A Very Special Sunday

This past Sunday, Kenny was a guest preacher at our church, having asked if he could offer a message that was working on his heart.  Our pastor kindly allowed him that opportunity, and Kenny delivered a beautiful message with confidence and depth.

Sitting there watching him, hearing his words, there was so much going through my mind, and my heart constricted.  Tears streaming, I was surprised to discover for the first time in my life that I was literally overcome with emotion, completely unable to stop myself from crying.  Feeling so much like a fool, knowing that there was no way I could explain all that was churning inside me, I wished desperately for the floor to open up so I could silently slip away to collect myself.

Real emotion is rarely shared publicly, we all work so hard to hide our raw moments, and why?  Why do we wall ourselves off from others so that they may never see our truest selves?  I have nothing to hide, so in that moment I decided to bat those thoughts away, let the tears fall,  and feel safe within our compassionate congregation, understanding that seeing my tears would do no harm.

After worship, many came up to me saying I must be so proud.  One special couple though, seemed to get it more than most, as each approached me separately and enveloped me in their arms, having a sense that this was more than pride and there were no words in the moment.

And though there was indeed a little pride, that was not the focus for me at all, though I am sure that is the obvious first thought of others.  I have waited a few days to try and share here about it, for initially I couldn't even express it.

I had to re-read Kenny's sermon later in order to pick up everything he had said, for as he spoke, my mind couldn't help but take a walk back in time, and moments...so many of them...flitted quickly in and wove pictures in my head.

Our dear friends, Jane and Steve, were present, and were perhaps the only ones in the sanctuary who could understand, for their very first day at church was Kenny's first day home.  They have been there for every painful step of our post-adoption journey, and I have no doubt there were a lot of things they were thinking about as well.

You see, witnessing Kenny preaching, all I could think of was, "God, you have brought us so far!!"

No one could possibly know the thousands of hours of work that has gone into Kenny becoming who he is today.  Hard work on his part, hard work on mine and Dominick's, extraordinary patience from his siblings, hard work beyond description.

How could I sit there and not see the young man before us, at 19 years old, who  was virtually illiterate 7 years ago with almost no hope of ever becoming literate?  Couldn't read a lick, had given up on himself, school was becoming a farce because he was growing further and further behind.  I do not exaggerate, his reading level was below first grade, he couldn't spell, couldn't write, could barely read sight words worked on for three years.  Three full phonics and reading programs were used to help him get where he is, no summers off from school for the first 8 years of homeschooling, no giving in and giving up.

How could anyone listening to him have any clue the thousands upon thousands of times I have corrected his speech?  Botched cleft palate repairs in Kyrgyzstan led to multiple additional surgeries, with more anticipated as he still has a large fistula that needs to be closed (hole in his hard palate).  Day after day, hour after hour, reminding him not to drop sounds at the ends of words, to articulate as clearly as possible, to think about sound formation.  Graciously, he accepts correction, tries again, grins and moves on.

How could anyone know the anger and frustration at IEP meetings at school when I was told that essentially, I was expecting too much, that my son had an 82 IQ, and I just needed to maybe begin to accept that.  Yet when I looked at every one of those teachers and specialists around the table and asked, "You all know Kenny, does he strike you as a child with an 82 IQ?  I don't buy it, and neither do you.  There is something wrong, and none of us can figure it out, but he doesn't present at ALL as a child with an 82 IQ and you know it!" and slowly they all nodded and agreed, having no clue any better than I did what was wrong with this obviously bright boy who just couldn't seem to learn.  There are few who can understand the pain that comes with being told your child is hopelessly intellectually disabled, and knowing in your heart that simply isn't true, and you are not living in denial because all signs point to something else.

How could anyone watching him in front of the congregation know how many physical tics we have eliminated (and still do, ALL the time), odd actions including weird body movements, picking and touching things constantly, as well as random words that become "stuck" and can't get removed from his brain and vocabulary until we work for weeks to shove them out of his head.  They still come with frequency, but we tackle them quickly so they don't embed...so he can present as normally as possible to the world.  How could they know how often we work on hygiene, regularly reminding him to wipe his mouth after eating, and checking to make sure he is wearing appropriate clothing for the weather because he simply doesn't have a brain that figures that out.

How could anyone possibly understand the unique challenge of having speech and language disorders that all work together to make learning not just far more than "difficult", but darned near impossible.  Auditory processing issues plague him and as we later learned he only processes about 60% of what he hears correctly.  That makes speech work so much harder when you aren't hearing the sound correctly in the first place and are expected to replicate it with a mouth that is ever changing.  When you can't discern P's from B's, G's from K's, how much more difficult is phonics?

How could those who haven't been part of our lives for years recognize that for Kenny to be able write and have a higher level vocabulary we have had to repeat...and repeat...and repeat...and repeat...and repeat...until we are just as sick of it as you are reading this sentence.  Information stored is lost so often due to his poor memory function and word recall.  Oh my, how MANY times have I repeated learned material so it can be reabsorbed after being forgotten time and time again?

How could those listening to his well planned sermon, written with no help at all, possibly fathom the utter and complete lack of logic that comes with Fetal Alcohol Spectrum Disorder and how daily dedicated work in this area has led to improvements no one would have ever thought possible.  At one time completely nonsensical, Kenny now has a well honed ability to think critically, to analyze, and to place things in logical sequence, all of which was something we highly doubted we would ever be able to help him with, but we kept trying.

How could Kenny's suffering ever be understood as day after day he would cry, wondering what was wrong with him, beating himself on his head with his fists saying he just didn't know why his brain didn't work right.  How could anyone look at this composed, confident young man and have any sense at all of how close a couple of years ago we came to the deepest darkest depression one might imagine as he accepted how his life might never be what he would have hoped?  How could anyone know the fears we held, the sleepless nights of concern, the wondering about his future as we began to recognize he really and truly will never be independent.

Oh, but in Kenny's own words, that may all be true, but he is so much MORE.  And what no one else will ever grasp is that the most important work we have done with him is to help him see possibility, to grab hold of hope, to see himself as MORE.  Nothing has changed, a few of his abilities have improved but he will still never live unassisted.  He struggles to remember the simplest tasks like how to address an envelope correctly, making choices like what flavor drinks to select for himself are overwhelming, and loud noises can send him into a tailspin where his brain almost can't function at all. He will never find his way around town...heck, even around Walmart!  He will never drive, never be able to be alone and not risk burning the house down, and he will never have a brain that performs consistently enough at multi-tasking to ever trust.

But he is MORE, and I have spent countless hours in loving conversation as he works through grief, loss, and accepts the limitations he has.  I have encouraged, pointed toward real strengths, nudged, listened, cried with, and most importantly, prayed for him to see his worth.

No, what people didn't know...couldn't possibly know...was that sitting there, tears streaming, memories flitting, what I was thinking was:

"Thank you, God!"

Kenny is a miracle.  He is proof of what God's love can do.  He is evidence that God's presence in a family can change everything.  It helps with the patience necessary, it helps with the compassion that leads to understanding, it helps keep us centered and balanced.  It helps us see "more" when others urge you to give up.  It helps us resist when the world's values creep in and we feel judged for parenting differently.  God's presence helps us laugh through tears, and live authentically.

Pride?  Oh, maybe there was a little.  There was also a hefty dose of grief, as one could see in those moments all that might have been...all that we will continue to work toward...and yet all that in reality may not be able to be possible.  We don't give up though, but the grief is real, my friends.

But it was largely gratitude I was feeling.  Grateful to be offered the chance to be his mom, grateful for every challenging moment, grateful for the incredible love he offers me, grateful for the ability to see the world differently because he is part of our family.  Grateful God keeps us hanging in there even when our souls are weary.  Grateful for this wonderful, wacky, wild life we lead as LaJoy's, for this life is MORE.

In unedited form, here is Kenny's sermon:

 More

Our tongues play a critical and profound role in our lives and within our society, with our tongues we have created words and adjectives.  Dictionary.com defines “Adjectives as terms and words that impose limits on nouns.” and most adjectives have counterparts or antonyms. For good there is bad, for success there is failure, and for saint there is sinner. We believe for there to be good there must be a bad, for someone to succeed there must be someone who has failed, and for someone to be a saint there must be someone who is a sinner. Sadly, that is  how we have chosen to define those around us and how we have defined ourselves, like James warns us, the tongue can create a whole world of wickedness. The key part there is that we have used our tongues to define others and ourselves in these cages of adjectives, but this is not how God defines us. 

In our reading from Mark, Jesus asks who do people think he is, or another way of saying it is, what name do people define me as? Jesus knows that each of the names or adjectives thrown out can and are correct about him, but that all of them are far too limiting of who he really is. In Exodus 3:14 God is described as “I am who I am”, in our Judeo-Christian  tradition, we refer to God as the Great I Am, so Jesus is the great I am. In the beginning of the Gospel of John, Jesus is referred to as the Word. To take a page from the eastern philosophy of Taoism, in the first verse of the Tao Te Ching, it explains that to name the Tao is to limit the Tao, so to name God is to also limit God. To name ourselves is to limit our whole God given selves. 

Now that I have admonished how “evil” it is to name God and to name ourselves, I am turning the script on its head to proclaim that there is a name for God, that I do love to use. Some time ago I learned somewhere to refer to God as the MORE. The word more didn't limit God, because God is always More than we can ever imagine. God's love is always More than we can understand, God's grace is always More than we can ever calculate, God's faith in us is always More than the faith we have in ourselves, and the resurrection of Christ shows us that God is More then death. 

Since we are from God and are of God, we are also More than just successes or failures, More than just talented or disabled, More than just saints or sinners. When we are who we are meant to be and if we are willing to live into our God given selves, we reflect the More! 

The reason I love using the word More to describe God and see it as a reflection of us, is because it does not deny a single part of us, it just means there is More than just that. I am disabled, but I am More than that. I am a Christian, but I am More than that. I am a sinner, but I am More than that.  This goes for all of us, my Mom is a fantastic mom and she works tirelessly to be the best mom she can be, but Cindy LaJoy  is also More than just a mom. My Dad is an entrepreneur and has run multiple successful businesses, including our  current liquor store, which he does a phenomenal job at, but Dominick LaJoy is More than just an entrepreneur. Our pastor is a terrific one, who has metaphorically and literally brought new life into this church, but Pastor Kaila is More than just a pastor. 

No amount of adjectives could ever encompass the entirety of who we are, for we are always More. The journey of self exploration is a never ending quest, because when we discover a new part of ourselves there is still More and there will forever be More. This is why God never gives up on us because God knows we can always be More. 

Question Time

What makes you More? What is something that people don't know about you that makes you More? 

During the Houston Trip, I was given the great privilege to hear from the Rev. Nadia Bolz-Weber, in her speech she explained that there is no ideal self and that our attempts at self improvement are futile and in vain. Her proclamation that night was that God loves us just the way we are and we should too, though I understood what she was trying to convey, a part of me felt like her message was permission giving for us to be our lesser selves and that there were no real world consequences for it. Very Truly I tell you, the message of the More fully embraces the reality that we are flawed human beings, that let our ego driven selves dictate our actions, but God is constantly calling us to be More than our lesser ego driven selves, and to rise above it. We are always called to be More in our relationships with one another, we are always called to be More in our community, we are always called to be More than our lesser selves. 

  But to be the More in our world takes courage!  Sometimes it is easier to stay in our ego built adjectival cages, because we buy into the lie that we are above others and that our ego driven actions don't have disastrous consequences for those around us and to ourselves. Sometimes it is easier to stay within our adjectival cages that were built on lies that we are less then, but being More demands that we cannot use our cages to deflect the responsibility we have to one another and to ourselves. When I was diagnosed with Fetal Alcohol Spectrum Disorder, I realized that the future I had envisioned for myself was no longer attainable, so I used my disability to justify that I no longer needed to work towards my future, whatever it would be. I tried to use my disability as an excuse that I no longer had the obligation to be More. Oh, how wrong I was, I realized that even though I could not live into the future, I had pictured, it didn't mean that I couldn't live into the future that God had envisioned for me, but the only way I can reach the fantastic and glorious future that God has planned for me, is by me challenging myself to once again be More. 
 
It takes courage to see the More in others because it means they are more than just their race, gender, or class. It means that neighbor of ours who wakes up six in the morning to mow his grass is More than just a jerk who is inconsiderate of people's sleep, it means that classmate of ours who is always talking and most of the time for no reason (referring to myself here) is More than just a blabbermouth who loves to hear himself talk, it means that political candidate or that person in office who we despise is More than just the caricature we have defined them to be. That same neighbor could be the person who mows your lawn while you are gone or are too sick to do it, that same babbler mouth could be the person who one day finally learns the enormous power that listening has, that politician in power could be the same person who could defy his colleagues to push a policy through that puts the needs of the common citizen first. These three people and all of us have the capacity to be so much More. 
 
It takes courage, the most amount of courage in my opinion, to realize that God, sees More than just our mistakes, our brokenness, our lesser selves. To God we are like an unfinished puzzle, God sees our puzzle pieces that are good and bad, sees our puzzle pieces that demonstrate times in our lives that were full of success and failures, sees our puzzles pieces that display our moments of despair and our moments of hope and God also sees past them to all the puzzle pieces that are still missing and knows there are still More. God sees the More that we can become if only we break through our own doubts and fears and stop listening to a world that demands we conform into its adjectival prisons. 

In all, it takes courage to break free from own adjectival cages, it takes courage for us to forgive others and to set them free from the adjectival cages we have put them in our minds, and it takes courage for us to realize that in-spite of our lowest lows and highest highs God, the More, understands that we are always More. Let this church be the place where we can set ourselves and each other free from these cages, let this church be the place where we are More. Amen.

Be the Rainbow in Someone's Cloud - The Dove Challenge!

During a long drive, my best friend, Candi, and I were enjoying a little treat in the midst of a very challenging summer and were popping Dove chocolates one after the other.  We were using them as tasty stress relievers, and believe it or not, it worked!  As we were nibbling, we noticed the quotes, and began reading them aloud, saying, “Some of these would make great sermon titles!” and right then and there, the Fall Sermon Writing Challenge was born.  We took a photograph of five different wrappers, and threw down the gauntlet towards one another.  While she is a pastor and preaches every single Sunday, I am not, so I agreed to write a blog post each week using a Dove wrapper quote to guide my writing, and she would use the same one to craft her sermon for that Sunday.

Interestingly, the Sunday we had first agreed on for our challenge, as well as the last one, were Sunday's that I was unexpectedly called on to preach...the sort of Divine Coincidence that couldn't have been manipulated into being if we had tried.  I love these delightful coincidences!  Our first week was titled, "The Magic is in the Mess" and was so much fun to write, because you ask yourself, "How can I take a trite, pithy quote and turn it into something deeper and more meaningful?" 

Our second wrapper of chocolaty goodness had the quote, "Be the Rainbow in Someone's Cloud"...hmmm...how do we think about this one from a more theological perspective?  I have been pondering this one all week, and just today realized that there, within this little quote, really we find something quite profound.  Sure, there is the sweet meaning of brightening someone's day, but we are called on to do far more than that.

People view the rainbow in a variety of ways and often derive great meaning from it.  There has long been a spiritual symbolism to the image of the swathe of

color:  the fanciful fables of leprechaun's and overflowing pots of gold, a close encounter with the spirit (whatever that spirit may be for any individual), it can be understood to be a sign of hope, and the colors as chakras are thought to be the energy centers through which healing can be called upon.  The double rainbow is even more mystical, with plenty of people believing it is a sign of great good fortune heading their way! 

Even those who are secular or atheist know the Biblical story, if not the theology, of Noah and the Ark.  Here is the actual Scripture passage, if you would be so kind as to wade through it quickly for me:  And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come:  I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth.  Whenever I bring clouds over the earth and the rainbow appears in the clouds,  I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.” (NIV)

Now, if you ask your friends or family, what the rainbow means theologically speaking, most would reply something along the lines of this:

"It is God's promise to mankind to never flood the earth again."

And they would be correct!  But wait...there's more. 

This isn't just about a promise God makes to the people of God, it is very clearly stated that the rainbow will serve to remind God of the promise made!  That lovely prismatic arc we all pause to ooh and ahh over wasn't really intended for us to know and trust in the promise, though it does serve that purpose, but instead it was meant as a reminder to God!  Check the language again, as God speaks, "Whenever I bring clouds over the earth and the rainbow appears in the clouds,  I will remember my covenant between me and you..." and "I will see it and remember the everlasting covenant..."

God initiates the covenant, and then creates a symbol as a reminder not as much for us, but for God.  This is important, as the wording could have easily been about "a promise to you, my people" which a covenant indeed is, but God wanted to be reminded...to never forget...to ensure that not only could we trust in the covenant, but that God would have a tangible reminder of the promise made...of the damage wrought...of the death of so many living things.  Our Creator wanted a concrete and visible reminder to never be the Destroyer in that all-encompassing way again!

I bet you never thought about God needing a reminder to be good, did you?  And yet, this is the perfect example for us, as we are made in the image of God, and know we need regular reminders in all kinds of forms to be creators and not destroyers.

Being a "rainbow in someone's cloud" is about far more than casually bringing a little sunshine to someone who is having a rough time.  It is not that easy, nor is it in the least casual.  Being the rainbow in someone's cloud requires a commitment from us, and the willingness to accept and respond to reminders of that commitment.  If we are to follow in God's example, that call to be a rainbow is for a lifetime, it is asking of us to be actively and regularly faithful to our promises to others to be there for them!!  After all, God isn't a fair-weather presence, and the covenant with us is "...for all generations to come." Therefore, we can't just occasionally decide to live into our own rainbow covenant with others, but we must do so for always.

And it is about being a creator of another kind, rather than a destroyer in the lives we touch.  We are the bringers of practical help as we feed and clothe those around us in need, as we are encouragers of change when needed with addictions or behaviors that are damaging, and as we offer love and hope to all, regardless of how different from us they may be.  After all, God's rainbow promise didn't have any caveat's, and neither should ours.  God didn't say, "Well, if y'all are good and don't anger me, I will covenant with you to never flood you out again."  Rather, it was stated unequivocally, without reservation..."for all generations to come." 

As this past week was the anniversary of September 11th, there were calls throughout America to "Never Forget".  Images that are far less colorful and far more painful than the beauty of a rainbow were posted throughout social media, in public places, and were part of newscasts as memories were shared.  The twin towers were the replacement for the rainbow, each reaching out heavenward until they collapsed horrifyingly to the ground.  How can any of us forget that image?  Those who were presented were impacted in ways we can't fathom, and the rest of America watched in complete and utter disbelief.

Never forget...but what is it that we are never to forget? 

Is it that we ought to always remember our enemy who attacked us? 

Are we to always remember the tragedy of destruction and loss of life?

Or perhaps, as we are shown by example from the God we claim to follow and who also wanted a tangible reminder, maybe we are to remember that we should vehemently reject being destroyers of "every living creature" for "all generations to come."  Oh, I know, that seems simplistic, it seems pacifist, it seems totally ridiculous to those who seek an eye for an eye, who truly believe that there is a time and a place where destruction is necessary.  I understand this, and will never say my own understandings or perspectives are "the" right ones.  But I think that it is worthy of consideration, that we thoughtfully, humbly look to the reminders we call upon to help us be creators and not destroyers. 

After all, if God needs an iconic reminder to be a creator and not a destroyer, I don't think it is too far of a reach to say we mere humans might need that same reminder, too.

So, go be a rainbow in someone's cloud, and never forget, that rainbow is really more about calling yourself into account than it is about being a part-time do-gooder.  It is far, far more intentional and deliberate than that.  Being that rainbow is about keeping a promise to yourself, just as much as it is about keeping a promise to others.

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!!

How Do You Make It Through?

A couple of weeks ago, I received a question in our Blue Collar Homeschool group that I thought was worthy of more thought and decided to write a blog post about it, recognizing that many of my readers find themselves in similar circumstances, or will as their children mature.  In order to protect the identity of the poster, I am not sharing her actual post, but am creating one that is the essence of what she was asking:

"I have just discovered our young adult child has autism, and it feels like we are starting all over again despite the fact they have graduated.  I am wondering what YOU do for your own mental health in dealing with your children's struggles?  My child is doing better because they have answers, however I am a complete wreck and really have no one to help me.  The fact that my child is over 18 makes it all more difficult.  I know this isn't all about me, but watching my child struggle is breaks my heart.  Do you have any advice?"

First of all, I wish I had this figured out.  People look at kids our kids' ages, and think it is sort of "done", and with invisible disabilities no one understands how much care still needs to be offered, how much guidance is required to keep our kids safe and healthy.  So you end up dealing not only with the disability every single day, but with the judgment of others, and the natural defensiveness that arises when those comments are made by others.  They fail to understand that one of the main reasons our kids don't look like they have a disability is because of the very things they are criticizing!  Trust me, I hear story after story, speak to mom after mom on a weekly basis whose kid isn't making it, and the heartbreak is boundless, the frustration is endless, and the compassion from outsiders is non-existent. 

Watching the struggle our kids experience, witnessing the hopelessness that enters sometimes because life isn't ever going to be quite what they envisioned, and dealing with the emotional onslaught of another can throw moms waaaaaaay off course.  It should, if we are loving as deeply as we possibly can, and are invested whole-heartedly.

Then, we read all about "self-care" and we laugh bitterly, because how in the world do you actually make that happen???  We KNOW we need to pay attention to our own needs, but sometimes there simply seems no way to make that happen in any realistic way.  Throw in homeschooling responsibilities and 24/7 relationship with your disabled child with little real break, and it can be isolating in ways even parents of public school attending special needs kids can't really understand.  I have been parenting in the special needs trenches for 15 years now, and all of our five children/young adults have special needs...some quite serious.  I have gone through the incredibly painful rejection of Reactive Attachment Disorder and the years long subsequent anxiety issues that have accompanied it though he looks healed.  I have held kids sobbing from PTSD (and still do), fought for diagnosis of virtually every single disability including processing disorders, Auditory Processing Disorder, and Fetal Alcohol Spectrum Disorder.  Not a single day goes by, literally, where we don't find ourselves working through some issue related to disability. 

The intensity of thought required to adapt learning environments, teach differently, bring in appropriate visual supports, explain something four different ways until the "aha" occurs, and much more is more mentally exhausting than I could ever explain...or probably even know myself.  The repetition as brains lose information is maddening.  But it is the emotional pain that is the hardest to deal with, it is what rips my soul apart.  I have absorbed so much anguish over the years, that it often feels as if I have an imprint of it that is visible to the world.  When you love so deeply, it costs you dearly.  You also gain immeasurably, but there is no way anyone could ever truly grasp what it feels like to live from one surgery to the next, one emotional breakthrough to the next, one new heartbreaking awareness to the next. 

You see, adopted or not, I see only another part of myself staring back at me with tears in their eyes.  I know others recognize our differences, they can visibly see that I didn't give birth to my beautiful five...but my heart doesn't seem to know this.  There is no distance separating us, there is no "other", only my heart walking around in another body in the world. 

So, how do I keep from being a complete wreck??  I try to be only a partial wreck.  I am not laughing as I say that, for there is no way I can be unchanged, or unaffected.  I will never be the "me" I used to be, so I strive to be less of a wreck than I know I could allow myself to slip into being.  Some days that is far easier than others.  In a practical sense, here are a few things that have helped me over the years:

1)  Reach out.  Don't hide it.  There is no shame, not ever.  When we wall up ourselves due to trying to "pass" as normal, we harm ourselves, and we cut ourselves off from God's love shared with us through the presence and understanding of a precious few folks who care, and want to be there for us.  We didn't "cause" any of what we are dealing with, neither did our kids, and we will never pull back from bringing all of who we are to relationships...faults, disabilities, and all.  The effort to hide it, down play it, or ignore it is simply too darned much to pull off when in the trenches this long, and it just isn't worth it.

2)  I have developed a new phrase over this summer, and that is "take it in dribs and drabs".  It is likely to be a looong time before I have the time for myself that I might crave once in awhile.  So, instead, I am going to be looking for pockets of time, short spurts where I can focus on any small thing just for me.  I realized that I am putting that off because there never seems to be quite enough time to make it "worth it" and really, it is "worth it" even if it is only a 15 minute stretch, because that is better than nothing.

3)  Find a community where I can share my own lived experience with people who are living a similar experience.  The internet makes this possible in a concrete way.  Social media has its drawbacks, for certain, but it also has enormous pluses.  I only know two families in "real life" who have kids with FASD, and with whom I can speak honestly and openly about the challenges we face.  The head nods are worth their weight in gold!!  But it isn't enough.  In the virtual world, I can connect with hundreds of families who I can bounce ideas off of, find true understanding, and have unguarded conversations with.  This also helps me feel as if I am not going crazy when unusual things happen with our kids, as there is always someone somewhere who can chime in and say, "Oh yeah!  Us too!" and it is amazing how much of a relief hearing those simple words can be.  It has saved me, it has informed me, it has carried me through very difficult times.

4)  Get Away.  I mean it...GET AWAY.  You have to for your own sanity.  I realized about 2 or 3 years ago that things were not getting easier, they were growing more exhausting, more challenging, and heavier as the future loomed and all of us were scared about what may or may not happen.  Honestly, daily we are there right now, and it is a very heavy load to carry.  In our case, the mental toll that being the external brain for three others takes is staggering.  I seldom stop to think about it because I have grown into it, but trust me, I do far more day to day thinking of general things than just about anyone I know, because my beloveds can't on any given day...or they need help recalling...or I need to repeat it...or ask for clarification because reasoning is so far off.  Being a homeschooling mom, as the mom is who wrote the question, means always being on 24/7. 

If you took someone caring for an Alzheimer's patient and told them to be "on" 24/7 for years on end, you would realize they needed a break regularly, but no one sees that need for moms like myself or my friend who wrote the question, and yet it IS similar, and in my case, times three!  Dominick and I realized awhile back that I can not keep going if I don't get out of my "work place", which is my home.  He gets to leave work and come home to a place of rest, and I never get to "leave work".  So he has blessed me with complete understanding and we came up with a plan for me to get completely away four times a year, and for more than a day or two, because you can't drop off this amount of stress in a day or two.  By about day four I am finally able to let go of all the pent up emotions, the concerns that are so real, the being on guard to keep people safe and secure.  We haven't quite hit it, and real life has interfered in unavoidable ways, but the truth is, this is likely to be a lifetime of caretaking to some degree for me, and I need to establish patterns now that allow me to be my best self with our family. 

It only took me 15 years to figure out the necessity of this and not feel guilty about it. 

Well...I still feel guilty, who am I fooling?  But I get that I need it.

5)  Cry.  A lot.  As needed.  I don't walk around near tears all day, but when it gets to be too much, I don't hesitate to let them flow.  My kids need to know that I hurt for them deeply, it has connected us for them to see my own compassion and pain felt for their circumstances.  It has taught them that there is no shame in letting the pain out, and often it really helps!  When it gets to be too much, when I am frustrated because I can't "fix" enough, when I am so very scared about their future and how we can best provide for them long term, I cry. 

6)  Have faith.  For me, it is in God of the Christian persuasion, for some it might be taking to heart the Buddha's teachings, for others it might be meditation to bring one into connection with the power of the universe.  I can't imagine making it through all of this without someplace to take my brokenness.  I can't imagine making it without the place to put the care for my children into someone/something else's hands.  It gives me a respite, even if only temporarily but in that moment it surely helps.

7)  Find a friend...one who "gets it", who can talk you down from your craziness, one who will cry with you, care with you, and get ticked off with you when others treat you or yours badly.  I am blessed to have one, but it took years to find her, and the fact she too deals with disability in her life helps her really understand...and it helps me feel less needy because when things are hard I can be there for her, as well.

8)   Use humor!  When it is so bad you want to scream, find a way to laugh about it!  I know this doesn't always work, but we have laughed over "brain misfires" here unabashedly.  To the outside ear, we can sound callous, but to those of us in the inner circle of our family, it is how we best deal with what can't be changed...we sometimes elect to just let it be and find the humor in it.  We have running jokes over misspoken phrases, we gently (and I do mean gently or it goes too far) tease over actions that were actually hilarious if they didn't point so strongly to disabilities.  We just do our best to take it in stride on the days we can, and it helps defuse things an awful lot.

9)  Grace Upon Grace...a phrase we picked up recently from our pastor fits beautifully in our family.  We offer it to one another daily...hourly...minute by minute.  We practice it concretely.  We know people in our family will make mistakes that can be a pain to fix, but we offer grace as we realize they don't WANT to do that.  My kids offer me grace regularly when I simply don't get what they are thinking or saying, even though it makes perfect sense to them...but not to any normally thinking person.  Their kindness and sensitivity toward me and how hard it can be for me to be their facilitator is a true gift of compassion, and the very picture of grace.

10)  Let It Go.  Sing it loud, drive your family crazy, play it in the car at top volume!!!

These may or may not help anyone reading this, but it is how we deal with all that comes with living an unusual life together.  As the question above stated, I get that it isn't "all about me", but for this particular post, perhaps it needs to be...because I always need the reminders as well of how best to deal with the complicated dynamic we have.

And even when we are not "doing well", in some ways, we still are, because we love one another, always.   :-)

Summer's End

This summer surely was an unusual one for our family, but we managed to squeeze in some wonderful times together even as we dealt with difficult situations. We spent our last week before school starts in South Fork, Colorado, where we rented a little cabin...well, OK, with 9 of us it wasn't exactly little and it is actually hard to find one big enough for us and friends!  It rained every day, but I have decided that our lives right now mean we chase fun and family time in dribs and drabs, so that was just fine and led to great afternoons playing games, watching movies (something we rarely do at home so it is a treat!) and having long, deep conversations.  Our time together is just so special, it is hard to describe.  It may not seem that way to others, and I get that, but for us, we revel in it!  Here are a few pics of our summer's end:

Do you think we have enough chips and dip for everyone for five days?!?!?!
Good grief!

7 Twin Beds for a Dorm upstairs!  Perfect for the kids :-)

We read (Kenny is reading Pew to Pulpit to prepare for sermon writing!)

Played hoops...

Laughed over a new game called Linkee...

We did puzzles...

Played Monopoly...

Played a fierce couple of rounds of Qwirkle...

Had Matt as an impressive Poker Dealer...

We geocached...

And Geocached...

And Geocached!!

And we laughed, oh how we laughed!  And oh, how we needed it!

And we loved.  We just hung out and loved each other, enjoyed one another's company, delighted in having no schedule, no interference, no real "work".

We celebrated birthdays, Olesya's and mine, and she made me a beautiful special birthday cake designed to look like mosaic pieces dropped on top, as I am now beginning to learn how to create mosaics!

Olesya turned 19 years old :-)

I turned...um...a few years older than Olesya ;-)  (52!)

It was a lovely end to the summer, and fall is already feeling as if it is upon us, much to my relief.  My favorite time of year is here!  

We all grew a lot this summer in all kinds of ways.  It was far different than we planned, but it ended on a wonderful note!