I suppose an introduction is due. My name is Syndi Knowlton. I am the mother of 3 special angels.: Emily (18), Thomas (14) and Isabelle (9). All three have special needs. I had countless people give me a snarled look asking why anyone would be so dumb to keep having special kids. My answer is complex: Isabelle was diagnosed in May of 2007. I will never forget my cell phone ringing at 10:14 am as I am merging on to the highway. The dreaded words: Rett Syndrome. I pulled over and sobbed for a very long time before I could pick up my phone. I wanted to check; Did I really just get that call? Sadly it was all true. My day only got worse. My son had an appointment at 2 PM *THAT DAY* where we finally were confirmed that my son has Autism. It wasn't until 2012 that Emily was diagnosed. So if you followed my children above, our diagnosis's started from the youngest to the oldest. Besides, how dare anyone question why I would have my amazing super heroes.
Because the diagnosis's were slow, it left a lot of questions and frustrations trying to get to the diagnosis. I should be grateful that we have the diagnosis's. Many people aren't so fortunate. I would pull a piece of info here, another contact there. It was more exhausting than just coping with the symptoms without a name. I found a group on Yahoo called Utah Kids. My understanding this was the brainchild of my now friend Diana Sagers. It was in coordination with the Utah Parent Center. As technology and social media evolved, I chose to open a group on Facebook in 2012 simply called Utah Kids. It was a place for other special needs moms to talk about our children without judgement, find doctors who were helpful, and often supplies that were needed in a pinch. Fast forward to today. We now have 1.040 parents in our group!
Utah Kids Foundation is being created for several reasons. First, to continue to be a place that is safe to discuss things that our "normal friends" cannot understand. Second, we now have bracelets to identify each other in public. I have a love/hate with social media. I love that it reaches so many but I hate that it fosters an introvert lifestyle. If I see a mom at a local hospital with our bracelet on, I am instantly introducing myself and offering a listening ear. Perhaps we meet up for dinner in the cafeteria but without a way to know one another, we would never get together. The next step in our mission is to fully launch Mommy Care Packages. These will be ordered on our website. Personally, if my child lands in the hospital I recall they need their comfort items, warm socks and movies. I always forget that I might want a shower, need a notebook, or a desperately needed Diet Coke when leaving the room is not an option. Our Mommy Care Packages will not only be delivered, but it gives the parents a chance to interact with another parent and not just the medical staff. Lastly we are working to create a catch all database of all things special needs. A calendar of events in the community that are special needs friendly. Information sheets on all procedures. A database of all non profits in the community.
No parent should be alone in our journey. There is always someone to listen. We've got your back.
I am immensely grateful for the support in launching this dream. I couldn't do it without many supportive community members. Utah Kids is built on love, sweat and tears. Come rejoice with us, and cry when things go terribly wrong. It's usually a ton of laughs in the reality of our amazing new journey. To find out more about us, visit us at www.utahkidsfoundation.com
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