Additional Needs

So Much to Say

Posted by Ceri-Ann Brown on 14th May 2020 Additional Needs, Advice & Support, Disabilities

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Never have I ever had so much and yet so little to say all at once! I am sure we can all collectively agree that 2020 has been one of the strangest years ever.

In so many ways we live our lives by quite strict rules. We are often isolated from the world. We shielded from illnesses long before it was a “thing” to do. We feared hospital trips in case of picking up nasty extras. We kept our distance, we had adapted our lives to suit our situation. So even before all of this, some of it seemed to come quite naturally to us. However equally there have been many challenges and difficult decisions to face along the way.

I had kind of hoped that being in lockdown would force us into a more sedate, calmer way of living. I thought the break from appointments, procedures etc would be a welcome change in our lives.

How wrong I was!

The first few weeks were nice. Lots of time as a family, finding new ways in our home to have fun and make memories. We even got to go on regional TV (distanced) and talk about the challenges families like ours face during isolation.

Fast forward a few weeks and I sort of feel like a hypocrite. Last week, after much convincing, and reassurance from her team… we sent Amy back to school. You see, all children with an EHCP (educational health care plan) are still legally entitled to access education. The caveat to that is that Amy is medically complex and had received the letter from the government advising to isolate for 12 weeks.

I cannot even begin to put into words the level of chaos our lives descended into after only a month in lockdown. Amy changed. She hated all of her toys. All of her videos. All of her music. Every “change of scenery” (i.e. going into a different room or space in the garden) was met with screaming frustration, pulling of hair, and genuine tears. It was heartbreaking. She had almost entirely detached herself from reality. There was no eye contact, no socialising. Only crying.

Amy is an incredibly bright little girl. However, she still has delays and a cognitive impairment. I have struggled to find a way to help her understand that she can’t go to the shops right now, or she can’t see her grandma for a cuddle, or that she can’t go to respite to stay and so on. To her it must look like we are suddenly punishing her for absolutely no reason.

The crying quite honestly would start at 7am, and go right through to 7pm, followed by a night of disturbed sleep and distress. It was a lot like how she used to be as a baby before we had resolved a lot of her feeding issues. Our bodies would ache to the core. Her dad and I work really well as a team, either taking it in turns, or working together. When one of us becomes overly stressed, the other will take over. It’s a fantastic system but it doesn’t matter how hard you work, when suddenly your entire support network (school, family, respite) vanishes, it is going to eventually take its toll on you.

Initially, I felt a lot of guilt.

We had managed to keep her entirely indoors for over a month, we had done so well. Then came the first day we wandered down the road with her… just to see what would happen. She was silent. Aghast and amazed to once again be encountering the outside world. I remember the first few times I left the house, even for five minutes. I would come in, wash my hands, hand gel, anti bac the door handles, strip my clothes and throw them straight into the machine, and then go for a shower. I can’t work out still if that was over the top or not, should I still feel this way? Or should I accept that our current situation means that we HAVE TO leave the house. A child with a severe neurological disability is going to need catering for in a situation like this. Like everything else thus far we would need to look at the pros and cons.

Every time we are required to make difficult situations with regards to Amy, I am thrown back to a memory from 2014. Amy was in the neonatal ward after a month in NICU. Her consultant asked me what my main concerns were. What I said that day has stuck with me, and I recall it every single day. I said (I mean, obviously I’m paraphrasing) “all I care about is that she is happy. That she can let us know when she’s in pain. I don’t care what her outcome is, I just want her to be happy”. When she is not happy - I am not happy. None of us are. So, living with her gradually deteriorating mentally more and more felt like actual torture. This is still my ethos today, six years on. I’m not being biased when I say this, but her smile actually is amazing. Everyone says it. When she smiles, I know at that precise moment, that for now, everything in her world is right. I think that might even be my reason for existing; to see that smile.

It’s made me think a lot, this whole thing. Having already been a socially anxious germophobe, it has been sort of nice in a way to finally see others stoop to my level! However, I deeply miss my parents, and mum in law, and just my whole family and friends. I miss being able to go for a coffee, or to nip to the shops. More than anything, I miss getting out properly into nature, going on days out, going on adventures with the ones that matter. Don’t get me wrong - I love that suddenly no one feels the need to touch everyone, and that there is less traffic, and that suddenly it’s okay to have no weekend plans, but I long desperately for that feeling of normality.

In my head, I have “clapped for the NHS” more than once a week for the last 6 years. I’ve clapped for them in my mind every time I fall asleep knowing that across the hall, my child’s heart is still beating, thanks to them. They saved my life and also my child's’. It’s great to see most of us are on one page, uniting to celebrate and appreciate such an important part of our society.

We actually had to go to hospital recently. We had this confusing medical situation where Amy was refluxing her feed from her bowel back into her stomach. (She is tube fed by a pump into her jejunum - so really nothing should be in her stomach). It was really quite alarming and also proof that no matter how well you know your medically complex child, there will always be a new curveball ready and waiting to bop you over your complacent head. I was so nervous going into the hospital. The corridors were eerily quiet, I managed to get a parking space (what!?!), and all of the familiar faces were there, except with masks and gloves. Honestly, it felt almost post-apocalyptic. We weren’t in long. They wanted to keep us in, but once I’d learned that the plan didn’t involve anything “hospitalising” (i.e. IVs, oxygen etc) I was outta there.

You could almost make out the puff of smoke from us zooming on out of there like in a road runner cartoon. We’ve managed to actually avoid what I think would have been 3 trips to hospital thanks to respiratory issues, gastro issues, and seizures. It is a reminder that whilst sometimes we feel entirely out of our depth and baffled by this whole thing, that actually we are also competent parents that understand a lot about our child’s complex needs, and that we have the resources, contacts and equipment to try and prevent more admissions. It has been a long road but learning to stay home has been a lifelong lesson for Amy.

How is everyone else doing?

How many of you have perfected sour dough bread recipes? How many have taken up a new hobby like sewing or crochet? For me, I am lacking in these things but am proud to be reading much more and also doing more work on improving my mental health. It is shame however I am not doing more for my physical health. I had hoped the lack of open fast food restaurants would have a positive impact, but I find I am very much fuelling myself on entirely white bread these days! I have even found an awesome local bakery that delivers, that I plan to use long after this is all over!

I hope everyone is doing okay. I hope that you are managing to stay connected with those who matter, and still accessing whatever therapies and specialists you need to during this time. There are days where I feel really optimistic and hopeful, and days where I feel really quite low and desperate for all of this to be over. I remain ever grateful to all of those close to me, and a local charity called Reuben's Retreat who have been doing so many awesome things for families like ours. I am sad for some of the stuff we were meant to do for Amy being delayed (keto diet, going on an adapted holiday etc) but hopeful that when we do get to do those things, that we appreciate them so much more than we would have before.

I have been so moved by some of the amazing things our communities have been doing to keep everyone going. As much as I have found the awful side to people this pandemic has brought out; I still feel that there are so many good people out there, ensuring that vulnerable people have what they need to survive and thrive.

I have definitely learned the importance of not judging. I recently read a story whereby a lady had had to use her dad's van because her car had broken down. It had an "up north" address on it as it was a company van. She lived down south in a popular tourist destination area. People had seen this van in use and assumed that the people had come down south to spend quarantine on "holiday" and had been sending the lady death threats, reporting her on social media etc. The lady was devastated and terrified for her life. My heart sank when I read the story - she was already in an unfortunate situation, but now was a victim of online bullying and serious threats. It just goes to show that everything isn't always quite what it seems. The person in the shop buying more than two of something may actually be shopping for their elderly neighbours. The family you see driving "in the middle of nowhere" might be desperately trying to calm their child who has autism that needs long car journeys to self-regulate. Yes, there will always be selfish fools who flout the rules and do what they please, but more than ever this is a time for compassion. There have been many things I have done in the interest of appeasing our distressed child, that perhaps an outsider would judge us harshly for... but if they knew the truth, they would do the exact same thing.( I am however guilty of judging those who incorrectly use disposable gloves when out and about!!! The hypocrisy continues haha)