The festive season is well and truly in full swing. Our tree is up, unhealthy tasty foods are slowly filling our fridge, and a pile of presents blocks doorways awaiting wrapping and tagging.
It can be a really tough season for some special needs families. Now this post won’t apply to every family, we are all different; however, I am writing what I feel works for us and hope that it resonates with others too.
There are many things you can do to help families like ours at this time of year.
Very rarely will it ever cost any money, just a little extra thought and some of your precious time.
This isn't meant to be a patronising post, we already know you're doing your best and we see that.
But sometimes it can help to have a little guidance from those who are going through things first hand, and sometimes we are scared to ask as we don't want to burden you.
Remember that we want to be there, but can’t always!
I can’t stress enough how much effort goes into simply leaving the house for a few bits at the shop.
So when you approach a season with overwhelming social obligations - it can get a bit overwhelming. Often our trips out involve a lot of planning - space, accessibility, changing facilities, will it be too crowded, will there be space to escape if need be, what will we need to pack so we don’t have to cut the trip short etc.
Ask how you can help
This is a simple one and probably a bit obvious, but honestly it’s so important. Sometimes we like to pretend we can conquer it all by ourselves so we might need a bit of a nudge to encourage us to accept help.
Sometimes even just popping by with a few bits from the shops when you’ve been for your own stuff.
My daughter gets poorly constantly throughout winter and we spend a lot of it housebound.
It can be really isolating and actually just knowing you’re thinking of us means the world.
If we are in hospital we would snap your hand off to get a visit - we get bored, and I struggle to get decent meals!!
A meal delivery and a listening ear is the greatest gift we can ask for. We know it’s likely you won’t be able to care for our child a few hours whilst we go Christmas shopping etc, but there are lots of little ways you can help, even just offering to play one on one with our child whilst we wrap presents.
Check with us first about venues!
I do worry sometimes that we come over a bit bossy, I like to be able to go with the flow and generally am a people pleaser - but sometimes when it comes to my child I have to make an exception.
I worry constantly about coming over neurotic, self righteous or self-important, but it really is a big deal. For our situation - we prefer places where there is a lot of room, not too much noise, has Wifi, easy access to get outside/away from the hustle and bustle.
Every new place we go you can guarantee I have vetted it to the extreme - does it have steps to get in? Is there disabled parking? Do they mind us rearranging tables to fit a chair in? Are they okay with the fact that my daughter will be there but not eating?
If all of the boxes aren’t ticked it can ramp up our anxiety or cause issues on the day - none of us want that, we want to see you and have the best time.
Accept that we do things differently
I am lucky that our friends and family are very innovative and thoughtful people.
They know that Amy’s not going to be enjoying opening an advent calendar (she just isn’t interested!), so they will find ways to make sure she still gets the same thrills she’s entitled to.
For example on Halloween… trick or treating is a no go for us. She won’t go out after a certain time or she gets seizurey and upset, she also doesn’t eat, we also find a lot of homes around here have limited accessibility - so instead my Auntie bought her a colour changing ghost toy.
It was such a thoughtful gesture. My mum bought her a nice costume to wear, and we also made pumpkin play a more sensory themed activity.
Sometimes it does cause me a bit of grief we can’t enjoy the same traditions as other families, or that I can’t relive my childhood with Amy… sometimes I do feel quite downhearted about it all and wish things could be different.
So when you see us doing things the way we do them - know that it is for a good reason and we are trying our best!
Unsure about presents?
Ask! Yes our daughter can be notoriously difficult to buy for. She doesn’t have that “mummy can I have this” feature that her able bodied peers often have.
In fact she still thoroughly enjoys most of her toys from 5 years ago! So every year she seems to get less and less from us, because why force something?
Mainly we have been asking for clothes. I know as a child this is desperately unexciting, but Amy doesn’t seem bothered.
I remember last year feeling hurt and deflated because she had zero interest in any of the toys we had bought for her.
I had been so excited and all she wanted was to watch her videos on You Tube. She also has a lot of toys, she seems to acquire more and more.
What I think would be nice are hand-written vouchers “one trip to the shops to have a look around”, “one trip to the garden centre to see and smell the nice plants.”
Or, donate to one of the many charities that help us! There are loads of worthy causes.
It’s great knowing that money is going somewhere that will benefit many. If there is one thing I have learned over the years as Amy’s mum is that memories and experiences are so much more valuable than any other gift.
Know that we are grateful and we love you
Sometimes it must feel like you have to accommodate for us constantly. I hate the thought of people thinking our relationship is one sided.
We appreciate every single thing you do for us… we may not reply to messages as promptly as we used to, we may not always reciprocate as much as we would like.
Please don’t abandon ship! We are just a bit navigating unknown waters and getting through the days as best we can.
Is there anything you would add to this?