My name is Karen Cox and I live in Paradise, Utah. My husband and I met 31 years ago while we were attending Utah State University. We are the proud parents of 4 children, and also have the most amazing 6 grandchildren.
Our son Ben is 26 and has Opitz C Syndrome and Asperger Syndrome. Having a child with a rare syndrome has taught us many things, advocacy, faith, patience, and lots and lots of unconditional love. Ben’s symptoms have calmed down somewhat with age but he still struggles with being deaf/blind, being a room walker, low stamina, more ear infections and surgeries than I can count, headaches, and every bug that even thinks about going through his day program.
I have served in Cache Valley and in the state as a parent representative on various advisory committee’s and boards. I have co-taught at Utah State University as a parent representative in special education classes, and worked as a parent consult for USU. My goal is to help people who work with and future teachers of children with special needs to take care, not only with the child but also the family. To listen and learn from the families, to help them realize the family is the greatest advocate and teacher regarding their child. I also want to help families who have children with special needs get the services and attention they need. When Ben was about 3 I decided if I could help just one family learn something the easy way, instead of how we learned it the hard way, it would be a very good thing.
In my spare time I work with the Early Intervention Program, listen to lots of music, read lots of books, spoil my family, and follow bicycle riders on crazy long bike rides.
My favorite quote is from my physical therapist, “Never Give In!”
Our son Ben is 26 and has Opitz C Syndrome and Asperger Syndrome. Having a child with a rare syndrome has taught us many things, advocacy, faith, patience, and lots and lots of unconditional love. Ben’s symptoms have calmed down somewhat with age but he still struggles with being deaf/blind, being a room walker, low stamina, more ear infections and surgeries than I can count, headaches, and every bug that even thinks about going through his day program.
I have served in Cache Valley and in the state as a parent representative on various advisory committee’s and boards. I have co-taught at Utah State University as a parent representative in special education classes, and worked as a parent consult for USU. My goal is to help people who work with and future teachers of children with special needs to take care, not only with the child but also the family. To listen and learn from the families, to help them realize the family is the greatest advocate and teacher regarding their child. I also want to help families who have children with special needs get the services and attention they need. When Ben was about 3 I decided if I could help just one family learn something the easy way, instead of how we learned it the hard way, it would be a very good thing.
In my spare time I work with the Early Intervention Program, listen to lots of music, read lots of books, spoil my family, and follow bicycle riders on crazy long bike rides.
My favorite quote is from my physical therapist, “Never Give In!”
I think the hardest thing I have ever had to do as a parent of a child with special needs is to accept hearing "I don't know" from doctors. With time, I have come to respect that statement. At first, every doctor appointment I wanted them to fix him, to make him better, to take away his pain and ours. At the time of Ben's birth, there were only 14 other children in the world diagnosed with Opitz C Syndrome, and frankly, the doctors just really did not know what to do with him. So we learned together. We read everything we could find, and simply did the best we could with the unknown. We are still trying to do our best, and doctors still tell us they don't know. He has a great team in place. I trust them. I question them. We negotiate. My heart still breaks at all the blood draws, the illnesses, the hospitalizations and repeated surgeries, even his headaches and all of his other challenges. I keep thinking at least one thing should be easy for him and decided that is his capacity to love.
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Ten Little Known Facts about Me:
1) I am a farmer's daughter and still love to play in the dirt. It is my therapy!
2) I have been downhill out of control on a motorcycle, a 3 wheeler, and in a van. The van definitely hurt the worst!
3) I love to ride in my car with the windows all down, blasting my music! It is a perk of having a child who is legally deaf and loves music as much as I do.
4) I am addicted to Grey's Anatomy. Netflix definitely feeds my addiction!
5) I love Hershey's chocolate mint kisses! I feel strongly they should make them year round and not only at Christmas.
6) I also hide chocolate all over my house. It's kind of fun when I find some. The challenge is to hide it good enough that no one else finds it!
7) I have to make deals with my granddaughters to get me to exercise. (If I exercise for the next 9 days, I get cookies!)
8) Ben and I enjoy supporting our family of cyclists. Ben and I follow them in the car with all of the water and food. Ben thinks he is riding too, so it works. We have probably followed them 10,000ish miles.
9) I love to travel!
10) My family thinks I am crazy! I am ok with it. It keeps them on their toes.
We will update later this week with family photos and a little from my husband.
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