been driving forever.
We finally got into the bay and I unloaded Amy from the back of the van. My heart sank when I realised what the nappy situation was.
I got Phil to confirm and we accepted our fate. We walked to a nearby family pub only to find that not only did it have steps in the entrance, even if we got in, the walkways were so narrow and the room so packed with tables that we didn't stand a chance to get it.
Defeated, we walked to a quaint tea room. I walked in alone to scout out the changing situation.
Internally I was cursing myself for having not checked out all of these things prior to leaving the house.
What I found wasn't even what you'd call a changing table. It was some sort of old dresser with a changing mat on it. No legal weight limit specifications, furniture possibly not even attached to the wall, room way too small, and also in plain sight of everyone walking past.
I let out a sigh as I passed a family with a child the same age as Amy and felt that pang of envy that toilet issues like ours don't even exist in their world.
I approached Phil, Amy and our impatient dog and said "We're going to have to change her in the van". The disappointment and dread of Phil's face mirrored mine.
We tried to make it as private as possible. Frustratingly she needed an entire outfit change. It wasn't pretty.
I felt self conscious. I wasn't protecting her dignity well at all.
All of the things I stand for and advocate for and yet I could see perfect strangers peering round to get a good look at what was going on.
I felt myself get red and hot with stress. We fought with her flailing limbs and worked hard to stop her banging her head on the floor of the van.
Her movements are very sporadic and uncoordinated, she can't protect herself from kicking a hard metal hook or bashing her head on the hard surface of the van floor.
We huffed and puffed and worked well as a team to get her back into a clean outfit. I was pleased I remembered so many wipes, antibac spray and alcohol hand gel.
We got her back in her chair out of breath and certainly not ready for a family walk.
I was gasping for a drink. The queue for the coffee place was huge. Feeling cynical I felt anger at all of those people for I felt of everyone at the whole place, we deserved a drink way more.
Heck, I think we deserved medals or trophies or something, Amy included.
The path was mumch bumpier and hillier than I previously recalled.
We came here 3 years ago, when her chair was smaller and had great suspension. I cringed as she bounced and bumped her way a long the path.
She smiled about it which is good, it can go either way. I know we say not to compare to others. But we were the only people there not smugly carrying a take out drink, wearing wooly hats and scarves and running around playing hide and seek or tag.
I had by this point taken my coat off as was sweating from the intensity of it all. My hair once again betrayed me and began to frizz unflatteringly in the heat. I wished we hadn't left the house. I wished I hadn't got out of bed.
It's amazing how quickly my mood and thoughts can change. I can go from positive and upbeat to downtrodden and depressed so quickly depending on what accessibility and facilities a place provides.
We reached the top of the hill and took in some amazing views. Everyone around us seemed happy, I let their happiness reflect and soak into me and tried my best to shrug off the van ordeal.
I didn't want to go back to the van, which was soon to be full of bags of soiled clothing and smell of strong antibacterial spray.
The walk was exhilarating. The trees autumnally glorious. The dog had a blast, Amy smiled the whole time.
I don't think I'll remember this as the place where we had a lovely walk. I will remember it as that first awful time we admitted defeat and changed Amy in the van. I don't think it will be the last time. I plan now to buy a wipe clean fold up mat, and something to stand around the back of the van to give some privacy.
I'm wondering, have any of you faced this situation? Do you still do it now?
Part of me feels bad for complaining, I know plenty of people whose children with disabilities are now adults and most likely never had anything close to what we have now in terms of accessibility. I don't know how they got through it all, they have my admiration, empathy and respect.
However, I also feel that societys expectations have changed and the realisation is that the disabled community is growing... with advances in medicine we are saving more babies that will go on to have complex health needs, equally we are living longer which in some cases will mean more people with mobility challenges.
Surely from now on the world will be forced for than ever to see the world through our eyes and make the necessary adaptations to accommodate and include all?
I had checked to see where our nearest changing places was but there was nothing nearby.
We were too far from home to go there and return back. It was a horrible situation to be in.
One I fear being in again. It was dangerous, undignified, unhygienic, unfair and so many other things.
When I got home I wrote to the National Trust to explain the ordeal we had faced. I was pleased to find that some of their attractions do feature Changing Places, and that they do intend to install more. They also said they would pass my post on to the relevant teams.
When I uploaded the picture in this blog to Facebook for friends and family to see I had entitled it "our day so far". What I hadn't considered was that some may not realise we were positioned this way to change Amy's outfit... they panicked and thought a medical emergency had occurred.
We were hit with a barrage of comments from concerned friends "is she ok?" "omg what happened?" etc.
To me this highlights how unnatural this image is, how it shouldn't be this way.
I assuaged their anxieties and assured them it was just a nappy change, and the general consensus was how unfair it was. I also received many helpful tips from other parents who have had to face this situation.
I worry about when she gets bigger and we can no longer lift her. The van changes are not something that can continue to happen. Our backs can't handle it and she's getting so strong. I don't know what we will do.
I don't want to isolate ourselves and stay home all the time.
I said I'd never change my daughter in the van.
I wish I never had to. I wish I never had to again.
Please world, keep changing for the good. We just want to be out and about like everyone else, even if I don't have a hand free to be smug with a take out coffee.
