Open Letter

This post has a lofty goal; well actually two.  First, this will be a joint effort from both Cheryl and I.  It is my intention to finish this writing sesson without bruises; she may crown me for my inability to work well with others.

Ryan graduates from high school next week; a milestone for any child, but for our family --- this is big.  There was a time that we thought that this event … No, wait.  Who are we kidding?  In the early days we couldn’t even dream of this event.   As parents we all look at our little newborn and we can “see” ahead to their first day of school, or holding the T-ball bat, or headed for a sleepover with friends, or going on their first date, or scoring a touchdown at Homecoming, or even standing proud in their cap and gown.  Nope.  We “saw” none of those things.  We saw only a fog.  A future of blurrr.  A world of WonderWhat’s and WhatIf’s.   We couldn’t see past our days of portable heart monitors, cardiology, audiology, pediatricians, and early intervention. And so we prayed. We prayed to the Heavenly Father for strength, guidance, and wisdom.  And he delivered. He sent his hands, his feet, and his heart to us in the form of family, friends, and helpers.

And so we write this “letter” as a tribute to the people who have helped Ryan along the way. Our second goal is to not leave anyone out.  If you are one of the people that has blessed Ryan AND we leave you out; well… I have decided that it is probably Cheryl’s fault.  Here goes;

To Betty and the folks at the Early Intervention Program,

We met you before Ryan was born. You held our hands through Ryan’s first three years; from the tongue/mouth exercises at the age of four weeks to the group sessions at three years old.  Wow!  You even had model students. (a typical student in the classroom --- our first glimpse at the value of peers)  You changed so many of Ryan’s  “cant’s” into “can’s”, and you more than anyone else moved us from scared and overwhelmed to determined and committed.  Ryan is who he is now because of you.  Thank you. 

  

To our family,

Oh my.  You have been such a blessing.  Whether Ryan is your grandson, your nephew, or your cousin; you have made him feel loved and welcome.  You did that from the beginning.  You did it without hesitation.  We have never taken that fact for granted.   What is so amazing is that you have seen us at our best and our worst (the built-in nature of families) and NOTHING CHANGED!  Your love for us and your gracious sense of welcome has never wavered.  You acted as baby sitter when no one else would.  You included Ryan in everything; every outing, every vacation, every Super Cousin Day, every holiday.  You were the first to nurture Ryan’s deep desire for relationship; we credit that to you. Ryan is who he is now because of you.  Thanks, thanks, thanks.

To Ryan’s big brother and sister,

Every time I start to type this one, I cloud up and can’t see the keebord. I will come back to this one later.

To Ryan’s 5^th grade school psychologist,

You guided us through the testing gauntlet as we moved into a new school system.  You were the one that said, “Ryan will have problems functioning as an adult”.  Thanks for pissing us off.  Because of you we sought wiser council and moved (again) to get Ryan in a different school. We would invite you to his commencement if we had cared to remember your name.  Ryan is who he is now in spite of you.  Thanks.

To Ryan’s “buddies” at church,

You know who you are.  We sure do.  You have been a constant in our lives for so long.  We won’t ever forget the day when Laurie walked up to Ryan in the foyer and said, “I’d like to meet you, young man”.  And the buddies became so.  Ryan’s Sunday is not complete if he doesn’t see his buddies during worship, grab a ride with one of you, and go to lunch together.  You make Ryan’s birthdays special, you celebrate each of his milestones, and you encourage him like few others. When we first moved to town and connections were few, you stepped forward and became our family. Your wise council and hand of friendship has made all the difference.  Ryan is who he is now because of you.  Thank you so much.

To our church community group,

You get us. You have dreamed, and cried, and prayed with us at all the right times.  You poured yourself into Cheryl and I when we needed filling. You are the body of Christ. You made Ryan feel like an adult even when it wasn’t so. You made him your friend. Ryan is who he is now because of you.  We love you for it.

To the student ministry leaders and students,

We have no idea what you had to do behind the scenes to include Ryan, but it worked!  Wheels, you have got to know that when you said (so many times!), “we got him”, we believed you.  That is who you are.  Lance, my favorite “fisher of men”, what seemed so commonplace for you was monumental for us--- when you said, “me and the guys have talked about it, we want Ryan in our group”.  You and that group brought Ryan to Christ.  You know that don’t you?  We do. Mark & Crew, your team hosted Ryan’s first weekend retreat; like it was nothing.  It wasn’t.  And to Ryan’s student friends; your friendship is real. That matters.  Ryan is who he is now because of you. Thank you.

To our disc golf friends,

Oh, how Ryan loves disc golf. Not because his daddy does, but because of you.  From the early years in the Ham and the Big D to the WC crew today; you have never, ever, ever made Ryan feel unwelcome.  Quite the contrary; you have gone out of your way to engage and involve him in all we do. You have helped him navigate the courses, you have waited patiently for him to catch up, you have waited patiently for him to catch up, you have waited patiently for him to catch up (sorry, I may have mentioned that already), and you have taught him to play like a gentleman.  And foremost; you have always treated him with respect.  You have given him a love for a sport that will last a lifetime.  Ryan is who he is now because of you. And don’t you ever forget it. 

To Ryan’s teachers and principals,

You saw our vision of inclusion and made it happen. When we said, “We want Ryan to have a typical middle school/high school experience”, you somehow understood.  You became an army of advocates for Ryan.  And what an army it was; principals who truly listened and deeply cared, teachers who concentrated on Ryan’s strengths and sought unique ways to teach him, teacher’s assistants who lovingly guided Ryan past his daily bumps, and file holders who worked magic.   Now don’t feel bad if you don’t know what a “file holder” is; they had to explain it to us, too.  The file holder is that Special Education Resource teacher/maestro that orchestrates the elusive notion called inclusion.  Ryan’s file holders (each and every one of them) were a force to be reckoned with.  They turned roadblocks into rubble; all for Ryan. When he wanted to be on the track team you scheduled TA’s to get him to the practice field, when he needed to improve his reading you found him a home on the media team with “Pittman on Sports”, when he ran out of easily modified sciences you made history my adding an IEP student to the Honors Anatomy class.  We are indebted to every one of you.  Ryan is who he is now because of you. You rock! 

To Ryan’s friends at school,

You may not realize what your friendship means to Ryan.  You chose to look beyond the things that make him different and embrace him for who he is. And in doing so; you have shown maturity and character beyond belief.  Your example has taken Ryan to a higher place; he has learned how to be a friend because of you. As parents we are all too familiar with kids not unlike Ryan who are tolerated during the school day and left totally out of the extra-c stuff.  But, not so with Ryan; because of you he is a dedicated member of the track team, a committed JROTC cadet, an appreciated wrestling team manager, a media news team regular, and of course the shortest prom king ever. Whether Ryan is sweet talking the ladies in the hall, eating lunch with his friends, or hanging with the gang at the ballgames; he knows that he BELONGS. Ryan is who he is now because of you.  We will be forever grateful for the love and compassion you have shown to our son.

  

To Ryan’s big brother and sister,

You missed out on so much. When Ryan hit the scene, your life changed as much as ours.  As parents our attention see-sawed hard and fast in Ryan’s direction.  Such was life, especially in the early years. And you gave us a pass.  Not that we asked, not really. In those early years we didn’t know how to ask.  But, somehow it was as if you had answered, “it’s ok Mom and Dad, it’s ok”.   That was when you first became our Heroes.  Brent, you are such a caring big brother. You took Ryan with you every chance you got.  You know he worships you, don’t you?  Never in the history of brothers has anyone tried harder to be like their big brother. Meagan, you grew up so fast.  You had to. You stepped in when we were tired and overwhelmed. You have always brought out the best in Ryan.  To this day; just the mention of your name helps him stand a little taller and to make better decisions.  The RyanGrin is never brighter than when he is thinking of you; he so cherishes your love.  And by God’s grace each of you married an angel.  Just ask Ryan about his brothers and sisters --- the number has changed since you two became a part of our family; “I have two brothers and two sisters”, he says.  God knew that we needed each of you for Ryan to become the Ryan he was supposed to be.  Ryan is who is now because of you.  We love you so, so much.

With love,

Ron and Cheryl

Guest Speaker

Nine years ago an area Christian school began a wonderful event; each spring they would invite the special needs high schoolers from the county for a fun-filled field day.  They called it CIA Day. (Christians in Action)  This year Ryan and I were invited to be special guests for the day and to be guest speakers.  We said, “Yes” immediately.  I’m through typing. Watch the video.


Part I
http://vimeo.com/24073047

Part II
http://vimeo.com/23779870

The Roller Coaster

We are approaching the 11^th hour.  Ryan graduates this month and we have yet to nail down an appropriate job for Ryan.  If you missed the January 20^th posts – I will explain;  Ryan is going to work full time for a year, live at home in his “apartment”, and apply for the Vanderbilt Next Step College Experience program for the fall of 2012.  We hope to have a job in place this July when we return from our mission trip to Peru.  But, we don’t have it yet.  But, not for a lack of trying…

Up

In January I scheduled a visit to the local food bank. (4^th largest in the nation BTW.) I was on a sales call. I was selling the idea that they partner with Americorps, apply for funding for two or three full time interns, and consider Ryan as one of those interns. Closed that sell, baby.  They loved the idea.  Americorps was on their to-do list anyway and they had a solid track record of inclusion in their volunteer force.  It looked like a done deal.

Down

I offered to call the state liaison for Americorps on behalf of the food bank.  Maybe there was something I could do to streamline their application.  Not a good phone call.  First, I discovered that we had missed the deadline date by a week.  The food bank would not be able to create a partnership until 2012. My disdain for bureaucracy did battle with the need to find a Plan B; thankfully the latter won.  Through my teeth I asked, “Are there any current non-profits with Americorps interns who might be interested in adding an inclusive component?” (That’s bureau-speak for making a place for a special needs intern.)  He reminded me of an option we had looked at last year, it was a poor choice last year – and still is.   “More?”, I asked.  But, sadly no.  He closed the conversation with the mention of a nationally funded program or two.  I made some notes and hung up.

Up

The www is cool.  I went to the Americorps website, launched a search for Tennessee-based nationally funded programs and found the non-profit my liaison friend had mentioned.  Another sales call. The director was easy to talk to and genuinely interested in “adding an inclusive component”.  I told him about Ryan; his school, his work at Olive Garden, and his many activities and Director Will was on board.  He said that applications for summer of 2011 are submitted in April. I told him to be watching for Ryan’s application.  He shot back with, “I will email you so you won’t forget it”.  Score!

Down

The Republican budget proposal wiped Americorps off the map.  I don’t know if you are red or if you are blue, but posturing and politics often make bad policy. Beltway games.

Up

We applied and set up an interview anyway. Americorps survived with a 6% cut.  It still seemed do-able.  Ryan was nervous, oh so nervous in the interview, but it didn’t seem to throw the director.  He was still on board.  Sure, he would need to run it by his CEO, but we left more than hopeful.

Down

We got the phone call last week. Ryan didn’t get the job.  Remember the budget cuts?  This particular non-profit was hugely affected.  Instead of hiring their normal ten interns they would have to settle for only seven for 2011. There just wasn’t room for Ryan.  

And down

We asked a couple of local businesses if we could sit down with their HR department and talk about hiring Ryan. “We aren’t set up to hire special needs employees,” was the response.  I confess; I have yet to figure out how to handle that type of answer.  As parents of a special needs child our radar goes off at the slightest thing.  I hear a “ping” inside my head, I identify the offending barrier, and launch my attack.  And so I shot back.  You don’t want to know the details. I suspect that I burned at least one bridge.  I should have said with a laugh, “aww, you know… not many folks are (set up to hire special needs employees),  what I was hoping to do was talk to someone about how other companies have done so with great success.” Yep, that’s what I should have said.

So, once again we are looking for a local company that would be interested in hiring Ryan full time.  Cheryl said that we may not be looking for a where, but a who; someone who thinks this is an idea worth exploring.  We aren’t looking for his Forever Job, just something entry-level for the next year. Don’t be bashful.  If you have an idea, let us know.

Wonder What He Will Say?

Part One

Let’s do the math. I started playing disc golf on a regular basis when Ryan was only four years old.  He is now 19 years old, so hmm… he has been hanging out with his dad on the disc golf course for almost 15 years.  For the un-initiated --- disc golf (Frisbee golf, if you will) is played like ball golf, but instead counting how many times you hit the ball with the club, you count how many  times you throw the disc on its way to the hole (a basket-looking gizmo). 

Ryan would beg to go with me to play.  And “play” he did.  He would play with the sticks, the rocks, the water, and only occasionally he would actually join us on the tee box and throw his disc.  But, he loved the relationships.  “Dad? Going to play with the guys?” he would ask.  Why our friends put up with him slow-walking and tolerated me hollering, “Ryan, catch up” for all those years ---- I will never know.  But, they did. True friends indeed.

As the years progressed, so did Ryan’s love for disc golf.  Ryan’s challenges with timing, muscle tone, balance, and coordination had resulted in very few successful athletic ventures. But, not disc golf.  Ryan learned to throw; maybe not far, but certainly straight.  His skills grew, too. He paid close attention as I would instruct a group of scouts at a clinic and the following week he becomes the teacher as he shows his friends the proper way to grip a disc.  He started learning the rules; how to mark a lie, how to hold a proper stance, and how to be quiet while others are throwing.  He didn’t miss much.

Ryan began to join me as I played in the area tournaments.  The other players (and the tournament director) would always make us feel welcome as Ryan hung out with me.  They would even let him throw a time or two each hole -- just so he stayed out of the way.  And then last summer, my little disc golf tadpole became a frog.  He played with me at a local tournament, but this time he didn’t just throw once or twice each hole; he actually threw every shot and asked to keep his score.   And the men we were playing with were kind enough to slow down and let him do it.  Wow.

In August we traveled to Louisville, KY for a weekend tournament.  Four rounds of 18 holes spread over two days. Ryan signed up to play as a Novice.  He did great.  As far as we know he is the only young adult with Down Syndrome  to ever play in a sanctioned Professional Disc Golf Association event. (PDGA is the international governing body for the sport) At the end of the tournament Ryan was “holding court” with the tournament staff, wives, & girlfriends before the award ceremony.  The director said that he had laughed more in the last 30 minutes than he had during the last week. Ryan was adding to his fan base rather quickly.

When it came time for the awards the director started with the announcement that he had a special award for a young man who had just played his first PDGA tournament. The crowd goes wild as Ryan goes up to accept his prize.  And just like the tournament champion always does; Ryan raises his hand to quiet the crowd so he can say a few words.  This was new territory for both of us.  And while he was most calm, I was, well …not so much.  I kept the outward smile, but on the inside I had an OshiMoment and wondered “what in the world is he going to say?”

The ruckus dies down, and Ryan says, “Thanks guys. Come see us at Crockett Park” (our home course) and sits down.  I should have never doubted him.

Part 2

The church called again.  According to the secretary on the phone, Ryan has signed up to go on a mission trip to Peru. Again.  Third time. I can’t explain it, but God is calling this young man to go to Peru.  And he hears Him.

Last year, after the second sign-up phone call, Cheryl and I told him that we all would go to Peru after he graduated high school --just wait.  He did.  We are.

A few weeks ago we went to our first training meeting.  We got to meet our leaders and the other team members.  That is when we discovered there are several families connected with the mission effort in Peru that have children with DS.  I guess we could say, “wow, who knew?”, but I am convinced that in some way Ryan already knew that we belonged on this trip and this team.

We began the meeting with the expected introduction circle.  “Please tell us your name and tell about any prior mission trips”, instructs the leader.  As the introductions move around the circle, Cheryl and I realized that Ryan will be speaking before us.  Uhm… Wonder what he will say?  The far side of the circle was an impressive bunch; most had been to Peru before, some had been to Russia, one had a yearly trek to Honduras, and then, and then ---- it was Ryan’s turn.

He says, “Hi, I am Ryan”.  He tells them he is a senior in high school and names the school. And then, “I go to mission trip to help my Granny and PaPa after the flood got their house. The whole Pittman family mission trip”.  I didn’t think his answer needed any explaining then -- or now.

Bread in a Baggie

Arrgh.  Another snow day.  The streets are a dangerous mess and joy o’ joy -- no school.  I suspect many would cherish a day of quality time with their snowbound child,  but at our house it never seems to work that way.   So, I creep into Ryan’s room at 5:15am and turn off his alarm.  I look over at this young man-boy and it rolls through my mind that he has no idea it has snowed and no idea that school has been canceled.  If sleeping ever became an Olympic event, then Ryan would be a national star. 

I wonder how long to let him sleep.  He is going to be pissed that there is no school.  I could use the word “upset”, but you might not grasp the correct level of upset-ness.  Way beyond grumpy, moving past disappointed,  and just this side of RoyallyRiled.  Yep, I’m sticking with pissed.  This kid loves school.  He misses his friends and teachers when he doesn’t get to go.  And he banks on his routine.  An off –schedule Ryan takes a few minutes to re-calibrate.

So, I flip on the lights at 9am and tell him to come get some breakfast.  His words don’t disappoint my prediction; I seek retreat in the kitchen and leave him be.  He enters soon thereafter, deposits his sleepy butt in a chair, gives me that look that only a teenager can generate, and flips on the TV.  I expect more Disney.  Actually I was hoping for a little Phineas & Ferb, but lately he has been on this Food Network kick.  We get Bobby Flay the BBQ boy.

He doesn’t move; not to take his morning whiz (go figure), not to eat any breakfast, not Nothing.  I say again, “Ryan if you want something to eat, go fix it”.  All I get in return is,  “I hate snow!”.  The next three hours are rather quiet as I type bids at the computer and  Ryan  watches the rotating display of chefs work their kitchen magic.   As I look back, I confess that I mis-read what was happening.  I was convinced that he was being a big grumpy lump; determined to do nothing, eat nothing, hear nothing.  He showed every sign of being successful.

Then he moves.  He pops out of his chair, spins the tv towards the stove, and starts unloading the refrigerator.  His vision of the sandwich of the century begins to take shape.  He chops onions like Bobby, he nukes a little bacon like Paula, he splashes the EVOO like Rachel (what an evil thing to do a defenseless sandwich, and it only gets worse), slices the turkey breast like the Contessa, and he stuffs his bread in a baggie and beats it with a tenderizer hammer like… uh….well…. like.  Dang it, I don’t know where he got such a notion, but the bread got flattened just the same.  He invites everybody to the condiment party; mustard, ketchup, sour cream, and of course salsa (hot sauce to you Tejas folk), smothers it in salt and pepper and sits down for his feast. 

Just for KicksAndGrins I sit down across from him to watch him eat the Creation.  He seems to be contemplating  the myth that “if a little is good; a whole lot more must be better”.   I excuse myself while he continues to pretend to enjoy his gooey mess of a sandwich and as soon as I leave the room I hear the squeak of the trashcan lid and the flump of the Creation hitting bottom.  The poor little sandwich had breathed its last breath and is now in BFI heaven. Oh, and I go upstairs out of earshot and laugh until it hurts.  Best snow day ever.

Flash forward to this morning. Ryan’s alarm goes off at 5:30am.  He gets up on his own, gets dressed, and heads for the kitchen.  And after 3 weeks of helping me make his WW Friendly Breakfast, he does it by himself.  Nukes his pre—cooked slice of bacon. Toasts his low-cal English Muffin and smudges on the fake butter spread. Sprinkles on some 2% cheese, scrambles an egg for the middle, and pours a glass of skim milk.   I don’t know what the TV chefs would say, but I say that Chef Ryan made a perfect sandwich.  And without a baggie.

The Ryan Network

I've been "writing" these Ryan stories for years, but not until this last fall did I start putting them on paper.  Nobody has seen them.  Not until today.  Today is the day I launch the blog.  And when I say that I don't know where this thing is going to take us, I mean it.  This one thing I do know, I don't want to get in the way.  I don't want to get in the way of Ryan and HIS plans; I don't want to get in the way of God and HIS plans; and I don't want to get in the way of Ryan's many, many friends --- and what YOU will bring to this table. 

So, I have been encouraged to build a frame that will hold us all. 

·        The blog starts today. 

·        Website; LearningToLiveOnMyOwn.com  (not active, but soon)

·        The Twitter account is LearningOnMyOwn

·        We have an email account;  LearningToLiveOnMyOwn @ gmail.com                 and we would love to hear from you.

At some point someone smarter than me (shouldn't be hard to find) will put together an email updater list thingy of interested folk; The Ryan Network.

Today is the launch. Here  we GO.


If you have time--- start with the first post; 11/29/10. 
Thanks, Ron 

Sure, But Where?

We found out about the coolest thing last summer.  While I was looking for a volunteer spot to fill Ryan's summer schedule we heard about Americorps. http://www.americorps.gov/  For a point of reference, think "Peace Corps in America".  If you just now took the web tour, then you also discovered that it is a federal program; scary big, perfectly bureaucratic, but somehow works.  I will explain it as I understand it.  Americorps is an organizational umbrella that provides funding and support for individual volunteers to intern/work at existing local non-profits.  

Each employee (think intern) commits to work at the designated local non-profit organization for either one year or two.  Not only do  they receive a monthly living stipend, but at the end of each commitment year they get a  nice chunk of money earmarked for the college of their choice.  And if you also receive a SSI benefit, it is not reduced.  Pretty cool, huh?  You might as well know that we like this idea.

We also learned that in some locations, Americorps has introduced an inclusive component.  Did you hear me??  Inclusive!! As I type this --- well --- I want to celebrate.  Not just for the hope that Ryan might have in connecting with this program, but for the hundreds of other young people that get usually get left behind.

We visited one such program in Nashville.  Mixed reviews.  They were willing to host an intern like Ryan, but their setup/programming/schedule was... was... uhm... loosey-goosey.  Not much predictable structure.  Not a set daily schedule at all. And it was over an hour away.  Would have been a difficult fit for Ryan (and us). So, we are still looking.

We are looking for a local non-profit that would be willing to partner with Americorps (free interns for a year, whoopee!), and also be willing to carve out an intern position for Ryan.  Where?  We don't know.  Doing what?  We don't know.  But, if this fell into place, it sure would be cool.

What About Europe

What do typical kids do when they aren't ready to go directly to college after high school?  We think that is a dang good question.  I have put together a short list in my mind (go ahead and take your shot, I left a pretty big opening, didn't I?) 

·        Sit at home and eat my food.  Nope.

·        Vacation in Europe.  Yeah right.

·        Dabble in the family business.  Might work for some, but nope.

·        Sit at home and eat your food.  Still nope.

·        Work a bit and save some $$ for college.  Ding-ding.   We may have a winner.

·        Note: this list is not copyrighted, feel free to use it with your typical child.

Make no mistake, Ryan wants to go to college.  He is quite convinced that he can do just about anything.  His reasoning, in expected DS style, is quite linear.  It goes like this; He is graduating, his brother and sister went to college after they graduated, so --- he will go to college. Got it?   In recent months we have reminded Ryan that college is not free and asked him what we should do about that.  After we got past his immediate response of, "just give them the debit card", we talked about how HE could help pay for college.  Oh, and we played the BrotherSister card.  Since they had to work to help pay for college then maybe he should, too. 

And speaking of "not free".  Since Ryan will not have a true HS diploma, he will not qualify for the Hope scholarship (the lottery thingy) nor is he eligible for a school loan.  Legally, there seems to be a hole of some kind that these types of students drop in. There are rumors about these laws being changed, but in the mean time, we would have to come up with the cash to pay for college for Ryan.  Not just any cash; but Vanderbilt-flavored cash.

Back to the work scene.  That "solution" for Ryan for the next year or so keeps bubbling up.  We like it.  It has taken us some time, but we are rather comfortable that we now have a direction.  All we have to do is find a job of some kind that would accommodate Ryan.  Well that, and it would be nice if was full time.  Oh,   and it really needs to be more daytime than evenings (his social life couldn't take the hit).  So, I guess that's it.  Hmmmm...except for the transportation thing.  Hmmm.... That should do it.

We have heard of companies that have an inclusion component for employees like Ryan.  Some have made a company-wide commitment (from management, HR, etc)  to make it happen.  Besides job training and job coaching, some have taken it a step further and let the employee "sample'   3 or 4 positions throughout the year so they can find the best fit.  We are actively seeking a place like this for Ryan.