Education | Lessons from my daughter

Tonight, I am doing something new! Please take a minute to meet Matt who was kind enough to invite me to join Yellowbrick.me as a collaborator.

Lessons from everyone

Prior to getting my masters in Special Education, I worked as a job coach for a local non-profit that worked with individuals with special needs. During this time I worked both “in house” as well as at various group homes and job sites through-out the community. During my few years at this job, I met and interacted, and learned from the most amazing people.

The individuals I worked with had varying disabilities and varying levels development and communication skills. Working at job sites, busy insurance companies lunch rooms or at local grocery stores, I was always amazed and awed at my friends work ethics, at their willingness to help co-workers and customers. I saw social skills, as well as pride in their work that personally is lacking in many people.

When I worked “in-house” there was one individual that I worked one-on-one with. This one friend had Lesch–Nyhan syndrome (LNS). Along with cognitive disabilities, being non-verbal, LNS has a distinct symptom which includes self-mutilation. When agitated my friend would try to harm himself. He was missing numerous teeth as well as fingers. This is a very difficult disease.

However, what struck me most was my friends smile and his laugh. He loved “communicating” with others and he and I could be silly for hours. Some times when he became agitated I would calm him, he would nestle his head in my shoulder and I would hold him so he could not harm himself. We would stay that way until he was calm and then the smile would return.

I learned so much from him as well as the others I worked with. These friends showed such grace in the face of some major adversity. They put their all into everything they did, regardless of what it was they were doing. For the most part they were ready with a smile, they cared it you seemed upset and they really wanted to communicate. During my time working with these friends, I learned that life is meant to be lived to the fullest, that people should strive to help each other and try to comfort one-another. I learned, put your all into whatever you do.

I have not worked at this job for many years. Yet sometime I will see some of my old friends as I stroll through town with my family. They all remember me and I remember them. They now know my kids and we stop and say a quick hello. I have lived in numerous places and worked in even more and these friends are some of the best I have ever met.

The author:

Matt Connell, EdD., MBA is a Co-founder and CEO of www.Yellowbrick.me the online educational community for parents. His undergraduate education focused on the study of sustainable agriculture and energy as well as business. He taught special education to at risk students in the Hartford, CT public school system. His doctoral work was on group emotional intelligence and building teams. He has had the great fortune of traveling extensively; both domestically and internationally. He has had the even better fortune of marrying his amazing wife and having two amazing kids.

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Emily has a her own page in the family stories , you can find it here: Emily

Find more about about Cri du Chat syndrome at 5p- Society

Find my first post featured on Yellowbrick.me

October 1999

Emily was just over 15 months old when we finally received her diagnosis.

Our daughter has Cri du Chat syndrome

We learned about Emily’s diagnosis a week before meeting with the genetic team.

Back in 1999, our internet was painfully slow and there wasn’t much information available. What we managed to find was depressing and seemed outdated.

I remember sitting in comfy couches in the genetic counselor’s office. Emily in her car seat on the floor, she was facing us as we were listening to what our life was going to be.

The genetic student sitting across from us looked our age or maybe even younger than us. She regurgitated information she was reading in the giant book of everything a doctor needs to know.

Over the years I’ve developed a strong “disliked” of that book.

Your daughter will never walk, talk, recognize you, understand you or show emotions. She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world.

I remember telling them that Emily knew us and recognized our voices. When her dad or I entered a room and talked to her, she was looking for us. Her head, the only part of her body she could control, would move slightly as she looked for us. She didn’t do that for strangers.

The answer from the genetic counselor was harsh.

You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.

It wasn’t my imagination!

She knew us and she loved us, in her own way!

Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us!

If she could do that, what else would she be able to do?

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

We didn’t plan to lose a small piece of the short arm (p) of our baby’s 5th chromosome.
We never thought that she would be 1 of 50,000 born with Cri du Chat syndrome.
We didn’t imagine that we would be the ones teaching the medical professionals around us about Cri du Chat Syndrome.

Jonathan and I tackled this journey with outdated information and without a support system. We loved our daughter and we were going to give her the best life we could! We took a day off from work every single time we needed to see a specialist and we saw many. We had 1 hour of Occupational Therapy and 1 hour of Physiotherapy per month. We lived far away from our family and had no relief available. We were Emily’s and each other’s only support system.

We were and still are Emily’s biggest fans!

This was the beginning of our Journey navigating through our new Cri du Chat syndrome reality…