Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst

There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely.

For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available that Brennen can “play” with.

Christmas shopping has become a challenge, and though I try to resist it, every year I inevitably find myself in a toy aisle, tears streaming down my face with the realization, once again, that I am living in a starkly different world. While I dream of wrapping up the one thing my child will adore, the one thing that will attract his attention, ignite his creativity and give him opportunities to play and learn and grow, it is unfortunately not that easy. 

Finding products and toys that will work for Brennen is difficult. I look at items, analyze their potential, and ultimately decide that they are not suitable—that he can’t physically manipulate them on his own, and will be a complete waste of money. Sometimes I will purchase the toy anyway, in hopes that some miracle will happen and his skills will improve. 

Sometimes I just want to feel like any other parent shopping at Toys R Us, who can pick out a present for their child without having to stress about whether or not it will be used for its intended purpose, or be added to the pile of stuff that goes into a closet and never comes out.

Christmas is different with a child with special needs. Brennen can’t write a letter to Santa. He can’t tell me anything that he would like to ask for, or what he hopes to find underneath the tree on Christmas morning. He can’t get up in the middle of the night to exclaim his excitement that Santa has come, and he can’t unwrap his own gifts. 

I don’t even know how much he understands about Christmas or Santa Claus or traditions or magic, but we do it anyway. We bring Christmas into our home and we celebrate with all of the things that a little boy should have around him—love and light and wonder and joy. We do it for him, and we do it for us, as a family. 

It is important for Andrew and I to carry on with some of the things that meant a lot to us growing up. We love Christmas! I still get giddy thinking about my favourite Christmas songs (so many I can’t pick just one!), favourite Christmas movie (It’s a Wonderful Life), and favourite Christmas treats (my Mom’s (used to be Nan’s) apricot raisin cake).

My most cherished Christmas memories from when I was a child are never related to a present. They are memories of going to mass on Christmas Eve with my father and grandfather, Dad reading The Night Before Christmas to my sister and I no matter how late it was (every year until we moved out), having turkey dinner on Christmas Day with my Mom’s family, and a sing-along at my parents’ annual blow-out Boxing Day party (that is still a tradition today!). My favourite memories revolve around people, family, spending time with loved ones and celebrating the holidays together. This is what matters most to me, and this is something that I can continue with my own little family. 

Brennen enjoys the sights and sounds of Christmas. He loves to look at the twinkly lights on the tree, and we have Christmas music playing constantly. He is happy when he is surrounded by people, and he certainly knows that he is loved.

We have also started some new traditions. On Christmas Eve, instead of going out, our family and friends now come to our house to see Brennen before he gets tucked into bed for the night. Our schedule of events now includes the Janeway Children’s Hospital Christmas party, Easter Seals Breakfast with Santa, and the Rainbow Riders Live Nativity. These have quickly become our favourite and most anticipated events of the season!

We don’t go overboard with gifts. On Christmas morning, we take time to help Brennen unwrap each one, enjoying the sound of ripping paper, and the anticipation of what’s coming next! We focus on the importance of what the holidays are truly about—family and togetherness, kindness and giving, magic and wonder. 

 
If I were to give advice to parents of children with special needs this Christmas, I would have to say not to put too much pressure on yourself, and don’t expect things to be ‘perfect.’ 

The holidays are stressful for all parents, but our children’s special needs add an extra degree of difficulty. Try not to get caught up in the details, and just enjoy the time with your family. It may not look the way you had envisioned it, and it may not run as smoothly as you had hoped, but it can still be special. Focus on the positive things, and think of all the things you are thankful for. Find happiness in your child! 

Bruce Templeton, who has visited with 1,500 children dressed up as St. Nick, writes in The Man in the Red Suit: "It's your presence with your family that matters a whole lot more than anything that's under the tree. It's your presence, not presents that counts."

Julie Brocklehurst is a writer, an advocate and a mother to a little boy with cerebral palsy. She created her blog Tiptoeing Through as a place to share some of her thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Every month in her Tulip Tales series, Julie features a child with special needs from Newfoundland and Labrador and shares their amazing story. Julie is a director on the board of the Cerebral Palsy Association of Newfoundland and she runs a child care program for children with disabilities.

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The 'perfect' holiday: make it a family tradition

By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it’s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He’ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I told him that my brother was sleeping over on Christmas Eve. He was very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell’s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren’t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: “No one in my house.” He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad’s room helped resolve the situation.

Going to other peoples’ homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal “It’s time to go home NOW” switch is thrown and we need to be ready to move pronto. On a positive note, his ability to tolerate longer evenings out has increased over the years so there is hope!

Another issue we face is managing our family’s expectations of the holidays. It’s our job as parents to try to make sure our children enjoy this special time of year. But to do that, we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with our family’s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law’s home. It was a loud, boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't happening.

“But we should all be together," she said. “That’s the way it’s supposed to be.” She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to have to explain to her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual occurrence, it does get easier as the years go by.

While your family may or may not get why you set things up at celebrations the way you do, you know what’s best to ensure your kids are happy and safe. And along the way, maybe we can all start a new tradition or two!

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This Halloween, hand out more than a treat!

Denise and daughter Zoe share a cool way for Ontario readers and their kids to raise funds for children with disabilities at Holland Bloorview while winning prizes and celebrating Halloween.

The Change for Kids program features a coin card with 20 coins to hand out to trick-or-treaters. Kids get the chance to win amazing prizes, and for every coin entered at Change for Kids, Scotiabank will donate $5 to Holland Bloorview.

Don't forget to pencil in these accessible Halloween parties (too often kids who use wheelchairs or walkers can't get up stairs in the neighbourhood to collect candy):

Change for Kids Halloween Party at the Ontario Science Centre on the evening of October 27, 2012 and Change for Kids Monster March & Fun Fair at Holland Bloorview on October 28, 2012.

The Halloween spirit has a long tradition at Holland Bloorview. Every year students in our school walk through the hospital to show off their imaginative costumes.

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Armadillo anyone?

Ben has been 'thinking' on a Halloween costume. It had to be an animal, he said.

Today he decided. At first he told me it was an anteater -- he told me this by finding a Zoboomafu show about anteaters.

Then, just as I was putting out word that I needed help on an anteater costume, he brought me the voice software on his iPad to let me know that it wasn't an anteater after all -- it was an armadillo that he wanted to be.

Even though Halloween is Ben's favourite holiday, I always find myself about a week away from the event in the same situation: in search of an unusual costume. Where on earth do you find an authentic looking armadillo costume -- one with scales that look like armour?

Ideas? Anyone?

There is a Halloween dance at Ben's school this Friday and he wants to go.

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My boy, the ladybug

Last night I spent four hours sewing black fleece spots on a red tuxedo jacket with tails.

Halloween is my son Ben’s favourite holiday of the year. Weeks before, he begins asking everyone, in sign, what they’re going “to be.” You’d think that after all these years I’d be proactive and have his costume ready months in advance.

Instead, I wait till the night before. First I race around the large local thrift store, looking for a bargain. But as time runs out, I inevitably end up in the most expensive costume store.

Ben has been “thinking” about what he wants to be for weeks. He finally settled on a ladybug, like Francis, the aggressive male ladybug in the movie A Bug’s Life who’s frustrated that everyone mistakes him for a female.

Yes, it’s unusual that a 15-year-old boy wants to be a ladybug, but my son is one-of-a-kind.

Like the mother who wrote in the New York Times Motherlode blog this week When a boy wants a tutu, I wondered if I should steer Ben toward a more boy-appropriate costume.

“What about a cockroach?” I asked eagerly, knowing he had his heart set on being a bug. He shook his head vehemently.

When my husband and I finally ended up at the expensive kids costume store, there was, of course, no male ladybug costume to be found. However, there was a bright red tuxedo jacket with tails – the perfect twist on a ladybug costume for my son, I thought. I could stitch the black spots on it.

The jacket was made out of cheap cotton. The price – $80 – was not cheap. We bought it and the store gave us black fleece scraps for the spots. We also bought devil’s wings (which were red and black, and could double as a ladybug’s), a black face mask and antennae with eyes at the top that flash on and off.

At home, D’Arcy cut the ladybug spots out with a razor, and I prepared to sew them on. First I grabbed the large kitchen scissors to cut the tag – which I knew Ben wouldn’t tolerate – out of the collar. I inadvertently cut a hole in the $80 jacket!

Now I not only had a dozen spots to sew on, there was a hole to fix. Did I mention that I am not Martha Stewart and we do not own a sewing machine? Luckily, I remembered a stitch my aunt taught me when I was seven and did delicate embroidery on tea-towels.

This morning, when Ben donned the costume, he was very pleased. The photos we took didn’t materialize in my inbox as planned, so I had to improvise with a Bug’s Life image of Francis above.

Happy Halloween!

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