Sunday, March 27, 2016

Resurrection Family

The news came dressed in smiles and encouragement, and in the moment, it was stoically received.  After all, it really didn't come as a surprise, we knew it was highly probable that Kenny fell in the Fetal Alcohol Spectrum, so confirmation was a bit of a relief.

So tell me why, when I woke up this blessed Easter morning, the tears threatened at every single moment?  I could barely get through worship this morning, where I had to sing with our little choir without totally falling apart, and as I sit here trying to write the tears rise yet again.

Exhaustion surely is playing a part, as my travel as of late has been intense, but that isn't all.   It is grief I am feeling, pure and simple, with a smattering of self-doubt and a smidgen of sorrow.

Our appointment at the University of Washington went smoothly, and far more quickly than anticipated we had a diagnosis of Static Encephalopathy due to Prenatal Alcohol Exposure.  Kenny and I were both interviewed separately, and he was tested for a handful of other issues.  Prior to our appointment we had each filled out many surveys, and I had sent the full battery of test results, school reports, and MD files we have collected through the years, as well as a couple of pages of my own observations as his educator.

"Mrs. LaJoy, we have never had a parent come in so prepared.  We have relatively little testing to do with Kenny, because you have already had it all done.  It made our job very easy." the social worker explained.  After more background information was obtained, I was asked what my master's was in, always embarrassing for me in those moments when this happens and is assumed, and when I reply that I only have a high school diploma the awkwardness that ensues is uncomfortable.  I was questioned about what a day in the life of Kenny is like, about how I have managed to work so successfully with him academically, about how we have managed to avoid the usual obvious behavioral challenges that most FASD kids exhibit, particularly at this stage of their lives.

It was deeply saddening to learn that our relationship and family life is actually unusual for a child with FASD, that often they see mothers of children who are much younger and whose family lives have fallen apart due to the challenges of living with an FASD kiddo.  Much time was spent discussing Kenny's disposition, how has deficits have impacted the family, how I have managed to remain a positive advocate and have such an obviously loving relationship with him.  It reminded me that though daily life might be harder, the important things are solid.  There was a fair amount of time spent pushing me to think about respite care from time to time, reminding me that this was forever and that there was a need to take good emotional care of myself and our marriage.  Clearly, they have seen far too many burned out families, and they were pressing to make sure we don't become another statistic.

You see, Kenny doesn't fit the norm, not even for the diagnosis....and yet, where his critical deficits are, he fits perfectly.  I was told he was way more self-aware than any FASD kid they have seen, he is maximizing his cognitive abilities, and he is behaviorally more well adjusted.  In fact, his big picture thinking is extraordinary and "college like" in his approach.  In the next breath, he falls in the 8th percentile in a couple of key areas, they added new information about additional sensory and motor issues, and when asked if we were right in our thinking that it might be unrealistic to think he would ever live alone, there was a noticeable silence in the room.  It was stated that though the brain is elastic, and there may be some modest improvement over the next few years as he finished growing, we need to move forward in our thinking from remediation to fully living in "compensatory strategy" mode.  In other words, this is about as good as it will ever get, find work ways to work around the deficits.  

They then went on to tell us he might live with an agreeable roommate, pay a caretaker to be present, live in a group home, etc.  Finding meaningful work might be more of a challenge than usual for kids like him, because his intellect was quite high for the deficits he had, and the kind of work those deficits might allow him to do unsupervised would be mind numbing.  They pointed to some "college like" experience programs where he could learn daily living skills outside the family but are not actual college courses.  They said they wanted to point out how high functioning he was, and how he might be able to do some higher level course work with a well integrated helper in class with him taking his notes and organizing him at our local (totally non-existent) community college.  Kenny asked the astute question, "So I can get some sort of college degree, but then I can't have a helper on my job, so what good does that do me if I can't go to work with the degree because I know things but can't handle the actual job because I can't remember anything or organize?  How does that work?"  Silence again, which of course I don't blame anyone for.  There simply aren't answers.

We left with the promise of a longer written report to follow, and a list of suggestions for working with Kenny, many of which we long ago implemented.  We also left with an actual medical diagnosis, something frustratingly long in coming.  Why is it that I have had to spend years researching into the wee hours for every single issue our kids have faced, then beg for testing rather than the experts at school and in the medical field listening closely all these years and offering possibilities and testing? Why do we parents of special needs kids have to fight the entire way uphill?  It is hard enough to raise kids like this, let alone home educate them when the system can't, but it adds another layer of exhaustion to have to fight all the time.

And you know what is funny?  I still find it odd to consider myself a special needs parent, because I still see my kids as basically all "normal" and filled with potential.  Yes, even Kenny.

Kenny and I left the appointment quietly, and as we sat in the parking lot in the car I turned to him and asked, "Soooo...what are you feeling right now?  What are your thoughts?  Are you ok?  Did you understand everything that was said?"

Wisely, he said, "It was so obvious they were holding back being frank about my future because I was in the room, and they avoided answering my questions about how I can live without help and not kill myself by not setting my house on fire, or whatever."  he laughed, ever my jovial kid.  "I think we knew this all along, and I am so glad you prepared me months ago for this, because today would be much harder.  I have had time to think about it, be sad, and move on a little in my thinking.  The doctors just confirmed what we already knew.  I wish it were different, but thankfully, it wasn't new news and I don't feel sucker punched."

"Good," I said,

"How about you, Mom?  How are you feeling?"

"I'm OK, I wish they had more help they could offer, but as usual, I guess it is up to us to figure this out for your future, and I know with all of our brains, we can do that."

We started the car and abandoned conversation as we drove over to Safeco Field, where  just an hour earlier we had discovered that Kenny's idol, Bernie Sanders, was holding a rally.  Oh, how he uncharacteristically begged me to attend!!  And if we couldn't attend, could we pleeeeeeeease just drive around the stadium and see the other Bernie fans outside and see their signs?  Conceding to get out and walk around a little, I parked and we went over toward the line snaking around the stadium, where Kenny quickly jumped in line and started talking to a young college student in front of him.  2 hours later, we were still in line as I acquiesced and realized I was not in control of this moment.  I had no idea when we arrived at 1:00 pm and I was dressed in my lightweight jacket that 8 hours later we'd still be there, as Bernie didn't speak until 8:00 pm.  My frozen body had taken just about all it could take, but watching Kenny come to life was worth every shivering moment.  

The line to see Bernie at 1:30 pm...we were in the first 300 or 400 versus the 30,000 that eventually arrived.

Later, I explained it at home as one of those Divine Coincidences, a moment when God puts something before you and you can say "Yes" or you can say "No", and for some reason, I was as certain of what I should do as I was the day I walked out of Matt's 5th grade classroom realizing God was telling me I was at a crossroads and could say "yes" to what was obviously needed, homeschooling, or I could say "no" and see what happened, all the while knowing what I was being called to do.  Now, mind you, I totally get that spending 8 hours waiting for a politician might seem like a totally different commitment than deciding to spend the next 10-12 years of my life home educating, but here is what was important...

The Spirit was beautifully moving in, through, and around Kenny and I in that decisive moment.  There was something here for him, and I needed to put it within grasp.

Three hours later, as we were sitting side by side, huddled for warmth and sharing overpriced hot chocolate, Kenny turned to me and said, "Mom, this is maybe the best thing you have ever done for me.  Thank you so much!!!!  I know you really and truly didn't want to do this today, and we have to get up early for our flight and everything, but what I love about our family is we always say 'yes' when everyone else would say 'no'.  You are the best mom ever, and I am so glad we are here just the two of us to experience this together!"  Interesting of him to say that, considering I had not uttered a word about what I was feeling.  

Then came the kicker, the heart lifting reason I realized why we were there.

"You know, Bernie is a symbol for me...he gives me hope.  When he started, everyone laughed and didn't take him seriously with only 3% of the vote.  Now look where he is, he has literally started a revolution.  He has made a difference whether he wins or not, and it didn't matter if everyone thought he couldn't do it.  Being here with 30,000 other people who all see something in him makes me feel like there is hope for me, too.  Like maybe, even though I may only have a 3% chance of having a life that matters, you and Dad and my siblings all believe in me and I will make something of myself in spite of what it looks like I can't do."  With that said, he then jumped up enthusiastically to add his body to the next round of "waves" and chants for "Bernie Sanders has our back,  We don't need no Super PAC!"

We dragged our sorry, tired behinds to the airport at 3:30 am, having returned to the hotel room at around 10:30 and getting about 2 real hours of sleep.  Best danged reason to be exhausted I know of.

On our 5 hour drive home from Denver, we talked concretely about Kenny's future.  

"Tell me, Kenny, what can we do to help you live a life of meaning?  What do you think that might look like for you?  What would you need to feel happy and fulfilled?"

Kenny thought a few minutes and said, "That's a great question, mom!  I think I'd like to be able to go places sometimes on my own somehow.  I am not sure how to make that happen since I really can't drive and don't ever want to anyway.  I'd like to be able to go to a store, and not worry about getting lost, or to be able to have just a little freedom to go buy you a birthday gift without you with me."  We talked through how we could find a way for him to practice a hundred times using the bus system in town, maybe work on creating a mental map of it and then he could go in to work with Dominick and go places on his own as the bus stops right in front of the store.  We figured we would practice more at the mall the next few times we go, and find ways of embedding the basic layout of our town in his head, which we both laughed over knowing it might take a year of work...and then we had better never move!

Then he said, "I want my life to matter a little, I want to do something besides just go to work and come home, I want to help people.  I think that I can learn to do a lot of the work at the store, though it might take a long time to get patterns in my head, but over time I can do a lot of the work there and honestly be a value, but you'll need to teach me and re-teach me and I know how hard that is for you.  But I want more than that.  I want to give back somehow."

Ministry is important to him, and we brainstormed what that might look he might help others through his own personal experiences, get involved in disability or LGBT advocacy and politics, which he has a developing passion for.  We even talked about writing a book together with the voice of the son and the mom sharing our experiences so others might find hope.  We realize God has given him a comfort level speaking in front of others, and that he might use that to share his story with people in pregnancy centers and churches, etc.  

As the miles passed, the conversation shifted ever so subtly from acceptance to new life.  You might say, it was a resurrection of sorts.  Now, we have answers, now we can move from trying to "fix" it, to creating the best possible life for him.  More importantly, we can continue to listen to what God desires for his life.

Walking through the doors of church this morning was hard.  I was too tired, too raw, and didn't want to speak at length with anyone, for I just knew I would fall apart. I couldn't quite understand why, and still can't.  Nothing we learned was really new, so why am I just now feeling so much?   I am sure it felt as if I was being cold and perhaps even a bit rude, but I knew I would need to turn around and leave if I had to talk too much.  However, there at church I found the solace I needed as I guess I am moving through more concrete grief, experiencing relief at knowing I wasn't imagining how damned hard this is, and happy to have received the affirmation offered multiple times by the specialists that we have worked with Kenny in all the right ways, so much so that his handicap is almost hidden from the casual observer.  

God met me this morning, in the loving arms of my pastor, where momentarily I did lose it.  God met me in the music we sang, in the message we heard that was totally apropos about failure not really being failure. God met me in the form of an 80 year old widowed adopted grandpa who earlier in the week realized I would be gone right up until Easter and had decided to buy a turkey and invite us over for dinner tonight so that I wouldn't have to worry about a holiday meal. God met me as I looked around the Sanctuary into the faces of so many who love our family, pray for us, and have even offered financial support that was what helped us get to Washington and a final diagnosis in the first place.  

God met me because that is what God does.  We will wind our way to new life with Kenny, because that is what is offered as we learn the lessons Jesus taught.  We will continue to say "yes" when the Spirit leads, whether it makes any sense at all to others or not, because the LaJoy Family is certainly a Resurrection Family if ever there was one.  Today, I understood that on an entirely different level and give thanks for that.


Lorraine said...

Playing for all of you as you face this diagnosis. Kenny's life matters. It matters to God, it matters to you, and to many others he hasn't even included. I'm praying that God will show Kenny how valuable he is, and will lead him on a path that results in a fulfilling life.

Anonymous said...

Cindy you are such an amazing parent, and Kenny is such a bright and mature boy.

May God continue to bless you and your family.

Carolyn Tarpey said...

Dear Cindy,

Thank you for sharing Kenny's diagnosis, it is very humbling. I admire you so much as a parent, it is no wonder Kenny has come so far... all because of you and your entire family. I ask myself that same question... "why do we have to fight so hard to get our kids what they did", I will never understand that ever!! Just like you, I do not really see Henry as special needs, because he is my Henry and I just adore him for who he is and that is perfect in my eyes. There is no doubt in my mind that whatever path Kenny takes as he becomes an adult it will be a perfect path for him... with you right by his side. Lots of love to you Cindy. Love and hugs, Carolyn