The world is very strange at the moment, there is no denying it. Social distancing, masks and being in and out of lockdowns makes for a complicated existence, it certainly changed Christmas as we know it. That being said Christmas with Charlie has always been different, the current covid restrictions only served to add to that. Due to Charlie’s Hydrocephalus and resulting brain injury he becomes overwhelmed easily and Christmas is all about big, noisy and overwhelming. It can very quickly become to much for him and we have to be able to recognise that and try and help where we can. That being said we do also need to keep socialising him and exposing him to busy, bright and loud experiences to help him to learn how to cope. It’s a delicate balancing act and I think it’s safe to say we learn something new every Christmas. There is no rule book for what to expect, brain injury is as unique as a finger print and no two people will have the same pattern of damage. Our first “post hydrocephalus” Christmas was very strange, we were told to expect he may be overwhelmed but we didn’t realise what that would look like. It’s safe to say we probably did a lot of things wrong. We took him to various Christmas parties and Santa experiences and in the main that was OK, he was subdued but not noticeably unhappy. He was actually really calm and happy while high fiving Rudolph on the Santa express and sitting on Santa’s knee in a grotto. All was going relatively well and no real sign of problems until Christmas day. We had moved several of his toys to make a little space for his presents thinking this wouldn’t be a problem. He didn’t understand the presents, that was fine he was young. He didn’t want to rip the paper, even with help or encouragement, he was looking for his toys and was increasingly emotional that he couldn’t find them. He was only recently mobile but he tried to get away from the excitement of Christmas. We quickly tried to regain some normality for him but he was quiet and withdrawn for some time. The following year we had some experience, we tried to use what we learnt the year before. There were some difficult moments, one particular visit to an elf workshop reduced me to tears. Parents judging him as he sobbed was frustrating and hurtful. He has self regulation techniques and in this environment he was unable to use any of them, all we could do was support him and hold him and let him know he was safe. I often struggled to find the words to explain that he is non verbal and that was often hard for Santa as well as us, as Christmas wore on I grew in confidence when having these conversations. I still don’t know why but I often find I get a bit tearful when trying to explain Charlie’s story to people. Christmas day was again overwhelming but we took things more slowly, he had breaks between presents and although he did get overwhelmed he did have space to “reset” and calm himself. We took three days to slowly open gifts and he enjoyed time to “get to know” his new toys before moving to the next present.
This year was our third post hydrocephalus Christmas and along with the covid situation it has been very different. Once again we tried to book as many Christmas experiences for him, we booked a tots Christmas fantasy holiday, Santa visits, tea with Santa on Christmas Eve and one by we saw these cancelled. We were disappointed but for different reasons than just a lack of festive spirit, we were worried that if Charlie didn’t at least see Santa this year he would struggle to understand what was happening next year. A lot of these worries derived from the difficulties we have had between lockdowns reintroducing activities that he was previously comfortable with such as trips to aquariums and hair cuts. Familiarity is important to him and we are manically trying to reduce any lasting negative effects that lockdown may have on him. We were lucky to find two “socially distanced” Santa experiences. One was at a local garden centre that we had visited the year before. The stress of securing tickets was akin to buying to tickets for a Green Day concert some years ago, it was intense! Eventually I achieved my goal and we secured tickets, it took three hours and lots of frustration and expletives but I did it! Charlie struggled with the queue but he did sing wind a bobbin with an elf so it wasn’t all bad. He tried to escape Santa’s grotto at one point but he did then manage to sit on Daddy’s knee and look at Santa, still a little awkward to explain in a couple of minutes why Daddy is answering for him but ultimately it was a positive visit. We also booked a Santa experience at a farm we visit, he was confused at times and we had a few meltdowns but he waved at Santa , saw his favourite meerkats and Mooed at a cow. Let’s be honest how does life get better! We have tried really hard to give him positive experiences despite the pandemic and I think sometimes you can only do your best and accept somethings you cannot control.
This year we experienced a new complication. Charlie is developing his own interests, likes and dislikes. He is making his own decisions and it’s lovely to see his personality continue to develop. As he is non verbal he can’t tell us what he wants for Christmas we have to observe him and try to decide what would make him happy. Some things like Frozen, Olaf and Lightning McQueen are relatively easy to see and so you know presents based around these things will be well received. A few weeks before Christmas, when I was feeling quite smug that my Christmas prep was going really well, I noticed he was engrossed in something new on his tablet. I vaguely registered it singing songs and that he would giggle and become excited watching whatever it was. It transpired the bringer of joy was something called Cocomelon. Pleased with my detective skills I thought, ah we can buy him some Cocomelon toys for Christmas. Little did I know the toys of Cocomelon are rarer than diamonds. Unscrupulous people were bulk buying and overcharging for the toys it was quite the Christmas crisis. I now know what my mum went through to secure a cabbage patch kids one year in the early 80’s I’ll be honest I felt some serious stress at trying to secure these items but I managed it and I tell you now it was worth it! Never did I think I would feel such satisfaction at securing a singing bus and doll, how times change. The thing with a non verbal child is just because they can’t speak and express their opinion it doesn’t they don’t have one . Charlie has opinions and thoughts and can feel desire and disappointment just like us, my greatest fear is not reading his signals correctly and making him unhappy. We are continually trying to aid his communication through speech therapy, signing and physical cues but at times it is really hard and there is nothing more heart-breaking than seeing his frustration and tears if we don’t understand him.
I will be completely honest that I love Christmas and as a child felt such excitement at Christmas. I suppose when I was looking forward to being a Mummy one of the experiences I was looking forward to was a family Christmas and watching my little one excitedly wait for Santa and wake early to open presents. This Christmas Charlie fell asleep before his Christmas Eve box was opened and turned his back on his presents on Christmas morning to read a book. There is a little twinge of sadness for that expectation I had but then, as with a lot of things, I have to reframe it and look to the positives. He didn’t turn his back on the gifts because he didn’t want them or because he is ungrateful, he did it because it’s all just too different for him to take in. He doesn’t understand wrapping paper or the desire to open it but once you help him or open the gift for him it’s lovely to see his reaction. He doesn’t rush anything, if he likes a gift he may play with it all day and that may be the only gift he opens but that’s not bad, at least it shows you picked the right gift! This year we opened our last gifts on New Years Day, some days we only opened one gift but he was calm and happy. He took time to settle himself and it was nice for him to have the opportunity to see two of his grandparents on Christmas Day, although it did take him some time to reacquaint himself with his surroundings. It’s different but it’s not bad, I’ve learnt time and again on this journey that I have to change my expectations but once I do there is often a lot of joy to be found.
Next year we’ll probably change things a bit again, we’ve done some more learning this year and we’ll take that knowledge and try and make next Christmas even better if we can. Come back to me in ten years and I’ll let you know if we ever actually get it perfect but to be fair I’m unsure there is ever true perfection in life. Life is chaotic and ever changing and the best you can hope for is to meet that head on and emerge smiling. Learn lessons but don’t forget to enjoy the moment and embrace the memories you make, good or bad they are all chapters in our story.
“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” – Jimmy Dean
About a Boy and Hydrocephalus 