CPD Legacy Story: Jeffrey Hansen

May 12, 2011 by cpehrson

Jeff Hansen

Our son Jeff has been attending the Developmental Skills Lab (DSL) for almost a year. DSL, formerly known as Bear River Activity and Skill Center (BRASC), is a program at the Center for Persons with Disabilities at USU. A few years prior to going to DSL, Jeff had attended another day services program but gradually became disinterested and began asking if he could stay home until he just stopped going. In May of 2010 we began to look for a day services provider that would meet Jeff’s needs. We visited several places and after visiting BRASC, Jeff said “I want to go there”.

From the very first day, Jeff has enjoyed his experience at DSL; he looks forward to going and being with his friends, and of course, he considers everyone there his friend. Although Jeff has to get up quite early in order to be ready when the DSL van gets there to pick him up, he eagerly does so and is ready and waiting when the van gets there.

Jeff has always had a pleasant personality, but he went through a period where he had become somewhat withdrawn and seemed uncomfortable around people. Since he has been going to DSL I believe he has become more outgoing and just seems happier. He watches the calendar and keeps track of scheduled activities and enjoys the various outings, especially if they have anything to do with eating.

In early March, Jeff had to undergo back surgery. When he was brought to his room after surgery and still groggy from anesthesia, he began asking where certain people were. After asking about his brothers, he then asked about some of the staff at DSL. It appears he holds the DSL staff in pretty high regards.

While recovering from surgery, Jeff had to take a few weeks off attending DLS and was very anxious to get back. Although he does need a walker, he has now recovered enough to once again attend, what appears to be, one of his favorite places to be.

On behalf of Jeff, we are very appreciative of the staff at DSL.  May you continue to make a difference in the lives of the special people you serve.

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CPD Legacy Story: Eric Lewis

April 20, 2011 by cpehrson

This Legacy Story is written by the mother of two of our CPD staff members, Gina Cook, Research Associate and Evaluator, and Amy Wolters who works on the National Children’s Study.

Sandy Lewis shares with us the impact that the CPD programs (back then known as the Exceptional Child Center-ECC) had on her son, Eric.

Written by Sandy Lewis

Our son, Eric, was born Oct. 5, 1977; he had a brain hemorrhage when he was six hours old.  It left him with severe Cerebral Palsy.  As a new parent of a disabled child, where do you turn to find out the things that you need to do to help him achieve his best potential? I don’t remember exactly how old Eric was when we were first contacted by the Exceptional Child Center, but it was pretty early.

First of all,  people were sent to our home to give us their expertise, their ideas, and their suggestions to help him achieve whatever level was possible.  They had great ideas that really helped us and our family.

When he was a little older, he started attending the Exceptional Child Center preschool program. Connie Morgan was his teacher, she was amazing. She loved all the children in her classroom and we, as parents, appreciated so much the things that she did for our son. She not only cared about our son, she cared about our whole family.

One of my favorite things that happened while Eric was attending the Exceptional Child Center was the annual Christmas program. Eric was so excited to be a part of it. Every year that the program was held, it was the highlight of our Christmas season. I remember one year, Eric and Sydney D. were both reindeer.  They were so cute with their antlers and their wheelchairs decorated.  After the Christmas program, Sydney told us that when they were 8,  she and Eric where going to be married. Sydney has since passed away.

Eric made lots of great friends during his time at the ECC.

Oh, what special memories we have of the time our son, Eric, spent at the Exceptional Child Center. We are so grateful for all the help they gave us to help make his life better…and ours.  We will always have a fond place in our hearts for all those who worked so hard and loved Eric and made his life better.

Thanks,

Sandy and Ty Lewis

 

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CPD Legacy Story: Andrew Crookston

April 4, 2011 by cpehrson

This legacy story was written by Ashley Crookston, mother of 5-year old Andrew.  Andrew attends the ASSERT classroom located at the CPD.  ASSERT, the Autism Support Services: Education, Research, and Training program, is a state-of-the-art preschool program that uses research-based techniques to address the individual needs of autistic children.

Written by Ashley Crookston

Andrew was diagnosed with ASD just after his second birthday.  Thankfully, we were referred to the Up-to-3 Early Intervention program who helped us through the most helpless feeling time.  But as Drew’s 3rd birthday approached, my husband, Nate, and I realized that Drew was not where he could be.

We had heard of the ASSERT program, but despaired of getting accepted into it (due to a long waiting list).  At that time, there were only 8 students in the program.  However, we put Drew on the waiting list anyway, and were pleasantly surprised when we got a call from Dr. Higbee shortly after Drew’s 3rd birthday, inviting us to be interviewed and evaluated for the program. We were accepted, and Drew started at ASSERT in August of 2009.

The timing could not have been better.  Drew was, at that time, in a period of impressive verbal growth, and ASSERT was able to take that natural emergence and turn it into true language.  When he entered the program, we would estimate he had between 20-30 regularly used words.  Now, almost two years later he has a full vocabulary.  And, although verbal communication will never be his “first language,” he is “fluent” and is able to communicate almost all of his wants and needs in a calm and easily understandable way.  Not just to us, who know him well, but to strangers, also.

ASSERT has also been wonderful in helping us as parents and as a family through many difficult learning moments.  They have, at home and in the classroom, worked with us and Drew on important things such as: learning to stop when we say “stop”, toilet training, proper behavior in public settings, and eating.  All of these are ongoing, of course.  Every day at school and at home Drew is coached, reminded, and helped in all of these things.

Eating is a particularly good example of the efforts put into Drew’s education.  Drew struggles with most textures and tastes, and has an extremely limited diet.  When we alerted ASSERT of our desire to expand his diet, they came up with an eating program for us and them to follow to help Drew.  It was not easy to do. However, Drew’s case manager was there whenever we needed her to help us and give us suggestions.  The program was mainly implemented in the home, but at school they were doing parallel programs to help the eating program succeed.   When Nate and I felt that we had gotten as far as we could with that eating program, Drew’s current case manager immediately evaluated the situation and came up with a new program for us to use.  Again, he showed us how to implement the program, and has continued to help us with it.  And still they work at school on similar things to encourage what Drew is doing at home.

One of the greatest things about ASSERT is the emphasis they put on the home.  Dr. Higbee, before accepting us to the program, made sure we understood that what Drew learns at school is not any use if it is not taken into the home and becomes part of the routine there.  It is no good to anyone if Drew can do amazing things at school, but comes home and closes down.  Because of this, Drew’s entire life has changed.  Not only is he learning to be a good student, he is learning how to be a good person; to interact correctly with others and to follow social rules that are instinctual or easily learned for neuro-typical children.

The ASSERT program cannot cover every aspect of Drew’s education, though, and they realize that.  Their main focus in on more “academic” matters.  However, where they are not as strong in their teaching, they are able to find ways to supplement.

ASSERT is not the ideal classroom for social skills.  So, they have encouraged, basically required us, to enroll Drew in the local public preschool, where he will get more large group and peer interaction time.  Also, as Drew has learned and become ready for it, they have helped us to enroll Drew in The Children’s House, a preschool on campus for “normal” kids.  Drew attends The Children’s house for 2 hours every week.  He has an ASSERT teacher with him to help him the whole time.  There he gets to interact in situations  that will come up after he leaves the ASSERT program.  The ASSERT teacher can guide and help him to learn to correctly behave in those situations.  Not only is Drew’s time at The Children’s House invaluable for his life skills, but he loves it.

That is one of the best parts of ASSERT, Drew loves it; it is fun.

We have been very blessed that Drew was able to be accepted into ASSERT when he was 3, and we have had two years in this wonderful program.  I cannot say enough about it.  I have been able to watch my son completely change and blossom during that time.  I cannot even guess what he would be like today without it.

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CPD Legacy Story: Clarrisa Barnhill

March 21, 2011 by cpehrson

This CPD Legacy Story is about Clarrisa Barnhill. Clarrisa worked as a USU intern student at the Utah Assistive Technology Lab alongside Stan Clelland, learning how to repair and maintain AT equipment.  She is currently the Coordinator of the AT Lab at USU.

By Clarissa Barnhill

Do you have a problem? Don’t worry, we all have them. And, at the Assistive Technology (AT) Lab at USU, we love problems of all shapes and sizes. We love them because we love to help you solve them.

Some examples: A personal problem I have had is, that due to my height, I have a difficult time finding pants that fit well. For several years now I have had to alter pants in order to accommodate my long legs. At home, I created a seat for a tire swing so my nieces and nephews could use it without falling through the hole. Creating personal AT sparked my interest and the Utah Assistive Technology Program (UATP) was a perfect channel for me to continue creating AT.

My first experience with the UTAP was to work in the AT Lab as a student in the Special Education AT class. My classmates and I made simple, low-tech AT devices. I would excitedly take a bookstand or a cool switch home to show my roommates and friends.

Along with the regular projects, I was part of a team that designed and built the IWAS (Irrigation Wheel Assembly Snapper). We created the IWAS to help a man who assembled irrigation wheels. He has the use of only one arm, so, in order to assemble the wheels, he had to rely on the help of another person. With the IWAS, he was able to do it completely on his own. Presenting the completed device to the man was an event that solidified my passion for AT. We brought the IWAS to his workplace; showed him how it worked, and then let him put a wheel together on his own. The excitement on his face allowed me to see how significantly independence enhances a person’s life.

Clarissa and other students working on the IWAS at the AT Lab.

After the AT class was over, I continued to volunteer in the Lab. At first, I came to make modifications to the IWAS, and then stayed on to help with other projects. The next school year, I worked in the AT Lab again. Stan Clelland ran the Lab and took the time to teach me about safety, wheelchair maintenance, the use of different tools, and the best way to help people. Working in the AT lab was one of my favorite things to do with my time, as well as a fantastic opportunity to learn and to be more aware of the world I live in.

The lessons I learned in the Lab helped me during the next few months of my life as I worked for Utah State University Extension and completed my student teaching in an elementary school resource room. I started looking for a job in December of 2010. During the process of submitting applications and interviewing, I stopped by the AT Lab to say hello and see how things were going. When Stan heard that I had not found a job yet, he told me we needed to talk. He said he was leaving and that the AT Lab Coordinator position would be open. I applied, and after a very quick week, I began training with Stan. The more time I spent with him, the more nervous I became, as I realized how many things I would be responsible for.

Since being left to coordinate everything on my own, I have learned that I really have so many supports and resources and am in no way left to do it on my own. The UATP is a team of people who accept each other for their weakness and expect everyone to share their strengths.

I see the services provided positively affect lives every day. It affects my life, the students’ lives, and the consumers’ lives as they participate in creating and using AT devices.

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CPD Legacy Story: Charlotte Spencer

February 9, 2011 by cpehrson

This CPD Legacy Story is written by Charlotte Spencer, the mother of one of the students at the CPD’s Postsecondary Education, Employment, and Research (PEER) program.

Charlotte, herself, is attending the Interdisciplinary Disability Awareness Learning and Service (IDASL) class offered by the CPD,  as a family member of a person with disabilities.  She also  is a family representative on the CPD Consumer Advisory Council.

From a proud mom’s perspective

By Charlotte Spencer

This is Alessandra.  She is 20 1/2 years old and the oldest of 3 daughters.  Alessandra is autistic and currently attends the PEER  classroom at the CPD.  She is in her last year there.  She has had so many wonderful experiences through the PEER Program.  She has worked at various places on campus, and gets to feel first-hand the student atmosphere.  As she walks to her job-site, she can be a part of the hustle and bustle of campus life.  An experience her mother never dreamed possible for her.  And now, sadly, it is coming to an end.  But in reality, this will be a new beginning for the next step in Alessandra’s life.  That even though she will always live with me as a dependent, she can still live with independence and utilize her life skills she has learned in the PEER Program.  As her mom, I couldn’t have imagined a better Post-High experience for my very special daughter, Alessandra.

Alessandra working with another PEER student

When you’re a parent of a child, or in my case a young adult, with special needs sometimes your “fur” gets a little ruffled.  You may politely bite your lip as the professional sitting across from you in your child’s I.E.P states that your child just doesn’t ‘quite’ meet the criteria to receive ‘X’ services (fill in the blank).  Or early in your child’s diagnosis, your child’s teacher suggests to you that Ritalin “might help”.  Yes, as a parent of a child with a disability, I have been known to bristle up a bit, and to come across as someone with a wall up.  A long time ago in a state far, far away, I had to employ the services of an attorney at one point for my daughter to receive services.  Said attorney gave me some great advice, ‘you are your child’s best advocate’.  (I want to comically add to that comment, ‘and if you don’t like what I have to say, I’ve got legal council and I’m not afraid to use it!’)

On the matter of being an advocate, I have had the opportunity to participate as a parent advocate and be a part of the IDASL this year. I like to joke- I must not have gotten it right the first time – (gosh it’s like having to hire that attorney all over again…I’m kidding).  Through this wonderful class, I can share my experiences, as well as my daughter’s, and also learn from the students attending from their various disciplines.  As we hear advocates in the community and various organizations speak of the hurdles they are up against, or the barriers in the way of individuals with disabilities, we can begin to better understand how we can change our perspective or thinking about the matter of disabilities and advocacy.

I’ve learned we are all on the same side of the wall.  That it isn’t just MY wall, and MY frustration.  It really is our battle together.  And if we, as one collective whole,  cannot meet and agree to the specifics and logistics of a child’s needs, than truly we, as a collective whole, have failed that child indeed.

Hillary Clinton was right (at least on this point) when she said, “It takes a village to raise a child.”

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