It’s the day after Christmas. My house is chaos, the kids have been hyper and and we have all consumed far too much. Our stress levels at times have been off the scale and the parties feel like a distant memory already. Yet for parents like me so much about Christmas is just a reflection of real life all year round. Let me explain:
1. At Christmas time you spend a lot of time inviting people to, and attending parties.
As a special needs parent I spend much of the year inviting professionals to meetings and attending meetings and training courses. Other than parties specifically for special needs children we seldom get invited to other parties. Who wants a screaming, non verbal child with limited social skills at thier party, especially when he would think nothing of throwing all the party food all over the floor? And to get invites you need friends. Special needs parenting is one of the most isolating things ever. How many parties did you attend this Decemeber? I probably attended that many meetings. How many people did you invite to your parties? I probably had to invite that many professionals to meetings as without my invite they would never have known about the meeting as letters rarely get sent to the right people on time. Folk give excuses to not come to your party? Sadly professionals did the same to my child’s meetings. This isn’t just Christmas to me, this is life.
2. At Christmas you spend a lot of time searching and shopping for that ‘perfect’ gift your loved one requested.
As a parent of children with autism spectrum disorder I spend hours every week scouring supermarkets for that certain food they will eat. Like your loved one who only wants the certain branded toy and no imitation, my children will currently only eat certain custard, certain ice-lollies and certain breakfast cereal. They are not being demanding or spoilt. They have rigid thinking and can not cope with change. If custard tastes good in that one pot then why change? You almost cried with relief when you managed to buy the last ‘in’ toy knowing your loved one would be delighted on Christmas day? I cry with relief when the shop still sells cornflakes with thier old design box as I know that my child would refuse to eat them had I been forced to purchase the new design box. This is just Christmas for you, but this is real life to me.
3. You will try anything to get the kids to sleep on Christmas Eve night so you can get organised.
I will try anything ANY night to get the kids to sleep. We’re even giving one medication but still rejoice at 5 hours in a row. THAT is our Christmas miracle! Lie in on Christmas morning? A lie in is 6am for my family and so many other families with special needs children. Having hyper children one night of the year is hard, imagine having that every night of the year. Welcome to real life with special needs children.
4. Everyone gets one of ‘those’ presents you never asked for.
So you got bath salts you are allergic to? You got two wallets, and socks you will put in a drawer and never wear? For parents like myself unwanted ‘gifts’ this year have included my child having a seizure, or smearing, and lots of screaming. The overwhelment at Christmas can be far too much for many children with autism. Unwanted gifts can be sold on ebay or taken to charity shops and forgotten about. I can not forget about the struggles my children face. And they face them day in and day out, not just on Christmas day.
5. Your house is noisy, chaotic and full of toys everywhere on Christmas Day.
That just described my house on a daily basis. My son has no idea how to play with toys so empties boxes all over the floor then walks away. His attention span is less than a minute so he fleats from one thing to another so quickly and leaves a trail of devastation wherever he goes. Coping with a messy, noisy, chaotic and loud house one day of the year is to be commended, coping with that every day of the year makes you amazing. Special needs parents have more patience than saints. And amongst all that noise and chaos and screaming they still know if thier child is injured, unwell or even escaping out of some unlocked door somewhere! If it wasn’t for school and nursery my house would look like yours on Christmas day almost every day of the year!
6. At Christmas you buy the same things to eat every year: turkey, stuffing, parsnips and cranberry sauce.
My children have the same diet all year round. My weekly shop is just de-ja-vue. Breakfast cereal, chocolate, ice lollies, cheese, mashed potato, fish fingers, nuggets and chips. You think Christmas dinner is predictable? My weekly menu is just as predictable. I did try cooking Christmas dinner this year. I was an utter disaster so my son ate breakfast cereal as per usual.
Tradition is ok at certain times of the year but it is getting very boring when all they will eat is the same thing day in and day out. Even the best of us would get rather fed up with turkey dinner by mid way through January!
7. At Christmas we spend time with people we hardly see but who often have a lot to say about our children.
I see more of my children’s speech therapist and paediatrician than I do alot of my family. And like professionals who only see my children 2 or 3 times a year, so often family think they know how to help my children too. I am blessed with supportive family for most of the time but when people don’t see your children very often they can easily make assumptions. ‘is he not speaking yet’, ‘why haven’t you toilet trained him yet’ and ‘you should really teach him to use cutlery for next year’ can be heard in so many homes over the festive period. Actually it would be nice if the only time I heard comments like this was once a year. Sadly these are things I hear all year round. A present of understanding and love can go a long way at Christmas and all year round.
8. You spend a lot of time writing and a lot of money on postage at Christmas.
The price of stamps is pretty high now and takes a chunk out of your Christmas budget to write and post Christmas cards. But as a one off that can be bearable. It takes quite some time to write labels and thank you cards too. But once again it generally only occurs on this scale once a year. I wish I only had to write lots at Christmas. But with two disabled children I have forms and letters and reports to write weekly. And disability forms of over 40 pages to do periodically too. The postage for forms like that with associated reports always involved taking money out the bank rather than using pocket change. Writing ‘merry Christmas’ on thirty plus cards can give you writers cramp but writing out your sons diagnosis 30 times is heartbreaking as well and wrist-aching. At least reading the Christmas cards is cheerful stuff. And very little of what I write this year will ever get hung up on a wall.
9. Parents take on super human roles at Christmas; Santa, chef, wrapping expert, entertainer and house cleaning fairy.
Us parents of special needs children have to take on these roles too. We also need to be nurse, speech therapist, play therapist, teacher, supporter and advocate for our children all year round. It is such a relief when Christmas day is over and you can simple be ‘mummy’ again. I am never really just ‘mummy’ as I am the only way my son chooses to communicate. He won’t drag anyone else to what he wants and he won’t allow anyone else to give him his beloved baby bottle. Mum is comforter, communicator, advocate, voice and therapist twenty four-seven. It is demanding all year round not just in Decemeber.
10. It’s never ending trying to keep the house and kids presentable for visitors at Christmas.
You just never know over the Christmas holidays when some relative will pop in. So despite the mass of new toys and general chaos on the floor you try your best to keep things ordered enough should that unexpected guest arrive. And you dress the kids in lovely new outfits on that special Christmas day as it’s a day to remember and celebrate. Unexpected guests, and expected ones, can come all year round to my house. Social worker, occupational health and our health visitor are all regular house guests throughout the year. My children are never dressed smart though as all my son will currently wear is his red school jumper and school joggers. Yip, he even wore them on Christmas day! It’s stressful trying to keep your house clean and tidy and kids settled should someone arrive in the holidays but when that can happen all year round it gets very challenging. Especially with children who think nothing of being naked or tipping every toy box out they can find. This isn’t just Christmas to me, this is life.
11. You watch the same things on TV you do every year.
Christmas is the time for repeats. Which isn’t so bad when you last saw it 12 months ago and you are watching the entire film or programme all over again. But with my children with autism this isn’t just once a year, not even weekly, but daily. The same video clip on you tube, the same dvd, and often the same 1 or 2 minute clip. repeated, and repeated until you hear it in your sleep. Reruns at Christmas are just about bearable, even traditional, but that degree of repeat is head thumping. And still listening to the same segment of Christmas song in July gets very very waring. Suddenly the Christmas TV repeats don’t seem that bad after all!
12. It’s all worth it to see the children smile and realise they have progressed so much in a year.
I knew I had achieved the holy grail this year when both my children showed delight on Christmas day and both played with thier toys. They even broke thier usual morning routine without hesitation which was such a miracle.My son could not ask for anything as he is non verbal but he had shown some interest in some google images so we purchased second hard some special things for him. This was his face when he first saw them:
and twin sisters face when she saw she had the dolls house she had asked for:
Thier progress is slower than other children thier age. But like special needs mums all over the world I celebrate the little things as if they were the most wonderful achievement ever. And this year marks the first time both children played on Christmas morning.
When the tinsel and tree are all tidied away, the last of the turkey has been eaten and the children are back in school and nursery I will look back on this picture and treasure it. Because it marks progress and achievement and my Christmas miracle. While my son still has no concept of Santa, or the nativity story or even unwrapping presents he did understand that he had new toys and embraced exploring them in the way he loves by scanning them across his eyes and licking them. And he smiled at me.
That is a miracle that isn’t just for Christmas but for all year round.
Being a special needs parent might have it’s challenges but the kids just made every minute of it worthwhile. The best Christmas present any parent could ask for. And now he realises toys can be played with It will be like Christmas all year round now.