2018: My first successful New Year’s resolution- make it yours too!

I started 2018 with a New Year’s resolution to heal my son. This was supposed to be my Christmas post.   However, I thought it more fitting as a close to this year and sum up where we were and how amazingly far we have come.  I will start with comparing this Christmas to last year’s.

Last year Nathaniel was nonverbal. He was not interested in opening presents, he did not understand the concept of opening presents or of santa claus. Even with prompting, he wouldn’t tear open presents and would just walk away. I am not minimizing or sugarcoating things anymore. This was our life. We were just happy he didn’t cry when sitting in Santa’s lap. No matter how many times I read the night before Christmas, it just didn’t register. This year, he asked santa for “presents,” he was actually interested without prompting in opening gifts and could understand the concept of santa. We went to midnight mass and he said hi to anyone that would listen. Santa told him he was on the good list, so for weeks he would repeat he was on the good list. Last year he was the equivalent of a one year old.

This past year has been nothing short of a miracle for us. We started out 2018 with our D-day (diagnosis day, my first post), with uncertainty, with no clue where to go from there, what the future held for Nathaniel.  I had finally figured out what he was doing when he was running back and forth (he was following lines and patterns).  I noticed he would squint and look at things from the corners of his eyes, and figured out (through research) that was another form of visual stimming.  Every night as soon as Victoria would fall asleep, I would get on my phone and research until my eyes literally gave out.  I joined every single support group on Facebook.

I spoke to my father, who is a psychiatrist about all of the symptoms we were experiencing, because I knew he was big on researching and was constantly reading medical journals (like literally in his every waking moments too), he told me about high dose fish oil and prebiotics and planted that gut health seed. 

February was about the time where we lost Nathaniel for about 5 minutes of pure hell in the airport in Santiago, Chile.  He had run off following a line on the ground and I found him in a corner by the suitcase conveyor belts.  It was the most terrifying moment of my life.  Running through a sea of people screaming his name, my heart racing. I had just gotten over postpartum anxiety, where I had panic attacks from visions of awful things happening to my kids, and there I was, all of a sudden, this was a real one.  That overwhelming feeling came back, except this time luckily it did not cripple me I ran around screaming already far into the vision of being at a Chilean police station.  I found him scared and crying. 

We have always loved traveling with him, because although the plane rides were never fun, he always seemed to make a break through on each trip we took.  The Chile trip was the first time he ever touched an animal.  He started playing with cats and genuinely seeking them out, instead of just following lines.

He started the special education pre-k the day after we got back.  We stayed there until the school year ended. He made small amounts of progress, but nothing major.  He still would not stand next to another child and was not interested in other kids.  He would not participate in circle time, and would sit on a rug in the corner.  In the midst of the school, here I was calling the neurologist, whose first appointment was 5 months out, calling over 25 ABA places and getting some calls back, waitlists for at least 3 months, occupational therapy.  We started going to the chiropractor twice per week at this point.  That started helping him with handling touch.  Several months later, after months on waitlists for therapies, the school year was ending and we had our first ABA evaluation.

I was desperately looking for something for the summer for kids with special needs, but there was nothing.  I did not want him to regress.  The ABA therapist suggested a Jewish Temple school, a highly structured neurotypical normal preschool. I went there the very next day and KNEW this was where Nathaniel belonged.  They loved him and accepted him with open arms.  I buckled down that very weekend, took him out of his diapers and I potty trained him.  I literally thought that would never happen.  Someone suggested cod liver oil in one of my support groups for visual stims, so right about this time (beginning of June), I started giving him cod liver oil.  In a week he started putting 2 and 3 word phrases together clearly (at this point he only had single words).  This was around the first time he actually called me mommy for the first time too. Hearing that magical words for the first time was just indescribable.

He started summer camp at his new school.  I went and peeked in one day and saw him holding hands with another boy who was taking him over to play with blocks.  The preschool director was like see he fits right in, he’s doing great! The tears welled up in my eyes, I quickly went to my car and bawled (they probably thought I was a weirdo haha).  This was really happening, he had friends, he was letting a child guide him and touch him.  Words cannot describe how my heart fluttered when I saw that.  We started ABA; his awesome therapist went to school with him twice a week.  I had researched gut health a lot and decided to try the Nemechek protocol, which was essentially what my father had suggested (this will be my next post).  We started Nemechek July 1^st. 

Within 2 weeks, Nathaniel was much more emotional, sensitive, he started asking us to cuddle.  Another issue we previously had, was he couldn’t seem to feel or express pain.  Now, he started coming and asking us to kiss his boo-boo.  Up to now, he would push his sister, he was pretty aggressive with her, to the point they couldn’t be in a room together alone.  He pushed her off of a high bar stool and she fell on the floor and he literally LOST it and started crying and screaming he was sorry and “I wont do it again mommy” He felt empathy for the first time. He started asking me what things are.  If you have a neurotypical child, I know these things may seem so basic, but every little bit of progress is amazing.  Of course, as some symptoms improve or resolve, some others pop up.  Having a developmentally delayed child, teaches you to cherish every little thing, it teaches you patience, grace, kindness, and unconditional love.  We started the year with a diagnosis that shook us, nonverbal, with a son who was staring out of the window for hours, or at ceiling fans, waiting for us to reach in to his world and bring him into our colorful, fun, interactive world with us.  We are ending this year with a son who is with us, who pretends, who bosses his little sister around, who takes himself to the potty, asks us to “cuddle cuddle.” he can point and wave, and knows his letters and numbers!  What an amazing year.  It makes me emotional to think about how we started 2018 and how we are ending 2018. 

I am grateful and blessed for progress, for my amazing son.  He is teaching me more than I could ever teach him! Am I stressed everyday? Yes, we are in a critical delicate balance of therapies, interventions right now. My every moment is accounted for between working full time as an attorney, taking him to all of his therapies, being a wife, and mother to my other baby too. By no means have we reached the finish line. But, I feel like we are on the path to get there. If anything changed, it would disrupt the balance we have achieved that is allowing him to make this constant progress. Love to you mamas that are struggling with uncertainty, or feeling isolated.  I’ve been there, you never know progress if you don’t take the leap and start.  Let this be your New Year’s resolution.  It was mine last year and was the only one I have ever succeeded with. It is a tough resolution, but the results are priceless.

Cheers 2019- you have your work cut out for you!