Omaha + 3 months:  “I hate it here! WHY did we move here?! This is the worst place ever.”

Omaha + 3 years: “I’m never leaving! I love it here.”

Denver + 1 month: “Why do people like it here so much?! Ugh. I can’t wait to leave. I miss Omaha.”

Denver + 3 months: “It’s no wonder so many people are moving here! It’s awesome. I can’t believe we have to leave.”

Suffice it to say… Adam has always had to deal with a lot of complaining 😉   Denver has grown on me. Colorado is unbelievable and we are so lucky to get the opportunity to experience another city for a year. While I still don’t love Denver, I really like it. It’s a big city with big city problems, but also big city perks.

Our family lives in a part of Denver called Stapleton. The development is on the site of the decommissioned Stapleton International Airport. We are lucky enough to live just a few miles away from the zoo, aquarium, Children’s Museum, Museum of Nature & Science, and downtown. The kids attend an amazing school. The parks and walking trails are numerous. Denver is just a half hour from the mountains and we are spending Christmas in Vail! And the weather? Oh, the weather. It’s fantastic. I’ve seen it cloudy a handful of days. In fact, I often joke that I’d pay good money for some rain just for an excuse to sit inside and be lazy!

Living in a city for less than a year is strange. We have one foot in and one foot out. The boys know they won’t be living here much longer and waver between questions of “But will so-and-so (a friend) still be at my school next year?” and “When do we move to Fargo?” Adam and I are building a house and the boys are very excited about their secret playroom and having a backyard.

Denver has so much to offer. Last weekend Claire participated in a photo shoot for Changing the Face of Beauty. Here is their vision statement: “Changing the Face of Beauty empowers people living with disabilities by advocating for inclusive imagery, thus changing perceptions and igniting futures in the media and advertising industries.”

Two weeks ago we had an army of visitors. Krysta, Jordan and Graham visited and we spent time at the zoo, in Golden, CO, and downtown. Paul and Chris also visited for the weekend and helped Peggy babysit Saturday night. Our good friend Chris was in town for a work conference, and was finally able to meet Claire and see the boys. And the Franzens, whose daughter Sophie also rocks an extra chromosome, were in town for the Changing the Face of Beauty fundraiser and fashion show.   (http://bebeautifulbeyourself.org/)  I just received an email that the fundraiser raised over 2 million dollars! Incredible. All of that money will go towards Down syndrome research. Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome).

Living in Colorado has proven to be an incredible experience in the world of special needs. I don’t hide the fact that I’m quite nervous about moving back to North Dakota; but in the past few weeks, I’ve come to realize that if someone has to reform the way things are done, it may as well be me! Here are some of the highlights of special needs “living” in Colorado:

• Medicaid waivers

• The cost of raising children with special needs is incredible. That probably doesn’t shock many of you, but if you saw our hospital bills, I think horror would replace shock. Adam and I survive off a fellowship income that is less than what he made in residency. We would literally not survive without Medicaid.
• “Regular” Medicaid is given to those who need it financially. Then there are waivers. Waivers are hard to qualify for but are so necessary for those of us who have special needs kids. Sam and Claire both qualify for a waiver. If you don’t qualify for a waiver, another option is a “Buy-In for Children with Disabilities.” Based on your monthly income you have a set premium amount per month. (https://www.colorado.gov/hcpf/medicaid-buy-program-children-disabilities)

• ECSE preschools with typical peer models

• Unfortunately, Fargo/WF do not have special education classrooms that include “typical” peer models. Both Omaha and Denver do, and I just assumed this was the norm. Peer models are so incredibly beneficial. They experience the same preschool education they would be getting elsewhere, and they act as role models to their peers who have special needs. Research has shown that “neurotypical” boys gain more compassion and girls gain more confidence when in an inclusive environment.  I will hopefully be discussing options with the public schools in Fargo/WF soon.

• Children’s Hospital daycare

• Free for those on Medicaid or have a diagnosis. So many families are forced to have one parent stay home after a life-altering diagnosis for their child (raises hand). Typical daycare centers can’t take care of a child on a feeding tube, oxygen, trach, etc. This daycare is staffed by knowledgeable employees and pediatric specialists including RNs, OTs, PTs, SLPs, Care Coordinator, Educators and Paraprofessionals. They also have handicap-accessible playground equipment (which I believe should be everywhere, but I digress).

• CNA program

• This program allows parents to become certified as a CNA to care for their children and receive pay. I just got evaluated for this and between Sam and Claire, I am doing the type of work a CNA would do for 7.5 hours per day. If I become a certified CNA, I can be hired by a home healthcare company and paid. Colorado is the only state in the country with this type of program.
• At first, I was a little weirded out that someone would pay me to do stuff that I was already doing. But, after discussing with the home healthcare company, they pointed out that I am doing things most other families don’t have to worry about.

• Mileage reimbursement for medicaid appointments

• HIBI Program
  • Health Insurance Buy-In (HIBI) is a premium assistance program for Health First Colorado (Colorado’s Medicaid Program) members. It sends monthly payments to you for all or a portion of the cost of your commercial health insurance premiums, and in some cases also reimburses you for deductibles, co-insurance, and co-payments.

• Short wait list times for waivers compared to other states

• Services for adults 18-21

• Headquarters of Global Down Syndrome

• Sie Center for Down Syndrome

• Claire visited the Sie Center in late September and we were blown away by the level of care. We met with world-renowned physical therapist Pat Winders and their Medical Director/ pediatrician, Francis Hickey. Dr. Hickey is incredible—it was refreshing talking to a pediatrician who knew everything about Down syndrome. He knew all of the information about supplements, alternative therapies, etc. His son has Down syndrome and he has spent years researching and consulting with different specialists.
• The Sie Center for Down Syndrome provides the highest quality of comprehensive care to children with Down syndrome by coordinating medical care, along with therapies including speech, physical and occupational.

• Linda Crnic Institute
  • It is the first global institute to encompass basic research, clinical research and clinical care specifically for people with Down syndrome. The mission of the institute is to eradicate the medical and cognitive ill effects associated with Down syndrome. Significantly improving the lives of people with Down syndrome is a major focus.

• Rise School (preschool)
  • The purpose of the Rise School of Denver is to provide the highest quality early childhood education for all children, including children with developmental disabilities.
  • It’s incredibly expensive, but if we had the money I would without a doubt send Claire to the Rise School.

• Colorado Initiative for Inclusive Higher Education (4 colleges/universities who have opened their doors to people with ID)
  • This makes me smile. NDSU will have a mama bear knocking on their doors in a few years unless they start a program sooner!

• The Inclusive Higher Education Pilot Program which opened up college doors for people with intellectual disabilities in Colorado!