There it is in print. I said it. As much as I hate the words "deficit disorder" attached to any description of a child...that's what it's called.
If you had asked me a decade ago about ADHD I would have spouted some sort of ignorance about the fact that it is a made up disorder and an excuse for poor parenting. That was before I was forced to deal with it face to sweet little face.
Although we hear about ADHD all the time...the subject is still taboo and there is still widespread misunderstanding about it. In an effort to connect with other mums struggling, working, and loving in the trenches of atypicality I'm coming out of the "my kids are perfect" closet a little further. In order to dispel some of the misconceptions of what it actually is I will give you a peek into our family life.
I have hesitated to share much in the past but there is freedom in truth and there is support in community. It is not something that should ever hold shame or embarrassment. It is what it is.
ADHD is a poly- genetic (involving various hereditary genes all mixed together) condition that affects the frontal lobes of the brain. It effects the way neurotransmitters dopamine and norepinephrine are used (or not transmitted properly) by the brain. These frontal lobes are the command center. The frontal lobes (the executive function) are like the conductor of an orchestra. It is what organizes, processes and moderates information, stimuli and behaviors into something that makes sense. It has nothing to do with intelligence. The orcherstra may be full of talented, skilled musicians but if the conductor is listening to Toby Mac on his i-pod while the orchestra has sheets of Mozart ready to be played...there is going to be some confusion and chaos. The skill of the musicians are hidden behind a short circuiting conductor.
The genes that combine together to create ADHD can also combine with other genes to create conditions like
Dyslexia, OCD, Aspergers syndrome, Bipolar disorder, Sensory processing disorder (example of SPD: compulsive chewing, sensory seeking or avoidant behaviors) , and other mood and conduct disorders. These genes run in families, sometimes undiagnosed. Since it is a mix of different genes that cause ADHD , people can also be carriers of the genes without having the same exact symptoms. Girls can also react to and compensate for the ADHD genes in a very different way creating more of a "spacey, daydreamer" form of ADD or very few symptoms at all. Children with ADHD are also at a much higher risk for the other disorders listed above. This combining is known as "co-morbid" conditions meaning basically that it isn't unusual to have more than one of these issues...or some of the traits of some of the disorders without it being severe enough to seek a diagnosis.
In some cases it is not genetics that cause ADHD but actual brain damage (drugs, injury, illness).
I do think that it is likely overdiagnosed. There are MANY children who are ramped up on junkfood, not enough sleep, neglect or lack of parenting discipline that causes similar symptoms. Those should be ruled out by thorough assessments by professionals. ADHD is very different than a spoiled out of control child....although at quick glance they may appear similar.
Roman told me the other day "
Mom I wish God gave my brain to a different boy".
The strangeness of this statement cause me to probe a little further into his thought process (at that point we had been struggling all morning to do very basic school work).
He continued "
Well, not my BRAIN, because I would be dead without it...but my smartness. I'm just not making very good use of it."
It turns out that he couldn't have been more accurate. He is VERY aware of his struggles and is often frustrated by them. What I wasn't aware of was just how much "smartness" is hiding behind his ADHD issues.
We got the results of extensive assessment tests back last week. It was very insightful to get a peak into the workings of how his brain works. He has always been a boy of extremes and his IQ broken down into categories proves just that....extremes. In areas like "applied mathematic problem solving" and "perceptual reasoning" he scored 99th percentile "Superior" intellegence. (I was shocked). In areas like "coding", "sequencing" and "working memory" (things he needs for reading and symbol recognition) he scored "far below average" down in the single digits for percentile (not a surprise but somewhat discouraging). He is VERY right brained...visual spatial. So much so it's a wonder that he doesn't lean to one side! Picture the inventor who can create brilliance but can't remember where he put his glasses.
So much difficult to access potential in this boy!
Since the later stages of infancy it became apparent that Roman differed from his peers in many ways. He NEVER played with a single toy. He didn't notice them. He would crawl, scoot, roll into all sorts of strange locations. This turned to climbing. I remember the day when he at about 9-10 months old flipped over a laundry basket, pushed it up to a baby gate and climbed over (looking back I recognize the problem solving skills in that). From then on there was no containing the child. His toddler years were EXHAUSTING. He was in his own world of overdrive all the time. There was no sitting and playing, coloring, watching tv or any other typical preschool activities. He explored, climbed, jumped off of things, and threw dramatic tantrums should his adventures be physically barred, changed, redirected, or other wise "assaulted".
Strong willed is not strong enough a word for this boy as a toddler. Sheer undeterred, unstoppable drive. I read parenting book after parenting book convinced I was failing as a mother. All the normal methods of punishment and discipline just DID NOT WORK. They only proved to spur him on in his determination.
I received advice like "My son climbed out of his bed once but I spanked him and he never did it again." hmmm...how strange. I couldn't imagine what that would be like.
I remember at one point standing in awe as my toddler climbed out of his bed for the 40th time in an hour (receiving "I'm going to win this battle..darn it all!" penalty each time). I thought to myself that this is kind of unwavering determination, and fearlessness is the stuff that martyrs and heroes are made of.
We lost him ALL the time. He was nicknamed Roaming Roman.
Fearless, adventurous, no concept of time or fear of losing sight of his parents.
At that point in my parenting experience I was convinced I was an absolute failure. I had a pre-school daughter (who now I realize most likely has ADD inattentive type, as well as SPD) who was also exhibiting classic "executive function" problems.
I spent many days crying in defeat, as my marriage hit the rocks and my dream of being a "good mom" dissolved into tantrums and tears.
His impulsivity, compulsion to touch everything and everyone, his lack of ability (not willingness but ability) to follow directions or perform simple tasks....had me baffled.
It wasn't until the word "ADHD" was mentioned to me by his Sunday School teacher that I EVER considered it. I then started reading. I ordered a book from Focus on the Family about ADHD and cried my way through it. For the first time a "parenting book" was describing MY child. It was like they had written the book about him, our struggles, and all his quirky ways. It helped me understand the challenges and benefits of having a mind that is wired like his is. At that point we had received no diagnosis but he 100% met every point on the checklist of symptoms. I knew that label or no label we needed to reevaluate our parenting methods and deal with the behaviors he was exhibiting.
I needed to understand what made this boy tick and how to not only keep him from killing himself but how to thrive in a world that is full of people that are marching to a completely different beat than he is.
We have always said there can be 80 kids in a room all doing the same thing and our son is the only one off in his own little world doing something drastically different.
On the flip side this boy of mine constantly amused and amazed me with his ridiculously wild imagination, his grand ideas, his creative problem solving and his huge sensitive heart.
A typical experience with him at age 4 to 6 would be
Me:
"Roman please go get your pajamas on...Roman...Roman...Roman...look at me...please put your pajamas on"
Roman:
"ok mom" Roman happily gallops, crawls and hops to his room.
On his way to his room he would most likely get distracted by imaginary dragons that needed to be slain or space aliens that needed to hidden from.
Eventually he would come wandering out of his room (if he ever made it there) completely unaware that he was still in his clothes with one sock removed, and his shirt taken off and put back on inside out...no pajamas in sight.
Me:
"Roman why aren't your pajamas on? I told you to put them on"
Roman: "
What? pajamas? oh. Roman break dances to his room to try again....coming back with his shirt off.
Still no pajamas.
Above conversation is repeated this time with a firmer voice...bordering on shrill.
Roman skips to the bathroom, drones a monotone song, digs around for his toothbrush, tests out the nail clippers, then wanders back to the living room and asks
"What was I supposed to do?"
By then mommy is taking deep breaths and twitching and Daddy has lost it completely.
Repeat above conversation multiple times a day over multiple different scenarios until my patience is completely spent. Times the tension and frustration by 100 and you can imagine what doing school work is like for both of us!
This is where knowledge and understanding comes into play. Those things are a lifeline to a parent. Once I realized that this was an area that he legitimately struggled (and wasn't intentionally trying to drive me insane) I knew I needed to take him by the shoulders and help him step by step through the process.
As he has gotten older those executive brain functions of attention, focus, ability to cope with frustration, inhibition, self control, compliance, mood regulation, and social cue reading have improved somewhat with intentional parenting and with maturity (although some issues have become more complex and severe). They will continue to improve as he matures, and learns to compensate.
He is now able and very willing to follow instructions, do his chores, get dressed (on his own!!), and even sit through a church service (that alone took years, and many, many, many Sundays of sitting on "timeouts" in the front entry way of the church!). It also took re-assessing our own expectations and throwing our own "make me look good" parenting pride out the window. Behaviors that come naturally with age and maturity to a typical child do not always come naturally to a child with ADHD, not in the same time frame anyhow. They must be painstakingly, patiently and persistently taught. Even then inconsistency is the trade mark of ADHD. As an ADHD mom it's like constantly adjusting the sails to an ever changing wind. The winds change drastically hour to hour , day to day.
I know many people reading this assume that having a child diagnosed as ADHD is an excuse for poor behavior, lazy parenting, or throwing up our hands in defeat as parents. It is the opposite. Knowledge and understanding is power. To effectively parent ANY child you must understand and truly know them. When you parent a child that is hard wired in an unusual way this is even more critical. Denial and ignorance is disastrous (which is true for every situation in life!!)
Knowing your child has diabetes means you have to alter aspects of your lifestyle, increase your vigilance, and learn as much as you can to help your child survive and thrive. It means you read, and learn and parent that much more intentionally.
We have had to work that much harder. Discipline more frequently. Teach and train more carefully.
We have had to re-evaluate how we educate him.
I feel like I'm painting a fairly bleak picture. Our life with him , our homeschooling him and parenting him has been rewarding, frustrating, exciting, difficult, and wonderful all at the same time.
Understanding his inconsistency and unpredictability is still the hardest.
He can be the most genuinely charming, well mannered, articulate, friendly, generous and affectionate boy you'll ever meet.
On the Jekyl and Hyde flip side we are dealing with "clinically significant" depression, anxiety, and hyperactivity.
It is
so important that we deal with and stabilize these issues before adolescence.
This boy has so much potential. I have no doubt that God is going to use his energy, passion, fearlessness, and intelligence for some great kingdom work. There are so many statistical pitfalls along the way that we need to be vigilant about. Kids with ADHD, particularly those that are left untreated, are at a much higher risk for all kinds of addictive behaviors and risk taking activities. Combine that with his sensory seeking issues and we've got a lot of challenges to navigate which is why our parenting, and work now is so important. As he grows up there is a good chance that he will "outgrow" many of the "deficits" associated with ADHD.
He will always be a guy with a sparkle in his eye , passion in his heart, and big ideas in his head! Thats ok with me. Those are the things I love most about him! I see his captivating personality, his unique mind and even his frustrating quirks as a gift from the one who designed him. With a sparkle in His eye, big plans in His head, and a knowing smile on His face God said "watch what I can do!" .
