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 www.alongcamethebird.blogspot.com to follow the Bird's journey!

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 www.bamboobrace.com
Follow The Bamboo Brace on Facebook at www.facebook.com/TheBambooBrace (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 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.

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:

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.



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.



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

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 (www.streamingcolour.com)

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 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 www.cpdailyliving.com.

- 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!

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 www.lemonadelifestyle.com 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.