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!

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

2011 UAAACT Conference

The 2011 UAAACT Conference, Cultivating Success with Assistive Technology, will be held at the Ogden Eccles Conference Center (2415 Washington Boulevard, Ogden UT 84401-2315) on February 9-10, 2011.

There is no fee for Utah residents to attend the conference, but registration is limited to the first 350 individuals who email, mail or fax in their registration forms.

General Conference Information Keynote Speakers Gail Van Tatenhove an SLP from Florida with more than 30 years experience, and Dave Edyburn from the University of Wisconson Milwaukee. There will be vendors and other experts on assistive technology, augmentative communication, and computer access sharing their knowledge in over 30 breakout sessions. Stay tuned for additional information on this exciting event. If you have any pressing questions please use this link to email Craig Boogaard or call him at 801-887-9533. Conference Registration We are now accepting Conference Registration. If you would like to attend the conference please register by January 18, 2011 to assure confirmation of your registration. Conference Registration Form (PDF) Conference Registration Form Conference Hotel Information If you will be staying at the Hampton Inn and Suites, please call 801-394-9400 to reserve a room at the special conference rate, $70 single, $75 double occupancy. You must reserve your hotel room by Monday, January 10, 2011 to get the conference rate. Please consider registering for the conference before you register for the hotel. UAAACT Conference Schedule The UAAACT Project is a Project of the Utah State Office of Education and the Utah State Office of Rehabilitation / Utah Center for Assistive Technology

Alternative Augmentative Communication (AAC) iPad Applications

The following are some iPad apps recommended by the Utah Center for Assistive Technology (UCAT). Bertrand will be able to test these applications through his speech therapist in the Salt Lake School District to determine the correct fit for him before purchase.

AAC Software

Proloquo2Go - $189.99

iConverse - $9.99

iCommunicate - $29.99

iPrompts - $49.99

Look2Learn - $24.99

TapSpeak Button - $0.99

TapSpeak Button for iPad - $9.99

Speakit - $1.99

DAF Assistant Legacy - $9.99

Study Skills

FlashCards Deluxe - $3.99

myHomework - free

Writing

Paper Desk LT - free

Dragon Dictation - free

Evernote - free

The Path to Assistive Technology

The Judy Ann Buffmire Rehabilitation Service Center

Bertrand's speech therapist through the Pingree Center for Autism set up a meeting at the Utah Center for Assistive Technology (UCAT) with a technology specialist there, his wonderful teacher from Pingree and his new speech therapist from his new special ed preschool. This meeting helped us lay the ground work for his assistive technology evaluation with the regional Utah Augmentative Alternative Assistive Communication and Technology (UAAACT) Team. UAAACT is a project of the Utah State Office of Education and the Utah State Office of Rehabilitation / Utah Center for Assistive Technology dedicated to improving the communication skills of students with disabilities across the state of Utah.

Matthew and I went into the meeting looking to get ideas on how to make the most out of Bertrand's iPad. We expected to get the names of appropriate apps and test drive them--which we did. But, some of the most useful information from the meeting came in the form of brain storming ways to gauge the effects of Bertrand's motor issues/movement disorder versus the effects of his cognitive abilities. And, how to capitalize on some of Bertrand's motor strengths such as spinning objects with his hands and his ability to stare pointedly at items. Bottomline, before even delving into the iPad, there are a lot of old school analog techniques which are very concrete that may set Bertrand up for immediate success.

For example, using actual objects to choose from, as opposed to using drawings or even photos of the objects in an iPad app, would be a great way to start systemetizing his communication. We do this already when having him choose between books or toys but, as one of the speech therapists pointed out, an even better test is the choice between a bottle/food and something uninteresting, like a gardening glove. This way we know the choice is actually his and not ours.

So both Daddy and Mama came away with homework from this meeting. (Daddy can have fun writing up his plans in an independent post when he isn't so swamped with work.) I am going to start off with buying a bunch of plain-colored, plastic placemats and putting a line of electrical tape down the center of each. Bertrand's will have one of these new "choosing mats" for his wheelchair, highchair, both schools, and one on every floor of our house. We'll start using the mats to present tests, choices, dichotomies... first using objects and then maybe photos, and get to know what Bertrand thinks. Give him a voice--some power. That alone could make for a much happier young man!

Miss Manners and the Mobility Scooter

An hour ago, Bertrand and I were leaving an appointment when an interesting interchange took place. We were almost to the parking deck when I noticed a lady coming up behind us. I held the door open for her and narrated quietly to Bertrand, "we're holding the door open for a lady." I don't think she heard me but she proceeded to ram the door and said, "I can get it myself!" I turned to her, looking her in the eye, and said, "I was just teaching him that ladies go first. It's never too early to start teaching kids manners."

I moved to get out of the way, but turned as she started laughing--almost hysterically. With a huge grin on her face she told me, "that's very nice!" To which I responded, "I am from the South. No son of mine will forget his manners!***" She laughed and smiled all the way to her car. Which had my mind spinning. What was so freaking funny?! Lots of moms teach their kids manners! Was it that he appeared too young because he was in a stroller? Was it because she thought it could be sexist?

After I finished loading Bertrand and everything into the car, and as I settled into the driver's seat, I watched her drive past us with her scooter on the back of her car. And that's when it hit me! It was probably because she was in a scooter!!! (Oh yeah, I forgot to mention that this lady was using a mobility scooter.) It was a weird realization to me that I DIDN'T NOTICE HER SCOOTER. I am 5 foot 10 inches tall, people. I obviously looked down at her and I must've seen it, but it didn't register. It didn't occur to me as a reason for which Bertrand and I should treat her differently than any other lady.

I could give you a full description of her face and what shirt she was wearing, but I didn't notice the scooter until she drove off. And, maybe that was it?! Our actions weren't motivated by pity. After her initial overreaction, what apparently made her day: we'd seen her as a lady rather than a scooter.

As I pulled out of the parking lot, I was thinking to myself that this was probably a sign that I've spent WAY too much time up at Shriners Hospital... and then mentally smacked myself! NO! This is a sign that I have finally spent just ENOUGH time! EVERYONE should see the lady, not the scooter.

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***Since Bertrand was born I've been gently brain-washing him in the manners and ways of the South. I figure that living in Utah is no excuse! Beyond the non-stop use of "please" and "thank you"--I thank Bertrand for everything from eating well to making peepee and always preface everything I ask of him with please--we go that extra southern step beyond. (1) We refer to all of his nurses, therapists, teachers as "Ms/Miss": Ms. Kirsten, Ms. Meghan, Ms. Michele. It is fused to their names. (2) We make sure to use "sir" and "ma'am" all the time. (No, I don't care how old you are. If you are older than Bertrand, you WILL be sired or ma'amed!) (3) Whether we are opening doors or entering/exiting elevators, ladies ALWAYS go first. Bertrand and I do not discriminate: young or old, girlie or punk, scooter or not. (4) Last but not least, we drink real sweet tea at home. :)

Just a note on the iPad and DSPD

The least blurry of the "Bertrand using iPad" photos. Look at him tap away!

The past few days have been busy with all the yard and house work that spring time always seems to bring. The list of questions for Bertrand's neurologist is set for tomorrow's appointment, which is sandwiched between preschool and hippotherapy.

But what was Bertrand up to this weekend? Playing with his new iPad, of course! Bertrand watched Elmo videos, listened to music, played baby piano, drew pictures, flipped baby flashcards, read ebooks, and played videogames (the last two with help from Mama and Dada).

The device is so sensitive that Bertrand gets instant feedback from the slightest glance of his fingers--this ensures that he is fascinated by it! The iPad seems to have given Bertrand a new awareness of what his hands are capable of, and he has since been caught touching his own feet and playing with his Mama's hair!

We're looking into a picture communication program (either purchased or custom programed) for the iPad as well.

One sour note this weekend was receiving notice that Bertrand had been denied a spot on the waiting list for services by the Utah Division of Services for People with Disabilities (DSPD). Mind you, this waiting list is 4 to 7 years long, but for Bertrand to be denied a spot on the list was the ultimate in stupidity. I plan on appealing the decision and, if that doesn't work, seeking assistance from the Disability Law Center, the Protection and Advocacy agency for the state of Utah.

Genetics, assistive technology & May travel

This morning, Dr. Vandana Shashi, the geneticist from Duke University, called me. She, being the amazing doctor that she is, presented Bertrand's case to the entire genetics section at Duke! She was able to use the video that Dr. Eddie Smith (neurology) took to showcase Bertrand's movements and features. They are still befuddled but, as a team, they came up with some other tests they'd like to have run for Bertrand's spinal tap next Monday. Here is the email she wrote to Dr. Longo aftee speaking with me.

Dear Dr. Longo,
I am the medical geneticist who saw Bertrand Might last week. Your note on him was very helpful. As you know, it has been a challenge to find a unifying diagnosis for his features despite so many people thinking about him. I hope you don't mind me doing this, but I have a list of tests below that may be helpful. We have met here as a group after evaluating Bertrand and had some suggestions for further testing. Some of these can be done in a stepwise fashion, if the ones pending now are negative, but as you may agree, for CSF studies it would make sense to do all at the same time. I have listed the suggestions below, with the understanding that you may have thought of these already.

1. CSF studies- in addition to the neurotransmitters, get amino acids (simultaneous plasma AA), glucose (plasma as well), lactate.
2. Skin biopsy- send out for mitochondrial panel (Baylor)
3. DNA for Batten's disease (NCL)
4. Blood for mass spectrometry for the carbohydrate deficient glycoprotein disorders (Greenwood)
5. Urine creatine
6. MECP2 sequencing if microarray is normal
7. Urine polyol
8. Chromosome breakage studies

His mother told me that Allgrove syndrome and Menkes are being considered as well.
Please let me know if I can do anything else.

This afternoon, Bertrand and I went to The Utah Center for Assistive Technology (UCAT). At UCAT, Bertrand was evaluated by Scott. We tried a bunch of switches, switch adapted toys, and other goodies. Bertrand was not in the most receptive mood (he was pooping), so we'll try to go back sometime next week with Matthew. This is really Matthew's area. A lot of the programs and toys are so simple, it may be cheaper (and more fun) to rig things ourselves.

In our very first apartment, over 6 years ago, Matthew used X-10 to wire everything from the lights to the tv, stereo, coffee pot... you name it. We could turn it all on or off remotely--via web. At the time, I rolled my eyes. Now, we have to do it again, but for Bertrand, so the project will include placing mounted wireless switches in his crib, play areas, and eventually his gait trainer. I think Bertrand's daddy, grandfathers and uncles will have a blast with this!

At UCAT, I was fortunate enough to find out from Scott that there is a new cyber Pre-K in Utah! I gave him my email so I could get more information. I just love the cyber school concept. I'd been introduced to K12 before, and think it'd be a perfect fit for a special needs child like B. Since they have open enrollment here, I am going to see about putting him on the waiting list now, so, if he makes it to age 3, he could attend the cyber Pre-K.

Lastly, I finalized some of the dates we'd be visiting our family in Georgia. We'll be in the peach state from May 7 through the 17th to attend Bertrand's Uncle Booj's commissioning ceremony. Mother's Day will be spent at St. George Village with B's great grandparents, Bud and Rosina. We'll also be spending some time in the Blairsville area riding trains and playing with friends and cousins on Lake Nottley. Maybe we'll even swing by Augusta--who knows? :)