Tuesday, November 29, 2011

Some "Tips" for the Holidays

With December upon us, and holiday decorations sprouting up all over, we are all gearing up for a special season. Yet, 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.

Make this holiday a real team effort. Start talking with you family now about ways to help.

And be sure to check out our Holiday Gift Idea List! Happy Holidays everyone!!! I hope you each find that magical moment that makes your heart skip a beat and brings a smile to your face.

- Ingrid

Monday, November 21, 2011

RettGirl. We've Got that!

Good Day RettGirls!

Over the last week or so while viewing other Rett Syndrome Support Boards or while on Facebook I kept noticing a trend. Is it possible people really don't know about RettGirl?

Over and over I watched as people asked advice on what to get their daughter for the holiday. We've got that! Find a wonderful list and links to lists past by clicking on our Holiday Gift Ideas button on our Homepage.

Just moved to a major metropolitan area and are at a loss about where to find a Doctor or Clinic near you? Chances are we have that. Just click on Doctors/Therapists at the top of our Homepage.

It doesn't stop there - we have one click access to EVERYTHING Rett. Don't see what you need? Send us your question or info you would like to see! We want to keep everything organized and searchable so more families can learn from our Rett community.

We have tips from parents just like you.

We have product reviews on:











The list goes on and on.

Do you need ideas for apps for an iPAD? We have a button just for that where you will find
Link apps, accessories and more.

Would you like to see videos of our girls thriving and achieving? We have that!

What about a place just for school stuff where everything you need is all in one place?


Care Notes

Example IEP's?

From Constipation to Communication, we have all that and then some at RettGirl.org!

Come visit us today and share with your friends, coworkers, and staff!

Have a great week everyone!

Terri V~For RettGirl

Tuesday, November 15, 2011

Gluten Free Goddess

Good Day RettGirls!

This week at RettGirl.org we are featuring this incredible blog called Gluten Free Goddess! We have this website listed under Gluten Free in our Diet/Nutrition Category!

Last year I struggled with including my daughter in our Thanksgiving Meal because we had just found out she was allergic to wheat. At the time I had no idea how to cook or bake without wheat/gluten. Especially for a meal like Thanksgiving Dinner. Rolls, Pie, Noodles. What about Abby? Would we just sit and eat in front of her?

Gluten Free Goddess is THE place to go for everything Gluten-Free. This week she is featuring Gluten- Free Thanksgiving Recipes and Tips. We aren't talking a pie and roll recipe either. She has absolutely everything.


Tips from the Gluten-Free Goddess:

Key Tips for a Safe and Delicious
Gluten-Free Dairy-Free Holiday Season

If you're new to gluten-free living here's a Gluten-Free Diet Cheat Sheet to print out and keep handy. Because gluten is devious. Label reading is a must.

Marinades and soy sauce, broth and bouillon may use wheat or barley in flavors and seasonings. Although I urge you to check your turkey for gluten-free status, most I've seen are safe- if you avoid the seasoning or gravy packet.

Bottom line?

Know your bird. Know your source. And know your ingredients.

For thickening gravy, whisk in a tablespoon or two of sweet rice flour or an arrowroot starch slurry. Potato flour is another choice- but be careful you don't add too much and end up with gravy you have to slice and serve.

For a non-dairy sub in pumpkin, squash and sweet potato recipes try using coconut milk- it's creamy and delicious (full fat tastes best). If you can't do coconut milk, soy milk works beautifully. Or try one of the neutral tasting nut-based milks, or even hemp milk (though hemp milk is an acquired taste and may be too grassy for the uninitiated). Rice milk is generally too thin.

Another tasty non-dairy vegan choice is orange juice or apple cider. I cook carrots or cubes of winter squash with a splash of orange juice or apple cider for a lovely flavor boost. Then I drizzle a touch of pure maple syrup.

For creamy mashed potatoes that are dairy-free I use a light and fruity extra virgin olive oil instead of butter. I add a little of my favorite vegan butter spread for flavor (I'm using Earth Balance lately). If I want to add creaminess, I whip in some warm non-dairy milk- coconut, soy, and nut milks all work. A light gluten-free broth works, too.

Read more: http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html#ixzz1dmnYxW3G


Wow, so many simple things you can do. Who would of thought? Incredible tips! Want more? How about some Thanksgiving recipes?

Thanksgiving Sides

Acorn Squash with Attitude
(green chiles)
Calabasitas (zucchini, corn and onions with green chiles)
Cider Roasted Vegetables
Cinnamon Applesauce
Colesalw with Peanut Dressing
Cornbread Stuffing with Curried Apples and Cranberries
Crunchy Gluten-Free Bread Crumbs for Topping

Dijon Roasted Vegetables
Karina's Kicked Up Colcannon
Maple Roasted Acorn Squash
Pinon Rice Bake with Artichokes, Corn and Goat Cheese
Pomegranate Glazed Green Beans and Portobellos

Quinoa Mushroom Pilaf
Quinoa Salad with Baby Spinach, Apples or Pears in Maple Vinaigrette
Quinoa with Butternut Squash + Cranberries
Roasted Winter Vegetable Ragout with Shaved Parmesan
Ruby Applesauce with Cranberries

Santa Fe Brown Rice Bake
Two Potato Salad with Sweet Potatoes
Zucchini Gratin

How about a few desserts?


Apple Crisp- new
Apple + Pear Crisp
Apple Cake with Cranberries
Coconut Flour Apple Cake
Cranberry Peach Crumble
Maple Frosted Pumpkin Cake

Pie Crust Recipes
Pumpkin Bars
Pumpkin Bundt Cake
Pumpkin Chocolate Chip Cookies

Pumpkin Cupcakes with Maple Cream Icing
Pumpkin Pie- easy
Pumpkin Praline Pie with Coconut-Pecan Crust
Sweet Potato Pie


What we have listed here doesn't even touch on the resources, tips, recipes you can find at Gluten-Free Goddess. Many Many Dairy-Free Recipes too!

We hope you enjoy! Have a Healthy and Happy Thanksgiving!


Terri V~For RettGirl

Monday, November 7, 2011

2011 Holiday Gift Ideas!

Good Day RettGirls!

It's here. What you all have been waiting for. RettGirl.org's 2011 Holiday Gift Ideas!

We have had many of you ask us about this year's list, and we are so excited about many things. I, myself, am having to hold myself back from purchasing most everything on the list. It really brings out the little girl in me just thinking about playing or using most of these ideas.

For example:

Barbie and Me Hair Extensions- Your daughter and her siblings and friends can have a great time mixing and matching hair extensions you make on your own printer at home!

Disney Princess Magic Learning Wand- Something pretty and fun for you daughter that can be integrated into OT therapy for hand use. Remember those neurons that fire together, wire together!

Light Therapy Full Spectrum Light- Beat the winter blues with proven light therapy at home.

Glow in The Dark Bubbles- Need I say more?

A ton of fun and useful things this year. We all had some favorites from years past so we linked our previous lists to this year's for triple the ideas for your Holiday shopping!

Have a great season everyone! Click on the links below to get started!

Air Chair
Barbie and Me Make-Your-Own Hair Extensions
Chantilly Lane Scrubs Bear
Color Changing LED lights
Disney Princess Magic Learning Wand

FIJIT Friend - Willa

Fleece boots
Flower Safety Glow Stickers
Free App - Scotty and Lulu Music and Games
Glow-in-the-dark Bubbles!

Laugh and Learn, Dance and Play Puppy

Leg Warmers by Baby Legs
Light Therapy Full-Spectrum Light
Littlest Pet Shop Dancing Dog
Massage / heated Cushion

My Keepon Dancing Robot

Polartec Winter Cape
Sesame Street Let's Rock Elmo
Shrinkins Wheelchair Decorations
Silly Bowling

Twilight Ladybug

Zoe's Dance Moves DVD

* And be sure to visit the GP2C Shop to get T-shirts, car decals, cinch sacs, music and cell phone skins!


Holiday Gift Ideas - 2010

Holiday Gift Ideas - 2009

The entire list can be found on our Home page and at Holiday Gift List 2011 where we also list HOLIDAY TIPS for a less stresful season.

Have a great week everyone!

Happy Shopping!

Terri V~ For RettGirl