Welcome to our Blog

Entry #1:

March 25, 2023

The Beginning of a Dream

    I am sure there are many curious to know, who and what is Dragonfly Ranch. Dragonfly Ranch is a nonprofit 501(c)(3) with the vision of working to establish a place where young adults who age out of the school system, who are not yet ready to enter the work force without assistance, can continue working on their skills. The continuation of establishing stronger life skills, independency, following directions, communication, socialization, fine and gross motor skills is the focal point for Dragonfly Ranch.

    I am the co-founder, Kristin, the mother of two young adults with a disability known as Fragile X. This disability has caused cognitive delays, receptive delays, multiple sensory issues, mild to moderate aggression, and more. As each of my sons entered the school system, it became abundantly clear the negative stigma placed upon my children. Advocating for my children was quite overwhelming and constant, but I was determined to provide them the best education that met their needs, not necessarily total inclusion. The amount of meetings that I had to attend was outrageous just to ensure that they received the proper education as required by law.

    As Tyler and Nic continued to age, I then began to realize that my biggest challenge was going to be when they aged out of the school system. The entire process is extremely confusing and complex. At this point, I came up with a vision to begin a nonprofit for young adults who have similar challenges to the ones my boys face.

    As I began working on this idea and establishing a business plan, I discussed it with my very close friend, Ali. We quickly became so close in a way that we considered each other family. Ali also had a daughter with disabilities, which is just one of the many reasons our bond became so strong. Ali quickly joined me and became a co-founder. Her interest, passion and excitement in making this dream a reality for so many was just as strong as mine.

    Together Ali and I worked diligently on preparing the business plan and filing all necessary documents to become a nonprofit. From there we partnered with Humanitarian Social Innovations (HSI) as our fiscal sponsor for our 501(c)(3) and our ideas were ready to flourish.

    Unexpectedly and horrifically, Ali was diagnosed with Stage 4 colon rectal cancer. Although at an emotionally, mentally, and physically daunting time, she did not stop working on making this dream come to fruition. We continued to move forward with our plans of the future. Ali made me promise her verbally and in a written notebook that I would turn this dream into a reality once she was no longer here with me and her family.

    After Ali passed away her daughter, Shauna, immediately jumped on board to fill her mothers shoes. Shauna has now taken on the role of the caregiver for her disabled adult sister, Karli. She is now my partner and together we are making great strides in bringing this to fruition.

    In May 2022, Shauna and I began working with Karli, Tyler and Nic making dog treats to begin raising funds for Dragonfly Ranch. We found that this was a great learning experience for them. It involves following directions, staying focused and on task, gathering ingredients, measuring ingredients, mixing, rolling and cutting the treats, baking, dehydrating, bagging and labeling.

    May 2022 was the kick off of our fundraising. It has been a huge learning curve for Shauna and I. Developing ideas for how to make it work best for each individual and capitalizing on strengths is important for the progression of these individuals. We are constantly brainstorming to add new skills to allow these individuals to become productive, accepted members of our society.

Welcome to our Blog

Entry #2:

September 4, 2023

The Journey

In the World of Disabilities

My life is definitely a lot different than most parents of a 25 year old and a 22 year old. I may never experience the “empty nest” syndrome and be able to come and go as I please since my two adult boys require constant supervision.

Life can be emotionally, physically and mentally draining. If you had told me I would be where I was today 25 years ago, I would tell you to go pound sand (chuckle).

Being where I am today, I would not change a thing. My boys have taught me so much more about life than I ever would have learned otherwise. Examples include how to have more empathy, how to not be so judgmental of others and so much more.

The struggles have been real, noticing that something wasn’t quite “right“ when my first son was born. I was told I am just a first time mom and that there is nothing wrong, I was asked if I was sure his projectile vomiting wasn’t just spit up. I had people say sometimes boys are slower in meeting milestones.

After two years of being told he will be fine, I requested a referral to see a pediatric specialist. There he was tested for autism and was initially diagnosed with PDD-NOS. While taking him to the specialist, I was pregnant with my second child. Approximately 6 months after my second son was born, the doctor noticed some potential issues with him as well and talked us into having bloodwork done. The doctor explained what she was looking for in the bloodwork, so once I got home I immediately began researching. After extensive research, I was quite certain they were going to tell me that one, if not both of my boys, had Fragile X.

Fragile X is a genetic mutation that can cause mild to severe intellectual and developmental disabilities. Most of the symptoms present as those affected with autism. The information available only 25 years ago was minimal as the genetic mutation had only been found in 1969. Everything available talked about those that were greatly affected.

We found out during my oldest sons birthday. We were waiting for family to arrive to have cake to celebrate. Approximately ten minutes before everyone was supposed to arrive, we received a call from the doctor explaining that the lab work had come back and she wanted to meet with us first thing the next morning. I specifically asked the doctor “Do they have Fragile X?”. With some hesitation and since I asked a direct question, she stated yes, they have Fragile X. My mind was racing and I had to compose myself so that we could celebrate his birthday before telling the family what was happening.

The next morning, we went to see the doctor to learn about the results and what this means. At that point in time, the only positive words I clung to were that this wouldn’t affect their longevity. Everything else was so overwhelming and scary. What exactly is Fragile X, what can I do to help them, trying to figure out the maze of the system for early intervention, what services would be available to help my children, what therapies were available, and anything else imaginable that one could think of once hearing this information.

Then comes time for my oldest to enter kindergarten. At that time, I did not realize reaching school-age was going to be a long, hard, tiring, and exhausting challenge.

The acronym IEP (Individualized Education Plan) was a foreign word to me. It required extensive research to determine what my child’s rights are to a proper inclusive education within their school district. Little did I know at the time that was just the beginning of the battle. The IEP requires the collaboration of educators and myself as my sons advocate. I left many meetings feeling defeated. Fortunately I was given the name of a wonderful woman that advocated for parents. After meeting with her, she quickly agreed to advocate for us and attend all meetings. At that point, I felt like I was being heard and we began to make slow progress to make the IEP work for my son and add additional supports as required by law. This is a story for another blog and I will go into more detail to try to assist other parents/guardians in a similar situation.

The battle continued to provide them each with different needs for proper education with both of them having attending the public school within our district. As my eldest was nearing “aging out of the school system at 21 years old”, I had no idea that an IEP paled in comparison to what was going to happen when they aged out of the school system.

The services available after aging out of the school system are even more confusing and involves dealing with the government. It requires the parent/guardian to know the rights for their child and where to begin to look for services. The waitlists for everything are long. The waivers are tiresome and require your constant attention. It can be exhausting having to work a full time job to have money to pay your bills and figure out how to get help with your now adult children who require 24/7 supervision.

This is why I decided to look into starting up a non-profit. I wanted to have a safe place for my boys and other adults in the same situation to continue learning life skills, independent skills and communication skills. In addition, I want to educate the public and businesses on how beneficial these adults can be. We all have an opportunity to continue our education after high school, but for those with intellectual/developmental differences, those opportunities are not available.

This is how Dragonfly Ranch went from a thought, to a dream, to a desire, to fruition. We are still only in the beginning of this amazing journey.