Posts Tagged ‘Special needs’

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.

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.

 

January – a time to get your child’s records organized

Wednesday, January 20th, 2016

Binders of child's recordsIf you have a child with special needs, you will find that you collect enough reports, medical statements, doctor’s notes, school IEPs or 504s, and a host of other paperwork, to fill a room. Keeping it organized is very important as you learn to advocate for your child. Even if you are not a neat-nick or haven’t been organized up to this point, this is a great time to get started.

Commit to being organized from today onward (don’t think about the papers from yesterday yet). Get yourself a binder or a file cabinet and label it 2016. As you get each item, file it chronologically in your binder or file folder.

Once you have your method for collecting items from today and for the rest of the year, you can go back and organize your files since the birth of your child. See this post to learn what you should include in your binder, how long you should keep materials, and where to go to learn essential tips.

Some parents separate their files according to topics: medical reports, school, etc. I have always found it easiest to simply have a binder/folder and add items as I get them, separated by year. Either way, you can tag items as you get them, for quicker retrieval. For example, if your child had an evaluation for physical therapy, you can put the report in the binder/folder and put a “PT Eval 2016” tab on it.

You have enough to do just caring for your child. Keeping track of your child’s records should not be something that adds stress to your life. Check out these tips and see what works best for you. The goal is to be organized enough so that when you need an evaluation, report, or your child’s latest IEP, you can find it quickly.

Being organized will decrease your stress and anxiety – a great gift to give yourself.

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.

 

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.

 

Holidays & your child with special needs- tips for the NICU, visiting Santa, dinners & traveling

Wednesday, December 9th, 2015

Parents in NICUFrom spending holidays in the NICU, finding developmentally appropriate toys, eating at Grandma’s house (without a meltdown!), to visiting Santa in a loud, bright mall, the holidays can be oh so hard for a child with special needs. Here is a walk down blog post memory lane to help you get through the next few weeks and even have some fun.

We wish you a stress-free, calm, smooth holiday season. If you have any tips that have worked for you, please share them! You can find more posts on parenting a child with special needs, here.

Questions? Send them to AskUs@marchofdimes.org.

 

Prematurity, learning disabilities, and ADHD

Wednesday, October 21st, 2015

birth announcementPremature birth is a leading cause of lasting childhood disabilities. October is Learning Disabilities and ADHD Awareness Month – a good time to become familiar with the effect prematurity can have on learning and behavior.

Of course, many babies who are born prematurely do very well. We hear stories of preemies who had a rough start in life, spent days, weeks or even months in the NICU and years later have no serious issues to report. But, some preemies will have long-term challenges with learning or behavior.

LD and ADHD

Learning disabilities (LDs) are persistent difficulties in reading, writing and/or math skills. They are not the same as learning differences. In order to help your child with learning struggles, it is important to first understand what LDs are and are not.

Kids with LD see the world in a slightly different way. Check out this post which describes a great resource from Understood.org to give you insight into your child’s world.

Children with attention deficit hyperactivity disorder (ADHD) may have trouble paying attention, controlling impulsive behaviors or be overly active.

What are the numbers?

  • Globally, 5 million babies are born too soon every year.
  • Babies born prematurely are more likely than babies born full term to have learning and behavior problems throughout childhood. About 1 in 3 children born prematurely need special school services at some point during their school years. Learning problems may not appear until elementary or even middle school.
  • According to the U.S. Department of Education, 1 in 5 children in the U.S. has learning and attention issues. “Approximately 2.5 million students in the U.S. are identified as having a specific learning disability—such as dyslexia, dysgraphia, and dyscalculia—and as many as 6 million students are identified as having attention deficit hyperactivity disorder (ADHD).”
  • The CDC reports that in 2012 more than 5 million children aged 3–17 had ADHD (10%). Boys (14%) were almost three times as likely as girls (5%) to have ADHD.

Resources to explore

If your child struggles with learning or behavior, where should you go for reliable information?

  •  The American Academy of Pediatrics (AAP) offers articles for parents to better understand ADHD.
  • Parent Training and Resource Centers, available in every state, offer information and support to families. Find your center.
  • The Center for Parent Information and Resources (CPIR) has hundreds of easy-to-read articles on disabilities, special education and the law – including how to obtain school services for your child.
  • The Understood website provides a wealth of information and support to individuals and parents of children with learning and attention issues.
  • The State of Learning Disabilities, 3rd Edition, 2014, is a downloadable review of LD. It is available on the National Center for Learning Disabilities website where along with the statistics on LD, it describes public attitudes towards people with LD, characteristics of kids with LD, employment issues, and lots of other information.

Students with LD and/or ADHD may face challenges, but they also have strengths and may possess outstanding abilities in certain areas. Understanding your child’s strengths and weaknesses, and focusing on proven educational methods and therapies will help your child be as successful as possible.

Bottom line

Babies born prematurely are more likely than babies born full term to have learning and behavior problems. But help is available. Check out our table of contents for more information.

And if you have any questions, email or text AskUs@marchofdimes.org.

 

March of Dimes NICU Family Support® program offers services to thousands of families every year

Wednesday, September 23rd, 2015

Nurse and mom in NICUNow in its 14th year, this unique program offers comfort, support and information to families who have a baby in the NICU (neonatal intensive care unit) at over 120 hospitals across the U.S.

Babies in the NICU may have been born too small, too soon, or with a medical condition that requires intensive care. Throughout the NICU experience, parents can be involved in their baby’s care in a variety of important ways. The March of Dimes developed the NICU Family Support program to help support NICU families during their baby’s time in the NICU. The program also educates NICU staff about the best ways to support babies, families, and each other.

Specialized materials for long and short NICU stays

Hospitals with a NICU Family Support program are able to offer their families relevant, NICU-specific materials including a keepsake booklet, a guide for parenting in the NICU, and a NICU guide and glossary. As part of the program, hospitals also receive information for extended family members such as grandparents and siblings.

There are also materials for families whose babies stay in the NICU less than 14 days, a common experience that can also be very frightening and stressful.

Families can access March of Dimes NICU resources online from any device with an internet connection, in both English and Spanish. Topics include medical care, understanding equipment, how to hold and feed your baby in the NICU, becoming an informed parent, and many other important subjects.

Hospital staff education

NICU Family Support also provides ongoing education for hospital staff. This education focuses on best practices in supporting families, and the benefits of appropriate family-centered care for NICU babies at every stage of development. Training for staff is based on best practices and evidence based care, to help support them in their important role.

Parent to Parent online community

Support from other parents can be found on our online community, Share Your Story where current and “graduate” NICU parents reach out to help guide and comfort one another. Parents can log on and post a comment or question to join this warm and inviting group.

 

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

See other posts on how to help your child including how to transition from the NICU to Early Intervention services.

 

Kids with special needs head back to school

Wednesday, August 26th, 2015

school-bus-and-stationeryThe start of school is an exciting time for most children and their parents. Many children with special needs eagerly anticipate the start of a new school year. But lots of kids are incredibly anxious at the thought of all the unknowns: new classroom, teacher, friends or school.

If you are the parent of a child with special needs, how are you feeling about the start of the new school year?

Are you…

Scared or fearful – Will your child’s particular needs be met?

Afraid – How will your child react to new smells, lights, sounds and routines?

Overwhelmed – Is your child going to a new school? Are you wondering whether he will be able to handle the transition?

Unprepared – Do IEP meetings make you feel like you don’t know what you are doing?

Alone – Do you feel like you are the only parent with your concerns?

Worried – Is your child going to do well in a class with “typically developing” peers?

Insecure – Are you wondering when to swoop in and help your child versus sitting back and watching him and the school handle any hiccups or problems?

Nervous – Will your child make friends? Will he be by himself on the playground?

If you are experiencing any or all of the above emotions, you are not alone. There is no doubt that starting a new school year is hard on students AND parents. But, when you mix in the complications of dealing with a disability and the necessary accommodations or supports that need to be in place in order for your child to succeed, it can be very stressful!

This blog series, and all of the resources listed in each post will help you tackle whatever comes your way. By being prepared, you will calm your nerves. Hopefully, you will become excited, confident and in-control. Your little one will sense your positive outlook and enthusiasm, and it will rub off on him, too.

Check out these tips to smooth the back to school transition for your child. Learn helpful ways to make the transition from summer to school do-able and realistic, including changing bedtime hours, adjusting meds and meeting your child’s teacher.

Please share your feelings about the new school year – good, bad, up, down, and anything in between. Got any tips? Let’s hear them. We all learn from each other.

 

Have questions?  Text or email them to AskUs@marchofdimes.org. We are here to help.

Tips for family travel with your child with special needs

Wednesday, July 29th, 2015

air travelIt is the end of July already, and many summer programs or camps are beginning to wind down. Some families like to take a few days or more to spend together. But, often traveling with a child who has complicated or special needs can be difficult.

Here is a blog post on how you can vacation with your child with special needs. It includes tips on what to do ahead of time, how to enhance communication while on your trip, and how to implement a positive reward system to help encourage desired behaviors. This post also includes travel ideas, such as the best places for your family to go with your child.

Accommodations help vacationers with special needs reviews special offerings and assistance available in many theme parks, sports stadiums and ball parks as well as hotels, pools and restaurants, thanks to the ADA. Even airlines will let individuals with cognitive or physical disabilities pre-board flights, to make life easier for you and your child.

There is no need to stay home when you and your family can get a change of scene and pace with just a little pre-planning and inquiring. vacation-family-carHopefully, these posts will give you the tools you need to make it work for you and have an enjoyable vacation.

If you have had a good experience at a particular destination, we’d love to hear about it. Please share.

 

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

See other posts in the Delays and Disabilities series, here.