Posts Tagged ‘developmental delays’

Developmental screenings are helpful for early diagnoses

Monday, April 10th, 2017

doctor-and-babyBefore your baby leaves the hospital, he receives a series of tests called newborn screening. These tests look for serious but rare conditions, including blood, hearing and heart disorders. If a problem is discovered through newborn screening, your baby may receive treatment and often avoid a more serious health problem. Early diagnosis is critical in detecting certain medical conditions.

Other screenings occur after your baby is home from the hospital

Between birth and age 3, your baby goes through incredible changes. He is growing and developing every day. To be sure that your baby is “on track,” your baby’s healthcare provider will check his developmental milestones at each well-baby visit.

These milestones are the major achievements in your child’s life. They include smiling, babbling, rolling over, sitting up, crawling, reaching grabbing, talking, walking and other accomplishments. Parents can check milestones, too. Here is a list of behaviors to look for at specific ages.

If either you or your baby’s provider are concerned that your baby is not progressing well, you can request a developmental screening. It is free as part of the federally funded early intervention program. Similar to newborn screening, this screening helps to identify potential health or developmental problems early.

If your child qualifies, the early intervention program may include services such as speech therapy, physical or occupational therapy, or even a special preschool setting. Early intervention can be enormously helpful in helping your child improve. And, the sooner you begin intervention, the sooner your baby can reach his full potential.

One example of a diagnosis where early intervention is particularly important is Autism. April is autism awareness month, a time to remember that this developmental disorder affects 1 in 68 children in the U.S. Officially called autism spectrum disorder or ASD, it is a developmental disability that can cause social, communication and behavior challenges – from mild to severe. This is why it is referred to as a “spectrum” disorder.

ASD can be difficult to diagnose because there is no medical test, like a blood test, to give a definite answer as to whether your child has it or not. Usually, children with ASD start showing signs or symptoms of the disorder in their toddler or preschool years, and some babies show signs in their first year of life. For this reason, taking your child for regular visits with his healthcare provider is particularly important so that his development can be monitored. If your child needs early intervention services, getting it early is key in helping him progress.

Bottom line

There is a wide range of “typical development” for children. But, if you are concerned about your child’s progress or feel he is delayed in reaching his milestones, talk to his healthcare provider sooner rather than later.

You can find more information in our series on Delays and Disabilities: How to get help for your child.

Remember – don’t delay with delays.

Have questions? Text or email

New research identifies some causes of developmental delays

Wednesday, June 1st, 2016

Through DNA sequencing, a new study has uncovered genetic causes for certain developmental delays. Finding the underlying reason for these delays then allowed treatments to be specifically targeted to 44% of the affected individuals.

Many children, especially those born prematurely, often have delays in their development. They may not walk, talk or reach milestones during the time frames that are typical for children in their age group. Others suffer from intellectual disabilities. These lags are collectively referred to as developmental delays.

In many cases, the underlying cause of a developmental delay is not known. But, there are 90 types of inborn errors of metabolism  (inherited disorders where the body cannot properly turn food into energy) associated with intellectual disabilities, which are treatable. In this study published in the New England Journal of Medicine, researchers from the University of British Columbia in Canada sought to see if other metabolic disorders might be discovered.

First, the researchers identified individuals with developmental delays and intellectual disabilites that were caused by metabolic problems. They then screened for and ruled out the 90 metabolic diseases known to cause intellectual delays, and tested the DNA of the remaining participants.

The results? Seventeen of the 41 individuals were diagnosed with conditions which enabled them to receive a targeted change in their treatment options. Treatments included specific diets, medications or supplements. In a few of the study participants, the results of the new treatments were substantial – – improving attention, communication and seizure control.

March of Dimes Chief Medical Office Dr. Edward McCabe commented “there are a number of specialized centers taking a DNA sequencing approach to identify the causes of diseases in patients where the cause had remained unknown. Clinicians are learning who has the expertise.”

The bottom line

As DNA sequencing becomes more accessible, it is hoped that children with developmental delays, and especially intellectual disabilities, will be able to receive targeted interventions earlier, which in some cases can dramatically change the course of their condition.

“This is the way medicine will be practiced and it’s important for us to recognize there are a lot of genes for which we haven’t identified a disease association,” adds Dr. McCabe. “Using sequencing, we can get a precise diagnosis on an individual where there was none prior.”


See our info on Delays and Disabilities – How to get help for your child.


Vocabulary at age 2 may predict kindergarten success

Wednesday, September 2nd, 2015

parents reading to toddlerThe size of a child’s vocabulary at age two may predict how well he will do in kindergarten, according to a new study. The larger the oral vocabulary, the better prepared he will be for school.

The study looked at 8,500 children in the United States. The researchers found that:

  • preemies or babies with a very low birth weight, and babies whose mothers had health issues had smaller vocabularies.
  • children with parents who frequently interacted with their children and read to them on a regular basis had larger vocabularies.
  • girls tended to have a larger vocabulary than boys.
  • children from higher socioeconomic homes had larger vocabularies.
  • children with larger vocabularies at 24 months of age did better in reading and math and had fewer behavioral problems.

The researchers believe that interventions should be started early enough so that children who are at risk due to medical/health problems or socioeconomic disadvantages, have the time to develop and catch up. Interventions need to be targeted especially to toddlers who are living in disadvantaged homes.

Keep in mind that no two children develop exactly alike. Some are early bloomers while others are later bloomers. And one study cannot predict an individual child’s development.

What can you do?

The single most effective way to help your baby expand his vocabulary is to read to him. Start when your baby is born, and read every day. Reading aloud helps promote language skills – vocabulary, speech and later on, reading comprehension. See this post to learn just how important reading is for your baby and to learn where to get books. See the AAP’s article for tips on how to make it fun. And remember, the best parts about reading to your little one are the snuggles and cuddles that go along with it.

If your baby is showing signs of a developmental delay, speak with his health care provider, or contact your Early Intervention Program and ask for a free screening. If your child qualifies, he may receive personal, targeted intervention (such as speech therapy) to help him catch up.

Don’t delay with delays!

Have questions? Text or email them to

The study appeared in the journal Child Development.

Learn how to help your child in our Delays and Disabilities series.

Summer programs for kids with special needs

Wednesday, May 22nd, 2013

summer-vacation1If your child has an IFSP or an IEP and is receiving services for a developmental delay or a qualifying disability, it may be possible for services to continue throughout the summer months.  This is called Extended School Year services or ESY.  ESY may include continued special education services or related services. It is sometimes possible for a child who does not have an IEP but rather a 504 plan to receive ESY. ESY is based on your child’s individual needs and your state’s regulations.

How is ESY helpful?

For most children, receiving special education or related services during the school year is more than adequate for their needs. But, for other children, the time between June and September is too long a period to go without receiving services. For instance, if your child has a language disability and has been receiving speech therapy, it may be hard to stop services for the summer without fearing that progress won’t continue, or worse, that your child may lose skills.

Extending services throughout the summer months may be appropriate for your child. This may take the form of additional therapy, academic tutoring, summer school, or a special program. It all depends on your child’s individual needs AND the regulations in your state.

Who qualifies for ESY?

Wrightslaw has a great page that tells you what you need to know about ESY services for your child. They emphasize that you need to understand the regulations in your state as well as recent court decisions that would establish a precedence or new procedures which may apply to your child’s situation.  On their webpage, Wrightslaw refers to a great article “Standards for Extended School Year (ESY)” by Nissan Bar-Lev. The author describes the legal basis and standards for ESY as defined by federal courts around the country. It is well worth a read.

Once you understand your state’s regulations, you can discuss your concerns with the IEP team at your next IEP meeting. ESY may or may not be necessary to comply with the requirement that your child receive a free and appropriate public education (FAPE).

If the IFSP/IEP team (of which parents are members) decides that your child qualifies for ESY services to continue during the summer months, then services would be added to your child’s program on her IFSP or IEP. (Your child’s IFSP or IEP is the document that describes all of the services that she will receive all year, due to her developmental delay or disability. Please refer to my prior post on how to write good IEP goals.)

What else can your child do for the summer?

Whether your child qualifies for ESY services or not, or if you have other ideas for her summer program, you might consider a summer camp for all or part of your child’s summer.  It seems that there is a camp program for every child, with every diagnosis or need. Check out this article on camps for kids with special needs and learn what to look for and questions to ask .

My daughter used to qualify for continued speech therapy sessions during the summer through ESY. Instead of putting her in an academic summer school program with speech therapy sessions during the day, I opted for an artsy kind of day camp at the YWCA (more her style) and kept twice weekly speech sessions early in the morning. This way, she still got her therapy but also had the benefit of an entirely different kind of summer experience.  The school system provided the speech sessions as part of her free and appropriate public education (FAPE), while I paid for the summer camp. The theatrical part of the camp helped her with her communication skills, and introduced her to the world of theater.  It started a lifelong love of drama for her, and she acted in plays in high school and beyond.  Who would have thought that a little girl with a speech disorder would enjoy speaking on a stage! It provided a different way of tackling her speech problems and gave her a much needed shot of confidence. The end result was that her speech skills would increase dramatically in one summer session.

Often dabbling in something different for the summer can open doors for your child that you never thought of!

Bottom line

Be sure to explore all of the options for your child’s summer program. This could be a time to introduce her to new experiences which will only enhance her learning and help her progress. This is the time to be creative and to have fun. When kids are happy, they tend to blossom.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

What is an IEP?

Wednesday, March 6th, 2013

foldersAn IEP is short for “Individualized Education Program.” It is both a process and a written educational plan for a child with a disability. It is a document that lists all of the educational services that your child will receive, if he qualifies. In a prior post I told you all about the IFSP (for babies and toddlers). Well, the IEP is a similar document but it is for children ages 3 – 21.

The IEP is supposed to be just what it says – INDIVIDUALIZED, which means that it is specific for your child’s needs. It is not one size fits all. It is also supposed to be EDUCATIONAL, which means it should look at three main areas of your child’s life:  the general education curriculum, extracurricular activities and nonacademic activities. Lastly, it is a PROGRAM or PLAN, where all of the services your child will receive are laid out and detailed in writing.

In a sense, the IEP is like a roadmap. It shows you where you are now, where you plan to go, and the roads that you will take to get there. It sounds simple, but it is actually more challenging to write and put together than you might think. This post is just a quick overview to help you understand the basics.

Who gets an IEP?

In prior posts, I explained how to have your child (from birth to age 3 or ages 3 – 21) evaluated for free if you suspect that he has a developmental delay or problem. Once the team (evaluators, school officials and parents) has met and discussed the results of the testing, you will learn if your child is considered eligible for services (if he fits one or more of the categories of disability.) If your child is eligible, the team will develop an educational program (the IEP), that will be specific for your child’s needs.

What’s in an IEP?

The IEP may include special education, related services and/or supplementary aids and services. The IEP is first based on your child’s “present levels” which is a snapshot of your child’s current level of academic and functional performance. In other words…what he is able to do now as compared to his non-disabled peers. Then, based on his present levels and his delay or disability, the IEP sets measurable annual goals. The goals should specify:

• Who will provide the service (eg. the regular ed teacher, special ed teacher, reading specialist, physical therapist, etc.).
• What kind of service will be provided, such as curriculum modifications or adaptations, the types of related services or aids- (eg. specialized reading curriculum, speech therapy etc.).
• Where the service will be implemented (eg. the regular ed classroom, playground, counselor’s office, etc.).
• When parents will receive reports on how well your child is doing. By law, you need to receive progress reports at least as often as children without disabilities. Often a school system will send home the IEP progress reports when Report Cards are sent home for all children.
• When the goal will be achieved (eg. by the end of the marking period or by the end of the year).
• How the goal will be measured and how you will know the goal has been achieved (eg. a benchmark, such as a test score that shows if the goal has been reached).

An IEP is a living document that can be changed or updated by the IEP team, of which parents are members! It must be reviewed by the IEP team at least once a year, but it can be reviewed and updated more often if necessary.

Where can you get more help with IEPs?

A great place to go to understand your options, how to prepare for IEP meetings, and to understand the process of creating a great IEP is the Short and Sweet IEP Overview on the Center for Parent Information and Resources (CPIR) website. In particular, they provide guidance on how an IEP team can write effective goals. Another great resource is Wrightslaw. They go into even greater detail which will help you with every aspect of the process.

Why should you learn about IEPs?

The more you know about the law and the special education process, the better you can help your child. Knowledge is powerful!  If your child has a delay or disability, be sure to check out CPIR’s and Wrightslaw’s information (above). It will help you understand the process to become a more effective advocate for your child and to feel more in control of your journey.

Have questions?  Send them to

Note: This post is part of the new weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

Learning the lingo

Wednesday, February 20th, 2013

worried-womanthmOne of the most challenging aspects about having a baby or child who needs early intervention or special education services is understanding all of the terms that you hear. This blog post is dedicated to helping you learn the lingo of developmental delays, disabilities, early intervention and special education.

Unless you know the language, you will not know what is going on. At the very least, you need to know the acronyms or abbreviations for some of the more common words or terms, so that if you are at a meeting, or in a doctor’s office, you can understand the conversation. It will also help you to make sense out of the reports and evaluations you will read about your child. So, here is your official cheat sheet. I suggest you print it out and keep it handy.

First, I list common terms in the early intervention and special education world; then, I list acronyms and abbreviations for common diagnoses. Any term in bold is explained in more detail in another blog post in this series. Of course, this is not an exhaustive list but it will definitely get you started.

Common terms:

ABA      Applied Behavioral Analysis Therapy
ADA      Americans with Disabilities Act of 1990
ADLs     Activities of Daily Living
ASL       American Sign Language
AIT       Auditory Integration Training
AT        Assistive Technology
BOE      Board of Education
BRS       Bureau of Rehabilitation Services
CA        Chronological Age
DOB      Date of Birth
DOE      Department of Education
ECE       Early Childhood Education
EIS        Early Intervention Services
ESD       Extended School Day
ESY       Extended School Year Services
FAPE    Free and Appropriate Public Education
FERPA   Family Educational Rights and Privacy Act
GE         General Education
IDEA     Individuals with Disabilities Education Act
IEE        Individual Educational Evaluation
IEP        Individualized Educational Program
IQ          Intelligence Quotient
IFSP      Individual Family Service Plan
LEA       Local Education Agency
LRE       Least Restrictive Environment
MA        Mental Age
NCLB    No Child Left Behind Act
OCR      Office of Civil Rights
OT        Occupational Therapy
PLP      Present Level of Performance
PPT      Planning and Placement Team
PT        Physical Therapy
RS        Related Services
RTI       Response to Intervention
SAS      Supplementary Aids and Services
SEA      State Education Agency
SPED   Special Education
SI         Sensory Integration
SLP      Speech and Language Pathologist
SSDI     Social Security Disability Income
SSI       Supplemental Security Income
VR       Vocational Rehabilitation
WIC     Women, Infants and Children (food program)
504      Rehabilitation Act of 1973, Section 504

Common diagnoses:

ADD      Attention Deficit Disorder
ADHD    Attention Deficit Hyperactivity Disorder
ASD      Autism Spectrum Disorder
BD        Behavioral Disorder
CAPD    Central Auditory Processing Disorder/Deficit
CF        Cystic Fibrosis
CP        Cerebral Palsy
DB        Deaf-Blind
ED        Emotional Disturbance
FAS      Fetal Alcohol Syndrome
DD        Developmental Delay
ID         Intellectual Disabilities (formerly Mental Retardation)
LD        Learning Disability
MD       Muscular Dystrophy
MMR     Mildly Mentally Retarded
MR       Mental retardation (now referred to as Intellectual Disability)
ND       Neurobiological disorders
NLD     Nonverbal Learning Disability
OCD     Obsessive-Compulsive Disorder
ODD     Oppositional Defiant Disorder
OHI      Other Health Impaired
PDD      Pervasive Developmental Disorder
SB        Spina Bifida
SLD      Specific Learning Disability
SLI       Speech/Language Impairment
TBI       Traumatic Brain Injury
TMH     Trainable Mentally Handicapped
TS        Tourette Syndrome
VI         Visual Impairment

There are tons more acronyms, so if you have heard some that are not on this list check out this list of acronyms from NICHCY on the CPIR website. The more you understand the language, the more confident you will feel as you advocate for your child. Don’t be put off by the lingo – embrace it and soon you will be a pro.

Have questions? Send them to

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child.  As always, we welcome your comments and suggestions.

Updated November 2015.

Delays, disabilities and the law

Wednesday, February 13th, 2013

law-books-and-gavelWhether your child was a preemie or not, the good news is that our federal laws provide the means for your child to get help if he needs it. If your child needs early intervention, special education or related services he is not alone. More than 6 million children with delays or disabilities receive special education and related services in schools in the U.S. every year!

Children may need services for any number of reasons, including medical conditions related to prematurity. Children born preterm will often need extra help in a number of developmental areas. A recent 2012 study in Pediatrics noted that about 45% of children born with an extremely low birth weight were in special education programs at age 14 compared to about 10% of children born with a normal birth weight.

Know the language

Learning the lingo can be the hardest part of navigating the early intervention and special education system. You may feel as if you just got a new job but when you arrived at work on your first day, everyone was speaking a different language. You feel lost and often foolish asking basic questions, to which everyone already seems to know the answers. If your child has any kind of need, it is important that you know the language, or at least know the basics. Let’s start at the beginning.

What is IDEA?

IDEA is the federal law that governs how states provide early intervention and special education services. It is short for the Individuals with Disabilities Education Act. This law has been revised several times since it was first passed in 1975.  It spells out what your child is eligible to receive and what your state is responsible to provide. It is also a bit vague sometimes, which may leave details and interpretations up to individual states  and local school districts. However, on the whole, it is the roadmap for you if your child needs services, and it is essential for you to know that it is there to support your child.  Most parents will never need to refer to the actual law (officially referred to as Public Law 108–446 which is very, very long), but in case you ever have trouble falling asleep at night, you can find it here.

What is FAPE?

Did you know that in the United States, every child is entitled to a free and appropriate public education? This is commonly referred to as FAPE. According to IDEA, FAPE “means special education and related services that—(a) Are provided at public expense, under public supervision and direction, and without charge…” and are provided along with an Individualized Education Program (IEP) in an appropriate school setting (eg. preschool, elementary or secondary school). Learn more about IEPs in this post.

What is Special Education?

According to IDEA, special education is “specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability…” That is a powerful sentence – go back and read it again. Now, here is what it means…Special education can include an incredibly diverse set of services and is individualized to meet the needs of a specific child. This education might include specific classes, programs or services, such as tutoring, provide an aide or assistant, special adaptive or computer equipment, a different curricula, etc.  By the way, SPECIAL ED IS NOT A PLACE!  It is a specially designed instructional program, particular to your child’s needs, to enable your child to access the general curriculum at school. It can be put in place in your child’s classroom or anywhere else that is decided by the IEP team, as long as it is in the “least restrictive environment” or (LRE).  Wrightslaw has more information about the different options that may be included in the LRE.

What are Related Services?

Simply put, related services are all of the other services and/or therapies that a child may need. This may include (but is not limited to) speech and language, physical, occupational and recreational therapies, psychological counseling, guidance, social work, and transportation. Click here for details and examples of many related services. According to IDEA, in addition to special education, a child can receive “such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education.”

What are Supplementary Aids and Services?

IDEA says supplementary aids and services are “aids, services, and other supports that are provided in regular education classes, other education-related settings, and in extracurricular and nonacademic settings, to enable children with disabilities to be educated with non-disabled children to the maximum extent appropriate…” NICHCY (now CPIR) helps to explain this part of the law. They say: “Speaking practically, supplementary aids and services can be accommodations and modifications to the curriculum under study or the manner in which that content is presented or a child’s progress is measured. But that’s not all they are or can be. Supplementary aids and services can also include direct services and supports to the child, as well as support and training for staff who work with that child. That’s why determining what supplementary aids and services are appropriate for a particular child must be done on an individual basis.”

Visit the CPIR website to see NICHCY’s long list of possible services  that may be included under the umbrella of supplementary aids and services.

Take a breath – don’t get overwhelmed

This post contains a lot of information. But, the important thing to remember is that there are laws in place to help your child. As a parent, it is important to know about them and become informed. (You wouldn’t drive a car without first learning the rules of the road…right?) But don’t get discouraged. No one learns all of this overnight. Be patient with yourself.

In my next post, I will give you a long list of common terms and diagnoses to help you learn more of the lingo. So stay tuned.

Note:  This post is part of the new weekly series Delays and disabilities – how to get help for your child.  You can find all of the posts in the series, here.  As always, we welcome your comments and input.

A new blog series is here

Wednesday, January 16th, 2013

polio-poster-for-blog6Having a baby is a wonderful journey. It is filled with unexpected joys, moments of laughter, pride and boundless love.  But what happens if something goes wrong?  Or, if you suspect that something is not right with your baby or child?  What should you do?

The first thing to realize is that you are not alone. There are many parents out there who have been (or are) in your shoes. This blog series will give you the knowledge you need to help you deal with the unexpected. It will take you from the beginning (when you suspect or confirm that something is not going according to plan), right up through your baby’s childhood to help you navigate the choppy waters. Hopefully, with this “GPS,” you will feel in control of your journey.

If you are reading this blog post, you may suspect that something is not right with your baby or child. But, you may not want to take the next step because you are cautious about labeling your child, or you are simply afraid of the road that you may end up going down. Well-meaning grandparents, relatives or friends may tell you that your child is fine, marches to a different drummer, needs discipline or time. That may all be true, but you know your child best.  If you think that there is a chance that your baby is struggling or is delayed, then the best gift you can give your child is the help he needs to catch up – as soon as possible.

Time matters.

In many cases, babies and young children qualify for “early intervention services” based simply on a “developmental delay” and a more detailed diagnosis is not necessary to receive helpful services.  So, “labeling” your child may not be an issue at all. Try not to worry about what other people may think; just concentrate on getting your child help.

Why this blog?  Why March of Dimes?

The March of Dimes’ history is lengthy. Since 1938 we have been working tirelessly to improve the health of babies and children.  President Franklin Delano Roosevelt (FDR) founded the March of Dimes to defeat polio, a crippling disease that afflicted him. Success came in the form of a vaccine which protects children from polio to this day.  FDR was an outstanding advocate for the disabled, and knew all too well how a disability affects not only an individual, but also his/her family and society.

After polio, the March of Dimes went on to fund some of the greatest medical advances of the 20th century.  In fact, our work has been recognized with 13 Nobel Prizes (that could be its own blog series!).  But I digress…The point is that inherent in the March of Dimes is the goal to help babies and children live healthier lives. So, helping parents find resources for their children when things go wrong fits right in with our mission.

Why me?

As I write this blog, my personal story may unfold from time to time. I am a parent of two children – a boy and a girl – one with special needs. How I wish I had had a blueprint to follow when my daughter was a toddler experiencing “developmental delays!”  I was lost and frankly clueless. I took parenting classes, went to support groups and of course took my daughter to countless doctors. There was no Internet to “Google” a diagnosis or find support groups. Nevertheless, I muddled through, and amassed an enormous amount of information along the way.

Now, I want to share my knowledge with you so that you can be an informed parent and educated advocate for your child.  Additionally, as a Health Educator with a Masters degree in Health Science, I hope to bring a perspective that provides a combination of “I get it – I’ve been there” with a factual blueprint for you to follow.

My kids are both in their 20’s now, and I have to say I would not trade in this journey for the world. My special needs baby girl is a college graduate and despite the fact that she may always experience more bumps in her road than the “typical kid,” she has done remarkably well. She also sends a message to all parents with kids with “issues” to focus on their children’s gifts and strengths, and in time, you will see that they will blossom to be the best they can be. Never say never!

Check out the drawing of a polio victim holding a photo of FDR. The hard-to-see caption reads “We polios can fill almost any job.”  To me it speaks volumes. If an individual afflicted with polio could be our nation’s president for four terms, it is time to look beyond the disability and see the ability in everyone.

So, stay tuned for the upcoming series Delays and disabilities – how to get help for your child. It will appear every Wednesday. We will love to hear your comments and input!


Updated January 2017.