Archive for the ‘Help for your child’ Category

Spending holidays in the NICU

Friday, December 19th, 2014

Parents in NICU If your baby is currently in the NICU, this may not be how you envisioned spending your holidays. The realization that your baby is not home for Hanukkah, Christmas or the start of the New Year can be a real jolt. But, with a little creativity, an open mind and a willingness to adapt, you can still make your holidays bright. Here’s how:

• Although no two NICUs are exactly alike, many will allow you to decorate your baby’s bed space (but ask first). You may be able to attach pictures or tiny holiday decorations on the side of the incubator or warmer bed.

• Engage your other children if you have them. You can take a photo of them and pin it up on the side of your baby’s bed (if allowed). Likewise, take a photo of your baby and bring it to your child or children at home to decorate. They can make a Christmas ornament out of it and hang it on the tree or draw a picture around it and set it up next to the menorah. This way, your littlest one is always present at your home in a physical way.

• If your baby is healthy enough, see if you can put him in a special holiday outfit. A snowman, Santa or elf onesie would be adorable! (But be sure to check with the head nurse or doctor first.)

• Depending on the health of your baby and NICU rules, perhaps Dad can pose as Santa and take a photo with your baby. (Be sure the Santa outfit is squeaky clean please!)

• Place a tiny “Charlie Brown” tree, menorah or other symbolic decoration on the windowsill or counter next to your baby.

• If appropriate, see if you can play soft holiday music when visiting your baby. Humming or singing to your baby may be soothing to him and in this way you can introduce him to his first Christmas Carol or Hanukkah song.

• Make a clay impression of your baby’s foot as a keepsake. There are kits that you can buy that are easy to prepare. Or, if you have a creative streak in you, you can make the “dough” yourself. Search the internet for recipes.

• Enjoy your New Year’s toast together as a family in the NICU with your baby, even if you do it well before midnight to accommodate bedtimes of your other children.

Spending your holidays at the NICU is not something you planned on. But, hopefully, the New Year will be one of improved health, weight gain for your preemie, and a soon-to-be united family at home.

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. 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. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Visiting Santa is do-able for kids with special needs

Wednesday, December 17th, 2014

child w SantaThe sensory challenges experienced by many children can make a visit with Santa impossible, or at best, uncomfortable. From the noise and crowds of a busy mall, to the waiting on a long line, a fun and fulfilling experience can soon become a very stressful one. The sensory overload can quickly turn the visit upside-down. It is for this reason that a specially trained Santa and a well-planned visit can make all the difference in the world.

The good news

Across the U.S., there are opportunities for kids with special needs to visit Santa in a sensory friendly way. Malls, private organizations such as occupational therapy centers and doctor’s offices, fire stations, and many local disability groups offer programs that feature a specially trained Santa who welcomes children with varying needs. These Santa visits are unhurried, calm, quiet and understanding of the sensory issues of little ones. Parents often say the best part about visiting a sensory special Santa is not having to wait on long lines (which can be an impossible hurdle for many kids with special needs). An advance reservation may be required, so call ahead to learn about any important details that will help your visit go smoothly.

To locate a special Santa, check with the your local mall, town hall, parks and recreation department, fire and police stations, therapy offices, disability organizations, etc., to see if a “Special Santa,” also known as a “Sensitive Santa” or “Caring Santa” is in your area.

If you do see a special Santa, you might want to give the staff a quick heads up about your child’s needs. Or, you can write a short note to give to Santa before your child’s visit. The note can give a brief description of your child (eg. “Johnny is non-verbal but understands if you speak slowly,” or “he wants to tell you something, so please be patient and wait as he gets his words out”). Your note can also state the toys he wants for Christmas, so Santa can mention them and your child can nod in agreement. With a little planning and creativity, the visit can be smooth and successful.

If your child can not leave the house, you may be able to find a Santa that makes home visits. It is worth calling your local disability organization or town government to inquire. If there isn’t a program in your area, perhaps ask a therapist, special education teacher or another parent or relative familiar with your child’s special needs, to transform into Santa and visit your child.

It is a happy time of year, and a calm visit with Santa will undoubtedly make Christmas brighter for your child…and you!

 

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. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Toys glorious toys!

Wednesday, December 10th, 2014

playing with toysAt one time, parents did not have many options to find appropriate toys for a child with a disability or developmental challenge. Nowadays, it is possible to find just the right kind of toy for your child’s individual needs. She can play at her own level and be a very happy camper.

What child does not love toys? It seems to me that the word “toy” is synonymous with “child.” It is hard to separate the two. At this time of year, there is a seemingly endless variety of toys available. Yet, for parents of a child with special needs, it can seem hard to find toys that are appropriate for your child’s condition.

Fortunately, a simple internet search for “toys for kids with special needs” will yield multiple sites that feature toys for children with physical or cognitive challenges, speech and developmental delays, hearing or vision impairments, sensory disorders, issues related to autism and learning disabilities. You can find everything from sensory swings to board games with larger print. You will not be at a loss to find the right toy for your little one.

When searching for toys by age group, remember to keep your child’s adjusted age in mind if he was born prematurely. And, see this post for other tips on shopping for toys kids with special needs.

This year, let your fingers do the searching and find the perfect gift for your child with special needs. The hours of fun your child gets from a toy that is right for him will give you hours of joy!

 

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. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Getting back in the swing

Wednesday, December 3rd, 2014

unhappy childThe Thanksgiving holiday is behind us. Be honest now…how many of you are still having a bit of trouble trying to get back to your old routine? I know I loved having a few unstructured days of sleeping late, eating rich foods (mashed potatoes, gravy, yams and stuffing to name a few), and of course eating desserts. At my house we had apple pie with vanilla ice cream, and a double chocolate layer cake for anyone who was not an apple pie fan. OR, for most of us…we ate both (and loved every morsel)!

Now is the time when settling back to your old routine seems incredibly hard. Have you had trouble falling asleep, or worse- getting up, this week? Are you craving sweets during the day? Do you just seem to be feeling out of sync? Sluggish? (I think I have described myself pretty well, I’m afraid to say. How about you?)

Returning to your prior routine after a holiday is hard for most people. But it is especially hard for a child with special needs. Straying too far off from the usual foods, bedtimes, and daily routine can wreak havoc on your child’s system causing him to feel lost or a bit out of control. Due to his special needs, it may take longer to get back on track again, too. So, if YOU are feeling a bit out of sync this week, your little one is feeling worse, and will probably take longer to return to his prior usual routine.

Have patience and look for the bright side

I call getting back to your prior routine “re-entry” because it can really feel like a jolt to your system. In one of my prior posts, I wrote about the post-holidays adjustment period, and how the change in routine can cause a temporary step backward for your child. You need to be aware that this can happen, and gently try to get your child back on track.

For other children, the holidays can bring about a surge in new connections, making your little one gain language skills or venture to do new things. So, be on the lookout for new behaviors or positive gains.

Remember, if you are having trouble getting back to your prior “normal,” your child is probably experiencing the same feelings. Lots of praise and positive reinforcement for little steps, along with a boat-load of patience will soon get you all rolling again.

Check out these blog posts to find other coping strategies, such as creating your child’s personal “memory” or “transition” booklets, or re-adjusting to life after a vacation. If you have a technique of your own that works for your child, please share it!

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. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Taking Thanksgiving in stride

Wednesday, November 26th, 2014

turkeyThanksgiving and the start of the holiday season is here. For children with special needs, the unstructured vacation time, introduction of new foods, travel and social situations can bring on a new level of stress. Kids with special needs tend to have extra difficulty adjusting to unexpected changes in routine and their coping ability gets challenged to the max.

What can you do to help your child?

Prior posts on News Moms Need talk about what you can do to help smooth transitions for your child, especially during holidays. Here are a few posts to help you:

Bracing for the holidays

Holidays  :)  or  :(

A transition tip

Avoiding and handling tantrums

More resources for handling meltdowns

Hopefully, by having a game plan up your sleeve, you can make your Thanksgiving day as calm and happy as possible.

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. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Understanding preemie cues

Wednesday, November 19th, 2014

preemie handFor parents, seeing your little one in the hospital, hooked up to tubes and machines can be scary and overwhelming. We want the best for our children, and it can be unbearable to wonder if your baby is in pain or uncomfortable. Worrying comes naturally, especially when your baby can’t talk and tell you how she is doing. But did you know that babies have certain expressions and behaviors or “cues” that can tell you a lot about how she is feeling? By observing your preemie, she will give you signals that tell you if she is happy, sleepy, in pain, or ready to interact with you.

Learn your baby’s behaviors

Here are a few cues that may help you understand your baby better:

• Happy and content – A calm baby will have relaxed arms, legs and face, stable breathing, an even skin color, and may look around.

• Stressed – Her fingers may splay out wide, she will frown or grimace. Her breathing may increase and her skin become blotchy or pale. She may arch her back or neck, cry and even suddenly become limp or fall asleep.

• Self-soothing – Your baby will try to soothe herself by sucking on her fingers, grasping something (like your finger or a blanket), put her hands on her face or clasp her hands together.

Your preemie’s cues will tell you what she needs. For example, if your baby is stressed, she may be getting too much stimulation. The stimulation can come from too much sound, light or even the combination of being touched AND spoken to at the same time. According to authors Linden, Paroli and Doron in Preemies – the Essential Guide for Parents of Premature Babies, 2nd Edition, “a premature baby is less able to shut out stimuli and to calm herself down after being disturbed.”

What can you do?

Ask the NICU nurse how to comfort your baby. For example, if your baby arches her back, hold back or change your touch. See whether she calms when you cup her head and feet with your hands.

If your baby turns toward you, offer her eye contact or a gentle voice — or both. If she turns away when you talk but toward you when you sing, she’s showing a preference for that kind of voice. Keep in mind that some preemies can only process one stimulus at a time. She may like and respond to touch but not touch in combination with your voice.

Your premature baby’s cues will change as she gets older. As you get to know your baby, you will be amazed at how well you interpret her movements and expressions, and understand how she is feeling or what she wants.

By knowing infant cues, you can learn how to connect with your baby, and respond to her needs. Hopefully, knowing how your baby is feeling will help you to relax and not worry so much.

Source: Preemies- The Essential Guide for Parents of Premature Babies, 2nd Edition, by Linden, Paroli and Doron, 2010.

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. You can also view the Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Staying positive in the NICU

Wednesday, November 12th, 2014

parents in the NICUHaving a baby in the NICU is stressful. Very stressful. When a baby is born prematurely, the roller coaster ride of the NICU experience is emotionally, physically and mentally taxing for parents.

Premature birth is the birth of a baby before 37 weeks of pregnancy. One in 9 babies is born prematurely, or 15 million babies globally! Of these babies, one million will die. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems. Just knowing these statistics provokes anxiety and worry in parents. If you are a parent with a baby in the NICU, observing the ups and downs of your baby’s progress day to day can be heart wrenching and particularly wearing.

Depression more common in the NICU

Studies have shown that “in the month after delivery, parents of preemies are significantly more depressed and anxious than parents of term babies,” according to Linden, Paroli and Doron MD in the book Preemies – The Essential Guide for Parents of Premature Babies, 2nd Edition. The authors report that “Besides depression and anxiety, they (parents) were more apt to feel hostile, guilty, and incompetent at parenting and to isolate themselves socially…An early delivery is itself so scary that even many parents of healthy preemies react with shock and anxiety.” Given the stress associated with seeing your baby in the hospital, and the ups and downs of slow progress – it is not hard to imagine that depression is seen more often in parents of preemies than in parents of children born at term.

Many new mothers experience the “postpartum blues” or the “baby blues.” Baby blues are feelings of sadness you may have three to five days after having a baby. These feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. By about 10 days after the baby’s birth, the baby blues should go away. If they don’t, tell your health care provider who will determine if you may have postpartum depression (PPD), which lasts longer and is more serious than baby blues.

Signs of PPD include feeling tired all the time, having no interest in your usual activities, gaining or losing weight, changing your eating habits, having trouble sleeping or concentrating, and thinking about suicide or death. If you have five or more of these signs and they last for two weeks or longer, you may have PPD. Sometimes mothers of preemies develop postpartum depression as a result of the severe stress and anxiety experienced by having a premature baby. Even fathers of preemies can become depressed.

What can help?

There are many ways to feel better.  Treatments for depression may include all or some of the following: healthy eating, regular sleep and exercise, talking with friends, family or a professional counselor/therapist, lowering your stress by taking time to relax and avoiding alcohol. In addition, your health care provider may give you medication specifically designed to help with depression.

Talking to other parents who have gone through the NICU journey can be very helpful. The parents on the March of Dimes’ online community, Share Your Story, “talk” to one another and share their experiences. It is a comforting and supportive community, where all NICU families are welcomed.

When will you feel better?

The length of time a parent feels down, anxious or depressed can vary, and may depend on the health of your baby, and the length of NICU stay. But usually, parents of preemies begin to feel more balanced as their baby grows, and “by the end of the baby’s first year, their psychological distress, on average, has been found to be similar to those of mothers of term babies” according to the Preemies book. But, each baby and NICU stay is unique, so each parent’s journey to feeling better is unique.

Bottom line

Having a baby in the NICU is extraordinarily stressful and difficult. You need to take care of yourself in order to be able to take care of your baby. It is important to be aware of the signs or symptoms of depression and to speak with your health care provider if you have any concerns at all.

The sooner you seek help, the sooner you will feel better.

 

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. You can also view the Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Resilience. When struggles can be a good thing.

Wednesday, November 5th, 2014

woman looking at crystal ballWouldn’t you love to have a crystal ball that could show you what your child will be like when he is an adult? Would his disability define him? Would he overcome it to succeed and realize his dreams?

Last week I met several graduates of the school my daughter attended when she was a young girl. This school is specifically for children with diagnosed learning disabilities. Graduates returned to talk to parents of current students about life after school – their struggles and their triumphs. The audience was inspired by their resilience and impressed by what they overcame to be successful. Throughout the years, I have attended many programs like this one, and met countless other graduates. The positive messages that resonated from all of the graduates were that they learned valuable lessons from struggling with learning disabilities. Those lessons served them well, as they learned how to be resilient.

Resilience.

According to Merriam-Webster Dictionary, resilience is “an ability to recover from or adjust easily to misfortune or change; the ability to become strong, healthy, or successful again after something bad happens.” The ability to keep trying to succeed despite repeated failures exemplifies resilience. Getting back up after being knocked down – getting back on that horse – is resilience. The adults at this program told stories of struggles during childhood that brought tears to my eyes, but now their courage, confidence and sense of self was plainly evident. One panelist said he would not trade in his learning disability for anything. It taught him important lessons in his life; it made him stronger.

Resilience.

All the panelists mentioned that they initially did not know how to learn, study, or organize themselves due to their learning disabilities. They gradually acquired strategies and went on to be successful in high school, college and many even went to graduate schools. For example, there was a doctor, real estate developer and investment banker on the panel. They recounted their battles learning to read, write, count, add or divide. Yet when they went to high school and college, they had such good study habits and academic discipline that they did not struggle in ways that their peers did. One panelist recounted how her medical school classmate would “fall apart” when he got a “C” on an exam, while she knew enough to know that that one exam did not define her future; she would just pick up and keep on going.

Resilience.

This was the theme over and over again. Kids with learning disabilities work harder than those without disabilities to reach the same level of achievement. They learn early on that they may fail but if they keep on trying, they will also succeed. Often they need to be creative and use another road to get to their destination. They learn how to shift gears, ask for help, and advocate for themselves. This stick-to-it-ness helps them in all of their challenges or struggles later in life.

Resilience.

If your little one is struggling with disabilities now, know that there are many “success stories” out there. There are countless individuals who have learned to overcome their challenges and figure out a way to reach their potential. Your child may not go through the front door – but the side or back doors may still get him where he wants to be.

And, picking up a little resilience along the way will be the unexpected icing on the cake to help with the future hiccups of life.

 

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. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

The special language of special needs

Wednesday, October 29th, 2014

kayak without a paddleIf you have a child with special needs, you have no doubt heard tons of words, initials or acronyms that you did not understand. You may have had to stop and ask for clarification or a definition. Or, even worse, you did not ask and were lost as the conversation zoomed on and you kept trying to make sense of it all.

The world of special needs, including delays, disabilities, early intervention and special education, has its own language. The sooner you familiarize yourself with the many acronyms, the easier it will be to navigate your child’s world and be an effective advocate. Without this info, it is like being in a boat (or a kayak) without a paddle.

Just to drive my point home, here is an analogy. Would you ever take an upper level language class without first taking the introductory course? Would you take Algebra II without first taking basic math? Would you take your driver’s test without looking at the manual first? You’d be lost (or at least I would be), and nothing would make sense to you. This is why you need to get the basics down, especially before you go into meetings that pertain to your baby or child’s intervention services.

Help is here

Here is my blog post with tons of acronyms to use as a cheat sheet. It is appropriately called Learning the Lingo.

Next, you can find many more on the CPIR website, where the NICHCY materials have migrated. Their Alphabet Soup has an exhaustive list of words with their meanings.

Lastly, Words and terms – a whole new world breaks out the terms pertaining to early intervention and then for special education.

So check them out, click on the highlighted terms to learn more, and print out the acronym sheet for your reference. You’ll be glad to have this info in one tidy place. Then, when the conversations turn to IFSPs or LREs, you will know exactly what everyone is talking about. Soon, you’ll be paddling upstream with confidence!

 

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. You can also see a Table of Contents of prior posts, here.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Halloween ideas for kids with food allergies or sensory challenges

Wednesday, October 22nd, 2014

pumpkinWhen you hear the word “Halloween” do you think of candy? Chocolate? Fun costumes? For children with food allergies or sensory issues, Halloween can be a frustrating evening. The thrill of getting treats can quickly become a letdown if there is nothing that your child can eat. And, the thought of wearing a costume may be the last thing your sensory special child will want to do.

Non-foods gain in popularity

Years ago, in my neighborhood, we knew of a child on our street who had food allergies. As a result, some moms decided to have an assortment of other acceptable treats to give out, so that the child with food allergies could enjoy Halloween, too.

We offered the kids non-chocolate choices, such as bags of pretzels, crackers and pops. But, surprisingly, the most popular alternatives were non-food items. Crayons, tiny notepads, little cars, plastic jewelry, glow stick necklaces, stickers, and other inexpensive but fun playthings soon became an equally desired treat for many children. I was surprised to see kids who did not have food allergies choosing stickers instead of a chocolate treat. Their eyes lit up when they saw my bucket filled with non-candy gifts. The best part is that you can get most of these items at dollar stores or discount centers, so offering alternatives won’t be a costly venture. Just be careful that you do not get tiny toys, as they can be a choking hazard to small children.

My colleague here at the March of Dimes said that the “best” house for trick or treating in her neighborhood was the one where they gave out quarters instead of candy. She and her friends loved it, as they could buy whatever treat they wanted. (But again, be careful you don’t give coins to young children as they are liable to put them in their mouths.)

When you stop to think, it makes perfect sense to widen the net of Halloween treats. Food allergies are becoming more common, so offering non-food treats is a perfect way to keep Halloween safe and yet be tons of fun. Why not think about offering non-candy treats this year and start a whole new tradition? But watch out – you may well end up being the most popular house on the block for trick or treaters!

Can’t wear a costume?

Little Red Riding HoodIf your child has sensory issues and can’t fathom the idea of putting on a costume, don’t fret. Just yesterday, a little 2 year old in my neighborhood toddled by my front steps as I was sitting there enjoying the sunshine. Her mom told me that she is sad because her daughter refuses to even try on a costume. I suggested she create a “costume” out of her regular clothes. For instance, if she has a red dress or a red hoodie, she can carry a little basket and be Little Red Riding Hood. (True confessions – I did this for my daughter when she was about that age!) Here are more ideas on how to prepare your child with sensory challenges for Halloween.  Also, you can ask your child’s Occupational Therapist for specific ideas that can make him comfortable.

Just remember, the most important thing is that your child is comfortable and safe, and has fun on Halloween.

What tricks have you tried to help your little one have fun on Halloween? Please share.

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. You can also see a Table of Contents of prior posts, here.

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