A Parent's Perspective - Adventures in Mattyland

Today, please help me welcome Brandi, of Adventures in Mattyland. Brandi is mom to adorable, 2 year old Matthew, who has epilepsy, cerebral palsy (CP), cortical visual impairment (CVI), bilateral hearing impairment, microcephaly, and undiagnosed chromosomal abnormalities. One of Brandi's goals for 2013 is to create a blog that is an asset to other families. Brandi is well on her way to achieving that and today she is stopping by to share some of her insights gained from being a special needs mommy. Read on to learn more. 

Our life in five words:

Busy, Challenging, Blessed, Loving, Committed

Four qualities I look for in a therapist:

1. The ability to establish a good relationship with my child. A good therapist should be able to set up a relationship with a child to let them know what is expected of  them, but also make them want to come to therapy. Establish guidelines with the parents how meltdowns will be handled and communicate how therapies can also be carried out at home so there is continuity. 
2. Creativity. Be willing to step outside the norm to find what best fits the patient. After much trial and error, Matthew's therapists and I set up a plan to have him do his sessions in a darkened room with a standing bubble lamp to calm him. We have also done a lot of different therapy activities on swings and exercise balls because they help him focus better.
3. Show Discretion. If you have something negative to say about the kid, please don't say it in front of your clients. Nothing will kill a working relationship with a parent quicker than unprofessional comments about their child, even more so if you make them in front of other parents.
4. Willingness to Try New Things. We have tried a few different ACC apps on Matthew's iPad and none were a good fit for him. I found one on my own that I found that I could customize with a dark background which helped Matthew see the speech tiles better. Thankfully we have a great Speech Therapist and Occupational Therapist who co-treat and who listen to our concerns and are willing to take a chance on trying something new and different to capture Matthew's attention.

Three resources I can’t live without:

• Blogs and Support Groups. Joining the blogging community has been a lifesaver for me, both as a writer and a mother of a child with special needs. In the beginning of our journey, I had never felt so alone and isolated because we knew no one else in our situation. I was lucky to find a whole community of parents both on Facebook and through blogging who "get it." Some of my favorite blogs are Love That Max, Along Came the Bird, Bird on the Street, Team Aidan, Modified Mamas, and Mommies of Miracles.
• The iPad. The iPad was a huge game changer for Matthew in terms of therapies and communication. He has shown very little interest in conventional toys, unless it's a Hotwheel car or Mater from the Cars movies, but he gets very excited when he sees his iPad. We began using it in therapy in December 2011 and it was like a light switch flipped for him. We have a great list of apps we use with him and change frequently to help with communication, OT skills, and vision strengthening apps. It has also been a lifesaver during long appointment waits and during meltdowns because then I can play his Beatles playlist or play one of his Disney videos.
• Cozi Calendar app for iPad. This app is fantastic! My husband also has this app on his work iPad and it has saved us from a lot of scheduling problems. You can sync the calendar between multiple devices and the computer so that all of your appointments are easily accessible for everyone in the family and you can even color-code appointments for each individual family member. Cannot tell you how much we love this app! 

Two words (or more!) of advice for therapists working with children with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

• Be flexible. What might work for a kid one week might not work the next week. Be willing to try new activities or adapting existing ones.
• Involve parents as much as possible and try to give them as input as possible. No one knows best what works for a kid than their parents and ultimately they are the ones who have to put therapies into action at home. 

A word of advice for the parents of a child newly diagnosed with Cerebral Palsy, Epilepsy, CVI and Hearing Impairment:

When your child is diagnosed, it is perfectly normal to be in denial and to mourn your idea of "normal." Your life is about to change in ways that you won't be able to comprehend. The most important thing is to build your family a village of friends, family, trusted therapists and specialists. One of the best decisions I've made since Matthew started collecting diagnoses was to open myself up and start seeking out other families who are going through similar circumstances that we are. If you're reading this and don't have people to talk to, email me and I will help you get started. 

One dream for my child:

My biggest dream is that Matthew be able to communicate with us. One of the worst feelings as a parent is seeing your child's frustration when they cannot communicate with you.

What I do to rest and recharge:

One night a week, my husband takes Matthew over to his parents’ house to hang out and gives me a night off. I use that time to read, blog, watch movies, shower and sometimes sleep. I get time off and my in-laws' get time with Matthew so it is a win-win.

Thanks so much for stopping by, Brandi! Readers, be sure to follow Matthew's adventures at www.adventuresinmattyland.blogspot.com. You can also follow along on Facebook, Twitter, and Pinterest.

TED Talk Tuesday: "Your body language shapes who you are"

Remember when I chose to watch more TED Talks? Well, I am actually doing it and I'm bringing you all along for the ride. On Tuesdays, I will choose some of my favorites to share with you, along with some food for thought while you're watching the video.

Today I'm sharing Amy Cuddy's talk, "Your body language shapes who you are." This is a 20 minute talk, so if you don't have time to watch it right now, I highly recommend bookmarking it for later. I promise, you will not be disappointed.

Here are a few things to think about as you watch this talk:

• What does your body language tell your students/children? Are you telling them, "I'm in power" with your body language? Is that what you want to be telling them?
• How could you use this information to help your students (or children) who feel that they are not in power (as many children with special needs do feel)?
• How could you use this information when teaching social skills to students, especially teenagers?

"Don't fake it till you make it. Fake it till you become it." - Amy Cuddy

Schoodles Pediatric Fine Motor Assessment

Schoodles Pediatric Fine Motor Assessment (PMFA), Third Edition is a performance-based assessment tool for evaluating a child's fine motor skills.

I've been using Schoodles for a few months now and I love it! It is neatly organized into a useful binder and is easy to administer. I love that it allows me to have everything in one place. When I need to assess a student I can easily grab my Schoodles binder and I am ready to go!

Who should use this tool?

School and clinic based pediatric occupational therapists.

What does Schoodles assess?

Schoodles is a performance based assessment tool to evaluate a child's fine motor skills. It is not a standardized assessment. With that said, I have found it to be a very useful tool to guide my clinical observation of childrens' fine motor skills.

Schoodles is used to assess the following skill areas: grasp, hand dominance, design imitation and design copying, tracing draw a person, handwriting, coloring, cutting, and picture assembly.

In addition, the following supporting skills are assessed: visual tracking; hand and arm strength, endurance, coordination, and tone; right/left discrimination; graphesthesia; body awareness; eye-hand coordination; kinesthetic awareness; crossing midline; and balance and coordination.

For what ages is Schoodles appropriate?

Schoodles is designed for children ages 3 years and older. In my opinion, it is most appropriate for children between 3 and 8 years of age, or those that are developmentally functioning within that age level. I used to work in a middle school setting where I frequently used only clinical observation when writing reports, because standardized assessments just didn't provide an accurate depiction of the students' abilities. I wish I had had Schoodles back then to organize my thoughts and observations!

How is it administered?

It's very simple to use. Schoodles can be used in part, or in full, and can be completed in any order. The reproducible 'Student Worbook' worksheets make it easy to assess basic skills, such as cutting, coloring and tracing, as well as handwriting. The 'Therapist Guide' contains suggestions on how to observe each skill area and supporting skill area, either within the classroom setting or during an assessment situation.

What does the Schoodles assessment tool include?

Schoodles comes neatly organized into a binder with two sections. The first section is the 'Therapist Guide' which explains how to use the assessment tool, provides directions for assessing each area, and contains age ranges for expected skill development. The 'Therapist Guide' also contains an Assessment Table which provides skill observations guidelines. Finally, the 'Therapist Guide' contains a Therapist Observation Sheet, which allows for easy recording of skills during the assessment.

The second section of the assessment binder is the 'Student Workbook' which contains reproducible pages for tracing, drawing basic shapes, drawing a person, handwriting, coloring, cutting, and picture assembly.

The Schoodles binder also contains an empty zippered pouch to hold the items needed for testing. This is all I had to add to my kit to make it fully usable!

pencil, pen, scissors, a few crayons, and a couple of tissues

What about the paperwork? Is it easy to write up a report?

If you're an OT then you've probably been writing up reports of your clinical observations since you were a student. Yes, using Schoodles does require actually writing out all of your observations. There is no shortcut around that. I do find that using Schoodles helps me complete my observations in a more systematic way than I usually do, which in turn makes writing up the results easier. For a sample report, visit the Schoodles website.

Where can I purchase Schoodles Pediatric Fine Motor Assessment?

The Schoodles Pediatric Fine Motor Assessment can be purchased on the Schoodles website (www.schoodles.com). Schoodles PFMA is available in binder form for $65 or as a CD for $55. The student workbook is reproducible, so you will not be required to purchase expensive testing booklets every few months :)

For more information, be sure to check out the Schoodles website, including this great list of FAQs.

*I received a complimentary copy of the Schoodles Pediatric Fine Motor Assessment, Third Edition for my clinical use. However, all writing and opinions are entirely my own.

January, currently...

+ celebrating the completion of another round of progress notes!!!

+ researching the best way to collect data (to make the aforementioned progress notes a little less painful). Any ideas?

+ seeking sample transition goals. I'm working with a much older student population than I was in the past and would love resources on writing transition goals.

+ seriously hoping to win this giveaway (but I'm sharing it with all of you anyway :-))

+ enjoying all of the fun toys featured on this new blog by a pediatric OT that I discovered via Therapy Fun Zone's activity link up.

+ saddened by the death of Aaron Swartz. When are we going to talk openly about depression? We cannot lose another great mind to depression.

Book List

I LOVE to read. I always have a never ending wish list of books to read, so I thought I'd share a few from my list that caught my eye, not just as a book lover, but as an occupational therapist, too.


Out of My Mind
I've recently developed a renewed interest in Young Adult fiction and as I was perusing the YA section at my local bookstore, I came across Out of My Mind. This book was chosen as a staff pick and had this recommendation next to it: "The main character of this book is an 11 year old with cerebral palsy who has never spoken a word in her life. This book is a powerful, moving, realistic, hopeful look at a life that most of us cannot even imagine. Seriously, do yourself a favor. Check it out!" With a recommendation like that, I immediately bought it. And then I gave it to my nephew for Christmas before I had a chance to read it, so it's still on my list of books to read.


Wonder
"I won't describe what I look like. Whatever your thinking, it's probably worse." With a line like that, I just want to keep reading. This book is about a 5th grade who was born with a facial deformity and is entering a mainstream school for the first time. This book was highly recommended by Stacy, over at Starfish Therapies.


The Journal of Best Practices
I'm a huge fan of the Modern Love series in The New York Times. When I read David Finch's essay in The New York Times I was moved, entertained, and hopeful all at once. I expect his memoir will do the same.


The Happiness Project
I've been curious about this book since it first came out. Since I'm on a kick to develop more balance in my life, I decided now was the time to check this book out from the library. This seems like the kind of book that I will wan to read slowly and reflect on, so I will probably end up buying a copy for myself. Unless the library wants to loan it to me for about 6 months :)


Quiet
I found Susan Cain's TED Talk on the power of introverts to be inspiring and eye opening. As an introvert myself, of course I think introverts are capable of doing great things ;) I read a review of this book in which the reviewer said it helped her better understand her children, as she and her children don't have the same personality types. I'm all for gaining a better understanding of how different people perceive the world they live in.


Kids Beyond Limits
This book came highly recommended by Shasta when she participated in my Parent's Perspective series. A week later, Michele of CP Daily Living listed it as one of her must-have resources. I took that as a sign that I need to read this book. I checked it out from the library, but I only made it through the first few chapters (because I was super busy, not because it wasn't worth reading), so it's on my list to dive back into when I have a little more time.


Executive Skills in Children and Adolescents
In October, I started a new job, and I am absolutely loving it! The school I now work in has a huge focus on executive function skills. Now that I've settled into my new job and feel like I know my students, I feel like it is time for me to dive into learning more about the nuts and bolts of executive function skills.

Have you read any of these books? What's on your reading list this year?

*This post contains affiliate links.

Tips for teaching kids to write thank you notes

image credit

My students blessed me with many thoughtful gifts this holiday season. And then they blessed me all over again with their smiles of pure joy and happiness when I handed them a thank you card. Seriously, my students were so happy to receive a thank you card. But that's what gift giving is all about, right? Feeling good about brightening another person's day.

With the holidays now behind us, what better time to instill a sense of gratitude into children? And it's great for getting in a little handwriting practice, too!

Here are four basic guidelines to follow:

1. Start with a greeting
2. Say "thank you"
3. Share how it made you feel or why you really like the gift
4. End with a closing

A few more tips:

• Get your child involved. Fold a blank piece of paper in half and have your child decorate the front or write 'Thank You' on the front.
• If your child is not yet able to write, write the letter yourself, and then have your child sign his or her name (even if it's just scribbles).
• Make a card on the computer. Allow your child to type the thank you letter. This takes the pressure off of the physical act of handwriting.

It doesn't have to be complicated. A thank you note from a child can look something like this:

Dear_______________,

Thank you for the ____________________.

I really like _________________________.

Love, (or Sincerely,)

_________________

See how simple it can be?

A Parent's Perspective - Clara's Happy Thumbs

Please join me in welcoming Lisa, mother to adorable Clara, age 10. Clara is a sweet little girl with DiGeroge Syndrome (a.k.a. VCFS or 22q11 deletion) and autism. You might recognize Clara as the little girl who impressed and gave hope to so many this past fall with her rendition of the Coppelia ballet, which circled the world on YouTube. I am honored to have Lisa and Clara stopping by today!

Our life in four words:

For the last 10 years, I have found that our lives have been filled with many extremes:

Chaotic to Peaceful – I’ve struggled with finding the right balance between being a mom, overseeing a home-based autism program, managing therapists, working full time, booking and taking Clara to appointments, and advocating with the school and others.   During the first few years I found it highly stressful to maintain this fine balance and I struggled to find peace in my life.  Then about 2 years ago I realized that I would never find peace if I waited until the chaos ended – but I could, through my faith and accepting that I was doing the best I could, find peace amidst this chaos.

Compassion to Persistence – Being a mom to a special needs child has enabled me to expand my capacity to love unconditionally, not just Clara and her sister, but those who are differently abled. When opportunities arise, I am always amazed at how easily this gentle child connects so easily to these other special people of all ages. This unconditional love enables me to see past Clara’s disabilities and believe in her potential and persistently encourage her to keep trying new things. Persistence also extends to my need to advocate on her behalf without giving up in order for her to have the supports she needs at school and in her community, as society does not yet create equal opportunities for special people like Clara.

Five qualities I look for in a therapist:

1. an ability to put aside all judgments about what Clara is capable of accomplishing
2. to abolish any inhibitions and be as fun and crazy as any child
3. to be completely reliable, showing up on time to work with Clara
4. to be present when working with Clara ie. keeping any mental “baggage” at the door so it does not affect therapy time with Clara
5. a willingness to go above and beyond the “call of duty” when possible (eg. taking Clara on an outing, videotaping her dancing and posting it on You Tube!); this has built strong bonds between Clara and her therapists which enable wonderfully amazing things to happen!

Three resources I can’t live without:

1.  My laptop, phone and internet connection: for research; to connect with other parents and healthcare advocates/professionals for moral support; autism and special needs related APPs; my iphone camera and video to capture priceless moments to help document our journey.
2. My books on nutrition and special diets: eg. SuperBaby Food by Ruth Yaron, NourishingTraditions by Sally Fallon, Healingthe New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies by Kenneth Bock, Breaking the Vicious Cycle by Elaine Gottschall; if I had not been able to heal Clara’s gut first, her persistent cycle of eating – vomiting – diarrhea would never have been relieved, enabling her to have the focus to succeed in her home based autism program. 
3. Resource of people I have come to rely on and can “bounce” ideas and concerns off of:  autism consultant, Jonathan Alderson, who founded the Intensive Multi Treatment Intervention Program (www.imti.ca); our naturopathic doctor; DAN doctor (www.integrative-medicine.ca/ ); osteopath; and chiropractor (www.turnerwellness.com).  Build a team of people, who believe in the potential of your child, around you and your child for support.

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

Believe in the possible. Once Clara was walking, she had difficulty still going upstairs by herself and insisted that she be carried up when it was bedtime.  Wanting her to become more independent and believing that she could do it, I sat on the top of the stairs one night while she cried on the bottom step. I encouraged her with lots of enthusiasm and excitement, never doubting for an instant that she could climb the stairs by herself. Over a 25 minute period, Clara very slowly, one step at a time, climbed the 14 steps to join me at the top!  I picked her up, spun her around and kissed her all over and told her that she could do anything she put her mind to. Every day after this, Clara walked up the stairs herself with confidence.

Set the child up for success: This builds confidence and the desire to continue striving to accomplish more. If the child is having difficulty mastering a task, find ways to break it down into smaller bits, for which the child is able to succeed.  Then as the child succeeds, celebrate like crazy with high fives, a happy dance, or lots of praise.  At one time Clara had difficulty tying her shoelaces. She would work at it to no avail. So, we broke the exercise down into smaller bits: first she learned to make two bunny ears and hold them in each hand. Then she learned “how to go over and under and pull”. Then we had her put the two parts together and gradually she mastered this exercise. Every step of the way we celebrated and cheered her on.

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

Never give up on your child, regardless what professionals say. Believe in your child’s potential and do whatever is within your ability to nurture his or her interests. During the first three years of Clara’s life, doctors and specialists asked if we wanted them to intervene medically or just let her die. Another doctor told me that she would spend her life going in and out of hospital. A speech therapist told me that she would never talk. Her autism diagnosis was given as if it were a life sentence. If I had chosen to focus solely on all of this, it probably would have affected what I believed she was capable of; instead, I shelved those beliefs and continued to love and support her in whatever way possible providing her with various different opportunities. Over time, none of the “sentences” proved true; in actuality, Clara is now a tiny bundle of energetic joy, who, when she was ready, walked at age 4 and started speaking when she was 6. Her fascination with ballet, her amazing memory, and desire to perform resulted in her learning the fine details of the Coppelia ballet, which, when videoed, went viral on you tube in the fall 2012. She is now by far the most extroverted member of our family!

One dream for my child:

Recently, I asked Clara what she wanted to do; despite her difficulty with her expressive language, Clara managed to say: "I want to make people laugh. I want to dance on a stage." Clara's spirit, determination, and response to this question have compelled me to do whatever is possible to assist her in her development to help make these dreams of hers a reality.

      

      

What I do to rest and recharge:

I have been blessed in that many years ago my grandparents decided to build a small cottage on a lake north of Toronto. Being able to escape to this natural surrounding alone or with the girls, for even a day during the spring, summer, and fall, to read, rest, and relax rejuvenates me. I find the sound of water unbelievably soothing. Also, finding time to go for a walk alone there or in the city gives me opportunities to think through issues and plan my time – a solace that helps me keep everything in perspective and helps to connect me with my faith and the peace I so treasure.

Lisa, thank you for stopping by to share your perspective! Readers you can follow Clara on her blog, Clara's Happy Thumbs, on Facebook, Twitter, and YouTube.

And for those who missed it, here's Clara's inspiring dance:

I'm loving...

Schoodles Fine Motor Assessment.
School-based OTs: you know how you always plan to put together a nice little set of essentials that you can just grab when you need to quickly assess a student's baseline? And then you never do, because doing so never seems to make it to the top of your To-Do list. Schoodles is the answer. Seriously loving it. Full review to come soon.

Rush Hour, Jr.
The Rush Hour app is one of the first iPad apps I downloaded, but I really don't use it all that often. What I am loving, is the actual Rush Hour, Jr. game. My favorite part? The visual perceptual challenge of setting it up. Placing the cars on the game board to match the placement on the cards is great for working on developing visual spatial reasoning skills.

Spot It
Awhile back, I shared that Blue Orange Games was giving away a copy of their game, Spot It, to the first 200 therapists who signed up for the Blue Orange Games newsletter. I've received my copy of the game and this game is perfect for developing visual perceptual skills. Especially figure ground skills.

Shelby's Quest
I love that occupational therapists are getting involved in app development! I may be partial, but I feel that OTs bring a unique perspective to the table when developing an app and consistently design great apps. Shelby's Quest is no different. Developed by Kami Bible, pediatric occupational therapist and founder of Doodle Therapy Apps, Shelby's Quest is a fun and engaging app to help with developing pre-writing skills in children with special needs. Full review and giveaway to come, so be sure to check back!


*I received complimentary copies of the Schoodles Assessment and the Shelby's Quest app, but I seriously had no idea how much I would love them. Opinions expressed are entirely my own. This post also contains affiliate links.

I choose...

+ to blog less.

+ to slow down.

+ to write purely for the joy of writing.

+ to read books just for fun.

+ to practice yoga.

+ to watch more TED Talks.

+ to listen to more music.

+ to take more pictures.

+ to be positive.

+ to show gratitude.

+ to leave comments on the blogs I read.

+ to promote occupational therapy.