Archive for the ‘Help for your child’ Category

Honoring parents with angel babies

Wednesday, October 15th, 2014

yellow butterflyThe loss of a baby is heart wrenching.  As today is Pregnancy and Infant Loss Awareness Day, I want to take a moment to honor those parents who have angel babies. Most people cannot even imagine being in their shoes for an instant, yet alone having to live a day-to-day existence without the baby they continue to love.

The loss of a baby touches so many people in profound and long lasting ways. No two individuals grieve in exactly the same manner. The mother may grieve differently from the father. Children who were expecting their sibling to come home from the hospital experience their own grief as well. Even grandparents and close friends may be deeply affected. The ripple effects from the loss of a baby are widely felt.

The March of Dimes is committed to preventing premature birth, birth defects and infant mortality. It is our hope that through continued research, we will have a positive impact on the lives of all babies so that fewer families will ever know the pain of losing a child.

If you or someone you know has lost a baby, we hope that our online community, Share Your Story will be a place of comfort and support to you. There, you will find other parents who have walked in your shoes and can relate to you in ways that other people cannot. Log on to “talk” with other parents who will understand your grief. We also have bereavement materials available free of charge. Simply send a request to AskUs@marchofdimes.org and we will mail them out to you.

Please know that the March of Dimes is thinking of you today and every day.

Flu is dangerous for certain people

Wednesday, October 8th, 2014

You’ve all heard it: get your flu shot. It is on our blog, website, and we just finished a twitter chat with the CDC, FDA, AAP, doctors, and other notable tired-toddlerorganizations. Everyone agrees that getting the flu shot is the single best form of protection from flu.

Is it really that important?

Yes. Flu can be life-threatening. Certain groups of people are at higher risk of serious complications from flu:

• Children younger than 5 years of age and especially kids younger than 2 years old.

• Children of any age with long-term health conditions including developmental disabilities. See this post to learn which high risk conditions are included.

• Children of any age with neurologic conditions. Some children with neurologic conditions may have trouble with muscle function, lung function or difficulty coughing, swallowing, or clearing fluids from their airways. These problems can make flu symptoms worse. Learn more here.

• Pregnant women. They are at high risk of having serious health complications from flu which include miscarriage, preterm labor, premature birth or having a low-birthweight baby. In some cases, flu during pregnancy can even be deadly. By getting a flu shot during pregnancy, your baby will be protected up until six months of age.

•  Adults older than age 65 (attention grandparents!).

When should you talk to your provider?

According to the CDC, you should seek advice from your provider before getting a flu shot if you are allergic to eggs, have had Guillain-Barré Syndrome (GBS), have had a prior severe reaction to the flu shot or to an ingredient in the shot, or are not feeling well.

Bottom line- get your flu shot

Read my post Test your flu knowledge – true or false? to learn the truth about flu.  Knowledge is powerful.

If you have questions, speak with your health care provider or visit flu.gov .

 
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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

BRACE yourself – The ShareUnion message

Wednesday, October 1st, 2014

BRACE yourself poseBRACE yourself for your new normal. This is the acronym that keynote speaker Kevin Bracy imparted to dozens of women at the 10th annual ShareUnion in Phoenix, Arizona. ShareUnion (SU) is the annual gathering of members of Share Your Story, the online community of the March of Dimes, where parents reach out and support one another. This year’s theme was “Finding your new normal.”

The well-known motivational speaker inspired the women who face daily struggles associated with prematurity, infant loss, or raising a child with a developmental delay or disability. The speaker himself is no stranger to loss or the long term effects of prematurity. He and his wife, Jessica, have a 13 year old son who was born at 28 weeks gestation and suffers from significant challenges. Nine years ago, the Bracys lost a son who was born at just 22 weeks gestation. They also have a 21 year old daughter who is healthy. The Bracys embody the mission of the March of Dimes. Jessica has been a Share Your Story member for years, and sent her positive vibes to the group via her husband.

Bracy’s messages are universal, but they are best embraced by anyone who is faced with a constant struggle. His first message, BRACE yourself, (while crossing your arms over your chest with your hands in fists) is meant to help lift you up when you are feeling overwhelmed.

BRACE yourself stands for:

B – Be good to yourself – Be kind to yourself.
R – Regroup and refocus when you need to, especially when your life seems to be getting out of control.
A – Attitude – Always be attitude conscience. Let the “inner you be expressed by the outer you.”
C – Cause centered – Focus on the important people and things in your life.
E – Embrace change. Don’t fight it. Adapting will make your life better.

Accept, adapt and embrace your new normal. Don’t “go through” your challenges, “grow through them” Bracy says. For many SU moms, this advice resonated as they face the daily struggles of caring for a child with special needs as well as themselves and their families.

Mouth over mind – Bracy’s 2nd message

“When the mind goes negative, the mouth goes positive” Bracy explained. He recounted that the great fighter Muhammad Ali would talk out loud to himself before a fight. Ali would say he was the best and he was going to win. He spoke out loud to himself because he believed that his mind could talk his body into greatness. Bracy recommended that when your mind starts thinking of negative scenarios, quickly talk out loud, positively, and it will change the direction of your thoughts. Your mind can’t be negative if you are talking positively. By speaking out loud, you switch off your negative thoughts. Bracy then proved his point through a group exercise. Powerful stuff.

For families affected by prematurity, infant loss, disabilities or birth defects, Bracy’s messages were uplifting and inspiring. “Win the day, one day at a time” he concluded. Judging by the standing ovation he received, everyone became a winner that day.

 

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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Good-bye NICHCY. Hello CPIR.

Wednesday, September 24th, 2014

waving goodbye or helloLike most people, I am resistant to change. Once I get used to something, I am irked when it is re-arranged or changed, or worse, eliminated. But, today I am writing about a change that made me unhappy at first, but in the end, I feel good about.

In many of my blog posts, I have directed parents to NICHCY (the National Dissemination Center for Children with Disabilities), where hundreds of helpful articles on early intervention, special education, disabilities and the law can be found in an easy to read format. The bad news is that in less than one week, NICHCY’s website will be closed. The good news is that most of the information has been moved to CPIR – the Center for Parent Information and Resources. Thankfully, the valuable information that NICHCY has created over the years will still be accessible on the CPIR site.

I recommend that you go directly to the CPIR page, Quick Find/NICHCY Resources, which links you directly to a roadmap of NICHCY’s topics. You can also access information through their alphabetical listing.

NICHCY’s specialty was helping parents access and navigate the early intervention and special education systems. They have important information on creating an IFSP and IEP. They also offer information on the IDEA (Individuals with Disabilities Education Act) which is the law ensuring that children with delays or disabilities receive a free, appropriate education. You will also find fact sheets on specific disabilities as well as materials in Spanish.

So, as sad as I am to see NICHCY go, I am thrilled that this information is not lost, and it will continue to be kept current by the good folks at CPIR. This is the kind of change that I can bear quite easily.

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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Heavy backpacks hurt- how to lighten the load

Wednesday, September 17th, 2014

backpacks-150x150Pain and strain. Did you know heavy backpacks can be the cause of posture and back problems? Many children with special needs have musculoskeletal issues. A very heavy backpack may add additional challenges to an already sensitive child.

Yesterday, on my way to work, I noticed a group of kids headed for the bus stop. I could not help but observe their gigantic backpacks, full to the brim, and noticeably heavy. One little girl was struggling to stay upright as she shifted the weight of her backpack from left to right, in an effort to hurry along and catch her bus.

The daily carrying of heavy packs can cause muscle strain and pain, and may lead to back, shoulder or neck injuries. The American Occupational Therapy Association (AOTA) has designated today as National School Backpack Awareness Day. They are holding events in different areas of the country. Even if you don’t make it to a backpack event, it is well worth your time to read AOTA’s tip sheet on Backpack Strategies for Parents and Students.

AOTA offers strategies on how to lighten the load, pack the backpack properly and wear it correctly. For instance, did you know that the pack should not weigh more than 10% of your child’s weight? (If your child weighs 80 pounds, the loaded pack should not weigh more than 8 pounds.) Also, you can make hoisting a pack easier by packing the heaviest items close to your child’s back. Using both shoulder straps is also key to minimizing injuries. Learn more helpful tips on their sheet.

So, help your child “pack it light and wear it right.” You could well avoid injuries and pain with a few simple changes.

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 menu on the right side to view all of the blog posts to date.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Table of contents for the delays and disabilities series

Wednesday, September 10th, 2014

If you are new to this series, or if you want to catch up on posts you may have missed, this is a good way to see all the posts in the series. They are grouped by topic to help you navigate your way.

Table of Contents

Why this blog series?
A new blog series is here

How to get early intervention and special education services
Babies and toddlers:

Understanding developmental milestones and delays
Preemies- adjusted age and delays
Early intervention for babies and toddlers
What is an IFSP?
Guest post from the CDC on early intervention
Don’t delay with delays
How does your state define developmental delay?

Kids ages 3 and older:

Turning 3 – the leap from early intervention to special ed
Early intervention and special ed for children ages 3 and older
What is an IEP?
What are related services?
IEP or 504 – that is the question!
IEP reviews in April
IEPs on TV
April is IEP month
What is Prior Written Notice or “PWN?”
IEPs and LREs – the nitty gritty
An easy way to find resources for kids with special needs
Summer programs for kids with special needs
Delays, disabilities and the law
Learning the lingo
Words and terms – a whole new world
Changing a program for a child with special needs
What is peer-reviewed research?
Keeping track of your child’s records

Pediatric medical specialties

What are pediatric specialties?
Finding pediatric specialists
What is a Developmental Behavioral Pediatrician?
What is a child psychologist?

Therapies and Treatments

What is physical therapy or “PT”?
What is occupational therapy, or “OT”?
What is speech therapy?
What are hippotherapy and therapeutic riding (THR)?
What are recreation services?
Kids with challenges zoom on souped up kiddie cars

Sensory issues

Sensory difficulties in children
Everyday tips for dealing with sensory special kids
Help for sensory issues
Fireworks are not fun for kids with sensitive hearing
Sensory friendly malls

Understanding the diagnosis

Preemies and hearing loss
Did you hear me? What is Auditory Processing Disorder (APD)?
What are learning disabilities (LDS)?
LDs – What they ARE and are NOT
What is dyslexia?
What is dyscalculia?
What is dysgraphia?
What is dyspraxia?

Coping – day in and day out

Medication mistakes are common
It’s good – no, great – to read to your baby
Avoiding and handling tantrums
More resources for handling meltdowns
Positive reinforcement – the power of one M&M’s® candy
Positive reinforcement – fortune cookie advice

Flu can be serious for kids with special needs
Can sleep affect your child with special needs…or you?
A social skills tip for kids with special needs

Apps for math LD and other disabilities
There’s an app for that (for kids with learning challenges)

Getting through transitions, holidays, vacations and disasters

A transition tip
Bracing for the holidays
Holidays :) or :(
Adjusting to life after the holidays
Let it go! Let it go! Let it go! (an inspirational holiday poem)
Vacationing with your child with special needs
Accommodations help vacationers with special needs
Re-entry: life after vacation
Summer to September
From summer to school – the big transition
Back to school is hard on kids and PARENTS!
Shopping for toys for kids with special needs
Preparing for disasters when you have a child with special needs

Surviving and thriving – Your child with special needs, your other children, and YOU

Special moms need special care
Caring for the caretaker – put on your oxygen mask
Caring for the siblings of a child with special needs
Do siblings of children with disabilities need help?
Laughter helps your body, mind and mood
It’s a marathon, not a sprint

You can also see all of the blog posts by clicking on Help for Your Child under “Categories” on the menu. Scroll down to read the blog posts in reverse chronological order. If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Back to school is hard on kids and PARENTS!

Wednesday, September 3rd, 2014

back to schoolIt is back-to-school time… for parents. Yes, I know your kids are the ones who go to school, but going back to school is a feat for parents, too.

First, you need to buy all the school supplies (if you have not misplaced the list), including the all too important backpack. Then, there are the school clothes, shoes, sneakers, boots, and sports equipment. If your child has special needs, you may have even more items to buy. Depending on the age of your child, there may be lockers to decorate and books to purchase. Shopping and gathering all these items is time consuming and expensive. The entire process can be exhausting and stressful. It is so important to try not to let all of these tasks get the better of you, and to keep the focus on your child in a positive way. If you are stressed out, your child will be, too.

Before your child starts school, there are fears of the unknown. The anxiety may keep your little one up at night. Then, once your child starts school, there is the huge adjustment that comes with getting used to a new teacher, new faces in the classroom and a new routine. Little things as simple as a different kind of chair, lights, sounds and smells may bother your child and cause upset. Getting yanked into a whole new environment can be incredibly unnerving to any child, but it is especially difficult for a child with special needs.

Adding to the overall stress of returning to school, is the challenge of figuring out what actually happens during the school day. One of my kids had a teacher who told parents “I will only believe half of what your child tells me about you, if you believe half of what your child tells you about school.” At first I found it somewhat alarming, but then I realized it reminded me of the game of telephone. The more a message gets passed on, the more the message changes.

As your child becomes acquainted with the new school routine, he may come home and tell you information that is slightly incorrect. Or, he may tell you absolutely nothing. (Often, just getting through a school day from beginning to end is a monumental feat for a child with special needs, and once home, the last thing he wants to do is talk about his day. Rather, quiet time is the preferred escape.) If you need to know specific information, consider emailing the teacher or the Class Parent because your child may be too overwhelmed to tell you the information you seek. And, if he does talk about his day, you may not get all the facts you need to answer your question.

If you think that you are the only parent who finds back-to-school tasks stressful and overwhelming at times, you are not alone. But, the important thing to remember is that as stressed as you are, your child is much more stressed. Try to keep a cheerful perspective and know that in time your child will adjust to the new routine, and so will you. With a little luck, you may both grow to love this new year, too.

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 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.

Accommodations help vacationers with special needs

Wednesday, August 27th, 2014

mom and daughter in poolGetting a change of scene, even for a day, is GOOD for you and your child with special needs. And now, it is getting easier to do.

I have blogged about the importance of taking time for yourself, and have posted tips on traveling with a child with special needs. But, often parents of kids with special needs don’t go on vacation as a family because they feel that their child’s special needs may not be met at hotels, restaurants or in theme parks. But, the chronic stress associated with your daily life can catch up with you; it is not good physically, emotionally or mentally for you to never re-new your energy. Here is some good news if you are thinking of spending a day at a theme park or going away for the Labor Day weekend.

My two grown kids and I just got back from a vacation where we visited several theme parks. We had a fabulous time going on rides, swimming at the hotel pool, and just spending time together. The breaks from our usual routines were much needed, and we all returned home with renewed energy and enthusiasm.

At the various theme parks we visited, I was heartened to see accommodations for individuals with special needs. “Family Restrooms” are common, where you can take your child into a restroom in privacy, comfort and safety. Ramps or special entrances enable buildings with attractions to be wheelchair-accessible. Amphitheaters are outfitted with numerous seating sections for groups that have a family member in a wheelchair. Sign language interpreters accompany certain shows, and braille can be found on park maps. Many theme parks have staff especially devoted to making sure that guests with disabilities or special needs are accommodated and welcomed. Often sports stadiums or ball parks have days especially dedicated to individuals with disabilities.

At many of the restaurants we went to, gluten free menus were prominently displayed. At our hotel, we observed accommodations for guests with disabilities:  the outdoor hot tub had a chair lift to assist individuals who cannot go down steps, and special room accommodations were available for hearing impaired guests.

Often you can find theaters that offer “sensory friendly” movies or performances, where the lights are dimmed but are not fully off, the sound or music is lowered, and families can bring their own snacks. Children are not discouraged from getting out of their seats to dance or wiggle around on the floor.

Although the American with Disabilities Act (ADA) has been the driving force behind many of the physical changes in public places, organizations or businesses often go above and beyond the requirements of the ADA to make sure their guests are able to take full advantage of their offerings. The inclusive, welcoming attitude of these organizations is apparent and makes it easier and more enjoyable for you to spend a fun day with your entire family.

Bottom line

If you are heading out of town for the weekend, thinking of going to a theme park or sports stadium for the day, or simply wish to go to a restaurant to eat, check out the website of the venue or call them to see the kind of accommodations they offer.  The information is usually listed under Guest Services, Accessibility Guide, Access Guide, Disability Services, or a similar title. With so many recent positive changes, there are fewer reasons to stay home and not take full advantage of a wonderful family outing.

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 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.

It’s a marathon, not a sprint

Wednesday, August 20th, 2014

roller-coaster-rideAll children have their highs and lows, but for children with special needs, the extremes tend to be more extreme.  The typical ups and downs of childhood have higher highs and lower lows.

The lows

It is hard to watch your child be frustrated because she can’t do the things that her peers can do. Your child’s frustration may take the form of crying, meltdowns or sadness (depending on your child’s age). When you stop to think about it, it seems very reasonable. Adults react much the same way. But, with toddlers or children, they don’t have the maturity to understand their condition, or the patience to wait until they acquire certain skills. In many cases, they may never acquire the same skills as their peers. Thus, the lower lows.

Along with the lower lows come the “two steps forward and one step back” type of progress that is so common among children with special needs. This is so frustrating – for a parent and especially for the child. You tend to feel like you are on a roller coaster ride – no sooner do you get up in the air and are so happy about progress, when you take a bit of a plunge and feel low again.

The highs

On the flip side, the highs are much higher. When your child achieves a milestone that she had been struggling with (that comes easily to her siblings or her peers), the happy dance is much more jubilant! You celebrate each and every accomplishment, no matter how small. The small steps are big steps to a child with special needs. In fact, every step is a big step. The joys of watching your child inch forward has a much more intense meaning.

Progress is a wiggly line

What has helped some of the parents I know who have children with special needs is realizing that it is a marathon, not a sprint. You need to pace yourself and look at this as one long journey. You may get lost or a little off track now and again, and even need to take breaks to re-fuel or get new directions. But, overall, you will stay on your path and get to your child’s unique destination…eventually. It is important to remember that you need to look at progress as a kind of wiggly line. Look at the overall progress, not minute to minute progress.

Bottom line

Remember that this path has its uniqueness and gifts, too. After all, if we were all the same, this world would be so boring. Try to look past what your little one can NOT do, and focus on what she CAN do. Then, all of the prospects for her future brighten up considerably.

 

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 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.

From summer to school – the big transition

Wednesday, August 13th, 2014

preschool classThe transition from summertime to the school year can be a daunting one for any child. For a child with special needs, it can be especially difficult. And, for her parents, this journey can be very stressful and anxiety provoking. Whether your child is returning to preschool or elementary school, there is so much to think about.

In two prior blog posts, I shared tips on how to survive the transition from summer to school, especially if your child has trouble transitioning from one activity to another in his daily life:

•    Re-entry: life after vacation will help you cope with the changes of re-establishing your “old” routine after having been away on vacation. Creating a memory book to document last year’s successful transition to preschool/school will help your child realize that he can do this…again.

•    Summer to September covers topics such as meeting the teacher, changing bedtime hours slowly, making medication adjustments, and learning to cut YOURSELF some slack. If your child has an IFSP, IEP or 504, it is very helpful for your child to meet her teacher and for you to hold planning meetings before school starts. It is also helpful for your child to visit the classroom.

Here are some other ideas to help ease the transition.

Create a “cheat sheet”

The first week of school is hard on teachers, too. One teacher may have 25 students to get to know. To help ease the transition for your child, and to keep it manageable for her teacher, create a “cheat sheet.” This short page of bullets will describe your child’s toughest challenges, and what the teacher can do to help ease the transition. Depending on whether your child has a formal diagnosis, an IEP or a 504 plan, or if she is just extra sensitive to change and transition, a “cheat sheet” can help your child’s teacher deal with the rough patches during the first week of school. It should include certain triggers and the most obvious areas of difficulty.

For example, if your child has sensory issues and hates sudden loud sounds, you might have a bullet that says “Diana has a hearing sensitivity. The popping of balloons, sound of fire drills or kids screaming will cause her to put her hands over her ears or cower underneath her desk.”

Likewise, if your child needs extra time to process speech, you can say “Speak directly and slowly to Diana and wait for her to process your words before expecting her to reply to you. If Diana is quiet, she is processing your sentences. She needs extra time to understand all of your words.”

Keep the page short, with just the most important items listed in bullet form. You want the teacher to be able to know the most important tips without having to read pages and pages about your child. Then, follow-up later in the week and ask for an appointment to have a conversation.

Use a communication journal

Often parents and teachers use a daily communication journal to discuss your child’s day. The teacher or classroom assistant jots down any issues (or achievements) that occurred that day. It is a way for you to learn about your child’s day without depending on your child to tell you. You can then add your own comments about homework issues, sleep problems (which may affect mood or attention span the next day), or achievements that occurred at home. Communication journals are often a part of an IEP, so that both the parent and teacher are fully aware of a child’s day/evening, which will take the guesswork out of figuring out why your child is acting in a particular way. A journal can be a way of identifying small problems before they become big ones.

Be patient

It may sound obvious, but patience is paramount. Heading to school is very, very hard for a child with special needs. The changes in routine, scenery, friends and personalities is a lot to take in! Your child may hold it together while at school and then have an enormous meltdown the moment she gets home. Try to understand that she is coping as best she can and try to have patience.

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. Click on “Help for your child” and scroll down 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.