Friday, October 27, 2017

Giving Birth!

I have a new baby!  No, it is not an animal, and no, it is not another child (though if I were a wee bit younger, you could bet it would be!).  It has kept me incredibly busy and is surprising me, frankly.

In 2013, I started a web site that was really a place to empty my favorites folder into, and I figured I might as well do it publicly as others might find the information helpful.  So, I listed it all, then promptly forgot about it.  By that, I mean I truly didn't give it another thought and hadn't visited the site in four years. 

This past winter I received a couple emails from moms who had discovered some broken links.  I sort of ignored it, as honestly, my head was nowhere near being in a place to give that any more thought than I had the prior four years!!  Just too much going on personally for me.  Late this summer, I felt a strong urge to see what I might be able to do with it.  I don't know why, other than God nudged it I guess.  I tend to say "yes" when God asks things of me, because it leads me on unexpected extraordinary adventures. 

My web site is called Blue Collar Homeschool and it contains a list of resources for families who are homeschooling kids who are likely to be headed toward Blue Collar know, Vocational or Trade School bound learners.  In the homeschooling arena, there is little shared about kids who are not college bound, and few resources available.  I feel this is a shame, not just for homeschoolers but in public schools as well, so I wanted to share what I had found for our own kids, some of whom are not likely to go to college.  I wanted to create a place on Facebook that partnered with the web site where we could share about our very average kids doing the things they love, not prepping for SAT's or taking AP classes.  I guess I really wanted a place to celebrate those incredible accomplishments of kids who are not college bound, but who have enormous talents.  I also wanted a place for conversation about education in general, about cool trade opportunities, and about teaching kids practical skills and entrepreneurship.

I spent many hours checking every link, updating it a bit, and creating a logo. All of this takes me far more time because I am clueless about website design, even with "easy" interfaces!  I have a blog there I have been writing for as well, which is why the blog here has gotten short shrift the past couple of weeks.  I also got the Facebook group up and running and started planning content for it as best I could, not having a clue what I was doing!  I had no idea what to expect, or if I would ever get any members at all, but figured it might be nice to have that as an extension of the blog.
  I will readily admit it is a dull, unexciting web site, but it holds links to resources, and

Somehow, I stumbled on something with this endeavor, and it has stunned me, actually.  Our Facebook group has almost 350 members in less than 2 months!  It is easy to see how this ministry of a sort could turn into a full time volunteer gig.  What warms my heart is how many wonderful comments we have already had about how happy others are to find this "place".  The sharing happening there is awesome, and the community gradually forming is something that clearly we all needed.  That really matters to me, for I have always desired that those around me never feel alone if I can do anything about it.  Though these are all strangers, I am touched that this silly idea has blossomed so quickly and has become a tool for very real connection.

I have no idea where this little adventure will lead, but I wanted to share it all with you.  I will still be blogging regularly here, but am also honing my skills with a different sort of writing over at "BCH" as I am abbreviating it.  I am intrigued, challenged, and learning a lot as I work on this little project.  I have never written a lot here about homeschooling as a main topic, but it does get woven throughout as a natural part of our lives.  Many blogger moms get creative and really turn homeschooling blogs into money makers.  I have no desire to do that, though many might find that foolish.  Corny as it sounds, I just want to help others if I can, share what I can, and let the Spirit do with it what it will. 

So, from time to time I may be mentioning Blue Collar Homeschool here, and I wanted you to understand what I was talking about!  And for you praying folk, could I ask for prayers for this group and web site to be a place where relationships are formed that really matter, that hearts feel connected, and that needs are met in terms of access to ideas and resources.

Saturday, October 21, 2017

We Will All Make It...Somehow

He sits there, eyes rapidly blinking, Adam's apple bobbing, unable to utter a sound.  Something is misfiring in his brain, and darned if we can figure it out.  Matthew is struggling recently with communication in certain moments, and we are not quite sure what is happening, but we have seen it in the past once in a great while.  In moments of stress, it is as if everything shuts down, his processing speed slows to a crawl, and nothing can be accessed.

Recently we have had this happen a couple of times, and it has been a little scary for both of us.  This last time a week ago, there were simple questions being asked that made him feel "put on the spot" just a bit, and we saw this shut down.  Rather than let it go, and knowing that with both of us being frustrated we needed to just cool down a moment, I asked him to sit at the table with me and talk this through.  He had misinterpreted my questions as accusations, and I was soon to really understand why...

"So, can you tell me what is going on?", I asked, hoping we could get to the bottom of this.

Finally able to speak, and frustrated...and probably a bit angry with me...he said, "I don't know!  It is like I literally don't understand what you are saying, and it doesn't matter how you word it!"

This simple question about internet trouble in our home had turned into something much different.

I begin to describe what I see, "You look totally blank when this happens, as if you are suddenly not even here, like you are flat.  But what you need to know is that it makes it look to the outside like you are trying hard to come up with an excuse or a quick lie to get out of something.  I know that's not the case, but others will not understand this, but YOU need to understand how they may interpret this."

"That's not IT!", he exclaimed, crushed.

And then, it was clear what was needed, and I let the tears start showing in my eyes, and then I told him through my own sobs, "Matt, I am so sorry this happens.  I know how hard it must be and you have no control over it.  I hate that you have to struggle so much!!  I'd give anything to fix this, but I can't." and that was all it took, and holding one another we gave in to the grief we had yet to really ever express but that had been building.  This is a special sort of grief, the kind of which few ever experience but that seems to be my lot in life...the grieving that occurs when bright brains don't work...can't work...despite the best efforts. 

One of the big reasons we decided to homeschool was that Matt's needs weren't being met in public school.  Through a public-homeschool alternative program we later utilized he was tested and found to be both gifted and learning disabled with Dysgraphia which is a writing disability, something that took us awhile to figure out.  What we were told at the time was that he had "maxed out" the test for spatial reasoning, which wasn't a surprise for us, and was highly gifted in a couple of areas, by 5th grade he was reading at a 10th grade level as tested, hence the reason he no longer could fit in a traditional class setting. 

But when we were told about his Dysgraphia, we were also told that he had an extremely slow processing speed.  This was not something we had anticipated, though it did answer some unasked questions.  We have always said Matt has one speed, moderately slow, and even physically if there was a fire in the house he would really be unable to move quickly.  We just thought it was part of his nature, not a real disability or issue, but more that he was one of those slower more methodical people we all encounter in life.  He was so intelligent, that we never really gave "speed" of thinking much thought, and always accepted it as part of who Matt was and never got angry with him when he simply walked through the world at half speed.

I stood there, holding him close, his sobs and mine intermingling.  I am so tired of the suffering of my kids, I can't begin to tell you.  Just when you think things are moving along well, something else comes along and bites us in the behind.  We seem to never be able to escape their pasts, their beginnings that shaped them into the wonderfully resilient, kind young adults they are becoming but also caused irreparable harm. As their mom, I just want it all to be easier, even if I can see how it has also helped them have more empathy and more understanding. 

He apologized for taking his frustration out on me, and I accepted and told him that I needed to ask him for lots of grace, as I too am at a loss.  Every single disability our kids have has been diagnosed because I took them to specialists for testing to confirm what I had researched and thought was possibly what we were dealing with, even to the point of taking Kenny to the University of Washington's Fetal Alcohol clinic.  I have had to dig, and guess, and tap my internet friends for ideas, and then beg for testing to confirm a suspected diagnosis...basically, I have sort of had to be a neurologist and special ed teacher all in one, because the diagnosis is only the first step...then, how do you best teach it?  And Dominick totally "gets" this is why I have thousands of hours logged on the internet...

And that doesn't include the role as therapist for so much heartbreak.

I asked Matt to work with me and not assume I was going to accuse him of something.  I reminded him I was doing my very best to guess sometimes if he was "having a moment" or if he was being a typical teen who, believe it or not, is NOT totally perfect.  Well, at least not all the time ;-)  I explained that he needed grace and kindness from me, and I needed it from him as well, and that it was really important for him to not view my questions as "interrogation" when he felt blameless, and instead view them as attempts to figure out what is causing the glitch, and where/when exactly it is coming into play.

We held hands, and we talked briefly about how having a slow processing speed does not mean "stupid", and that I would never, ever think that of him, but I knew at times he might be scared others would thinks so if certain things took him longer than others.  I explained that mostly, people would think that he was a thoughtful guy who didn't throw things out off the cuff, but that if he was asked a direct question and he "blanked out", that the look he gave others and the lack of response led them to think he might be trying to come up with an excuse.  I also explained how I have accommodated his slower processing speed at home for years, by giving him the chance to wait until all the others had answered the question asked, then allowing him to contribute last.  We talked about self-advocacy, and stopping in the moment to explain to others that he needed a moment longer to think because his brain moves at a slower speed sometimes.  We teased a little, wiped our tears, and knew we now had more to think about as we contemplate his future.

Driving is proving challenging for both Angela and Matt for similar reasons, it seems, and it is this slow processing speed that is getting in the way.  For Angela, she can hear my instructions clearly and interpret them, but her brain simply can  not act fast enough based upon the instructions in situations where she lacks confidence.  Believe it or not, I am teaching them all the recorder (The little instrument, yes, you can have sympathy for me now) and I am seeing it play out even there as she struggles far more than the other kids to make her hands move when she feels pressured to "keep up" or make her body do something when she has to think hard about it.  Behind the wheel, what comes naturally for many of us...things like being reasonably centered in the lane, or saying "stop here" and she can't get the instruction interpreted fast enough and then think about her foot then move her foot onto the brake peddle.  Nothing is intuitive.

With Matt, he is also struggling with processing speed, but for him it is anxiousness at doing a new task almost shutting off his ability to comprehend the words I am saying.  No joke, one time we were out practicing in a cemetery and he is unable to turn 5 mph...starting too late, not turning the steering wheel enough, etc.  I am not a "yeller" so we are always calm about it, but I said with growing urgency, "Turn, turn, TURN..." and he was able to brake, but then looked at me and I asked, "Why didn't you turn more?" and again he told me, "I literally didn't understand what you meant..." and this was the first time I think his awareness grew around his processing speed being an issue, and he was clearly a little scared.  "What else would you have me say, Matt?  What would help?  I don't know what would help..." and we determined that using as little language as possible but showing him would help.  So, I got out of the car, switched sides, and proceeded to take tons of turns with him watching, I went very slowly and explained with as few words as possible and breaking it down into steps where to begin the turn, how far to turn the wheel, etc.  Then he was more able to do so when we changed seats again.

Angela and I talked a lot about driving and other things when I took her out this week, and what others don't understand is how embarrassing it can be to struggle to do things others find pretty easy.  When your brain doesn't take in or work with information the same as everyone else's, you find that hard to explain.

And yet I am so proud of these two young adults!!  They are patient with me and themselves, they are willing to look at the hard stuff and deal with it, and not pretend it isn't there.  There is no attitude, no nastiness, no rancor.  Just moments of clarity that are hard, and then acceptance and problem solving.

No one knows how hard life can be at this stage with challenges like this, they see an ordinary group of teens whose invisible disabilities aren't always present.  Matt is flying a plane, for goodness sake!  Why can't he drive a car?  Wellllll...decisions made in a plane are allowed more time.  Turns are planned well in advance, miles ahead, and there are not distractions like kids playing in streets, other cars coming at you, road signs to read and interpret, turn signals to activite, windshield wipers to turn on, speed to watch that changes constantly depending upon the road you are on, 3 mirrors to keep an eye on while looking out the windshield.  Flying is an entirely different activity requiring different...methodical...skills.

Matt asked me the other day if I knew what "apraxia" was, and I told him that I thought it may have something to do with his inability to speak at certain moments, but that I had yet to look into it much because we were really just beginning to see this come into play.  I was pleased that he was researching things himself, and throwing out ideas.  A chip off the old block, maybe :-)

We move into young adulthood with these amazing teens, each fighting to make it on their own, each needing security to be who they are, to learn more about what they can and can't do in the world through no fault of their own.  They are working against so much, and yet continue to grow and mature.  It won't look the same as other families, it will take a lot longer and we all know that.  Others may judge, but they don't really know...they don't know how far we have come, all we have overcome, and all we still have to figure out.

But we know, and we are a team...and we will all make it somehow.

Thursday, October 19, 2017

To Be Understood, a "Friendaversary" Tale

One afternoon a little over three years ago, I sat on my living room couch trying desperately and unsuccessfully to hold myself together as I was explaining to a dear older friend how I was feeling.  I was drained from the day to day work with our special needs crew, I was growing ever more isolated as a stay-at-home homeschooling mom who didn't quite fit anywhere, and I was more lonely than I can recall ever being in my entire life.  Sure, I had friends I interacted with at church, and I had my family (Yea, YOU try maintaining your sanity with a houseful of teens and pre-teens 24/7! Hahaha!), but what was missing was a deep connection with someone who "got it".  Many of my friends were well beyond their parenting years, or had never parented at all, and they either shook their head saying, "Man, I have no idea how you do it!" or "I don't know WHY you do it!"...both similar words yet very different statements.  There was no malice meant whatsoever, but a simple lack of understanding of my singular life.

We had started homeschooling when Matt was in fifth grade, and it was like trying to jump into a well formed clique that was strong and had been for years before we came along.  This, too, was not out of malice, but is just sort of how life goes.  Being more progressive in my theological understandings and being in the homeschool arena also left me feeling uncertain, as the homeschool world where we live, as in most places, is largely Christian and can lean far more conservative than we are.  This isn't a problem for me at all, and I love my Christian friends of all ilk, but I was always afraid of letting the real me show and feared being rejected because I said the wrong thing.  Like millions of Protestant Christians in America, I do not take the Bible literally, but I do take it seriously...however in certain homeschooling circles that admission alone can brand you a heathen.  

The proverbial straw that broke the camel's back was after the first volleyball practice of the season, when I went in and politely chatted with a few of the moms as I always had in prior years, and one of them turned to me and said, "Oh, are your kids playing this year?" and not quite understanding I responded, "Yes, just like we do every year." and she looked at me quizzically and said, "I don't remember seeing you or any of them last year." and then turned to talk to another mom, totally clueless about the impact her words had made on me.

We had literally had five kids playing on three teams the year before, and I had visited with this very mom at almost every single practice and game.  We were so distant from being considered part of the "core group" and my family and I mattered so little that it hadn't even been noted that we were in attendance for an entire season.

I went to the car, more heavy hearted than I had been in years, and despite my best efforts started sobbing.  I had tried so hard to visit, to be warm, to engage others in conversation despite how hard it is for me as a bit of an introvert, and still it didn't matter.  Something shifted for me in that very moment, and I realized it was pointless to try and make much more effort to try and fit in where I truly just wasn't going to fit.  I prayed on the drive home for God to reach into my heart and help me cope with feeling so lonely, to help me learn how to live with this as it was imperative that we continued to homeschool for the sake of our kids and I was committed to that with my whole heart, but I was aching with the seclusion that brought.  

You see, I had even moved beyond my prayers for closer friendships and companionship and was simply asking for God to help me accept this as the way my life was going to be.  I had given up, and just needed to find a way to be OK with it all.  Aside from the lack of connection in the homeschooling community, our unusual situation with our kids meant that I didn't even have anyone who understood our life from a parenting perspective.  We have to make so many decisions that are counter to what other parents do, and we have to parent such a wide range of abilities and disabilities, emotional trauma, neglect, and more, and I have been the interpreter of the world to my children, but am also sadly in the role of interpreter of my children to the world.  Your standard parent hasn't had to deal with the rejection of an infant due to Reactive Attachment Disorder that takes years and years of work to heal, they haven't had kids hit their heads because their brains don't work and cry out as they say, "I am so stupid!  I am SO STUPID!", they haven't had to parent children who have witnessed murder, who have suffered institutionalization, who have had their hearts, bodies and minds crushed by the very people who were supposed to protect them. 

I had perhaps one or two people I knew at all via the internet who had adopted so many kids from orphanages overseas, let alone kids significantly older.  I had no role models, no one I could call with the sometimes terrifying issues we dealt with every single day, no one who understood how much damage was being done to my own spirit as I was the emotional sponge for all the very real pain I was absorbing in our home every day.  Don't get me wrong, we were truly happy, too, and still are, solely thanks to our invitation to God to be smack dab in the middle of our lives, but it has been harder than I can ever explain.

So as I sat there, unsuccessfully keeping the tears from flowing as I shared with my friend who truly loved me but  with whom I also didn't share much in common, how I was just wrecked, lonely beyond belief, and felt at moments like I was always going to be alone. I was fifteen years into a journey that I would STILL take over again, but was beaten down and declaring loneliness the winner.  I don't know if I had ever allowed myself to be quite so vulnerable up until that point.

Barely a month later, my sweet friend Mary who heard my heart that day introduced me via Facebook to someone she had met at a conference a few days prior, someone the Spirit had told her to connect with, and she listened and felt something strong that she couldn't ignore.  Through a series of "Divine Coincidences", Mary stumbled upon the person who would quickly become the best friend I would ever have...all because she listened to the Spirit guiding her to keep nudging us together.

Tentatively, trusting Mary's gut, Rev. Candi Ashenden and I began communicating through emails and Facebook, trying to ascertain what it was that Mary saw might be there for each of us.  Our first real communication was when she asked me to send her the copy of a sermon I had just delivered, wondering if maybe she could find something for us to talk about, as Mary kept bugging us :-)  That was all it took (not that the sermon was that good, trust me!) as Candi was able to see my true heart somehow in the lines of that sermon, and we began to develop a deeply meaningful long distance friendship that sustains each of us today.

Three years later, on this day we celebrate our third "Friendaversary".  At first glance, it would be hard to see how we could have anything in common at all, me a homeschooling mom of five kids most of whom have learning disabilities, no college degree, total Southern California attitude at times who also has a lot of Colorado rural common sense, straight and married for 30 years to my high school sweetheart...then there is Candi who is a highly educated fairly naive (versus SoCal!!) pastor with a bit of a typical New England insularity, who has two academically high performing kids who attend private schools, with her spouse, Pam, who is an attorney.

But you know what?  First glances can be so deceiving...

We are both committed to our families and would do anything for them, and we love our spouses and work to keep our marriages strong like any long married couple does, gay or straight (She and Pam have been married 20 years).  She has a child who struggles with high functioning autism and it brought to her a sensitivity and understanding about my own it did to me with hers, each of whom I love as fiercely as I do my own.  We both love to write, to talk about ideas, to brainstorm.  We both talk...a LOT! Hahaha!  We both are INFJ's on the Meyers Briggs personality profile, that oddball 1-2% of the population who are intuitive and have a unique set of qualities that few others have (quirky, we are!).  There is a love for learning that comes through with each of us, to the point of being annoying :-)

But it is perhaps in the area of our faith where we most closely align, walking it with all we are worth.  It doesn't matter at all that she is a pastor for she would be the same way whether she was a secretary or a teacher or a pastor, but with Candi I can share my daily interactions with the Spirit and my faith and not worry that I am making someone else uncomfortable.  The biggest part of my life doesn't have to be excitement when God 2x4's me, my seeking prayer for God to reveal the right path for me to take, my abiding sense that God guides all our family can all be talked about as we actually DO talk about it in our family, as part of our regular old daily life and not as if it is reserved only for Women's Group or for sharing Joys and Concerns on Sunday morning.

This friendship has saved me in a very literal way, and it was God who saved me through it.  I suspect she might say the same thing.  I have never met a kinder, warmer, more authentic, loving human being, and the lives of my entire family are richer for the presence of her and her family.  She is the sister I needed and never had.  No one has ever treated me with as much respect for my intellect despite my lack of education, and has seen more possibility in me, nor encouraged me as strongly as Candi has.  

I remember after the second email we sent back and forth going to Dominick and telling him, "I am getting to know someone Mary introduced me to who I need you to know feels like a 'keeper', it is the same sense of knowing I had with you and with each of our kids...I'm just letting you know someone important may be entering our life." and my dear husband, having years and years of being part of that unusual "knowing" I seem to have and being blessed by it with our kids, trusted me 100% and took me very seriously.  He also trusts how God works in our lives, and that in this arena, it is me who hears, and in other arenas, it is his job to be hearing and my job to trust.

This is the friendship that shouldn't be...the one that distance alone ought to have kept from blossoming.  We should have never met, we should have never found our common ground.  This is the one that was truly a gift from God, one that could never have been orchestrated by either of us.  This friend is the one my children and husband needed, where aunties and cousins were included.  This is the one who would drop everything and "show up" to be beside me as my kids suffered through surgeries, as they experienced new self awarenesses that were hard to accept, and as we work our way gently and steadily toward adult independence that will take longer and look quite different.  This friendship is the one with wisdom to share that helps me be more creative, more honest, and most certainly more whole.  This friendship is the one where God can also be placed in the middle without reservation or concern.

English may not offer us other words as some languages do, and it inhibits us from expressing the many different kinds of love we all experiences.  We hear of "love stories" and we think of romantic love, but every once in awhile God offers love to us in extraordinary ways, through the unlikeliest of relationships.  Friendships, when deep and true, can fill us up in completely different ways.  We can love others' children, we can love entire families as they join ours, we can love other couples who fill grandparent gaps in our is in short supply in the world these days, so why limit it??  

Monday, October 16, 2017

We Belong to One Another

There is a theme that has risen to the surface for me the past several months, and I always pay attention to these themes that appear for a season, as they almost always speak to me of approaching changes or opportunities.  For the past year and a half or so the theme of "letting go of ego" was incredibly valuable for me to work with, and it appeared before me in writings, in real life examples, and in song.  Clearly, the Spirit was working with me to elicit much needed shifts in thinking.  Letting go of my own ego's needs was highly important as I moved on to this next stage of my life, and it allowed me to let go of circumstances that were unhealthy for me.

The theme recently cropping up is about loneliness and belonging.  Article after article is being written about American's loneliness and isolation, and that isn't reserved just for the elderly.  Our digital world allows for more communication, but it is often shallow, lacking depth and authenticity.  We are fooled by the number of Facebook friends we have, the number of "likes" we get on Instagram, or the number of page views we get on our blogs.  It leads to ego feeding, as well as soul hiding...the more we reveal, the less authentic we sometimes become and we only allow our "public persona" to show.  It leaves us ever more alone, contrary to what our social media statistics might say.  There is nothing quite like connecting in person with someone, where body language can be read, where a hand can be touched, where a glance can say it all. 

We humans have an innate desire to belong.  Isolation is not our preferred state, and it actually does incredible harm.  But being around others is not at all the same as belonging to others, and it is the sense of belonging that fills us up, brings us the deepest satisfaction, and nurtures our souls so we can continue on as the healthiest versions of ourselves.  When we don't belong, we yearn for something we can't quite put our finger on...we ache inside, and we are very often afraid of appearing vulnerable so we never reveal our heart's longing to feel we belong.

Our family recently experienced about a year and a half long period of gradually deepening mourning and loss, and it caused us to pull inward while still searching for our new place to belong.  Leaving our old church family was necessary and powerful, but sometimes doing what you have to do still leaves you lonely and feeling a little desolate.  We are a fairly social bunch, even the introverts among us (That would be Matt, Olesya and I!), and we need community.  The Mother Theresa quote above speaks to it well, we had no peace because we didn't belong to anyone.

Finding our new church home, Shepherd of the Valley Lutheran Church, was an incredible blessing, and though everyone was as warm and welcoming as could be, what we felt when we joined was really more the potential to really belong rather than a reality that had been lived into.  Creating connections with others takes time, it takes opportunity to be together, and it takes an open heart and a willingness to be vulnerable on both sides.  The distance is making it a little harder to enter into communal life because we simply can not be there for everything, and the two and a half hour round trip might make others hesitate to ask us to attend things, because they are sensitive to the amount of time it are we, and it has made us hesitant to ask others into our home as well because of the time imposition.

But what about when people truly work at trying to get to know you?  What happens when effort is made, and when others actually want you to feel you belong?  Magic, pure and simple, that's what happens. 

Yesterday, our family was invited to brunch at the home of one couple from church who were themselves long past child raising years, and we were joined by another lovely couple from choir who has truly gone out of their way to chat with us each and every time they see us.  Their excitement at having all of us was surprising, as honestly, who really wants a 15 passenger van full of teens rolling up and emptying out to fill up your home, and eat like there is no tomorrow? 

So much thought and care had been put into hosting us, even to the point of a phone call earlier in the week to check on drink preferences for the kids!  We walked in to a gorgeous fall tablescape, and were instantly made to feel at home.  Though the food was wonderful, what really filled us up was the fact that every adult at the table spoke directly with the kids, even having given thought to questions to ask them to elicit responses.  Stories were shared by everyone, as we also got to know our new friends better and gained a sense of their own history that we had not been present for.  It is hard to try to get to know a large group of people whose lives have been intertwined for many years, and you don't know the backstory.  We have been lucky that so many have taken the time to share or explain things, reflecting a sensitivity to our lack of institutional knowledge. 

This theme of belonging emerged earlier in the day when we had a guest speaker in worship from a program called Mosaic, which serves those with developmental delays.  The program director shared about how we have to move beyond the "acts of charity" in terms of being inclusive, to understanding that every single person has dreams, needs community, and has something to offer the world. Regardless of what delays a person may have or disabilities that they struggle with, everyone needs to belong in an authentic way that doesn't wreak of tokenism.  I don't even need to tell you how much of an impact this made on Kenny, in particular, as he nodded and grinned throughout her time speaking with us.

Another mental picture of belonging formed as I returned to the sanctuary a little late as Bible study had already started, and there without any other LaJoy present was Matt sitting alongside a long time member who he was quietly visiting with. I don't even know why that hit me the way it did, but there was a companionable comfort level that Matt doesn't often have with others.  His wife soon joined them, and there was Matt, right between the two of them as if he just belonged there.  The rest of the family soon joined me in the pew behind, and we all shared our thoughts on the topic for the day, just as if we had been doing this for years. 

Belonging...when one looks up the definition, one meaning of the word is "a close or intimate relationship, a sense of belonging".  It doesn't just mean you have agreed to join something or are included, but in its truest sense it also can imply acceptance and intimate knowing. 

Standing in the living room after brunch, as we slowly began to make our way towards the door to leave, all eleven of us formed an unplanned circle as everyone was laughing and engaged with one another on a little deeper level.  Each of the kids had been intentionally conversed with, not just as "those LaJoy kids" but as unique individuals...they were "seen" in a new way.  Often folks lump them together as a gaggle of kids, and rarely take the time to get to know them each for the funny, terrific, wonderful young people they are (OK, I am their mom and this is MY blog, so sue me if I think they totally rock~!!!). 

There was a warmth felt in this group that touched me deeply, and how could I not feel we belonged when both of our hosts, near tears, spoke of the blessing it was to have us as part of the congregation.  Try as I may, there really is no way to express how important church is to our family, how special this community is to us, and how desperately we need God's presence in our lives through the very hearts of these people...our new church family.  Our life together in this family is not an easy one, but it is one I wouldn't trade with a single soul.  However, without God, we are flat out not going to make it.  We have too much we are struggling against, too much lack of acceptance of our differences when we are "in the world", too much that feels so hard on a daily basis.  The joy we have is something each and every one of us is convinced comes solely from God being smack dab in the middle of our lives. 

I couldn't help it, and just as we were ready to leave, I said it felt like we should part in prayer.  Holding hands, some familiar, some less so, but all recognizing that we are part of God's wider family and that we all desire to share God's love, we prayed together. 

And in that moment, we all belonged to one another. 

Monday, October 09, 2017

Leaning In

I have been pondering how to approach writing this post for several days, and even now as I sit to try and write for the third time I know I don't have it quite right, but it won't leave me so I will give it a shot, and apologize ahead of time if it is incoherent or plain old pointless.  It is long, it is winding, it is heartfelt, and it needs to be written if only to reinforce things for myself. 

This week was a profoundly important one for both Kenny and I.  Our day long annual cleft lip and palate clinic was unremarkable as it pertained to Kenny's health, and the next surgery will be delayed a year as his orthodontic work needs to be further along.  However, it was only afterward that we understood the real reason the two of us were alone for an extended period of time.

God had some work to do on our hearts and minds.

The past several months, we have sort of "lost" our deeper, more enthusiastic Kenny.  At first Dominick and I attributed it to summer haze, and the lack of working his brain daily on school work.  Over time, it became more clear that something more was going on.  Since he turned18, I have tried to back off a bit more, to allow him space to mature and take on more of his own life.  He has also been encouraged by us to advocate for himself, to explain to others that he has a disability and needs supports in place in the form of other people helping him, extra time to record things so he won't forget, etc.  In other words, I have been doing the same thing in many ways as I have with Matt who is 8 months younger...letting him run his own life more, and stepping back.

Kenny, in turn, has pulled back a bit, trying to live into his 18 year old self while being far more aware than any other 18 year old young man ought to be of the gentle pressure his special needs place on my own shoulders.  He recognizes that being his "second brain" is no easy task, and he wants to make it as easy as possible on me. 

Wow...what a bust this has all been.

What has happened is we have a more disconnected son, both with us and with the world at large.  Kenny has grown apathetic, "flat", disengaged.  His passions have fallen by the wayside, and his overall demeanor has been to just "settle" for the mundane.  Watching this gradually happen, I was stumped as to the cause.  Was he giving up on a future?  Was he more content to just give in to his disabilities?  Had I failed him in some way?

It was at Shriner's where we both began to notice one specialists dealt with us throughout the day, many made us feel incredibly uncomfortable about being a "team", about having me present to help answer questions correctly, to interject as needed, and to assist where Kenny struggled.  They made me feel like a heavy handed, pushy helicopter mom which made me naturally pull back, and they made Kenny feel as if he wasn't "stepping up to the plate" as a young adult.  No amount of explanation of this invisible disability seemed to help, and we have noticed how regularly people are treating us this way outside the medical setting as well.

The psychologist, who should have truly been trained at least a little in Fetal Alcohol Spectrum Disorder (FASD) was actually the worst, trying to insist that I not be present for the interview.  I offered to sit back down but also added, "He has already answered important questions incorrectly today, and he thinks he is right, so go ahead but you are not likely to get correct information."  I told her I would sit silently, and Kenny could answer anything as best he could without my input.  She reluctantly relented, though was clearly displeased, despite Kenny saying he wished for me to be there to help answer questions if his brain hiccuped.

Despite the fact that Kenny had already confidently stated he had never had issues with anesthesia, when he had definitely had issues in the past.

Despite the fact that Kenny couldn't recall the name of the medication he is on.

Despite the fact that Kenny offered the wrong dosage amount of that medication.

Despite the fact that Kenny had to stop and think when asked about how many siblings he had.

Despite the fact that Kenny could not at all recall what grade he is in.

Despite the fact that Kenny couldn't name a single activity or interest he had when asked, and his brain just blanked out.

Despite the fact that Kenny, though he tripled checked his packing, had not brought anything to sleep in and slept in jeans for two nights because I hadn't checked all of his items myself.

All of this, which happened in a single day, and still we are made to feel as if somehow, we are unhealthily yoked to one another.  How anyone could witness such lapses and not understand Kenny's difficulties and the need to have someone assist him is beyond me, but somehow he is still deemed the "boy who never grew up" and I am the proverbial "helicopter mom".

It was on the drive back to the airport the next day where the light dawned on us both.

"Kenny," I started, "What do you think is really going on for you these days?  You just aren't yourself any more, and I don't know what to do.  Have you given up?  Is there something I can do different?"

He sat there, mulling it over, and eventually responded that he just didn't really know, but he agreed that he felt "flat", and had for several months. We spent the next few minutes sort of warming to the conversation, each of us feeling our way toward the exact words to describe what was going on.

Then we started talking about the day at Shriner's, and how awkward it really is becoming for both of us with others who don't understand.  We can't find the right words to help others see that Kenny needs regular assistance, even if on some days it looks like he doesn't.  He is so understanding about my side of this, how it feels to be in my shoes and be judged. 

As we continued to talk, poking and prodding at the problem at hand, it slowly clicked for us what our real problem is. 

I need to Lean In.

I have leaned out too far, and though understandable at this stage in his life for the normal brain, it is causing a disconnect for Kenny.  And I have leaned out because others who think they know what is best for him have judged both he and I, and we are each too busy trying to keep others from judging us or making comments.  We have cast aside what works for us, because it disturbs others to see how we must be a team.

Finally, Kenny turned to me and said, "Mom, I know this is hard, but what I want to do is give you permission because maybe that will help make it easier for you, and make you feel less like a pushy mom.  I need you to take control, I need you to tell me what to do on some things.  I don't want to be a burden on you, but I am afraid I will have no life at all if you don't because my brain just can't.  Others will never understand, and it bothers me so much what people say to you that they don't have the guts to say to dad or me, but I am giving you permission to push me, to tell me what to do when I don't get it, and to help me have a real life."

He put his arm around me, and said, "Please be my helicopter!" and with tears in my eyes, we both laughed.

You see, without help, Kenny's brain doesn't initiate actions on his own.  We have seen a dullness settle in because he has spent far too much time this summer in front of screens playing video games or watching cartoons (Yes, at 18 he loves cartoons, Sponge Bob being his favorite...FASD means mixed maturity.), and I have let him try and direct himself around things because he is an adult and it feels wrong to dictate to an adult what they can and can't do with their free time.  Yet, as he pointed out having observed me with Matt and Josh, I am naturally a non-helicopter mom...letting them fly places alone, ride bikes all over town alone, handle their social life on their own, etc. So Kenny wisely explained to me that my natural parenting style is in conflict with what he needs, which is the exact opposite, and yet then when I do "lean in", I get criticized which is even harder because it really ISN'T who I am or how I parent. 

This kid is so astute, it blows me away sometimes.  He has the ability to see things from so many different angles, he always makes me see things differently.

But Kenny can't do what other 18 year olds can do, he can't have free time and actually think of what to do with it.  Yea, seriously.  So he defaults to the screen.  It isn't that he doesn't want a variety of things in his life, but his brain can't initiate it.  For example, he will only buy blue Powerade.  Why?  He loves the other flavors, too, but as he explained it, his brain can't handle making choices so it picks one, and as he says, "defaults" to it.  Same thing with eating out, he never veers from getting a hamburger, even when at a place where he loves other foods...because his default makes it easier than sorting through choices.  He has even asked me to suggest a different flavor or meal so he has diversity, because he literally can not do it himself.

So Kenny, without direction, defaults to the "easy" setting, using a screen.  He admits he doesn't even LIKE it as much as he does it, and the minute someone suggests something else, he will jump to do it, but his broken brain can't initiate it in the moment. 

No one understands that my son, without guidance for the rest of his life, will stop doing things because he can't make them happen on his own.  How does one explain THAT to someone?  My son is brain damaged. He doesn't look it, and often, he doesn't act it.  He is also highly intelligent.  But he is brain damaged, and nothing will change that. 

All day, throughout our travels, our conversation continued as we tore apart the last several months, dissecting it so that we could reconstruct a way to walk through life that will work for each of us.  Oh, this lovely young man of mine cares SO MUCH about my life, too!  We talked about his future, his dreams...which he admitted he had sort of cast aside recently because it seemed too hard to reach for them if he didn't have me as his partner.  He was willing to settle because he thought everyone else would think it was stupid for him to have his mom by his side helping him, and I was willing to allow him to settle because everyone else keeps telling me I am somehow parenting him poorly.

They don't know, they never have and they never will.  And I am sorry, but I will be DAMNED if I am going to let what works SO WELL in that brain be wasted solely to satisfy others!!!

As the day wore on, I literally watched Kenny come to life before me.  He excitedly talked about working with kids and deeply desiring that for his future, as well as wanting to learn more about business, and we talked about his capacity to take college courses with the right game plan in place (asynchronous, one at a time maybe, other accommodations in place) so that he could study politics, history, and theology.  Many times he said, "But that means more work for you, mom, and I don't want to be a burden." and I told him I would much rather have THIS Kenny in front of me and work hard to help him, than to see the dull version we had been living with recently and have more free time myself.  I explained he was never a burden and I always had a choice, and I choose to help him in this world, just as I would any of the other kids in the ways they need it...and likely will for a long time to come as well, for he isn't our only special needs young adult.

We decided I would "Lean In" and help him manage his clothing choices each day, which are always wrong for the environment.  We decided I would "Lean In" and help him get off the computer and suggest hobbies and remind him daily of things he can do each day other than screens (we both see a tremendous difference in brain function when he is not using it for escapism too much).  We decided I would "Lean In" with helping him get his daily personal grooming done each day.  We decided I would "Lean In" and offer suggestions for different foods to eat and different beverages to drink.  We decided I would "Lean In" and help him imagine a future that is brighter than being a mere stock boy at our store, something that is a fall back for him but would not help him use the gifts that God gave him.

Basically, we decided I would "Lean In" in every way, and he promised to do his best to make sure I was never a crutch, and he would do his very best to handle as many things as possible on his own, but the initiating pieces appear almost impossible for him.  We established a weekly meeting together, just he and I, to go over weekly, monthly and yearly goals, and to see where we need to adjust my "Leaning In".

The animation I saw was almost shocking versus the sluggish Kenny we have had.  There was an immediate, tangible difference.  And you know what?  I will never let anyone else make me feel like I should leave my son alone in his disability ever again.  I totally own this one.  I was testing the waters, trying to discern what is reasonable and what his needs are.  This is true.  But I also, sadly, let the opinions of others cause me to pull back precisely when I should have Leaned In. 

As part of our conversation earlier in the week I had been telling Kenny that no one at church really knew him, that he was not putting himself out there in the ways I know he can, and I couldn't understand it.  Was it that he felt uncomfortable in our new church home?  No, that wasn't it, and as we talked he came to realize that it was an overall "flatness" that had nothing to do with church, but he could see what I was saying and understood that.  Sunday evening, after this awakening, the kids and I went to a church event where over dinner and drinks we discuss issues of the day and how they intersect with our faith.

It was as if God was affirming for me that the direction we were taking was indeed the right one.  The topic was gun control, and Kenny was back to his usual old self again, so obviously different from these past several months that we all noticed it.  His critical thinking gifts shone, he was spot on with his analysis of various situations, and as usual when it comes to these topics his memory oddly isn't an issue and he used data to support his statements.  Basically, he presented as the bright young man we have missed so much! 

Then God hugged me via a message I received after returning home from someone in attendance.  She and her husband were talking on the way home, and her husband said, "That kid is going places!", and she had wanted to share that with me.  Oh, how I needed that affirmation!  She had no idea the perfect timing, and how God used her with that small message of hope for us. 

When will I learn?  When will I stop worrying about being counter cultural?  When will I stop being concerned what "the world" thinks about how we live our lives and remain firm in how God has guided us to live and parent?  This is my weakness, my fear of others' opinions of me.  We have an extraordinarily different set of circumstances and disabilities we are working diligently with to try and get kids as far as they can possible go.  We are working with disabilities few understand or can see. 

No one likes to be criticized, it hurts.  Sometimes it hurts a lot.  As our kids mature, the criticism increases.  I have been advised to develop a thick skin, and yet that thick skin, if developed would work against me.  The world, and my family, needs softness,  it needs tenderness, it needs forgiveness and awareness and vulnerability.  Thick skins wipe away a lot of what I feel is important to model.  I don't believe in thick skins, but maybe I can view it differently so it doesn't hurt quite so much.  Maybe I can look into Kenny's eyes...or Angela's...or Matt's...or Olesya's...or Josh's...and see all the reasons in the world that make the criticism and the pain worth it.

Yea, I think that is a better solution. 

Lean In...Thin Skin.