IEP HELP!

Our second blog post for back-to-school is all about the IEP (Individual Service Plan).  Ugg, we even hate writing those dreaded three letters, but, fear not, we're here to equip you with lots of tools to get your Rett Girl all that she deserves from school.

Before even getting to the IEP planning stage, however, take time to educate your daughter's team about Rett Syndrome. Use this easy link to our Q&A for Therapists on the PediaStaff website to send out to teachers, aides, therapists, counselors, and even the school principal. The sooner they understand your daughter's complex issues along with her strengths, the sooner you will be able to develop a good plan for her.

IEP BANK:

The first thing you need to know about an IEP is what one looks like: what are some goals, what do other Rett Girls have written into theirs and what is really important to include?  We have a "bank" of IEPs that are organized by grade level.  Check out our IEP Bank HERE and get some great ideas.  Then, stop by our Example IEP goals and Objectives page HERE for even more ideas!

RESOURCES:

• A great book to read and pass along to your Rett Girls team is "Pathways to Learning in Rett Syndrome"  which offers accessible advice on the special education needs of girls with Rett Syndrome and is beneficial for both parents and those working with Rett Girls.
•  "Including Students with Sever Disabilities in Schools" is also a good book to reference when trying to push for inclusion with your Rett Girl.  
• Wrights Law has some amazing books to educate yourself on the ins and outs of Special Education Law, they also have a great website with additional resources and a list of dates and locations for their training programs.  
• For some quick and easy tips you can use and implement right now check out this great article from the Friendship Circle Blog 9 Steps to write an effective IEP for your child.  

COMMUNICATION:

Communication is always one of the biggest issues with our Rett Girls.  Our girls need to have a way to communicate, they have so much to say and need a way to express themselves.  We encourage you to push your school to allow your Rett Girl to utilize an AAC (Augmentative and Alternative Communication) device or system.  Apraxia makes it very difficult for our girls to be consistent which can some times be mistaken as them not understanding.  A couple great resource to use and pass on are Linda Burkharts Multi-Modal Communication Strategies for Children who have Rett Syndrome and this letter from RJ Cooper about Girls with Rett Syndrome.  These may help your team understand your Rett Girl a little better and may be helpful with setting up communication goals.  

SOCIAL GOALS:
Lastly, we all know how social our Rett Girls are so don't forget to include social goals in her IEP.  A great way to help her classmates learn about her abilities and understand her a little better is to send a letter home to the parents in your child's class.  This can help answer lots of questions and make your Rett Girl a little less intimidating to their peers.  We have a sample letter drafted HERE.  

Remember to take a deep breath, try to relax and know that as nervous as you are for a new school year to start your Rett Girl is equally as nervous.  Help her to ease into a new year by being confident about her goals and where she's placed.  If you need any assistance Rett Girl is always here to help!  

Back-to-School Shopping

Have you checked your calendar lately?  It's August!!  Each year our summers seem to go faster and faster, and before you know it it's back-to-school time!  No need to worry, we are setting up a series of blogs to help you get back to school quickly, easily and successfully!

One of my Rett Girl's favorite things to do is shop for back-to-school fall clothes!  Ok, I admit it, so do I! She's just so adorable and so easy to shop for!  In all honesty though some things are just either not so fun to shop for or are hard to find.  But, thanks to our wonderful Rett parents we've got you covered on the tough stuff!

Many of our girls wear AFO's and with braces you need a whole new set of socks, ones that are long enough, seamless and made of whicking material that breathes.

Check out these standard socks in colors that go with every outfit and are super soft!

Or if your girly is a bit more trendy check out these fun socks!

Now that we've got the socks, we need some new school shoes, right?

This website has shoes that are GREAT for fitting AFO's. They have all sorts of styles and sizes including lots of different widths as well as extra "deep."

Hatchback shoes are also great for AFO's.  They're super easy to get on and off with a back that opens up so you can just slide your Rett Girl's foot in.

And these Converse hightops are also a super fun shoe and are easy to use with AFO's or with our girls who don't wear braces but might curl their toes while trying to get a shoe on.  These shoes also open up in the back with Velcro closure so it's easy to slip her foot in and out.

Some of our girls have special clothing needs to make being at school a little easier.  Pants that are higher in the back because they are sitting in their wheelchair, or maybe a quick, discreet way to access a port for tube feedings or a little more room in the seat of their pants for diaper.  If your Rett Girl requires any of these check out this great site for lots of options and custom clothes.

Accessories are our FAVORITES!  And we've got LOTS of them!  

For cute and protective bibs check out Special Needs Creations.  Or if you are in need of new elbow immobilizers check out this site and buy bibs and arm braces that match!

Who doesn't LOVE bows and hair ties?  Check out Special bows for Special Girls for lots of cute hair accessories.

Does your Rett Girl get cold easily or have poor circulation?  Maybe try some leg warmers.  Check out Baby Legs for lots of different colors and patterns.

Maybe your Rett Girl has a g-tube? To protect the port site in a fun way check out Making Lemonaid for cute pads.  Or try Tummy Tunnels - they have adorable iron-on patches that provide access to g-tubes without damaging clothing.

Don't forget to check out our list of amazing Rett parents, siblings, grandparents and family members who sell some great products.  And, head to our Girl Power 2 Cure shop for some great GP2C items, of course!

We hope that we helped with make your back-to-school shopping a little easier and fun.  Stay tuned to our Rett Girl blog for more back-to-school tips and ideas!

20 Summertime Boredom Busters

Summer is an awesome time to relax, spend time with friends and family, and take a little break from school and work. However, come mid-July kids start to get restless, parents start to loose their patience and everyone is ready to be back on a schedule, right?  The limited mobility, hand function and communication makes it hard to find fun things our girls are able to participate in.  Here are some great tips to get you through that summertime lull with your Rett Girl!

1.  Summer Reading Program - visit your local library for a reading program where your Rett Girl can earn some fun prizes or check out this one from Barnes & Noble - you read 8 books to your Rett Girl (or if she can read you can have her do it) then fill in the form and take it to your local Barnes & Noble so she can pick out a FREE book!

2.  Museum - check out a museum in your area.  Kids' Hands-on museums are great!  Your Rett Girl may not be running around and interacting with every experiment, but she'll for sure be able to do some of them with help and it's a great learning environment.

3. Picnic Lunch - head out to your local park or just spread a blanket out under a tree in your yard.

4. Home camp out - All kids like to camp out! pitch a tent in your back yard if your Rett Girl is able to handle that, if not set up some blow up mattresses in the basement or the family room.  If your girl is on a feeding tube remember that the pole is mobile, wheel it into your room and sleep with her on blow up matresses or into siblings room so they can have a slumber party or have the siblings sleep in her room if that's where she's comfiest.  Just make it FUN!

5. Bonfire/smores - Head outside for the evening, set up a bonfire and make smores.  No bonfire outside? No problem, make them in the oven - layer graham cracker, chocolate and a marshmallow on a cookie sheet and broil in the oven until the marshmallow is golden brown, pull them out and top with another graham cracker - then enjoy it outside!  TIP - marshmallows are gluten free and check your grocery store for gluten free graham crackers.


6. Make your own sprinkler that you can push your daughter through in her wheelchair!  This is TONS of fun but you may want to set it up the night before, they say it takes a half hour but I'd give myself an hour for sure!  Instructions and supply list Here

7. Kids Bowl Free - sign up HERE.

8.  Visit an Adaptive Playground

9.  Go to the movies!  check out the deals at Cinemark theater if you have one near you.  Or, if your Rett Girl gets antsy at the theater check out Sensory Friendly Films that may be playing in your area.

10. Visit your local zoo

11. Mess-Free Finger painting - Check it out HERE!  Great for our girls who hand mouth, you don't have to worry about them eating the paint!

12.  Make an outdoor tent and read!

13.  Read a book and watch the movie.  It's always fun to read a book together and then go check out the movie to see how it compares.  One of our favorites is Judy Moody and the Not so Bummer Summer!  Grab the book at your local library then watch the movie on Netflix.

14.  Visit your local farmers market

15.  Face painting/body painting - Kids LOVE to get their face painted at fairs, why not do it at home!  Check out this Klutz Body Crayon Book and get creative drawing on bracelets and fake flip flops!

16.  Spa Day!  Do mani's and pedi's at home.

17.  Dance Party - Crank the music and DANCE! You can even buy a mini disco light to add to the fun!

18. Catch a frog/snake/crayfish or buy a fish to feed and observe - what a fantastic learning experience!

19.  Visit an indoor playground - indoor playgrounds are popping up everywhere and many of them are sensory friendly and parent friendly which means you can hop right in and enjoy the fun or help your Rett Girl navigate, play and slide.

20. Ride Bikes!  If your Rett girl doesn't have a bike yet look into it HERE.  Bikes offer lots of benefits and their just FUN! Here is a link to a Special Needs Bike Trailer by Wike and something called the i-GO!

Gluten-Free Cookout

A favorite summer activity is getting together with family and friends for a cookout, however, somewhere between the hot dogs and the pasta salad a gluten-free kiddo can feel kind of left out, and hungry!  Don't worry, we've got you covered with a few ideas!  Check out these great gluten-free recipes that are perfect to bring to a cookout so your Rett Girl has something great to eat (that everyone else will love, too).

Have a favorite recipe to share? Be sure to leave it in the comments section below!

Cobb Egg Salad - from kitchendaily.com

Ingredients

• 3 tablespoons nonfat plain yogurt
• 3 tablespoons low-fat mayonnaise
• 1/4 teaspoon garlic powder
• 1/4 teaspoon freshly ground pepper
• 1/8 teaspoon salt
• 8 hard-boiled eggs (see Tip)
• 1 ripe avocado, cubed
• 2 slices bacon, cooked and crumbled
• 1/4 cup crumbled blue cheese

Directions

1. Combine yogurt, mayonnaise, garlic powder, pepper and salt in a medium bowl.

2. Halve eggs and discard 4 of the yolks (or save for another use). Add whites and the remaining 4 yolks to the bowl and mash to desired consistency. Gently stir in avocado, bacon and blue cheese.

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Gluten Free Chick Pea Apple Slaw - from Joyous Health

Ingredients:

1 Granny Smith apple, peeled and grated
Juice of 1/2 a lemon, freshly squeezed
14 oz can of organic chickpeas or navy beans, drained and slightly mushed with a fork
1 carrot, peeled and grated
1/4 cup pumpkin seeds
1/2 cup dried cranberries
1 tsp red wine vinegar
1 tsp walnut oil
4 slices of your favourite gluten-free bread, toasted

Method: Squeeze the lemon juice onto the grated apple. Mix the apples, beans, cranberries, sunflower seeds and carrot together. In a separate dish, mix the red wine vinegar together with the walnut oil. Add the dressing to the apple mixture

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And for dessert, check these out:

Chocolate Chip Banana Squares - from Brunch at Saks

1 1/2 C. gluten-free flour (I use a mix of Bob's Red Mill white rice flour, tapioca flour, potato starch)
1/2 tsp. gluten free baking soda
1/2 tsp. baking powder (I like Rumford's because it's aluminum-free)
1/4 tsp. salt
2 ripe bananas, mashed
5 Tbs. coconut oil (or any vegetable oil)
3/4 C. cold water
1 tsp. vanilla

1/2 c. chocolate chips (Enjoy Life are gluten, dairy, soy, nut -free).
optional 1/2 C. of  walnuts 

Preheat oven to 350 F. Line a 9x9 square cake pan with parchment paper. Set aside. In a bowl, mix flour, baking soda, baking powder, and salt. In a separate bowl, mash bananas and stir in oil, water, and vanilla until well blended. Make a well in dry ingredients and pour in wet mixture. Stir until just blended. Add in chocolate chips and give it one last toss. Pour into prepared cake sheet.  Bake 40 min, or until toothpick comes out clean. 

If Not Just For a Little While....

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past 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.

We have laughed and cried at the words you all have been able to put down on paper. You are all amazing fathers, advocates, and fighters. You embody the love and hope and joy within your girls, and inspire others to do the same.

Thank you.

READ POSTS BY THESE GREAT DADS!
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  
Justin Johnson, Nora's dad: Just a Girl

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TODAY'S POST: Blog #8: Manny Gutierrez, Anna's dad

 

The other day, I was on a walk with my son, Gabriel, when I received a phone call from a colleague of mine. Suddenly, I noticed Gabe was almost half a block ahead of me. When he arrived to the street corner, he looked both ways and crossed the street. He is six years old, and we have never let him cross the street by himself. I ran up to him and asked, “Gabe, why are you walking ahead of me?” He looked up and said, “Because I want to look like an eighth grader, Dad.”

I remember when I was a kid and wanting to walk ahead of my parents by a few paces, as if I were walking by myself. However, that wasn’t until sixth grade at the earliest. Here was this little muppet of a man, my first grader, trying to walk tall in his tiny shoes.

I am not ready for this moment in parenting

“Gabe,” I begin to say, “I think you are a very smart and good young boy. I believe that if I told you to walk from our house to your class, by yourself, that you could. I believe that once you were done, you would know how to get home, by yourself. But I am walking with you, not just because I want to know that you are safe, but because I want to be with you. And when you grow up to be a big eighth grader, guess what? I’m still going to want to walk with you. And when you are in college, I am still going to want to walk with you. So Gabe, can you do me a favor?”

Looking contemplatively away from me, he asked, “Yes, Dad?”

“Can you just walk with me right now, just for a little while?’

He looked up at me, thought about it for a second, and said, “Sure.”

My daughter Anna is three years old. She has Rett Syndrome. Despite the obvious hardships that come with that severity of a diagnosis for her and for our family, I am truly honored to be my children’s father.

However, like most parents, I get busy with so many other things in life that seem so important in our day-to-day. I find myself growing more concerned about where our money is going each month then how my kid’s days went. I become more worried about different projects I am working on then trying to do something with my family. And yet, with my constant distractions of “responsibilities,” I turn to my daughter, pick her up, and she looks deeply into me, with nothing but thanks and happiness that I took the time to be
with her.

When I held her today, I was reflecting on my talk with Gabe, and how all of a sudden the roles were reversed. She looked at me as if to say, “Can you just be with me right now, if just for a little while?”

I knew from a young age I wanted to have children. I looked forward to the days that I could spend time with a family of my own. Being the good dad. The one who would teach my son to play ball, to jump into the day-to-day and be the good father I was always meant to be.

Then Rett Syndrome happened.

Suddenly you are not allowed to just mail it in for a day anymore. You can’t come home and just take the time to yourself to get ready for the next leg of it. You are either in or you are out in this Rett world that we live in.

It’s not enough to be good. You have to be great.

Because when your daughter looks up at you with those eyes, you have to be prepared to meet that gaze with integrity.

Knowing that you were there that day… To carry her when know one else could, because you are the one with the strongest shoulders. To fill-in the blanks, because as amazing as their mothers are, they don’t have the answers to everything. To catch them when they lay tired from their struggles, because everyone at some time reaches a breaking point. And then they will turn to you for comfort.

It maybe a lonely path at times, but it is the one thrust upon us by circumstance, by fate, by God… Whatever way, we were chosen. And to that I call us a brotherhood, bound by a virtue that all men and women search for and spend their lives trying to attain: unconditional love.

I never knew I could love so much.

For one Father’s Day, I would wish that I would not have to be so much to her, but allow her to just be so much to me.

And that some day, I can say to her, “Can you do me a favor? Can you just walk with me? If not just for a little while?”

-Manny Gutierrez

"Just a Girl"

 

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past 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.

READ POSTS BY THESE GREAT DADS!

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  

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Blog #7: Justin Johnson, Nora's Dad

My daughter has Rett Syndrome. There are many things she is, as a result of Rett Syndrome:

She is unable to say words like you and me.
She is unable to go exactly where she wants.
She is overwhelmed by too much noise, too much light or too many people.
She may always struggle with obstacles that keep her from living a life that our society might call “normal.”

When the world-at-large sees my daughter and people like them, they see the barriers. They see the disability. The handicap.

But I have seen my daughter be an over-comer. I watched her struggle to crawl, struggle to walk and struggle to eat. And I have watched her excel. My daughter loves ice cream, ponies, puppies, princesses and plenty of hugs. She likes to play with kids her age, gets scared and sometimes angry. She can be naughty. She needs to be cuddled, she needs to play and she loves to explore.

Sometimes, I get home from work and she is still napping. I crawl into her bed, give her a squeeze and kiss her cheek. She squints at me from the very, very corner of her eyes. And then she smiles and buries her face in the pillow, waiting for me to tickle her or hug her.

Whatever we face, we'll face together as long as it is within our power. Because we don't see barriers - only milestones. My daughter has Rett Syndrome. But she is just a girl.

-Justin Johnson

All Our Girls Are Special …

 

Father's Day is tomorrow! We asked Rett Dads to be our guest bloggers for this past 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.  

 

READ THESE PAST DADDY POSTS:

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."

Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"

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Blog #6: Roger Brooks, Juliana's dad

 

It’s hard to believe that just three years ago, we received the most devastating news of our lives, our beautiful Juliana was diagnosed with Rett Syndrome. In the three years since Juliana’s diagnosis, our family has learned a lot about Rett and we continue to learn more every day. We’ve often said the most frustrating thing about Rett is it is so darn inconsistent. Throughout all of this though, what I’ve learned, Rett or no Rett, all of our girls are special.

Kristy and I are fortunate to have been blessed with two beautiful girls- Juliana and Olivia. They fill our lives with laughter, fun, excitement, and of course tears and frustration at times. They light up my life and when we get to spend quality time together being silly, reading books, or just sitting watching a movie, I’m reminded of how special my girls are.

Living with Rett Syndrome by no means is an easy task. In fact, I’m not ashamed to say it’s brought me to my knees on several occasions. It’s difficult to watch Juliana struggle throughout her day to do the simplest of things.. In the same breath, I watch Olivia cope and deal with watching her big sister struggle and the patience she must display when things don’t quite go the way they should. They are both incredible little girls that are mature beyond their years. But if we look at all of our girls as special, Rett is just a wrinkle in the day, that’s all it is. Don’t get me wrong, some days; it’s a wrinkle that becomes a tidal wave, no doubt, but a wrinkle none the less. It’s all in how you look at it.

This father’s day, I’m just thankful; thankful for my special girls that fill my heart with so much love. I’m so proud of the beautiful young ladies they’re becoming. I’m proud that they have one of the best mom’s in the world, teaching them every day what it means to be strong, graceful, hardworking, and respectful, with or without disability. Proud that we’ve surrounded them with the same strong role models that love them more than they will ever know. I’m just darn proud and thankful of the life that we’ve been given; trying every day to appreciate all the ups and downs.

God has trusted me to care for these two wonderful little girls that I just know in my heart have purpose and meaning. I know they will do incredible things with their lives, and you know what, they already have in many, many ways. Kristy jokes often and has even blogged that Juliana and Olivia were “never more devoted sisters.” They are everything that a father would want their children to be; loving, compassionate, humble, graceful, and strong. They are my girls, my daughters, and they will always be special to me, Rett or no Rett.

-Roger Brooks