"Bear Hugs, Headphones, Dora... and more Dora"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Today's post is by David Bousson, Leah's Dad

Rightly so, many people proclaim that “People First” wording is the correct thing to do for people with disabilities.

But there’s something different about Rett Syndrome and the families who live with it. We’re a close knit group, and we use Rett Girl, Rett Dad and Rett Mom as terms of endearment (Rett Sibling has never really caught on...). We’d all love to see Rett defeated, and we all know that these girls are so much more than their disabilities. Rett Girl has a certain strength to it. These girls put up with an astounding amount of difficulty in their lives, and yet their smiles continue to melt the hearts of those who take the time to receive them. 

When you join the Rett club, it’s painful. These girls go through so much that we can’t even comprehend. You watch this new person progress and then regress. They are crying, and not understanding what is happening to them. Doctors are consulted, often to the frustration of the parents, as Rett is not widely known (no, it's not Tourette's). 

Weariness

Your marriage will be tested, don’t doubt that for one minute. It’s hard. It changes the lives of everyone in the family. I wish I could say that it made me pull it together and become “Captain Awesome Dad,” tirelessly advocating and seeking out every opportunity to make the lives of those in my family better! But it’s been a struggle, and I have, in some ways given up. The best way to describe it is "weary." I only do what has to be done to make it through the day. Ambition and I have parted ways more often than not. Leah is 10, and I am just barely getting to a point where I feel I know who I am again. 

My wife, Tammy, is amazing. She has been there for Leah at every turn, putting aside her needs and wants to care for Leah's every need.  She keeps this family running, and I laugh when someone asks me if my wife works or stays home. She has made her career caring for Leah (she should have her doctorate in "Leah Studies" by now). I am continually fascinated and amazed by how she continues to do all she does. She deserves so much more than she often gets. But she is weary as well. 

All things considered, things are going pretty well. Leah has had two surgeries in the last 8 months, yes, but she is recovering. The smiles are returning once again. She's a charmer, with those beautiful eyes and that beaming smile. It takes a commitment on your part to find them at times, but once she see's that you're worthy*, they show up pretty quickly. (*Worthy: Being willing to wait for her to process your presence, and to let her body finally react.) 

Bear Hugs

We have a thing we do most every morning, when I say goodbye to her and go to work. It's called a bear hug. I grab her arms and wrap them around my neck while she's lying in bed, and make a growl-y bear sound as I give her kisses on her cheek and neck. Because of her hand wringing (typical in Rett), she then clasps her hands together, resulting in a hug on her part. She loves it, and I often feel her tightening her grip around my neck in the closest thing to a hug she can muster. But best of all is what happens on her good days. She growls back. And smiles. And laughs.

Being a Rett Dad is not easy, but I'll be the first to admit that I've got it pretty well off (again, all things considered). Divorce rates among families with disabled kids are really high. I've been blessed with my family, and I try not to take that for granted. I've had a hard time coming to terms with Leah and Rett. I have found many other things to do, when I should be playing with my kids. I feel guilty when I spend more time with my son Riley, and I find myself wondering what to do with Leah. 

I know what I need to be doing, which is just spending time with her. Talking with her, reading books to her, walking with her, playing with her. But often I don't. It's ridiculous, but it happens. There are only so many times I can try to do something with her, only to have something happen where she's in pain, or overly anxious, etc., etc., and then we have to cut the plan short. 

It's hard to explain. I just don't want to set my family up for another failed event. And it's not her fault. Rett Syndrome has taken this away, and I hate it for that. But I love the kid. It's a vicious cycle. Don't get me wrong, we still do things, and have fun. But that is always a lingering fear whenever we go somewhere. It's an element of stress that never leaves.

Riley, my 12-year-old son, has a heart for his sister, and for those like her. He doesn't even think twice about playing with the kiddos who are a little (or a lot) different. He just jumps right in there and starts playing. And it's so wonderful seeing the eyes light up as they are playing with him because he "gets" them. There are many days when we can't go out and do regular family things with him, and sometimes he really gets upset. But life goes on for him and for all of us, and we do what we can. 

Cinderella

When you watch your close friends describe what is going on in their "normal" little girls' lives, you hurt inside (Please though, rejoice in those stories of your kids, and keep posting them. I do indeed want to hear them, they are truly wonderful). The beautiful song by Steven Curtis Chapman called "Cinderella" is especially painful. Many a tear has been shed during that one. Your little girl won't do a lot of things, and you can get lost in the list of what she won't do when you start to think about them. 

But here's the thing. Your perspective needs to change. Focus on what she can do. Search for every little thing that she does on her own, and encourage it. Make a big deal about it. Those things are there, but they can be so difficult to find sometimes. 

Another favorite song, this one written by Rich Mullins, is called "Hold me Jesus" It's a beautiful song, written about those moments where you just need someone bigger than you and your situation to be there for you, and to hold you. 

I need to be that for both Leah and Riley, and that song serves as a nice reminder. Rett may have entered our lives, and it has caused it's fair share of troubles, but we have to do what we can to move through it, and give these kids the childhood they deserve.

Dora and headphones

Rett Syndrome has a soundtrack unique to itself. These girls can't talk, so they have to express their needs in other ways. One of the more common sounds in our house is "The Grinding Of The Teeth." If you've never heard this done on a constant basis for days on end, be thankful. 

And then there is the whining, when something hurts or something needs to be taken care of. I won't even try to describe it. Suffice it to say that it completely robs you of your ability to think. Security companies should study it and turn it into an alarm. It's that effective at stunning a person. 

We've quickly learned to run through a basic troubleshooting list: Are you hungry? Is it gas bubbles in the stomach? A diaper that needs changing? A change of scenery? The wrong Dora? Does your back hurt? What you don't think to ask is: Is there an eyelash in your eye? Does your scalp itch? (Sorry if I just made your scalp itch...) Did you want to go do that thing we promised we'd do today, but forgot since we brought it up yesterday? A leg cramp? Do you miss someone? Do you want to tell someone something that's on your mind? 

Yeah, it gets overwhelming. All the while, she's crying or whining because that's the only way to express the need. If all else fails, we resort to Dora and a pair of headphones. The headphones are for me because sometimes nothing fixes it, and I have to block it out to hang on to a few shreds of sanity.

How to help

So, now that you are thoroughly depressed... sorry. But here's the thing. All of you reading this can make a difference. Or maybe you have already. 

Learn about Rett Syndrome. Spread the word, donate money to research. Participate in a fundraiser. Raise money. Donate money. Yeah, I said that twice. It's that important. 

Scientists believe that they can reverse Rett Syndrome, and they are trying each and every day to make that a reality. But they can only do that with money. So give what you can, and continue to do so whenever possible. Because these kids depend on it. And on you. 

Be prepared for me to keep throwing donation opportunities onto Facebook, and please follow those links I post about Rett Syndrome, so that you can follow the amazing progress. I know you are doing so. I hear you telling me your stories: about the woman you met at a race who was wearing a Run for Rett shirt, and you stopped and talked to her. I hear you tell me about what you learned about Rett. And I enjoy the moment when you read the Purple Card I just handed you (ask me for one!), and learn one more thing you didn't know about Rett. Those moments mean a lot. 

(Here's her Girl Power page: http://girls.girlpower2cure.org/leahb. Did I mention donations? You can do that through her page...)

Thank you for your time, it means a lot to all of us. With your help, there will be a cure. 

"My Little Sweet Pea"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Today's post is from Chris Langan, Ilah's Dad
 

Sweet Pea, Stinkerella, Princess, Taparella, Sweet Ilah - these are just a few of my nicknames for my Ilah, who was diagnosed with Rett Syndrome when she was barely three years old.   She is eleven now and still the light of our lives.

My wife and I were barely into our thirties - and at the time the diagnosis was certainly a kick in the gut.  I found myself mourning for my daughter's future, as well as my family's - looking forward constantly into what life would be like in ten, twenty, forty years.

What we have learned, though, is that every day presents its challenges, many of them not even Rett related.  Living and dealing with in the moment is the only way to keep sane.  We have four kids now, and although Rett has changed the way we live our lives, it does not define our family.  It has become just "a thing we deal with," another one of life's challenges to be conquered.

Living with Rett has even managed to teach me a few things.  I have learned what it truly means to be a father.  Being Ilah's dad has allowed me to maintain a tenderness I might have lost with growing older.  It has taught me a patience and tolerance for others.  It has taught me that doctors don't know everything and it's okay to challenge them.  It has strengthened my marriage - my wife and I had no choice but to face these challenges arm in arm, or be torn apart.  It has taught me that the little stuff is unimportant, especially in the face of my child's health.

Ilah is the sweetest, happiest, most loving daughter I could've ever hoped for.  She loves to cuddle and be close (especially with me, she is definitely Daddy's girl). She loves to read and listen to music and watch TV.  She loves to play with other kids.  She is just a normal kid, who happens to have Rett; we are just a normal family, and we all love her so.

Chris

"A Really Real Hug"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

First up: Matt Greenlaw, Teagan's Dad. 

 

Teagan gave me a hug the other day. Not a Rett hug, where she sort of flops over on you, a -really real hug. She reached her arms up, wrapped them around my neck and squeezed. It was amazing. I’m pretty sure it was the first and only time she’s been able to do that. She knew it too. When she let go, I got her best smile, followed by a big fat kiss. Teagan kisses are a lot like being kissed by a St Bernard, sweet, affectionate, but wet enough that you might need a towel afterwards. It was our moment.

My Teagan is Daddy’s little girl. We have sort of a special understanding. I think we developed it some time during the hours and hours we spent walking around the house when she was an infant and wouldn’t sleep. T couldn’t master the bottle. When mom went back to work, she and I and big brother Reese were on our own every weekend, Teagan just couldn’t get that bottle to work. We tried dozens of different nipples, nothing helped. One night I threw her and Reese in the car, and drove over to the hospital so mom could breastfeed in the middle of her shift. Most nights we just walked laps around the house, with the bottle dripping all over until she FINALLY fell asleep. In retrospect, that may have been our first clue that something “wasn’t right” with our little girl.

By the time she was nine months, her mom was convinced that Teagan wasn’t developing normally. By twelve months everyone else agreed. By thirteen months the revolving door of therapists began making their daily appearances at the house. Sometime around eighteen months we woke up and found that Teagan couldn’t get the cheerios from her high chair tray to her mouth anymore. My now pregnant wife and I dragged Teagan and Reese to appointment after appointment with no answers in sight. We pleaded for Rett testing, Mom knew. It was the hands. At twenty months old, we found out. Rett.  My wife Danielle was home alone. I was out of town, visiting the Grandparents with both kids. Danielle was too pregnant to travel. Teagan’s baby brother Morgan was born two weeks later.

We never had time to process. We had a new baby. We had service coordinators to argue with. Therapists to recruit. I was just trying to stay on top of all the things there were to DO. I never really took the time to cry for what she has lost. I never had the time. Eventually, it hit me. Hard. Sobbing on the bathroom floor hard. And that grief, that sense of loss, it’s with me, with us, with our family every day. Our lives are forever altered. Our little girl is lost. She’ll never talk. Never say “I love you, Daddy.” She’ll never have a first date, never play soccer, never learn to drive, never get married, never be somebody’s Mommy.  She’ll never run, never swim, never ski, never go to the bathroom without help. Every single day that grief, that loss is still there, still fresh. Every time somebody asks that most innocuous of questions, “How are you?” There it is. You are not OK. She is not OK. It’s not ever going to be OK ever again.

There are bright spots. Rett has made, and continues to make my two boys into wonderfully compassionate and understanding little people. I know they will be better men for having had Teagan in their lives. There are some really, really wonderful people in the world. Like Dr. Sasha, who loves all our girls like her own, sees their potential, and has dedicated her career to helping our girls be the very best they can be. Like Sasha would say, “So they’re ready when the cure is found.” Like Kristie, our physical therapist, who has been there for every single victory, and every single loss in Teagan’s personal battle against her body.  And Leah, her teacher. When we had nobody available to give speech therapy , Leah came down to NYC with us, at her own expense, to learn PODD, and has helped Teagan not only to communicate, but taught her how to be a little girl, by having enough respect for Teagan to just play with her. We’ve met so many loving parents, so many loving families.

My Teagan has Rett syndrome. There are many things she cannot do. There are many wonderful things she can. She can communicate beautifully.  She has the amazing power to make you fall completely in love with her with her laugh. She is goofy. She likes to cuddle, especially with her Daddy. She is smart. She is strong, and very brave. When she smiles, she makes it all OK. She gives the biggest, wettest, sloppiest kisses ever. Freely. And this year, for Father’s Day, she gave me a hug. It was the greatest gift I have ever received.

Go Gluten Free - Pamper Your Rett Girl's Gut

Many of our Rett Girls have GI issues or "tummy trouble" as we like to call it. Rett Syndrome is a neurological disorder, and it has long been studied that the gut and brain work hand in hand.

Some Rett Girls have allergies found through blood tests, but when the tests all come up negative for allergies and your Rett Girl is still uncomfortable there may be an intolerance that can't necessarily be detected.  In fact, gluten intolerance has been linked to everything from autism to clumsiness to GI disturbances to headaches and many many things in between.

What is Gluten?
Gluten is a protein food in wheat, oats (there is some controversy over whether oats are gluten-free or not, typically oats are contaminated during processing so they are not gluten free unless they have the certified GF stamp), barley, rye and malt. It is also used as a flavoring, stabilizing and thickening agent in many foods. Gluten is one of the most difficult proteins to digest, especially for an already compromised digestive system. We encourage all of our Rett families to research for themselves and consider removing gluten from their Rett Girls' diets.

How do I Start a Gluten-Free Diet with my Rett Girl?
The first and most important thing to understand is that this is a VERY slow process. You need to wean off gluten very very slowly to lessen the "shock" to your daughter's system. Start with the basics. If your family has pasta once a week, consider using a gluten-free pasta in place of a wheat pasta, then maybe switch out the bread from a wheat bread to a gluten-free bread, then change out the cereal to a gluten-free cereal. Keep changing out foods just one week at a time until eventually all the grain has been removed from her diet. NOTE: Be careful when you introduce a gluten-free alternative that you do so with a "healthy" gluten-free food.  Yep, that's right, not all "gluten-free" foods are healthy despite popular opinion.  Keep in mind that whole grains are best so opt for items made with whole grain: brown rice, quinoa, spelt, buckwheat or almond (or other nut) flour.

Now it's time to work on the "hidden gluten" like the those in some deli meats, salad dressings, processed foods and condiments. These can get a bit tricky. Local health food stores are a GREAT resource. They usually have a large selection of items that are labeled gluten-free (GF). Now even large chain grocery stores are starting to catch on and typically have a designated area and sometimes even a whole aisle full of gluten-free foods. Check Amazon.com as well to save money on many items.  Look for the GF label if you're unsure if an item contains gluten or not.  Some items that may have hidden gluten are listed HERE.

Remember to start slowly and be patient, it make take 6 months or longer to start to see results in your Rett Girl. Look for less irritability, better mood, attention and focus, more consistent bowel movements, better sleep and clearer skin, but don't expect this all to happen overnight.

What Foods are Gluten Free:
It may surprise you to know that many foods that you are already eating are gluten free and you probably just don't know it. For starters, ALL fresh fruits and veggies are gluten free! Fresh chicken, meat, fish and eggs are also OK for gluten-free diets! For starches: try rice, potatoes and quinoa. Fats are usually naturally gluten free as well - butter, coconut oil and olive oil are all great gluten free options.  If you cook from scratch and use whole food ingredients, going gluten free is easy.  Or, maybe going gluten free will help you to use more whole food ingredients which is great for the whole family!

Some gluten-free snacks include corn tortilla chips and fresh salsa, potato chips and popcorn! Not a bad start right? Many other popular "gluten" foods have a gluten-free counterpart - think cookies, crackers, etc. many of these foods are now being made with gluten-free flour - but remember, just because they're gluten free doesn't mean they are "healthy." These are still "once-in-awhile foods."

Gluten Free Formula and Blended Diets:
For our Rett girls (and boys) that are tube fed a gluten free diet can be as easy as switching formulas.  Some options include Compleat Pediatric by Nestle and Peptamen Junior.  If you are or would like to start making your own homemade blended formula going gluten free is as easy as eating gluten free. All you need is to make sure that your ingredients are either whole gluten free foods or have the GF seal and then you're ready to blend away!  A great resource to check out is the Blended Food Resource Guide.  We strongly urge anyone who may be starting a blended diet to seek the advice of a registered dietitian to make sure that all of your daughters nutritional needs are being met.


Resources:
Thankfully we have LOTS of Rett families who are following a gluten-free diet, and they have helped us set up some great resources to share. We have everything from books to blogs to recipes and even tips on which restaurants cater to a gluten-free diet, and much more. These resources are great for those starting a gluten-free diet or even those who are seasoned gluten-free veterans.

If you are currently using a resource or have a great tip or recipe please share it with us, we would love to expand our resources!

By Bridget MacDonald, RettGirl.org Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.

We are Pleased to have a guest blogger today, Terri Oxender FROM Tadpole Adaptive Inc. talks about Equipment and Rett Syndrome.

TOP 5 EQUIPMENT CATEGORIES AND RECOMMENDATIONS FOR RETT SYNDROME

by Terri Oxender, Tadpole Adaptive Inc.

Therapists are often asked what equipment is generally recommended for a certain diagnosis. This is a very difficult question to answer on many regards. First, each child with a specific diagnosis presents with individual needs that are unique to them and their caregivers/families. Secondly, there is often great disparity between the levels of assistance children require within a diagnosis. The goal of this article is to try and steer caregivers towards equipment that has traditionally worked well for children with the diagnosis of Rett Syndrome.

Rett Girls! (via rettgirl.org)

Within the article, different equipment needs will be explored with recommendations made for children who are able to walk and/or require minimal to moderate physical assistance and for children who require moderate to significant assistance for postural support and to complete daily activities.  Equipment will be explored to look at special needs seating/positioning, bathing/toileting, mobility, recreation, and lifestyle.

The Rifton Activity Chair offers the ultimate in adaptive seating for school and home.

First, let’s explore seating and positioning. Seating and positioning for this purpose is defined as functional seating. It allows for activities of daily living to occur (i.e. eating, learning, sitting with peers and family, accessing the environment). The first seat that comes to mind is the Rifton Activity Chair. This seating system is extremely versatile and will meet a girl’s need regardless of the level of physical capabilities. This seating system is available on a stationary base or a mobile base, it has the option for a high-lo base to make transfers easier or be able to work at a variety of heights, and it has the option for tilt and recline as well as a wide array of positioning supports. One of the best features about this seating system is that it can be modified to meet changing needs by adding or removing the postural supports. This is truly a chair that is highly recommended.

Second, let’s discuss bathing and toileting. Within this category, first it has to be determined if one piece of equipment will meet all needs or if two separate pieces of equipment are required. Once this is decided, here are the recommendations for the different scenarios. For girls that require less physical support, a simple toileting support like the Columbia Toilet Support or the Rifton Blue Wave Toileting System may be all that is required. Girls that require more significant physical assistance may benefit more from the postural support and added features of the Flamingo by Snug Seat.

For bathing, a roll in/walk in shower is ideal but not always possible. If a roll in shower is available, the Rifton Blue Wave Toileting System or the Flamingo can be used for showering as well as toileting. It is a two for one. If the traditional tub/shower combo is the only option, then there are a few pieces of equipment that can help increase safety. Depending on the size of the child and their ability to assist with a transfer equipment can make a huge difference. If the child is under the age of 6-7 then a bath seat like the Leckey Advance or the Snug Seat Manatee will meet the needs of most children regardless of the level of physical involvement with the use of the positioning accessories. If a caregiver has a bad back and is unable to lift or if a child is larger and more difficult to transfer, the Robby by Otto Bock with theQuicklift II Bath Lift System may be the best bet as it is light weight and easy to store. The easy storage feature is a plus especially if the bathroom is shared with other members of the household. Another product that is also worthy of consideration is the Columbia Elite Sliding Transfer System. This system allows the caregiver to transfer a child into the system and then roll it into the bathroom. Once in the bathroom, the device attaches to a base that is in the tub and then the child and bath seat are slid across the platform into the tub. A hand held shower is all that is needed to complete the bath. The Manatee by Snug Seat also offers a tub transfer feature. Bath equipment can be especially difficult to figure out the best fit. There are many things to consider when selecting a piece of bathroom equipment beyond the child including the size of the bathroom, number of people using the bathroom, the doorway width (usually the smallest in the house) which can limit how the bathroom is accessed, the features in the bathroom (i.e. tub/shower, etc.) and how the bathroom is organized and laid out. If at anytime, help is needed to help determine which piece of equipment will best fit your individual circumstances, please feel free to contact Tadpole Adaptive for guidance and assistance.

Convaid and other companies make awesome adaptive strollers to meet a wide variety of needs

The third area is mobility. Within this section, the primary focus will be for partner assisted mobility devices for long distance mobility and for everyday use. Gait trainers are not being discussed within this article because each child may benefit from a different style and this equipment needs to be trialed with a therapist. Also, many girls walk better with hand held assistance due to a limited tolerance for holding onto the handles of a gait trainer. Now, let’s go back to themobility devices. For girls that are able to walk but just become fatigued with longer distances, a simple adaptive stroller is a great option. The Convaid stroller line has many features and options to choose from. The EZ-Rider is extremely light weight and offers the least postural support so it may be perfect for the families that would have infrequent use. For the families that would use it more frequently, the Convaid Cruiser is a great option to explore. It is positioned in tilt for fatigue management and offers additional postural supports. For girls that require the mobility device for the majority or all of their mobility needs an adaptive stroller is still a good option as long as custom supports are not required due to scoliosis or other orthopedic changes. The Safari and Rodeo by Convaid are great options to consider. Both of these strollers offer tilt and recline to meet posture and fatigue management needs.

Every girl needs a bike! Freedom Concepts, Rifton and others make Adaptive Bikes with tons of options for the safety, comfort and positioning for riders.

The next category to delve into is recreation. Within this category, we will explore options for the active family. Freedom Concepts is a company that specializes in adaptive bicycles. The great thing about these bicycles is that they offer a wide array of positioning options and the capability for the caregiver to assist with propelling to help decrease the risk of fatigue. An additional piece of equipment to consider is a jogging stroller which provides a comfortable way for a child to travel while parents and caregivers enjoy the outdoors. The Special Tomato Jogger is a great option for the smaller child (smaller referring to height) that collapses easily and is economical. Larger jogging strollers are available, but play close attention to the size and ability to fold.

Beds by George manufactures customized safety beds that can be configured specifically for a child’s needs!

The last category is lifestyle. This section refers to equipment that can just make life easier. The first piece to explore is a specialty bed. Beds by George is a company that has designed special needs beds with a wide array of features and accessories to give a family peace of mind at night. These beds offer multiple features including side rails, high-lo feature and furniture like design. Second, a car seat can be a must for traveling. For girls that need just a little more than the seat belt to be secured in the car, the EZ-On Vest is a great option to look at and is very economical. Girls that need a little more support to a lot of support while riding, the Recaro line from Thomashilfen is a great product family to consider. These products offer an optional rotating base to make getting in and out the car easier. Finally, fatigue management is a big consideration with Rett Syndrome. Many girls just need a place to relax and chill out. Preferably not on the floor, as this is very hard for caregivers to assist with getting up and down. The Chill-Out Chair by Freedom Concepts is a great option to explore. It offers postural support and envelops the child for optimal comfort. The best way to describe it is a comfy recliner for your child. It is available on an optional mobile base, with a tray and in a variety of colors and fabric options so that it can be included in the family room and look like a piece of furniture.

Dubbed “Alternative Seating” Freedom Concepts manufactures Chill-Out Chairs offering kids with special needs their own place to relax and unwind!

Now that all categories have been explored, comes the question, how will I pay for all of this?

The good news is that insurance will cover some of these items. Insurance will typically pay for 1 seating system or mobility system; the strollers and activity chairs are coded the same. Specialty beds are typically covered if proper documentation is provided, but it may be a long fight. Toileting systems and car seats are state dependent as far as coverage and bath chairs are typically not covered. However, waiver programs will provide funding for these systems. This can be a long process since it typically requires a denial from the primary insurance. Other funding options includeholding a fundraiser, contacting the local Lions or Kiwanis organizations, corporate programs like the Pepsi Refresh Project (not currently active), and the United Health Care Grant (one does not need to have UHC insurance to apply). If afundraiser is planned, please contact an attorney for special needs to properly establish a trust so that the funds can not be taxed as income which may potentially result in ineligibility for state funded insurance and waiver programs.

Lastly, Tadpole Adaptive understands the financial challenges that many families face. For this reason, Tadpole Adaptivehas developed two options to assist with funding for the necessary and much needed equipment. First, there is theTadpole Adaptive Registry. This is a special program modeled after a traditional gift registry. A family can create a web page and list the desired equipment, the cost and why it is important. The link can be shared with family and friends through social media and people can then directly donate money to the family and registry for the purchase of the equipment. It is a great way to answer the question regarding what to purchase for holidays and birthdays. For family members that may be less tech savvy the money can be sent directly to Tadpole Adaptive and it will be applied to the registry. Second, there is the 6 months same as cash option through Tadpole Adaptive. It can be difficult to come up extra money on the spot for a big purchase but when it can be spread out over a longer duration, it becomes possible to manage.

Tadpole Adaptive has a Registry Program where families can get friends and families to “Chip-In” towards Special Needs equipment.

Navigating the world of adaptive equipment for children with Special Needs can be extremely frustrating, overwhelming, and difficult. If even it becomes too much, please feel free to contact Tadpole Adaptive where we are always willing to provide unbiased information, guidance, and advice.

Easter!

It's time to fill Easter baskets again!  Don't worry, we've got LOTS of ideas for you!  And for an added bonus we've got some great new gluten free recipes for your Easter Brunch!

Easter Basket Goodies:

• Check out the Natural Candy Store where you can get all sorts of candy for any type of allergy, all with nothing artificial!  It's not "healthy" but everyone deserves a treat!   

•  Vitacost is also a great website to check out for healthier, allergy-friendly snacks that you can use to fill up those Easter baskets as well.   

•  Adaptive toys are always a hit, check out this Spinning Art or this great Remote Control Color Bug that your Rett Girl can use hand over hand. 

•  What about a theme basket?  Is your Rett Girl on an adaptive baseball team?  What about a mit and bat?  Does your Rett Girl ride horses?  What about filling her basket with all things horses and by a special helmet that she can take to therapy?  Dress up themed baskets and movie themed baskets would also be fun!

•  What about trying something new?  Has your Rett Girl ever been fishing?  If not maybe this spring/ summer is the time to take her.  Fill her basket with a cute fishing pole, tackle box and a card telling her she gets her very own fishing trip.  Or what if this is the year for her very first sleep over - either with a friend, a sibling, a special aunt or mom and dad!  You could fill her basket with new PJs, a movie, snacks, slippers, maybe even a sleeping bag or a blanket and a card telling her she has won a slumber party!

•  What Rett Girl doesn't love her ipad?  What about filling her basket with itunes gift cards, a switchamajig so she can use a switch with her ipad, and a switch or a special pillow/holder for her ipad like this Peeramid. 

•  Find a ton more toy ideas at our Rett Girl toy pages.

FUN BASKET PROJECT:  Grow REAL grass in your baskets this year! It you buy wheat-grass seeds, they only take about 5 days to grow a few inches, so you have plenty of time!


Now for the Brunch!  

• Gluten free Banana Bread or muffins:  These are so yummy you'll never believe there's only 1/4 cup of sugar in the whole recipe!
  
• Deviled Quac Eggs:  The substitute of avocado for the mayo gives them an extra nutritional kick!
  



• Breakfast Muffins:  These are so easy to make, kids love them and they're completely customizable, you can use every one's favorite add ins!  

• Raspberry and Coconut Cream Tart: Don't forget dessert!  This is gluten and dairy free AND no refined sugars!  Delish!

Happy Easter Everyone!