The Center for Persons with Disabilities at Utah State University
 

CPD Legacy Story: Jordan Snell

September 4, 2012 by cpehrson

This CPD Legacy Story was written by Jordan Snell.  Jordan attended the Up to 3 Early Intervention program as a young child, and shares how his life was changed through the people he met there.

I was born in May of 1993.  My birth was not your normal birth, as there were some complications. I was born as a blue baby. I was quickly revived, and although I recovered, it was not a perfect recovery.  Due to that incident, I will live the rest of my life with a disability called cerebral palsy.

Small boy in a child size jeep that is hand-powered

Jordon as a young boy in his first hand-powered jeep.

About two months after my birth, I was enrolled in the Up to 3 Early Intervention program at the CPD.  My (occupational) therapist was Amy Henningsen.  It is thanks to the Up to 3 program that I am able to do many of the things that I do today.  It would make life easier if  the story ended there, but it doesn’t.

You see, my experiences with the Up to 3 Program went long beyond the age of three.  In fact my experiences with the Up to 3 program still have not ended.

About two years after I started going to Up to 3, my family’s way of life was forever changed when my dad was diagnosed with a cancerous brain tumor.  Six months later, my mom had a brain cyst that to this day affects her short-term memory.  If you can imagine having  three children, plus a 2-year-old with special needs, a husband who was terminally ill, and not be able to remember what happened 15 minutes ago– this was the situation my mother found herself in.

When my dad called and told my aunt what had happened, she was there immediately.  My aunt is an amazing woman. Soon she was flying from Mesa, Arizona to Logan, Utah about weekly, splitting  her time between her family and mine  and making sure our needs were taken care of.  It quickly became evident that this was all too much to put on my mom’s plate at this time.  My aunt, seeking to help my family, decided to take me home to Mesa with her.  While this did take a load off my parents, it also eliminated my parent’s ability to watch me grow. After much thought and prayer, my family decided that I needed to be in Logan where I could see my parents regularly.  The first place I stayed, the family ended up moving to Texas.  After much more praying and thinking, my family asked Amy (my OT from Up to 3) if she and her husband would be so kind as to take me in and allow me to live with them.  After talking it over with her husband, Amy said yes. Over the next four or five years I spent the weeknights at Amy’s house and weekends at home with my family.  Amy and her husband took it upon themselves to love and care for me as if I was their own child.

Young man standing unsing an electric sander.

Jordan as a young adult using an electric sander.

 

Over the years, the therapy I received as an infant in the Up to 3 program never really ended. Instead, Amy helped me to adapt to my surroundings.  I assure you that, without the help of the Up to 3 program, I would not be a 19-year-old ham radio operator, private computer consultant, and a soon-to-be missionary, let alone drive a car and ride a bike.

The Up to 3 program truly changed my life. If there is any question in your mind about if you should enroll your child in this program, do it. I promise you won’t regret it.

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CPD Legacy Story: Deborah Blanchard

April 11, 2012 by cpehrson

This CPD Legacy Story was written by Deborah Blanchard, a participant in the Interdisciplinary Disability Awareness and Service Learning (IDASL) classroom for the 2011-2012 year.

Head shot of Debbie Blanchard 

My name is Deborah Blanchard and I have participated in the IDASL class this year. I am getting my Bachelors degree in Communicative Disorders and hope to get into graduate school to be an Speech Language Pathologist. I hope to work in an early intervention program or in a school district.

 

 

I have been able to learn so many things in the weekly IDASL seminars and also at the different sites where we do service learning hours. I was also fortunate to be involved in a Participatory Action Research (PAR) project that was focused on Traumatic Brain Injury and what affects it can have on people in their daily lives. 

I decided to take this class because in speech therapy you have to work with people that have a wide variety of disabilities and I wanted to be familiar with the different kinds of disabilities and understand a larger scope of what disabilities affect.  I have gained new perspectives on many issues,  such as accessibility and legislation that affects those with disability issues. I have felt more comfortable in approaching people with disabilities on a daily basis because my perspective has changed and I see the person first.

This class has changed how I am going to offer the best services to my future clients. I had never thought beyond the process of speech therapy for clients and did not realize that there would also be a need to use adaptive technology, or that accessibility might be an issue for the many unique people and learning levels that are out there. I have learned about the many different types of adaptive technology that will help in my future profession.

I will also be able to use this information on a personal level in my family as my parents’ age. This is by far the most practical and helpful class that I have ever taken.

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CPD Legacy Story: Laura Oppermann

January 18, 2012 by cpehrson

This CPD Legacy Story is written by Laura Oppermann and is about the support she has received from CPD programs through the years for her son, Christoph.  Laura is the parent partner at Budge Clinic Pediatrics Medical Home, coordinates Medical Home Care with Intermountain Healthcare, and is currently a service coordinator for the CPD’s Autism Spectrum Disorder (ASD) Diagnostic Clinic. 

 

Laura, long blonde hair with wonderful smile, hugging her son, Chris, little boy in overalls

Laura with Chris

Moving to a new place with a young child with severe disabilities and on-going medical needs can be daunting.

We decided to move from Germany to Logan when our son, Christoph, was two and a half.  His health was very fragile.  Surgeries, evaluations, treatments, as well as emergency ambulance rides were part of our routine. Our beautiful boy had significant needs and we needed to connect with physicians and early interventionists immediately upon arrival. We would have a 6-month waiting period for insurance, and I didn’t know how a major pre-existing condition might impact our coverage or ability to qualify. Needless to say, we were nervous.

A family member suggested I call the Center for Persons with Disabilities. I remember connecting with an informed, compassionate woman in the Up to 3 Program on the phone. I was so relieved to find someone who understood and could answer my questions! She let me know that following an evaluation, my son could receive home therapy services through their program. She listened to my concerns about getting insurance and directed me to Health and Human Services to ask about an insurance program I had never heard of before, called Medicaid.

Soon after we arrived in Logan, I met our service coordinator, Carol (Winn), who then introduced me to PT, OT and speech therapists. They came to our home to observe, listen and teach me as we worked to come up with strategies to help my son progress.  They connected us with The Utah School for the Deaf and Blind and we began to receive vision services, and eventually (deafblind) intervenor services as well.

Everyone was patient with us during multiple hospitalizations and made sure services were as continuous as possible. Preschool came up right away, and Chris came to the CPD to attend the transition classroom for a couple of months. This was extremely helpful, as, in my eyes, he was too young, small, and fragile to leave home and I was terrified to put him on a bus for an hour ride to Smithfield to go to school for the morning. His experience in the transition classroom helped ease me into this big step and understand how much he would benefit from school.

In addition to Up to 3, Chris also received great services through the feeding clinic (at the CPD); we borrowed books about disabilities from the lending library; and received consultation and help from the Assistive Technology Lab.

Throughout all our experiences, staff listened carefully to what we had to say. They encouraged us in our efforts and, most importantly, showed great respect and compassion to all members of our family -especially Christoph. They were considerate of our time and priorities and created an environment of fun, not guilt or obligation. We were able to borrow equipment, try it out, and then develop devices specific for my son’s needs.

Through connections made at the CPD, I became involved in a local parent support group called the Parent Connection which pushed Logan Regional Hospital to create the pediatric rehabilitation unit, Cache Kids, so families of children over 3 didn’t have to leave the valley for therapy. I also sat on the CPD’s Consumer Advisory Board for a while and got involved with Utah’s Family to Family support network. This led to other connections with Family Voices, Sparkle, IDASL, One Application, URLEND and Medical Home.

I have been involved with Medical Home for the past eight years, working with families and their pediatricians to make sure families receive compassionate, coordinated care and access to the supports they need to successfully care for their children with disabilities.

Now I’m working as service coordinator in the ASD Diagnostic Clinic and plan to continue my association with the CPD and its staff indefinitely.  I  appreciate how my experiences with my son and  the wonderful people who surrounded him and accepted him have shaped the person I have become.

Christoph passed away September 18, 2008.

Little boy sitting on his mother's lap outside hugging and laughing

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CPD Legacy Story: Through siblings’ eyes-a different perspective

October 24, 2011 by cpehrson

This blog was written by the three sisters of Scott Pehrson, a participant at the CPD’s Developmental Skills Laboratory adult day program.  You can read more about Scott’s journey at the CPD in a previous CPD Legacy Story blogpost.

Scott with his sisters

Scott with his sisters, Michele, Jeanette, & Anna

“Rubber Duckie, you’re the one, You make bathtime so much fun!  Rubber Duckie, I’m awfully fond of you, Vo-vo-de-o!”

We know all of the Sesame Street songs that were ever written; when one of us starts singing the first line, the others join in and finish the song.

That’s the kind of thing that happens at our house.  It happens when you’ve spent your childhood listening to all of the Sesame Street videos in the world, over, and over, and over again.  That’s the kind of thing that happens when Scott is your brother.

Scott is the second oldest of four siblings; one brother with three sisters.  He thinks he is the king and we are only here to serve him.  He’s pretty much right about that.

One of the greatest things about growing up with a brother who is severely disabled is that you learn to think of someone else’s needs before your own. “His needs had to come first, and that is sometimes a hard sacrifice to make as a child and as a teenager.  He couldn’t be left alone because of his cognitive limitations; he always had to have someone near him to make sure he had his helmet on (in case he had a seizure); he had to be watched when he ate so he wouldn’t choke; you had to know where he was at all times.” A lot of that responsibility fell on the oldest sister.

Everyone had to make sacrifices to make it all work.  “Having lots of responsibilities that our friends didn’t have was a challenge. I feel like I had to grow up much faster because of the responsibilities I had with Scott,” shares the youngest sister.

At times, each of us had our “Why do I have to have him as a brother?” moments.  Like when he popped off all of the heads of our Barbie dolls…yet again.  Or when we were awakened  by a big plop of drool on our head and a happy “Hi!”  Or when we had to clean up his books spread all over the floor for the hundredth time.  Or when he decided to color all over our homework assignments.  That’s when we decided to put locks on our bedroom doors.

Then there’s all of the summer vacations that we didn’t take as a family.  The times we didn’t go out to eat at restaurants.  The times we didn’t ask our friends over to play or sleepover because Scott would “bug” us.  The times we had to go to Grandma’s house or tend ourselves when we got older while Mom and Dad were at the ER, the doctor’s office, or the hospital with him.

“There were times when I was growing up that I wished Scott was different,” another sister shares, “but he has always been a big part of me.  It wasn’t easy growing up with a brother who has special needs.  It had its tough moments, but those moments aren’t the ones I dwell on.  I dwell on the ones where he has given me something.  When I think of Scott, I think of his sweet smile, his big hugs, and the special moments we have together.”

We’re all on the same page about the great impact Scott has had on our lives.

“At a young age we had responsibilities that most people don’t have, which was a challenge, but also a benefit, because, as an adult, I know that my experiences with Scottie have made me treat and see people differently,” one sister shares.  Another agrees, “He has made me a more compassionate, unselfish person.”

“I think that one of the best things about growing up with Scott is how much he taught me!  He taught me to laugh and to be grateful for the little things in life. He taught me responsibility, patience, persistence, laughter, love and much more.  I feel like I have always had such a special bond with him and am so grateful for him in my life. ”

“I wouldn’t trade him for a brother.  I wouldn’t trade who he is because he has made such a difference in my life.”

One of the differences that he made in all of our lives was who we chose as friends, and eventually, who we married.  Any friends that we brought home had to pass the “Scottie test,” as we called it.  If they ignored Scott, or he didn’t “buddy up” with them, then they didn’t become close friends of ours.  We knew that he was drawn to people with good hearts.  Needless to say, all of our husbands passed the “Scottie test.”

Now that we are all out of the house and Scott lives alone with Mom and Dad, we are still concerned about his needs and the challenge that he is for our parents.  What does the future hold for him and for us, as his sisters?  That’s hard to say at this time, but, we all want what’s best for him.  We know he thrives on his routines and his simple life, and loves to go outside to see his animals. As he gets older and our parents get older, we realize that in order to keep that for him, it will take sacrifices from us.  We are up for it and will do whatever it takes to keep him safe and happy.

We are all so thankful for Scott in our lives and for the things that he has taught us.  For now, it is time for him to teach the next generation.

Uncle Scott with six of his nine nieces and nephews.

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CPD Legacy Story: Scott Pehrson

October 17, 2011 by cpehrson

This CPD Legacy Story is written by Connie Pehrson, the mother of Scott Pehrson who attends the CPD’s Developmental Skills Laboratory, an adult day program.


“He’s just perfect!”  My pediatrician and I shared a moment of awe while he examined my newborn son at his two-week checkup.  I couldn’t have agreed with him more.  Scott was our second child, just rounding out our little family with one beautiful little three-year old daughter, and now a strong, healthy little son.  Our family was perfect.

Several months later, I would remember those words with sadness.

Scott developed typically, reaching his developmental milestones right on time; sitting up, crawling, walking, saying mama and dada and two-three word phrases, pointing to his eyes, nose, and ears when asked to, playing peek-a-boo.

But that all stopped the day that he had a grand mal (tonic-clonic) seizure at 18 months old.

The life that we had known up to then stopped, also, and we began our journey down a path that we had never anticipated nor wanted.  It took the neurologist at Primary Children’s Hospital another year and a half to give us a diagnosis of, not just epilepsy, but a severe form of epilepsy called Lennox-Gastaut Syndrome (LGS), a rare and severe form that involves frequent seizures of multiple types and moderate to severe cognitive impairment.

At age three, we took Scott to the CPD, then known as the Exceptional Child Center (ECC), for a complete developmental evaluation.  The news was devastating;  Scott’s development was essentially at the level of a 12-month old, at best.  Already he had lost some of the skills that he had acquired and had not moved forward in any of his developmental areas in the last year and a half.

As my husband and I tried to process what that would mean to our son’s life and the life of our now, not-so-perfect family, we again turned to the ECC and enrolled Scott in the preschool that was held there.  I remember watching him through the one-way mirror and thinking that he really didn’t belong there.  But, my background in special education (I had taught Special Ed classes for 5 years) told me that, yes, he needed the help that the teachers could give him here.  We were so thankful that there was someone who could help him.

Not only did the staff at the ECC give Scott what he needed, they gave me the emotional support that all parents of children who are newly diagnosed with disabilities need to help them through that first grieving process.  Just being able to talk with other parents whose children were enrolled in the preschool was a great help.

As time went on and the severity of Scott’s condition was revealed, he continued to attend one of the self-contained classrooms offered at the Center as the name changed from the ECC to the Developmental Center for Handicapped Persons (DCHP).  When he turned eight years old, Scott was moved to a classroom in the Logan School District, although at that time we lived in Smithfield.  There was not a self-contained classroom in his home district. He attended many different schools in both districts during the next years.

When Scott turned 22 years old, he began to attend the Developmental Skills Laboratory, an adult day program housed on the USU campus. To my surprise, we discovered that the DSL was yet another program coordinated by the CPD!  Though the name was changed (the DCHP was changed to the Center for Persons with Disabilities in 1991), the services answered the great need we had then, just as it had done when he was a little boy.

He has been at the DSL now for the past nine years, and is still going strong.  They have been through many ups and downs with him; broken bones, sprained ankles, black eyes, cuts, and bruises caused by his many seizures, and last year, a near-deadly illness that sent him to the ICU for ten days.  The staff there are more like friends than providers.  How many providers would bring up a bucket of Kentucky Fried Chicken, balloons, and his favorite Sesame Street books to the ICU and share tears and hugs with us as he struggled for his life?

We are so lucky to have a program like the DSL to send Scott to during the day so that his dad and I can go to work and not worry about what might happen to him.  His safety is their first concern; finding activities to do that will help build his skills is an important part of his day; taking him out into the community to go see a movie or visit a museum is a frequent part of the DSL.  They recently took the whole crew to the Clark Planetarium in Salt Lake City–what brave people they are!

Another long time friend of Scott’s and CPD occupational therapist extraordinaire, Amy Henningsen, took on a project for Scott this year.  Calling for help from some USU students, Amy and her team built an activity board for Scott to use during those long winter months when he can’t be outside.  Not only did they ask what Scott’s interests were, but they went over to DSL to see him and paid a visit to our home to find out more about him so they could make sure that the activities on the board would engage him.  They even made it so we could interchange activities and add new ones later.  We look forward to Scott spending many hours with his activity board this winter!


The CPD truly supports people with disabilities throughout their life span; from birth to adulthood, their services are so valuable and life-changing.  Our family thanks you for being there to support our perfect…well, almost perfect…son.

 

Be watching for a follow up blog on Scott soon, as I share his story through the eyes of his three sisters.

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