Posts Tagged ‘special needs child’

Recognizing families who care for preemies

Wednesday, November 9th, 2016

Preemie on oxygen_smIn addition to November being Prematurity Awareness Month, it’s National Family Caregivers Month. These two themes go together well. Caring for a premature baby can take a huge toll on parents and families. The focus is on the baby (naturally) which can be a round-the-clock roller coaster ride. But, who cares for the parents and other children?

Recently I attended a meeting for parents of special needs children. The common theme that day was coping. Parent after parent talked about the impact that one child can have on an entire family. When medical issues are present, as they are with a preemie, it is understood that everything else stops while you care for and make serious decisions related to your baby. If you have other children, they take a temporary back seat to your sick baby. Everyone pitches in to do what they must do to survive the crisis of a NICU stay.

Once the baby is home, the crisis may seem like it is over, but often it is only the start of a new journey – one with visits to more specialists than you knew existed, appointments for speech, physical,  occupational and/or respiratory therapy, a schedule of home exercises, and navigating the early intervention system. Thankfully, these interventions exist to help your baby, but it is clear that this new schedule can resemble a second full-time job.

If a parent is alone in this process (without a partner), it can be all the more daunting. Without a second set of eyes to read insurance forms, or a second set of hands to change a diaper when you are desperate for a shower, it can feel overwhelming.

What can you do?

This month is a good time to remember to reach out and ask for help. Friends often want to take a bit of the burden off of you, but simply don’t know how they can be helpful. Be specific with them. If you need grocery shopping done, send out a group text to your buddies and ask if anyone could swing by the grocery store to pick up a few items for you.

Try to set aside a couple of hours each week, on a regular basis, when you know you will have a respite. It could mean that your spouse takes care of the baby while you go take a walk or join a friend for coffee. Or, your parent or grandparent could take over for a bit so you and your spouse could watch a movie together. It doesn’t have to be a lot of time – but just knowing it is scheduled gives you something tangible to look forward to, which helps to keep you going and lift your spirits.

In other blog posts, I share ways parents can take the stress off. See this post for a list of survival tips, and this post for how to care for the brothers and sisters of your special needs child. They need special TLC!

Be sure to check out the Caregivers Action Network’s helpful tips for families as well as their useful caregiver toolkit.

If you are like me and have trouble relaxing, see “Stop. Rest. Relax…Repeat.” It may just inspire you to break the go-go-go-all-the-time pace and find ways to relax. Believe me – once you grab those precious moments to refuel, you will be glad you did. Your body and mind will thank you, and so will your family.

Do you have tips for coping? Please share.

View other posts in our Delays and Disabilities series, and send your questions to AskUs@marchofdimes.org.

 

 

Vacationing with a special needs child

Wednesday, July 10th, 2013

family-on-vacationWhen you have a child with special needs, taking a vacation can be a challenge. Often a child with a delay or disability does not like change of any kind – he may find it particularly upsetting and anxiety producing. So, removing him from his own bed, room and home can be difficult at best. You are going into alien territory…soooo scary! It may make you wonder if going away for a weekend or week is even worth the effort. But, with a little planning ahead of time and a few strategies for the road, it can usually be done successfully.

Prepare ahead of time

If you know that your little one dislikes change, it may be necessary to prepare him for what is to come. Whether or not your child can understand verbal language, create a photo that shows your child and all family members at your upcoming destination. You can do this by printing out a photo of the place where you are going, and then putting individual photos of your family on top of it (kind of like playing with paper dolls). Help your child participate with this task so he actively sees himself at the place.  If you have a photo of the room where he will sleep, it may help for him to place himself on the bed. Tell the story of how you are going to put all of his things in a suitcase and go on a happy trip to this new place.

When it comes time to leave, be sure that your little one “helps” you pack his belongings. Start the process several days beforehand and leave the open suitcase in his room on the floor, so that he and you can place special items in it.  Don’t forget the special stuffed animals or dolls, blankets or whatever comfort item your child loves. These will be very important transition items when you arrive at your destination; they will help him to associate “home” with his new surrounding.

Be sure to pack some of his favorite foods. Don’t assume that you will be able to find the staples that he likes in a new grocery store. Often, brands are different. My daughter used to eat only one brand of American cheese and could taste the difference if I substituted.  By having a supply of consistent foods, you provide stability and comfort.

On the trip

If your child struggles with language (expressive or receptive), does not talk yet, or is non-verbal, you may be familiar with a communication picture book. This is a notebook that contains small photos or images of common items, such as his bottle, pacifier, specific toys, certain foods or snacks, a bath tub, your car, clothes or outfits (for getting dressed), pajamas, his bed or porta-crib, stroller, etc.  You help your baby, toddler or child get through transitions by pointing to the image of what you are about to do. Likewise, you can encourage your little one to point to the item that he needs (eg. he may point to his bottle when he is thirsty).  Going to new places can be especially scary for a special needs child. The more ways to encourage communication, the less frustrated and scared your child will be.

Often children behave one way at home and another way on the road. If your usual routine is upset, your child may act out. Positive rewards can go a long way in shaping behavior.  But, you need to figure out what “reward” works best for your child. One example is to use a sticker chart (where a star or sticker is placed on a chart for every positive behavior).  Another idea is to bring along a bag of surprises for your child to give as rewards for compliant behavior. For example, if your child is a toddler and has trouble allowing you to dress him, offer a “prize” for getting dressed without tears or tantrums. A tiny new item given as soon as he complies can go a long way in making him feel good about himself and may help you avoid an exhausting tantrum.  (Dollar discount stores are excellent places to stock up on tiny, fun items for this purpose.) If you already have a behavioral system in place, try to keep it going while on vacation. CONSISTENCY is the key.

Where should you go?

Thanks to the internet, you can find almost anything at your fingertips. Here are some suggestions:

• Here are tons of travel tips, including 32 vacation destinations for families with special needs children, and a review of the best places to go.

• The Society for Accessible Travel & Hospitality offers tips and resources, including an article on their 10 Golden Rules of Autistic Travel.

• And here are 101 Things to Do When There’s Nothing to Do -Emergency time-wasters for planes, cars, lines, and waiting rooms.

Bottom line

Traveling with your special needs child may involve a good deal of foresight and coordination, but it may also bring you extra joys.  The up-side is that the stimulation and family togetherness may help your child make developmental strides. My daughter’s language used to soar after a vacation. Her speech therapist encouraged us to take her on weekend jaunts as frequently as possible to help stimulate language development. The extra planning and care necessary to help my daughter with the transition from home to hotel was well worth it.

Have you traveled with your special needs child?  Have any tips you’d like to share?

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 under “Categories” to view all of the blog posts to date. As always, we welcome your comments and input.

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

An easy way to find resources for special needs kids

Wednesday, June 5th, 2013

computer-mouse_thmFinding the right resource to help your child with special needs 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 is no longer in operation, but their information has been migrated to the Center for Parent information (CPIR).  Here you will find tons of information that should be bookmarked on your computer.

On this page you can find a gateway to resources are specific to a particular topic. There are dozens of topics 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.org.

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.