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!

More great holiday gift guides!

Photo Credit: Queen Bee of Beverly Hills

I've come across so many great gift guides this year, you should be able to find something fun (and therapeutic!) for all of the children on your list. 

Gift Guides by Occupational Therapists:

Dana Elliot is a pediatric occupational therapist who blogs at Embrace Your Chaos and she has got you covered this holiday season:

• A few of my favorite things includes tong games, lacing and stringing toys, building sets, gross motor toys, and craft sets.
• Toys and games to build visual perceptual skills explains what visual perceptual skills are AND gives toy suggestions to work on developing visual perceptual skills.
• Toys and games to build auditory processing skills provides a list of toys and games to develop, you guessed it, auditory processing skills.
• In addition to these great lists, Dana has also created lists on Amazon of fine motor games, gross motor games, and fine motor/visual motor toys. I told you, she has got you covered.
• Dana has even put together a list of gift suggestions for the teachers (or therapists) in your child's life! I told you - she has got you covered!

For more great suggestions from an occupational therapist, check out Mama OT's holiday gift guides:
10 Holiday Gift Ideas for Babies
10 Holiday Gift Ideas for Toddlers
10 Holiday Gift Ideas for Preschoolers

Pediatric OT Miss Mancy has created kits for children with autism. Check out the Fun Time Kit for fun fine motor activities, the Predictability is Key Kit for a customizable visual schedule, and the Quiet Time Kit for calming tools. Miss Mancy also gives you the option of creating your very own Holiday Kit, customized to meet your child's needs. Also be sure to check out the rest of Miss Mancy's shop for creative and fun activities to promote fine motor and handwriting skills. Many of the items are handmade by Miss Mancy herself!

Looking for some technological gifts? Glenda, of Glenda's Assistive Technology Information and More, has put together a comprehensive list of toy ideas and resources for children with disabilities.

Gift Guides by Pediatric Physical Therapists:

Stacy is a pediatric physical therapist who blogs at Starfish Therapies. She frequently blogs about toys she uses during therapy and in Toys, Toys, Toys and More Gift Ideas for the Holidays, she shares some toys she and her colleagues use in therapy.

Tana Jimenez, PT, has put together several toy lists, including ride-on toys.

Natalie, a pediatric physical therapist, of Beyond Basic Play has also recommended some toys that she uses in therapy, including this trike.

Gift Guide by a Speech Language Pathologist:

For language learning toys, check out Mindi's Holiday Gift Guide for infants to teens at Simply Stavish. I love that some of her suggestions (like Mr. Potato Head, LEGOs, and Snap Circuits) overlap with my own, which means you can get motor skill development and language skill development out of those toys!

Parent Recommendations:

As always, Ellen at Love That Max has put together a fantastic holiday gift guide for children with special needs. This guide is full of toy recommendations from parents of children with special needs, and it is divided into useful categories like toys that help with speech and communication, toys that help with gross motor skills, toys that help with fine motor skills, and many more.

No Times for Flashcards has a holiday gift guide with suggestions based on how much her own children like to play with the toys on the list. Looking for books for the children in your life? No Time for Flashcards has a guide for books, too!

Do you have any holiday gift guides to add to this list? Please share in the comments below!

*This post contains affiliate links.

Holiday Gift Guide 2012 - Gifts for "sensory kids"

Has your child been called a "sensory kid?" Is your child always on the go? Constantly climbing, jumping, spinning, running? Or is your child overly sensitive to sensory stimulation, covering his ears in loud places or preferring to only wear soft clothes? Today I'm going to provide some gift suggestions for Sensory Seekers and Sensory Avoiders. Remember, you know your child's preferences best ant it is not uncommon for children to demonstrate behaviors of both sensory seeking and sensory avoiding.

Sensory Seekers:

Sensory Seekers are those kids that are always on the go. They may be climbing on furniture, jumping off of furniture, or touching everything they see. Sensory Seekers crave sensory information and need additional sensory input to regulate their bodies.

Trampoline with a handle

- For the sensory seeker who is always jumping and on the go. A small trampoline, used with supervision, can provide the sensory input your child is seeking.

Rody Horse

- A Rody Horse is fun to bounce around on, providing lots of movement, as well as vestibular input.

Pillow Racer

- Pillow Racers are a soft ride-on toy that are easy to maneuver in all directions, including spinning in a circle. Sensory seekers may enjoy the vestibular input provided by this toy.

Snug 'n Secure Swing

- For little ones who love to swing, the Little Tykes Snug 'n Secure Swing is a great option.

Edushape balls

- Edushape balls provide a great tactile experience for sensory seekers.

Pounding Bench

 
- A classic pounding bench develops hand eye coordination AND it provides proprioceptive feedback to the hands and arms, for those who seek additional input.

Gelli Baff

- I haven't actually seen Gelli Baff in action, but it looks like an interesting concept. It turns water into "goo" and back. Could be a good tactile activity for sensory seekers. Has anyone else tried this? [Update: This might not be the best for your plumbing. Please see the reader comments below]

Zibbies

- Does your child need a fidget to keep his or her hands busy? Zibbies are stuffed animals with koosh ball-like hair. 

Sensory Avoiders:

Sensory Avoiders are those kids who avoid sensations or become easily overwhelmed with too much sensory input. Too much sensory input may cause these children to tantrum or shut down.

Sound Blocking Head Phones

- Sound blocking head phones can be just what the sensory avoider needs to get through certain situations, such as a noisy car ride or a wait in the reception area of the doctor's office. These also come in pink or blue.

Seamless Socks

- Seamless socks can work wonders for children who are bothered by tags and seems in their clothing. Also look for tagless clothes, which luckily is not hard to find these days, since most children's clothing has now gone tagless.

Crayola Mess Free Markers

- For children who do not like to get their hands messy, Crayola's Mess Free Markers are a good option. The only downside is, you will also need the appropriate paper to go with these markers.

Kids Tent

- An indoor child-size tent can create the perfect getaway or quiet spot for the sensory avoider. Throw some soft pillows and blankets inside to create a safe sensory spot for your child.

Gifts for the Sensory Seeker or Sensory Avoider:

Some toys can be appropriate for both Sensory Seekers and Sensory Avoiders. Here are a few examples.

Touch and Feel Books

- For sensory avoiders of tactile input, Touch and Feel books are a safe way to slowly experience a variety of textures. For sensory seekers, the tactile input provided by Touch and Feel books can be more engaging than a typical board book.

IKEA Hammock Swing

- For older children who like to swing, this hammock swing from IKEA provides vestibular input. Sensory avoiders may enjoy the cozy getaway that a hammock swing provides.

Sensory Books:

There are now several books that help explain sensory "issues" to children. Similar to a social story, these books allow the child to relate to a character who is experiencing the same sensory sensitivities as him/herself.
 

Sensitive Sam

- Sensitive Sam shares a typical day in Sam's life, in which his over sensitivity causes distress in his life. Sam's teacher recommends that he go to an occupational therapist, and OT is also described in a non-threatening, kid-friendly way.
  

Arnie and His School Tools

- Arnie and His School Tools tells the story of Arnie, who is an active boy who had trouble paying attention in school until he was given the sensory tools he needed to meet his sensory needs.

Squirmy Wormy

- Squirmy Wormy tells the story of Tyler, who has autism and sensory processing disorder. Tyler learns about sensory processing disorder and what he can do to help himself feel better.

Why Does Izzy Cover Her Ears?

- Why Does Izzy Cover Her Ears? shows how Izzy learns to cope with sensory overload in her new school. This is the only sensory book that I have come across that features a girl as the main character.

Please add to the list! What are must-haves for the sensory seekers or sensory avoiders in your life?

Looking for even more ideas? Be sure to check out my Amazon Store!

*This post contains affiliate links.

A Parent's Perspective - More Than Words

Let's give a BIG welcome to Stacey, from More Than Words! Stacey is mom to 9 year old Carter who has a developmental disability and is non-verbal. Stacey is also a fierce advocate for those who communicate differently. I LOVE her words of advice for therapists! Read on to find out what it is.

Our life in five words:

Busy, positive, loving, fun, routine.

Four qualities I look for in a therapist:

1. Positive attitude.
2. Motivating.
3. Open and honest, a good communicator, keeps me informed.
4. Sees my son's potential, holds high expectations, raises the bar and challenges my son to work toward reaching his full potential.

Three resources I can't live without:

1. Vantage Lite speech device & Prentke Romich AAC Language Lab website.
2. PrAACtical AAC blog 
3. AAC Institute Parents Corner

Two words (or more!) of advice for therapists working with children who are non-verbal, with developmental disabilities:

"Not being able to speak is not the same as having nothing to say." - Rosemary Crossley

A word of advice for the parents of a child who is non-verbal:

• Don't follow the 'let's wait and see' approach taken by some professionals.
• Don't "let years of precious time go by without providing [your child] with the tools they need to be successful communicators and learners." (from Early Intervention and Augmentative Communication article)  
• Everyone communicates - so find the best way for your child to do so.
• Get started early and don't give up.

One dream for my child:

That he reach his fullest potential and live a happy and fulfilling life.

What I do to rest and recharge:

• Date night with my husband.
• Get together with friends.
• Walk.
• Blast my music and dance!      

        

Stacey, thanks so much for stopping by to share your perspective! Readers, be sure to visit Stacey's blog at www.mthanw.blogspot.ca. You can also follow Stacey on Facebook or Twitter @MoreThnWords