Hi, my name is Holly Soper and I would like to start by thanking everyone for participating today and taking time away from your busy schedules, to help support this amazing fundraiser. I know these days, our lives can be chaotic and very busy. So, we appreciate everyone here.
Also, a special thanks goes out to RE/MAX Nexus along with everyone else that helped put on such a wonderful event. Last year, they raise $40,000 at this event. That money goes directly to scholarships for local children to attend the RE/MAX Communication Preschool at Beaumont Children’s in Royal Oak for an entire year. The money raised will fund nearly 13 scholarships. Scholarships for children who struggle to communicate and often have multiple medical issues. Being able to articulate how they are feeling, what they are feeling and being heard and understood means more than anything to them and their families.
This preschool is not your typical school for 3 to 6 years old’s because it only accepts students who have been diagnosed with moderate to severe speech or language impairments. This preschool is amazing because they have a speech and occupational therapists in class to assist the teacher. Also, the teacher, Mrs. Beth, is one of the most kind hearted and patient person you will ever meet. Mrs. Beth loves these children and works so hard with each student to help improve their communication. Mrs. Beth and the specialized therapist at this preschool are amazing and they have all helped my daughter more than I could ever imagine. This is why many parents travel between 30 to 50 minutes to come to this specialize speech school.
This is an incredible school and I would like to share my daughter’s story with you today, just to give you the perspective of some of the children that go to this school. My daughter Everly is 5 years old and has been going to this awesome preschool for the last 18 months. Everly is one of the students who will benefit from the money raised today. So, I just wanted to thank everyone for participating today.
Everly has had a difficult childhood with many heartbreaking moments. The first of which came when Everly 18 months because she was diagnosed with moderate to severe speech delay. At the time, we knew Everly was behind on her speech milestones but everyone was telling us just to be patient because her speech will come along. Nevertheless, we didn’t want to delay Everly’s care, so we enrolled her in group speech therapy classes when she was 18 months. After a few months of group speech therapy, we noticed that other students were progressing faster than Everly. So, we enrolled her in private speech therapy to help her make more progress with her speech.
At 2 years old, Everly was going to group speech therapy once a week in addition to private speech therapy twice a week. With Everly going to speech 3x a week, we began to start seeing her make some progress with her speech. However, Everly’s speech therapist kept telling us that she has low muscle tone in her mouth which was contributing to her speech difficulties. Her speech therapist explained to us that this was making it difficult for her to fully articulating the words she was trying to pronounce. Around that same time, we realized that Everly was walking a little unusual. So, we decided to take her to get evaluated by the physical medicine doctor to help explain Everly’s low muscle tone and the way she walked.
This is when we had our next heartbreaking moment in Everly’s childhood because we were expecting the physical medicine doctor to tell us nothing is wrong with her. However, to our shock, the physical medicine doctor pre-diagnosed her with cerebral palsy but ordered an MRI of her brain to see if she had any brain damage.
When we got the results back from the MRI, it did not show any noticeable brain damage, which we were happy to hear. However, the physical medicine doctor wanted to get a more detailed MRI of Everly’s brain and spine because he thought that there could be a syrinx in Everly’s spinal cord, which could be contributing to Everly’s low muscle tone symptoms. Unfortunately, this was in March 2020 and that is when everything got shutdown because of covid. This was a very stressful time for us because not only were we dealing with the unfolding pandemic, we were also patiently waiting for the hospital to schedule her second MRI which took an extra two months to get the MRI scheduled.
After a very long two months, we were finally able to schedule Everly’s second MRI. That MRI revealed that Everly had Chiari malformation and syringomyelia. The neurosurgeon recommended decompression brain surgery to help relieve some pressure in Everly’s brain because it could help improve her symptoms of low muscle tone (in her mouth and body) in addition to potentially preventing further neurological damage. The surgery was a success, but the recovery was tough. Everly had to spend 2 days in the ICU and another 4 days in the hospital.
Everly’s speech did improve shortly after surgery, but we noticed that she was still having difficulties speaking. That is when her speech therapist diagnosed her with apraxia of speech, which is when the brain struggles to develop plans for speech movement. Everly can hear the difference between words and thinks she is pronouncing the words correctly when she tries to say them. However, the words do not always come out right because Everly’s brain has difficulty coordinating the proper muscle movements to say different words. It was heartbreaking to learn that Everly had apraxia of speech because that is when I realized that this will be a life long struggle for her. There is no cure for apraxia of speech, the only treatment available for this is intensive speech therapy.
Around that time, I heard about this special speech preschool in Royal Oak that came highly recommend from two high school friends, Jacob Thompson and Meg Simns. Jacob Thompson knew about the preschool because he is part of Remax First and has done charitable events for the preschool before. Meg Simns had taken her son to the preschool and had nothing but positive experience with everyone involved with the preschool. After that, we got Everly evaluated to see if she would be a good student for the school and we were very excited when she got accepted. When Everly started at the preschool, her vocabulary included around 150 words – compared to a typical 3 year old that should be using around 250 to 500 words.
Everly has made amazing progress since starting at this school and loves seeing her new friends every school day. Everly has been going to this preschool for about 18 months and is now commonly using 5 to 6 word sentences. Everly’s pronunciation has also improved and she talks more clearly now. Everly has also found new ways to explain to us what she is trying to say instead of just repeating the same word over and over if we are having trouble understanding her.
Everly has a very busy schedule for a 5 year old, she attends this preschool 2 days a week in addition to attending kindergarten on the other 3 days a week and also private speech therapy twice a week. After Everly was diagnose with apraxia of speech, we purchased an AAC communication device which is an iPad that is customize to help Everly communicate. So, instead of other kids only having to worry about speaking verbally, Everly also has to learn how to navigate her AAC device in addition to trying to speak verbally.
There are a lot of heart-breaking moments that come along with having a child with a speech disability. Knowing that Everly doesn’t have a normal childhood like the other kids who could be off on play dates or at the park. Instead, Everly is busy going from one therapy session to the next or at other doctor appointment to get another evaluation. Another heart-breaking moment is when Everly gets really upset and says while crying “Why you no understand me”, which just breaks my heart.
Hearing other children her age being able to speak in full sentences while Everly struggles to pronounce certain words is very tough as a parent. The worst part is knowing that Everly knows that she is different and not like other children. I also worry about that her speech will never get to where it needs to be and she will have to continue to go to speech therapy or use her communication device as an adult. Then, I worry about, how will this affect her self-esteem or impact her ability to have a successful life and if this could hold her back from getting a powerful position at a great business. Also, I worry about other children and adults treating Everly different because of her speech disability because this is not her fault, and that just breaks my heart.
Everly is such a strong, intelligent, and determined little-fighter who is a force to be reckon with. She loves to learn, to joke, and do gymnastics. And boy does she know what she wants and won’t ever back down. I hope that she will always have these qualities as an adult.
Everly has taught us so much. One, being different is an amazing thing, which has taken us on a different journey than most. She has taught us to always be kind, understanding, and patient with others. She has taught us to be appreciative of the little things, like when she says “love you ma”. She has taught us to be tough, fight for what is right and what we believe in for ourselves and others who aren’t able to do it for themselves.
And one of the most important is acceptance. Accepting the things that are out of our control. Accepting others for who they are and try to learn from their struggles instead of judging. And to never give up and always fight for what you want. I also hope that one day Everly will realize how far she has come and how much she has accomplished and how much hard work she has done.
And with that, I leave you with this. “Helping one person may not change the world, but it could change the world for one person.”
You have no idea how much everyone here helped with changing the life of all the children that go to this preschool. So, thank you.