Wednesday, August 8, 2012


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.

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!

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.  
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!  

Thursday, August 2, 2012

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!