Parenting autism – Mom Dad CuppaKids

Finding the Edge of Comfortable

by Jenn & Chris on July 19, 2016

When everything feels icky & squirmy & totally uncertain

Mom Says:

I was a bulging, sweating, 8 months pregnant hot mess in the middle of one of the hottest heat waves we have ever experienced. My husband will recount to you tales of woe and suffering as he endured the words “I’M UNCOMFORTABLE!!” more times than I care to remember. It has become a standing joke between us, one that is typically accompanied with boohoos and mockery to indicate said Uncomfortablist is being entirely unreasonable.

On a happier pregnant days — On a happier pregnant day at the cottage

The word comfort has been an enemy in so many ways throughout my life. At the start of our marriage, I would share with my husband (often) my thoughts that the minute we were comfortable, we were done for. Comfortable meant being normal, stagnant, conforming and lacking passion. I didn’t want us to ever get there. I wanted us to strive for date nights and spicy moments so that the notion of comfort would never take hold.

I am often found pushing myself past my comfort zone. Whether it’s skydiving, scuba diving, motorcycling, bungee jumping, or climbing mountains, I have done it all. At the start of every one of these adventures, I am scared poopless. Every. Single. Time. Until I do it & then realize that that wasn’t so bad after all.

The whole fam came out to support me when I jumped out of a plane. I hope we are teaching our kids to be fearless. — The whole fam came out to support me when I jumped out of a plane. My only hope is that we are teaching our kids to be fearless.

I like it & I don’t like it. It feels icky and squirmy and often disagreeable. Yet something about pushing through the hard parts, to conquer and achieve a challenge on the other side makes it so worth the initial grossness of it all.

The thing is, I have started to think of my comfort zone as exactly that. It’s just a zone. It’s not your prison cell. Your zone can take on different shapes or sizes. The more we push, the bigger our space of allowable adventure becomes. We just have to keep pushing out the walls.

As we hit our 3 month window before we leave on our #CuppaRTW Round The World trip, I have recognized I have that uncomfortable feeling once again. This feels new for me because this time it’s not just me getting out of the zone. We as a family are taking this on, all parts of it feel foreign and unsettled.

I have been trying to explore what is actually causing these whirl-a-gig butterflies inside me and I think for the most part I have figured it out.

We are planning to not plan which for a planner makes things all kinds of up in the air. I feel like I’m on a roller coaster that’s pulled out of the station and already on the ride but need to get past the urge to hold my breath through the whole thing because its a long time before its over.
I am curious how we are going to manage surviving as a family 24/7 over the next many months. We are a strong team and we all love each other dearly but we already know we are going to plan for breaks or we will end up killing each other before we get out of South America. We have even invented a safe word to roll out on the days for the kids (or each other) are driving us so batty that we might say something we regret. We are also planning on taking days in which one of us takes the kids and in which we each take one kid to keep things different and exciting.
Very soon, we will no longer have a home. We are letting go & rid of most of our stuff. The grounding stuff. As we start packing up, we are starting to work on how to create a new version of “Home” for us & the kids. We will have no place to come back to and the concept of coming home will now have to truly live in “home is where the heart is”. So how do we teach that to our kids?

I know these are all just growing pains as we start this new chapter in our life. I just can’t wait till my brain is settled on the other side and starts feeling more comfortable (baahaaahaa) with it all.

Climbing Kili was something I thought impossible. Until we did it.

Dad says:

oh, the pain of comfort…

I am, unlike above, comfortable with comfort to a point. The balance I constantly try to strike is to look around and appreciate accomplishments before running off to literally jump of a cliff. There is little joy in a life so hectic that you forget to breathe, look around, smell the roses, you know, LIVE…

Part of joy is enjoy, which is a poorly spelt word that should be in-joy. Get in the moment, relish it, then set you sights on the next adventure.

Changing the World Travel

Who ARE MomDadCuppaKids?

by Jenn & Chris on June 28, 2016

We can all agree there is so so much noise on the internet. For us, its really important that we don’t want this blog to add to the clutter. We want it to be fun, informative, open, and genuine.

As we get closer towards to leaving on our #CuppaRTW: Round The World Adventures, we’ve been thinking a lot on how to bring fresh & new ideas here.

Our hopes are that we can help inspire people one way or another and we do believe we can do it ways that will truly provide value.

But we realized first and foremost that you might not really know us that well.

To keep it simple, this is us.

We’re a bit goofy, awfully fun and a pretty easy-going family who like to dance and who want to live life to the fullest while we are here.

To decide if you would like to follow along on our journey, here are a few

FUN FACTS on #TEAMPOWELL

Chris has a dry, sarcastic, witty sense of humour. Jenn is more silly, cheeky and out there raw.

We met at the airport, during an ice storm at which time Chris convinced the airline to fly me all the way across the country to turn around to get back to the middle as it was the only flight (his by the way) leaving that night.

We love the outdoors and grew up at the cottage. Water is our peace place.

We are the couple that gets put at the table to keep the conversation alive at a wedding or an event.

We were on the Marilyn Denis Show ( a national TV show in Canada) for the Couples Weight Loss Challenge and both lost 40lbs in 5 months. They dubbed us #TeamPowell and its stuck ever since.

We truly are a team and have supported each other through careers, entrepreneurship, extensive travel, special needs and more. Family is key and our rule is don’t ever keep score.

We are warrior advocates for our special needs son who put far more emphasis on the “special” than the needs, working hard to make life more about managing through Autism than Autism leading the conga line.

Our kids have picked up our love of dancing, adventure, exploration and sarcasm.

We climbed Mt. Kilimajaro as a way to celebrate 2 milestones- Jenn’s 40th bday and our 10th Anniversary. It wasn’t as hard as we thought but man were we awfully smelly/put our marriage to the test in the long run.

We love hosting parties (Jenn & Lauren have a particular love of turning everything into a theme) and it would be normal to find people dancing in our living room at 2am.

We believe that we are all one. That one of the essential values to pass on to our kids is to give back & pay it forward wherever we can. To always stop if someone needs help.

We have no idea where this part of our lives will take us next but we are hoping that by journaling this we can create something amazing & positive.

Please let us know what you would like to see so that we can make this the best blog it can be.

And if you have friends who you think would enjoy our energy & sense of humour, please pass us on!

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Family Matters Travel

12 Ways to Survive Disney With Special Needs

by Jenn & Chris on May 20, 2016

For many parents the thought of a Disney Vacation brings visions of apocalyptic temper tantrums, crying, hungry and over-tired children.

For parents of children with special needs top that with a tenfold of anticipated stress and anxiety that accompanies the thought of maintaining a manageable environment while “doing Disney”.

Our main goal was to make this trip as easy and enjoyable as possible. Thinking through the many catalysts that could trigger a breakdown & the tools that we could use to manage them, here’s how to take the cringe-worthy worry out, survive Disney with special needs, and keeping everyone smiling.

12 Ways to Survive Disney with Special Needs

1) Teach Spontaneity

I know this sounds kind of ridiculous but kids with Special Needs (especially ASD/Autism) thrive on routine. Yet life doesn’t adhere to a particular schedule no matter how hard you try. We spent a lot of time prior to the trip working on “what if’s” and “Big deal or little deal?” scenarios. Our goal was to get the kids ready for plans not working out the way they should and keep expectations of routine low.

Kids traveling by boat to Disney — Another way to get to & from Disney is by boat from the Polynesian

2) Be Strategic

As we started planning, we looked at the busiest traffic times of Disney and chose one of the lowest of the year. This allowed for low volume line-ups and often discounts on packages and accommodations. We think this is one of the MOST important parts of being able to survive Disney with special needs.

For the record, we went Sun-Thurs the first week of November which rarely saw a line-up over 20-30 minutes & allowed us to experience many more rides in a day.

3) Make it EASY

We booked our flights and hotel using Expedia, which offered comparisons and made choosing simple and quick. To save money, we flew out of Buffalo to Orlando, and then took the Magic Bus to Disney. This direct and comfortable shuttle system took our luggage straight to our hotel, and our bags were delivered shortly after we arrived directly to our room. This made getting through the airport a snap, which is rather incredible and definitely something I recommend for anyone travelling with children, special needs or not.

4) Stay on site

We chose The Polynesian Resort for a couple of key reasons. The first, is that it is one of three on-site resorts that connect to Disney via the Monorail. We got an incredible deal for a multi-family room making access to and from the park quick, easy and fun throughout the day. It is also the best resort to watch the fireworks nightly with a perfect sightline to the show without the overwhelming loudness and crowds inside the park.

Bedroom at The Polynesian Resort - Disney World — Our Multi-Generational Room included 2 Double Beds, A pull out, Fridge and Microwave

5) The Magicband

Shopping at the Animal Kingdom - Disney World — Shopping inside Disney World was an easy distraction

Staying on site also gives you access to the Magicband that goes with booking at any Disney World Resort. Truly one of Disney’s smartest additions to the park and makes life so simple with customized Disney experience. Your Magicband is everything. From your hotel room key, FastPass+ access, your wallet throughout all the resorts and Disney World. You are able to purchase food, drinks & souvenirs in Disney using the Magicband which made walking around so much easier.

6) FastPass +

The FastPass is a god-send for special needs parenting as it allows you to pre-book 3 rides in advance each day. This can be done via the Disney app, and provides a specific time you are “reserved” to head to the ride. Any opportunity where we can prevent angsty waiting is incredibly powerful in our world.

*FastPass+ bookings can be done 30 Days in advance.

7) Disney Parks Disability Access Service Card (DAS Card)

The DAS Card allows persons with special needs, be they apparent or not, to arrive at a ride and receive a time to come back. So instead of standing in line for an hour, we could leave and come back later, which reduced our wait time in the actual line considerably, and gave us the flexibility to do other things that would contribute to our Disney visit in a positive way. We got ice cream, saw characters, took a bathroom break, shopped and occasionally just sat down for a rest till it was time to go back to the ride.

Grand Entrance & Intro show - Disney World — Just past this entrance to the left is the area you apply for a DAS, to the right is Mickey Mouse

Finding Fairy Godmother just behind the castle - Disney World, survive Disney with special needs — You will find Fairy Godmother just past the castle

8) Take Breaks

Staying so close also allowed us to choose when we were going to take some “breaks”, heading back to the hotel pool to refresh and regroup, providing some peaceful downtime before we headed back to the park. With the Monorail 5-7 minutes to the park, it allowed us the flexibility we needed to manage those moments where we thought we were hitting our limit.

9) Use meal/snack times as distractors

One of the most difficult and often stressful parts of traveling with a special needs child is eating out, with unfamiliar foods and lack of routine, so we opted out of the meal plan to avoid the food lines, choosing instead to rent a car and drive to a nearby Target for familiar and healthy lunch/snacking foods. The fridge in our room allowed for us to start every day with a quiet, calm breakfast and we used food in the park to keep the kids busy while waiting.

10) Noise cancelling headphones

A number of the rides at Disney can be loud and jarring, so we packed a pair of noise cancelling headphones in the event that things got too much. This gave our son a chance to deeply cushion the incredible sensory experiences going on around him.

survive Disney with special needs, Noise-Cancelling Headphones are the perfect solution for Autism at Disney — The headphones worked amazing at places like the Stunt Show at Disney Studios.

11) Have a flexible plan

Getting to the park early and choosing the most popular rides first was our strategy and we were able to enjoy them without ridiculous wait times. We tried to keep the rides balanced to reduce sensory overload, and if we did a closed, fast paced or loud ride, we would follow it with an open and slower ride that would be more relaxing and lower growing excitement levels. There will be moments you need to adapt. Just stay checked in with your kids and see what they can handle.

12) Breathe & Enjoy

The attendants and everyone we encountered at Disney were amazing, with customer experience obviously a priority. This is supposed to be fun for the whole family. So do as best you can to plan ahead, let routine go, let it flow, enjoy the moments and you too can have a Magical Disney vacation.

Family Matters

Smitten – Crushing on your kid

by Jenn & Chris on June 19, 2015

Loving your kids is a given.

They sit etched in your heart with that deep, beautiful love that will never go away.

But I am surprised at times by those moments you realize that you are truly, sincerely falling in love with your kid. Not that parental love but a massive crush. You gaze dreamily at your child as you witness a certain kind of character they are demonstrating. Admiring their virtue and wishing hard that what you see is a little taste of what the future holds, a core value they might hold true for life.

A morning last month started off like most mornings these days. Our lives have been hectic. Near insane in fact with two parents traveling for work, major projects coming to a head. We ran around like mad chickens, prompting getting dressed, pushing our daughter to get moving to brush her hair, reminding the kids of teeth, backpacks, lunches. You know the drill.

Through a serious case of two ships in the night, we both totally glitched on the fact that it was a special field trip day. Completely omitted from our Google calendars/brains/wall book that we had volunteered. We did rock, paper, scissors. We cursed a few times. In the midst of all the crazy, there was our son. Dressed, teeth brushed, hair combed, boots on without any kind of reminders. He sat on his bed looking as pleased as punch. So excited about this field trip and so worried we would be late.

I accepted this sudden change in design of my day, and that I would be the one representing. After all, field trip + public transit + wandering Autism is like my very own version of Fear Factor.

We met our motley crue at the school. One of the members of our group was a sweet, little girl our little man decided was his responsibility to help for the day. My heart skipped a beat as we left the school into the rain. His SNA and I smiled at each other as we watched him pull out his umbrella to shelter both of them on the way to the bus.

My sweet boy and watching over his friend for the day

When we got to the subway, he took her hand. He made sure she stuck with the crowd. He made sure she was taken care of and told her to not to worry, that he had her covered.

Throughout the day, I witnessed him checking in with her to see if she needed help, holding her hand, making me want to weep from his sweet heart.

I saw a kindness and a caring that surprised even me. We see him feel joy all the time when he does good things for others. Whether its reading to the little kids in daycare, or happiness when he has a special moment for a friend, he is a good kid.

This was different. Without encouragement he put effort into making his friend secure and safe. You could tell caring for kids makes his heart zing and that.. makes mine.

My happiness for the day couldn’t change after that.

In the simplest of ways, he brought back my faith in humanity. In the quietest of ways, he made my heart swell for him.

When one person simply cares about the welfare of another.

For that, I am totally smitten.

Falling in love with this smile over and over again

Real Life

I need to tell you something…

by Jenn & Chris on February 14, 2015

Dear Son,

I need to tell you something.

I need to tell you that there is a part of me that has been living behind a false smile for a few months now.

I need to tell you how much a simple school field trip ripped open my heart and has me completely unsettled. It created a surprisingly deep fear of what to expect in the years to come for you. The teacher who told me that we need to toughen you up? I get it. I understand where she’s coming from. She wants you to experience tough moments while still in such a kind-hearted school because these kids know you, they accept you and it will be so much easier to go there for shelter when you start experiencing the mean.

The teacher who suggested we might want to be open to HSP classes? I get that too. (you wouldn’t have known it when I burst into tears during the parent-teacher interview). Resources in our area are near stripped clean. Like a hyena on a zebra, there really is nothing left. The only way for you to continue excelling is with that amazing one on one help. Without it, you will not be able to stay focused enough to complete the task in the classroom and required to access the special needs room. I need to tell you we don’t want this to happen but recognize this might be the only way to keep you propelling forward.

I need to tell you I see warning signs everywhere. Peripherally. The strange stares as you hum or suddenly fling yourself on the ground, the frustration of friends as you get too close for comfort, the giggles of kids who don’t know you/don’t understand as they form a quick opinion of who you are.

I need to tell you that I am ready to go after anyone who might treat you differently or wrongly. I am like Ralphie in the Christmas Story creating scenarios of getting back at the bullies when it just…becomes…too….much.

I need to tell you I see your sister confused and angry because there is a slight difference in the way we treat both of you and I feel awful about that.

I need to tell you we are organizing a special session with our speech therapist to come and try to explain what Autism is to our friends.

But first…I need to tell you you have Autism.

I am dreading it.

I would like to say “Why fix what’s not broken” but I can’t. Things are different, they are changing and I would rather work with our friends to have their kids on our side than be the jerks who join in on the teasing or even eye rolls.

I would like to say how much I love that your heart is pure gold. Your kindness and generosity of spirit so beautifully innocent. You love unconditionally because to you, there is no other version of love. You take such pleasure in the simplest of gestures, the sweetness of a moment, you help remind me so often of truly focusing on what’s important cause to you, its just a beautiful sunset or intense excitement over the reason round of Super Mario.

I would like to say I got your back. And so do many others.

That we will get through these years and it might be tough. We don’t know the answers but we will always persevere cause as a family, we truly are a team.

With deepest love,

Mom