By Eileen Braun, Executive Director of the Angelman Syndrome Foundation and mother to a young lady with Angelman syndrome

Eileen Braun

It’s not just about getting through and surviving the holidays, we all want to truly enjoy our time with family and friends. How do we balance all that we think we need or want to do and still enjoy the holidays? We hope these holiday tips will help to keep you a little more relaxed and less stressed this holiday season.

Have a plan and set realistic expectations.

Decide what is important to you and your immediate family. The “Hallmark” holiday we see on TV in reality most likely does not exist. Be selective and choose those invitations that are most important and special to you and your family. Perhaps celebrating the actual holiday with just your immediate family is just the ticket to keep the special holiday more manageable and less stressful and other family and friend events can be attended outside of the immediate holiday. Try keeping the guest list to a manageable minimum so the day doesn’t become overwhelming for everyone. Try a few small gatherings on different days rather than one large, overwhelming gathering.

You know your child’s stressors, triggers and anxiety points, so remember to be a good observer and head things off before they get to the point of no return.

Don’t be reluctant to be the last ones to show up (just call ahead if you are running really late) and it is fine to be the first ones to say thanks for the eggnog and goodbye if that will help make your visit more enjoyable.  Watch for subtle, escalating, non-verbal cues your child is communicating to you and others that s/he is becoming anxious and/or overwhelmed. Intervene with a break or calm, quiet private relaxation time and ask your individual when s/he is ready to join the gathering again and honor her/his request.

Don’t forget your routine.

Our children typically do best with structure and routine. Cookies and milk may well be a part of the holiday season, but eating well, getting enough rest and sticking to routines will help everyone in your family enjoy the holidays. Don’t let these routines get away from you completely, as they will be harder to re-establish once the holiday season is done.

It’s OK to take a break.

If you are hosting people at your home and your child is feeling overwhelmed or is in need of some time alone make sure s/he has a safe place for some quiet, down time. When you are visiting friends and family, talk with the hosts and identify a quiet space where your child and you can “escape” when s/he is feeling overwhelmed or in need of some quiet or alone time. Also be sure to ask about any house rules (like no food in the bedrooms) that will make the visit less stressful for all.

Clothes don’t make the child. 

If your child is sensitive to certain types of clothes, or just stubbornly insists on wearing something you (or, you suspect, someone else) will find inappropriate, don’t pick a battle with all of the other potential stressors during the holiday season. While eyebrows may raise if your child isn’t dressed to the nines, the goal is to start your child out with as low a stress level as possible. Fussing over clothes, or putting her or him in clothes that you know will cause anxiety, is a tough way to start.

Augment the menu. 

Whether you’re bringing a little something to someone else’s gathering or planning the gathering in your own home, make sure there are a variety of items your child will enjoy eating, especially if your child is on a special diet such as the L.G.I.T. The goal of the day isn’t cleaning your plate or trying new foods or pleasing the cook. It’s making sure your child is well-nourished, sticking to her/his diet and, more importantly, it’s about giving thanks for the good things in our lives.

Remain calm. 

Memorize this phrase, and repeat it over and over in your head whenever you feel yourself losing your cool: I do not have to apologize for being a good parent to my child. We may struggle under the weight of “advice” or disapproval from family members, but our kids don’t care about that: They need what they need. You know best what your child needs, and providing it is your most important responsibility, no arguments. Since most children with special needs react poorly to stress in their environment, particularly stressed-out parents, staying relaxed and low-key is one of the best things you can do to keep your child’s behavior in line. You can always throw a tantrum when you get home.

No martyrs here.

Don’t be afraid to ask for help or ask for a break—even if it is for 15 minutes or a couple of hours. Ask a friend or relative who understands and is familiar with your child to keep an eye out and engage her or him regularly. If you can line up a few people to take turns, nobody will miss too much socializing time. It’s not about things being perfect it is about time well-spent with those we care about and love.

Give plenty of praise.

If your child is doing a great job handling party stress, give her or him lots of positive reinforcement. Compliments, high-fives and hugs go a long way toward keeping good behavior coming. A happy child makes for a happy party, and that’s a pretty good goal.

christmas gift4

What to do about gifts.

If you are like many families, you have a house full of toys from relatives that your child has no interest in playing. So how do we get our families to purchase gifts our children are sure to enjoy? Point your family in the right direction by creating a list of items and email it to your relatives along with the link to the store and the product number. Make it as easy as possible to purchase the item. Look at toy catalogs from the perspective of your child’s strengths and challenges. What toys seem visually stimulating? What toys have a hands-on tactile look to them? What games promote word recall? What games include player interaction? What games help foster conversation?

As our children get older, the challenge is that the things that once interested them no longer do—and that is a good thing because they are growing and maturing and developing new skills and interests! Remember, too, that it is not the quantity or equality of the gifts, but finding those gifts that are most meaningful to our children with Angelman syndrome. Perhaps a special holiday pillow, comfy blanket, special cuddly sweatshirt or item that your individual can identify with will have particular significance and meaning for her and will quickly become a favorite, treasured gift that reminds her of this special holiday!

Gift Giving Time.

Any one or more of these scenarios may describe your child with Angelman syndrome. Here are a few helpful hints if:

~Your child is unable to open presents

Relatives love the excitement of seeing the youngsters open their presents but your child is unable to do so.  Earlier in the day, before the melee of gift giving starts, you might ask each relative to spend time with your child and open the present for him.

This will be more meaningful for both your child and relative.

~Your child is uninterested in opening presents

Even if you open the presents for your child, he doesn’t acknowledge that they are there. What do you do?  Open the presents at home. Your family might be disappointed but tell them that he is so interested in everything else that he just can’t focus on the presents. Tell them that he will enjoy opening and playing with his gifts in the quiet of his home.

~Your child is interested in unwrapping presents but not the gift

For your child it’s all about ripping the wrapping paper. He doesn’t even pay attention to the toy.  Take note of who gave which present.  On a later day when your child plays with his toy, take a picture to send to the relative to say thanks. Another suggestion is to ask some relatives ahead of time if your child can help open their presents. Your child can look forward to Grandma inviting him to open the presents for her.

~Your child focuses on one present

Your child has a mound of presents but stops after opening the second present. Let him open his presents at his own speed. You might end up taking half of the gifts home with the wrapping still on them and that’s okay. Let him open the rest the next day.

~Your child is overwhelmed at everyone opening presents

Your child may be overwhelmed by the chaos of everyone talking at once and tearing the wrapping paper off their presents.  If this sounds like your child, it’s okay to go to another room and watch a holiday TV show while the rest of the family opens presents. Another suggestion is, earlier in the day have your child, at her leisure, present each relative with a gift. Your relative may also decide to give her present to your child at this time. Now your child can give and receive a gift in a relaxed atmosphere. In a half hour, go to another relative and do the same.

Special Tips for Travelling Families

Medications and Medical Records
Gather your child’s medications and a copy of his or her medical records. Make sure you have enough refills for the length of trip and a few days extra in case of inclement weather.

Medical Equipment

If you are traveling with medical equipment such as a wheelchair or oxygen make sure to visit the TSA’s web pages on medical devices and Assistive Devices and Mobility Aids. These pages will be very helpful in guiding you through security at your local airport. Call your departing and arriving airport to find out what guidelines they may have. Upon arrival some of your checked medical equipment may be offloaded at a special baggage claim.

You may also need to contact your airline (by phone or web) to find out how they handle medical devices that are carried on board or checked in.

In Case of Emergency
In case of emergency make sure you find a doctor at your destination that will be able to provide temporary care. Ask your pediatrician for a referral Safety – Wandering Individual

If your child is a wanderer, consider a temporary tattoo http://www.tattooswithapurpose.com/ or purchasing a child tracking device before you travel: http://www.lok8u.com/. In case your child becomes lost, it is helpful to have a recent photo and a written description of your child’s special needs (Will she respond to her name?  Will he run away from strangers?).

plane

Before You Head to the Airport:

Call the TSA
The TSA has a helpline for individuals with special needs. Call TSA Cares. Travelers may call 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. When a passenger with a disability or medical condition calls TSA Cares, a representative will provide assistance, either with information about screening that is relevant to the passenger’s specific disability or medical condition, or the passenger may be referred to disability experts at TSA. TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager located at the airport when necessary.

Small Bills
Whether it’s the taxi, airport shuttle driver or the skycap, make sure to get all the help you can. Bring plenty of small bills to tip anyone who is helping you out.

Check-In at Home
Don’t wait in another line at the airport! Print your boarding pass at home or check-in via your smart phone. Save yourself the hassle!

Have a backup plan
Weather, mechanical issues, missed connections or late arriving flights can wreak havoc on your carefully laid plans.  Make sure you make plans for a one hour delay, multiple hour delay or a complete cancellation. Have a social story ready that will visually tell your child about the delay and what may happen next.

Take a deep breath and smile 
You have spent time planning and preparing. The day is finally here. Take a deep breath smile and enjoy this special time with your family!