This year, I watched it differently and it was unexpected.  First, let me start by saying that this year for my family has been an out-of-control train ride.  First the pandemic.  Nothing more to say about that. Just prior to the start of the COVID outbreak, things changed.  We live the puzzle with my 16-year-old son.  But those pieces just do not want to stay together.  Puberty, hormones, frustration- everything erupted, and we began living with an unrecognizable human being.  The sweetheart that I would watch Sesame Street with became the Tasmanian Devil, the Incredible Hulk, with a dash of Elmo to top him off because I know his gentle and funny soul remains in there somewhere.

Josh Groban said it best as he sang Believe.

Children sleeping  
Snow is softly falling
Dreams are calling
Likes bells in the distance

There hasn’t been much snow yet, but I made my own metaphor out of this. To be honest, I keep so much to myself.  I don’t want anyone to look at my son differently and when the going gets rough, I retreat and find it hard to talk about things. And everyone has their own struggles.  Mine are no different from anyone else’s.  Anyway, I’ve been asked on occasion,” How are you handling things?” The answer is in the lyrics.  Reflect on the calm and quiet. Look at old pictures of my children sleeping.  I have so many because watching my son and daughter sleep has always been one of my top favorite things to do.  In case you are curious, yes, I have been schooled on how creepy and weird that is by my 14-year-old daughter.

I dream about when my family can feel stable, whole, and at peace again.  But like the bells, I can dream about it, but it is still in the distance.

We were dreamers
Not so long ago
But one by one
We all had to grow up

Reality hits.  When I was younger, I had the typical dream of getting married, buying a house, having children.  Like many others, I assume, I never thought about hardships but focused on the concept of the ideal family.  As speed bumps came along, I dealt with them and put them behind me, and moved on.  With each bump, I grew more and differently.  

Then comes the autism diagnosis.  I addressed our road to the diagnosis in a previous blog, but just to recap- my son was a preemie.  He was born at 23 weeks’ gestation and weighed 15 ounces. A death sentence 16 years ago.  For years, we expected developmental delays and he needed time to catch up.  So, his autism diagnosis came much later and wasn’t recognized right away because he had so many other medical issues.

My dreams weren’t shattered.  I had to find new dreams, new goals.  Each day, each diagnosis, each escalation, each hug, and kiss- all of them- has made me grow up into someone I never thought I’d be.  A nurse, an advocate, a teacher, a bodyguard all rolled into one.

When it seems the magic slipped away
We find it all again on Christmas Day

Believe in what your heart is saying
Hear the melody that’s playing
There’s no time to waste
There’s so much to celebrate

And give your dreams the wings to fly
You have everything you need
If you just believe

For us, the magic has slipped away, temporarily.  We are blessed to have services and programs at our disposal to help with these behaviors.  We had to make the difficult decision to remove him from school and admit him to a day partial- hospitalization program. It is best for his future and we really had no other options. 

I’m having a hard time decorating this year.  This is by far the most trying time in our lives.  But it’s time to shake it off.

Christmas has always been very special to my family.  It is when we are at our happiest.  Scratch that. It is when I am at my happiest. (Happy wife=happy life, right??) The magic, the decorations, gift-giving, and Christmas Caroling.  People come together to help charities and children in need. It’s a reminder that there is still goodness in this crazy world and it’s time for my family to reflect on important lessons. 

Despite where my son is on the Richter scale, we have so much to celebrate.  We are learning new skills and given new tools to help him; no matter what is happening, he still tells me he loves me; I hear him laugh every day; I watch my daughter include him in activities, and my husband always makes sure we all have what we need.

Josh was right. “Believe in what your heart is saying”.  Everything will be ok.  Maybe my dreams and visions for the future will need to be altered, but that’s ok.  I will give my dreams the wings to fly because I do have everything I need.  My new dream is to look forward to one positive, productive day at a time.  That is our new future. And I do believe.  You have to.  Believe in your gut, your heart, and believe in your children.

Trains move quickly
To their journey’s end
Destinations
Are where we begin again

Ships go sailing
Far across the sea
Trusting starlight
To get where they need to be

When it seems that we have lost our way
We find ourselves again on Christmas Day

If you just believe

Just believe

Read more of Ellen’s “Living the Puzzle” series discussing being the mother of a child on the spectrum: Living the Puzzle: COVID-19 Edition and Living the Puzzle: Back to School.

When I hear the word “step” and then “dad” I envision a space or a gap between the man and the role of being a dad.  The definition of a step is the act of placing one foot in front of the other or one part of a process. The act of taking a step is walking toward, or many times, walking away from something. A Step-dad has that choice; they can walk towards and be fully involved, or turn away and leave plenty of room between themselves and the role of being a dad.

In a family with an autistic child, whoever has the honor of being welcomed into their family must walk on solid ground.  They have to be involved with routine, behaviors, rewards, consequences, and whatever else comes with the territory.  To not be involved would be tragic to the child and everyone else around.  It’s not for the faint of heart.  Who would voluntarily put themselves into such a situation? ……a saint and a real, true man, caregiver, and caretaker.  Very rare to find today.

I was blessed to find one of those.  A needle in a haystack and he is my husband.  Yes, my children have a relationship with their biological father and I am not discounting that.  But, as biological parents, my son, who is on the spectrum, is our responsibility.  God doesn’t allow you to choose what he would look like, his health, his interests his disabilities, or anything.  But my saint that I found, he chose.

It’s Not Easy

It’s not easy being a single mom with a disabled child. From the beginning, I told my husband that he would never be first in my life and that, at times, all of my energy will be focused solely on my children.  His response:  “I wouldn’t have it any other way.”  I was very transparent about what the future could look like. I didn’t paint an appealing picture.

I expected him to slowly fade away and then go away.  It didn’t happen.  Instead, he would be the first to call me after a doctor’s appointment or therapy appointment to ask how it went.  He was inquisitive and wanted to absorb as much information as he could.  He wanted to be involved in every way, but more importantly, he wanted to understand.

I fiercely protected my children and wouldn’t introduce them to just anybody.  However, my husband kept asking and asking and asking and asking.  He wanted to meet the greatness that I so proudly spoke of…my son and daughter.  I spoke of the unconditional love that my son provided and his humor….oh…his humor.  He made me laugh when I needed it most.  And my daughter, one of the strongest and determined little spitfires to grace this earth.  He chose.

An Unbreakable Bond

As time passed, I watched my new family unit, play, laugh, and create a unique and unbreakable bond.  The patience, guidance, and support that he provides my son with every day have had a profound impact on him.  Through it all, he has supported, loved, and cared for us all.  It has not been an easy ride and we have faced more challenges that I could never have anticipated.  It seems like there is always something else right around the corner.  I know he could’ve left at any time and I quite frankly wouldn’t have blamed him. He has said so many times that he doesn’t feel obligated and he wants this life with us, the good, bad, and the ugly, but he chose.

My son is 15 and things are not easy right now.  We are going to be entering him into a partial hospitalization program at an Autism clinic.  Blame it on COVID, hormones, or anything really.  He needs to reset, regroup and receive some intensive therapies.  This is the lowest of low for us as a family. He has cried with me, researched with me, hugged me.  More importantly, he is sure to chisel time away to spend with my daughter, who is also affected by this decision.  Again, it takes a special man to fully involve and invest themselves into these responsibilities.

So, as Father’s Day approaches, it is typical to salute and sing praise to the many deserving and loving fathers that grace this earth.  What about those men who chose to love and accept autistic children and all that it comes with?  What about the men who choose to look at these autistic children like they are a blessing and to love them to the moon and back?  I am truly humbled and grateful for my husband.  There are no steps between him and my children.  He chose.

Read more of Ellen’s “Living the Puzzle” series discussing being the mother of a child on the spectrum: Living the Puzzle: COVID-19 Edition and Living the Puzzle: Back to School.

I’ll Take the Corona…..You Can Keep the Virus

Wine, chocolate, junk food, yoga, running, meditation; whatever you need to de-stress….it’ll become your best friend if it isn’t already. As an Autism mom, I can easily handle a snow day. Maybe even two in a row. I’m not a rookie. No problem. I get through the day and then reach for the chocolate (which happens to be my poison of choice). Don’t misunderstand, having a child on the spectrum isn’t always chaos. But during the good, stable times, it is still time-consuming and exhausting, nonetheless. Prompts, redirection, help with homework and don’t forget it takes so much longer to complete daily tasks and life skills because I include him and teach him every day. This is our norm and I love it. I love watching him beam with pride because he remembered to put everything in the mac and cheese. But after working all day, yes, it can be a lot.     So, throw a pandemic at us, why don’t you? At least with vacations, etc. we know the return date. Let’s face it, no one has a clue. When we know what to expect, we have time to adjust the routine. Right now, we are told April 7, but other cities are closed until May. Listening to the news last night, some mayors wouldn’t be surprised if schools didn’t re-open at all and finished out the year with distance learning. Oh, that’ll be fun.

Routines are Helpful

We survived day one of no school unscathed. I did let him sleep in (He is 15. Teens sleep). I’m trying to keep his day closely aligned with a school day or week. He got dressed and ate breakfast right away, like normal. Let’s face it. If I tell him to sit and do work when he doesn’t have to….not happening. Thankfully, my son is very inquisitive. Always has questions to things I have no clue about. He watched Animal Planet and there was a show about a St. Bernard. I told him to google St. Bernard and find out more about this breed. He did. Well, now I’m onto something. Next up, the History Channel. Then, Google. Phew. He hasn’t caught on yet that I’m trying to keep him in a school routine, keep him off of electronics, etc. I’ll add in projects and crafts and practicing soccer skills outside as time goes on. In his class, they earn points through the week to watch a movie on Friday afternoons. So, we implemented that system at home, too.

Stay Strong, Parents

There’s nothing we can do and this is out of our control. Cancelling school was absolutely in the best interest of the public. We are the parents, we know our children. We are their comfort, their support, their safety. We’ve handled transitions before….granted, not for this long. Chocolate, please….STAT! Stay tuned for scenes from the next episode…… Read more of Ellen’s Living the Puzzle Blogs: Back to School and Autism Awareness from a Parent’s Perspective. You can learn more about the Autism Spectrum here.