Social media can be a wasteland at times, but it has been a tremendous asset to us over the years when it comes to our special needs kid.
The challenges of parenting vary with each child. In our house, our issues are complex with our 11- and 12-year-old adopted boys, but we take great comfort in the tremendous strides they have made over the years. We have been pivoting and adjusting since day one, especially with our special needs son Carson, 11.
The simplest description of Carson’s diagnosis is to say he has Autism, which is true. However, his official genetic diagnosis is 7q.11.23 duplication syndrome, a rare genetic condition causing neurological and behavior problems and delayed speech and motor skills, among others. The traits of his genetic disorder and his clinical diagnoses mirror each other closely. He also has Apraxia of Speech, meaning his brain cannot easily develop speech movement. Over the years, it has become simpler to say he has Autism.
As we wandered through our journey with our special kid, we found great comfort as well as education in researching online, especially social media because we were able to learn individually from others’ experiences and perspectives. It was interesting to meet a world of people willing to share their insights. We special needs parents tend to be open about our lives because we hope transparency will help others charting a similar course to know they are not alone. It’s a bond we all share because we know how difficult and unfair life can be at times.
As life has mellowed out some with Carson’s maturation, we have not needed to rely on the help of others as much as we once did during tumultuous times. There was a period of years when we navigated a roller coaster of behavior outbursts that at time made our family feel unsafe. He was incredibly unpredictable.
Though I prefer to not dwell on negative past experiences, especially when it comes to Carson, it’s beneficial for us to remember and reflect on our progress. He’s a different child today than he was five years ago. The progress in all aspects of his life is remarkable and deserves celebration. Our philosophy has always been to revel in the great times while continuing to push him to new heights. I truly believe now his future is bright. What it will be and whether it includes college and professional life is unknown, but I know his progress over the years proves he is never to be underestimated. He will be a force.
Throughout our journey, social media support groups and organizations have confirmed special needs kids can have a place in this world. They can be productive and successful. We see the examples daily. They are a tremendous source of information and encouragement. One inspirational message I remember seeing posted by a mom with an adult autistic son who was now an admired teacher is below;
Your child’s progress might not be that easy to see on a day-to-day basis, but when you reflect from time to time on how far he or she has come, give yourself some credit: Would that progress have happened if you hadn’t been planning, praying, pushing for it? Everything you do for child – every appointment, every therapy, every intervention, but also every smile, every hug, every conversation – makes a difference. But you’re also making a difference in the world. Every time you give information about your child’s disability to an educator, you make a difference for the next child. Every time you give advice in a support group or online forum you make a difference for that parent and family. You are a force for good.
On this point, for many years, we would begin each schoolyear giving Carson’s teachers a folder with information about his diagnosis. Now we realize giving a teacher 30 pages of information about his duplication disorder was overkill and surely intimidation, but we thought it was best to prepare for the complications ahead. Over the years, it basically became he’s on the Autism spectrum and read his IEP because most teachers have experiences with it. We advise them to expect the unexpected and the importance of routine and keeping him focused.
The fortunate part about this community is we rarely feel we are on an island. We feel incredible support from his school world. We know we are fortunate.
Though we don’t know everything that happens throughout his day, because he cannot articulate for us details because he’s nonverbal, we feel we know as much as we can thanks to the partnership from his teachers and education team. Most importantly we feel he is accepted for who he is.
An example summed up life this week. Every morning we see Carson’s principal, Mr. Cowder, our kid gives him a thumb down. This dates back to sports uniform day in the fall when Mr. Cowder sported a Steelers jersey. We are Ravens fans, so we jokingly gave a thumb down as we drove by his principal. Each morning now as we drive by Mr. Cowder he gives a thumb down. One day this week Mr. Cowder gave Carson a good morning and Carson smiled, responding with a thumb down as we walked by. Later, I told Mr. Cowder, “I hope you don’t take that personal, you know what that’s about.” He said, “No of course not, I love the interaction.”
It’s a simple comment, but it’s the acceptance and awareness we cherish and never take for granted.
