News Moms Need

It is important to know what to do to protect yourself and your family in case of an emergency.  It is essential that you know what to do if you have a baby or child with special needs.

Since June is National Safety Month sponsored by the National Safety Council, and this week’s theme is emergency preparation, it is appropriate that I talk about how to prepare for an emergency when you have a child with special needs.

Where can you find information?

Family Voices is an organization dedicated to helping families care for their special needs children. They offer tips on how to keep your special needs kids safe in an emergency or disaster. They say:

“If your son or daughter has special health care needs, your emergency plan will probably be more complicated, involve more people, and may require equipment. This will be the case if your child or youth:

   • Depends on electricity — to breathe, be fed, stay comfortable;
   • Cannot be moved easily because of his medical condition or attachment to equipment;
   • Uses a wheelchair, walker, or other device to move;
   • Cannot survive extreme temperatures, whether hot or cold;
   • Becomes afraid or agitated when sudden changes happen;
   • Cannot get out of an emergency by herself for physical or emotional reasons.”

They recommend you download the interactive emergency form available on the American Academy of Pediatrics (AAP) website. This is a terrific resource which can be updated as your child grows and changes. You can see all of Family Voices ideas and resources on their webpage. They also have “Family-to-Family Health Information Centers” (F2F HICs) in every state to “provide assistance and support in emergency preparation.”  Click here to learn more about the F2F HICs, or to find one in your state. 

Our website has lots of good info on how to prepare for a natural disaster. In addition, Ready.gov has info for families with individuals who have special needs. They have an easy to follow preparation list. You will also find all sorts of tips, such as how your phone can alert you of an impending emergency.

How can your kids help?

You can get your kids involved in creating a plan, too. It helps them to feel involved and to better remember what to do when the time comes, because they helped to create the plan. Ready.gov has a kid-friendly webpage with activities to get them engaged in preparing for an emergency, which includes an activity book for kids.

They also have a printable brochure with tips on how to prepare for a disaster for people with disabilities that covers how to help individuals with functional or special access needs.

Bottom line

Don’t wait to prepare for an emergency or a disaster until it is upon you. With a little bit of foresight, you can have a plan in place and have peace of mind.  And, if or when the time comes, your special needs child will be well taken care of.

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

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.

Your beautiful baby has arrived. But he or she was born prematurely or is sick, and needs special care. Your joy over your baby’s birth may be mixed with worry and heartache. This is not how you expected fatherhood to begin.

The birth of a premature or sick baby is stressful and difficult for all family members. But it can be especially rough on you. You may worry about your baby and your partner, as well as other children at home, demands from your job and financial concerns. While each father develops his own way of coping with the birth of a premature or sick infant, this information may help make this difficult time a bit easier.

You may feel many conflicting emotions after your baby is born. These emotions, from anxiety and fear to anger and resentment, love and pride, helplessness and hope, can be very intense. All of the feelings are normal and most men experience some of them. As your baby gets stronger, your negative feelings may lessen. Expect this to be an emotional roller coaster ride for a while.

Keep in mind that the birth of a sick child can put stress on the relationship between you and your partner, as well as your relationships with other family members. It’s important to share your feelings with your partner through your baby’s illness, so that you can support each other and come through this experience a stronger team.

Read more about keeping your relationship strong, ways to help your partner and your baby, how to let others help you and how to take care of yourself in our article for dads. Being a NICU dad can be difficult, especially if your baby is very sick. You should take pride in all the things you do to help your baby and your partner, and realize that you are making a difference.

When your child is tired, do you carry him? When she skins her knee, do you kiss the booboo and make it better? Do you play “up in the air” or rock them if they’re colicky? Do you worry when they’re sick? Do you change their diapers when they’re really ripe? Do you make an emergency diaper run when you’re suddenly down to your last two?

Can’t cook? No problem. Do you let your little ones climb up in your lap to share a bowl of ice cream with you? Who wouldn’t love that?

Reading not your thing? No problem. Do you flop down on your child’s bed and make up stories? I’ll never forget my father doing that.

Not an outdoorsy kind of person? No problem. Do you lie in the grass some times and point to the fluffy cloud that looks like a giraffe… “Can you see it?” Or look at the stars at night and sing “Twinkle, twinkle” to your little one?

Can’t throw a ball? No problem. Do you tell your children “I love to watch you play?” Can you help them ride a bike? It means the world to them.

Are your children a little older? Can’t figure out the “new math” or the computer programs? No problem. Do you ask them to explain it to you? Our grandkids are light years ahead of us and they love explaining to Grandpa how things work. He turns to me and asks, “Were we ever half that smart?”

You don’t need to be brilliant or an athlete or a movie star. If you show them you love them, you’ll always be a superhero to your children.

My Wednesday blog post series focuses on Delays and disabilities – how to get help for your child. But today I want to digress slightly and take a moment to go global. Why? Because this year, UNICEF’s State of the World’s Children 2013 report focuses on Children with Disabilities. 

It is very hard to estimate how many children around the world have disabilities. One rough statistic estimates that 93 million children, or 1 in 20 children age 14 or younger, live with a moderate to severe disability of some kind. These numbers are staggering. For every child with a disability, there is a family and community that are also affected. The ramifications of a disability can be long lasting and often devastating. This is the sad news.

The better news is that this year, UNICEF’s recent report examines how children with disabilities are faring around the globe and offers recommendations to help improve their lives.

What are some of the problems?

In many countries, children with disabilities do not have the same rights and opportunities as children who are not disabled, nor do they receive the same level of education and health care as non-disabled children. Many children with disabilities are often abused or neglected. A lack of understanding and resources contributes to the institutionalization of many children who would be better off remaining with their families and receiving care within their communities. This video of the experiences of Cara, a UNICEF worker in Haiti, shows the serious situation of many children with disabilities.

Especially important is the need for children with disabilities to be educated alongside children without disabilities, so that they may reach their full potential. By including children with disabilities in school with children who are not disabled, they are given opportunities that are critical for their success to become the best that they can be.

What is being done?

UNICEF reports that through an international commitment to build more inclusive societies, children with disabilities will have the same access to services, support and opportunities as their non-disabled peers. In order for these changes to occur, it is necessary to first enhance awareness of disability among the general public. Then, barriers to school, health facilities, public transportation, and other obstacles can be removed.

The report emphasizes the importance of including the children themselves, as well as their families, in assessing their special needs, so that their communities can best learn how to support them. Along these lines is the effort to reduce or end institutionalization of children with disabilities by promoting family-based care and “community-based rehabilitation.”

What does the future hold?

As Cara clearly demonstrates in the video mentioned above, individuals with disabilities may also possess great strengths and abilities. In the right environment, a child with special needs may flourish. This report encourages global conversations about the state of children with special needs, around the world. To quote the UNICEF report, “the future is far from grim.”

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

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.

Photo credit: © UNICEF/NYHQ2007-0745/Noorani

Listeriosis, a kind of food poisoning caused by harmful germs in something you eat or drink, is especially serious when you’re pregnant. It can cause nausea, vomiting, diarrhea, fever and headache.

There are over 1,600 new cases of listeriosis each year in the United States. Most healthy people don’t get sick from listeriosis. It mostly affects people with a weakened immune system, including pregnant women. If you get listeriosis during pregnancy, it can cause serious health problems for your growing baby including miscarriage, stillbirth, premature birth, low birthweight, and life-threatening infections.

According to the U.S. Centers for Disease Control & Prevention, pregnant women are 10 times more likely to get this serious form of food poisoning than others in the general population. And the risk is 24 times higher among pregnant Hispanic women, according to the Vital Signs report, released Tuesday by the CDC. 

Most people get listeriosis by eating food that is contaminated with the bacteria Listeria. Food can come in contact with Listeria in soil, water, animals or animal poop.
Foods that may have Listeria include:
• Vegetables that come in contact with animal poop in the soil or in fertilizer
• Meats, including beef, pork and chicken
• Unpasteurized milk and foods made with it. If a food has been pasteurized, it’s been heated to kill bad germs. Milk and juices often are pasteurized. Look for the word “pasteurized” on the product label.
• Hot dogs (and juice from hot dogs) and deli meats, like ham, turkey, salami and bologna
• Pre-made or cold salads from delis or salad bars
• Pates or meat spreads that have been kept in a refrigerator. Canned meat spreads are safe.
• Soft cheeses, like feta, Brie, Camembert, Roquefort, blue-veined, queso blanco, queso fresco or Panela
• Smoked fish (nova style, lox, kippered or jerky) that has been kept in a refrigerator. Smoked fish is safe if it’s canned or you use it in a cooked dish (like a casserole).

Foods can cross contaminate each other. Cross contamination is the transfer of harmful bacteria from one thing to another. For example, if you use the same knife to cut raw chicken and tomatoes and don’t wash the knife in between, it can pass Listeria from the chicken to the tomatoes. Or if you get juice from a hot dog package on a knife, it can pass Listeria from the knife to the next food you cut.

You may hear news stories about foods that have been recalled (not allowed to be sold) because of listeriosis. If you’ve eaten one of these foods, call your health care provider right away.

Signs and symptoms of listeriosis usually start a few days after you’ve eaten infected food. But it can take up to 2 months for them to appear. To test for listeriosis, your provider takes a sample of your blood or urine, or fluid from your spine. Your provider sends the sample to a lab for testing.

Listeriosis usually causes mild, flu-like symptoms including fever, muscle aches, chills, nausea, diarrhea. If listeriosis infection spreads to your nervous system (brain and spinal cord), symptoms may include headache, stiff neck, being confused, trouble with balance or seizures. Call your health care provider if you think you may have listeriosis. Treatment depends on your symptoms. During pregnancy, quick treatment with antibiotics can keep listeriosis from harming your baby.

Here are some things you can do to help prevent listeriosis:
• Handle foods safely when you wash, prepare, cook and store them. 
• Wash your hands well with soap and water after contact with animals, animal food, bedding, tanks or animal poop.
• Wash your hands well with soap and water after using the bathroom.
• Watch out for cross contamination between yourself, food and any utensils or supplies you use when preparing or eating food.

Finding the right resource to help your special needs child is so important for a parent. It can be a lifeline. I would like to introduce you to one resource that is a sort of clearinghouse to multiple resources. NICHCY, the National Dissemination Center for Children with Disabilities has a “gateway” that should be bookmarked on your computer. On this page you can find local and national organizations that are specific to a particular topic. For instance, if you select “Babies and toddlers” as your topic and “Early intervention” as your subtopic, a list of 14 organizations will pop up with descriptions and contact info.  Likewise, if you click on “Disability” and “Developmental delay” you will find five resources. There are dozens more combinations that you can enter, which will bring you to desired resources. Exploring could not be easier.

So, let your mouse do the clicking and find many organizations and resources that are on target for your particular question.  Simplify your life with this tool and perhaps you will find a gem or two that you did not know about, which will make a difference in your child’s life…and yours.

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

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.

The early intervention and special education world is filled with its own language – words and terms that are probably unknown to you. In a prior post, I gave you a list of acronyms to begin learning some of the abbreviations for certain terms. In this post, I am pointing you to a wonderful resource on NICHCY’s website that will help make sense of all these terms.  It will help you to understand IDEA (the Individuals with Disabilities Education Act), which is the law that applies to the world of early intervention and special education. For those of you who feel you are drowning in a sea of unfamiliar words, here is your lifeline.

Early intervention terms

First up are the key terms and phrases common in Part C of IDEA. This is the part of the law that applies specifically to babies and toddlers up to age 3. Go to NICHCY’s page on Early intervention Key Words  and scroll down the page for easy-to-read definitions and examples of each of the following terms. (The terms in bold will take you to my prior blog posts for additional reading.)

·         Consent

·         Developmental delay

·         Early intervention services 

·         Health services

·         Infant or toddler with a disability

·         Multidisciplinary

·         Native language

·         Natural environments

·         Prior written notice

·         Service coordination services

Special education terms

Likewise, for parents of children ages 3 – 21, NICHCY offers great explanations of many terms that you will hear and need to know that are in Part B of IDEA. (This is the part of the law that applies specifically to school aged children.) NICHCY’s  Key Terms to Know in Special Education provides easy-to-understand explanations on the following topics (some of which I have already written about in a prior blog post, but NICHCY’s info is too good not to mention again, here). Each category is explained and written about in detail and offers examples so that you have a full understanding of the meaning.

·         Point of Reference: IDEA

·         Child with a disability

·         FAPE (Free appropriate public education)

·         IDEA (Individuals with Disabilities Education act)

·         IEP (Individualized Education Program)

·         LRE (Least restrictive environment)

·         Related services

·         Special education

·         Supplementary aids and services

·         Transition Services

·         TA&D (Technical Assistance and Dissemination)

You should note that states interpret and base their own policies based on IDEA. So, there may be variations from state to state as to how IDEA is interpreted or implemented. First learn what IDEA says about a particular word, term or topic; then see if your state’s definition is the same or somewhat different.  NICHCY says “States develop their own special education policies and procedures based on what IDEA requires. They are allowed to go beyond what IDEA requires–and frequently do, because the law leaves a great many things to state and local discretion–but they are not permitted to have policies or procedures that are not consistent with IDEA’s provisions.”

Bottom line

Learning a little bit about IDEA and your state’s interpretations can go a long way in helping you know what services your child is eligible to receive. It will also help you to become a better advocate for your child. Understanding the system helps to eliminate confusion, frustration and unnecessary anxiety.

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

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

Memorial Day, originally called Decoration Day, is a day of remembrance of those who have died in our nation’s service. Enjoy the day off, the parades and barbecues, but remember why we celebrate this day.

Thank you to all the many men and women and their families who have given so much to keep our country safe and secure. It is important for us to recognize their dedication and sacrifice. Because of them, our flag continues to wave “o’er the land of the free and the home of the brave.”

If 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 should visit NICHCY for their list of possible summer camp options for kids with special needs. It seems that there is a camp program for every child, with every diagnosis or need.

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.

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

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.

IDEA is the federal law that governs special education. An important part of this law is Prior Written Notice or PWN.   It means that if your child’s school wishes to add, change or eliminate any part of your child’s special ed program, the school must first explain why, in detail, and in writing. NICHCY has a great explanation about PWN on their website.

Why is PWN important?

As with any process that is governed by laws, it is important that procedures be followed. Procedural safeguards help protect the process and that is what protects your child.

When should you receive PWN?

If your child is not yet receiving special education services, PWN should be given to you before the school evaluates your child. You then have the opportunity to respond to this written notice.

If your child is already in special education, PWN should be given to you when the school wishes to change her educational placement or services in any way. If you propose a change to your child’s IEP, and the school district does not agree with you and refuses to make the change, the school should provide you with PWN. If they do not, then ask for it. The PWN must explain all of the school’s reasons for refusing your request. It may also enable you to have a more thorough discussion with the school and hopefully arrive at an agreeable outcome.

Your child’s school should give you PWN within a reasonable amount of time before the school can make any changes to your child’s program. 

What should the PWN contain?

PWN must be provided to you in your native language. It should be written in plain, clear language (also part of the law). In other words, parents must be able to understand the proposed changes. It should not be written in a manner that makes it impossible for a layperson or consumer to understand. IDEA provides a template of what should be included in the prior written notice. You can see it here.  Wrightslaw also has tons of information on PWN and sample forms and letters.

Can you write your own PWN?

Let’s say you don’t agree with the school’s plan for your child. You can ask the district for the PWN to understand their reasons. Or you might even write your own PWN. Wrightslaw explains how to do this so that you write it in a way that follows the PWN template. After you submit it to your school, they would then need to respond to you in writing to provide explanations. 

Where can you go to get assistance?

In this and other blog posts, I have referred you to NICHCY’s and Wrightslaw’s websites. Another great place to go is the National Parent Technical Assistance Center. You will find Parent Centers located in most states. They assist parents by providing up-to-date information, and high quality resources and materials. Take advantage of this resource – it could be a lifeline!

Bottom line

Would you ever drive a car without knowing the rules of the road first? What would you do first? How would you do it? Where would you go?  Driving without knowing the laws could be disastrous!

IDEA is there to ensure your child receives a free and appropriate public education (FAPE). It provides a roadmap to follow for a smooth process for your child in special education. But there may be times when things don’t go smoothly. This is when the law can help you.  PWN is one of those provisions in the law that is there to help you navigate this system. Educate yourself on the process and soon you will feel that you are an equal player. The end result is that your child gets the help she needs, deserves and is to which she is entitled.

Remember, you need to know the rules in order to drive the car.
Have questions? Send them to AskUs@marchofdimes.com.

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