‘He doesn’t open presents, understand Santa Claus, or notice the glow of Christmas lights.’: Mom to son with autism candidly details holiday grief, ‘Special needs parents, I see you’

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“Every year around the holidays, I feel myself start to become anxious. Maybe many do because the hustle and bustle of preparing for a busy time filled with things to do and places to go can be overwhelming. But that’s not why I feel that way.

I’m actually really good at juggling and multitasking. I have always been good at it because I managed stores and took those skills all the way through to parenting three children. But one of my children, my youngest, has special needs. He has severe autism. Because of that, holidays are stressful in a new way.

I find myself filled with the worry and anticipation of will he or won’t he? Will he understand? Will he participate? Will he care? Should I hope? Should I set goals and expectations? How realistic do I need to be? Should I even try this or that again? Will I be disappointed? Will my husband and his siblings? Will we be able to go? Will I be stuck at home again? Will aggression, self-injurious behaviors, meltdowns, his rigidity, and autism overshadow the whole day?

I go back and forth pushing those feelings down of hope and despair like a see saw in my mind. Holidays and Birthdays can be some of the hardest times for me and other special needs parents. Even after the holiday is over, these feelings of balancing the wins and losses in my tired mind take time to digest…until the next time when the cycle starts all over again.

My hope for the holidays with my son began long before he was even born in Christmas 2013. I was pregnant, and my daughter, Lilliana, and I started a new tradition. We started crafting our own ornaments. It was fun and we spent weeks creating them with different themes here and there. I made one in anticipation of my third child. We already knew he was a boy. We already decided on a name. Finn. I hung it on our tree that year and the next. I remember thinking the following year, ‘He will probably hang it himself.’

Finn was born in March like my daughter. Their birthdays are ten days apart. It was a type of milestone barometer for me. I would compare Lilliana’s experiences with his all the time. I had these expectations in my head of when he would walk and talk and what special occasions would probably look like based on what she did at the same age.

She was excited about Christmas at nine months old. She took her first steps on Christmas Eve. She could say close to 100 words at 16 months old. She knew her alphabet at 18 months. Animal sounds, colors, shapes, by two you name it, and she could do it.

But Finn’s first Christmas looked nothing like Lilliana’s. Neither did his second.

He smiled, he was happy, but it’s like he didn’t see any wonder in it. I didn’t think too much of it then, but I do remember being curious about the difference. After all, I had anticipated his first Christmas to be very similar to hers. Lilliana thought it was pure magic.

I rarely compared the boys because their birthdays were farther apart…I guess it seemed logical to compare Lilliana and Finn since I felt they would experience things around the same time.

Finn was almost two, his second holiday season. But he stopped sleeping at fourteen months. He wouldn’t try new foods. Not even at Thanksgiving. Not even desserts or cookies. He seemed rigid. He was getting upset all the time. And it’s like there was this distance growing.

Christmas came. I couldn’t get him to go to sleep on Christmas Eve. Then he didn’t want to open presents. He didn’t want to play with his new toys. It was completely opposite of what I experienced with our girl. It was confusing. I thought it was because he was tired. But…he didn’t hit his milestones anywhere near when she did either.

When I found out they would have their birthdays in the same month, I actually thought it would be pretty cool. It turned out to only be a reminder of what I lost.

I have a saying, ‘Autism is a thief.’ Years ago, it stole my son’s voice. His ability to interact and engage with us. His need to share what they call ‘joint attention.’ His willingness to comply. His desire to play with his two siblings. It also took away holidays and birthdays, at least in the traditional sense. The hope of magical memories began to fade the way his eye contact did.

The excitement and anticipation for Santa Claus was non existent. He didn’t even notice the glow from the lights on the tree. Actually, he didn’t even realize there was a tree. There wasn’t laughter or giggles as presents were being ripped open by three children. I only heard two on Christmas morning. No family pictures with matching outfits or a Christmas Card to send. Photos and staying still were a no go. And it was his turn to put the star on the top of the tree. We tried. I tried every year. I wouldn’t let the other kids just do it either. I held out every year…he would finally do it or there just wouldn’t be one. Why was it so important? It’s just a decoration on a large, fake, plastic-looking Evergreen.

Because it matters. All of it did.

Every parent has expectations for their child. Dreams. Hopes. Most of us imagine our own holiday traditions being carried on with our kids. And making new ones.

Family gatherings. Pictures with the man in the red suit or a large bunny and a visit at the mall. Baking and decorating cookies. Trimming the tree and adding the ornaments. A mischievous elf hidden around the house every night. Snuggling in tight watching Christmas classics and sipping hot cocoa. Leaving reindeer food and cookies and milk on Christmas Eve. Matching pajamas. Christmas concerts and recitals. Parades. Church. Costumes and Trick or Treating. Dye kits, candy, and Easter baskets filled from a fun egg hunt.

I could go on, everyone has their own. Some may be different. But one thing we all probably expect is the excitement. The anticipation. That twinkle in their eyes. The countdown on advent calendars. The moment when the big red book arrives in the mail and they start circling and making lists. The countless times we remind our kids to stay on the ‘nice’ list. The closer that big morning gets, the more they never stop talking about it.

You have to force them to go to bed the night before so Santa can come, but I waited for years with Finn. He didn’t care or notice his brother and sister gleefully taking part in all of these activities, nor did he want to be a part of them. Sometimes he just cried. Or he didn’t engage.  He showed no interest. He was literally in his own world… Lining up things. Watching the same car go down the same track over and over. Scripting. Screaming. Spinning. Crashing his head into things. He melted down. The busy atmosphere and the holiday rush was way too overwhelming and put him into sensory overload.

He couldn’t sit still to watch his sister perform..he still can’t. It wasn’t until four years old that he actually was willing to open a present. But even then, we had six gifts left unopened because a few were enough for him. I even left them out under the tree to see what he would do. He never touched them. I actually ended up saving them for his birthday.

I would pray for words. For him to acknowledge us and the decorations all over the house. I prayed that we could go to someone’s house and he would play or even sit still. One year he just spent the whole time pushing a cooler in their kitchen. I would hope he could handle some place fun so everyone didn’t have to miss out. Every year, I would say it would be different. And in some ways, it has been.

We have taken baby steps, year by year. Progress has definitely been made. Like the time I caught the moment when he actually noticed our little tree. But, I still get sad. I missed those years. The toddler years, the ones of him growing from a baby into a boy with his siblings, enjoying the most festive month of the year. The ones where he may have played with his big brother while they still enjoyed the same toys. Those days are long gone now. The gap is too wide.

Finn now plays with kitchen sets and pretend food while Landon is obsessed with Pokémon and Minecraft. I feel like I missed the years when they would all be on the same page for a bit. The years before my older kids stop believing in Santa and participating in all of it. She’s almost thirteen, and Landon is eight. I don’t think there’s going to be a year where they share that.

Finn can recognize Santa, but he doesn’t have any comprehension of the ‘belief’ of him. I don’t think he even knows about the Easter Bunny. He doesn’t understand the concept of making lists and having good behavior all year so that Santa can come deliver him presents on a sleigh pulled by reindeer. He doesn’t know why his sister believes beyond her peers…because Santa brought back her beloved Bunny Bear when he was lost on our way to Florida, and that sealed it for her. No one has been able to talk her out of it yet…she still believes in him and the magic. And he should be in first grade. In a school. Making crafts or being part of a program with his peers, making friends. But he’s not. And the things he still can’t do or the wonder of the wont’s still keep me up at night. I care about what wasn’t as much as I care about what isn’t. I know I should be happy that he’s more aware now.

I cried buckets when he finally put the star on the tree…it was such a huge moment for us. The picture I took was blurry the way my vision was watching him do it—my eyes filling up with happy tears. Last year was his biggest Christmas yet. And this year, he already sings Christmas carols loudly and has requested his own selections on our Alexa.

But the toys I shop for will still be typical for a toddler, not an almost six year old. He just started to engage in imaginary play last year, something he should have been doing for years now. He’s even making those homemade ornaments himself and proudly hangs them on our tree.

Last year, we went to a parade as a family. But unfortunately, those events are a ton of preparation and work. They usually leave us exhausted because of just how hard it is to go anywhere with him. And they don’t happen often. Because he still has no sense of danger, He will elope if we let go of his hand. Physically, he’s getting harder to manage. But, I try to focus on the positives. He got through loud fire truck sirens and huge crowds. He was dancing proudly with his festive earmuffs and light up necklace. It’s a memory this Mama will cherish always.

So, why am I sad?

I guess because I still wish for it all to be the way I envisioned it when he was growing inside me. The traditions. The outings as a family. Will he one day not fear the sound of fireworks while he sees the beauty in their sparkly glow? Will he care about the golden egg one day like Lilliana? He’s missing things. Or maybe it’s just me…or us. I know he doesn’t realize it. But we do. And his siblings miss things too.

People tell us to focus on the positive. To count our blessings. And I do, but last year I realized it’s also okay to feel these emotions. I can’t and won’t apologize for the waves of grief anymore. Because unless you’ve seen your child disappear before your eyes, you don’t know.

If you’ve never lain awake in the middle of the night wondering what your child’s voice would sound like. If you’ve never lived it. Hearing those words. An Autism diagnosis. It’s painful. It’s letting go of the dreams. Of the visions you had. And his was in December, which made it worse. Especially around the holidays. And I know I’m not alone.

There are others out there who had their own versions of what this month every year and Christmas would look like. And I’m here to tell you, it’s okay to wish things were different. That you didn’t feel so isolated from friends and loved ones because you can’t leave your home. Or that your child doesn’t do the things that you thought they would, things kids their age are typically doing this month.

It’s understandable to be heartbroken if you’ve never decorated a tree with your child or if they haven’t opened presents on their own or with their siblings. It’s okay to be sad if they never dress up or dye Easter eggs. It’s okay to cry if you had to stop going to church. It’s fine to hope that one day they can. It doesn’t mean you don’t love the child you already have. It just means that some parents, and perhaps you, just long to see that glimmer of wonder and awe that most children get around those holidays.

Some of us spend months ahead creating that magic, just to see the look on their child’s face. And Autism can take that away. It can make us crazy and unbelievably sad. And the holiday season seems to just magnify those feelings of isolation and our challenges. It shines a glaring light on what was lost and what we are missing. It makes me think of what could have been and what should have been for my ‘Three Little Birds.’

Christmas can be a time for parents that is filled with stress and heartbreak as their child screams and breaks ornaments. Halloween can be a lonely time when you never leave your home with a child that refuses to wear a costume as your street fills up with loud children shouting ‘trick-or-treat!’ Maybe you have more than one child and one can do these things and the other can’t, or you and your spouse are splitting up and the holidays aren’t that picture of togetherness that you imagined a family would have or like yours growing up.

It can be a time where laughter is replaced with silence and the only thing that is on their list is to hear their child’s voice. It can be a time of year where parents are visiting their child in a residential facility instead of gathering in their own home, because they were unable to care for them as they got bigger and stronger and aggressive.

So, to the parent who is hoping this Christmas, birthday or holiday will be better or easier. To the parent who’s only wish is that their child will speak again or ever. To the parent who just longs to go out as a family successfully. I see you.

And to those who know a parent like us, just listen with your heart. Because we really are trying to find the joy…we are cherishing every miracle, believe me. But, we just want what you do with your child.

For ours to be engaged and participate in holiday activities. To not feel left out and isolated from the world. To watch them enjoy it and build memories with siblings and family. To carry on traditions like the ones we had when we were growing up. And to share the magic and beauty with them.

Because it matters. And it’s okay to say it does.”

Courtesy of Sheryl St, Aubin

This story was submitted to Love What Matters by Sheryl St. Aubin of Three Little Birds. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from Sheryl here:

‘She fell into my arms, tears falling. ‘My boy was non-verbal. He let himself out the front door.’ She tightly clutched his blanket, and described a boy just like my own.’: Special needs mom talks anxiety, missing children statistics

‘We see you put self-care on the backburner, skipping workouts and coffee with friends for an IEP meeting. You are miracle workers, moving mountains by sheer will.’: Husband pens sweet letter to special needs moms, ‘You’re the epitome of beauty’

‘Late-night milk run, huh?’ I was standing in front of a tired momma in Target just before closing. ‘Go get that precious baby to bed. I got you.’: Woman shares act of kindness for stranger

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