11 Dec When Festive Spirit becomes Festive Fright.

I have been a special needs sibling now for thirty years. My brother has complex learning disabilities, self-injurious behaviour and a rigidity that could be mistaken for rigour mortise! With Christmas just around the corner I wanted to share one of my stories of the festive season.

Christmas is a time when we are supposed to celebrate, rejoice and create happy family memories. For many this is the case and at times I am envious of the feeling of joy that people portray and experience; in what appears to be such an easy and natural fashion.

Christmas was often a hit or miss experience for me and the family growing up. My mum seemed to have an almost superhuman will to share and spread the joyful feeling and many years she managed to achieve this. Some years my dad was forced to work as he was the main income in our household with mum taking care of my brother. Other times, my brother was sick or having a hard time managing his emotions and interacting with the world.

As I became a teenager, I opted to spend my Christmas in the pub and with friends, drinking or partying and generally escaping the house as soon as I could. I felt stressed out by the whole thing as some years absolutely nothing would help my brother to regulate. Christmas was a time when his entire world was turned upside down by the trappings, trimmings and increase of people in the house. These times were hard to manage for us all, but they weren’t always this way and so for that I am thankful. By the time by brother reached his teens, we as a family had learnt many ways to manage the festive season so that it went more smoothly for us all.

We stopped wrapping presents and made sure that anything noisy or musical for him was out of the box and ready to go before the morning. Anything requiring batteries was set up on Christmas Eve by dad and myself. We started giving him what he wanted to eat for lunch, so often finger foods like potato smilers and chicken nuggets. We pre-blended his Christmas dinner and gave it to him when he wanted it rather than with the rest of the family.  Some years we even didn’t bother trying to share new toys and gifts as it was clearly obvious that he couldn’t tolerate it. We saved Christmas for a day when he was calmer and in a better place to receive what people had given him.

When he moved into supported living, he would be collected on Christmas morning rather than spending the night away from his now familiar surroundings and getting stressed. We asked people not to visit or to visit when the extended family weren’t already at the house. We asked people to visit him at his own house where there was more space and staff members on-hand to manage the situation if it became too much or overwhelming.  Things became very manageable and we probably got comfortable thinking that we had sussed it out for him.

Fast forward to just a few years ago. The final Christmas we would all spend in the childhood home. Things had been challenging for a while in the run up to Christmas. Lots of self-injury, lots of aggression. Time spent alone but desperately needing someone to hold his hands. Disengagement from his usual activities, attacks of health-related issues flared up again and generally everything was just as tricky as it had been for periods when my brother was younger.

Mum and Dad picked him up and brought him home . He wasn’t happy. He couldn’t settle, didn’t have access to the full floor space downstairs due to all the cooking and cleaning and preparation going on. He ended up slapping, biting and hitting himself and was generally out of sorts.

Presents, guests, cake and biscuits, singing songs, holding his hands. Oh my. Nothing agreed with him at all. He was exhausted, so was mum. She’s now trying to sort out lunch with dad and myself helping whilst keeping my brother entertained, preventing him from grabbing at granny or throwing his toys and answering the door every ten minutes to greet the well-wishers. It was exhausting.

Time to feed him his liquified lunch. Nope. Doesn’t want it, flicks it everywhere. Needs to go to the toilet, can’t pass it. Gets upset. Reflux starts, tummy starts, slapping and biting himself is the result. Frayed nerves, crying adults. Shouting, stress, anxiety and everyone eating lunch in different settings just to get through it. This was with all with our usual preparations. Our usual Christmas adaptations.

Gone is the role of a sister and out comes the therapist hat. Keep it calm, keep him regulated and provide opportunity for self-regulation that he needs. Explain to granny, explain to dad. Support mum and her emotional regulation. Now comes the hard part. The part where we as a family must decide that it’s no longer fair on my brother for him to come home. Who’s need is it filling? It isn’t his. He is so stressed out and has had his whole world flipped upside down for a day. Feelings of rejection, inadequacy, not being good enough or not doing it right. Not being able to spread joy and cheer and happiness. Having to explain everything to everyone, the silent judgements that get made. You see it in the eyes. Far more challenging for the family to manage the aftereffects of the day rather than the day itself.

The point of this story? Christmas can be so hard for those with differences. Yes, you can have some good years. We have. Yes, you can have some tricky years too. Sometimes you think you’ve got there, sussed it out, problem-solved for every possible change in the plan. Sometimes you have.

You need to do what’s right for you and your family. It does get better. Sometimes you must make a tough decision not to do something and stuff what everyone else thinks in the bin with the wrapping paper. Ignore their thoughts and silent reproaches because they haven’t got a clue who you are; what your family needs and how traumatic a time this can be for your child. It is trauma. It’s a trauma for the whole family but each of them will learn something from these experiences. You will all survive it and come through the other side. I’ve learnt that sometimes I do have to be a therapist rather than a sister and that this is OK. I’ve learnt how to help others, learnt resilience, learnt to support others but manage my own needs too. Christmas is about family. No family is the same and nothing is “normal” or “abnormal.” Christmas just is. Family just is. Even if the family has to be apart on the actual day. Who cares when you open presents or what you eat when? Just do what you need to do and have faith that it will all work out in the end and that YOU GOT THIS.