So recently, Life of Dad did a beautiful video of our story. (Shown Below)
They did a fantastic job. I gave them hours of footage and audio. Almost 10GB of media to condense to around 5 minutes. They did a phenomenal job curating and editing and got the heart of what I wanted to say. I love the video.
But I wanted to take the time here to share the FULL unabridged version with you. I wanted to put our whole parenting journey up to now in one place. And this is it. Some of this has been excerpted from other things I’ve written in the past, but all of it is from the heart.
For those willing to take the journey with me, enjoy!
I’m Jason and this is our story.
My wife and I always wanted to have 2 kids. I didn’t know a lot about parenting, but I knew we would figure it out together.
But the “idea” of having kids and actually “having kids” are two different things.
Two VERY different things for us.
Our introduction to parenthood was a trial by fire.
Jonny, our oldest was born with a cleft palate and bilateral hip dysplasia (which basically means his hips were dislocated at birth).
He had 4 surgical procedures before he was a year old. They put a cast on him from his ankles to his armpits that he had to wear for 3 months. You can only imagine what it was like to change him (You can’t wash a cast).
On top of that, he was a very colicky baby, sometimes crying 12 hours through the night. My wife and I used to take nightly shifts with him and we would get into fights about whose turn it was to get up, or “who’s had less sleep.”
That was our introduction to “parenthood.”
At the beginning, we had to sort of trudge through it, though we had lots of help from friends and family. My in-laws once drove 4 hours just to take him and kicked us out of the house into a hotel for a night so we could just get a full night’s sleep, even though they had a baby of their own. You can’t ask for better family than that.
As Jonny got older, we were also introduced to “early interventions” and special needs resources. Jonny’s muscles had atrophied while he was in his cast. He was only 20lbs at 18mos, which is less than the 3rd percentile for his age. So he was referred to a local developmental center to work with numerous specialists.
He worked very hard and little by little we began to see progress. He graduated from the program and was placed into a specialized developmental preschool where he continued to show improvement.
But going through that with your first child really takes a toll on you as a parent.
We waited a good 5 years after Jonny was born to have another baby.
When Jonah was finally born, we figured, by then we were parenting “pros.” Jonny had worked through the issues with his hips and his palate. He had started kindergarten and was making friends. Jonah was the image of perfect health. And for the first couple years after Jonah was born, everything was great.
But we noticed that Jonah was behind developmentally and had even started to regress in some areas. His speech had regressed to a point where he just couldn’t verbalize anything anymore. He had also started lashing out aggressively and having inconsolable meltdowns.
When Jonah turned 3, we got an official diagnosis of Autism, and it was a punch in the gut. There are 3 levels of severity for autism. Jonah was diagnosed at level 3. SEVERE AUTISM.
I literally couldn’t believe it. I had all these dreams and aspirations for my kids and none of them included “autism.”
We had come so far with Jonny and worked through it all. I had assumed that Jonah was going through a “phase” and we would get through it the same as before.
But autism is not something you can simply “get through.” It’s a completely different “neurology.”
As a parent, the scariest thing to think about is that something that I cannot control will have a direct effect on my child’s successes and failures throughout his life.
So I went through a period of “mourning,” where I was crippled by fear and anxiety about the future.
But when I realized that I was bringing my whole family down, I made a decision to change my attitude.
I would choose to see this as a grand opportunity. Instead of limiting my son’s capability and mourning the “lost potential,” I chose not to put Jonah in a “categorical box” and see him for who he really IS, not mourn who he was not.
So we got ourselves on waiting lists for autism services.
Unfortunately the waiting period can be ridiculously long. The shortest waiting list we found was over 9-months.
Undeterred, we started using an online tool called Gemiini, a learning tool for those with developmental disabilities which models basic words and actions on a screen. It was at least a proactive step. Something we could do ourselves.
Jonah took to it nearly instantly. He wanted to do it all the time.
It helped with recreating situations in everyday life, (like a bed time routine), labeling what the situation involved (like the word “bed” or “brushing teeth”) and modeling appropriate responses (someone actually going through the bedtime routine).
And as he watched the different videos in the program, we began to see him modeling word after word, and even imitating “actions” like “waving” or “dancing” which is something he had never done before.
When I finally took the time to look, I found that the sky is the limit with this kid.
Within 2 months, he had gone from a one-word vocabulary to a 25 to 30-word vocabulary.
We enrolled him in a developmental preschool and he loved it. He got along well with the other kids and even participated in group activities.
But I’ll never forget the first time he said my name when I called him and ran to give me a big hug. With autism, you learn to celebrate every victory no matter how small, so hearing my nonverbal, autistic son saying “Da-da” is a memory I will cherish for the rest of my life.
Jonah has just turned 4, and in the past year, he has continued to progress phenomenally. We were finally able to get him the services we had been waiting for. His 1 on 1 therapist would estimate his vocabulary at 75-100 words. He can count almost to 30. He is working on his “ABC’s” and colors, and matching.
He loves interacting with us and other kids and loves playing jokes on us. We were even able to take him on a trip to Hawaii and he absolutely had a blast.
But it’s not been all “sunshine and rainbows.” We still have to deal with the harder realities of autism. Jonah can still have huge meltdowns that last hours at a time. Anything has the potential of setting him off. Also, there is always a very real chance of developmental regression. But we have learned to accept it. We have learned to accept Jonah’s autism. All of it.
One comment that I get a lot is “I don’t know how you guys do it.”
To that, I say, “This is just our journey. Our mountain to climb. Some people’s mountains will be steeper than others. Some will be easier. And that’s fine.”
Our family has had to just learn to adapt to a “new” level of “normal.”
My wife has a natural heart for people and has been in nursing for nearly 15 years. She works full-time as a nurse manager in Critical Care, which (as you can imagine) can get pretty stressful as it is. I work from home as a graphic designer. So while my wife is working at the hospital, I juggle my own work, parenting duties, and therapies for Jonah, 5 days a week.
Jonny has learned about autism firsthand. He’s had to endure the hour-long meltdowns in the car with us. He’s made sure that other teachers and kids are aware of Jonah’s autism so they are more understanding. He will even give me words of encouragement when I am feeling particularly exhausted. And he is his brother’s biggest advocate.
We have had tremendous support from family. My parents will step in and take the kids when we need a break. My sister, who is a para-educator, will come over to tutor Jonny and show up with a home-cooked dinner for us. She and my parents will come over if we go on a trip and sneak in to clean our house while we are gone.
The love and support of a family is one of life’s greatest blessings. We all understand that we truly are ALL in this together.
We can’t compare our journey in life to other people. Everyone has a different path.
What is it we compare against now? Yesterday.
We are striving to make today a better day than yesterday.
We obviously still have our issues, but we are working hard to better ourselves each day.
I’ve come to accept that Jonah is Autistic, but also that autism is not limiting of his potential. They say that Einstein, Mozart, and Isaac Newton may have had autism. And maybe Jonah won’t be the next Einstein, but I will always push him to do more than I had previously ever thought possible.
Parenting my two boys has taught me to look at life from a completely different perspective.
I’ve also learned to take hardships with my kids in stride.
So when I hear things like “Jonny is missing 8 permanent teeth that will just never develop; and that he might also have pretty severe learning disabilities, my response is… “Welp… Add it to the list.”
We have already been through so much with our kids that new “challenging issues” that arise just don’t seem as traumatic as they once would have. We are already climbing the mountain. New challenges are just another part of the mountain we get to climb.
Life is hard sometimes. Life is also unfair.
That is not an observation. It is a fact. The true test of our character lies not in how we react to the adversity that will inevitably happen, but how we handle and overcome that adversity to grow as a person.
edit: Here is my official review of Gemiini, after 3 months or so of using it.