Friday Features 8.31.12

This week I...

- officially became a resident of the East Coast!! I'm slowly working on getting settled in and back into some sort of routine. Until I settle in, I'm happy spending my time being a tourist in a new part of the country!

Friday Features Links:

- Looking for therapy treatment ideas? Tonya at Therapy Fun Zone held a link-up for therapists to share their Pinterest boards. Click here to see the full list.

- Karen at Days of Our OT Lives is holding a weighted blanket giveaway! Interested in a chance to win?  Head over to her blog and leave a comment!

- The 2012 Paralympics are underway in London! Be sure to check out one of the competitors, OT Kerri Morgan, as she competes in the 100m and 200m dash.

- I am super excited about this last one! AOTA has announced a new member benefit: Access to two international OT journals: British Journal of Occupational Therapy and Canadian Journal of Occupational Therapy. This is in addition to access to American Journal of Occupational Therapy that AOTA members already have. Now there is really no reason to not be an AOTA member!


Happy three day weekend!!

August is SMA Awareness Month

I know the month of August is almost over, but there is still time to mention that August is SMA Awareness Month! You might be wondering, what is SMA? Also know as spinal muscular atrophy, SMA is a motor neuron disease, which affects the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. Since it is a motor neuron disease, SMA does not affect the cognitive abilities of the individual affected. Currently, there is no cure for SMA and prognosis varies greatly by type.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fast facts about SMA (courtesy of Families of SMA):

• It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected by SMA
• SMA is an autosomal recessive genetic disease, meaning both parents must be a carrier to pass the gene on to their child
• About 1 in 40 people are genetic carriers
• There are four types of SMA

For more information on SMA, please visit Families of SMA at www.fsma.org or www.facebook.com/familiesofsma

A Parent's Perspective - A Life Less Ordinary

Today I have Amy, from A Life Less Ordinary, sharing her perspective on raising a child with special needs. Amy is the mother of two adorable little girls, Vivian, age 3 and Elena, age 7. When Amy's daughter, Elena, was diagnosed with spastic diplegic cerebral palsy, Amy searched the web for information about what to expect, only to discover limited real-life stories. Amy decided to start a blog to share Elena's journey, with the hope of helping other families in a similar situation. Please read on for Amy's words of wisdom.

Our life in five words:

busy, challenging, gratifying, supportive, loving

Four qualities I look for in a therapist:

1. Goal-oriented (measurable progress)
2. Child and family centered (works with family life)
3. Patient
4. Animated/inventive (makes therapy less of a chore for my child)

Three resources I can't live without:

1. Our main PT - helped us cope/learn/celebrate life with CP more than I can put into words
2. OUR NANNY - Annette has been an integral part of E's development. She's been with us since E was a baby - through sign language, sickness, surgeries, therapies, everything!
3. Learning Tower - helps my kids stay at waist level in the kitchen/at the counter or table, and keeps them from falling

And one more - the internet! Connecting to others, whether it be the disabled community, family, etc, is priceless.

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

1. Topic: realistic lifestyle: Our main PT, especially in the beginning, asked us to change so much of our daily life in order to help Elena. It was daunting, but I'm glad she did it. Part of that process was accepting that E's development was atypical and we had to adjust. There did come a time when there simply was not enough time in the day to try to fit all/different/more exercises. Our PT knows this and understands "that there are only so many hours in a day - and part of the time Elena needs to just be having fun and being a kid."
2. Topic: reality checks: In the beginning, I had high hopes that our life would "normal out." Our main PT has helped us (immeasurably) understand that E will have challenges throughout her life related to her disability, as well as typical kid troubles. She was patient, kind, non-lecturing, approachable, even when we had disagreements regarding PT, stance, home exercises, etc.

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

I have two:

1. Enjoy your child. Most (clinical) diagnoses of cerebral palsy happen between 1-2 years of age. Around E's diagnosis, I was initially devastated while my husband kept me grounded. Besides having a name for her condition, nothing else had changed. She was still the same child we loved before the diagnosis. A diagnosis can HELP your child and your family, so having one can be a very good thing.

Developing fine motor skills with toothpicks

Back in February, Embrace Your Chaos posted 10 Fun Ways to Use Toothpicks. I loved the idea of placing toothpicks into the small holes of an old spice container, so I decided to try it out!

It turned out to be a great activity! What a simple way to work on fine motor and visual motor skills! Of course, always use close supervision with small items like toothpicks. Be sure to check out Embrace Your Chaos for more great ideas!

A Parent's Perspective - Life With My X-Men

Today I'd like to welcome Kristie of Life With My X-Men. Kristie and her husband, Eric, are the proud parents of two boys who have Fragile X Syndrome. Drew, age 12, and Blake, age 9, always keep them on their toes!

  

 

Our life in five words:

There's never a dull moment!

 

 

Five qualities I look for in a therapist:

1. Respect my knowledge about my kids. No, I don’t have a degree on Fragile X, but I’ve been doing this awhile, and I know my kids. I can tell you what will turn my child into a blob who just slithered to the floor to avoid doing something.
2. This is an obvious one, but I think it’s really important. The therapist has to like my child. The kids are so in tune with people’s emotions and personalities that they know when someone doesn’t like them. When Drew was a toddler, we had a therapist who didn’t like him. I knew it and so did he. He cried through every session and I cried on the way home. We only lasted about a month with her. 
3. Must be willing to learn about Fragile X Syndrome. I don’t mind if a therapist doesn’t know a lot about Fragile X. They just have to be willing to learn about it. Not a therapist, but our sons’ doctor really didn’t know much about Fragile X when Drew was diagnosed. But he was willing to learn about it and has turned out to be a great asset to our family.
4. Is ready to have fun! My kids aren’t going to want to go to therapy if it is boring repetition and work. If it is fun and the therapist is someone who actually plays with my child, my kids are going to look forward to therapy.
5. They have to be willing to share their expertise with others. If a therapist is willing to go into the school and share what works best for my child with his teachers and paraprofessionals, or come to an IEP meeting, I am going to be more inclined to sign on with them.

Three resources I can’t live without:

1. Fragile X Facebook page. It is loaded with parents new and old who have gone through or are going through the same things as us. Networking with other Fragile X parents is so important! 

Speaking of apps I love...

The Handwriting Without Tears app has finally been released!!! I've been waiting for this for years...only to find out the app is not compatible with the iPad 1. Maybe I'm old school (I prefer the term early adopter), but my iPad 1 is all I've got, and I can't download this app that I've been waiting for years to be released :(  I hope the folks at Handwriting Without Tears will do something to remedy this, as I know I'm not the only one who has an iPad 1 and can't afford to buy the latest iPad every year.

If you'd like to check it out, you can learn more about the app at www.wetdrytry.com.
Handwriting Without Tears: Wet-Dry-Try Capital Letters & Numbers is available for purchase from the app store for $4.99.

Has anyone gotten their hands on this app? Is it is great as it looks? I would love to hear all about it!

iPad Apps I Love

Are you interested in reading about the apps that I use in therapy? I've created a new page so you can read about my favorite apps all in one place! Just click on the tab iPad Apps at the top of my blog, or you can click here to access the page. Please check back as I will be updating this page as I discover more apps and find time to write about the ones I've already discovered.