Top 12 of 2012

As 2012 draws to an end and I reflect on the past year, I realize how blessed I am and what a year it has been! 2012 will always be remembered as the year I got engaged, discovered the ski slopes of Utah (sorry, Colorado), got married, hiked the Grand Canyon, rode my bicycle across Iowa (for the fifth time!), enjoyed one last perfect night in LA, moved across the country, settled into a new city, and started a new job!

2012 was also my first full year of blogging, which I've discovered is not as easy as so many bloggers out there make it appear. This past year has been full of blogging highs and lows. The lows including not having the time or blogging energy to share everything that I would like to share with my readers. Also, finding a balance between work, life, and blogging has been an ongoing challenge. So far, the highs continue to far outweigh the lows, and I look forward to another year of blogging, although possibly not as consistently this next year, as I try to figure out this whole blogging balance.

Now onto the highs! Blogging has given me the opportunity to connect with readers of all kinds, from parents to other therapists to prospective occupational therapy students to app and product developers. People that I never would have connected with, without this little blog of mine. I've also had  more visitors to my blog than I ever imagined possible. To all of my readers, I would like to extend a HUGE thank you! Thank you for reading and for sharing your thoughts with me. To all of the bloggers who have welcomed me as a guest blogger, Thank You! To all of the parents who have participated in my Parent's Perspective feature, THANK YOU! My blog wouldn't be where it is today, without all of you!

As I reflect on my year of blogging, I tried to come up with my Top 12 of 2012, as the title suggests, but I couldn't narrow it to only 12, so let's disregard the title and reminisce about the past year!

Based on page views, it seems like readers really enjoy easy to implement tips, like ways to adapt paper for math and tips for teaching shoe tying. DIY therapy ideas also seem to be a big hit. Some of readers' favorite DIY's included how to make a slant board, how to make an adapted crayon, and how to make a weighted glove.

This year, I began using my iPad as a therapy tool and reviewed some of my favorites here on my blog. For handwriting, I especially like Ready to Print and LetterSchool. A couple of my favorite apps for use in early intervention are Baby's Musical Hands and Baby Finger. I hope to continue reviewing my favorite apps in 2013 and sharing how I use different apps therapeutically. I will keep my iPad apps page updated as I do so!

By far, my proudest blogging moment of 2012 was debuting (and keeping it going!) my Parent's Perspective feature. I could never choose just one for this list, so I recommend you head over to my Parent's Perspective page and check out all of the words of wisdom shared by so many amazing parents. If you read only one thing on my blog, I would recommend that it be the (almost) weekly Parent's Perspective features.

2012 was also year of guest posting for me. Some of my favorites included a post on Down syndrome, this post all about Sensory Processing Disorder, '5 things your school OT wishes you would do this summer', and 'Tips for feeding your toddler with autism'. I was also honored to guest blog for Ellen at Love That Max, with my 'Summer fun for kids with special needs' post

While this next post was not a big hit in terms of page views, I think it is something that all OTs can relate to, and as I've mentioned, it's something that I'm continually working on. In honor of World OT Day, I wrote about how I try to find balance.

Thank you again for reading and here's to a happy and balanced 2013!

A Parent's Perspective - Team Aidan

Today I have another inspiring mother stopping by to share her perspective! When Heather is not juggling the myriad of tasks involved in raising a child with special powers, she can be found singing in her kitchen using a spatula as a microphone or blogging at Team Aidan. The star of Team Aidan is a handsome young man (seriously, check out those eyes!) who has a significant undiagnosed developmental disability. He is non-verbal, uses a power wheelchair for mobility, and was diagnosed with Epilepsy two years ago.

Our life in five words:

Complex heaping mess of wonderful. (and because I loved the six word memoir project, I'll throw in this one: Walked through heartache gracefully. Loved fiercely.)

Four qualities I look for in a therapist:

1. Ability to respectfully work as team.
2. Willingness to try new things.
3. Hold high expectations for my child.
4. Have strong communication skills with me and my child and the myriad of other professionals involved.

Three resources I can’t live without:

1. Blogs. Every person has a story and I have been educated, encouraged, and challenged when I read blogs about other people living with disabilities. Here are some of my favorites: Outrageous Fortune, Uncommon Sense, Fighting Monsters with Rubber Swords, Happy Being Trevy, Bringing the Sunshine
2. My Durable Medical Equipment (DME) guy. Yeah, I don't have a pool guy or a lawn guy but I have a great DME guy. Our DME guy meets us at school, home, or the clinic and has advised us on a variety of accessibility issues. The best part is that we get to try equipment before we buy it. Sounds like a no brainer but it's not standard in DME world. He and his administrative assistant are very accessible to me.
3. My medical dictionary for a few reasons. I'm a bit of a nerd so it's actually fun to have. As opposed to a google search, I can be sure that it's a reliable source. I always ask for a copy of the medical notes from each appointment. Yes, I have super huge binders complete with tabs to differentiate between specialist. The binder also has one of those fabulous plastic business card holders so I have all contact info at hand. Sometimes doctors use language in speaking to me that is different from what they write in their notes. It's helpful to have this dictionary on hand to make sure we really did discuss what the doctor recorded.

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

Help me meet realistic, functional goals and cut me some slack. I've always said that the biggest gift I was given in Aidan's early days was a Speech Therapist who was also the mom of a child with a disability. She would say, 'It would be best if you could do XYZ but it's more realistic to think you'll do ABC, and that's great." I'm also much more apt to carry over therapy at home when I understand why we're working on a particular skill. Let's make it functional. For example, Aidan doesn't have any cats in his life at all. Let's work on words like "milk" or "help" before "cat." I'm taking in information from many professionals and I get to make the final decision about how to implement these goals. Aidan had an eye doctor once who wanted him to wear blow up arm bands to stop him from taking off his eyeglasses. His OT loved the idea of him isolating his finger and reaching for his glasses. I had to make a decision that was best for Aidan and would work for us as a family which means one of those professionals didn't get their goals met. Just know that I'm willing to work hard for my son's progress, but therapy is one small piece of our world and I'm constantly working to bring balance into our life.

Be willing to think outside the box/be surprised. Clinically speaking, Aidan was a prime candidate for a manual wheelchair as he has a significant cognitive disability and motor planning impairments. Both my PT and I believed he would primarily be pushed in a chair while occasionally attempting to move it himself. For kicks and grins we let him try a power chair with no expectations of success. He surprised us all. It has been a life changer. Aidan is an incredible driver and now has independent mobility because of his power chair. Here's the best part: in my head I believed a powerchair would decrease his already limited walking skills. It has done the exact opposite. Aidan is so motivated to move that he has gotten stronger in his walking skills and more precise in his driving skills.

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

Find other parents. Someone who has been there and understands both the emotional aspect of raising a child with a disability and is able to direct you to your local resources. Ask them out for coffee. If you need to pour out your heart without worrying about interpreting the lingo, do it and they will listen. Then ask every question you have and listen as they put in their two cents. This is my favorite part of being a "been there, done that, bought the t-shirt mom" living in Disability World. I love connecting with other moms. In specific regards to the diagnosis of Epilepsy - get educated and surround yourself with support so you don't get overwhelmed. Epilepsy is complex. There are so many different kinds of seizures and treatments. As a parent, I feel more confident having done my research so I can really partner with Aidan's physicians to treat him.

One dream for my child:

This is a hard question because I can't answer it without thinking about broken dreams. It's always been important to me that he has real friends, peers who naturally want to be around him. Not ones that have to be written into an IEP plan. This dream is not very realistic for Aidan. That being said, I believe he will always have people in his life who love him.

What I do to rest and recharge:

Read and write. Words are my soul food. My favorite place to be in snuggled up in bed with hot chocolate and a good book... or on the beach. I don't do it enough but a brisk walk at the ocean is always healing.

Heather, thank you SO much for taking the time to share your perspective! Readers, want to read more? Check out her blog at www.teamaidan.wordpress.com. Not sure where to start? I recommend you start here. Also, you can follow Team Aidan on Facebook and Twitter.  

Five Friday Features

(Yay for a bake sale at school this week!)

1. You may have noticed a new button on my sidebar this week. I'm a proud AOTA member. Are you?
2. Speaking of AOTA, the AOTA store is offering a 15% discount off AOTA published books and CE until December 12. I think I will take advantage of this sale and pick up this CE on CD on transition services.
3. "The Autism Advantage" in The New York Times Magazine profiles a company called Speecialisterne, which is located in and places adults with autism in the workplace. They are in the process of opening a company in the United States. There are so many services in place for children with autism, but the resources are severely lacking after age 21. I am so happy to see a company like this succeed in helping individuals with autism. It reminded me of an article I read recently, Over-Educated, Under-Employed: The Plight of the Adult Aspergian.
4. Last week I ran a series of gift guides, including great gift guides by other bloggers. Ellen at Love That Max is out with another great one this week. Click here to check out here list of gifts that benefit kids and adults with special needs.
5. PediaStaff's blog has been nominated for the 2012 EduBlog Awards in TWO categories! Best Educational Use of a Social Network and Best Educational/Technical Resource Sharing Blog. If you haven't already, be sure to check out PediaStaff's blog and take a moment to vote for them! 

And here's a bonus link:

The National Fragile X Foundation is sharing a series of videos which contain stories of hope told by parents. Be sure to check out the Forward Thinking series of videos. I've included the first one below!

A Parent's Persepective - Jester Queen

Let’s give a warm welcome to Jessie Powell of Jester Queen! Jessie is mom to Caroline, 9, and Sam, 5. Both of her children have been diagnosed with Asperger's Syndrome, which manifests in drastically different ways in each of them. Caroline struggles with gross motor dyspraxia and trouble processing abstract concepts, while Sam has behavior and sensory processing issues. Take it away, Jessie!

Our life in five words:

Dyspraxic, Urgent, Scheduled, Bouncy, Huggy

Four qualities I look for in a therapist:

1. Flexibility. Caroline has ODD. Sam has behavior issues out the yin yang. If you try to force either of them to do something through confrontation, you will both lose. Our therapist when we first moved down to Montgomery (who was not our very first therapist – that was in Lexington) was an awesome lady. She was not, however, a good fit for Caroline, because she was too much like me, too blunt and direct. Caroline responds better to a back door approach.
2. Honesty. Here’s the cool thing about that therapist. She was willing to make the call that this wasn’t working. Without acting like a jerk, she helped us find a therapist who was a better fit for Caroline’s personality, and she remains one of Caroline’s most ardent cheerleaders.
3. Creativity. Sam’s big thing in therapy is “no, I can’t.” But his therapist has turned that on its head. When he comes in the door, she says, “Sam, I’m having trouble with my pencil. Help me hold it right.” And within moments, he’s forgotten that he “can’t write” or “can’t color in a box”. She anticipates his objections and develops creative workarounds to help him make progress.
4. Playfulness. I’m bad at childhood. I wasn’t very good at it as a kid, and as a consequence, I struggle with enjoying kids’ games. My kids value their therapists because they absolutely love  children’s games. They enjoy the crazy funny things they have to do to make my kids move their bodies in space.

Three resources I can’t live without:

1. Fidgets. Caroline’s first OT gave her putty, and it was the first time I’d seen her grasp and hold something tightly in her hands. Even as a baby, Caroline had a very weak grip, and it took a lot of smooshing to help her get the hang of it. She’s also got to have something in her hands or she can’t focus. We have sand animals, koosh balls, rubber erasers, and a dozen other things to keep those fingers busy.
2. John Elder Robinson’s Look Me In The Eye. I love this guy’s voice. He describes his own growing understanding of what it’s like to live with Asperger’s in an approachable way.
3. Temple Grandin’s Thinking in Pictures. This should be required reading for parents of kids with an autism diagnosis. It’s a reminder that whatever changes we parents are having to make in our lives to adapt, our kids are making a hundred thousand more. And it’s a reminder that autism is not a death sentence. It doesn’t mean your child won’t be able to achieve and succeed.

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

 

Sell books.

No really. Sell books. Be prepared for parental shock. Take a minute to explain what’s going on when you start your first session. Pause between activities to make sure Mom and Dad are acclimating as well as junior. When the inevitable tears begin, take a minute to reassure the grownups that this is normal and that the same activity making their child cry now will be a triumphant success very soon.

And to help them understand, have a lending library or offer books for sale. Our first therapist gave us a handbook. We bought it from her because I could tell right away that I wouldn’t be giving it back. I don’t have it anymore, and I’ve forgotten the title. It was a brown workbook. But it was such a wonderful resource for me. It helped me figure out not just how to anticipate some of Caroline’s needs, but also how to tell when I could combine therapy and parenthood and when I ought to just back off.

A word of advice for the parents of a child newly diagnosed with Asperger’s:

Not all kids with Asperger’s struggle with expressing love in conventional ways, but many do. If yours is one, don’t despair. Your child loves you very much, even if he or she isn’t doing any of the things you have been prepared to expect that mean love. Instead, love is being expressed in offbeat and unexpected ways.

Caroline had this paper towel holder that she was convinced went with her train set. She called it her trestle and lugged that thing everywhere with her. She didn’t say the words “Mom” or “love” on her own, even though she could quote episodes of Dora the Explorer verbatim and at length. It took me two months to realize that when she shouted “trestle trestle” at bedtime, she was saying, “I love you, Mom.” I finally stopped saying, “Yes, your trestle is right here,” and handing it to her, and saying, “I love you, too, Duckie.”

Sam talked late and his first words were angry ones. He struggled so much with his inability to communicate his own wants and needs that every waking moment was a battle. He showed his love with laughter. He’d be in the middle of some meltdown, and he’d just break out of it and laugh madly for a few minutes. It was disconcerting, but also comforting. He was still out of control in those moments, but he was saying, “I love you.” 

With therapy and love, things improve. The early days of a diagnosis are so stressful. You have to manage and adjust your own hopes and expectations while dealing with a whole host of emotions from those around you. Many families struggle with loved ones in denial. Don’t let them get you down. Remember to breathe, accept help where it is offered, and do what you need to do for your family. 

One dream for my children:

That they should grow up and live their own dreams. Our family is lucky. Nobody has ever questioned our kids’ innate intelligence. Every doctor, every therapist has always started our conversations with, “you have a very bright child here.” I have no doubt that if these kids want to go to college, they will be able to do so someday. And if they want to do something else entirely, I am completely confident of their ability to figure it out and soar. 

What I do to rest and recharge:

I take my own meds. Seriously. I struggle with bipolar, and that flatly cannot get in the way of my children’s lives right now. I read and write. A lot. I wish I could say I had a regular date night with my husband, but quite frankly, that’s not happening. There is one sitter who can manage Sam’s behaviors, and when she’s available, we go out. Otherwise, one of us has to be with the kids if they’re home. But we know to trade out and take care of ourselves or we’ll get burnt out and run down.

Jessie, thanks so much for stopping by to share your perspective! Readers, be sure to visit Jessie’s blog at www.jesterqueen.com. Not sure where to start? Check out this post to learn about Caroline or this post to learn allabout Sam. You can also find Jessie on Facebook, Pinterest, and Twitter.

Are you a proud AOTA member?

If so, show your support with AOTA's new button, seen above (and on my sidebar). Click here to download the Proud Member button (no surprise here, but this is a member only feature).

And while I'm on the topic, here are a few reasons why I'm a proud AOTA member:

• I'm proud to support AOTA's advocacy efforts, both for the profession and for consumers.
• I'm so happy when my OT Practice magazine and AJOT arrive in my mailbox.
• I love receiving a discount on AOTA products and continuing education.
• I learn quick tidbits about current events and news in my inbox from AOTA's 1-minute update.
• I checked OT Joblink regularly after my recent relocation across the country.
• I can always get any practice related question answered on the members-only forums on OT Connections.
• AOTA's website is full of so many useful resources, from Fact Sheets to research to AOTA official documents. You can really find everything you need!