Posts Tagged ‘disabilities’

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 AskUs@marchofdimes.org

Transitioning from the school year to summer

Wednesday, June 8th, 2016

Family walking outdoorsIf your child has special needs, the transition from the structure of the school year to that of a summer schedule can be very difficult. Even if your child is not yet in school, he may be in an early intervention program, making him used to a certain predictable routine from September to June. Upsetting this applecart to move into a different environment (new therapists, buildings or even a summer camp) can throw your child off kilter. Add to that the thought of taking a family vacation, and the whole idea of facing these transitions can give you a headache.

Here are some posts to help you get through it all. The goal is to help you and your child enjoy these summer months.

Accommodations help vacationers with special needs lists different accommodations that hotels and public places offer individuals with special needs.

Vacationing with your child with special needs offers tips on how to make this HUGE transition less scary for your little one. With some preparation beforehand as well as on the road, the whole family can enjoy time together. This post provides resources on places to go, the golden rules of travel, and the all-important list of time-fillers. A must read.

How to find camps for children with special needs is a post that lists resources by camp specialty (based on a child’s condition or disability) and location. It is a great start if you are thinking you might still want to place your child in a camp this summer. Better yet, it is a springboard for preparing for next year.

Hopefully these posts will get you started on your way to a successful summer experience for your kids and you. If you have any tips to share, please do!

Find many other posts on Delays and Disabilities: How to get help for your child.

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

Pragmatics – helping your child learn the rules of social language

Wednesday, May 18th, 2016

kids-playing-with-a-ballIf you have a child with a developmental or speech delay, you may have heard the term “pragmatics.” It refers to the use of language in a social setting – with friends, at school, and at home. Often, it is not enough that a child learns grammar and vocabulary in order to communicate. He also needs to understand how these words come together in social language.

A child struggling with pragmatics may use few words to express himself or seem disorganized in the way he speaks. He may have a hard time taking turns in conversation, or make inappropriate comments. As he gets older, he may be able to learn to read (sound out and pronounce words), but may not understand what he is reading. Usually a difficulty with pragmatics is not diagnosed until a child is at least four or five years old, and sometimes it is not identified until years later.

The following information is from the American Speech-Language-Hearing Association:

Pragmatics involve three major communication skills

Using language for different purposes, such as

  • greeting (e.g., hello, goodbye)
  • informing (e.g., I’m going to get a cookie)
  • demanding (e.g., Give me a cookie)
  • promising (e.g., I’m going to get you a cookie)
  • requesting (e.g., I would like a cookie, please)

Changing language according to the needs of a listener or situation, such as

  • talking differently to a baby than to an adult
  • giving background information to an unfamiliar listener
  • speaking differently in a classroom than on a playground

Following rules for conversations and storytelling, such as

  • taking turns in conversation
  • introducing topics of conversation
  • staying on topic
  • rephrasing when misunderstood
  • how to use verbal and nonverbal signals
  • how close to stand to someone when speaking
  • how to use facial expressions and eye contact

If you are concerned about your child’s use of language, speak with his health care provider. It may be beneficial to have a specialist, such as a speech and language pathologist, test your child and provide appropriate therapy. If your child is three years old or older, he may qualify for services through your local school district. See this post to learn how to ask for a free evaluation.

To help your child use language appropriately in social settings, see the American Speech-Language-Hearing Association’s Pragmatic Language Tips.

To learn more about social communication disorders, see this article by Understood.

Have questions?  Send them to AskUs@marchofdimes.org

 

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.

 

Help improve health policies where you live

Wednesday, March 30th, 2016

Mom calming crying babyDo you live in Colorado, Wyoming, Utah, North Dakota, South Dakota, Montana, Minnesota or American Samoa?

Have you had difficulties getting health care services for yourself or your child?

If so, we’d like to hear from you.

March of Dimes is working with the American Academy of Pediatrics to better understand the issues that families face getting and paying for health care for their child, particularly children with special health care needs or disabilities. We know that some families are having problems finding the right doctor, or getting a referral, or having needed services denied. We know that these problems may affect having enough money for your family or being able to maintain a job.

Please complete this short survey.  You will be helping policy makers understand important issues – a first step in creating better health systems for everyone. You will not be asked for any identifying information, and your responses will be completely confidential. By sharing your knowledge and experiences, you can make a difference in improving health policies in your state.

Help the March of Dimes and the American Academy of Pediatrics learn more about your challenges.

 

Getting guilt-free time off

Wednesday, February 17th, 2016

nine o'clockFew parents can afford the kind of support or home care that would truly provide the respite you need to recharge your batteries. Therefore, you need to be creative in trying to build in snippets of time off.

Parenting a preemie, a child with a birth defect, developmental delay or disability is all-consuming. The physical and emotional toll it takes on a parent can be so heavy that you may wonder how you will go on if you don’t get a break.

Here is what used to work for me:

I decided that every Wednesday was my day off. On that day, I would not make a bed, empty the dishwasher, do laundry (unless absolutely necessary), book doctor or therapy appointments, or otherwise do anything that I usually did on the other six days of the week. Returning non-emergency, non-important emails or phone calls could wait until the next day. After all, I was “off duty” – the usual daily chores could wait. I did not feel guilty that beds were unkempt, because after all, I was off duty. I did not care that if someone rang my doorbell, the house was not tidy because (you guessed it) I was off duty. Dinner was simple – leftovers or take out, on paper plates please! It was my day off so I didn’t have to cook or do dishes. All I had to do that day was take care of my children and myself, which was enough. Wednesday was the day I gave myself a free pass.

It may sound silly or overly simple, but it worked for me. I looked forward to that day in the middle of the week when I didn’t have to do all the things that I usually did on the other days of the week. It was a little way for me to give myself a reprieve without feeling guilty. After all, with most jobs, you get time off to recharge your batteries and become refreshed. Parents raising kids with special healthcare needs must have “time off,” too, even if they can’t physically get away.

Here is another approach I used when my kids got a bit older. I would tell them that at 9 pm I “turn into a pumpkin” (a la Cinderella). That meant they had to have homework done, backpacks packed, and questions asked because I was about to go into my room to unwind (usually by watching a TV show). I can still hear them telling each other “We better show mom this (whatever it was) fast because it is almost pumpkin time!” It was a way for me to know that my day had an end (sort of), and a way for them to respect that Mom needed time to relax. It was amazing how quickly everyone got used to the routine. I even got a night shirt with the words “OFF DUTY” on the front! (A little extra emphasis can be a good thing…haha!) The bottom line is that this method worked well for my family, and especially for me.

Let’s face it, your kids need you, and they need you to be fully functional. If you can’t get someone to help give you a break, maybe my little day-off scenario and “pumpkin” deadline will work for you.

If you have a method of how you get re-charged, please share.

 

Note: The mini-series on Delays and Disabilities has lots of info to help you if you have a child with special needs. Please feel free to comment and make suggestions. If you have questions, send them to AskUs@marchofdimes.org.

 

Wrapping up birth defects prevention month

Wednesday, January 27th, 2016

Baby girl smilingWe’ve had a busy month spreading the word about birth defects. If you’ve missed some posts, here is a wrap up of messages. More posts will be coming each week, so stay tuned.

Birth defects are common.

  • Did you know that every 4.5 minutes, a baby is born with a birth defect in the U.S.? That’s 1 in 33 babies or more than 120,000 babies each year.
  • Birth defects are health conditions that are present at birth. They may affect how the body looks, works, or both.
  • Common birth defects include heart defects, cleft lip and cleft palate, Down syndrome and spina bifida. Some birth defects are on the rise for unknown reasons – like gastroschisis.
  • Birth defects are the leading cause of infant deaths in the first year of life in the U.S.
  • Birth defects are critical. They are the leading cause of death and disability in children across the world.

There are thousands of different birth defects, and about 70 % of the causes are unknown.

  • Birth defects are thought to be caused by a complex mix of factors including our genes, behaviors and environment.
  • Birth defects are costly. The CDC says, each year, total hospital costs for U.S. children and adults with birth defects exceed $2.6 billion.
  • Many birth defects are discovered after the baby leaves the hospital or within the first year of life.
  • Babies who survive and live with birth defects are at an increased risk for long-term disabilities and lifelong challenges.

Not all birth defects can be prevented, but some can.

  • Women can take steps toward a healthy pregnancy. Taking 400 micrograms of folic acid during childbearing years can help to reduce the risk for birth defects of the brain and spine called neural tube defects (NTDs).
  • Pregnant or trying to conceive? Here are steps you can take to help prevent birth defects and have a healthy pregnancy.
  • Avoid alcohol, cigarettes and “street” drugs during pregnancy. Talk to your provider before you start or stop taking any type of medications.
  • Prevent infections during pregnancy – wash your hands often and well.
  • Make sure your vaccinations are up to to date.
  • Get chronic medical conditions under control before pregnancy. Diabetes and obesity may increase the risk for birth defects.
  • Collect your family health history and share it with your healthcare provider.

Share and connect

Birth defects can happen to any family. Share and connect with others on our online community Share Your Story.

Have questions? Email our Health Education Specialists at AskUs@marchofdimes.org.

 

January – doldrums? extra struggles?

Thursday, January 14th, 2016

No matter how you slContemplative womanice it, January always seems to be a tough month for people. After the holidays, it is hard to get back into the old routine. Somehow, the leftover cookies and sweets still linger, making it extra hard to get back on track.

Getting back in the swing of things is hard for parents. If this is how you have been feeling, you are far from alone.

But, if you are struggling, imagine how lost your child with special needs may be feeling! Getting your child to transition back to his “old normal” is easier said than done. If your child is experiencing a slight backward step, you might want to read these posts: Adjusting to life after the holidays gives tips on surviving “re-entry” as I call it, and this post includes suggestions on how you can help your child adjust back to your old routine.

Note:  The mini-series on Delays and Disabilities has lots of info to help you if you have a child with special needs. Please feel free to comment and make suggestions.

 

RDS and BPD – breathing problems in preemies

Wednesday, October 28th, 2015

NICU sign 1If your baby was born prematurely, you are probably concerned about his lungs. A baby’s lungs are not considered to be fully functional until around 35 weeks of pregnancy. If your baby was born before that, it is possible that he may struggle with breathing.

 

RDS

A serious breathing problem called respiratory distress syndrome (RDS) is the most common illness in the NICU. But, the good news is that due to medical advances, babies with RDS have a 99% survival rate.

Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by half.

Babies with RDS also may receive a treatment called C-PAP (continuous positive airway pressure). The air may be delivered through small tubes in the baby’s nose, or through a tube that has been inserted into his windpipe. As with surfactant treatment, C-PAP helps keep small air sacs from collapsing. C-PAP helps your baby breathe, but does not breathe for him. The sickest babies may temporarily need the help of a mechanical ventilator to breathe for them while their lungs recover. Learn more about the differences between C-PAP and a ventilator, as well as causes, symptoms and treatment of RDS.

BPD

BPD (bronchopulmonary dysplasia) is a chronic lung disease common in preemies who have been treated for RDS. These babies may develop fluid in the lungs, scarring and lung damage. Medications can help make breathing easier for them. Usually babies with BPD improve by age 2 but others may develop a chronic lung condition similar to asthma. Learn about asthma, including questions to ask your child’s health care provider and how to help your child understand his breathing problems.

Even though the outlook for babies born prematurely has improved greatly, many babies still face serious complications and lasting disabilities. Many March of Dimes grantees seek new ways to improve the care of these tiny babies, while others strive to prevent premature delivery.

Have questions?  Email or text AskUs@marchofdimes.org. We are here to help.