I think the song goes “it’s the most wonderful time of the year” and it is, mostly.
I have always loved Christmas, loved Santa, loved the super cheesy but festive Christmas songs you hear in all the shops in November and December. It really can be the most wonderful time of the year, but it can catch you off guard too in the most unexpected way. Just when you are busy rushing around like everyone else in the toy shops, in the Department stores, standing in the line of children queuing up to see the most famous man in the world who happens to wear a red suit, it will just hit you.
I think any parent who has a child with Special Needs will tell you that their Christmas can be a very different experience to the one we have all experienced growing up. I know that before I had Conor I expected, planned even to have Christmas’s just like the ones I had experienced growing up. The ones where you go to Christmas Eve mass with your children, stay up late having fun, wait up even later to make sure they are all asleep and then you go to bed waiting for the sounds of their squeals of happiness the next morning.
I have spent every Christmas Eve since Conor was born awake all night. Not because I was hoping to catch Santa in the act laying out all our presents but because for Conor and children just like him, Christmas can be one of the most overwhelming times of the year. Every Christmas eve without fail, Conor gets so over worked with all the excitement, all the changes to routine, all the presents , all the lights, sounds, noise and visitors or us visiting. It gets too much for him, so much so that every Christmas eve and the nights leading up to it he will stay awake with anxiety and worry.
I feel so sorry for him any night he is up awake but always on Christmas eve I feel the sorriest and the saddest as it is then it hits me all over again that our Christmas, Conor’s Christmas is different to what it could have been like. A Special Needs Christmas is a very different type of Christmas to any other I have ever known.
I am so thankful every single day that I have Hailey in my life because without her I wouldn’t have that real “magic” that Christmas brings. She has no idea that I am awake all night every Christmas Eve with her little brother. I remember when Conor was about 2 and a half, that particular Christmas was so hard because he had spent the night screaming and I was afraid of my life he would wake Hailey and she would see all the toys hidden in the kitchen waiting for me to put them under the tree once Conor would go to sleep.
He never did sleep that night at all, just screamed and screamed and head banged. I had to keep all the lights off down stairs because he was afraid of the tree so we sat in the darkness together, as he cried I would rub his little back up and down and I softly kept singing the alphabet song as quietly as I could, hoping by repeating the letters it would make him drowsy and he would sleep. He couldn’t sleep, so we sat there in the darkness waiting for Santa to arrive as I sang the alphabet song for hours just hoping he would drift off to that magic land of sleep.
Hailey woke the next morning of course so excited to see if Santa came, and of course he had. She came down stairs to see me and my lovely Conor dozing on the couch together.x I had to “make” myself be happy that morning, I was so exhausted but she had no idea so I was happy and so was she. I sat with Conor and watched her open all her presents. Conor didn’t want any of his presents so Hailey opened his and we left them in the living room for him, hoping he would like them once he got used to seeing them, which he did eventually.x I didn’t know it back then but 4 years later I would still be doing the same Christmas Eve Night watch with Conor.x
I look back on the last few Christmas Eves with some sadness as of course I would love to have those special Eves that many families get to experience each year. I would love to have a Christmas morning where Conor and now Jack would join Hailey in ripping open their presents all excited but I know that is not the way it is going to be in our family and i have accepted it now.
This year no doubt just like last and the one before myself and Conor will stay up watching for Santa, Hailey will wake in the morning and “help” Conor open his presents.x I do have more hope this year then last for Conor as I have seen the incredible progress he has made this year and I do honestly feel he has a better understanding of what Christmas is and who Santa is.x I have created Social stories and Visuals. I sing Christmas songs to him, and say “Ho ho ho, Merry Christmas” to him all the time now in the lead up to Christmas and every time I do I see a huge smile come across his beautiful face so that gives me real hope for this year that I might get to keep that Christmas magic long after Hailey finds out.x
Christmas can be so overwhelming for children in general but for children with Autism, SPD it can be a living nightmare as their anxiety levels go through the roof. When people meet Conor on a day to day basis they are so surprised at how calm he is, how happy he is, how settled he is. The reality is, is that he can cope day to day as long as his life has a routine, when I bring him to town we always have to go to the same places, do the same things or else things go terribly wrong (as they did very recently – a story for another time).
When it comes to Christmas, everything is so out of sync, there is the mysterious arrival of presents, the tree in the corner, the lights, the sounds from Christmas ornaments, the traditional Christmas scents, we all know all too well. Conor doesn’t completely understand who or what Santa is. This year is the very first time that I know he has some kind of idea what Santa is. He doesn’t yet understand what Christmas Eve/Morning is all about and it is sad to think he doesn’t completely understand that Santa brings him presents.
He falls asleep on Christmas eve just like it is any other night of the year (he may not stay asleep of course) and that brings a sadness in itself. I always imagined my future children would be all excited on Christmas Eve and we would all stay up late watching Christmas movies, eating Christmas treats together and I would spend the night telling them to go to sleep before Santa comes.
What actually happens is I spend that night trying to keep Conor as relaxed as I can and Hailey plays with Jack as best she can along side her daddy. If it weren’t for Hailey in the house there wouldn’t be that real Christmas Magic I remember feeling or having when I was a child myself. She is the light of my life and I would be lost without her. I dread the day she finds out as that will be the end of the real Christmas Magic in our house.
If things had been different I guess that magic would not be leaving our house for another 8-10 years when Jack would be in 4th or 5th class. But unless the boys understanding changes drastically my heart aches with the realization that our Christmas magic will end in the next year or two once Hailey “knows”. Yet I know I am so lucky as many Special Needs families don’t get to experience that magic that believing in Santa can bring to a home at all.x I am blessed to have the family I have.x
You see Santa can’t help us all.x He can’t help the boys understand Christmas any better than they can, he can’t take away their anxiety and unfathomable fear about the mystery of the presents or the the yearly appearance of the tree. He can do so much but he can’t do it all.x
Every year I go to the Toy Store and always go to the same lanes for Conor, the Toddler lane, Fisher Price and Vtech. I used to feel sad and wish he could use the toys for children his age but I don’t any more. I have come to realize that every year Santa brings the same types of toys, they aren’t “age appropriate” as Conor is almost six, but he loves them! He loves his dancing Teddy, loves his Vtech toy phone. His most favorite toy of all is a Vtech muscial toy that you would normally buy for a newborn baby and hang on the side of their cot to play music and shine lovely colors up in to the ceiling. I remember crying when he was about four as Santa was bringing him a new light up Newborn toy and I felt so sad. As lots of children his age would have been getting cars and lego, trucks and so on from Santa. Conor didn’t want anything from Santa so I made up a list for him as I do every year as I know what he is able to use and what makes him happy. Even this evening he was chilled out in his room with his newborn night light laughing as the shapes danced around in the ceiling.
The things that hurt my heart years ago, don’t really hurt me any more. There will be times when I am caught of guard and it will still hurt but I try to always remind myself, that Conor and Jack are happy just as they are. They don’t realize that there is any other type of Christmas to be had. They love the toys they love, they can use them and they make them so happy so I know I shouldn’t feel sad or feel bad that in some way it is my fault.
My heart goes out to new parents of children with Special Needs or to parents struggling as it can be so overwhelming for them as they watch their child’s siblings, relatives or children their child’s age have the type of Christmas they wish their child could have. I know how it feels, I know how you feel, but I promise it won’t always be so hard or so sad.xx
I will always have moments when I am caught off guard, that guilt you feel about Christmas and wishing you could make it more special is normal, I think all parents feel that whether their child has special needs or not.x You are doing the best you can right now and that more than enough.x
I know that Santa will be bringing Conor lots of lovely presents this year, I know that some will be what most would say are for “babies”, some will be Special Needs specific toys, some will not. The most important thing I will remember from this Christmas is that I did my best for Hailey, Conor and Jack, that I know they feel loved, that I know they are happy, and I know that they will love the presents that are meant for them, the ones that make them most happy.xx