Kintropy In Action

To say I enjoy and collect music is an understatement.  I worked in music retail for over 13 years, amassing a collection of vinyl and compact discs bound by Beatles, Bowie, and many, many bands of the 80s.  Music has been a constant throughout my life.  It has always been there for me:  no matter what else was going on.

So you can imagine my celebration of my kids' musical awakening.  In Hannah's case, it's been clear from Day One that she is destined to lead a band someday.  She's got the 'doo and the 'tude, and she knows no fear.

I wasn't sure that Gabriel would follow her example.  He's had a more casual relationship with music to date.  Music has competed with tv and video games and, often, lost his interest in comparison.

Two nights ago, I cruised by Gabriel's room.  I had just gotten him his new mp3 player, and he had set it to play him to sleep.  Of course, when I walked by, he wasn't sleeping.  He was dancing around his room, singing in his loudest voice:  "So let me introduce to you!  The act you've known all these years!  Sgt. Peppers' Lonely Hearts Club Band!"

I was thrilled.  The following night (last night), Gabriel and I gave Hannah an improptu concert in the family room, plugging in his player and singing along to Gabriel's current favorites ("While My Guitar Gently Weeps", "Is There Something I Should Know", and "Hungry Like the Wolf").  Hannah was thrilled.  She clapped.  She danced.  She stared eagerly at my mouth between sets.

It's nice to see both my kids embracing music, particularly my music.  I know that it won't last forever.  One day, they will come home with a music that is too loud, too dissonant, too - something.  For now, though, I'm going to kick back and enjoy the moment.  And maybe dig something new-to-the-kids out of my vinyl collection.

-- Dad 

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This Saturday, Robert and I attended the All-Born In Conference.  Its emphasis was working with schools to include all children in all classrooms.

I must admit that I was giddy that Robert and I got a whole day to go out alone together.  We kept discussing our game plan to ensure we both kept focused on attending the conference (and not sneaking out to our favorite book store).

The beginning keynote speakers, Norman Kunc and Emma Van der Klift, were hilarious,  The other thing I liked about them is that one of the main themes of his Norm's speech, Being Realistic Isn't Realistic, was about how most people are hampered by perception.  He reminded us all to aspire to think like Houdini.  He was constantly pushing to do things instead of focusing on why he couldn't.

It was great to hear someone talking about what Robert and I talk about everyday.  We usually approach problems from the perspective of:  we would like to do this.  How will we make this happen?  

For example, I want Hannah to be able to ride bikes with the other kids on the block.  There is a 600.00 bike we are looking into.  In the meantime, I take her out in her wheelchair and push her around.  I've also modifying a low-rider trike with seat belts, feet straps and a pole to push her in it.  Somehow, someway, we'll all ride bikes together.  We just have to be creative and figure out a way to make it happen.

 -- Mom

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Today, I was trying to get our family areas clean.  I'm not the best housekeeper especially when my kids ask me to stop and play with them.  But, for over a month I had been planning on hosting a Usborne Book party tonight.  With Hannah and Robert getting sick and me joining in the mucous fun,  my cleaning plans flew out the window.

So my gracious in-laws came to play with the kids and lend a hand with the cleaning.  Gabriel loved the attention so he pulled out his Star Wars Clone Trooper costume.  Then he carried around his little plastic bright green handgun from his police costume set.  I found it's hoister while cleaning the paper piles around the kitchen.  He wanted to wear it.  So I belted it on over the costume.  Later we put his star of David necklace on around his neck.  It was a pretty picture.

He later gave me a smile when I looked up and found him still completely costumed holding his baby doll and feeding it a bottle.

Unfortunately, my camera went through the wash and is not working so you will just have to use your imagination and speculate on how a camera ended up in the wash.

--Mom

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2 am:  nursing shift switch between Mom and Dad 

10pm + 4.5 hours = 2:30 am:  time for Gabriel to sleepwalk into Hannah's room and cuddle with Dad (going back to sleep, but...)

9pm + 6 hours = 3 am:  time for Hannah to wake up and demand entertainment from Dad.  Gabriel wakes, too.  Something fun might happen.

3 am + 0 hours =>  check tubes, change diaper, and briefly entertain 

3 am + .5 hours => everyone to their beds (sleep second shift - eventually)

all hours + all hours =>  coffee time for Daddy.  Always coffee time.

-- Dad 

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I originally wrote the following response as a please-publish commentary for The Oregonian.  It was not published, but, hey, that's the advantage of having a blog, right?

The context was that The Oregonian had published a series of articles and letters regarding public school drop-out rates and special education.  The letter that really drove me nuts came from a fomer special-education assistant who had the following to say (Oregonian, Friday, April 11):

"When I became Tigard School District's first special education assistant in 1979, I worked in a program that was a huge success. We taught the kids with a program that put mainstreamed students in regular classes with modified work from the special education teacher (other students didn't have to know) and those who needed it were in contained special classes, except for physical education and electives.

We taught them to ride the bus, cook and [perform] other living skills. Those with emotional problems had special coping-skills classes. We had special math, English, science and social studies classes at levels students excelled at.

We didn't have any severely handicapped students who were there merely for socialization.

By the time I retired in 2000, we had "mainstreaming" and an overload of students being integrated merely for social time. This took time from those who were able to learn.

Severely disabled students who should be in a specialized environment created to teach them skills they need are now in public schools where they languish.

The federal law giving them the right to a "free and appropriate" education has harmed, not helped, all special education students. It is time to rethink the system.

DONNA NESBITT Tigard"

Here was my response:

Special education isn’t a place.  It is a set of services that support a child’s academic learning and self-empowerment.  I should know.  I am a former special education student.

My parents had chosen this school to support my older brother who was born with spina bifdia and a cognitive disability, but when I was evaluated, I, too, earned special education services.  A string-the-beads fine motor skills test was my ticket to adaptive physical education.  It capped a long string of observations my parents, one of whom was a special education teacher, had made about my sensitivity to touch, speech delays, and motor skills:  I had an (albeit undiagnosed) disability.

My IEP, however, didn’t constrain me to a self-contained classroom; it provided me with individualized supports.  For speech, I spent a little time working with a speech therapist.  For exercise, I left my homeroom classmates and joined my friends in adaptive physical education.  For reading, I moved to my older sister’s classroom.  That’s right:  by kindergarten, I was devouring books well above my grade level.  My IEP comprehended both my disabilities and my strengths and placed me accordingly.

I was not a burden on the system; neither were my classmates.  We supported each other.  I remember learning the art of conversation from Vince.  He typed into the keypad attached to his wheelchair’s arm; it spit out a ticker-tape like message.  I had to wait patiently for my turn to speak.  I would read his message aloud and respond.  He would smile, maybe vocalize, and start typing again.  We conversed.  We were equals. 

It amazes me that much of what we had right in the 1970s is still being debated, and in some cases discarded, here in 2008.  The fundamental guarantee of a free and public education carries an Animal Farm-like asterisk that some kids are more equal than others.

To me, this segregation of children is unacceptable.  In addition to all my personal history, my four-year-old daughter, Hannah, was born with a cognitive disability.  We had an opportunity to place Hannah in a self-contained preschool thirty minutes away.  We passed.  Instead, we worked with our IFSP team and our local preschool to lay a path for Hannah’s inclusion with her peers and her community.

Who knows what the future holds for my daughter, Hannah?  All I know is that the system I benefited from in the 1970s, where each student was “special” and supported according to his strengths and needs, had it right.  That is the map I am using to navigate the special education maze with my daughter.  Through it, I look forward to helping her employ her free and public academic education to discover and develop her strengths.

***

-- Dad 

Posted by Dad at 01:51 AM | Permalink | Comments (3) | TrackBacks (0)

A reminder for all planning to attend the All-Born In Conference:  it takes place this coming Saturday, April 26th here in Portland, OR.  You can read more about Janette's and my experience with the conference in prior years here and here (2007).  We recommend it highly.  If you want to gather school and community inclusion tips and tools, network with other parents and families, get motivated, then this is a great event to attend.

Over at the NWDSA website, you can:

• Register

• View topic abstracts and speaker profiles

My bronchitis seems to be retreating, so both Janette and I still plan to attend together.  If you recognize us from the blog pictures, give us a shout!

-- Dad 

Posted by Dad at 02:32 AM | Permalink | Comments (1) | TrackBacks (0)

Freeing my mind from rehashing the inane ABC debate, I went on a policy search tonight.  My targets:  special education and, indirectly, policy principles regarding people that experience disabilities.  My grandfather, my older brother, my daughter, and I all have multiple disabilities:  kind of a four-generation tradition.  Given that tradition, this policy-focused research seemed like a good place to shake off the non-issue mass media barrage of the last few weeks.

After searching each candidate’s website for disability-oriented content, principles, experience, and policy, in my opinion, Senator Obama wins, hands-down.  Here are my overviews by candidate:

“We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities. - Barack Obama

If you want a fantastic counterargument to those that still argue “vague on policy” or “lacks experience,” browse on over to Obama's disability topic page.  It includes a:

• Disability Plan - policy principles and legislative specifics across a range of issues including special education, employment, human rights, community inclusion, and health care.

• Autism Spectrum Disorder plan

• Transcript from a Disabilities Policy Committee conference call.  The Committee appears to be an outreach and policy development group Obama’s team is spearheading around disability topics.

If you are a more visual person, take a look at Obama’s introductory video on his disability positions (subtitled for universal accessibility, of course).

Overall, Obama highlights a substantive set of disability policy positions, personal and professional experience, and an inclusive approach to soliciting and synthesizing feedback from the greater community.  I would add and tweak a few positions (like emphasizing the “least restrictive environment” requirements in education), but I eagerly endorse many of his well-thought and well-laid-out positions.

Hillary Clinton

“The United States will only reach its economic potential if it ensures that people with disabilities have the full opportunity to reach their potential. Americans with disabilities have half the employment rate and double the poverty rate of individuals who do not have disabilities. - Hillary Clinton"

Hillary Clinton also lays out policy positions on her website:  several in great detail.  Her disability-specific positions were difficult for me to find initially, though.  I had to choose a main topic like “Supporting Parents and Caring for Children”, then navigate to a sub-topic list in the right margin (a tip I got, by the way, from Obama's Disabilities Policy Committee conference call facilitator).  Here are several that I located:

• Expanding Opportunities for Individuals with Disabilities

• Improving Health Care for Americas with Disabilities

Some of Clinton’s policy recommendations are similar to Obama’s, but the set I found are not nearly as comprehensive.  For example, under the topic “Improving Our Schools,” Clinton mentions some prior experience in disability advocacy and policy development, but only addresses fully funding IDEA in her main bullet points on the page.  I expected to find more detailed policy ideas under the sub-topic “Giving Every Child a Chance,” but found none there.

Good content (when I could find it), but Barack Obama’s site organized it all under one major “Disability” topic, explored issues more thoroughly, and just did a better job of winning me over on multiple positions.

John McCain

Unfortunately, John McCain’s site was the easiest to review.  I found no content searching on “disability”, “special needs” (my least favorite expression, BTW), and “special education.”  Might be there, but I couldn’t locate it. 

Interesting considering that Cindy McCain received her Master’s in Special Education according to USA Today.

***

In the end, given my family’s experience with disabilities and my own advocacy, Barack Obama earns my vote on this issue.  He had a consolidated disability section to explore, and his site was full of many disability policy positions I would find it easy to support. 

-- Dad

Note:  I originally posted this at Daily Kos:  my first post there as a "diary."  For those that know us here from our kintropy family stories, I thought the links would also be useful.  You all know our family was previously split on which candidate to support (Gabriel & I were Obama-supporters; Mom and Hannah, Hillary), but I think we've moved Mom to Obama; Hannah, I'm not sure.  Given what I found above about disability policy, I think we might be able to sway Hannah, too, now ;-) 

Posted by Dad at 02:38 PM | Permalink | Comments (0) | TrackBacks (0)

Mommy is headed out for a much needed break as I write.  Target.  Walgreens.  A wild hour-and-a-half of bachelorette consumerism!  Yeah, ok, not so wild, but she's had a hard two weeks.

First, there were Hannah's appointments.  The outcomes were great (heart fixed, planning to remove the trach in May), but the multiple trips across multiple days have been exhausting.

Then I got sick.  Not cough, cough, go lie down sick.  I'm talking Cameron, Ferris' friend, sick.  I *wish* I could cough out my lung - might feel better.  I've burned through three sick days this week alone - yuck.  The doctor thinks it's probably bronchitis; I think Hannah and I are sharing her special-exotic-germs (psudeomonus is my guess).

Yes, she's sick now, too.  Goopy, goopy, goopy.  She's doing much better than me, to be honest.  I'm laying here typing, resting on a moist heating pad, running neb treatments on myself every 2-3 hours.  She, on the other hand, is clapping to the music on t.v..

Hopefully, Hannah gets the easy course.  In the meantime, Gabriel is getting a little bark to his cough....

So, if you happen to be local, don't ignore the crossed woodplanks and "Plague House" signs on the door.  Check in with the ever-patient nurse-Mom before entering to make sure the coast is clear!

-- Dad (hack, hack - pity party - hack, hack) 

Posted by Dad at 08:33 PM | Permalink | Comments (2) | TrackBacks (0)

During the winter months I avoid taking Hannah to the hospital. Her trach allows for to easy access to her body for way-word germs. So this includes going to the specialists offices since their offices are in the same building as the hospital. They share air-ducts with the hospital.

So the past month has been a voyage of specialists catch up.

We have seen her Cardiologist (Heart Doctor), Pulmonologist (Lung Doctor), Gastroenterologist (Stomach Doctor), Orthopedist (Bone Surgeon), and Optomologists (Eye Doctor). So there has been a great deal of good news and some new projects to work on. I already have wrote that the hole in her heart has closed up and she no longer needs a Cardiologist. The Pulmonologist is optimistic that this may be the year her trach comes out. Her regular Gastroenterologist has passed away. So we had to meet a partner. The Orthopedist confirmed the scoliosis going on her in her back and she will need a brace and eventual surgery. The eye doctor said the astigmatism is still there and we need to get her glasses.

We still need to see the ENT (Ear, Nose and Throat Surgeon) and a Dentist.

Through the appointments the kids have been doing great but, I have been exhausted fighting a staff infection Hannah decided to share with me several months ago.

So I am in a state of flux and requiring more video game downtime for mental floss.

Mom

Posted by parents at 10:00 PM | Permalink | Comments (0) | TrackBacks (0)

Just wanted to encourage everyone to visit the current edition of Disability Blog Carnival over at Jodi's Reimer Reason.  Jodi has assembled a good, varied collection of blogs around the theme of The Hardest Part.

-- Dad 

Posted by Dad at 02:40 AM | Permalink | Comments (0) | TrackBacks (0)

Photo booths are small, especially with an active four-year-old in your arms.  They've changed some (the booths, that is), modernized, since my old Balboa Fun Zone days.  You can pick layouts, color, sepia, or black and white; you can also pay via debit card:  so convenient to spend $3.

Hannah and I stepped into this particular booth Sunday:  our daddy-daughter day out.  We had enjoyed lunch together at New Seasons, browsed Powell's Books, and explored the mall for a few minutes.  For years, when Gabriel was younger, he and I made regular journeys, both to satisfy my wanderlust and give Mom a break.  Now Hannah and I were renewing the same tradition.

Hannah, happy to be momentarily free of her wheelchair, sat in my lap and took a look around.  As I paid and chose options, the booth light came on, pulling Hannah's curiosity upward.

The booth counted down to taking its first shot.  Afterward, Hannah quickly shifted.  She looked at me expectantly.  I wasn't singing.  Singing is required.

Second picture.

Hannah likes an unobstructed view of my face:  the better to claw at my mouth, making it clear that it needed to move back and forth to produce music.  She snatched away my glasses.

Third picture.

Got the glasses.  What's the ceiling look like?

Fourth picture.

We stepped outside and waited for our pictures to print.  A minute later, we had our memory.  Wanted:  picture perfect day out (and some singing, please).

-- Dad 

Posted by Dad at 06:59 PM | Permalink | Comments (4) | TrackBacks (0)

"'L 'un!"

We were finishing up dinner.  Gabriel sat to my right, protecting his carrots from Hannah's increasingly good reach.  Janette and I were busy translating Hannah-speech.

"All done, Hannah?"

"'L 'un, m'ah-ah," Hannah confirmed.

"She said, 'All done, mama!'," I repeated.  "All done, mama?"

"'L 'un, 'L 'un."

Janette complimented Hannah on communicating well and began transferring Hannah from wheelchair to floor.

Hannah clapped.  "Aye."

Hannah was now sitting on the floor.  Like a game of charades, Gabriel and I believed we had solved the puzzle, repeating back to Hannah, "All done, Mama. Bye!"

Hannah grinned broadly and shouted, "Yeah!"

In other words:  yeah, you understood me!  Good job, family!

As a parent, I belatedly celebrate my kids' every success; I am always 1-2 steps behind them.  Letting go of the prior achievements, the prior stage, the prior understanding is the hardest part.

With Hannah, I'm still stuck in trach management mentality, waiting for the next hiccup, the next emergency room admittance, the new diagnosis.  Meanwhile, back at the Ranch, Hannah is developing language and communication skills with the clear intent of manipulating we subjects who serve her.

She is growing, and I am slowly switching gears to catch up.  Hannah is spending more time with her peers at preschool.  Preschool provides her a smorgesboard of tips and tricks to employ at home.  I, however, am fighting the last battle for Hannah (medical complications) and preparing to fight the next alongside her, whatever that may be.

Even early this morning, as I write at 4am, Hannah and I are sizing each other up.  This time it's reversed.  I am ready to give Hannah some alone-time in her room.  Time to process.  Time to think.  Time to settle down.  Time to get back to sleep.

She is not.  For four years, she has had 24/7 in-room support.  The ventilator, trach, and feeding equipment and needs required it.  Today, we are graduating to just trach and feeding support.  In a few months, it may be just feeding support.  Correspondingly and appropriately, our nursing hours are being cut back.  Hannah needs to develop a new skill and understanding:  alone-time and privacy are good things.

I am writing from our adjacent office:  a perfect position for listening and watching for any medical needs, but just far enough out of her line-of-sight to give Hannah some space.  She is having none of it, of course.  She is tossing and turning, crying, trying to get her pulseox to speak for her and call me back into the room.

And I do go back in to check on her.  If everything is medically ok, she gets a brief arm hug (which she clings lovingly to), a reminder that I am in the next room, and a stern warning that it... is time...to go... TO SLEEP!

Letting go - of prior conceptions for both of us (and of my arm, for one of us) - is the hardest part.  Ultimately, it makes us all stronger, but it's hard to recognize that because you're already past that milestone marker and trying to catch up to the next.

Posted by Dad at 04:39 AM | Permalink | Comments (5) | TrackBacks (0)

This morning I got up early and packed a bag of stuff for amusement and caught a ride with my father in-law to the county court house.

This was my first time of doing my social obligation of Jury duty. Most people seem to groan at the prospect of serving on a jury. I was excited. I get to sit in a room with adults and read a book, draw a picture or even work on some writing without any other responsibilities. Total heaven in my world.

There were some unexpected things. Such as even though the room was big it felt cramped due to the number of people in it. As it filled up I moved to a little balcony in the back with tables to help me with personnel space. The anxious air of everyone around me made it hard for me to read.

So I pulled out the AlphaSmart 3000 Robert got for me and started transcribing a novel onto it. Being so close to other people and not talking to them drove me crazy so I started engaging in conversations.

It never failed. After I engaged someone in a conversation they were called for the next pool of jurors.

The morning wore on, and the room looked to be down to about twelve to fifteen of us.

My number was finally called third to last and we were all excused to go to lunch till 1:15.

That actually gave me two and a-half hours for lunch. Cool I got to wonder around downtown.

I knew I wanted to go to the tea house by the courthouse. It is called The Stratford House. It has the most amazing Hungarian mushroom soup. But I thought it was still early, so I headed to the new gaming shop Avatar’s Lair.

There are two new card games I’m curious about. Truthfully, I just want to play Magic, but I’m on a quest to find a fantasy card game to play with Gabriel.

So I bought Kingdom Hearts. Besides I had to see Mickey and Donald in a warrior role. I realized I still had two hours, so I looked at the store clerk who knew nothing about the game and asked if he wanted to read up on it, and we could try it out. He jumped at the opportunity to learn a new game without the cost to the store and give his opinion.

Well the game has potential and still needs work.

I went to the teahouse and now I’m waiting for the summons to the courtroom.

And then I was excused at around 2:30. I had a fun day

--Mom

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