An Autism Christmas
Christmas is supposed to be a joyful time. Pre-autism it was my favorite. I love the decorations and the food and the family. The snow. The coziness. The children opening presents. The list goes on. Christmas was my favorite.
It’s different now. Just like everything post autism. There are too many expectations. I used to get sick to my stomach just thinking about it approaching. Except now I have a wild and rambunctious 3 year old who LOVES Christmas. He talks about Santa non-stop and how he is going to stay up all night long and meet him. And how he wants a crane. And 74 other things.
We are writing letters to Santa and watching Christmas movies. He even told me that he loves our Christmas tree more than anything in the world. My heart is full with his joy.
I finally have the child I wanted celebrating Christmas in a normal way. It should be fine, right? I get to visit Santa and bake cookies. I have what I always wanted. Except, everything has an autism veil over it. As I looked back at Christmas pictures to share in this post I realized they were all of Sawyer. None of Cooper. He wouldn’t take a picture with Santa. Or with people. Nor would he celebrate.
Having Sawyer doesn’t make the sadness go away. I need to stop thinking that it will.
Cooper was born December 6th. I still remember his first Christmas. We lived in northern Minnesota and our family lived 3 hours away. We were expected to go visit for Christmas. I did not want to go. Cooper wouldn’t nurse. He wouldn’t sleep. It was terrible. I’m not going to lie. It was so unbelievably stressful.
But, Jamie convinced me to go. I am still angry about it. The drive was awful. Cooper didn’t sleep. I was uncomfortable and nervous and fat. The list goes on. I spent the whole time nursing and pumping in a bedroom.
But we got through it. Here is a picture of how much he loved it.
A lot of people ask me if I saw a change in Cooper at some point. Did his autism appear over night? Was it gradual?
I have numerous thoughts on that. So many I could probably write a book. 🙂 Or a blog.
Cooper was born autistic. I have no doubt. He was a very stressed out baby. He didn’t sleep. Like ever. As a newborn he slept 8 out of 24 hours. Max. It was insane.
As a baby he LOVED to eat. He couldn’t nurse though…and looking back that had to do with his Apraxia. So I pumped for a year. Cooper weighed 25 lbs at 6 months. He was a moose.
At his first Thanksgiving he was almost a year old. He ate everything we put on his high chair tray.
That was his last real meal. He stopped eating 98% of foods that week. To this day his diet is tiny. Another huge autism leap for him was his second Easter. He was a little over a year. He stopped sleeping longer than an hour at a time. Throughout the night he would wake up 10-12 times screaming.
It’s funny how I associate those things with holidays…Thanksgiving, Christmas, Easter. Talk about post-traumatic stress disorder!
The holidays tanked after that. People, even family, (its better now) find Cooper to be stressful. Hell so do I. It’s the truth. His anxiety and intensity are at the max over the holidays. New places. Lots of people. Expectations. It’s a lot for adults. It’s even more for autistic kids.
He doesn’t sit down for a meal. He doesn’t eat with the family. He refuses to put his Kindle down. He won’t open presents. That’s hard on grandparents and family. I see it. I started to try and avoid it. I tried to keep him home. I failed. But I would try.
Then Sawyer was born. We started doing things with him. We’d bring Cooper but he couldn’t handle the lines. Or the crowds. Any of it. Here is a picture of Sawyer with a Sensory Santa.
Cooper was screaming. Casing the room looking for escape routes. I was sweating. It was terrible.
In saying all of this…we had a major breakthrough this year.
Cooper is almost 6. And this is the first year he noticed the Christmas tree. He attempted to decorate. He added lights and threw ornaments on the tree. This is huge. As his brother talked a mile a minute and helped with every single aspect of the tree, Cooper floated around us. I had told myself when we were getting the tree not to get my hopes up. Actually, that’s not true. There are really no hopes at all. That sounds sad and I don’t mean it too. What I mean is I know my kid. He has autism. He doesn’t participate or join. And that’s ok. We’ve moved on.
But this year was different. I cried. I laughed so hard at how cute he was.
I know the holidays will be stressful again.
He still doesn’t care about presents. He doesn’t understand the concept. The kid literally has no wants. His needs are met. He has WiFi and his 2 kindles and his own DVD player. He has snacks. And milk. He has his blankets and his pictures and his train books. And that is it. He needs or wants nothing more.
Cooper even went as far as ‘asking’ me to have a little Christmas tree in his room. I have two small trees. Of course Sawyer HAD TO HAVE IT IN HIS ROOM. When Cooper heard that he patted his chest, patted the tree, and pointed to his room. Pretty great stuff.
I can look at this in two ways. I could say we are blessed to have such an easy child. He knows no greed. He is content and happy with very few things. That is a wonderful trait to have.
But the other side is where I tend to lean. If Cooper wasn’t so loud I fear that he would be invisible and forgotten. That is scary.
What am I wishing for this holiday season?
It’s the same as the past 6 years. I want my baby to talk. I want him to say ‘mom.’ I want him to eat a meal with us. And engage with his family. And hug his brother. I want him to sit by the Christmas tree and open up a present. I want to see him get so excited that he can hardly stand it. I want him to run to me and show me his presents. I want him to say something so cute and funny that everyone laughs.
I want him to be potty trained.
That is what I want. I want to get to know my son this Christmas.
I continuously remind myself that it is not a race to the finish line. We are crawling along. This year he helped decorate the tree. Every single morning he asks me to turn on the lights. He sits by it at night. He squeals with delight. He is so happy.
This is more than last year. I could tell myself it took years to get this far. I could also tell myself that this could be it. It could plateau here. I often feel the negative tug me down and I have to focus on the positive. That is the key. Keep moving forward. I need to be thankful for his progress this year.
So much can change in a year.
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Your honesty and your unwillingness to sugar-coat the truth are so wonderful. You have such a gift for writing. I check this blog almost daily for updates about Super Cooper and your family. Thank you for sharing your ups and downs and struggles with us. On days I feel so sad I feel my heart could literally tear in two, it helps.
Hi. I hear you. It is so hard having a typical child, balancing that world with he life of a child who is, let’s face it, severely disabled. You don’t use the term often to my knowledge. I didn’t for a long time. I started to because it was the only way I could finally start to wrap my head around this life. And it isn’t like I have it wrapped around it by any stretch.
As Christmas approaches and I struggle for another year to figure out how to navigate similar problems, I remind myself of one thing, something that I’ve learned by having a 12 year old typical boy. Essentially because of hormones in food, a teenager. My disabled son Bennett gives me a singular gift in thus life that gets me through the worst of the worst. The knowledge of knowing what unconditional love actually is.
He can’t necessarily SAY it, not without a shitload of prompting, but his actions show me that he feels it. He isn’t motivated by things like greed or revenge or resentment or hate. You touch on this a bit in this post. That’s what I focus on the most over the holiday.
Love, unconditional. That’s what he taught me. And teaches me, still.
I’m so glad he got into the tree! And you’re right: you never know what will happen next year.
We had a tough early road with my daughter. My early Xmas pictures of her look a lot like Cooper’s! She was a difficult infant. At 1 she stopped making eye contact with everyone and stayed non-verbal until she was nearly 2. Then the rascal went from not talking to talking and reading within 9 months. A spectrum diagnosis was often discussed. Now “they” have settled on ADHD. I think it’s probably a better fit. Not perfect, but better. Meds have helped a whole lot, and she’s mopping the floor with first grade academically. Socially it’s a different ball game. The ostracizing has started, and it’s so damn hard to watch.
My son had definitely been my “easy” kid. I feel so grateful for him, but then I feel guilty for being grateful. Tough stuff.