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.  

Solve for X

If we do nothing then nothing will happen.  And "nothing" for Ryan, and many like him, is to sit in front of the TV at our house; all day, everyday.  So, CW says that you have to do "something".  We have to be pro-active in some way.  We need to figure out how Ryan will spend his time.  So far, all we have done is cross things OFF the list.  It doesn't look like staying at the public schools for another year or two will benefit Ryan and he needs some time to grow up a bit more before he enrolls in a college experience program. 

If you are local and connected, you will ask the "have you thought about?" question for several area programs; Voc Rehab, TRC, etc.  The answer is yes,  we looked at them; and no, not  a good fit for Ryan.  Did it again didn't we?  Crossed more stuff OFF the list. 

Ryan was watching the movie, "Evan Almighty" last week.  Morgan Freeman, in the role of God, is telling Steve Carell's character to build an ark.  In one scene, Carell responds by saying that he just couldn't do it; he had plans.  And God laughed; big, loud, and long.  While it is funny to watch, I admit that the personal application is much more serious.  News flash to me --- I am not in charge.   Now, it you don't hang your hat on the same spiritual nail, I understand; But understand this--- I do.

So, yes, we are going to hammer out some plans for Ryan because we love him and don't want "nothing" to happen.  But, at the same time; this is a story in progress.  God has an awesome plan for Ryan and I can't wait to watch him solve our little puzzle.

What About College?

We found out two years ago about an upcoming college program that might be for Ryan.  While it appears to be a wonderful option, we accidentally ran nose first into another label.  A new one for me.  It was called a college experience program for the "intellectually disabled".  Fair enough.  All in all; not a bad label.  It's descriptive and even accurate.  We knew that since Ryan couldn't pass the exit exams he would get a Certificate of Completion instead of a high school diploma.  And without a diploma, he can't get into even the lowliest of community colleges; even to audit a class.   So, intellectually disabled it is.  While this new label may open some marvelous doors, it isn't a word I choose to use in front of Ryan.

It seems like a big circle. We are back to where we started.  When Ryan was three, he qualified as a special ed student in the public school because he was determined to be  "developmentally delayed";  a phrase that has become the catch-all category for most any student needing services at the age of three.  But, when it came time for first grade the school system had to have something more substantive to write on that line. I saw it first.  No way did I want it said out loud.  No way did I want Cheryl to see it.  But, she did.  Two little letters.  An "M" and an "R".  Our son was to be labeled Mentally Retarded.  We weren't in denial, we knew full well that Ryan's cognitive abilities were seriously limited.  But, it hurt to see it in writing.  It was explained that without the label,  he couldn't receive any services from the special education department.  Gotta' love them labels.

Last fall we  visited the Vandy program.  http://kc.vanderbilt.edu/site/nextstep/ It's amazing. The driving force is the notion to develop  life-long learning.  They have a class component, a  job/intern component, and a well done social/community package.  Plenty to like.  Do we think this is a good fit for Ryan?  Big yes.  We think he would thrive in this environment and love it, love it, love it. But, we aren't convinced that next fall is the right time. Two reasons.  First, Ryan isn't ready for college just yet.  No surprise here because many typical students aren't ready for college as soon as they exit high school.  Ryan needs to "grow up" a bit more.  And interestingly enough, the Next Steps program has raised its acceptance age to 28.  They seem to be saying the same thing; no hurry. The second reason is about the program itself.  It is new, very new.  Only two semesters under its belt. It stands to reason that the program will improve over time.  We have time.  And maybe in another year or two they will be able to add a residential component.  Or.... maybe he could end up going to college any number of places??  http://www.thinkcollege.net/

But, for Ryan; the quest is on.  We are still looking for the right place for him for next year.  I am convinced that we need help.

Dark Gold Would Be Nice

Cheryl is the smart one. Most folks already know that, but just for the record; I know it, too.  She said," Maybe we need to move into Nashville."  Her reasoning made sense.  Our move to get Ryan in the best school zone had taken us waaay out into the burbs, and Nashville would have so much more to offer Ryan in our quest for independence.  She was right; Nashville had great neighborhoods, more places to work, and public transportation. So, late this spring, the house goes on the market.

Yeah. The housing market. Pick a word; soft, depressed, lagging, crappy.  Maybe we can make the move,  maybe not.  God knows, I don't.  And while we want to  create a new chapter for Ryan by moving to a better area, we may not get to.  But, whether we move or not; one thing is for sure --- Ryan gets his own  space.  Cheryl and I have this conversation with Ryan almost every day.  He is ready for his next step.

First the "why".  You already know that our plan for Ryan's first year out of high school is still in process at best and a little sketchy at worst, but in all likelihood he will still be living at home.  By establishing a space in our house that is singularly Ryan's we hope to initiate a year of intense training on the responsibilities of independent living.  Don't get ahead of me, though.  Our long term plan for "independent living" would look more like 2 or 3 roomies with a live-in helper  than Ryan living totally on his own.   Ryan talks readily about "taking care of  myself" and doing things "on my own", so we are going to give him that opportunity.  Stay tuned for how that fleshes out.

We are already looking at houses in town.  Ryan gets it.  He lays claim to his space like a pro.  "This is my bedroom, and that room will be my  den....". But if we stay in our current house we launch the Ryan Room Makeover.  My office becomes his bedroom and his bedroom becomes his den/kitchen.  Yep.  I said kitchen.  Think in terms of a boarder kitchen; microwave, toaster oven, pantry, and bistro table.   Don't be alarmed.  Ryan isn't a kitchen rookie.  He helps us prepare most of our family meals and he can cook several things my himself; spaghetti & meat sauce, omelet, tuna salad, and  hot dogs, to name a few.  He wants to learn how to shop and plan his meals all by himself. 

He also said he wants hard wood floors. Smart kid.  I asked him what color did he want my guys to paint the room?  (My day job is a paint contractor.)  He thought about it a while and said, "Dark Gold would be nice."  Yes, it would, Ryan.  Yes, it would.

Half Of An Idea

I hate summers.  Not for me, but for Ryan.  Prior to every summer we search, research, plan, and scheme for a way for Ryan to fill his days.  Most of Ryan's summer breaks from school have been pitifully empty.  Boy, does he miss school.  Sure, he misses his friends, but he also misses the routine.  We think he needs the routine.  Oh, if you have forgotten who "we" is, check No Regrets above.

Ryan wakes every morning to an alarm clock.  If we happen to look in on him he will respond by asking, "What's today?"  There was a time when I would answer; day, date, schedule, plans.  I had always assumed that he was asking because he didn't know.  Buzz.  Wrong answer. No prize for you. Ryan was just launching the conversation; and if I just paused, he would tell me what the day was all about.  Easy for him to do during the school year because our lives are on the big ugly dry erase calendar in the next room and Ryan knew exactly what was next. 

But, during the summer, with nothing much going on, he loses track of time and goes in default mode.  Not good.  Really not good.  Default mode is TV.  So, each year we try to package a few weeks of something other than nothing.  Maybe a family vacation, or a bit of day camp, or  a trip to see his sister and brother-in-law in the Big Apple.  Yep, he flies by himself.  But, we never completely filled his summer; at least until 3 years ago.  That is when we found a camp in PA that was perfect for teenagers with DS. It cost as much as a semester of college, but for two years running,  Ryan spent 7 weeks of his summer away from home.  His concept of independence grew by leaps and bounds, but after two years it was time to do something that was more about responsibility and less about fun.  Time to grow up.

So, I had half of an idea.  Maybe he could fill his summer with work like a typical teenager.  He already had the job at Olive Garden.... hmm... how about  picking up a second job.  Not a paying job, but a volunteer job.  Time for more research.  My notion that this would be easy got knocked in the head posthaste.  All I wanted was a handy-dandy non-profit/hospital/something to give Ryan a place to work for the summer.  What I found was  plenty of opportunities to volunteer, but no ready-made place for Ryan.  It might be do-able, but it would take longer the one summer to make it happen.

But, through my phone calls I met a  state contact for the Council on Developmental Disabilities.  He was packaging the annual Youth Leadership Forum;  a conference for high school delegates with disabilities held on Vanderbilt's campus.  Ryan applied and was accepted as a delegate.  He thought he was the BMOC as I dropped him off for a week in the Vandy dorms.  We didn't fill his summer, but he latched onto the notion of self-advocacy like never before.  My half of an idea turned out not half bad.

I Absolutely Agree

That's what shee said.  I have been dying to type that.  I'm going to laugh whether you do or not.  Okay, I'm done.  But, really; that's what she said, " I absolutely agree".

Cheryl made the call.  We had an appointment to talk to the Special Education Director of the school system.  Our expectations were high; for a lot of reasons.  First, (let's call her Nancy) Nancy knew us and she knew Ryan.  She was not a disconnected administrator.  She had been an advocate for Ryan from our early days in the system.  And now that I think about it -- she had even been to some of his IEP meetings.  And in addition, she knew stuff that we didn't know.  The expert.  The guru of gurus in all things special ed. 

The meeting started with an update on Ryan.  Nancy's interest in Ryan's progress and plans was real.  She has always gotten points for that in my book.  So, we told the Ryan Stories; his school work, his extra-curricular stuff, his job at Olive Garden.  "He has a job?  How did that happen?" Enter proud Dad.  I explained how we thought that his social  skills (read: you should see him work a room.) matched the expectations of a restaurant host, then why not go to the restaurants and ask for a job.  So, Ryan and I rehearsed what to say a few dozen times and hit the road each afternoon.  With Ryan in the front, we would walk into the lobby, and he would ask for the manager.  News to me; when you ask for the manager at a restaurant -- they come, quickly.  They would expectantly look at me, then look at Ryan, and then lock on me.  That is when I stepped back and Ryan stepped up.  "I would like a job application please", he said.  Proud papa.  So, after a week of asking and filling out applications, the manager at Olive Garden called back for an interview.  I sat two booths away as Ryan did his thing.  Done deal.  He got the job.

Cheryl says, "Ok, Nancy, before we go any further. Just a reminder.  We have told you and the  folks at school for some time now  --- Ryan will NOT be receiving transition services at his high school campus.  We think that is wrong."  And she agrees. Absolutely so.  Pause. Comma. But.  She continues, " We agree that it would be much better to execute transition services at a campus other than the student's high school, but for now, (that dang "but" again) that is all we have to offer."

Until that moment, I thought we were going to walk out of that meeting with a newly discovered option.  I thought that Nancy would tell us about some wonderful, new, and amazing transition model in our existing school system that was just perfect for Ryan.  Nope.  No such thing.  She had more to say, but so that I won't be the one speaking for her  --- let me scribe what I "understood" her to say; she told us that  based on Ryan's current progress (skills, jobs, etc) there would be very little in the school system transition program that would challenge Ryan. In other words; he is already past what they had to offer and ready for something else.  Something else? Got it. Go find that "something else".  We need help.

Let Me Check My Calendar

I didn't see it coming.  I had no idea that we would be driving Ryan to a different happening almost every single night of the week.  Sure we had hoped that Ryan would experience the life of a "typical" teenager, but --- this is hard to say, hard to confess --- as parents we were prepared for some serious compromises. In our hearts we wanted the best and the most for Ryan, but in our head we saw Ryan, as an adolescent, miss out on a lot of stuff.

Two areas of concern. Both connected, but yet different; developmental growth and discretion.  Sometimes (as an adolescent) his capabilities weren't developed enough to keep up  with his peers; he didn't go to any sleepovers, he missed most all of the church off-campus events, and he had no regular after-school pals.  We often wondered if he would ever manage to "hang" with his peers.  Secondly, the phrase,  "Ryan exercised poor discretion today at school" became his daily report folder mantra for a variety of offenses.  Okay, okay;  most were rather entertaining.  This one comes to mind: During  lunch a table-mate flicks a pea  across the room ---and since Ryan has seen it on Disney--- he joins in with both hands and yells, "food fight!".  Arrgh!! We taught him the word "inappropriate" when he was most young, and we coached/debriefed/warned/talked/talked/and talked about how to make good choices. A 24/7 kind of life.  Cheryl and I have been on task for 19 out of 19 ryanyears. Prayer has gotten us through them all.  Some days we were scared.  Not scared about what Ryan would do/wouldn't do; scared that he would always need someone to watch him.  Always.

Time for some candid talk. As parents, we can easily remember the GrowingUpYears with our older children; pure joy highlighted by a fistful of  awkward, frustrating, and difficult moments.  Tough sometimes, but in essence  --- that is what we signed up for.  At some level we knew what to expect. We weren't the first set of parents to have a stubborn 4th grader, or a quiet 5th  grader, or a moody 7th grader, or a mouthy 9th grader --- and we wouldn't be the last.  Let me say it again; we knew what to expect.  The timeline was tried and true; driver's license at 16, graduate from high school, and head off to college.  Sure, chapters and chapters of the roller coaster called  "life" in between the commas, but that was the typical expectation.  But, with Ryan it was----different.  Somehow, wrong or right; we expected (tears on the keyboard moment- give me a second) less. 

But, by God's mighty hand, not the case, not now.  This week:  Ryan is working two nights at the Olive Garden (a great host, BTW.) He always goes to the student ministry thingy; we drop him off at the sidewalk and two hours later pick him up again.  He has    high school wrestling practice one afternoon, and another evening for a wrestling match;  he is one of the managers. Oh, and two of his friends who are home on college break have called to pick a night to "go out".   Good luck with that.  We will have to check his calendar. 

Stop Thief

The world of special needs has its own language. When we were first kicked into that world we knew little of septal defects, early intervention, or inclusion.  Acronyms? A stinking alphabetic party! OT, PT, VSD.  But, our all time favorite has become the gem called IEP.  Individualized Education Plan.  The Oh-ficial name for the federally mandated/state executed program for special education students to receive services in the school system.  Joy o' joy. 

As is normal, (that's funny -  I just typed "normal") Ryan started to go to public school for special education services at the ripe age of three.  We have been attending IEP meetings ever since.  Texas readers will note that like most things, the Great Republic of Tejas has managed to re-name everything, so the IEP became the ARD.  At one time the A, the R, and the D stood for something, but no one really remembers what. 

The IEP meeting is attended by an ad hoc team; parents, administration, special ed teachers, general pop(ulation) teachers, and district gurus.  As parents we learned a lot about how best to advocate for Ryan during those meetings.  On rare occasion over the years, Cheryl and I were out-gunned and out-numbered by bureaucratic doo-doo heads -- and those  IEP meetings were dismissed with no parent signature and a pause while we re-grouped for a more sensible IEP team.  Stories later.

But, over the last few years our annual IEP meetings have been, well ... fun.  A room full of Ryan supporters.  With what seemed like no effort at all we mapped out a plan for Ryan's education.   (yeah, I know better  - these educators worked their bow-hinnies off on Ryan's behalf.)  The word is "Individualized".  Ryan's teachers/administration hauled that word in for a touchdown -- every time! Custom made plan.  Tailor made classes.  For me, the perfect example is last years' class schedule.  The story starts with a couple of science teachers asking me if Ryan was going to take any more sciences.  They missed him in class.  I asked them to give some thought to which subject would interest Ryan AND be a curriculum that could be readily modified.   It was a given that since Ryan and math clicketh not, that we would avoid physics and its sisters.  So, we signed him up for something called Applied Science. Oops, bad call.  After two days we all agreed --- too much math.  Much hand wringing ensued because we were "out of sciences"--- no more to choose from.  But, then Ryan's Amazing File Handler offers to modify --- get this --- Honors Anatomy! She reports that the teacher is on board and they are ready to go.  So, Ryan becomes the first IEP student in the district to take Honors Anatomy. 

And now my point.  We observed the Transitions class.  One pile of students.  One schedule.  Everybody goes to the same place and does the same thing.  In a rather tacky moment, we asked ourselves, "so, the pace is chosen by the least capable?  Yuk."  We felt robbed.  Someone stole the individualization that made high school great!  We need help.

No Regrets

Ah.  The clarity of hindsight.  We often look back to how we landed in Middle Tennessee and are so grateful that things have worked out so well.  Time for some introductions; "we" is me (Dad/Ron), my wife (Mom/Cheryl), and our 3rd child, Ryan, who has Down Syndrome.  Our older children are grown, gone, married, awesome, and charged with the task of producing some grandbabies.

The year is 2003 and we lived in Dallas. We loved our jobs, our house, our friends, our church, and  our neighborhood, but things didn't look good for Ryan's school.  Middle school was on the horizon and our visit to his assigned school was a bad day in our family history.  We met with the vice-principal. To say we were not on the same page would be like saying that Noah met with a little rain.   While Cheryl and I are asking about inclusion and all of its offspring; teachers' assistants, modified curriculum and  proper general population placement --- our gracious host kept telling us about the great teacher they have in the room at the end of the hall.  We pushed hard as we explained that we wanted Ryan to go to regular classes.  And. He. Pushed. Back.  He told us that Ryan would NOT be going to regular classes and we needed  to be "realistic".   Realistic?  REALISTIC?  We lived with the realities of DS every day.  Cheryl got extra points for not smacking him in the nose. I know, I know.  Federal law was on our side.  We could have fought (and won) for proper placement, but we were tired of that fight. So, we left.  We left the school, and after a year of praying, we left Dallas.

We landed in an amazing county with a school system that is known for its inclusion philosophy.  For the first time -- in a long time -- Ryan wanted to go to school.  He had advocates everywhere!    His classroom teachers were welcoming, his resource teachers were stretching him,  the district gurus were guiding him, and most especially, his peers were including him. Ryan just blossomed. 

Ryan's high school experience has been more than we had ever hoped.  He has been on the track team for 6 years; throwing shot put and discus.  Somehow he got  hooked up with the school media team and has a weekly spot on the school news.  (Cue graphic, cue music, cue intro-- "Ryan On Sports")   His commitment to JROTC is  Strong² ; loves his uniform, the volunteer days, and makes a decent flag raiser at the ball games.   His relationships with his friends tells the whole story. BTW, they should have their own Hall of Fame. They always rise above; going out to eat, hanging at the ball games, sitting together at lunch, riding in the limo for  prom. I watch them together and thank the Father above for what I see.  

Free Services - Can you beat that?

So, what happens after high school? The default answer is to just stay in school.  Federal law allows for a student who is receiving special needs services to "stay in school" until the year of their 21st birthday. Called "Transition Services".  A pretty good deal actually.  So, like all parents we have been asking for 3-4 years, "so, what kind of transition services will Ryan receive?"

Launch the learning curve. It seems that every state/school district has a different answer. And every system has a built-in apology; just like Vandy Football  fans  --"Wait until next year, it will be better!"  The range of quality went from the amazing to the sad.  We found districts with a well-funded magnet campus; complete with customized class work, transportation to area community colleges, job training, job sampling, job coaching, and even job placement.  But, not our district.  We found districts that offered little more than free day-care. But, not our district.  Our school district (opinion alert) offered a semi-happy medium.  Not great, but not awful. 

We discovered that in our district each area high school  coordinates their own program. Once again, some better than others.  Ryan would fill his schedule for five days a week.  That's nice.  Ryan would get transportation.  That's nice.  He would get class room instruction.  That's nice.  He would go to area workplaces (McDonalds, Wal-mart, thrift stores, etc) and "practice" working.  That's weird.  And at some point he could connect  with Vocational Rehab Services and even Vanderbilt's job placement service called Project Opportunity.  Very nice.

We liked the song well enough, but  we discovered one huge scratch in the vinyl.  Ryan would go back to the same high school, the same campus, and the same resource room --- as if he had never graduated.  Free? Yes, but at a huge cost.  This would just devastate  Ryan.  He tells us every day that he is a Senior!  He has no intentions of going back to that campus.  We need help.