News Moms Need

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.

Whether your child has a medical condition, disability, receives services through the Early Intervention Program or Special Education, one of the best things you can do is to keep all of your child’s records well organized. 

Why is this so important?

If your child is in the early intervention program for babies and toddlers or if he is receiving services through your local school system, you will find that you will amass an enormous amount of paperwork. Keeping it organized will help you tremendously when you need to find documents for IFSP or IEP meetings, visits with other doctors or specialists, and if you need to apply for other programs or services. It is very important that you keep all evaluations and test results so that future specialists can see the history of your child when he evaluates him. Having orderly records will also help you if you need to speak with an attorney in an attempt to try to obtain services you feel your child should rightfully receive.

How should you get organized?

My favorite way to do this is to get an old fashioned three ring binder and put each item in it in chronological order (date order). Put the oldest one on top and the newest one at the bottom (so it reads like a book). You are going to need more than one binder as your child grows, and each one can be labeled a different year (2013, 2014, etc.). This binder method will allow you or your child’s doctors to review your child’s history in a beginning-to-end format. It will also give you a “big picture” of your child, and help you put the details of all the different moving parts into one coherent whole.

What should you put in the binder?

Put everything that is related to your child’s health, disability and education in the binder. This would include:

• Medical records – beginning with your child’s birth (and even your pregnancy if it is applicable or if you have it)
    • All evaluation reports
    • Your child’s ISFPs and/or IEPs
    • Report cards
    • Educational test results (such as standardized tests)
    • Your notes from meetings or phone calls with school personnel, doctors, or other individuals, with dates
    • Notes from your child’s teacher
    • Samples of your child’s work
    • The business cards of all of your child’s doctors. You can either put them in plastic business card holders, or create a master list of all the doctors with their contact info.
    • CDs or thumb drives of electronic information that is on your computer (always back up files!)
    • A list of all the medications your child is taking, with the dosage, frequency and prescribing doctor.

Some experts say that it is also helpful to create a one page summary sheet, which is almost like a table of contents. It should list each document, the date the document was created or received, and a brief description of what it is (eg. “John’s neurological evaluation, 2009,” “IEP for 5th grade,” “notes from team meeting on January 12, 2011,” etc.).  This will help you to locate valuable information when you need it quickly (such as right before a meeting or a visit to a new doctor). The more organized you are, the easier it will be to manage your child’s journey.

Some people don’t like the binder method. If you find this does not work for you, then you might find it easier to put all of the above items in a file cabinet (in file folders) in chronological order. Whichever method you choose, just be consistent and label your folders so that you can find things when you need them.

When should you stop keeping these files and records?

Besides needing these records for early intervention or school based services, you may need these records for the high school years and beyond graduation. For example, you may need these records in order for your child to qualify for accommodations for college based entrance exams, such as the SAT or ACT. You will also need these records to support a request for testing accommodations at college. Lastly, many of these records will be required to apply for government benefits, such as Supplemental Security Income (SSI).  So, I suggest that you keep your file system going for as long as your child (or later as an adult) has special needs.
 
Where can you get more help with this?

I often recommend that parents go to the NICHCY website as they have a Sample Record-Keeping Worksheet as well as a description of all of the various kinds of info that you should include in your binder  on page 15.

In addition to NICHCY, you can also go to Wrightslaw, an extensive website dedicated to helping parents navigate the maze of special education.  They offer concrete advice on how to advocate for your child with special needs. They also have great articles on how to organize your child’s records.  

Bottom line

If you begin your record keeping early, you will not be overwhelmed by the avalanche of papers that will undoubtedly come your way. But, if you did not have a method of record keeping before today, don’t worry. Simply start with today and you can go back and organize prior paperwork another time. Being organized will cut down on the stress that occurs when you feel like you are buried beneath a mountain of paper. You have enough to tend to with your child – it is helpful if the paperwork does not get in your way but rather helps you achieve your goals. Of course, the best part of all is that you will feel more confident and in control of your journey.

Let me know if this helps or if you have other suggestions. What has worked for you?

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.

When my son was two, he suddenly had the urge to grasp everything outside of his reach. Curiosity ruled the day – fear was nowhere in the picture. Every direction was up.

He climbed on chairs, bookcases, the dog, the stairs… He climbed into boxes, cabinets, the bathroom vanity… He was not one to sit idly by – ever.

I discovered that for safety’s sake, it would be a good idea to get down on my knees and see the world from his eyes. I learned a lot! Here are a few tips for first timers:

• Folding chairs are flimsy and can gobble up a toddler. Put them away.
• Dining room chairs lead to the dining room table! Keep the chairs back against the wall.
• Bookcases may appear sturdy, but they can come crashing down on top of a mountain-climbing tot. Anchor them to the wall near their top.
• Know your dog. Will he snap when Junior is pestering him too much, or will he just get up and move?
• Stairs are irresistible. Pressure gates are a real blessing until you can teach your mountaineer the safe way to go up and down. “Practice makes perfect,” so have fun with him while he learns the right way!
• Didn’t you know that boxes can be more fun than the expensive toys that come in them? Make sure they are sturdy if they’re going to be climbed on or in. 
• It’s fun to climb into a kitchen cabinet and pull out all the pots and pans. Make sure whatever is in reach is not breakable and that the dishwasher soap and other cleaning supplies are up on a high shelf. (Some kiddies are very good at opening “childproof” locks!)
• Bathroom cabinets are fun for your kids to get into as you’re taking your shower. Again, keep all cleaning products out of reach. That goes for nail polish and makeup, too.

Do any of you seasoned parents have other suggests to add?

April is Autism Awareness month. Did you know that the March of Dimes funds Autism research? In fact, in the past 10 years we have funded 55 grants totaling over $10.8 million. It is our hope that one day the answers we find will make further research unnecessary.

This month, many organizations are helping to spread the word about this serious disorder and the impact that it has on an entire family. And, at the same time, they are helping these families have a great time together. Here are two exciting initiatives that I want to share with you. Both welcome the kids and families affected by Autism in a very positive and FUN way!

The first is Major League Baseball’s decision to have all 30 of their Clubs raise awareness for the disorder during one home game in April, or on another date during the regular season. Many of the MLB Autism Awareness games throughout the league will provide special opportunities and a safe, friendly environment for families and individuals affected by autism.  All too often, kids with Autism (and their families) miss out on doing fun stuff like going to a baseball game. On these designated days, MLB teams up with Autism Speaks or other local autism charities to offer special events. Kids with Autism will have special opportunities to participate and enjoy the game.
 
For more information about MLB Autism Awareness and to check on your favorite team’s Autism Awareness dates, please visit MLBCommunity.org.

The second initiative involves AMC Loews and the Autism Society. They have teamed up to present sensory friendly films to families with children with Autism. Often, kids with Autism are particularly sensitive to sounds and can’t sit through a movie due to the volume of the soundtrack. In addition, kids with Autism are often sensitive to light and many can’t munch on typical movie theater snacks due to special dietary restrictions. So, on designated dates, the movie theater will brighten the theater and turn down the sound, eliminate ads and previews, and allow families to bring in their own snacks. Kids can even dance in the aisles if they want to! As AMC says, their “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.” Sounds like a gift to parents as well as to any child with a sound or light sensitivity - a win-win for all.

To find a participating AMC Theatre near you, click here.

So, how great is this…?!  I recommend you get the family out and enjoy these special events and help raise awareness at the same time.

The March of Dimes has been helping families by focusing on improving the health of babies and children for 75 years.  We all aspire to provide the best care and comfort for our children.

Over half a century ago, when paralytic polio threatened our children, Danny Kaye and Bing Crosby projected a similar message to pitch for the March of Dimes. The photo above, with March of Dimes poster boy Delbert Dains, was taken on the stage set for the movie White Christmas, released in 1954. The song “White Christmas,” by Irving Berlin and which Crosby first popularized in 1942, remains the best-selling single of all time. That Bing Crosby was one of the three “ultra icons” of pop music (the others are Elvis Presley and the Beatles) is undoubtedly lost to most people today, but a person viewing this photo in 1954 might recognize a familiar set of associations typical of that era: a child disabled by contagious disease, the most popular singer of the age, and the nostalgic pull of the meaning of Christmas and the emotional security of home.

The March of Dimes message has evolved, just as our mission has evolved. Our fervent wish for “stronger, healthier babies” is the bedrock from which all of our educational programs and scientific research are launched. From that perspective, and in the spirit of the season, we hope all the readers of News Moms Need will find that special place in the coming weeks “where tree tops glisten, and children listen…” Happy Holidays from the March of Dimes.

This recall involves marble-sized toys that absorb water and grow up to 400 times their original size. Due to risks associated with swallowing these toys, the U.S. Consumer Product Safety Commission and Health Canada, in cooperation with Dunecraft, Inc., announced a voluntary recall of the following consumer products: Water Balz, Growing Skulls, H2O Orbs “Despicable Me” and Fabulous Flowers toys.

When the marble-sized toy is ingested, it expands inside the body and causes a blockage in the small intestine, resulting in severe discomfort, vomiting, dehydration and could be life threatening. The toys do not show up on an x-ray and require surgery to be removed from the body.

Consumers should immediately take this recalled toy away from children and contact Dunecraft at (800) 306-4168, from 8 a.m. to 5 p.m. ET Monday through Friday, or online at www.dunecraft.com, for a free replacement toy. For more information and pictures of the items, read the complete CPSC recall statement.

Heatstroke is an emergency condition. A person with heatstroke has an elevated body temperature caused not by illness, but by the surrounding temperature. Children can easily have heatstroke in the summer when playing out in the yard for long periods of time or if left in an overheated closed car for a just a short while.  Tragic deaths have occurred as a result of leaving a child in the car for “just a few minutes.” Never leave a child unattended in a closed car – never.
 
Children who are not dressed properly for hazy, hot and humid days (this is a classic “less is more” situation) also are targets for heatstroke. If overdressed, a child’s temperature can zip up to over 105 degrees Fahrenheit in a short time.  This is true for high school students as well as babies.

There are quite a few basic differences in the chemical makeup between children and adults. These differences make it harder for children to regulate body temperature than adults. Read what the American Academy of Pediatrics (AAP) has to say about this and take appropriate precautions. 

The AAP states that if you ever suspect a child of having heatstroke, take his temperature with a thermometer (just feeling the skin or using temperature-sensitive tapes will not be accurate), remove extra clothing, fan him, sponge him off with cool water and keep him in a cool, shaded place. Once his temperature has dropped, take him immediately to a pediatrician or emergency room for evaluation.

Most of us think that as summer approaches all of those pesky winter viruses are gone. Although many common viruses are more likely to be passed around during the cold winter months, as summer approaches there is one virus that many parents may be dealing with—coxsackievirus. Coxsackieviruses are part of the enterovirus family of viruses (which also include polioviruses and hepatitis A virus) that live in the human digestive tract. Coxsackievirus is sometimes also known as hand, foot and mouth disease.

This virus is very contagious and is typically passed from person to person through nose and throat secretions (such as saliva, sputum, or nasal mucus), or feces of infected persons. This of course means that young children are particularly susceptible. In fact, the infection usually occurs in children under 5 years of age, but occasionally can occur in adults too. Outbreaks are seen most often in the summer and fall, especially in more temperate climates.

The good news is that coxsackievirus sounds a lot worse than it usually is. Most coxsackievirus infections aren’t serious. They typically cause only mild signs and symptoms, such as fever, sore throat, joint pain, and headache. Doctors usually diagnose it by the tell-tale blister-like rash on the hands, feet and in the mouth. This usually develops one to two days after the initial symptoms.

There is no specific treatment for coxsackievirus. It is a virus so antibiotics will not be effective in treating it. Most physicians recommend rest, fluids, and over-the-counter pain relievers or fever reducers when appropriate. There might be a slightly elevated risk for complications during pregnancy, so if you think you have it be sure to show it to your provider.

Hand washing is the best prevention for coxsackievirus. And of course if your child does develop this, it is important that she stays home from school or daycare until she is better so that other children do not become infected. The length of illness varies but it usually lasts for 2 or 3 days. Coxsackievirus is one of those things that most parents have to deal with at some point. Just know that soon it will be over and your little one will be back to her normal self.

The air quality index (AQI) tells you how healthy the air is to breathe each day. It tells you how clean your air is or how polluted it is with solid particles and gases. The AQI focuses on health effects you may experience within a few hours or days after breathing polluted air.

Harmful ozone forms when pollutants react to heat and sunlight. This is why we see more smog in the spring and summer. You probably have noticed your local weather report now includes a number or color for each day’s AQI. It’s important to pay attention to this. Here’s a link to a chart that explains the air quality index.

For their size, children take in more air (and pollution) than adults when they breathe. Their young lungs are continually growing and their airways are more likely to narrow in reaction to pollutants. When running around, which is most of the time in our house, children breathe faster and more deeply than adults. This can bring the pollutants in the air further into their lungs.

Children with respiratory ailments, asthma or other breathing difficulties should be kept indoors when the AQI rises. Keep an eye on your local AQI and adapt your planned activities for the day if necessary. It’s important to follow their doctor’s instructions for asthma treatments and to have assistive devices (like inhalers) nearby when the AQI is high.