“What Growing Up with a Disability Taught Me About Parenting a Child with ADHD”
“From my perspective, one of the most difficult parts of ADHD is that it’s an invisible disorder. My struggle was easy to see — I walked with a limp (and sometimes with the help of a walker or a cane) — so people were usually patient with me. The same is not true for my son.”
I was born with Cerebral Palsy (CP), a disorder that affects my ability to move and balance. By the time I was 10 years old, I had been through three major leg surgeries to alleviate some of my CP symptoms. I lost three entire summers to rehab and it seemed like I was always at a doctor’s office or with my physical therapist.
Each visit brought questions. The one I dreaded the most was, “Have you been doing your daily exercises at home?” I lied that I had, but the truth is I missed days here and there. I was a kid and I wanted to do what all the other kids my age were doing.
This memory resurfaced recently when my wife and I took our son to his bi-monthly follow-up appointment with his neurologist. Our son sees a neurologist because he was diagnosed with attention deficit hyperactivity disorder (ADHD) about two years ago. During this appointment, I found myself feeling badly for my son and wanting more than ever to change his lot in life or trade places with him.
My son’s doctor is thorough and, like my own doctors years ago, asks lots of questions. She’s gathering information and I get that, but she’s also doing a great job of making him feel different — just like I did when I was his age.
If you have a child with ADHD, you probably experience similar struggles. My wife first spotted the signs of ADHD in our son — the emotions, anxiety, sensory issues, mood swings, lack of focus, and more. I’ve been a youth sports coach for years and couldn’t avoid comparing my son to the other kids on my team. He seemed a little immature, but I figured he’d outgrow it. Looking back now, I think I was in denial and having trouble dealing with my son’s differences.
We all want our kids to have it better than we did. Accepting that, in this aspect of his life he isn’t likely to have it better than me, took some time, but I’ve learned that the first step to tackling a problem is admitting it exists.
Doing What’s Best for Your Child: The D.I.F.F.E.R.E.N.T Approach
As someone who has lived with differences his entire life, I bring a unique perspective to parenting. I’ve developed an acronym — D.I.F.F.E.R.E.N.T. — to make it easy to follow the guiding principles that have worked for our family. Each letter corresponds to some parenting truth I’ve learned by living with my own adversity and helping my son with his.
D is for Deliberate.
Most children with ADHD get overwhelmed by tasks that aren’t broken down into smaller chunks. If I tell my son to “go clean your room,” the enormity of the task paralyzes him. Without specific direction, he’ll spend all day up there and get distracted playing with toys when he’s supposed to be straightening up.
By being deliberate, you can help your child be successful. Break down the main task into a series of small, clearly-defined ones. Give them the structure they need by explaining each task in a deliberate way. As my son progresses, I continue adding on more tasks one at a time (make the bed, pick up your clothes, fold the clothes, etc.) until the job is done. In the end, the room will be cleaned and your child will feel proud. A win-win if you ask me.
Children with ADHD desperately want to do good — I think even more so than do neurotypical children. When we give them tools to succeed, and they are successful, they’ll want to do more.
I is for I have ADHD.
WRONG! We have ADHD. Your child needs a strong support system to thrive. ADHD must be embraced by the entire family, and you must be your child’s greatest advocate. I learned advocacy from my own parents. They fought for me to be in “regular” classes and ride on a “regular” school bus because they knew I’d be able to handle it with the right support — and I did.
From my perspective, one of the most difficult parts of ADHD is that it’s an invisible disorder. My struggle was easy to see — I walked with a limp (and sometimes with the help of a walker or a cane) — and it was easy to see so people were usually patient with me.
Throw your child a life preserver by helping others “see” their struggles. Speak to them in detail and make them understand that your child’s lack of organizational skills and intense emotions are related to his neurological condition.
F is for Feelings.
Never devalue your child’s feelings. What may seem unimportant to you is important to them. When I was in middle school, my parents played on a co-ed company softball team. They got me a uniform and brought me along to a tournament one weekend. I pitched during batting practice and figured I was going to play. As the innings passed, I sat on the bench. It became painfully clear to me that I wasn’t going to be put in the game.
I will remember a man named Fabian — a colleague of my mother’s — until the day I die. Between innings, he asked the team if I could play and they let me! In that moment, Fabian saw me, and I felt instantly better. I don’t think the most important thing here was about playing. It was about needing to be seen and wanting to be heard.
Our children are looking for their place in the circle just like I wanted a place on that team. They want their opinions heard, their stories appreciated, and their jokes enjoyed.
F is also for (in)Flexible.
I have loved and played sports all my life but wasn’t very good at any of them because of my physical limitations. I did have one advantage over most kids my age, though. I had tremendous upper body strength because my arms often did the work my legs couldn’t.
My mom thought I’d have success as a wrestler and encouraged me to go out for the middle school team. To be on the team, I had to pass a physical. Unfortunately, I didn’t pass it and the school physician said my disability put me at too great a risk of injury. I cried that night because I felt like my one chance to compete on a team would never be realized, and it wasn’t my fault.
He must have sensed my determination because a few days later he reconsidered and told us that if the orthopedic specialist would clear me to wrestle, he would permit me to join the team. I missed four practices waiting to see the orthopedist. In 14 years of competing, those four practices were the only ones I ever missed.
My wife and I deal with a lot of inflexible thinking with my son. It’s often a “my way or the highway” attitude. Remembering how that doctor was willing to compromise for me is still a source of inspiration for me. His willingness to take a chance on me changed my life. He was flexible and willing to compromise and respected me enough to hear me out. Children with ADHD need to be heard and they need you to be flexible in your thinking. Look for opportunities for them to be successful. Give them chances to prove they’re capable when you have doubts. They just might prove you wrong.
E is for Emotional.
I wear my heart on my sleeve and live life with visible emotion. My disability has contributed to my sensitive nature, and I’m not sorry about that. I don’t do anything halfway. I’m always all in because I need to show the world that I can do whatever I set my mind to despite my disability. I always want to do well and my son does, too.
What I know about children with ADHD is they have an intense desire to do what is expected and required of them in society — easier said than done given the challenges of ADHD. When my son falls short of a goal or fails to meet expectations, it brings out intense emotions that are difficult to handle and create a lot of frustration for me as a parent. This brings me to the next letter…
R is for Rational.
When we get emotional, we lose our ability to think rationally. The two are interrelated. The enemy of rational thought is emotion.
I’m blessed to be surrounded by a great support system that includes my parents, relatives, friends, neighbors, other coaches, my spouse, and our kids. Their support is humbling because I know that loving someone who is disabled poses challenges that don’t exist in other relationships. All my life, I have been permitted to fall — sometimes literally — and encouraged to get back up. My struggle was never met with negativity. I credit that approach to inspiring me to pursue and achieve lofty goals.
Be this kind of support for your child with ADHD. Instead of getting angry and frustrated when your child doesn’t do what you’ve asked him to do umpteen times, give yourself a time out. Resist yelling at them and give your strong emotions a little time to subside. Children with ADHD crave excitement. If you meet their intense emotion with the same level of intensity, more conflict will result because emotion is more exciting for them.
Children with ADHD think negative attention is better than no attention. In my son’s case, he is also competing for attention with his older brother. When I walk away from those conflicts momentarily, I return better equipped to address my son’s needs.
E is also for Encouragement.
When I was a boy, victory in life was not always easy to obtain. Still, I was always praised for the effort — never the result. This fostered a “no-quit” attitude that I’ve carried into parenting, and it’s been effective.
Children with ADHD thrive from the kind of positive parenting I received as a child. Impulsivity and hyperactivity can be barriers to success for them, but if you stay on the lookout you will find opportunities — large and small — to praise them. Notice when they walk the dog, display good sportsmanship in a game, do something kind for a sibling, etc. and make a huge deal out of it!
N is for kNow your child.
My parents were always my biggest fans. My disability was challenging, but I always felt secure knowing they were there for me. They always seemed to know that I needed help before I did, so I didn’t even have to ask!
Make it your business to know how your child thinks. They may be a bit shy, embarrassed, or too proud to ask for help — I know I was at times. As a parent, that’s the time to step in. Anticipate any issues your child may have outside the home and be ready to go to bat for them. They will be so relieved.
T is for Trust your instincts.
CP research over the years has led to multiple new treatment options and changes in my doctors’ approach to my care — from surgery to physical therapy, to home exercises, to shots to relieve my spasticity.
All the while, my parents did their own research, talked to any expert they could find, consulted different specialists, and tried various approaches when it came to improving my life with CP. I was always included in the process. When treatment suggestions didn’t feel right, we trusted our instincts.
The same is true with ADHD. There are a variety of ways to help your child — from counseling, to diet, to natural supplements, to medication. Where appropriate, include your child in the process of choosing a treatment path. I know from my experience, including our son in the process (when appropriate) makes him feel important and eases his anxiety.
Choose trustworthy treatments and doctors and when something doesn’t feel right, follow that feeling. Medication is a tough and very personal decision. Like other parents of kids with ADHD, my wife and I struggled with this issue for a very long time. We have close relatives and friends whose opinions we value who did not, or do not, agree with our decisions. You must do what you feel is best for your child.
A great coach doesn’t coach every athlete the same way. The coach’s job is to figure out what motivates each player to perform at their best. Parenting is the same way — the same approach doesn’t work for every child. Trial, error, and never giving up on them will pay off.
I am far from a perfect parent, but I know that raising a child with ADHD poses some challenges that other parents don’t face. I work to find what makes sense for my son and that will likely be different for his brother. Embrace D.I.F.F.E.R.E.N.T! Never be satisfied!
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Updated on September 16, 2020