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Welcome!

Take a look around! We have a ton to share with you! (and please share with us!). Everything here is hopefully something that will help your little girl fight a stronger fight against Rett Syndrome. Check out our product reviews, tips from other families, resource guides and doctor/therapist list!

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Disclaimer

Rett Girl! is only a referral site. Proceed with caution before purchasing an item, trying a new therapy or any of the tips recommended by our users on this site. Girl Power 2 Cure, Inc. is not liable for unsatisfactory or harmful outcomes. Especially in referrals involving diet, supplements or therapy, please check with your doctor before proceeding.

Holiday Tips

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? I think I would cry too.

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.

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