Posts Tagged ‘developmental delay’

April brings showers and IEP meetings

Wednesday, April 20th, 2016

worried-womanthmApril is a time when most school systems schedule meetings with parents to review all of the services their child is receiving and to establish a plan for the next school year. If you have a child with a developmental delay, disability or birth defect, he may be eligible to receive services. But often there is so much to learn that it can seem overwhelming.

As a parent, it is important to know the programs or services that may benefit your child. It is equally important to understand the system. Our blog series can help you sort it all out.

If your child is receiving services at school, it is a good idea to learn the difference between an IEP and a 504 plan. This post breaks it out into a chart and explains the vital differences. Another great place to go for clarity is Understood, a website dedicated to helping parents with children who have special learning needs.

In addition, we suggest you contact the Parent Training and Information Centers in your state, which offer free guidance to parents. Find your center and learn more about these vital resources.

If your child is still a toddler, he may be able to receive help through the early intervention system. Children are eligible up until their third birthday.

Have questions? Send them to AskUs@marchofdimes.org. We’re here to help.

 

Prematurity, disabilities and special education

Wednesday, April 6th, 2016

Preemi in NICU_smA mom recently wrote to AskUs inquiring about services for her child who was born 12 weeks early. Her child was now in elementary school, had a hearing impairment, and was falling behind in school. She wanted to know how she could help him.

Research has shown that children born prematurely may have difficulties with learning, experience developmental delays, or have a disability. But, whether your child was born prematurely or not, if he is evaluated and has one of 14 conditions, he may be eligible to receive special education and/or related services. Often, a “developmental delay” is enough for a child age three or older to be eligible for services. In order to qualify, a child’s educational performance must be adversely affected due to the disability.

The 14 qualifying conditions are:

Autism
Deaf-blindness
Deafness
Developmental delay (subject to each state’s specific criteria, and usually only up to age 9 and sometimes younger)
Emotional disturbance
Hearing impairment
Intellectual disability
Multiple disabilities
Orthopedic impairment
Other health impairment
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment

Next steps

You can request an evaluation (which is free to you) through the special education administrator of your school district or the principal of your local elementary school. Sending the request in writing is always a good idea – such as an email. Then, the school should contact you to set up an appointment for an evaluation.

Learn more about who will test your child, the steps involved in the process and what happens next, in this blog post. If your child qualifies for services, they could be life changing. The first step is to seek help and ask for the evaluation.

Find other relevant posts in our series on Delays and Disabilities: How to get help for your child.

Have questions? Send them to AskUs@marchofdimes.org.

 

Understanding intellectual and developmental disabilities

Wednesday, March 11th, 2015

Raising a child with developmental disabilities is a long road filled with challenges. It is best to have information and support to help you along the way.

Since March is National Intellectual and Developmental Disabilities Awareness Month, it gives us an opportunity to increase understanding about these disabilities, and to get the word out on support services that exist to help families. Equally important is learning how some disabilities can be prevented.

Developmental disabilities (DDs) include a wide group of conditions due to an impairment in physical, learning, language, or behavior areas. About one in six children in the U.S. has a developmental disability or a developmental delay.

DDs are diagnosed during the developmental period or before a child reaches age 18, are life-long, and can be mild to severe. They impact a person’s ability to function well every day.

Developmental disabilities is the umbrella term that includes intellectual disabilities (formerly referred to as mental retardation), which is an impairment in intellectual and adaptive functioning. For example, individuals with intellectual disability may have problems with everyday life skills, (such as getting dressed or using a knife and fork), thinking, understanding, reasoning, speaking and the overall ability to learn. See this fact sheet to learn more.

DDs also include: attention deficit hyperactivity disorder, autism, cerebral palsy, Down syndrome, fetal alcohol spectrum disorders, fragile X syndrome, hearing loss, vision impairment, muscular dystrophy, Tourette syndrome, learning disabilities, among other disorders.

Developmental disabilities may be due to:

• Genetic or chromosomal problems
Premature birth
Exposure to alcohol during pregnancy
• Certain infections during pregnancy

However, in many cases, the cause is unknown.

Some disabilities can be prevented

If you are thinking about becoming pregnant, learn how some disabilities and birth defects can be prevented.

Families need support

This blog series offers lots of resources – check out the Table of Contents for a list of what to do if you suspect your child may have a developmental delay or disability.  The series is updated every Wednesday.

You can also join our online community, Share Your Story, where parents of children with developmental delays and disabilities support one another.

In addition, here are a couple more resources:

The Arc: For people with intellectual and developmental disabilities – For more than 60 years, and with nearly 700 chapters in the U.S., the ARC provides supports and services for people with disabilities and for affected families.

AIDD – According to their website, the Administration on Intellectual and Developmental Disabilities works to advance the concerns and interests of individuals with intellectual and developmental disabilities through an array of programs funded under the Developmental Disabilities Act. AIDD is dedicated to ensuring that individuals with developmental disabilities and their families are able to fully participate in and contribute to all aspects of community life in the United States and its territories.

Toys glorious toys!

Wednesday, December 10th, 2014

playing with toysAt one time, parents did not have many options to find appropriate toys for a child with a disability or developmental challenge. Nowadays, it is possible to find just the right kind of toy for your child’s individual needs. She can play at her own level and be a very happy camper.

What child does not love toys? It seems to me that the word “toy” is synonymous with “child.” It is hard to separate the two. At this time of year, there is a seemingly endless variety of toys available. Yet, for parents of a child with special needs, it can seem hard to find toys that are appropriate for your child’s condition.

Fortunately, a simple internet search for “toys for kids with special needs” will yield multiple sites that feature toys for children with physical or cognitive challenges, speech and developmental delays, hearing or vision impairments, sensory disorders, issues related to autism and learning disabilities. You can find everything from sensory swings to board games with larger print. You will not be at a loss to find the right toy for your little one.

When searching for toys by age group, remember to keep your child’s adjusted age in mind if he was born prematurely. And, see this post for other tips on shopping for toys kids with special needs.

This year, let your fingers do the searching and find the perfect gift for your child with special needs. The hours of fun your child gets from a toy that is right for him will give you hours of joy!

 

Note: This post is part of the weekly series Delays and disabilities – How to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

More resources for meltdowns

Wednesday, May 14th, 2014

child having a meltdownMany parents commented on last week’s post about avoiding and handling tantrums and meltdowns in children. This week, I am referring you to a couple of sites for more info, both for young children and for older kids, too. I think you will find the information to be unique to children with special needs as their tantrums or meltdowns are usually related in some way to their underlying disorder. For example, a child with sensory issues may find getting dressed in the morning to be an uncomfortable experience (at best), which then triggers a meltdown. Likewise, the child with a math learning disability may find the very sight of a math text book extremely anxiety provoking. In other words, usually the behavioral outburst is related to the child’s delay or disability in some way. The key is to fully understand your child’s diagnosis and learn the triggers that will bring on a meltdown or tantrum.

Here is a good fact sheet which may help parents who have kids with a developmental delay or a disability.  NCLD offers info on how various learning disabilities or other diagnoses can affect behavior. I’ve even seen tantrum tracker apps which allow you to identify and track your child’s triggers and establish rewards for appropriate behaviors.

I hope one of these resources will help you to help your child. And remember, you are not alone!

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input. If you have questions, please send them to AskUs@marchofdimes.org.

A social skills tip for kids with special needs

Wednesday, February 5th, 2014

2-kids-playing-togetherOften a child with special needs has trouble relating to her peers. The developmental delay or disability may make it hard for her to communicate at an age appropriate level. Moments at daycare, preschool, on play dates or at mother/child play groups may bring stress and anxiety to a child (not to mention loneliness and isolation).

If this is the case for your child, don’t despair. She is not alone. Many children with special needs require help with socializing. It does not come naturally to them. And, if they have a speech or language delay, or another kind of communication challenge, they may feel very frustrated at not being able to talk and play with peers.

What can you do?

Here is a tip that has helped some children I know (including my own daughter):

Many pre-teens or young teenagers love spending time with younger children. Ask a teen from your neighborhood to come over and “pretend” to be a child again, and play with your child. Have her get down on the floor next to your child and build with blocks or Legos, play with dolls, have a tea party, or do whatever your child usually likes to do. (Try to avoid having them sit and watch videos or TV, as that is non-interactive.) Let the teenager engage your little one on your child’s level. Hopefully, your child will take the cues and respond back to her. A teen will be more patient with your child than a peer would be, making it a more successful and fun playtime.

It may take a while to facilitate a relationship, but the goal is for the skills learned with the teen playmate to transfer (in time) to that of children nearer your child’s age. And, the confidence gained at learning how to play and have a conversation will help her when she plays with a child her own age.

Start with short periods of time, such as 15 – 30 minutes. Gradually work up to longer periods. The goal is to get your child to slowly move from parallel play (playing beside another child but not interacting with him or her), to interactive play (when two children talk to each other and play together).

What about social skills classes?

Of course, formalized social skills classes or therapeutic play groups are also great ways to help your child learn to socialize, but often these classes are not convenient or are costly. If your child has an IFSP or an IEP, ask the team about creating specific goals to address social skills. Many times schools will offer social skills classes that include typically developing children and developmentally challenged children in one group. The social worker or facilitator guides the group with fun activities as social skills are learned and mastered.

Bottom line

With any kind of delay or disability, relating to peers can be very challenging. Try giving your child the opportunity to practice social skills with a pre-teen or teenager. The reciprocal skills learned in their play periods may boost your child’s confidence and skill level enough to be able to cross the threshold into successfully playing with her peers. It is certainly worth a try.

What has worked for your child? If you have a tip that was helpful, please share it.

Have questions? Send them to AskUs@marchofdimes.org.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the Categories menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.

How does your state define developmental delay?

Wednesday, October 9th, 2013

tired-toddlerFor children under the age of 3, your state’s early intervention system can provide services for a developmental delay. But all states do not define “developmental delay” the same way.

To find your state’s definition for babies and toddlers, visit NECTAC (the National Early Childhood Technical Assistance Center). They have a chart of each state with their Level of Developmental Delay Required for Eligibility. (You should know that diagnosed physical or mental conditions with a “high probability of resulting in developmental delay,” commonly referred to as “established conditions,” is also an eligibility category, but it is not listed in this chart.)

Alternatively, you can ask your local school or early intervention program to tell you the definition of “developmental delay” that’s used in your area.

Where can you find more info?

• The National Dissemination Center for Children with Disabilities, known as NICHCY, has been the go-to organization for all things pertaining to early intervention and special education. Although they lost their funding and closed their doors, their materials have been incorporated into the Center for Parent Information and Resources (CPIR) website.  I suggest that you visit the CPIR site to find tons of useful information you may need for your child’s future.  For example, to learn more about developmental delays, getting a developmental screening and evaluation, connecting with other parents, and finding out about other resources, see their page on developmental delays.

• If you have a baby or toddler and suspect that her development is not on track, learn more about developmental milestones.  Always discuss your concerns with your child’s pediatrician. In addition, you can contact your state’s coordinator of early intervention services directly and request an evaluation.

• If you have a child age 3 or older, see this blog post to learn how to initiate services and visit CPIR to understand the definition of developmental delay for kids 3+ as defined in the law.

• Connect with your PTI – Every state has a Parent Training and Information Center, known as the PTI. Some states have several. If you are looking to connect with state and local resources, or have questions about services and parent rights, talk to your PTI. Find the PTI for your state here. One of the “Type of State Organization” choices in the dropdown menu includes “Organizations for Parents.” Click that option, then your state. The PTI will be listed in your results.

Bottom line

There are many resources in place to help your child if she needs them. It is always better to be proactive then reactive. Don’t delay with delays.

Note: This post is part of the series on Delays and disabilities – how to get help for your child. See the Table of Contents to view all of the blog posts to date. As always, we welcome your comments and input.

Have questions? Send them to AskUs@marchofdimes.org.

 

Updated October 2015.

What is a Pediatric Neurologist?

Wednesday, September 18th, 2013

doctor-and-babyA Pediatric or Child Neurologist specializes in treating problems of the brain, spinal cord, nervous system and muscles, in babies and children up through young adulthood. The word “neuro” refers to nerves or your nervous system. (Nerves help to carry impulses between different parts and organs of your body.) A Pediatric Neurologist may be an important doctor in your child’s care if your child is experiencing particular challenges.

The American Academy of Pediatrics (AAP) says “Child neurologists often diagnose, treat, and manage the following conditions:

• Seizure disorders, including seizures in newborns, febrile convulsions, and epilepsy
• Medical aspects of head injuries and brain tumors
• Weakness, including cerebral palsy, muscular dystrophy, and nervemuscle disorders
• Headaches, including migraines
• Behavioral disorders, including attention-deficit/hyperactivity disorder (ADHD), school failure, autism, and sleep problems
• Developmental disorders, including delayed speech, motor milestones, and coordination issues
• Intellectual disability (formerly called mental retardation)
• Hydrocephalus.” (extra fluid surrounding the brain and spinal cord)

A Pediatric Neurologist is a highly qualified specialist who went to medical school and then completed at least 1 or 2 years in a pediatric residency, and then 3 or more years of advanced training in a neurology residency.  Most Pediatric Neurologists have attained board certification from the American Board of Psychiatry and Neurology.

What should you expect at your child’s first visit?

During a visit with a Pediatric Neurologist, the doctor will take a full history of your child which may include details of your pregnancy and the birth of your baby. The doctor will want to get a full picture of your child to be able to help him. The doctor will speak to you (the parent) and your child if he is old enough to understand and speak.

The doctor will examine your child and check his reflexes, nerves, balance, strength and motor function, and his overall senses. After a thorough examination, he will discuss next steps. He might prescribe additional tests to give him more information, such as an EEG (Electroencephalography) which measures brain wave patterns, and is helpful in diagnosing certain disorders.  Once all test results are in, the doctor will discuss his findings with you.  He will probably send a letter to your child’s Pediatrician or Family Doctor, with his findings and suggestions for future treatment.

It is always a good idea to bring a list of your questions with you when your child sees a doctor. It can be distracting to be caring for your child during the examination, which may make it easy to forget the questions that you had intended to ask.

Where can you find a Pediatric Neurologist?

If you have concerns about your child’s development, first speak to your child’s health care provider (a Pediatrician or Family Physician). Ask if a referral to a specialist, such as a Pediatric Neurologist, might be helpful. Your provider may recommend one or you can locate a Pediatric Neurologist by clicking on AAP’s physician locator.

Bottom line

If there is an issue or problem with your child’s development, it is always better to seek answers earlier rather than later. A Pediatric Neurologist may be a very important doctor in your child’s care.

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

Have questions? Send them to AskUs@marchofdimes.com.

What is a Developmental Behavioral Pediatrician?

Wednesday, September 11th, 2013

doctor-and-child2Is there a difference between a Pediatrician and a Developmental Behavioral Pediatrician? In a simple word – yes.

A Pediatrician is a medical doctor (MD) who is specifically trained to care for children (from birth through teen years). If you have a baby, child, or a teenager, you have probably had her seen by a Pediatrician for her healthcare needs. This would include well-care visits as well as sick visits.

But if your child has any kind of need beyond the “typical” health issues common for her age, you might wish for her to see a pediatric specialist. A Developmental Behavioral Pediatrician (DBP) is a Pediatrician with advanced specialty training in the physical, emotional, behavioral and social development of children.

The American Academy of Pediatrics (AAP) says “Developmental-behavioral pediatricians are medical doctors who have completed
• Four years of medical school
• Three years of residency training in pediatrics
• Board certification in pediatrics
• Additional subspecialty training in developmental-behavioral pediatrics
In 2002, the American Board of Pediatrics began certifying developmental-behavioral pediatricians via a comprehensive examination process.”

When should your child see a Developmental Behavioral Pediatrician?

If you have concerns about your child’s development in any area – social, emotional, behavioral or developmental – you should ask your child’s health care provider about consulting with a DBP. Often a Developmental Behavioral Pediatrician works with a team of pediatricians or pediatric health care providers. This team approach can provide a more in-depth perspective for a parent, which will ultimately help your child be the best that she can be.

You may benefit from having your child see a DBP if your child has (or you think she may have):

• Delayed speech and/or trouble understanding language
• Delayed motor skills (crawling, walking, eating, riding a bicycle)
• Poor social skills
• Trouble sleeping (including bedwetting)
• Trouble feeding or eating
• Sensory sensitivities
• Trouble at school (paying attention; learning to read, write or do math)
• Cerebral Palsy
• Attention Deficit Hyperactivity Disorder (ADHD) or ADD (without hyperactivity)
• Learning disabilities
• Anxiety disorder
• Depression
• Tics or Tourette Syndrome
• Spina Bifida
• Autism Spectrum Disorder
• Intellectual disability
• Other chronic conditions, serious illnesses, or complications due to prematurity

A Developmental Behavioral Pediatrician may suggest additional testing or input from other pediatric specialists or therapists. Then, she will review the results and take all the different pieces of the puzzle and put them together to make a plan of action. The result is a comprehensive evaluation with treatment recommendations which will give your child the best chance at making progress.

The AAP has a great one-page sheet that describes all of the ways that a DBP can help you and your child.

How do you find a DBP?

To find a Developmental Behavioral Pediatrician near you, visit AAP’s physician locator or ask your child’s health care provider for a referral.

Bottom Line

Often a visit with a Developmental Behavioral Pediatrician will help to clarify complex issues. If your child is having difficulty in an area, it may be very beneficial to gain the insight from another pediatric specialist.

Note:

This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.

Have questions? Send them to AskUs@marchofdimes.org.

What are hippotherapy and therapeutic riding (THR)?

Wednesday, July 3rd, 2013

horse-1For children with special needs, horseback riding may be very therapeutic. It may help your child improve socially, cognitively, behaviorally, physically and emotionally. And, to top it off, it can be loads of fun!

Hippo is the Greek word for horse. Hippotherapy and therapeutic riding (THR) are terms that are commonly used interchangeably to describe therapy that is provided with the help of a horse. But, there are some differences between the two.

What is hippotherapy?

The motion of the horse as it walks provides sensory input to the child. The horse’s movement is rhythmic and repetitive and closely resembles the normal gait (walk pattern) of a person. This sensory input movement is thought to help your child feel and learn the motion that is needed to learn to walk. Usually a licensed professional therapist provides OT, PT or ST as the child is on the horse. A child may even do certain exercises while lying down on the horse. In essence, it is therapy given while on a horse. The horse handlers are responsible for controlling the horse. Your child is not learning how to independently ride a horse in hippotherapy.

What is therapeutic riding (THR)?

Therapeutic riding is different from hippotherapy because THR focuses on riding skills and therapeutic activities. For instance, special tasks are given to your child to work towards certain goals (such as learning how to steer the horse, learning right from left, communicating with the horse handlers or “side walkers,” etc.). Your child slowly learns specific riding skills. Your child may or may not be in primary control of the horse depending on his level of skill and expertise.

Whatever the differences, the similarities are clear in that the use of a horse is key in working towards achieving functional goals.

What is it like?

When my daughter was younger, I took her to therapeutic riding sessions once a week. She sat on the horse and needed to sit up straight, hold the reins and pull on them to make the horse go in a certain direction. She needed to give walking commands to the horse (“Walk on Toby”) and listen to the instructors by her side. At first I was nervous as my little one sat atop this huge horse – she was speech delayed and often needed more time to process what was said to her. Her muscle tone was relaxed so working on her posture was not an easy task. But, I sat on the sidelines and watched quietly.

In time, I saw my daughter become more confident in her speech and movements as she directed the horse to move ahead, slow down or stop. Her posture improved as the sessions became more complicated – such as reaching for hoops or picking up objects alongside the rink while she kept the horse moving forward. She had conversations with her horse “side walkers” and formed a special bond with the horse, Toby.

My niece, who has autism, absolutely loves her riding sessions. Her ability to understand verbal commands has improved considerably since starting her therapy. She shows a sense of confidence and excitement when she arrives at the stable that she does not show in other environments. It is hugely evident from the smile on her face that she is thoroughly enjoying herself. She also displays a level of patience and control while on the horse that is not seen in other circumstances.

Where can you find hippotherapy or THR?

To learn more about hippotherapy, contact the American Hippotherapy Association. Click on “find a facility” in their drop down menu to locate a stable near you. The AHA maintains hippotherapy standards for programs and professionals.

To learn more about therapeutic riding, contact the Professional Association of Therapeutic Horsemanship International (PATH Int’l). Click on “find a center” to locate a stable near you. PATH establishes the industry standards for program safety as well as instructor training and certification.

Usually, a program accepts children as young as 4 years of age but rules may vary from one organization to another. Likewise, the cost of a program varies widely, although many organizations offer financial assistance. Be prepared to encounter a waitlist as these programs are usually immensely popular.

Is hippotherapy or therapeutic riding medically beneficial?

There aren’t a lot of robust studies, but I took a look at some of the more recent research as it pertains to children with developmental delays, autism and cerebral palsy (CP).

One study found that therapeutic riding may lead to improvement in gross motor function in developmentally delayed children “and that these improvements remain once therapeutic riding ceases.” Another study found that children with autism had improved behaviors (such as social motivation and less inattention, distractibility and sedentary behaviors). A review of 8 studies found that “riding therapy is indicated to improve postural control and balance in children with CP,” while another review found that both hippotherapy and THR have positive effects on gross motor function on children with CP. But, there are also studies that did not show definite results. Some had sample sizes that were too small to draw conclusions, or simply did not find any benefits for kids with CP.

Bottom line

More studies are needed to back up the benefits to which many parents, clinicians and even the patients themselves attest. But, aside from the studies, it may be worth it to look into any therapy that might benefit your special needs child. What works well for one child may not help another, and vice versa. Often you have to try more than one therapy to see what helps your child. And, often it is a combination of therapies that helps a child take off and make progress.

Have you tried any kind of horseback riding therapy for your child? Please tell us about your experiences.

Have questions? Send them to AskUs@marchofdimes.org.

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. Go to News Moms Need and click on “Help for your child” on the menu on the right side to view all of the blog posts to date. As always, we welcome your comments and input.