Friday, September 28, 2012

Five Friday Features

See those quotes above? The one in the middle is me! Back in July (or maybe August), OT Practice Associate Editor, Andrew Waite, contacted me and asked if I'd be interested in being interviewed for an upcoming article. I said yes, and I managed to get a line in the article! Burnout is a serious problem in helping professions, such as OT. Whether you're feeling burned out or not, I recommend you take a look at the article in the most recent issue of OT Practice.

And now, here are some other articles and blog posts worth reading, if you find yourself with some extra time this weekend.

  1. I haven't tried the new Handwriting Without Tears Wet-Dry-Try app, but there has been a lot of buzz about it on the web. Carol Leynse Harpold, of OT's With Apps, shares her thoughts on the app here. I love that she focused on how to incorporate real manipulative tools into the use of the app, since that is the heart of the Handwriting Without Tears curriculum. She also made a good point about the use of a stylus and that all styluses are not created equal - to promote a tripod grasp, make sure the stylus you're using has connectivity using the edge of the stylus, when held at an angle. Check out her post for photos if my description doesn't make sense :)
  2. I'm a little late on this one, but be sure to read this article from The Atlantic, "iPods as the Next-Generation Autism Aid". It features the research of an occupational therapist using iPods with young adults with autism. Yay for OTs getting out there and being heard!
  3. I came across a few good articles on parent and children's rights. The first one was the story of Maya when she and her family moved to a new state and the process of transferring her son's services across states. Read her story on Love That Max. Special-Ism ran a great article called IEP's and Evidence! Written by a lawyer, this article explains in easy to understand terms why it is a good idea for parents to collect evidence and how to do it. By collecting evidence this will help parents support their case if there is ever any wrongdoing. I'm hoping by parents becoming more savvy, there won't be so many cases of children not being given the education or services they are entitled to.
  4. Dr. Zachry of Pediatric Occupational Therapy Tips shared an easy way to teach children to cut on the lines using a simple DIY tactile cue. You can see what she did by clicking here.
  5. Okay, this one doesn't require much reading. If you haven't seen this short film, One, I highly recommend you check it out. This is a touching film by a woman whose brother has cerebral palsy. It's only ten minutes and well worth your time!
The leaves on the trees are just starting to show glimpses of changing colors. I am so excited to experience a New England fall this year! Have a fantastic weekend!

Thursday, September 27, 2012

Tips for Teaching Lefties to Write

French homework
Image credit: eefeewahfah

I often receive questions from readers and a while back I received an email from a parent asking for tips for teaching her left handed son to write. This is a common question I receive from both parents and teachers, so today I'm sharing my tips for teaching lefties to write.

Tips for Teaching Lefties to Write:

  • Be a good model. Even if you're right handed, try to use your left hand when modeling correct letter formation and pencil grasp for the left handed child. 
  • Teach left to right progression. While you want to encourage your leftie to use correct letter formation and to complete pre-writing tasks (like tracing and connecting dots) from left to right, it is ok for lefties to do things that seem 'backwards' to right handed writers, like crossing the letter t from right to left.
  • Slant paper appropriately. Teach the child to appropriately slant the paper. A leftie should slant their paper with the top left corner higher than the right top corner.
  • Discourage the use of a hooked grasp. Many lefties tend to hook their wrist when writing. Use of a slanted surface, such as a slant board, can help better position the wrist. Also, practice writing on a paper taped to a vertical surface, like the wall or refrigerator door, to help improve the position of the wrist.
  • Encourage the use of a tripod grasp. Use a short crayon or pencil to encourage your leftie to use a tripod grasp (thumb and first two fingers).
  • Be aware of placement of written material to by copied. Write the letter or word to be copied on the right side of the paper or on the top of the paper. A common problem that lefties encounter is that they can't see what they're supposed to be copying! Since we right from left to right, their hand covers up what is on the left side of the paper. By placing information to be copied on the right side or the top of the paper, the child can better see what needs to be copied. Handwriting Without Tears does a fantastic job of designing their workbooks so both lefties and righties can see what needs to be copied.

Also, make modifications as necessary.

  • Modify worksheets. If you are making your own worksheets (e.g. a spelling word worksheet), place word columns on both the right and left side, so both righties and lefties can see the list of spelling words.
  • Modify workbooks. If making your own workbooks, put the binding at the top, so the left handed writers don't have the bump the binding causes in their way.
  • Modify notebooks. Allow lefties to use notebooks backwards so the binding doesn't get in their way.
  • Modify seating. Have lefties sit on the left side so they don't bump elbows with other students when writing.

For more information on teaching lefties to write, please visit:

Left Handers' Day and the teaching resources page of Anything Left Handed.

Do you have a question? If so, email me at and I'll do my best to get back to you with an answer!

Monday, September 24, 2012

Ready to Print App

Ready to Print is a pre-writing app that was developed by an occupational therapist with more than 20 years of experience working with children. This app progresses through pre-writing skills in a specific order so that children can master the skills necessary for writing.

Here's a quick breakdown of each skill addressed in this app:
Touch: This activity focuses on basic index finger isolation and visual scanning skills. It contains 16 different levels, with different pictures and varying number of pictures. The size of the items may be changed to match the child's skill level. As seen below, when the child touches the picture, it turns into something else!
Ordered Touch: Like the Touch activity, Ordered Touch focuses on index finger isolation and visual scanning. By prompting the child to touch the items in a specific order, it also addresses visual tracking skills. This activity introduces the directionality of writing strokes (left to right, top to bottom, starting at the top) by the order in which the items are to be touched. As you can see below, the eggs turned into fried eggs when each egg was touched, with the sequence starting at the top, just as a letter would start at the top.
Matching: This activity works on visual scanning, visual tracking and visual motor skills by having the child match the shape to the outline of the shape beneath it. Recognition of basic shapes is also important for pre-writing, pre-drawing, and pre-math skills. The Matching activity can be set up to have between 2 and 6 shapes shown on the top, depending on the skill level of the child.
Path Following: This activity focuses on visual tracking, visual motor and fine motor skills. The child draws a line inside the path from one picture to another. The paths progress in complexity and develops strokes to be used in writing letters. The width of the path can be changed to match the child's skill level.

Shape Tracing: This activity also focuses on visual tracking, visual motor and fine motor skills. As with the Path Tracing, the shapes progress in complexity. The direction that the child is prompted to trace the shape teaches correct stroke patterns for writing letters. The width of the path can be changed to match the child's skill level.

Connect the Dots: This activity focuses on visual tracking, visual motor and fine motor skills. In this activity the child draws a shape by connecting dots. Again, the shapes progress in complexity and directionality is taught to promote correct stroke patterns when writing letters. The child is then given the opportunity to copy the shape on the right side of the screen.

Pinching: This activity focuses on fine motor skills, specifically developing a pincer grasp, which is important for developing a correct grasp on a writing utensil. In the activity, the child uses two fingers to bring two items together. In the example below, the child would pinch the bird into the cage.
Letters: All of these pre-writing activities lead up to tracing letters! The latest update of this app now includes lowercase letters as well as uppercase letters. The child will now incorporate all of the skills learned to begin to learn correct letter formation of capital and lowercase letters.
 As in the Dot to Dot activity, the child has the opportunity to copy each letter on the right side of the screen.

Free Draw: This is a blank canvas for drawing with a finger or stylus. The child can use this to practice the pre-writing skills he has learned or just draw a fun picture!

Read more after the jump to find out how I use Ready to Print in therapy and what I like the most about this app!

Friday, September 21, 2012

Five Friday Features

  1. I've been busy adding to my Amazon store in preparation for the holidays. I know it's only September, but the holidays will be here before we know it and I'm always asked for recommendations for gifts for children. Anytime you click through to Amazon from my blog and then make a purchase while you're there, I receive a very small commission, which I am dedicated to using to help others. So far I have used the money I have received to support Shasta's Kickstarter Campaign and to participate in the virtual Bravery Run. Like I said, I receive only a very small commission, but every little bit does help.
  2. This week I discovered the blog, Your Kid's Table. Written by an OT and mother to two kids under three, Alisha Grogan. In Your Kid's Table, Alisha shares the strategies she uses both at home and at work, to help parents improve their children's eating and feeding skills. This is a great resource!
  3. I also discovered Beyond Basic Play, a blog written by a pediatric physical therapist, Natalie. Beyond Basic Play is where Natalie shares news, tips, and resources relevant to pediatric physical therapy, including her Tips and Tricks Tuesday. Be sure to check it out!
  4. Julian Treasure gave a thought provoking TED Talk called Why Architects Need to Use Their Ears. In this talk he discusses how the noise level of buildings, offices, classrooms, hospitals and even cities, are affecting our health and well-being. He is especially committed to changing the way classrooms are designed to make better learning environments. This talk made me think of the students I work with, many of which are sensitive to noises and may have auditory processing delays. Wouldn't it be great if classrooms were universally designed to make it easier for everyone to hear and learn? Read more about his tips for designing classrooms that are kind on the ears on the Ted Blog.
  5. The FDA has updated their warning on the use of Simply Thick with infants. The previous warning related only to infants born before 37 weeks gestation, and now the FDA is recommending no use of Simply Thick with any infants, due to a possible increase in necrotizing enterocolitis (NEC). Please visit the FDA website for more information.

Happy first weekend of autumn!

Wednesday, September 19, 2012

A Parent's Perspective - Along Came the Bird

Help me give a warm welcome to Lana, from Along Came the Bird. Lana is one busy mama! She is the mother of two teenagers (the oldest just left home for college and the younger is learning to drive!), as well as almost 5 year old Lily (aka The Bird), who has autism. Thank you Lana for stopping by and sharing your insights! And let's all give Lily an early "Happy Birthday!" The big day is on Friday!


Our life in five words:

Joyful, challenging, compassionate, blessed, exhausting.

Four qualities I look for in a therapist:

  • A balance of firmness and gentleness. At the very beginning of the relationship, Lily needs someone who establishes clear boundaries and then calmly enforces those boundaries. 
  • Innovative. Lily is completely and totally in love with all things electronic and is amazingly adept at operating them. A therapist who is up to date on the latest technology, especially AAC devices and apps, and is comfortable utilizing those to help Lily communicate is very important. 
  • Enthusiastic. I want a therapist who is excited about her job, excited about working with kids (especially mine!) and who comes to work with a sense of anticipation that this could be the day that something truly amazing happens. 
  • Team player. I want a therapist who is willing to communicate with me and my husband, other therapists, teachers and school personnel...anyone who is working with Lily. Bouncing ideas off each other and working together as a team keeps all of us on the same page and will help us accomplish our goals more effectively.

Three resources I can't without:

  1. Pinterest - I get tons of ideas here for therapy, products, play, food, games...and on and on it goes.
  2. iPad - It's the one sure fire thing that makes Lily happy every time!
  3. The Safety Sleeper Bed and Little Keeper Sleeper PJ's. Keeps Lily safe, secure, and clothed (!) at night so that we all get good rest.

Two words (or more!) of advice for therapists working with children with autism: 

Get to know the child beyond his diagnosis. Make an effort to ask about his or her life outside of therapy. I think of our therapists as family members - I know their kids, their husbands, what's going on in their lives. I want them to think of us as more than "clients". I want them to take ownership in my child's progress. Also, there is no such thing as too much communication!

A word of advice for the parents of a child newly diagnosed with autism:

Take at least 10 minutes every day and just look at your child. No therapy, no checklists, nothing. Just observe. Give yourself time to see him or her as just a kid and not a project. Allow yourself time to fall in love with your child each and every day. Then snuggle her up!

One dream for my child:

To talk!!! With her own words coming out of her own mouth!!! 

What I do to rest and recharge:

I read. But absolutely nothing that engages my brain in any kind of learning. Fiction. Mystery and suspense. A serial killer, a dead body or two, and someone trying to solve the crime. That's my cup of tea. And a good nap never hurts!

Thank you, Lana for stopping by. And thank you for reminding me to go to work with "a sense of anticipation that this could be the day that something truly amazing happens." Those are words for a therapist to live by. Readers, please visit Lana's blog, Along Came the Bird, at to follow the Bird's journey!

Monday, September 17, 2012

Bamboo Brace

Have you heard of the Bamboo Brace? I hadn't either until I was contacted by Michael Workman, PT, C/NDT, creator of the Bamboo Brace. In his work as a pediatric physical therapist, Michael saw a need for a dynamic elbow splint for children with hemiplegia, so he designed one himself!

What is the Bamboo Brace?

The Bamboo Brace is a flexible pediatric arm brace that is placed around the elbow joint for children with cerebral palsy and other developmental challenges. The Bamboo Brace assists children in maintaining a more extended position at the elbow, so both gross and fine motor skills are easier to perform. The Bamboo Brace is made out of neoprene and has five flexible and interchangeable stays, as seen below. These flexible stays make this a dynamic splint rather than a static splint, which allows gross motor movement while still allowing fine motor play.

How is it used?

The Bamboo Brace is recommended for use with children with an elbow flexion pattern that is slowing development, children who are unable to bear weight through their arms or support themselves for crawling, and children who present with spontaneous hand movements and hand mouthing.

As recommended by Michael Workman, I started out using the #3 insert when working with children and then adjusted from there as needed (the higher the number, the more rigid the plastic). The flexible insert easily slides into the brace (as seen below). The insert does tuck into the fabric completely - I just left it partially out in the photo to demonstrate how it is inserted. The inside of the brace has three non-slip dots to help hold the brace in place against the child's arm. The brace simply Velcros around the child's arm and you're ready to go!

I used The Bamboo Brace bilaterally to assist with weight bearing in infants and I found the brace to be very helpful when using it in this way. It allowed the child to develop more shoulder strength while being supported at the elbow. It was also easier for me as the therapist to position the child, because sometimes I feel like I need eight hands! The Bamboo Brace was also less bulky than other similar splints on the market.

I also used The Bamboo Brace with a child with hemiplegia, as seen below. The brace positioned the child's arm in an extended pattern, which allowed for weightbearing through the more affected arm. Typically this child was resistant to bearing weight through that arm and would only use the affected arm for functional activities if strongly encouraged to do so. I found the brace to be effective for both bilateral and unilateral activities, depending on the needs of the child.

For the most part, I found that children were willing to wear The Bamboo Brace and did not appear to be uncomfortable when wearing it. I have not yet used it for children who frequently mouth their hands or engage in self-injurious behaviors (e.g. hitting self), but it seems that it could be useful in those situations as well.

Product Details:

The Bamboo Brace
Available in three sizes: Infant/Toddler (under 18 months), Preschool (18 months to 4 years, Early Grade School (5 years to 9 years)
Price: $60 for Infant/Toddler and Preschool; $69 for Early Grade School; Discounted price when purchasing two braces at the same time. Click here for purchasing information

For more information:

Visit Professional Therapies at
Follow The Bamboo Brace on Facebook at (When The Bamboo Brace reaches 2,012 fans, Professional Therapies will donate $5,000 worth of Bamboo Braces to therapy clinics across the country. Go give them a thumbs up and let's make this happen!)
To purchase The Bamboo Brace, click here or you can purchase it on Amazon

Disclosure: I received demos of the Bamboo Brace free of charge. However, all opinions expressed are entirely my own.

Has anyone else used The Bamboo Brace? I would love to hear about your experience!

Friday, September 14, 2012

Friday Features 9.14.12


This week I...

- received some demo shoelaces in the mail from Tying is a Snap. I haven't had a chance to try out the laces yet, but so far I like what I see! I'm always recommending that parents use two different colored laces when teaching their kids to tie shoes. These laces look like a great solution without making a mess of your shoelaces by trying to tie two different colors together! Look for a full review and giveaway once I have a chance to try them out!

Friday Features Link:

- There were many poignant stories on the web this week about remembering the victims of the 9/11 attacks. I especially enjoyed Ellen's inspirational post, A plate of cookies to remember 9/11. This touching story features a man with cerebral palsy and lesson for her children.

- I came across a fantastic website/blog called Special-Ism. I'm still wading my way through all of the great information provided on this site dedicated to "invisible" special needs, but I highly recommend you go check it out. I was especially impressed with the article, Showering as a Sensory Tool written by an OT. This article encourages us to rethink the sensory aspects of our children's daily routines.

Thursday, September 13, 2012

Tips for choosing an iPad stylus

When it comes to choosing an iPad stylus, it often comes down to trial and error to figure out what works best for you and for the child you're working with. I find reading reviews on blogs (such as OTs with Apps) and Amazon user reviews to be helpful.

Here are some things to keep in mind when choosing a stylus or reading user reviews:

  • How much pressure is required to activate the screen? Is this amount of pressure compatible with the skills of the child you're purchasing a stylus for?
  • How heavy is the stylus? While most tend to be very light, I'm on the lookout for a heavier one, which might help some children hold the stylus and apply enough pressure to activate the screen.
  • How long is the stylus? I've noticed there are many short styluses on the market, which might be better for smaller hands.

Here's what I currently use:

3 pcs Aqua Blue/Black/Red Capacitive Stylus/styli Touch Screen Cellphone Tablet Pen for iPhone 4 4s 3 3Gs iPod Touch iPad 2 Motorola Xoom, Samsung Galaxy, BlackBerry Playbook AMM0101US, Barnes and Noble Nook Color, Droid Bionic

I keep a pack of these on hand to trial with kids during therapy. The price for these seem to fluctuate a bit on Amazon, but they are usually less than $3 for a three pack. This stylus is easy to carry around in my clipboard, and since they're so cheap, it's not a big deal if I lose one or if a child breaks one (although they seem sturdy and I have not yet had one break).

Here are a couple that I haven't tried yet, but I'm interested in checking out.

Mini Stylus: These look great for little hands. Just as short crayons help promote a tripod grasp, I'm sure a short stylus will help promote a tripod grasp as well.

10 in 1 Bundle Mini Capacitive Stylus / Styli Pen - Blue Purple Red Green Gold White Black Pink Silver Chrome - for Compatible Models

Pencil-like stylus: I like how this one looks like a pencil. This could be fun for kids to help them transition from using the stylus on the iPad to using a real pencil on paper.

HHI Chunky Pencil-Like Capacitive Stylus Pen - Aluminum Gold (For Kindle Fire, iPad, iPad 2, Motorola Xoom, BlackBerry Playbook, HTC Flyer, Samsung Galaxy Tab, iPhone 4, iPod Touch and All Touch Screen Tablets)

Have you tried any of these? If so, what did you think? What's your favorite iPad stylus to use in therapy?

Monday, September 10, 2012

Baby's Musical Hands

While I don't agree with using apps purely to distract or to keep a baby busy, I do think some apps have therapeutic value for babies. Baby's Musical Hands by Streaming Colour is one of those apps! This simple cause and effect app contains 15 brightly colored squares that provide audio and visual feedback when touched. The red squares make drum sounds, the yellow squares play piano notes, and the blue squares play guitar notes.
Screen prior to activation.

Bubbles appear after screen is activated.

How I use Baby's Musical Hands in therapy:

Since this is a basic cause and effect app, I frequently use Baby's Musical Hands to encourage reaching, especially in infants/toddlers with hemiplegia. Since most babies love music, this app can be a motivator for babies with hemiplegia to reach with their more affected arm.
Toddler reaching with affected hand.

I've also used this app as a motivator for weightbearing. I simply lay the iPad flat on the floor and then have the infant place his or her hands on the iPad screen while maintaining a crawling position. The baby can look at the screen and the screen continues to activate (making music and lighting up) while the baby is weightbearing through his arms.

Other possible therapy uses:

  • Encourage visual tracking in infants with visual impairment
  • Encourage head turning in infants with torticollis

What I like about this app:

  • Activates easily, doesn't require precise fine motor movements
  • Engaging and motivating to babies
  • Can turn down the volume to allow for visual feedback only

Room for improvement:

This is a basic app that does what it sets out to do. I think it is great just the way it is and I don't see any reason to change the app!

Best for ages:

  • Infants and toddlers

Bottom Line:

Would I recommend this app? Absolutely! For the price, this app is well worth it. In my experience, babies and toddlers are drawn to its music and bright lights, making this an engaging and motivating app.

Baby's Musical Hands App Information:

Name of app: Baby's Musical Hands
Publisher: Streaming Colour (
Compatible with: iPhone, iPod Touch, iPad, Android. Requires iOS 4.1 or later. Android 2.3 and up.
Price: $0.99 available in the iTunes App Store or Google Play Store for Android devices.

Do you use Baby's Musical Hands? What therapeutic uses have you discovered for this app?

Friday, September 7, 2012

Friday Features 9.7.12

This week I...

- did a lot of mundane, yet time consuming tasks related to moving, like registering my car, getting a new driver's license, and getting my internet set up (yay for the last one!)

- am learning to adjust to my stove. Before I moved, I had a gas stove. Now I have an electric stove and when I make my morning oatmeal, it just doesn't come out the same. It's all slimy. Yuck! Obviously I have texture issues. In fact, about a year ago, I would gag on oatmeal, but that's an entire post in itself. Long story short, I'm learning to adjust to my new stove and my slimy oatmeal, and it makes me more sensitive to what the kiddos I treat in feeding therapy are experiencing.

Friday Features Links:

- Alisa, who was featured in this week's Parent's Perspective, recommended that I check out the website CP Daily Living. What a great suggestion! CP Daily Living is a website created by the mother of a child with cerebral palsy and is full of useful information and resources about cerebral palsy. Be sure to visit at

- If you are a regular reader of my blog, then you know that I love to hear from parents and hear a parent's perspective on what makes therapy successful for their child. This week Hopeful Parents had a great post called 10 tips on having a good home therapy program. This is a must-read for both parents and therapists.

- Tonya, of Therapy Fun Zone, had an idea that is pure genius! She used two iPad styluses to create iPad chopsticks. I will definitely be trying this with apps like Dexteria or Ready to Print that have tasks that require pinching. What a creative way to work on fine motor skills on an iPad!

Wednesday, September 5, 2012

A Parent's Perspective - Lemonade Lifestyle

Today I am pleased to welcome Alisa of Lemonade Lifestyle. Alisa's daughter Madelyn, or Maddy, as she lovingly calls her, now age 3, was diagnosed with an extremely rare chromosomal disorder, 2q23.1 Microdeletion Syndrome at 8 months of age. Alisa was kind enough to stop by and share some of her favorite resources, as well as thoughtful words of advice for both parents and therapists.

Our life in five words:

Unique, Blessed, Hectic, Evolving, Hopeful

Four qualities I look for in a therapist:

I want a therapist that is HONEST. I do not want a Therapist to give me the answer he/she thinks I want to hear. I want to hear facts and figures. I want to hear proven results. I want to hear worst case scenarios, and then I want them to throw all of it out the door and BELIEVE THAT ANYTHING IS POSSIBLE when it comes to my child. Madelyn is as unique as her chromosomes and I search for a therapist that has THE ABILITY TO THINK OUTSIDE OF THE BOX. A cookie cutter, one size fits all approach will not work with Maddy. We have been lucky to work with several different therapists over the last 3 years, and all of them have been on board with what we envision for Madelyn. We WORK TOGETHER AS A TEAM to make sure that what the therapist is working on during a session at school is being reinforced at home. We communicate often about concern AND praises. Some of Madelyn’s best therapists are not only part of her Team, but part of our Family. Early Intervention is so important, that you cannot waste any time on a Therapist that does not have your child’s best interests in mind.

Three resources I can’t live without:

Otto Bock Kimba Special Needs Stroller with Tray. This stroller has made shopping trips, family outings, and dining out at restaurants a lot less stressful.

2q23.1 Microdeletion Syndrome Support Group and Mommies of Miracles: When I have a simple question like “where do I find a good quality teether for my oral sensitive 3 year old?” Or a bigger question like “how do I find a good Personal Care Assistant?” 2q23.1 Microdeletion Syndrome Support Group and Mommies of Miracles both give great advice. Social media is more than marketing and bragging about what delicious new recipe you tried. I have an entire group of Special Needs Mommy-Friends who I may never meet in person, but they have become some of my closest friends online.

Tiny Love Musical Nature Stroll Toy Bar has bought me 15 more minutes in a store and allowed me to eat my entire meal at a restaurant more than once! Another Special Needs Mom gave this to Maddy for her 2nd birthday and we LOVE it! The clamps will open wide enough to fit securely on the armrest of Maddy’s stroller and will stay in place while she is playing with the attached toys. We’ve also used this on long trips and attached it to her car seat.

Two words (or more!) of advice for therapists working with children:

Please take the time and get to know the child you are working with outside of their abilities and disabilities. Maddy loves music and more than one of her therapists over the years has worked music into her therapy session in order to get more positive results from her. Therapy can feel routine and boring for a child after several sessions, keeping it fun and incorporating play with therapy has been very helpful with my child.

A word of advice for the parents of a child newly diagnosed with 2q23.1 Microdeletion:

DO NOT LET EVERYTHING YOU READ ONLINE SCARE YOU! When Maddy was diagnosed, I desperately searched the internet looking for an article, blog, website, support group, etc that would give me the hope that I desperately wanted. I wanted to know that everything was going to be OK, even though we were just given the worst case scenario by her doctor. Three years ago, that information did not exist, but hopefully now someone can stumble across Lemonade Lifestyle and see that Maddy lives WITH 2q23.1 Microdeletion Syndrome and her diagnosis does not define or limit her way of life.

One dream for my child:

I dream of the day that Maddy will be able to communicate with her family and friends, either with traditional speech or using assistive technology.

What I do to rest and recharge:

Every year, three of my closest friends and I get away for a weekend of shopping, dining at fancy restaurants, and dancing the night away. We also try to get together once a month with or without our kids to catch up. We can talk to each other about anything and everything…I never feel left out or envious of their lives because we all have our own personal struggles. When we get together, we just have fun and the serious parts of our lives seem a little easier to handle.

Thanks so much for stopping by, Alisa! Readers, please be sure to visit to follow Alisa's journey in raising a child with an extremely rare disorder. Alisa's post in honor of Rare Disease Day 2012 is a great place to start and to learn more about Maddy.

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