Last week, I wrote a post about our son’s recent diagnoses of moderate ADHD and mild (Level 1) autism. I also talked about how we hadn’t told him of his new “labels.” It still stings a bit to discuss this, even though I know he’ll be a GREAT human. It’s always challenging to hear a new diagnosis, no matter how mild or invisible to others.
Shortly after publishing that post, I received several texts and emails of love and support from family, friends and clients. Those meant the world, and helped ease the overwhelm of what we’re now managing for Damek’s treatment and supports. A friend of mine sent me a link to a video that changed my mind on keeping this information from Damek, and anyone else for that matter. Please take a few minutes, and watch this video. It’s what we showed Damek to begin our conversation about telling him he has autism.
Damek looked up at me from his chair, curious and wide-eyed as he was trying to understand why we were showing him this particular video. He asked, “Mom, does Hudsyn have autism?”
“No, sweetie,” I said, my heart pining to wrap him up in my arms and protect him. I knew this moment was inevitable, but I felt a large desire to not continue the conversation so I could freeze his brain in that sweet and innocent state.
“Does dad have autism?” his brow now furrowed, thoroughly confused.
“No, Damek, you have autism.”
“No, I don’t!” he loudly shouted.
I was a bit baffled by his defiance, but remembered he thinks visually so this was difficult to grasp. (Like I said, no one likes getting a new label.)
“Yes, honey, you do,” we echoed together.
“Prove it!” He exclaimed, almost angry now.
“Do you remember spending time with the doctor at Children’s Mercy?” Dan said.
Damek nodded. Dan continued, “She helped us learn more about this, and it’s not a bad thing, buddy. It just means your brain works a little differently than others.”
Damek became quiet, trying to decide how to respond next.
I scooted a little closer to him, and said, “You know how easy it is for you to know cars…the make and model of every car you learn is something that sticks in your memory forever. You can spot cars on the road when you and dad are driving, and you’re so good at it!” He nodded, smiling a bit.
“Not everyone can do that, but your brain can,” I said. “And your brain has trouble with certain things that other kids have an easy time with, like having conversations without asking repetitive questions.”
“Oh,” he said.
We reassured him that his brain is amazing, and that he will be great at a lot of different things. Remembering to work in some gratitude practice, we also reminded him (and ourselves), “Isn’t it nice that we are ALL different, and that God didn’t create us to be exactly the same?”
He smiled, and agreed. We asked him if he had any questions and he asked, “Is this why I go to Dr. Alex’s office now?”
We nodded.
Dr. Alex is one of his many supports we’re beginning to put in place. He is a neurofunctional chiropractor that specializes in helping kids like Damek and uses a variety of therapies and modalities to encourage brain stimulation. Watch the latest episode on our YouTube channel as Dan showed our first visit to Dr. Alex’s office.
Although Damek had some initial shock, we felt the conversation went well. It ended in the typical fashion as Damek stated flatly, “Can I go play on my iPad now?”
“Sure, but only for a few more minutes,” we said. “It’s about bed time.”
The above video and conversation is one more example of why it’s so important for our kids, (and all of us as adults) need more education on the world of disabilities and medical diagnoses.
Understanding = Acceptance.
Acceptance = Empathy + Love.
It is impossible to have bullying, abuse, and isolation where there is a world filled with empathy and understanding. They can’t co-exist.
It’s each of our own responsibility to make sure our kids are raised in an environment of love, understanding and acceptance no matter what challenges they face. That includes all of us, not just those of us who are parents.
“The beginning of wisdom is this: Get wisdom! Though it cost all you have, get understanding.” (Proverbs 4:7)
“They are darkened in their understanding and separated from the life of God because of the ignorance that is in them due to the hardening of their hearts.” (Ephesians 4:18)
When you know more, you do better.
And, as we say at the end of every single YouTube episode, “To the world, you may be one person, but to one person you may be the world. So go be somebody’s world!“
Hi Seitz family! I have been watching your vlogs for years. I have watched Damek grow. I have a son, 11 years old and I need to start the process of trying to figure out what is going on with him. I have always thought he may be mildly autistic. He knows his cars like Damek! He also has some learning difficulties, I think ADHD/OCD. How did you even begin the process of finding out Damek’s diagnosis? My son has his annual physical in October. Is bringing my concerns up to his pediatrician a good place to start? Thank you for sharing your story.
I took my son to a pediatric developmental pediatrician they did a complete evaluation found him to have ADHD obsessive compulsive disorder and a little bit of oppositional defiance disorder along with high functioning Aspergers with developmental delays but he was also born with a portion of his chromosome nine missing causing disabilities he was also born with pyloric stenosis which was corrected by one month 12 days he also has Legg Calve Perthes disease and his left hip went to shriners hospital in Philadelphia great place did wonders had surgery was in a petri cast for just one month with the bar between the legs but he did great he just turned 21 August 11 He’s a lot to handle he does argue and he does have a mouthful but otherwise he’s a great kid . I hope everything works out for Damek . I hope and pray that everything works out for Hudson‘s video EEG my middle son and my older son’s were also born with the missing chromosome nine and have other different diagnoses my older son had open heart surgery for PDA when he was 14 months old in New York City Presbyterian Hospital back then it was open-heart now they have another way which so much different and better . He was also born with developmental hip dysplasia and metal tarsal adductus . Directed surgery at seven years old . Visually impaired wear his glasses full-time . He was also born with Chiari one malformation will need decompression surgery down the road possibly has seizures at night . Still looking for a neurologist also had surgery on his spine Born with two herniated disc‘s possibly even more . Will be 30 years old March 11 . His name is Joey . My middle son was born with Chiari one Malformation found his at 18 months old my older son we found out in 2016 but my middle son we found his due to having generalized grand mal seizures at 18 months old. Had tubes in his ears due to chronic your infections lots of allergies need to move to some desert . Developmental delays same with my older son they’re both also missing chromosome nine portion of it . I’m not the carrier turned out their father was but he’s OK he’s fine no problem all three of my boys were born healthy and everything it was just every time I took them to their well visit to the pediatrician they would find something new with them . Until Jason‘s developmental pediatrician did a chromosome test on all three boys and myself and their father . A lot of doctors specialists and they all went to school went through a speech PT add OT . As special programs after school extra help my two older sons are doing right now they’re in the fire department they went to school like college local and volunteer for the community response teams . My middle son drives my older son still trying to pass the written test just taking time my youngest son literally passed a written test on his first try at the high school and his autism class but we never got the chance to do the drivers test so he would have to do everything all over again too much for New Jersey . My younger son Jason has also been suffering from depression or anxiety seeing a therapist we all had COVID-19 back in December 2020 but I also lost my father to COVID-19 April 26, 2020 very devastating to my whole family and my mother and my sisters . Joseph Metallo governor Phil Murphy did a memorial for my father it’s on his YouTube channel . We pray every day for your family we love watching your channel also . I am so happy that you actually teach us that there are plenty people out there with disabilities and that people need to learn more about this specially with autism with my younger son he has his outbursts in public sometimes and people look and they just don’t understand it’s just because of his communication he misunderstands a lot . But I thank you for the courage and helping other families with disabilities . Sorry for this very long story . I also had a learning disability growing up I was in special ed classes but I’ve worked all my life and now I am a supervisor of the Crossing Guard s . I watch your shows all the time through that Facebook . Thank you again. Colleen Metallo.
Hi, Seitz Family!!!
I have just discovered this blog and I am pretty amazed by it!!!! I also have a mild form of autism, but have made a lot of progress in my 44 years of experience. I hope that everyone can accept who they are and as Mister Rogers said “I like you just the way you are.”