Embracing life with 2 children who are 'predictably unpredictable'
Parents of kids with Fragile X syndrome have learned to live in the moment
Note from the author: I have three children under the age of eight. The Beautiful Mess series is an attempt to share some of the wisdom I have sought out in an effort to be a better parent.
Asked to describe their life, Kim and Steve Weiss looked at each other and laughed.
"Chaotic. It's always interrupted. There's never a dull moment in our house," said Kim.
Even though her boys are 14 and 12, she said it's more like raising two-year-olds.
"You have to be on edge all the time. It's constant demands."
As if on cue, 14-year-old Tenzin walked into the room, carrying a dance game for PlayStation in one hand and a Dance Dance Revolution mat in the other. He wanted to play the game right then.
Kim reminded him that they don't have a PlayStation, but he'll get to play it later at his grandmother's house. She promised to set up the mats in the living room for a dance party soon.
Tenzin and Elliot have Fragile X syndrome. It's a genetic condition that causes a range of developmental problems. It's often diagnosed as autism.
Kim rattled off a list of characteristics that go along with the syndrome: low muscle tone, speech delays, significant cognitive delays, difficulty working with numbers. There are also strengths associated with the syndrome, such as musicality and the ability to mimic sound.
Elliot will often speak in lines from movies and Tenzin has perfected saying "hello" in a way that sounds exactly like his grandmother entering the room.
The Regina parents have worked to support the boys' interest in music. They take dance classes, and Tenzin has a DJ turntable set up in his room. The 14-year-old often walks around with carrying a portable dance mat that he'll plop on the ground anywhere there is music.
Predictably unpredictable
That night, Tenzin planned on performing with his class at a dance party. He also hoped to join his friend on stage for a DJ set.
They had been talking about this plan for a while now, so the boys knew exactly what to expect. It was even written out on a list, which they referred to several times over the day, a way of easing the boys' anxiety.
When the boys are overwhelmed with anxiety it can manifest as disruptive behaviour. They cover their ears, run away, throw things or even attack their parents.
"We are always thinking ahead and we are always on edge, because they are predictably unpredictable," said Kim.
That unpredictability can make venturing out of the house a daunting task. Kim said she avoided taking the kids to the grocery store for many years because it was just so much work. She has hundreds of stories of outings gone wrong.
"Being the eternal optimist: that helps. I always thinking it's going to go well and it always doesn't."
A lot of people don't see the joy we often see.- Steve Weiss
Steve likens it to rolling dice every time you leave the house.
"They want to be in social situations, but they are going to do really inappropriate things. They are going to get into people's stuff, and they'll probably steal people's juices and rip labels off of everybody's drink. We are the navigators in other situations making sure everyone is OK, and they are OK to be there."
The family has been asked to leave social situations because people found the kids too disruptive.
"That to me lets me know there is a lot of work that needs to be done so that people are more accepting of having people with special needs in their communities and in their environments," said Kim.
She recalls a particularly painful comment from a well-intentioned friend when Tenzin was younger. Her friend said: "I give you so much credit for taking him into public."
"A lot of people don't see the joy we often see," said Steve. "When we are home, they are happy. They are funny."
The family knows what it takes to keep things on the rails: routine, exercise, a healthy diet, time in nature. It's lessons that apply to every family, but are particularly acute for the Weiss children, as things can easily go sideways when these basic needs aren't met.
Even though it's easier to stay at home, Kim and Steve are committed to putting their kids in new situations.
Even something as seemingly simple as going through a drive-thru requires preparation.
"There this huge anxiety that comes right before you pull up to the window to get your food," said Kim.
She makes sure the windows are locked, then prepares the boys. She said when they are anxious, addressing them directly can make things worse. Instead, she'll talk things out in first person. She'll say: "I'm feeling a little anxious right now. I'm going to take some breaths before I get my food ... when the lady hands us our food should we throw something out the window? No, we should just get our food and say thank you and pay."
But through all of the challenges, the couple finds joy in small victories.
The family spends a lot of time outdoors, where the boys feel most comfortable. Taking off your clothes at a play date is not acceptable but going naked in nature can work.
They attend camping music festivals. They frequently go mountain biking, swimming and downhill skiing.
Kim said her proudest moment as a parent was potty training, "which sounds ridiculous but it's huge."
Steve said he was particularly proud when his oldest son asked to walk to school by himself last year.
"That was after five years of us or caregivers walking him to school every day, and the fact he could do that, there was so much nervous energy but so much pride."
It's not possible to raise these types of kids without a really strong community and strong family.- Kim Weiss
Being a parent to two kids with special needs is more than a full-time job; it requires a village to support the family.
"Early on we realized we needed to ask for help — a lot. That was really hard for me. I grew up being really independent and thinking I can do anything," said Kim, "It's not possible to raise these types of kids without a really strong community and a strong family."
Their community includes a social mentor who comes to the house to help with care after school, a dance group for Tenzin, a swimming club for lessons, a specialized sports skill building program, an adaptive ski program, and lots of time with family.
A lot of Kim and Steve's job as parents is educating other people how best to support the boys.
The phone rang. Tenzin's friend was on the line. He was supposed to DJ with Tenzin at a dance party that night. He was a little nervous about how it would go.
"We informed everyone that it might happen or that it might not happen, depending on Tenzin's level of anxiety," said Kim. "We have to navigate every social situation by modelling: it's OK, you're OK, but it's OK to feel anxious, they may do this and this is what you can do."
Despite all of the assurances, the couple know things may not go as planned.
Recipe for parenting
While Kim, Steve and I were in the living room talking, the boys were in the kitchen rummaging through the cupboards. They dragged out all of the ingredients for chocolate chip cookies and dumped them on the counter.
The boys like to bake — a lot.
When we joined them in the kitchen, they had already mixed the butter and flour.
They took turns cracking eggs and adding them to the bowl, sampling little chunks of dough along the way.
Watching the family in the kitchen, it's hard not to draw metaphors.
We appreciate the cookies for what they are and not try to make them perfect.- Kim Weiss
"Although we start with a recipe usually, it never turns out. There's a lot of variables. It's like parenting," said Kim.
The cookies were missing sugar and there were a few eggshells in the dough, but Kim and Steve stood back while their oldest son took the lead.
"For Tenzin to make them on his own he feels a sense of pride and confidence, and we have to sit back as parents and allow him to make those mistakes and learn from those mistakes," said Kim. "We appreciate the cookies for what they are and not try to make them perfect. There's no recipe for that."
It's a lesson all parents can use: letting go and letting our children make mistakes. Pushing ourselves to go out of our comfort zones because the skills acquired in those moments will ultimately be the most useful to our kids. And just meeting our children where they are without trying to change them.
And don't forget the sugar.
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