Act Early: Learning to recognize the need

July 16, 2012 by admin

This article is the first in a series on overcoming barriers to early intervention for young children with disabilities.

photo of a mother holding a sad toddlerYou notice as your child is developing that they do not appear to be acquiring language at the rate of your neighbor’s child.  Or perhaps your other children walked between 12 and 13 months, and your 16 month-old is still crawling.  Even more concerning, you have a child who seems disinterested in you as a parent, not noticing when you come and go, and having little interest in playing with you.

These are the scenarios that confront parents with children who may later be diagnosed with a developmental delay or disability.  These scenarios do little justice to the fear and anxiety that can grip a parent when faced with these events unfolding in their daily lives.  As humans, we are generally never more vulnerable then when something threatens our own children.

Logic suggests that if we have a concern, we act early and take our concern to our pediatrician.  Despite the simplicity of that suggestion, there are enormous obstacles, even when parents have the best intentions.  In this article, I will review two of those obstacles and suggest strategies for overcoming them.

“He (or she) is just fine!”

When parents first have concerns, it is most natural to turn to friends and family for consultation and reality testing.  Especially as new parents, it is easy to wonder whether we are neurotic first time parents about every single thing our child does or does not do.  We have to remember, however, that it is just as natural for friends and family to want to reassure us.

Their well intentioned advice can lead a parent to avoid an early screening or assessment, which might have resulted in critical early intervention services.  It is OK for parents to turn to family and friends, but if concerns persist, it may be more beneficial to seek out the advice of a pediatrician or speak to a child’s pre-school teacher or childcare provider.  These professionals may give parents more objective feedback about a child’s possible delays.  A parent can also contact early intervention services, speak with professionals at their child’s school district or contact their local health department for further feedback on their child’s development.

“There’s nothing wrong with my child!”

Perhaps the most difficult barrier to overcome in seeking early identification of a developmental delay is the parent who struggles with acknowledging that there might be a problem. Noticing that one’s child is developing differently can bring up up tremendous anxiety, fear and unwarranted self-blame for the parent.

In this case, those around the child such as teachers, babysitters, family and friends all seem to recognize that the child might need to be assessed, but the parent resists or denies the child’s struggles. This may be prompted by fear, misunderstanding or lack of access to education and resources.

This is a tricky situation and generally produces significant stress in all those affected.  Family, friends and childcare providers may be reluctant to bring up their concerns with the parents for fear of offending or alienating them.  Outside observers might also fear that their hunches are invalid and might not want to offend the parent with their suggestions.

There is no right answer in this case. Friends and family will have to decide how to approach the situation, which may range from gentle, ongoing support and  education to a more direct confrontation to simply leaving the matter alone.

Five suggestions that may bring about a more positive outcome include: (1) approaching a parent with empathy, (2) asking the parent first if they are open to feedback about their child, (3) focusing on tangible concerns (such as underdeveloped speech or frequent meltdowns) rather than suggesting a “diagnosis” (4) sharing similar challenges you may have had with your own child; and (5) providing resources on developmental milestones so the parent can be empowered to make their own decision.

Regardless of approach, friends and family need to be prepared for a possible negative reaction from the parents and must realize the parent will need continued support if they begin to acknowledge and address their child’s delays

Coming up:

How to resolve disagreements with a pediatrician about acting early

Concerns that may linger after the diagnosis

photo of Tracy Golden

Dr. Tracy Golden

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.

 Additional resources:

Utah Act Early webpage

Early Childhood News article: What do I say to parents when I am worried about their child?

Utah’s Baby Watch webpage

Directory of Utah School Districts

Directory of Utah’s Local Health Departments

 

 

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Lessons from orphanages around the world: babies need interaction

June 20, 2012 by JoLynne Lyon

Vonda JumpCPD Research Scientist Vonda Jump spoke of her experiences and research in orphanages around the world as a presenter in USU’s Sunrise Sessions last week. USU’s research website now has it available on podcast. It’s definitely worth a listen.

Here’s a quick summary:

Dr. Jump said her interest in infant massage began with her own daughter. “When I messaged her I felt like I was more in tune with her body and what was happening with her,” she said.

It later became the subject of her doctoral dissertation. Previous research had established that massage stimulates the Vagus nerve, which is involved in the body’s automatic systems. It also increases circulation and improves parent/child communication. Her dissertation showed that babies’ attachment to parents was more likely to be secure if massage was used.

That work led to her study on the effects of massage on babies in orphanages. After visiting several around the world, Jump said conditions can vary widely. Some have great services, other facilities literally made her cry. But in general, an orphanage is a money-sucking operation, and its workers are likely to be less-educated. Changes in how they operate should be low-cost, because budgets are tight.

In 2002 Dr. Jump went to Ecuador after a student emailed her to say the babies there were not touched much. That student encouraged her to go and teach massage.

On arriving there, Dr. Jump was impressed by how clean the orphanage was. Sheets were changed daily and the floors were mopped twice a day. But the caregivers didn’t talk to the babies much, and the babies’ language skills were delayed.

The study she did there compared the wellness of babies who were massaged to that of babies who were not. The intervention lasted for about two months, and she flipped a coin to decide which babies would be massaged and which would remain as a control group.

“The babies in the massage group were more likely to be well than the babies in the control group.  But … over this thirty-day period, none of the babies were well very often. They were sick the majority of the time.” A lot of that was runny noses, but neither group had many days without any symptoms.

That said, the group that received massage was 34 percent more likely to be well.

A year later Dr. Jump went to Haiti to continue studying the effects of massage.  This visit took her to the poorest country in the western hemisphere. “I was really surprised by what I saw in Haiti,” she said. “The director and his wife were doing such noble work.” But there were no toys, no running water. The babies stayed on mats outside in the open air, with nothing between them and the flies.

She stayed there for one month and again found that children who received the massage therapy were more likely to be well—though again both groups were sick a lot of the time.

In Haiti she especially noticed how the babies responded to social interaction: by avoiding it. They were so unused to getting attention, they tried to get away from it. But at the same time Dr. Jump was in that orphanage, a group from a foundation arrived and began working with the babies. “All of the babies improved,” she said.

She showed two different clips of the same baby. In the earlier one the child turned away from the person who tried to play with her; in the second one she responded with smiles and eye contact. “The fact that she changed so much in such a short period of time was incredible to me,” she said.

cortisol level graphIn Haiti the research also touched on the babies’ cortisol levels. Cortisol is a hormone associated with stress, and babies in that Haitian orphanage had much higher levels of it than family-reared babies. What’s more, it peaked at a different time of day.

The levels indicate that vastly different things are happening in a stressed baby’s brain, Dr. Jump said. But post-test levels followed a pattern more similar to that of family-reared babies.

“Was that a fluke? I don’t know,” she said. “I don’t know at all.” The pilot study looked at 11 babies total in both the massage and control group. “I’d love to be able to look at this more, but to look at cortisol research, you have to have a lot of money for that.”

All of her orphanage work involved pilot studies. She hopes to someday do more comprehensive research in an orphanage setting.

Her next orphanage visit was to India, where Jump was involved in teaching caregivers more about interacting with babies. The results surprised her. The caregivers did “more than nod, agree with me and go on their same path,” she said. They took the information and ran with it, interacting with children and encouraging development.

The take-home lesson for people in the United States: Going without interaction is stressful to babies. Dr. Jump encouraged her listeners to learn what babies are communicating and respond. Pick up a crying baby. Talk to babies, stimulate their senses and keep it positive. Massage them. All these things help parents and caregivers engineer a better brain in the child, she said.

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Pioneering work and pioneers: two excellent reasons to spend some time in SLC

June 6, 2012 by JoLynne Lyon

Two CPD researchers will discuss their work in Salt Lake City this month. It’s a perfect excuse to take a closer look at what they do. Both lectures are free and open to the public.

Dr. Vonda Jump

Dr. Vonda Jump

Research Scientist Vonda Jump is featured as one of Utah State University’s Sunrise Session speakers. On June 8 she will outline her work in orphanages around the world at the Little America Hotel. “Optimal Child Development” begins at 7:30 a.m.

 

Here’s what she says about her research:

There are many babies who are languishing in orphanages around the world: children are developing now and can’t wait for adoption to have a better life.  There is no reason, in my opinion, for babies and young children to be developmentally behind their home-reared peers.  There are no cost interventions and new strategies that can be implemented with orphanage caregivers to greatly improve children’s immediate and long-term outcomes. 

In my experience, caregivers are eager to get this information so they can improve on the heroic work they are already doing with children who are often forgotten.  As caregivers have learned and brainstormed new strategies, the children have responded by literally having their brains come to life.

 

CPD Director Bryce Fifield

CPD Director Bryce Fifield

CPD Director Bryce Fifield will present “The Untold Story of Mormon Pioneers with Disabilities” during the LDS Church History Library’s Men and Women of Faith lecture.  He speaks Thursday, June 14 at 7:00 p.m. in the Church Office Building main auditorium.

Here’s some background from Bryce:

I got interested in the experiences of pioneers with disabilities while on a youth trek with kids from our Stake several years ago.  We had people with us who happened to have some health issues and it was amazing to see how they responded to the challenges of the three day hike.  It started me wondering how many of the 70,000 Mormon Pioneer Emigrants had disabilities, and what their experiences on the trail were like.

Several colleagues and I have been working on this line of research now for about three years.  It is a complex story.  Many with disabilities did not make the trip. Only a small fraction of the pioneer emigrants had disabilities.  Of those that came, most made it all the way across the plains, some died along the way.  A few were abandoned.

There are some heroes and some who should be ashamed of themselves.  There are stories that are tragic and some that are inspiring. Some of them continue to play out today with a different cast.


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Music Therapy-opening doors for children

April 19, 2012 by cpehrson

Little girl dancing with a huge smile on her face

If you walk down the halls at the CPD at just the right time on just the right day, you will hear some delightful sounds coming out of the Lil’ Aggies Preschool classroom.  You’ll be tempted to stop and peek inside to see what the noise is all about. What you’ll find are some very happy little kids dancing, singing, and playing instruments.

It’s Music Therapy day at Up to 3.

This semester, two USU Music Therapy undergraduate students have come once a week for 30 minutes to give the little children a great experience with all types of musical instruments. Drums, bells, ukuleles, Glockenspiel, shakers, a xylophone, all have found their way into the classroom and into the tiny hands of children who are usually resistant to trying new things.

One of the biggest challenges was to make the activities age and developmentally appropriate to meet the needs of the children.

 

The USU students learned about wait time- waiting long enough for the children to respond-, giving limited  options-only one or two instead of ten that might overwhelm them-, encouraging language-waiting for them to use their words to ask for something.

 

 

 

The children learned many things, also: becoming comfortable interacting with unfamiliar adults; using their words to communicate their wants or needs- such as requesting an instrument-; practicing gross and fine motor skills – hitting the drum, ringing the bells, touching the guitar strings-; following directions-shake the maracas, stop, wait your turn-; and learning to express themselves througn music and movement. The music was also a great avenue for teaching concepts such as opposites- loud and soft; high or low; fast or slow.

Music therapist handing a musical instrument to a small child

 

“Our primary goal this semester was to help the children with socialization through direction following, sharing of instruments, and participation in the different activities through positive experiences with music,” shares Michele Folster, one of the Music Therapy students.

Involving movement with the children turned out to be the key to keeping them interested as well as involved.  “The children have danced with one another, two of the girls even holding hands while dancing,” Michele said.

 

Little girl playing a musical instrument

 

It was fun for the therapists to see that some of the children were more naturally drawn to music than some of their peers; the child that danced around the room, or hit the drum to the music, or used the shakers with little encouragement from the adults.

One image that will forever stay with the therapists is watching one little girl correctly hold a push button guitar with both her hands, pushing the buttons with her left hand like she was really playing a guitar, and bending her knees to dance along as the music played.

Music has power to enrich the lives of all people, but especially those with disabilities.

 

 

 

Aliandria Hansen, another of the Music Therapy students, has seen the power of music first hand as she worked with her little brother, who is on the autism spectrum.  At age 3, he was not speaking very much.  Through the next few years, as Aliandria spent time with him at the piano, playing and singing his favorite songs, she watched him starting to sing along, with his words becoming more and more clear.  Soon he began to vocalize more in general and his vocabulay grew quickly.  Over time, he became very good at communicating.  Aliandria says that, “The music was a catalyst.  It unlocked a door and helped him make a connection regarding communication that he hadn’t seemed to make before.”

That is the power of music, enriching lives and opening new doors.

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Utah disability history on display in education building

February 6, 2012 by JoLynne Lyon

An excerpt from the posters shows a protester in a wheelchair, in front of a bus

Catch the display in the Education Building Atrium through Friday, February 10.

It’s Education and Human Services Week. And while you’re enjoying the ice cream festivities over in the Education Building atrium, you can also learn more about disability history in Utah. (A complete schedule of events is listed on the college website.)

A series of posters on either end of the Atrium takes a Utah-specific view of significant events in disability history.

A look at Utah’s health history highlights includes pioneering female doctors and a Nobel prize laureate. Institutionalization of people with disabilities is examined. Parents reflect on their fight to have their children with disabilities attend public schools. One parent tells of her journey to participate in her son’s early education.  A veteran recalls a project to help the children of veterans exposed to Agent Orange. An advocate remembers the struggle for equal access to public transportation. People with disabilities reflect on the significance of being included in their communities.

So wander over between February 6 and February 10. It’s a great way to celebrate education, human services and making a difference.

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