The Year That Changes Everything...We Hope!

School began for us this week, after a very unusual summer.  This was the first year I truly hit a road block with what to teach, as typically I have curriculum purchased and a plan in mind by April of the prior year.  Not this year, and now I better understand why.

I changed, they changed, we all changed, and I could not have anticipated what would have been best.  I may still be way off base, but I sense something is moving among us, and I am listening, paying attention, and pulled a year together in late August which has proven to be a winner thus far. 

I know these kinds of posts aren't all that interesting, but we are heading into an intriguing phase, and it may or may not be a success.  And since this blog is really to document things for our family, I do hope you'll indulge me, and scroll right on by if it is too boring!  My feelings won't be hurt ;-)

This year is Angie and Kenny's senior year.  As I have already shared here, it is a tough one.  For kids like ours, the uncertainty of the future can be pretty overwhelming, and it is our job to help them be realistic, but also to grab hold of the fact that God has a purpose for them, and they will have a meaningful life even if it is different than anticipated.  Olesya is a junior, and she seems more at peace with things for the moment.  Joshua is a sophomore, and Matt is in his second year post-high school.

Many people have questioned us about what Matt is doing, so I will start there!  Matt has crafted his own unofficial college experience, fully his choice, and what an education he is getting...actually I should say "chasing" because that is exactly what he is doing!  This year he has set the bar high.  His course load looks like this:

Math
Lambda Calculus
Statistics with R (programming language) 
Linear Algebra
Calculus 3
402 hours of learning from textbooks and online sources

Electrical Engineering Basics (Udemy courses)
Fundamentals of Electricity
Master the Concepts of Digi Project: Computer made of simple logic gates
90 hours of learning

Language Arts and Culture
The Cathedral (Great Courses)
Art Across the Ages (Great Courses)
I Know Why the Caged Bird Sings (Maya Angelou)
Other assorted novels on Psychology
75 hours of learning

Computer Science
UX and Web Design Master Course (Udemy)
Intro to JavaScript (itpro.tv)
Intro to Node.js (itpro.tv)
Complete JavaScript Course (Udemy)
Full Stack JavaScript (sitepoint.com)
Tensorflow
550 hours of learning

He also has to complete his Linux certification which he started last year, and his pilot's license, which he is almost done with, as he has passed the written FAA test and now is scheduling the actual flight and oral exam.  So Matt has a hugely ambitious year ahead.  He surprised me for my birthday and is slowly working on a new web site for my Blue Collar Homeschool group.  His ultimate goal for the immediate future is to be a front and back end web developer, and he is making strong progress toward that goal. While he admits it may not be what he wants to do long term, it IS where he feels he will start. 

Matt has been super happy studying on his own, creating his own path toward certifications and hard skills.  He is incredibly invested in his learning, and I doubt he would be to the same degree were he attending college.  Many people don't really understand what he is doing and why he is doing it at home, but we do.  Once someone has had the freedom to learn as they wish, as homeschooling provides, I am beginning to see that it is similar to being self-employed.  It is very hard for people to go back to being an employee once they have had a taste of the freedom to be fully self-directed if they have had their own business.  The same is true with education. 

Josh is one busy 15 year old!  He is finishing the last few lessons of geometry, then moving on to Pre-Calc, having completed Algebra 1, Algebra 2 and College Algebra!  He is taking advanced chemistry this year and has enjoyed the first few lessons, and we are getting serious about the saxophone this year, he and I, and will try to be reasonably proficient by year's end if we can manage to put in enough time.  He is also doing other classes with the other kids, and playing volleyball and basketball. 

Angela, Olesya and Kenny, along with Josh, are all enjoying Modern World History, and the History of Rock and Roll together!  Honestly, I am patting myself on the back with this one, as even on Day 1 it proved to be a brilliant combination.  We are using a college level text for the History of Rock and Roll, and it pairs beautifully with where we are in World History, and already it is creating a highly engaging environment to talk about arts and culture and the musical influences of our era.  The conversations developed by this combination are quickly proving to be rich, deep, and leading us in all kinds of great directions.  This is no lightweight course, and already we have asked ourselves the question:  Does the music shape the culture, or the culture shape the music?  We have listened to Bing Crosby, Frank Sinatra, Benny Goodman, Glen Miller, and  Aretha Franklin as we talked about the capacity to take a song and make it your own when you are actually not just a typical pop star of today, but a truly gifted musician and singer as many of our stars were in the past.  Monday they are to come to the table with examples of music of the South, the spirituals, etc. that were part of the roots of rock, and we will surely have a thoughtful discussion around those sad roots.

We are using several things for our English course, two college texts and fun reading of a JK Rowling book that is not about Harry Potter!

Our business writing book is spectacular, and everyone is enjoying its real world approach!  We have also read 3 stories in our anthology which is also working very well for us, and we may really rip through it. 

Each of the kids has their own special learning projects this year as well!  Josh is working on completing his year long film project, which is moving along nicely but is very time consuming.  Olesya is determined to learn basic coding and Search Engine Optimization so she can be my "webmaster" for Blue Collar Homeschool.  Already she does all my updating so I can stay connected more and engaged in conversation with our group, which leaves little time to add to the web site.  Such a help she has been!

Angela is tackling a design project for our master bathroom, as she did a wonderful job on her own bathroom that she shares with Olesya, and she is putting her learning from her Interior Decorating course to good work!  She will budget it, design it, and do the actual painting and other work that needs to be done.

Kenny is tackling perhaps the most ambitious project, especially in the organizational end of it, and that is writing a memoir about his experiences with FASD and its intersection with faith and growing into self-worth.  Kenny is a very emotionally connected writer, and I am helping him lay the organizational groundwork for the book.  He wants to share with others what it has been like for him, as he realizes that there are other families out there who need to hear from someone a little further down the road and who has the ability to articulate their experience well. 

These three are amazing in their work ethic, their positive attitude, and their desire to succeed.  Sometimes, I don't even know how they manage to remain as upbeat as they do, even after tears have been shed in frustration or disappointment, they pick themselves up, dust themselves off, and try again...and again...and again...and often still fail.  That is simply truth.  But what they DON'T fail in is determination.

One thing that has been a surprising struggle has been math.  We are using an adapted math program this year, as Olesya can not do above 3rd grade math despite our diligent efforts year after year.  Dyscalculia makes it virtually impossible for her brain to function in a math oriented way.  Angela worked up to Algebra 1, but that was about as far as she could get.  Kenny set the world on fire for an FASD kid (Math is usually a real challenge for those with FASD, Olesya is far more typical, with Angela close behind) and he managed to make it all the way through Pre-Calc with a C!!!  We were enormously proud of him!

This resource has math problems as you will deal with math in your everyday life...coupons and meal planning, calculating tax and totals at a restaurant, figuring out whether it is cheaper to buy a particular product in bulk.  Kenny has whizzed through it (Josh has said he has never seen anyone do mental math calculations as quickly and accurately as Kenny!), but Angie has been stumped far more than we anticipated, and Olesya has gotten more right than we thought she might but still there are problems she simply can not do.  This will prove to be a more challenging math course than I think any of us thought it would be, which is good...but admittedly also quite disheartening for some as it really is very simple math.  However, Kenny has also taken on the role of encourager and explainer at moments, and that is always sweet to see.  We will just keep plugging away.  For Angie, we have discovered it isn't the actual math that is the problem, but actually taking in and processing the instructions accurately.  That leads me to another resource I discovered that we are using:

We don't have any idea if we can improve brain function in the areas of reasoning, making connections, processing information correctly, etc. but I am never going to give up trying.  I discovered this book and others from Brubaker Books which specializes in workbooks for cognitive rehab.  They aren't inexpensive, at almost $100 each, but I found one used to try and with our very first two assignments realized I need to track down the others. They have books for word recall issues, cognitive delays, receptive and expressive language development, and more, and these are for teens and adults, not for kids.  Our first two lessons showed a specific area of difficulty for all three, and each had blazed through it feeling it was simple and easy, and were shocked to see their inability to make typical and appropriate connections that a healthy brain can.  The second lesson was much better, but we clearly have hit on the right product to work on the very real, tangible deficits we experience each and every day.

This was hard.  I won't lie.  It is sort of a slap in the face to any of us when we think something has been incredibly easy only to discover we had no idea how poorly we did at it.  Harder yet is the fact that this isn't the sort of thing you can study for, this is something that may never be able to be remedied no matter how much work you put in to it. 

Daily, I am humbled by our kids and their hard work at accepting truths that are painful, and their kindness toward me as they do so.  If ever I needed heroes, I don't have to look far for them, for I have them sitting right before me.

And it is these heroes of ours that we are fighting for, to ensure they have a life filled with purpose, meaning, and success in as many ways as we can find.  That leads me to our last courses, Business Start-Up and Marketing.  After Angie's challenging circumstance at the home health agency this past spring, I think we were all a little shocked at the reality of how difficult getting and holding a job might prove to be for all three kids.  Most would look at Angie as our "most likely" to make it of the three, but her brain dysfunction was hidden beneath a veneer of humor and emotional intelligence.  There was no doubt in our mind after that difficult experience that our fears for their futures were not unfounded, and in fact might have been less than they should have been.

We all had a lot affirmed with that experience, along with other circumstances this past year, and though we would never have wanted it to be true, here we are, and there is no denying it.  Our concerns as the kids have hit the young adult years were real, whether others who know them believe it or not.  They are brain damaged, they will struggle, they will be unlikely to hold traditional employment without a lot of on the job support.

And that is where our thinking started to turn the corner as we all accepted the harsh truth.  That is why school planning prior needed to be set aside.

We sat down with the kids multiple times and talked things through, and we all came to the same conclusion.  Together, they make one really terrific brain!  Individually, they all have enough deficits that holding a regular job for any length of time and not getting fired...if they can even get past training...is going to prove to be very difficult.  We began to circle around the idea of all three of them working together in a business of their own, because thankfully, where each has a deficit, another actually has a gift! 

Olesya has MAJOR organizational skills and enjoys being in the kitchen.  She also can stay attentive to more repetitive tasks and focuses very well.  However, she stutters when she feels put on the spot with people in conversation, she is an introvert to a certain degree, and math is beyond her grasp.  Kenny has phenomenal math skills, is great with people, but couldn't organize his way out of his own closet! Hahaha!  He is also a superbly good thinker about business and intangible things, and is developing into a far above average Facebook group moderator...he really shines there.  His ability to stay on task if interrupted is a major issue, his memory stinks, and his auditory processing disorder makes following instructions accurately almost impossible on a consistent basis.  Angie has the best emotional intelligence I have seen in anyone her age, she has a true flair for putting things together in terms of layout, design, art and decor...real gifts there.  She is also finding math to be a little harder, and her accuracy with instructions is a major issue.  She has minor memory lapses, but overall is better in that category than Kenny is, and her attention span seems perfectly intact.

Looking at all this and more about each of them, talking it through thoroughly, and recognizing that they may never be able to hold a job with someone who doesn't completely understand all the issues involved, the "function is here today, gone tomorrow" factor, the reteaching that needs to happen consistently and the visual supports that need to be in place, Dominick and I feel we have no choice at all but to at least try and see if we can pull something together in terms of a business for them. 

Will it support three of them?  Likely no, not enough for full financial independence.  But we need to start somewhere, and they need to experience some real success in a real world situation, where they can continue to work on skills and let their brain continue to mature and grow.  FASD folks have brains that continue to develop well into their late 20's or early 30's, and sometimes what can not be done at a younger age can be done a little older.  Can they do it?  Actually, if worked with and in an environment where their disability is uniquely understood, they ALL perform above average as long as support is in place.  They also have a work ethic second to none.  Are they smart enough?  FASD isn't about intellect, it is about malfunction.  Of course they are, and they cover each other's areas of disability quite nicely.  Can they get along in a partnership of some sort?  Without question, joyfully, beautifully, compassionately...they always have.

As crazy as it may seem to others, it may be their only real hope right now to have something achievable post-high school.  And you know what?  We believe in them!!!!!  More than anything in the world, I believe in our kids, all of them, and I know God has something unique and marvelous waiting for them if only we all do as we always have, and say "yes" when our gut says something....and our gut is saying this is what we need to do so they can not only BE employed, but remain employed.  Who better to understand a week or a month when your brain simply isn't firing right than your own siblings who have the same problem (hopefully on a different month!! Hahaha!)  So, we are working with the above shown resources, and going to learn and explore ideas this school year, and put something into play.  We have already done a year of Entrepreneurship two years ago with the above textbook, but are revisiting it to guide us through things like writing a business plan, etc. 

We are not quite sure how we are going to manage this financially, but are willing to do whatever it takes...we feel we have no choice if they are going to have any chance at all.  So what?  We have all eaten ramen noodles and beans before, we can do so again.  Guess we may have to do without our "big meal out" each week with the slice of pizza and a drink at Sam's Club after church! HAHAHA!  We are taking it one step at a time, and trust in a way we never have before.  The basic plan at the moment is to use space that is unused at our liquor store to try and develop something in, and then if I am not around to help, Dominick is right next door, or our employees would even likely be kind enough to help the kids in an emergency.  Built in support close by means far more chance of success, if we come up with a good idea.

As Angie and I have had some of the deepest,  most heart-wrenching conversations these past couple of months as she is working her way out of denial and into acceptance, I have taken to  heart myself her own brand new mantra, "We are not going to be a statistic...we will prove the statistics wrong!"  Now THAT is a positive statement if ever I heard one!  The stats are daunting for kids with the invisible disability of FASD. 

• Only 8% of those with FASD don't struggle with independent living.
• 80% live dependently with a caretaker of some sort.
• 53% of males and 70% of females have substance abuse problems as adults.
• 86% of people with FASD have IQ's in the normal range and yet do not qualify for services of ANY kind.
• 94% of adults with FASD have mental health problems.
• 70% of all students, by graduation, will have experienced school disruption.
• Over 40% by adulthood have experienced incarceration.

In discussions within our family, we give thanks for the decisions we have made thus far that others have often criticized as being "helicopter parents" for they know not of what they speak.  This is NOT helicopter parenting, this is support for disabled individuals who may not look disabled, but indeed are.  No one would say that if they were in a wheelchair, but we get the looks, the questions, time and time again.  

And you know what??  We have ALREADY beaten the odds! Most kids with FASD by ages 19 and 20 have already had multiple factors kick in to alter the course of their lives with poor decisions made, too much freedom without enough protection, no real understanding of their disability, and more.  As the kids themselves have pointed out recently, we have no pregnancies, no addictions, firm loving relationships all over the place, high school graduation on the horizon with a real diploma that may have one adaptation here or there for disability, no arrests, no sexual misconduct, no mental health admissions.

WE ARE BEATING THE ODDS...and we are going to do our best to continue to do so!!!  There are no guarantees, but we are all putting our heart and soul into this life we live.  It has never been easy or simple, in fact it has ALWAYS been hard and complicated!  But the rewards have been beyond description, and we have all learned patience, diligence, faith, and trust through the years at a level few are blessed enough to learn.

Here is to my students...the Class of 2016, Class of 2018, Class of 2019 and Class of 2020...Matt, Angie and Kenny, Olesya, and Josh.  You are the best students a teacher could ever ask for, and the best teachers I could ever have.  You are my heart and my life, and you will never, ever be merely a disability nor a statistic, my loves.  Never.  Trust along with me, that just like the theme of your Youth Gathering in Houston, this will be The Year That Changes Everything!!