The only thing sexier than a minivan...

Our new mobility van: a 2015 Toyota Sienna with VMI in-floor, slide-out ramp conversion.

Bertrand is convinced that all the girls will love it.  ;)

Field Trip: Little Dell Reservoir

Little Dell Reservoir

Today, Bertrand's class had a field trip to Little Dell Reservoir to go canoeing courtesy of Splore, a great local organization that provides opportunities for adventure to people with physical and/or cognitive disabilities.  And, an adventure it was!  The entire class--including Victoria--had a fantastic time.  :)

On the school bus and ready to go!

Headed down to the boat ramp.

The very first canoe to be loaded and pushing off.

Victoria serves as scout, pointing the way.

Canoeing on a very windy day.

Paddling further out.

Pointing at Mama back on shore.

Paddling out to see some Canada Geese.

Being joined by a classmate in another canoe.

On the way back to shore.

Bertrand was singing a happy song.

Docking and unloading the canoe.

A very happy boater.

Canoeing wiped us out!

Can I go again?!

Surrounded by classmates/friends.

Little sister photobomb.

Boy, was canoeing fun or what?!

Can't wait to do this again next year!

NGLY1 Benefit for Jordan & Jessie!

The community of Jackson County, Georgia, USA is rallying around one of our amazing NGLY1 families: the Stinchcombs!

The Stinchcombs have one son and three daughters. Two of their daughters have recently been diagnosed through genetic testing they both suffer from the same very rare mutation in their DNA called N-Glycanase Deficiency, otherwise known as NGLY1. There are only 9 living children in the world with this rare genetic disease.

Everyday life for this amazingly resilient family is tough. Both girls who suffer from NGLY1 do not speak, they can not walk, they wear diapers, drink special formula, use wheel chairs and are completely dependent on their parents to meet all of their needs without ANY outside help.

Traveling anywhere as a family or even to the grocery store, is nearly impossible. The one thing that could change the quality of life for this precious family would be handicap accessible transportation equipped with a lift and large enough to accommodate the girls' two wheel chairs and the other two children. That is the goal of this fundraiser: helping them achieve mobility so their family can function more like an every day family! Please help us achieve this goal and beyond!

One $100 ticket admits two for dinner.

For tickets or donation information, please call Greg Reidling at 770-560-4628.

Accessible Home: Planning

Recently, we have been gearing up for some home improvement projects.  While being surprisingly handicap accessible for a 100 year-old home, our old gal needs a little bit of tweaking to be ideal for Buddy B.  The two top projects are: (1) Bertrand's first floor bathroom and (2) wheelchair ramps.

Bertrand has been using the potty at school every single day for over 3 weeks!  This magnificent milestone has accelerated our need to remodel his first floor bathroom.  And, the wheelchair ramps are simply overdue.

Now I will admit, accessible design is becoming a bit of a soapbox topic for me.  Why does so much of it have to be so ugly? So institutional?!  People with disabilities are just like any other human being--they can appreciate beauty.  In fact, I'd say Bertrand deserves it.

For over a year now, I have been researching, examining, asking nosy questions, and thinking about accessible design non-stop.  My conclusion is that beautiful accessible design is possible! BUT it takes more planning and thought than is typically given to these sorts of things.

For the bathroom, I don't believe that attractive accessible design will necessarily cost anymore than typical bathroom design.  However, I am finding that attractive, durable, well-integrated wheelchair ramps may cost a pretty penny--especially with the weather conditions we have in Utah.  So, out of necessity, the ramps will be coupled with a landscape overhaul.

While we are still in the planning stage, I ask you, my knowledgable and wonderful blog readers: what are your thoughts on accessible design?  Are there any resources you'd recommend?  Thank you.  :)

PS - For the curious, here are my pinterest boards for the bathroom and the landscape/ramps.

What counts?

This evening, Matthew and I watched the sunset from our house.  The sky was brilliant with orange and purple above the sparkling city below.  We watched the capitol building glow and the twinkling lights of downtown come alive.

The city view from our bedroom will soon be partially obscured by the leaves of a 150 year-old Elm in our front yard.  I love watching and listening to the birds in that tree as much, if not more than, the views of the city.

Last Friday, we met with a realtor to discuss finding a new, more accessible home.  Bertrand is only getting bigger and the cost to rehabilitate our current home for his (and our backs') benefit is substantial.  Before we make a major and costly decision, we're thoroughly evaluating all the options from various ways of fixing our current home to moving.

There are many factors to consider.  The ones that we and perhaps most people tend to focus on are the ones which are easily quantified, such as the cost of a commute (cost of a new car, hours in a car, maintenance, gas, parking passes, etc.).  Then there are related variables (opportunity costs) such as "extra time spent away from family".  How do you value that?

Or how about being only 3 minutes away from the main children's hospital?  ...especially when you have a child like Bertrand?  In even ONE emergency situation, how much would that be worth?

How do you value the joy of your very first home?  Your children's first home?  Your memories?  Your dreams?

Tonight, as I looked down at the sparkling city and spied swollen leaf buds on the Elm, my suspicion was that these intangibles are undervalued.

"Not everything that counts can be counted, and not everything that can be counted counts."

ASSIST Community Design Center

Video streaming by Ustream
Bertrand is nearing 50lbs.  It's a growing challenge getting him in and out of the house, up and down stairs, and using the bathroom.  Safety is a huge issue.  I fell down the stairs carrying him when I was 6 months pregnant with Victoria, and Bertrand was just 40lbs then.  I am forever grateful that only I got hurt that time.

So, I was excited to get in contact with the folks over at ASSIST today. ASSIST Inc is a nonprofit Community Design Center founded in 1969. ASSIST provides architectural design, community planning and development assistance to nonprofit and community groups, and housing and accessibility design assistance to low income households or persons with disabilities.

We have an appointment in three weeks (on February 1st) for property inspection and measurement.  Then in approximately 2-3 weeks, an ASSIST representative will be back with architectural plans and cost estimates, so we can start saving and budgeting for the remodel.  They also have a list of contractors we can contact for any project we choose to undertake.

We're looking to improve the accessibility to the back of our home (think: ramps) and remodel our first floor bathroom so Bertrand can use it.  (It would be nice to give him a shower or bath and not almost break my back or knees in the process.)  Those new kitchen counters will just have to wait.



The first floor playroom is morphing into his big boy bedroom.

The last few months, my heart has been heavy with the dawning realization that Bertrand's bedroom would have to be moved downstairs.  It's silly, but decorating Bertrand's first bedroom was symbolic for me.  At the time he had a projected 18 more months to live, but by setting up his room I was signaling to everyone, especially myself, that he was here to stay.

It was a monument to my love for him, and to the boyhood I believe he deserves.

And a wholehearted acceptance of the vulnerability that by nature is required to love him.

I am sad that he'll no longer be in his beautiful room.  And I am sad that (despite video baby monitors) he will be on a different floor from the rest of the family at night.  I don't want him to ever feel different or less loved.  It hurts me that this is his reality.

But, I know Bertrand will be fine.  We'll find a way to make his new room wonderful.  And Victoria can sleep over as often as she wants--same goes for Penny, his best furry friend.  (And his Mama too.)  And I know he'll enjoy less-achey parents.  He'll be happy.  He always is.

*Sigh*  I guess even hearts can have growing pains.

Signing Time: Book & DVD Signing

Bertrand and Victoria will be carting their Signing Time gear to the Melty Way in Midvale, UT on Saturday, December 22, 2012.  I can just imagine their little faces meeting Rachel in real life!  Their minds will be blown.  :)  All proceed go to benefit Operation Ghana, which provides scholarships to students attending the Ghana School for the Deaf.

Accessible Winter Family Vacation

The National Ability Center is where Bertrand does his hippotherapy in scenic Park City, Utah. The NAC is offering fantastic opportunities for family winter fun--regardless of age or ability. They can make any winter sport an accessible one!  Can't wait until the kids are older so we can give this a try.  :)  People from around the world visit this beautiful facility.  Financial Scholarships are available.

Garden After Dark

Victoria, Nana (Diane) and Bertrand enjoy sitting under a light filled arbor.

We're always on the hunt to make the holidays more inclusive for Bertrand. Halloween has been difficult because most homes have steps leading up to the front door.

(I just about killed myself taking Bertrand up to 2 homes last year, and he was lighter then. This year he weighs 49.5 pounds. Yikes!)

For the past several years we've optimized the treat-giving experience, so Bertrand can at least enjoy giving out little candy bags to the children who come to our house on Halloween.

However, it still bothered me that he couldn't get the full Halloween experience, because he loves being outside.

So today, Nana and I took the kids to the Garden After Dark held at Red Butte Garden.  The kids LOVED it!  Bertrand loved all the lights.  Victoria loved all the people.

Bertrand went dressed as an aviator and Victoria went dressed as a unicorn--both costumes were missing pieces by the time we arrived at the garden but they were still adorable.  :)

The night was such a success that we may take the kids to Boo at the Zoo next weekend, and I may look for a trunk-or-treat in our area.  We're so lucky that there are options like these for our entire family to enjoy the holidays!

Mind the gap.

Each session of Now I Can (intensive therapy) brings out changes in Bertrand. Only starting the second week of therapy, we've been seeing a BIG change: Bertrand is falling out of bed.

I promise you, we are not being neglectful. In the past 4 years that Bertrand has slept in a big boy bed, we've NEVER had this problem.

In fact, the first few times he did it last week, we thought it was accidental. We felt awful. (Luckily, its only a 2 foot drop and he didn't cry.)

We've kept erecting larger and heavier barriers at the foot of the bed. Then, last night, he made it out though this gap. And, via video monitor, proceeded to try to escape through it again!

The BIG change/issue is that Bertrand is actively trying to get out of bed--and succeeding!

On one hand, it is fantastic that he is strong enough and dexterous enough and willful enough to make it out. On the other hand, it is dangerous for him.

We've debated just putting his mattress on the floor, but that would be killer on our backs and my flimsy knee. Does this mean a hospital type bed/crib is in our future? :(

In typical fashion, I've held off on decisions for supposedly temporary measures (like this bed and the wheelchair) because such measures have the tendency of actually being permanent. I'm not ready for Bertrand to lose his kid's bed because, in the back of my mind, I still hope he has a chance for some semblance of a typical kid's life.

Well, regardless of whether I am ready for it or not, Bertrand may be ready. We'll have to start looking at bed options. Any suggestions? I can always keep telling myself it's just temporary.

Who can stay sad looking at a silly face like this?  :)

Bertrand's New Pool

Besides the therapist, a major component of aqua-therapy is the pool. Close to our house is the Salt Lake City Sports Complex. It was the official training venue for the 2002 Winter Olympics. The facility has two state of the art Olympic ice sheets, two Olympic sized pools and full fitness center. In their words it is "a world class experience as a magnificent cross-training center".

Sounds like it just might be good enough for Bertrand, right? ;)

Even more amazing than the venue is the fee because Salt Lake County has a Plus One Pass system.* This is a pass for Salt Lake County residents with a permanent disability providing entrance of one assistant for free, and their family rate is also discounted.

So, our family got an annual pass (which allows unlimited use of all Salt Lake County Fitness & Recreation Centers including land and water aerobics classes and access to the pools) for $215! And Bertrand can bring his therapist for free--all for less than $18 per month. My mind is just blown.

Maybe I will actually start working out so I can lift my 6 foot-tall boy some day!

*There is also a Salt Lake County Paralympic Sport Club and the Miracle League Baseball League! Oh, little Buddy doesn't even know what he's in for! Mama wants to see him in uniform. :)

New Adaptive Gear Registry

Bertrand walked our dog Penny to the bus stop today. :) Victoria was jealous.

Normally, I am not a fan of gift registries, but I like the idea of this registry by Tadpole Adaptive. So far, Bertrand has been lucky to have family and insurance cover most of his equipment needs but many special needs kids are not. Adaptive equipment is EXPENSIVE. This registry enables friends and family to chip-in for a big piece of equipment in a child's registry. Waaaaay better than a silver or china pattern you'll never actually use. ;)

Atlanta, here we come!

Workin' the switch like a boss.
Bertrand, Victoria, Nana (Diane) and I are heading down south tomorrow for the Abilities Expo in Atlanta! We're looking forward to seeing family, maybe some friends, and good ol' Ma Tech! ;)

School Bus!

Waiting for the school bus.

Getting buckled up on the bus.

Peaking in at the big boy.

Ready to go.

And they're off!

Getting off at school. The light is bright!

(photo credit: Miss Heather)

Rollin' into school like a boss! ;)

(photo credit: Miss Heather)

I want to extend our sincerest thanks to everyone who made this possible. The look of wonder on Bertrand's little face as he was lifted on to the bus was priceless. :)

Going to the 2012 Abilities Expo!

Bertrand received a surprise Christmas gift: a trip to the 2012 Abilities Expo in Atlanta, Georgia!

The Abilities Expo takes place February 17-19, 2012 at the Georgia World Congress Center and admission is FREE!

We're excited to see and try out items for Bertrand!

School Parking Spot

Remember our parking issues last year?

There are two new wheelchair accessible parking spots at Bertrand's school.

Please note the sign. :)

IEP Meeting 2011

Bertrand's Individualized Education Plan (IEP) was revised today.

He's come a long way from his first IEP last year.

These are his old "Measurable Annual Goals":

• Annual Goal 1: Bertrand will use eye gaze with an adult in the classroom to indicate turning the pages in a book or continuing a preferred activity or toy.
• Annual Goal 2: Bertrand will stay alert for 5-7 minutes during group activities.
• Annual Goal 3: Bertrand will tolerate a variety of textures and various sitting positions throughout the school day.
• Annual Goal 4: Bertrand will demonstrate anticipation of upcoming events when presented with a touch cue.
• Annual Goal 5: Bertrand will indicate a choice among two preferred items.
• Annual Goal 6: Bertrand will use a switch to activate a toy consistently within the classroom.

These are his new "Measurable Annual Goals":

• Annual Goal 1: Bertrand will sit with supervision during circle time.
• Annual Goal 2: Bertrand will improve weight bearing while at school for 2/3 opportunities
• Annual Goal 3: Bertrand will tolerate a variety of textures to participate in structured group activities and play.
• Annual Goal 4: Bertrand will stay awake/alert for 4/5 classroom activities throughout the school day.
• Annual Goal 5: Bertrand will demonstrate anticipation of upcoming events when presented with a touch or object cue.
• Annual Goal 6: Bertrand will indicate a choice among two preferred items.
• Annual Goal 7: Bertrand will use a switch to consistently activate a toy or object without adult assistance.
• Annual Goal 8: Bertrand will indicate "done" or "finished" to complete an activity 50% of the time.

These are his old "Services plus Adaptation Support":

• Special Ed. Preschool - 150 minutes 2 times/wk
• Speech Services - 30 minutes weekly
• Occupational Therapy - 30 minutes monthly
• Physical Therapy - 30 minutes monthly
• Visional Services - 30 minutes monthly

These are his new "Services plus Adaptation Support":

• Special Ed. Preschool - 600 minutes weekly
• Speech Services - 60 minutes weekly
• Occupational Therapy - 30 minutes monthly
• Physical Therapy - 30 minutes monthly
• Visional Services - 30 minutes quarterly

Spirit of the Law vs. Letter of the Law

A while back at Shriners, I high-fived a teenager wearing a t-shirt with a wheelchair symbol that said "just in it for the parking". I thought it was hilarious. After all, that kid and Bertrand are obviously NOT in it for the parking. Both would gladly give up the parking "privilege" in a heart beat (heck, make that "gladly park in the furthest possible parking spot forever") in exchange for the ability to walk!

Sadly, it appears that some people really are "just in it for the parking".

At Bertrand's school, some grandparents (with disability placards) are taking up the only 2 accessible spots--right next to the wheelchair ramp. They just sit in their cars, waiting for their able-bodied grandkids to walk to their car. Or sometimes they get out and walk (no cane, walker or wheelchair necessary) to sit under a tree and read their books. They get there early enough to take any of the first row spots, but choose to take up the only two accessible parking spots in the lot.

They've beat me there at least 6 times now.

I've had to park 3 rows back and weave Bertrand through the crowded lot, with Victoria strapped to my chest. Then leave him unattended at the back of the car, exposed to traffic because there is no room to pull him up next to our minivan while I unstrap Victoria. (Thank goodness it isn't snowing yet!)

I've wheeled Bertrand sloooowly past them--so they've seen who they are screwing over.

The principal has gone out and spoken with them.

They are still parking in the spots.

It is their "right". And, they are correct.

But, it is a blatant disregard for the spirit of the law in favor of the letter of the law.

I go out of my way to avoid parking in van accessible spots (and accessible spots period) if there is decent parking available--so it will be available for others who need the spots. I never park in accessible parking unless Bertrand is with me AND getting out of the car. It took until I was 7 months pregnant with Victoria, hauling an almost 40-pound Bertrand AND a 50-pound wheelchair before I broke down and got the disability placard. I would never, ever abuse it.

This situation with the school parking blows my mind.

That said, the school (administration, teachers and aids) have been fantastic. Everyone has been helpful and they've come up with a solution for Bertrand: his own parking spot.

It is sad that it has come to this.

Maybe some day in the future, those people who currently park and sit in the accessible spots will be so old that they actually won't be able walk anymore. They'll be wheelchair-bound, needing to get somewhere. It'll be snowing--but all the accessible spots will be taken. And then they will have to park at the far end of the parking lot.

Maybe then they'll understand.

Intensive Therapy & School Bus Follow-up

INTENSIVE THERAPY: Last Friday, Bertrand was evaluated for an intensive physical therapy program located in Provo, UT called Now I Can. By the end of his 30 minute evaluation, the therapist had Bertrand on his knees, free standing.

We were sold.

Bertrand will be starting the program on January 2 for 3 weeks, 4 hours a day, 5 days a week. (This was their soonest available opening.) We've set an ambitious goal for him: mobility. We have to strike while the iron is hot. After all, who knows how long this seizure control may last? Unfortunately, this means that Bertrand will miss the first 3 weeks of school next year, but we hope that this program will be worth it!

SCHOOL BUS: Last Thursday, Bertrand, Victoria and I took a walk down our alleyway with the mayor's office ADA coordinator, Michael Stott. Michael was very compassionate and attentive. He has asked the City's pavement manager to look at the alleyway. Now we're just waiting to hear back. My understanding is that our neighbors will have to agree to and pay for the improvement. I'm not sure that will go over well. I'll be speaking with Bertrand's teacher about some of the alternatives at our upcoming parent-teacher conference.

Can Bertrand ride the school bus?

There are so many reasons why I love Bertrand's "Dancers with Disabilities" class! Not the least of which are the people we meet there and the wealth of special needs information that gets exchanged. Below is the email I just wrote to our constituent liaison, at the encouragement of one of the volunteers in the class.

My family and I live in district 4. My 3 year-old son, Bertrand, has many disabilities and is in a push wheelchair. He attends the special education preschool program at Ensign Elementary.

Bertrand can't ride the school bus because the alleyway behind our house is unaccessible--it is far too uneven and rough. He practically got launched out of his wheelchair the time or two we have attempted it. We tried putting bigger front wheels on his chair to help with the bumps in the alleyway to no avail. (The front of our house is facing a steep hill with many steps & no ramps, so it is unaccessible as well.)

Basically, there is no access for him from the house to the sidewalk to get to the bus. So, I currently drive him into school Monday
through Thursday, but it breaks my heart that he can't ride the bus like the other kids. He would love it.

Is there a way for the city to pave the alley so Bertrand could get to his school bus? As far as I know, it is public property.

Thanks for your time and consideration!