Celebrate the good days, learn from the bad ones.
It’s always been our approach with Carson, who has a rare disease called Duplication 7 and Autism. With rare disease day on Feb. 28, I thought I would explain what exactly his. disability is officially because the day’s intent is to educate.
Soon after Carson was born in 2009, we knew something was different. When he was 3 years old, we learned through genetic testing he had a duplication of chromosome 7. It’s an abnormality with no cure that results in major developmental delays, anxiety disorders, social phobias, speech and language delays, ADHD, psychological impairments and cardiac and renal defects. A few years later, after we realized his therapies and care would not be covered by insurance, we were advised to have him tested for Autism. We received that diagnosis 30 minutes after walking into the doctor’s office.
It’s oftentimes easier to explain our child as autistic, rather than having dup7. It doesn’t matter to me. I could care less about labels. I just want what is best for him. If having a diagnosis of Autism will allow him access to more services, then that’s fine.
All I know is our family is on an uncomfortable journey that makes our life a roller coaster ride. We have incredible highs and disturbing lows, not unlike most families truly.
Without question, some families have it easier, but we all have our challenges. None of us really knows what’s happening within each house. My sense is most parents have serious concerns about their kids. The severity of these issues is what separates us.
For our son Carson, who is now 12, we keep it simplistic. If you see me dropping off my son and walking away from the school smiling, it’s because not all days go smoothly at drop off and I am relieved. Sometimes he closes my finger in the car door because he doesn’t want to get out. It happened this week. There are some days I carry his bookbag and his stuffed animals to the school because he’s struggling, it’s pouring rain and wants the umbrella. Other times, which happened this week, I have to leave car door widen open in the doctor’s office parking lot across from school because he’s having a fit about something.
I count my wife and I as patient people, but there are days when the disability gets the best of our son as well as us. All we can do is be there, support him and cheer him to be his best self. We win now more than we did at one time. No matter, we learn and get better. I think he does too.
In advance of a trip to a Universal Studios, we have been binging all the Harry Potter movies.
Because of our full plates, we knocked out the eight movies slowly but surely. Beckett has read all the books and is the most knowledgeable in the family for sure.
Over the last couple weeks, we worked our way through the movies in one hour to 90-minute increments. It’s usually because if we start the movies after 9 I am only good for an hour or so after a long day. One night this week I was not alone.
One night this week we threw one of the movies on shortly after 8:30 after Carson went to bed. I realized I had fallen asleep about 9:45. I figured Pam and Beckett were still awake and I would just catch up. After a few minutes of watching the movie after my slumber, I realized I was not the only one napping.
I may or may not have told my family I was able to stay awake longer than each of them. They weren’t buying it. They knew better. We all agreed to call it a night and try again the next night..
I wonder how many parents use the phone as a consequence to curb teen behavior.
I’m guessing a huge majority of parents threaten phones and technology when it comes to curbing behavior or affecting a change in their kids, whether its toddlers or teens.
In my house I know we have changed our mindset about phones and iPads of late. We were listening to a podcast on a recent road trip from someone who seemed well versed on parenting. The individual – a noted child psychologist – said parents must treat technology as a currency their kids must earn rather than letting it be a given at any time. It becomes expected and it must be earned.
Our go-to threat has been the phone when we reach our limits of frustration or need to make an impact beyond words. We know our 13-year-old cares tremendously about his phone and communicating with his friends, so when his grades took a dip recently because he didn’t seem to be caring enough we limited his phone time to one hour after school until we started seeing his priorities aligned with our expectations. The idea being he can earn more time when things improve.
One day this week I was reading an article and it waxed deeply and warned parents removing a kid’s phone today is akin to alienating him from his friends and spiking feelings of isolation.
It just goes to show there is a danger in reading too much because it can lead to great confusion. In the end, it’s about trusting the gut and doing what you think is best each day. I have learned new challenges arise daily and the decisions of yesterday are not always the same as tomorrow. Parents must just do the best we can for ourselves and the little people – even if they are taller than the lady of the house — we love more than anything.