Graduation

Our son is preparing to graduate from high school.

I'm going to just sit with this for a moment and let it sink in.

Tomorrow night is graduation. For the last two weeks, it has been non-stop events, ceremonies, and celebrations. Everywhere we go, I get the same question. "Are you ready for this momma?" Because most people are making polite conversation, (and because I can be socially awkward in person), I typically respond with a simple "Yes.". The real answer is much, much more complicated.

We are ready for him to graduate. He has put in the hard work. WE have put in the hard work. He has earned this moment in the spotlight. We are proud beyond measure.

If you've read some of my other blogposts, you know that our son was medically fragile for a number of years and delayed in all developmental areas. I lived with the knowledge that we may never see this day. Truthfully, I mentally prepared myself that that may be our reality. To see him take part in all of the graduation events, so tall and strong, it's humbling. We are grateful to be here. We are grateful to have these moments. We do not take them for granted. 

In the past, I've written about the grieving process that comes with raising a child with special needs. All parents, if they are honest with themselves, have a subconscious image of what their child's life is going to be like. When your child doesn't meet those early milestones; doesn't fit in with socially expected parameters; doesn't live up to your pre-conceived expectations, there is a death. The death of what you expected; what you wanted; what you dreamed of. As you learn to live this new reality, you struggle to come to terms with what will be. Will your child "outgrow" this? Will your child "catch up"? Will your child ever be "normal"? As time goes on and you start to get your feet under you, you learn to navigate all the systems - school, medical, social, etc. As a new reality starts to emerge, the questions change. What is going to happen down the road? Will my child be independent? Will I support this child forever? How are we going to do this? What do I need to do to make this work? You live in a state of constantly trying to find your way. There is no guidebook. The user's manual for this particular product was written in a foreign language that you can't translate.  

Eventually, things level out. You find your village. You find your support systems. You learn to trust yourself and each other. At the end of the grieving process, you discover something exceptionally beautiful. 

You discover your child. Who he was meant to be. As he was created to be. Beautifully and exceptionally imperfect. Because aren't we all?

But, we are also realistic. There is SO much more we need to teach him. To prepare him for. The world can be a really ugly place. But he doesn't see it that way. He sees the best in everyone. He is excited to engage and befriend everyone. That is an amazing quality. It's also incredibly dangerous in today's world. How do you prepare them for this world? How do you keep them safe as you set them free? How do you guard their hearts, bodies, minds and spirits? People prey on the special needs community. How do you prepare them? 

At the same time, my husband and I are ready for a break. We've done the hard work. We've raised him to be good, kind, intelligent, strong in spirit. He WANTS to be independent. He's prepared to go off to college three hours away. It's a special education technical college with supports beyond the typical college but it's still three hours away. He's excited. He's scared. But he's ready. We are ready. My husband and I are best friends. We are partners in every sense of the word. We are ready to spend time together again without the need to parent. 

We also recognize that there is an extremely strong probability that our son will come home. Home to stay. His independence will come. But that timeframe may look different than some others. We are prepared for that. We have contingency plans. Our eyes are open. We are realistic about our life and our son's reality. 

But we also know that every step of the way, our son has defied the odds. He has persevered. He has overcome. He has succeeded. 

So when you ask "Are you ready for this momma?", the answer is yes. 

Looking Back With Gratitude

 Our youngest son is turning 16-years old.  As we celebrate this milestone birthday, I can't help but look back with love, relief, and gratitude over the last sixteen years.  What a journey it has been!

From the very beginning, life with our youngest son felt different than our experience raising our oldest son.  In his first weeks of life, he was prescribed his first of many rounds of antibiotics.  As an infant, toddler, and preschooler, he suffered from chronic respiratory illnesses, asthma flares, and related feeding challenges.  I remember night after night sleeping in an old recliner with him so that I could keep him upright and treat him with the nebulizer machine throughout the night.  Neither of us slept well for months at a time.  Our world revolved around keeping him healthy and treating his illnesses. 

But he was the happiest child I ever met.  Although he never cooed or babbled, he smiled and laughed easily and frequently.  He rarely cried despite his frequent illnesses and physical struggles.  He stole the heart of all who met him.  

Because he was a large baby, I wasn't overly concerned when he initially failed to meet important milestones like sitting up independently, rolling over, or even crawling.  The steroids that they prescribed to help him breathe puffed him up and added to his naturally large body size.  I figured that learning to use those muscles was harder when you were such a big boy.  By nine months old, it was evident that we needed some intervention.  That's when we first entered the world of early intervention and therapeutic services.  And what a journey it has been. 

Every week for three years, three therapists visited our home to provide one-on-one intervention services for speech, physical therapy, and occupational therapy.  While working full time, running with the fire company, and raising a school age son, we met with therapists to try to gain skills that our son was lacking.  Back in those days, not everyone agreed that these were necessary services.  My husband and many other family members felt that our son "just needed time to grow and catch up."  My training in early childhood education and exceptionalities, along with my motherly intuition told me that he desperately needed all the help we could get him.  I felt very alone during this time. 

As they attempted to explain the delays our son was experiencing, he went through frequent tests, scans, and specialists.  At one point, his neurologists diagnosed him with Craniosynostosis.  This rare condition in which the sutures of the skull prematurely close on a baby, can cause pressure on the brain, brain damage, and facial deformities.  With that scary diagnosis, we were sent off to the Children's Hospital of Philadelphia (CHOP) to consult with a neurosurgeon and plastic surgeon.  The plan was to cut open our one-year olds skull and insert spacers so that his brain would have room to grow and expand.  

At CHOP, they reviewed his scans, met with us for less than five minutes, declared he did NOT have Craniosynostosis and sent us home, relieved but no closer to identifying what was wrong with our gorgeous, sweet baby.  Where did we go from there?  We still didn't have answers.  It would take twelve more years and MANY more specialists until we would finally get answers. 

When it was time to transition from birth to three services, to preschool services, our son wasn't going to qualify for the same level of supports.  Despite only having two word phrases at the age of three and continued gross motor and fine motor delays, he had made too much progress and wouldn't qualify educationally.  That's when we needed to transition to medical therapeutic services instead of educational therapeutic services.  What?!?  I needed to quickly learn the difference and how to pay for those differences.  Our health insurance would only cover five weeks of therapy at an out-patient therapy center.  As a result, I soon became an expert on health insurance and medical assistance through the medical loophole.  

Out patient therapy complicated our lives tremendously.  We now had to coordinate the schedule of three different therapists with our work schedules.  Without the patience of our employers, the support of my in-laws, and my husband's elder great-aunt, I don't know that we would have survived that time.  Through it all, we tried to keep life as normal and routine as possible for our school age son.  He didn't ask to have a brother with special needs.  He wanted to have friends, play sports, and be active in school activities.  We could keep his life "normal" AND get our youngest son all the services he needed to "catch him up" so he could "be normal" some day.  Right?!?!  

Wrong.  Our marriage struggled.  Our health struggled.  My weight ballooned.  We were a wreck.  We desperately needed to make changes in our lives.  

So, we refocused.  On our marriage.  On our priorities.  On both our sons.  And we gave ourselves the grace to be a wreck.  To be imperfect.  To do our best and know that it wouldn't always be good enough.  It often wouldn't be good enough.  But it would always come with love.  And honesty.  And teamwork. 

From then on, life did get easier.  Our youngest started kindergarten and transitioned to school age therapies (speech, OT, and PT) at school.   We changed to an out patient therapy provider that had scheduled hours more compatible to our work schedules.  We kept in close contact with our son's educational team but let them be the experts in his care and provided support as needed.  

As time went on, his health improved.  It required less intensive oversight and management.  The number of specialists that he saw routinely decreased.  The number of medications that he took decreased.  Eventually, with time, the number of therapies that he received would decrease.  

We grieved the loss of who we thought our son would become and fell in love with the exceptionally beautiful reality of who our son was meant to be.  He is a child of God.  Created in His image with a purpose and a plan that we cannot yet imagine but look forward to watching unfold.  

When our son turned thirteen, a new neurologist recommended repeating his genetic testing.  After thirteen years of searching for answers, we found our answer.  Our son has a rare genetic condition called Snijders-Blok Campeau Syndrome.  He has a mis-spelling on one of his CHD3 genes.  Every cell of your body has two CHD3 genes.  It takes one error, on one of these genes to cause a series of genetic anomalies that can result in global developmental delays, speech issues, cognitive issues, autism or autistic qualities, scoliosis, and hypotonia (low muscle tone).  So far, every individual with CHD3 gene mutation is unique and different. We are blessed that although our son has almost every characteristic of this syndrome, he is not intellectually impaired.  He has average cognitive ability and has often been the best source to problem solve the challenges that he faces. 

https://medlineplus.gov/download/genetics/condition/snijders-blok-campeau-syndrome.pdf

Receiving his diagnosis lifted a burden from my heart that I had been carrying for thirteen years.  I wasn't "imagining" that something was wrong with my child.  I wasn't looking for something to be wrong with him.  I felt relief because now I KNEW.  I could help him walk through life proudly and navigate whatever came next with knowledge and information instead of stumbling blindly through the darkness.  It wasn't my fault.  I hadn't done anything wrong.  He was beautifully perfect the way he was meant to be. 

Our son takes pride in his diagnosis.  He is unique.  There are less than 150 people globally that can say they have his diagnosis.  He likes to educate people on his condition.  Knowledge is powerful.  

Sixteen years ago, we had a child that was hearty in size but medically fragile.  I lived day to day secretly wondering if I would get to see him grow into adulthood.  It was my hidden fear that I would outlive this beautiful child of mine.  Sixteen years later, we still have challenges to face and progress to make, but he is a big, healthy young man who towers over me whenever he grabs me for a hug or kiss (which is FREQUENTLY!).  I no longer live in fear that he won't grow to be the amazing man that I know he's going to be.  Instead, I look forward to the journey and seeing where he's going to take us.  His heart is bigger than his giant body.  His faith could put the most devout to shame.  His resilience is humbling.  And the lessons he is going to continue to teach us have no limits.  I'm so proud of who our son is, who he is becoming, and who he has yet to become.  

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.   

2019 - Challenges Yield Blessings

The New Year is all about looking back and reflecting on the year that is coming to an end, while looking forward to a new year, new beginnings, and new goals.  We knew that 2019 was going to bring significant transition and change for our family.  It wasn't something I was looking forward to because I don't particularly care for change.  Regardless of my feelings on the matter, change was going to happen and we needed to deal with it with as much grace as we could manage.

My philosophy on life tends to be laugh at life or pull up your big girl pants and muster through it.  Whining and crying doesn't change the situation.  So when our oldest son was all set to graduate and head off to college, I figured this was no big deal.  We had raised a kind hearted, respectful, hardworking, civic minded young man.  It was time for him to move onto the next phase of his life.  I was excited for him.  Proud of him.  It was no big deal.

Except it was.  It was devastating for me in a way I couldn't have anticipated or imagined.  I was tearful and weepy on and off for months.  Out of no where.  I would be washing dishes and burst into tears.  He would be moody with senior-itis and I would retreat to my bedroom to privately cry and lick my wounds.  Everything was intensely painful and personal.  It felt like I was losing a part of my body.  Part of my soul.  I was losing my baby.

As a result, in hindsight, most of my focus and energy for the first half of the year was invested in trying to manage these feelings, this transition, and this change.  I probably wasn't the best mother, wife, or friend.  I was in mourning but not fully recognizing it.

We were very concerned how our oldest son graduating and leaving for college would impact his little brother.  In the past, they have been very close.  He was our youngest son's hero.  He idolized him.  They drove to school together every day for two years.  They marched in band together.  Our son going off to college would impact us both emotionally but also through the daily routine and structure which is so important for our youngest.

Over our oldest son's senior year, he struggled with his relationship with his brother.  He was late to come to this stage of acceptance that his father and I had already had to navigate.  Although he loved his brother, during his senior year, our oldest wanted his brother to be "normal", or "typical" for all his important milestone events that he was experiencing.  I don't know if he recognized it at the time but he was embarrassed by his brother - his brother who was too loud, too excited, lacked personal space, touched people, got in their conversations, got in their faces.  Couldn't he just stop!  Couldn't he just act like everyone else?  The reality was, no, he couldn't.  He could only be himself.  This phase of their relationship was hard on all of us who were all dealing with our own transition and grief.  It wasn't always fun to live with us.

This year was also the year that we would finally get answers regarding our son's diagnosis.  For thirteen years, we had searched for the WHY?  We had a laundry list of supposedly unrelated symptoms and disorders.  For years, I kept asking if we were missing something.  Could these be a sign of something bigger that we weren't seeing?  No.  I was always told no.  Could his scoliosis and the previously undetected, resolved Spina Bifida be related to his physical developmental concerns.  No.  One was skeletal.  The other was neurological.  They were not related.  Could the drooling and speech be related to the low muscle tone and joint laxity? No.  They were unrelated to one another.  And on and on and on...

Finally, a new neurology physician assistant decided that she wanted to repeat the genetic screening that had been completed twelve years earlier but using the latest technology and screening tools.  And what we found was life changing.  We had our diagnosis, CHD3 Gene Mutation or Snijders Blok Campeau Syndrome, and suddenly everything made sense.  That laundry list of supposedly unrelated symptoms and disorders WERE related.  They did make sense.  They were all of the symptoms of our previously undiagnosed condition.  Yes, the scoliosis was related.  Yes, the joint laxity and low muscle tone were related.  Yes, the speech issues and drooling which were unique and different were spot on, 100%, related.  And yes, the autistic tendencies and behaviors that we experienced in spite of his highly social nature was 100% related.  We had answers to a thirteen year old mystery.

Now that we had a diagnosis, and our son was thirteen, soon to be fourteen, I started asking what's the next step.  Where do we go from here?  How can we ensure that he will be not only self-sufficient, but also independent, happy, and successful post-high school?  His path to independence will most likely look very different from his brother's.  What services are available to assist with this?  What supports are available to assist with this?  Where do we go next?

We met as an educational team to discuss those next steps.  The medical/neurological team told us it had nothing to do with them because it wasn't a medical issue, it was an educational issue.  If you've been reading my blog for any length of time, this is not a new issue.  The disconnect between the medical world and the educational world in relation to diagnosis, treatment, and assistance with children (and future adults) with special needs is criminal in my mind.  IT IS THE SAME CHILD!  How are they unrelated?  The issue boils down to funding.  They are funded differently.  The diagnostic tools and requirements are different.  Intellectually, I understand all that.  As a mother that has had to fight every day since my child was two weeks old for answers and help, I just don't get it.  As you can tell, it makes me angry.  Very angry.  I am intellectually gifted, highly educated, and economically independent and still, it has been a struggle for me to support my son in all the ways that he has needed me.  How do people without those blessings do it?  How do these children get the help that they need?  How do they grow into their best version of themselves?

Anyway, the educational team met to discuss our next steps because our son's next IEP would start to include transition components to help him better prepare for graduation and self-sufficiency.  Based on the conversation, the new diagnosis, and team feedback, it was decided that a full re-evaluation would be completed and that autism screenings would be used for the first time to see if he had any qualifying features.  Long story short, at the completion of the screenings, our son was found to be highly functioning on the spectrum.  He now has an Autism diagnosis.  So all of you that have asked me over the years if our son is autistic, I can now tell you that yes, he is.  The autism diagnosis opens up the door for future transition services that previously would not have been available to him.

As for the neurology team?  They very diplomatically feel that they would not necessarily agree with an autism diagnosis but understand the "education" necessities of that diagnosis.  We nodded and smiled through the appointment but know in our hearts it is an accurate diagnosis.  They see our thirteen year old son who comes to every appointment with two parents who tag team keep him in check.  He has been taught by those two parents what is appropriate public behavior and what is inappropriate public behavior.  They see him twice a year for an hour in the best possible scenario because we believe in setting our son up for success.  They see a boy who has received early intervention and therapeutic services (OT, PT, and speech) since he was nine months old.  They see a child who was raised by a master level teacher who minored in early intervention herself who has worked every day of her life to ensure that her son is as successful as he can be.  Do they see the meltdown days?  No.   Do they see the days where his brain can't put all the pieces together and he bounces from activity to activity to thought to thought with no organization or connection?  No.  Do they see the days when he is fixated, almost obsessed, by an idea that he can't let go and can't move forward from?  No.  Do they see him in crowded, noisy events where he spins in circles and touches people he doesn't know and invades their space and interrupts their conversations because he's so overstimulated by the event and the excitement of the moment?  No.  Were they there when it took us ELEVEN years to successfully watch a movie in the movie theater because it was too loud, too big, too dark, and too emotionally overwhelming for him?  No.  Are they there when he overeats, overreacts, and can't self-regulate at family and friend events because he's so overstimulated and excited to be there?  No.  No they aren't.  But we are.  And we will continue to be there.  And we will continue to work on these skills until one day, no one will ever believe that he has an autism diagnosis or has to ask "What's wrong with him?" or "What does he have?" (and yes, people have politely asked us that).

Fall brought about those big changes.  And guess what?  They weren't that bad.  Matter of fact, they were good.  Really good.  Our oldest son moved into college 2 1/2 hours away.  Our youngest took the field in marching band for the first time without his brother.  I am now my youngest son's ride to and from school every day.  And we are all surviving.  Our oldest is loving his program of study at college.  He gets a break from all of us and the intensity that comes with living with us.  Our youngest not only survived his marching season but was pretty responsible and self-reliant about it.  Many of the older band members stepped forward as a support and resource for him when needed.  (I love band kids!  They are the best!). By taking my son to school and picking him up every day, I lost vital prep time in my classroom but gained valuable one on one time with my son.  He now his an increased window of time at the end of the day to organize his thought and be sure that he has all the materials he needs for homework at night.  We have had very few incidents of forgotten homework, forgotten items.  This is a huge step for him.  He has stepped up and been more self-sufficient and self-reliant.  He is growing as a young man after stepping out of his brother's shadow.

This fall, we also increased our son's ADD medicine by 1 mg.  We were concerned that it would have an increased sedation effect.  Unlike med increased in the past, it did not.  He had physically grown so much that he NEEDED the 1 mg increase.  His body responded very well to it and he has experienced increased focus.

Through all of our personal ups and downs, relationship struggles, diagnoses, etc, my one consistent truth and mainstay was my classroom and my role within that classroom.  My one truth in life is that I am a good teacher.  I "get" kids that many others don't.  All of my almost twenty-five years in the classroom have been with at risk populations.  I am very good at what I do.  This isn't bragging.  It's my truth that I know in the core of who I am.  This fall, for the first time since I was a new teacher, I questioned my ability to effectively help my students.  This year has been my most challenging in a very long time.  Can I help them?  Can I be enough, do enough?  I have had to ask for help; re-examine how and why I do things; read and study topics far outside my venue of knowledge; and step outside my comfort zone.  It has been an emotionally exhausting year.

The blessings that have come from this challenging experience is the addition of a phenomenal third person in my classroom.  She has helped organize my room and my resources.  She has become a friend and someone that I rely on.  I also know that if the kids coming into my classroom, with all my experience and understanding of kids from at risk populations, are this challenging for me, then we as schools and communities need to start examining how we support teachers and classrooms.  Social-emotional learning must become a significant priority if success will be found within today's schools.  You can believe that I will be an even more vocal advocate for these changes within my region.  I will also continue to research and put into place the best practice that research is supporting, to help my kids find success.

And as for the boys and their relationship...
Distance can make the heart grow fonder.  They have discovered a common love for Nerf gun warfare.  At any moment, my two six foot - plus sons can break into full on Nerf war.  Such laughing and yelling and pandemonium!  It's beautiful.  Dangerous for their father and I, but beautiful.

And through it all, my dear, sweet steady husband supports us, loves us, roots for us, and stands for us.  Without him, none of us would find the success that we continue to find.  He is our voice of reason.  Our calm in the storm.  He is our touchstone that keeps us centered.

I wouldn't ask for a repeat of 2019.  I'm glad to see it come to an end.  But the challenges of 2019 have brought about some serious growth and changes that we as individuals, and we as a family needed.  Whether we wanted them or not.  Dear 2020, please be kinder and gentler to us!  We've grown enough for now.  We could use some peace for awhile.

Growth Spurts and Developmental Lags

One of the consistent characteristics of our son's developmental condition has been the inconsistency of it.  A real oxymoron, huh?  He follows large bursts of growth and skill development with quiet plateaus of "normalcy".  About the time we settle into complacency and start to enjoy the progress we have made, it all starts to slide away and he enters what we refer to as a developmental lag.  

We have experienced a rather lengthy plateau over the last year or so.  So much so, that many of his support services have been reduced to a monitoring status or reduced in frequency and intensity.  We have instead started focusing on transition services and the possibility of an independent and self-supported adult future.  His special education team is just finishing up the re-evaluation report of the IEP that will take him into high school.  Our family has moved into more of a support mode and less of a supervision and support mode.

This year has been a year of significant transition and change.  Through it all, our son has stepped up, been fairly responsible, and managed good grades.  We've been beyond proud of the progress he has made.

Two weeks ago, we started noticing an increase in his stuttering, his drooling, and his chewing clothing.  Those behaviors had almost completely disappeared over the last year.  He's identified that he has "squirrel brain".  In other words, he's having trouble organizing the very busy, very active brain that wants to distract him.  This week, we received a message from school that he was behind in a couple assignments.  For the first time since school started, he forgot things he needed for homework and I had to run out to the school to pick them up.  With great communication from his team at school, we got him caught up on his work and helped him re-organize himself.  His stuttering and blocking has increased so significantly that people who only see him on a weekly basis have been absolutely shocked by the serious change in his speech in such a short period of time.  One word answers are almost more than he can manage in the evenings when he is tired.  The facial ticks and other stuttering associated behaviors, like hiding his mouth and fingers in his mouth to hide it as he stutters, have all returned.  Those behaviors had completely disappeared over the last year.  The rapid return of these dormant behaviors is shocking.  Stunning even.

A significant developmental lag has begun.  Maybe the worst we've seen in awhile.

So, we do what we do.  We contacted his education team and updated them on what is happening.  All of his support service individuals are newer members to his team.  They haven't ridden one of these waves with us before.  They only know our son that is happy-go-lucky; disorganized but hard working; forgetful but sweet.  They don't know how deep these regressions can go or the behaviors that he has learned to hide and overcome.  So we warned them of what could be coming.  We prepare them so they know what to look for.

We reach out to our family and friends in our inner circle.  We let them know what we are experiencing.  We remind them of what works to support our boy as he struggles against a body that doesn't work with a brain that is trying to catch up to an eight inch growth spurt.  We remind them what doesn't work and what will only cause anxiety and delay growth out of this latest lag.

Then we try to find the balance between reminding our boy about what tools he has and what skills he has learned to help him cope while not nagging, not hovering, not taking away his new found independence.  We support while trying to avoid dependency.  We remind him to "sli-i-i-de" his speech when he jams up.  We let him talk with eye contact and without interruption so he doesn't feel pressured which only increases the likelihood that he will block up.  We don't finish words and sentences for him.  We let him work it out.  We acknowledge the struggle but normalize it by keeping it matter of fact.  "That was a tough one.  Good job sliding through it bud.  Remember to breathe.  We will wait for you to finish.  No rush."  We keep life as normal and as consistent as we can.  When he needs 500 hugs and tells us a 1,000 times that he loves us, we roll with it and reciprocate because he needs the reassurance right now.  We make sure he is eating good nutritious foods and getting lots of rest.  Then we wait for things to run their course.

These developmental lags used to send me into an internal panic.  I think I feared he wouldn't pull out of them or that he would regress and lose skills.  After fourteen years of riding this wave, it still gives me a sick stomach deep down inside.  But now I know we have the skills to work him through what he's up against.  We have a great relationship with his school and his education team.  We have good family and friend supports.  My husband and I have a solid relationship and know how to navigate this together now.  Our son has built some solid skills to help him work through these lags.  He has also made some friendships with kids and adults who will support him for who he is and know his heart.

Unfortunately, based on the amount he is eating, I don't think we are at the end of this crazy growth spurt that seems to have set off this latest developmental lag.  At only thirteen years-old, he is already six foot tall with size 14 feet.  Hopefully, he will reach his final size and his brain chemistry can finally catch up with all that growth.  In the meantime, we have his back and we will support him wherever this goes and however long it takes.

Resolution

Anyone that has been following this blog for any length of time knows that for thirteen years, our family has been looking for answers.  Our son has had a laundry list of symptoms and characteristics that were loosely grouped together under the diagnoses of Attention Deficit Disorder and Neurological Impairment.  The result of not being able to name why our son was different has left long term impressions on every member of this family.  We have been treating symptoms rather than a condition.

After thirteen years of searching, the technology has finally caught up with us and we have resolution.  We have answers!

Because our primary neurologist has moved to research and mapping the genome in search of  undiagnosed disorders, he is seeing very few patients any more.  Last fall, we were assigned a new Neurology Physicians Assistant.  This winter, while meeting with us, she asked us if we would consider repeating our son's genetic testing that was previously completed when he was a year old.  Her argument was that genetic testing has come so far in the last decade.  She listed the different characteristics that he exhibits and stated that she strongly felt that he had a syndrome of some sort.  If we were willing, she would like to see if research had caught up with us.  After discussing it as a family, we agreed that it couldn't hurt to try.

So, after four months of waiting, the results have come in and we have answers.  And the answers are absolutely, stunningly clear.  His diagnosis fits him like the proverbial glove.  Our son has a gene mutation known as a CHD3- Related Disorder, or Snijders Blok-Campeau Syndrome.  Individuals with this syndrome typically have developmental delays, expressive language differences of unique type (apraxia and dysarthria), macrocephaly (large head size), low muscle tone, joint laxity, and scoliosis.  Our son has every single characteristic of this syndrome, including many of the lesser known, less common characteristics.

Every cell in the human body has two CHD3 genes.  These genes are extremely important to cell function because they are involved in chromatin function within the cells.  It only takes a mutation to one CHD3 gene in one cell to cause major developmental issues in developing fetus.  Our son's particular mutation replaced an "A" with a "G".  The result was a previously unreported mutation of the CHD3 gene.  In other words, he is unique, an original.  But we already knew that. 

So....

What does knowing mean?  Why is it so important to us to be able to put a name to the condition?  Why does it matter?

Knowing changed everything.  And nothing.  The moment the geneticist shared the results with us changed our entire world.  And nothing at all.  I know that doesn't make sense to most of you but to us that paradox is our absolute truth.

For thirteen years, we asked ourselves if we caused our son's differences.  For thirteen years, we questioned every single decision we made because we were operating without an operator's manual.  Our decisions were guesses.  The news was beautiful and devastating.  It brought us peace as it tore at our hearts.  My husband and I have shed a lot of happy tears over the last few days. 

For a very long time, I felt very alone on this journey.  It's the primary reason I started blogging.  I never wanted another parent out there living without answers to feel as if he or she were alone.  Because if someone else is walking your journey, it's not just you.  Someone else out there "gets it".  As I have shared in the past, my husband and I didn't always agree on what to do to help our son make progress.  My husband isn't an educator.  He doesn't speak the language or understand the steps in child development and how they play out.  Unfortunately, I do.  All too well.  And the writing on the wall was very clear to me that without significant interventions, our son was going to quickly, and happily, fall far behind his peers.  So I pushed forward.  Through the arguments that I was looking for something to be wrong with our son.  When he and others told me or implied that our son just needed more time to grow and mature.  When we didn't see eye to eye and struggled with our marriage.  I persisted because I was a mom and I wasn't going to accept less than the very best for my child.  He would learn.  He would develop.  No one was going to give him less than their best.  He deserved it.  So thirteen years later, when the geneticist told me that there was a name for why my son was so beautifully different, I cried.  Truth be told, I sobbed all the way home.  Because I didn't give this to him, I didn't cause it.  My extreme morning sickness through all nine months of my pregnancy didn't deprive him of something or traumatize his formation.  Because those years of feeling so alone were worth it.  Because those years of pushing doctors, pushing therapists, fighting with insurance companies, pushing teachers, educating family members, educating people in his world, mattered.  It wasn't imagined.  It wasn't exaggerated.  It was real.  And no mother ever again has to wait thirteen years for answers if her child has this condition. 

For thirteen years, I think my husband has secretly carried the burden of blame.  My husband is a brilliant man who barely made it through school.  He can look at any problem and quickly, succinctly come up with a simple, direct solution.  He invents and creates adaptations to existing machines to make them better, more efficient.  But he struggled in school.  It wasn't his thing.  The original genetic test that was completed when our son was a year old showed that both my husband and our son had a small duplication on a section of their 17th chromosome.  Because my husband had minor learning issues but none of our son's other "quirks", it was determined that duplication probably wasn't the cause of our son's issues.  But secretly, my husband blamed himself.  When the results were shared this time and it was clear that neither my husband or I had the gene mutation that our son carried, that it was a mutation unique to him and his development, it was like a burden was lifted.  Blame was put aside.  Our son was beautifully and wondrously made for a purpose. 

As our oldest son prepares to graduate, he is planning the next phases of his life.  For two years now, he has been in a rather serious relationship with a lovely young lady that we all love.  When he received the news of our son's diagnosis, one of his first responses was to share the results with his young lady.  Because they both have food allergies and she has some health issues, it was a relief to learn that they had one less thing to worry about in the future if they decide to start a family together. 

The geneticist that we worked with was great.  She made sure our son, my husband, and I all clearly understood the results and what they meant.  She even had our son summarize for her what he had heard her say and what it meant to him.  When asked how he felt about the findings, he responded, "I always wondered why I was different.  Now I know.  But it's okay because I'm nice and a lot of people aren't even nice people."  And then the geneticist cried. 

These findings mean nothing at school changes.  He continues to receive learning support.  We keep pushing him to do his best and work harder.  We keep helping each new team understand him and how he learns best.  We advocate for him and help him learn to advocate for himself.  As he transitions to high school in a year, we start the process of preparing him for greater self-sufficiency.  What that means, is yet to be determined.  There will be future relationship and family implications but we are far from needing to address that yet.  As we have done for thirteen years, we put one foot in front of the other and address each obstacle as it appears.

The name Snijders Blok-Campeau Syndrome, CHD3 Related Disorder, brings resolution.  It brings us a degree of peace.  It changes nothing.  But it changes everything.  One thing it doesn't change is how incredibly blessed we were the day the Lord gave us our son.  He was wanted.  He is needed.  He is unique and beautiful in every way.  I don't tell him often enough how incredibly lucky I am to be his Momma.  God sent him to do beautiful, amazing things.  He changes hearts.  He spreads love.  The world is a better place because he is in it.