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'A life full of adventure': Colorado Springs mom inspires special needs parents

Gazette - 4/24/2023

Apr. 23—Kristy Cook moved with her husband and four children from Florida to Colorado in 2020, seeking better medical care for her son Robbie, 8, who has a rare form of drug-resistant epilepsy that causes daily seizures.

"We decided to move because we were kind of coming to a standstill with his doctors in Florida. They didn't really know where to go next," she said. "Since we've been here, we've seen major increases in his health and just overall well-being."

Moving to Colorado also meant more Medicaid resources, which allowed Cook to be Robbie's full-time caregiver.

"In Florida, they do not have the same Medicaid waivers that we have here in Colorado. So we just didn't have the same resources," she said.

After they settled in Colorado Springs, Make-a-Wish gifted the family an RV so they could accommodate Robbie, who uses a wheelchair, while traveling. The family struggled at first.

"We quickly realized that it was very difficult to plan trips with things that were accessible for him," she said. "So we started an Instagram page just to reach out to full-time RV families and traveling families and ask them questions."

Once they started reaching out, it became clear to Cook that there was a need for more awareness surrounding accessible destinations.

"It wasn't our intention to become influencers or start a business or anything of that nature," she said. "We started geo-tagging accessible locations. People just kind of started to find us and follow along and we started to build a community of other special needs parents."

Now, Cook is helping other special needs parents by showing them it's possible to travel with their children under the account @accessible.adventures, which she started in 2021 to share her family's travels.

Her most viral video, posted on Instagram, has received over 10.3 million views. The video shows Cook's husband carrying Robbie in a park with a Kinderpack.

"My love language is watching my husband never leave behind our disabled son. No hesitation, no complaints, just unconditional love," the video's caption reads.

That video along with dozens of others on Cook's page have inspired special needs parents across the world to get outside.

"Now we get messages — I mean hundreds of kids with pictures and stories that they're getting outside and they get to hike too and they got to see a waterfall," she said. "It's just like this little butterfly effect."

The positive response motivated Cook to start a business this year, where she now reviews businesses and points out where they could be more accessible.

"We started getting reached out to by companies that wanted help and feedback. They wanted us to come visit and let them know, 'What are we doing right? What are we doing wrong?'" she said.

Since Cook has a newborn, though, she's been sticking to local businesses. Recently, Cook partnered with the Denver Children's Museum at Marsico Campus to make an accessibility guide. Her review, which was posted in a video that has now garnered nearly 30,000 views on Instagram, showed Cook surprised — and delighted — by the inclusive design of the museum.

"They put so much effort into making ADA-compliant tables for these kids to play at and having adaptive paint brushes and tools and just it's amazing, and I feel like no one knows about it," she said. "I think that there is a gap in companies that are trying to see that we need this accessibility and inclusion and then not knowing how to get it out there to the world. So that's kind of where we fall."

The family also just recently went out to eat for the first time in years, Cook said, after visiting Brewability, a brewery and pizzeria that offers inclusive resources and employs adults with disabilities.

"We haven't been out to eat in years, because he's medically complex and he's in a chair and he gets frustrated sitting still," she said. "It just truly felt like home. Like we were welcome and it's just like a breath of fresh air and it's so hard to explain to someone that doesn't get it."

But it's been a hard journey to get to where they are now, Cook said.

When Robbie was diagnosed as a baby, Cook felt lost, especially when seeing posts of parents in similar situations online.

"We just kept chasing after about like miracle drug or that miracle cure or miracle diet, because that's what you would see in these groups," she said. "It was either I did this one thing and the world (changed) and my child was suddenly better, or there were parents that that didn't happen for and they just seemed defeated and lost."

For the first few years of Robbie's life, those two options were all Cook could see.

"It was either we were going to get control of this and we were going to help him and fix this for him," she said, "or our life as we knew it just would never be the same."

But, as the years went by, she began to realize that while Robbie may need some extra help, he could still live a beautiful life.

"The first part of transitioning my mindset was realizing that even if my child wasn't healed, even if he ended up having extensive needs or still had seizures or had a wheelchair, he could still have these types of adventures," she said.

That helped her realize the importance of balance: giving Robbie enjoyable experiences, even if that meant taking a break from lessons or therapy for a day.

"I had to realize that his ability level mattered so much less than his level of comfort, his joy, because I think that for the first few years as a parent, I got so wrapped up in therapy and goals and comparison, that it's a thief of joy," she said.

"They still need those same experiences that typical children do."

From there, Cook has used their journey to help others who are grappling with similar concerns.

"We're trying to bridge that gap and kind of be the voice that we needed in the beginning of our journey," she said.

And for Robbie, being outside has its benefits.

"We actually even find that when we travel and we're outside all day and we're hiking in these different places, that he has less seizures," Cook said. "There's no other reason for it, I think, other than he's just out in nature, and it's so calming."

It's also much easier for him to be outside in Colorado, Cook said.

"We definitely hike around the Springs and find accessible locations that we take him to. We love being outside. That was a struggle for him in Florida because of the heat and the humidity. He can't tolerate it very well," she said.

Looking to the future, Cook hopes to see more accessible changes, but is optimistic with the direction things are going.

"It's starting to happen," she said. "Every time we come across something like that, it's just like, 'Wow, they care.' Like, my son's life matters. My experience matters and it's just so heartwarming, like it brings me to tears."

Since getting the camper, the family has traveled to 27 national parks, with more to come.

"We try to show people that even though their child might have a disability, they may never be typical. They may have to use a wheelchair like our son has almost daily seizures. But he still has a really beautiful life. It's worth living. He has a life full of adventure," Cook said.

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