Happy Holidays RettGirls!
With the Holidays upon us we wanted to give some advice for Parents, Friends and Families of RettGirls on how to handle the holidays,visiting,gifting and including the girls in your life!
Year after year we hear stories from parents who are just beside themselves with the stress of the holidays. From family who don't know how to interact with their girls, to not knowing what to get them. I have had several parents tell us that they are ignored or not included.
Our Mother site Girl Power 2 cure has come up with some great tips on how to handle the holidays with ease and we'd like to share them with you.
Stress and Inclusion
The biggest thing to overcome during the holidays is just pure stress. Everyone
out there feels it, but when you have a disabled child thrown into the mix, stress
can rise to a whole new level. Stress of disappointment over your daughter’s
condition, stress of your daughter’s anxiety as the routine and activity level
changes, stress of how family and friends act towards her, stress of travel, stress
of food choices. Mix this in with some certain lack of sleep and it is a recipe for
disaster.
So, think about changing things around, being more open to doing things
differently, and being more open with those around you about what they can do to
help make this holiday a more positive experience. Do not try to fit your daughter
into your traditional routine. It is time to make some new traditions, keeping her
needs in mind.
Handling anxiety and sensory overload --
two key issues for Rett girls.
Anxiety often comes from not knowing what to expect. Talk to your daughter about
events coming up several times before they happen. Explain to her where you are
going, who will be there, what will happen, and what is expected of her.
TIP: Consider bringing along a portable DVD player with her favorite videos
as a fallback. Although it is heartbreaking to feel she is not included,
sometimes it is just better for her to be engaged with something familiar.
Sensory overload can strike us all. If your daughter can’t tolerate being amidst
all the festivities – gift opening, big dinner, singing, etc – be sure to have a plan for
her and talk with her about it.
TIP: Tell your daughter, “Today is a very special day. We have people
coming to visit. If you are feeling anxious, you can stay in your room with
your music or television. And then this afternoon we will have a special time
where each person will come to you and spend a little time with you and give
you a gift. I will help you give them their gift, too. Maybe we can even have
pictures of each person and you can pick you who would like to see and
give your gift to next!”
Creating a more relaxing environment:
Rett girls usually love twinkly lights. Consider having them in more places than
around the tree and outside. How about in her room?
Opening presents: Traditional paper gift wrap can be a nightmare. Rett girls will
get paper cuts and even try to stuff the paper in their mouths, so maybe someone
else handles opening for them. But imagine the combination of loud ripping paper
and someone else opening your gift?
TIP: Wrap her gifts in fabric. Even if it is just one of your colorful T-Shirts
with a big bow! It will look pretty, feel soft, and it will be quiet – and she can
actively help open her own present!
Help from visiting family members and friends:
This is a great opportunity to be a really big help! Even just 5 or 10 minutes here
and there with your special Rett girl will be very welcomed. Consider these things:
Read her a book.
Brush her hair and put pretty bows in for her.
Help feed her.
Take her for a walk.
Give her a foot massage.
Listen to some music together.
Sing her a song.
Tell her a story from your past holidays.
You can find this and many other tips at:
http://www.girlpower2cure.org/holiday-tips.html
Happy Holidays from All of us at RettGirl and GirlPower2Cure.org!
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