The Center for Persons with Disabilities at Utah State University
 

Lil’ Marv featured at Pumpkin Walk

October 19, 2012 by Sue Reeves

The Center for Persons with Disabilities’ own Lil’ Marv stars in the Up to 3 program’s display at the North Logan Pumpkin Walk this weekend. In keeping with this year’s theme, “Let the Games Begin,” the blue bull sculpture plays tug o’ war with child-size stuffed figures, some using assistive technology.

The Child Find Committee thought the Pumpkin Walk display would be a good way to help identify children who need services, said Karen Cox, staff assistant for the Up to 3 program. Thousands of spectators are expected during the five-day event.

“We take the ABC class to the Pumpkin Walk every year,” Cox said, and the staff has been mulling the idea since last year’s walk. After discussions during staff meetings, the tug o’ war theme was chosen, then eventually approved by the Pumpkin Walk committee.

Assembling the display was definitely a joint effort, Cox said. She stuffed all the bodies, volunteers from Aggie Advocates and the Council for Exceptional Children helped paint the pumpkin heads, staff members attached all the hair and Director of Exemplary Services Sue Olson made Lil’ Marv’s blanket. In the end, though, it was all trial and error.

“We tried this, we tried that. We used lots of wire, lots of glue on the hair,” Cox said. “It’s up and it’s cute and it’s fun and it fits with our theme. It’s been a lot of fun.”

The Up to 3 program serves approximately 1,000 children across three Utah counties. Up To 3 provides early identification and developmental services for families of infants and toddlers, ages birth to three, both in the home and in preschool settings.

Visit our Facebook page to see more photos of the Up to 3 Program’s 2012 Pumpkin Walk display.

 

 

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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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Act Early: Tools for understanding early child development

August 15, 2012 by JoLynne Lyon

a mom and her toddler pull faces

All parents of young children should learn about typical development so they can be better prepared to nurture a growing child.

Act Early is a series of posts by Utah’s Act Early ambassador, taking on hard questions about early intervention. 

Whether you suspect a developmental delay or not, tracking your child’s early development is a good practice.  My suggestion to all parents of young children is to surround yourself with information about typical development that can guide you in understanding your child’s early years.  You will find yourself better prepared to nurture and respond to your growing child.

I wholeheartedly endorse the Learn the Signs/Act Early materials because they are free, user friendly, and streamlined to focus parents on developmental milestones for children ages 0 to 5.  In addition to outlining the milestones a child should be reaching, the materials also cover early warning signs of delays.

There are a number of advantages of using these materials, or a system like them, to track healthy development.  First, the materials come with checklists a parent can easily use to track development month to month.  Second, if a parent detects a delay or has a concern, they can bring the checklists to pediatricians and other providers as sound documentation of their concerns.  Third, the printed materials are also available online, along with an enormous reservoir of information and other resources, both at the national and State level. There are even articles and tip sheets that address concerns, including what to say to one’s doctor when you disagree.

Take a look at these materials. Consider tracking your child’s early development on a regular basis.  The earlier a child can be connected to appropriate and effective services, the more positive the long term outcome is likely to be.

For further questions, access to materials and other resources, we invite you to connect in any of the following ways:

Contact Tracy Golden, Utah Act Early Ambassador, at 801.597.5386 or golden.actearly@gmail.com

Check out the Utah Act Early website.

Watch Baby and Toddler Milestones, a seven-minute video from the Albert Einstein College of Medicine that shows a baby’s development in good detail. Or view the Baby Steps video from the CDC website. It’s four and a half minutes long, and it’s captioned.

Dr. Tracy Golden

Dr. Tracy Golden

In addition, you can read the other posts in this series:

Concerns after the diagnosis

When you disagree with your pediatrician

Learning to recognize the need

Dr. Tracy Golden is Utah’s  Act Early Ambassador for the Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early” program. Its mission is to improve early identification practices for those providing services to very young children.  Golden received her Ph.D. in Social Work from the University of Utah and has a private clinical practice for teens and adults with High Functioning Autism and Asperger’s Syndrome. She is also a staff member at the CPD.

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Act Early: concerns after the diagnosis

August 6, 2012 by admin

A serious boy gazes upwardAct Early is a series of posts by Utah’s Act Early ambassador, taking on hard questions about early intervention.

Today’s installment examines concerns that may continue after the diagnosis.

“I don’t want my child to be labeled!”

Sometimes parents fear that a diagnosis will bring a label that somehow limits their child’s full potential. They don’t want the label to become the child’s defining characteristic.   They fear their child may be teased for being “mentally retarded” or “autistic” or “handicapped.”

No parent wants their child to be reduced to a label that can only explain part of what their child is experiencing. Such labels ignore the rest of the child’s unique personality and gifts.

A parent’s concerns in this area are valid and should not be minimized or overlooked.  The disadvantages associated with labels are real.  It is important for parents to realize, however, that if their child has a developmental issue, it will remain, label or not.  Second, a child whose behaviors fall outside of the norm may be labeled anyway, but not so kindly, such as being called “lazy”, “dumb” or “defiant.”  It can be more helpful to a child if the underlying condition receives a medical or mental health label.

At its best, a diagnostic label is a guidepost to treatment and intervention services.  Diagnostic categories give definition to a child’s challenges and create a pathway to effective treatment.  If a provider does not know what a child has, they cannot select the appropriate treatment.  Whether or not parents choose to share that “label” with others (including their child) is a separate issue.

A sometimes overlooked reason for obtaining a “label” is because sometimes services are only available if the child has received a diagnosis.  Thus, the diagnosis is key for access to treatment.

“If we start medication now, we’ll never be able to stop!”

Particularly when faced with a decision to start a child on medication, there is often the fear that once a regimen is started, it will be a regimen for a lifetime.  Parents are reluctant to have their child become “addicted” and may resist what they believe is a slippery slope to a lifetime of medications and adverse side effects.

Parents need to be aware this fear is a myth.  It is much more likely that a medication will be tried, adjusted, and even discontinued, depending on how the child responds to that medication.  If the medication does not produce the desired results, there will not be a valid reason to continue to use the medication.  It is rare that a medication could not be stopped for fear of the child being harmed; however there are protocols that some medications be withdrawn more slowly than others to prevent adverse effects.

The choice to use medication involves an ongoing dialogue between parent and provider, and the choice to stop using a medication or to reduce the levels of a medication also need to be discussed with one’s provider.  But starting a child on a medication is not a commitment to a lifetime regimen.

For a more complete analysis on making the decision to put a child on medication, see this exchange between a parent and physician related to starting a child on medication for Attention Deficit Disorder.

Dr. Tracy Golden

Dr. Tracy Golden

Earlier in this series:

Learning to recognize the need

When you disagree with your pediatrician

Dr. Tracy Golden is Utah’s  Act Early Ambassador for the Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early” program. Its mission is to improve early identification practices for those providing services to very young children.  Golden received her Ph.D. in Social Work from the University of Utah and has a private clinical practice for teens and adults with High Functioning Autism and Asperger’s Syndrome. She is also a staff member at the CPD.

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Act Early: When you disagree with your pediatrician

July 25, 2012 by admin

This is the second article in a series on overcoming barriers to early intervention.

photo of a serious boyby Utah’s Act Early Ambassador Tracy Golden

In our first installment, Utah’s Act Early ambassador explored the barriers a parent might experience before recognizing the need for early intervention.

Now she addresses the question: what happens when parents believe their child has a developmental delay, but their pediatrician disagrees?

Let’s wait and see

Sometimes pediatricians tell  parents their fears and concerns are not warranted.  Many parents with a child who is later diagnosed with a developmental delay were at one time told that what their child was experiencing was “normal” and the recommended strategy was to “wait and see.”

This advice is heartbreaking to parents who then lose several years of early intervention services to well intentioned providers who did not recognize the early warning signs of delays.

Pediatricians are well trained in the medical treatment of children, but sometimes they have less expertise in recognizing the more subtle signs of a developmental delay.  Due to the typical length of a pediatric visit, they may not have the opportunity to observe the behaviors the parent is concerned about.

When parents are faced with this dilemma, there are a number of steps they can take.  First, they can bring materials to their doctor that describe in a more objective format their concerns (see the Milestones Moments materials below).  Second, they can obtain feedback from teachers and babysitters to bolster their case about their concerns.  Third, they can request a longer visit with the pediatrician. During that appointment they can simulate the conditions which may evoke the behaviors they are concerned about.

If continued dialogue with the pediatrician is not fruitful, they should seek a second opinion.  As good consumers of healthcare, it is perfectly reasonable for a parent to want to seek services elsewhere if they do not believe their concerns are being adequately addressed.

Resources

The Centers for Disease Control and Prevention have a website through which parents can learn more about developmental milestones, healthy child development and the early warning signs of delays.  Free, parent-tested materials are available for ordering, or can be viewed online and printed by parents.

Dr. Tracy GoldenComing up: Additional concerns after the diagnosis

Previously in this series: Learning to recognize the need

Dr. Tracy Golden is Utah’s  Act Early Ambassador for the Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early” program. Its mission is to improve early identification practices for those providing services to very young children.  Golden received her Ph.D. in Social Work from the University of Utah and has a private clinical practice for teens and adults with High Functioning Autism and Asperger’s Syndrome. She is also a staff member at the CPD.

For additional resources in Utah, please see:

Utah’s Act Early  and  Help Me Grow webpages.

 

 

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