Blessings From Above

The blatant blessings in my life compelled me to attempt to put into words how I am feeling tonight.  

The last two years have been filled with anxiety and loss and the recipe for tearing a family apart.  We have navigated Covid and so many family losses.  It should have sent us all into depression and despair.  Until recently, our oldest has been physically, and to a degree, emotionally far from us.  There has been illness and injury.  Death and losses that will mark us for a very long time.  

Through it all, we have persevered.  In fact, our youngest son has THRIVED.  

This year, at school, he has transitioned almost entirely into regular education with only minor special education supports.  He is self-managing his assignments, responsibilities, and needs with limited oversight by us.  I only check his school online grade book from time to time.  He only requests my assistance with homework once in awhile.  Despite our hands off approach to the school year, he is maintaining As and Bs in all of his classes.

In addition, he was accepted into the culinary program at the local vocational school.  His end goal is to become a baker in a small bakery or to eventually create his own custom desserts.  To work toward that goal, he worked diligently to keep his grades where they needed to be to be accepted into the program.  Now that he is there, he LOVES it.  He often comes home and requests the materials and ingredients to duplicate the meals he is cooking at school.  We then get treated to delicious meals that we don't have to cook.  Woohoo!

Recently, our son was asked to join the Unified Bocce Ball team at school.  This is our son's first official sport.  He is so excited to find a sport that he can participate in.  He loves that he is now part of a team.  Watching him play is such a fun experience.

Our son was also asked to take part in the Pennsylvania Youth Leadership Network (PYLN).  This organization teaches young adults with special needs to be leaders and advocates for themselves and others in their communities.  He has enjoyed meeting with others who think and navigate life similarly to himself.  I'm excited for him to take part in the board meetings and learn how to further develop his leadership skills.  What a cool opportunity!

Our son also started taking piano lessons this summer from a local pianist.  He loves music and enjoys the band at school but has long desired to learn to play the piano.  Right before covid shut down the world, he had started with a gentleman further from our home.  They really enjoyed each other but covid brought things to a screeching halt and lessons needed to wait.  When we decided it was safe to start lessons again, we changed to someone closer to home.  Our son misses his old instructor but his new teacher's structure and emphasis on process and correct technique is much better for our son and his needs.  The growth he has shown in just six months is amazing.  

Which brings me to tonight.  

As I sat at home alone with a nasty cold, my son went to our church early Christmas Eve service and played Silent Night for the congregation.  Further into the service, the pastor selected him to read a passage of Scripture for the service.  Seems sweet but rather insignificant.  Right?  Cute.  But what's the big deal?

Everything about tonight is monumental.  Huge.  Very significant.

Our son with fine motor issues, gross motor issues, and stuttering/speech issues played the piano and read aloud for a packed church service that was live streamed to a Facebook audience, without me present as a source of reassurance.  If you haven't lived it, there aren't words to convey how tonight feels.  It goes beyond joy.  Beyond pride.  Beyond relief.  

It's hope.  Hope for a future of independence.  Hope for a future of self-reliance.  Hope of infinite possibilities.  Each small step conquered is a step toward that ultimate goal.

I know I've failed to fully express how this moment feels.  My hope is that you can feel an ounce, a fraction, of what I'm trying to convey.  My hope is that when you witness a young adult or adult with special needs meet small milestones and accomplishments, you remember reading this and convey love, joy, and support for that person and that family in that moment.  Because in our world, those small moments are everything.  

Thank you Lord for your blessings even through the storms.  

Learning to Grieve With a Child on the Spectrum

 It's been over a year since I last blogged.  There are many reasons for that so I'll give you the shortened version.  My son is now a teenager and I'm trying to respect the fact that it is hard to be a teenager but especially a teenager who is "different", let alone one whose mom blogs about your differences.  The 2019 - 2020 school year was one of my most challenging in over two decades of teaching.  I was emotionally and physically exhausted.  Covid.  No need to say more there, huh?  I lost my teacher partner and needed to grow and develop a teaching relationship with a new one.  My oldest son started running professional fire fighting while attending college in Lancaster, PA.  In 2020, we lost too many family members, including my father.  

All in all, 2020 was a terrible year for many of us.  It was a year I know I never want to repeat.  

Moving fast forward into 2021, I am intentionally moving into a different place mentally, emotionally, physically, and spiritually.  After we lost my Dad, I kind of went numb.  I felt emotionally dead.  My brain was fuzzy and I was going through the motions of life without really knowing what I was doing or how I was doing it.  Covid life seemed to amplify all of that.  On the outside, I seemed fine.  People thought I was coping very well.  Inside, I wasn't.  Not at all.  My health deteriorated.  My weight ballooned to a lifetime high.  I was going through the motions at work.  I was going through the motions at home.  

Right before Christmas, I had an "I've had enough of this" moment.  Nothing in particular triggered it.  I think it was an accumulation of everything.  I was tired of living numb and lifeless.  Then and there I decided that I was the only one who had the power to change the direction of my life.  Since then, I've only listened to Contemporary Christian music.  I read a Bible app with devotionals daily.  I've immersed myself in only things that are positive or bring me joy.  I joined NOOM and have lost 13 lbs. so far.  I'm finding new energy and new excitement in my life, both at home and at work.  My new co-teacher has been a blessing and supports me and encourages me.  My girlfriends have held me up and filled me with love and support.  I now refuse to give my time or energy to things that will only hurt me or bring me down.  I can feel myself returning to who I used to be.  I'm slowly finding my joy again.

I've told you all of that so that you understand the background and mindset of how I have been trying to navigate life over the last year or so.  It sounds like a lot of negative and depending upon your perspective, it definitely could be perceived that way.  At times, it definitely felt that way.  In reality, I have been blessed beyond measure.  We have kept our jobs through this covid era.  The loved ones we lost were not due to covid.  Thankfully, few of our family have been directly effected by it.  Those that have, have come through it fairly well.

Are you waiting for the but..,..

Okay, here it is.  Trying to navigate 2020 and the year that we endured with a child like our youngest came with significant challenges.  Real worries.  Real hurdles to jump.

We had to ask ourselves, would he do okay through the U.S. educational lock down that came in the spring?  Would the progress we had worked so hard for be compromised?  Would he regress?  The truth is he came through that time beautifully.  He didn't regress behaviorally, educationally, or socially.  He marched through it all like a champ.  If anything, he seems to have come through it all stronger than ever. 

Because of how medically fragile he was as a young child, covid terrified us.  Did we really want him to go back to in person school?  Would he keep a mask on?  Would he lose it?  Chew on it?  Obey social distancing guidelines?  Keep himself and us safe from illness?  Again, he surprised us.  He has been going to school in person since August and doing pretty darn well.  When his school went hybrid (part in person/part virtual), his group was allowed to keep coming 4 out of 5 days because they needed more in person learning.  He continued to navigate these changes without a blip on the radar.  He transitioned from middle school to high school in the middle of a pandemic with no real issues.  He wears the mask.  Yes, he ate a couple gaiters.  Yes, he struggled to keep gaiters up on his nose.  So we experimented until we found masks that worked for him.  But he's done much better than we ever anticipated.  

The biggest hurdle we have struggled with is navigating grief.  Our grief.  His grief.  Our shared grief.

On the surface, he seems fine.  He seems very much like his big, goofy self.  But the grief comes out in weird, hard to identify ways.  Kids on the spectrum, even high functioning kids like my son, have a hard time identifying how to internalize AND externalize emotions in the  best of times.  Grief makes all of that even harder.  My son talks about my Dad every day.  He works him into every conversation.  He compares him to everyone he sees on television.  It doesn't matter if the comparisons are accurate or the comments are appropriate to the ongoing conversation.  Our son is obsessed with John Wayne right now.  That's because in his mind, my Dad was just like John Wayne.  (He's not wrong.). I've come to realize that it's his way of keeping my Dad alive.  His way of keeping him with us.  He laughs and tells stories about my Dad and tries to apply them to situations that are unrelated.  Sometimes his timing isn't good.  On more than one occasion, he has hurt a family member's feelings because of what he was saying or by laughing, when laughter wasn't the appropriate reaction to the story or the moment.  It's been hard to help family members understand that he isn't insensitive or trying to be hurtful.  He's grieving and doesn't know how.  He just wants his Pap to be here.  In our house, we have always said that sharing the stories of our loved ones who are gone helps to keep them alive for the generations to come.  That's what he's trying to do.  He just doesn't understand how to do it in a sensitive manner.  

The biggest hurdle for me personally is my inability to openly grieve.  The few "bad days" that I've had caused our son to "spin".  If you don't have a child on the spectrum, I will attempt to explain what I mean.  When my son sees or "feels" me grieving, he hovers.  He's in my personal space.  He paces.  He's up on his toes, spinning.  He mentally spins.  He repeats the same phrases over and over.  His thoughts are disconnected or out of order.  He can't organize his thoughts or his activities.  He's too loud, too silly, too sad, too frustrated.  He intrudes on conversations, interrupts, or physically comes in between people talking.  And he touches me.  Non-stop.  He needs hugs.  Kisses.  Pats me on my shoulder.  Rubs my back.  

For better or worse, our son loves me beyond words.  I am one of his consistent touchstones in life.  I try VERY hard to keep myself steadfast and consistent so that he in turn can better regulate himself.  His emotions.  His behavior.  His thoughts.  His actions.  If I am not balanced, it sets him off.  He can't regulate himself if I am not regulated.  

That reality makes it incredibly hard to grieve.  And those of you that have had real grief know that it comes in waves and unexpected moments.  It hits you out of nowhere at times when you least expect it.  So I've tried to allow my son to navigate this in his way, while trying to steer him toward more socially acceptable ways for all involved.  When we've had some bumps in the road, we had honest conversations about it.  "When you said or did X, Y or Z, that hurt "Joe's" feelings.  He didn't understand what you were thinking.  Next time, try to say or do it this way instead.  Or next time, maybe wait and share that with Dad and I but not with that person."  

Last night, after what seemed like the hundredth Pappy story of the day, I said "You're really missing him aren't you buddy?"  He paused, looked really sad, agreed but then bounced onto the next thought.  Grief is hard for everyone but when you struggle to understand other people's facial expressions and social nuances, it is even more difficult.  Loving someone who is trying to figure out those grief nuances is doubly hard. 

So we give each other Grace.  We continue to surround ourselves in the positive and tune out the negative.  We lean on God and each other.  We laugh when we can.  We pray without ceasing.  And we put one foot in front of the other and let time do what it does best.