The Center for Persons with Disabilities at Utah State University
 

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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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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Introducing Utah’s early childhood Act Early Ambassador

February 17, 2012 by cpehrson

 

 

Tracy Golden

Tracy Golden

The CPD would like to introduce Tracy Golden to our Utah readers.  Tracy was recently selected to serve as Utah’s  Act Early Ambassador for the Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early.” program.

The Act Early Ambassadors project is designed to develop a network of state-level experts to improve early identification practices for those providing services to very young children. Golden will play an important role in educating Utah’s parents, healthcare professionals, and early educators about early childhood development, warning signs of autism and other developmental disabilities.

Golden, a social worker and licensed mental health therapist, is a trainee with the Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) Program through the CPD.  She was selected as an Act Early Ambassador because of her commitment to improving the lives of children and families and increasing access to services for children with developmental disabilities.

The Ambassador’s project is a collaborative effort on behalf of CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), and the Association of University Centers on Disabilities (AUCD). Fifteen Act Early Ambassadors were selected to serve as state liaisons to the Act Early Initiative and act as a community agents to increase awareness activities and improvement of early identification practices.

Alfred Romeo is the Campaign Coordinator for the “Learn the Signs. Act Early.” (LTSAE) campaign in Utah. He is working with Tracy Golden to help parents learn about healthy development for their newborns and young children. The LTSAE web site offers a variety of tools and checklists that parents and professionals can use when they have concerns about a child’s development.

Tracy can be contacted at golden.actearly@gmail.com for more information and any questions about the campaign in Utah.

 

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