Apr 27

Guest post: What do you “( )” about? What do you “–” about?

 

In November, my five year old son was diagnosed with a severe mixed receptive-expressive language disorder.  I have since come to recognize just how difficult it is to write or speak effectively about this condition.  I want to be rigorous in describing the genetic causes, the symptoms, and the prognosis of this disorder and unsentimental in capturing the significant outlays in time, money, and energy that treating our son has required. But as I attempt to explain this condition to friends and family members who are almost uniformly unfamiliar with this disorder, I am acutely aware of my communication failures: my lack of fluidity, my tendency to start and stop, to retract and begin again.  I am inserting parentheses and dashes into every sentence I utter or write.    Continue reading

May 27

Mysterio

For my son, Harry, on his 23rd Birthday

“Learning disabled,” he said, “but bright.”
ADD, auditory tests, meds, therapy,
The doc’s toy animals smile from the shelves,
All the mystery of my son made simple, tied up tight

I chafe at labels, fear for stigma you’ll face,
But none of that noise touches you,
At your own speed, you grasp what sparks to you,
Indifferent to the ranting rivalry of the race

Now you’re off on your own,
On your first birthday away from home,
You’ve slipped free from my worrying arms,
And you’re working, laughing, grown

But back at Big Bear Lake you were nine
In the rented boat, poles out, lines in, quiet as monks
We drank cokes and waited for fish,
As our bobbers winked in the lake’s midday shine

At the lodge, laughing, we fell into a TV magic show,
Sharing Oreos as Mysterio’s cape made big things disappear,
That cape covered us too, and snapped us away into today
But my son, my mystery, you remember, I know.

Apr 29

What ADHD Has Taught Me: The Good, the Bad, and the Ugly

 

 
Hurricane

Hurricane Kid

In previous posts, I’ve characterized Mason as my little hurricane. Recent blog themes on acceptance made me realize that, sometimes, hurricanes are needed.  In my case, I needed a hurricane to clear many layers of emotional debris that kept me from being available to truly love others, warts and all.

 Here’s some of what I have learned thus far.

 

The Good

Listen more, talk less.

Give one direction at a time then, wait.

Engage in conversations; ignore arguments.

I know my child better than anyone else does. Don’t ignore your instincts; instead, keep asking questions of doctors, teachers, therapists, other parents — anyone who may have insight into your child’s world.

“Boys will be boys” is not an explanation for ADHD, oppositional behavior, sensory integration disorder or any other a-typical category. 

Control less: no amount of organizational equipment (boxes, tubs, etc.) can contain his belongings or his apparent need to scatter them all over his bedroom.

Erratic chores? Leave the room while he clears one dish at a time. At least he’s doing it!

Delegate: let dad help pack allergy-free food for outings and long road trips; let Mason be responsible for carrying his EpiPen everywhere he goes.

Let go: allow Mason to go to a party without a parent supervising his food and behavior. (Well, … maybe sometimes.)

Expect chaos, impulsive behavior.

Accept my limitations: physical and emotional.

Lots of homework doesn’t necessarily mean lots of learning.

More compassion for those who don’t “fit the mold.”

Casual readers can be good people. Raising a good person would be a great thing.

The Bad

I talk too fast, use “too many words.”

For some, organizational skills are inherent; for others, some, not all, can be taught.

Give educators and doctors lots of paper so they’ll take you seriously and provide services.

ADHD gets you services; other learning disabilities such as Central Auditory Processing (CAPD) do not. Document those that will get your child the help they need. Then, ask for help with the unrecognized disabilities.

“Proficient” is a sanitized way to describe a below average student.

 Behavior modification systems are really tools to distract already storm-swept parents, and are usually “make work” programs for mom.

The Ugly

My faith is not as strong as I thought. Can I trust that He will take care of both of my children? Especially the one who may not be able to care for himself?

I’m angry, depressed, selfish, controlling and critical. These qualities do not help any of us.

Final Lessons

Well, luckily the good outweighs the bad and the ugly. Parenting this Easy to Love, but Hard to Raise child is like chasing a pendulum in constant motion. A good day is when you hit the moving target — guessing the right strategy for the moment. Miss, and it can be a downward spiral that leaves you bewildered, wondering where in the universe did that (response, behavior, problem) come from?

It’s a process, as they say. I can finally see, love, and accept the person behind all of the diagnoses: a sweet, sensitive, interesting little boy with a slightly off-center view of the world. Thank you, Hurricane.

Mar 29

ADHD and Gifted Under One Roof

Two Little Hurricanes

My first post described how our little hurricane, Mason, came into our lives and introduced us to a whole slew of acronyms that we never dreamed we would need to understand.  Well, his older sister E, our birth child, is a hurricane in her own right.  She introduced us to another acronym, “Talented and Gifted”, or TAG.  Their acronyms make for a challenging home environment, to say the least. 

E’s gifts counter Mason’s disadvantages: language, memory and the ability to learn in general.  I realize all children, especially when they are young, absorb information and their surroundings like a sponge, but E’s abilities have a different intensity.  She attacks learning and truly needs intellectual challenge nearly every waking minute.  Her loquacious, inquisitive nature foils Mason’s initial temperament, characterized by incessant crying and fussing, squirming, pushing.  Every attempt to calm or soothe incurred pain rather than comfort.  Whereas E enjoyed interaction, Mason either turned away or pushed his way out of our arms. While E seemingly came out of the womb “talking,” Mason’s early attempts at communication (besides crying) were finger pointing and grunts.  Although I thoroughly enjoyed E’s enthusiasm, I sometimes told her, “Mommy’s ears are turned off right now, they need a break from listening.” I was worried about Mason’s inability to communicate his needs or desires.  Oh sure, part of it was due to the fact he spent most of his time with two first-born girls who were quite happy to restate his intentions, thank you!  After all …, we know what’s best for you.

Well, as you can guess, all of this ping-ponging between a five-year-old “adult” and a non-verbal two-year-old made for one exhausted, bewildered mom. I never imagined how mentally and physically draining it is to spend your days responding to the endless questions and observations of a smart kindergartner and trying to coerce any verbal response from a speech-delayed two-year-old.  By the end of the day, I could barely put two words together to greet my spouse, let alone carry on a conversation. 

Looking back on it, I can see that it’s gotten better.  How?  Lots of therapy, speech therapy in particular, but the occupational therapy improved Mason’s ability to tolerate speech therapy’s challenges.  Once we found the right person, behavioral therapy helped Mason, but it also helped me.  I have learned how ADHD feels to him.  Another realization is that it’s worth it — every bone-tired day, the seemingly endless appointments at far-flung locations, countless phone calls and voluminous reading.  It’s all worth it.  Now, he tells me, “Too many words, mom.” (Thank you, Central Auditory Processing Disorder diagnosis and training!)

And, as for that other little hurricane?  She’s a whirlwind of help — always ready with a quick way to remember information for a test, or when homework gets too overwhelming, she’s got simpler ways to solve a problem.  They still play together, watch movies and just hang out and enjoy each other’s company.  These moments make it all worth it.  They are, as the popular commercial says, priceless.

Feb 28

A Lion, A Witch and a Hurricane

 

Before I introduce myself and my “lion,” I want to thank Kay Marner and Adrienne Ehlert Bashista and the Easy to Love but Hard to Raise contributors for helping me get here. I, too, feel honored to be here.

I’m Kathy, married 25 years to Phil, who’s helping me raise two exceptional children, ages 14 and 11. This story is about our younger child, Mason, who we adopted at 3 weeks and promptly took on our summer vacation to the Outer Banks in North Carolina. That’s where the hurricane comes in: Hurricane Floyd!  Just as Mason began “waking up,” or becoming more aware of his surroundings, we were evacuated from the beach house we were sharing with two other families. Maybe it was the weather, the quickly shifting surroundings, or typical infant development, but whatever it was, Mason’s personality began emerging as the hurricane gained strength and headed toward the shore.  Little did I know, but our family was entering the eye of another sort of storm.

First, a little background: our daughter, Erica, was nearly 4 years old when we adopted Mason.  She was our miracle birth child, conceived during the “last-ditch effort” fertility treatment.  Many well-meaning parents, grandparents, doctors,  and friends told us we found Mason difficult because his sister was unusually easy to raise.  But, I instinctively knew Mason’s differences weren’t right. He was suffering and we had to find out why.  That’s when the witch side of my personality emerged.  My anger and frustration at trying to care for Mason fueled the energy I needed to find the right people who could help him.  That search, I’m learning, is ongoing.

We’ve gone through the proverbial alphabet of diagnostic acronyms: SID (Sensory Integration Dysfunction), Aspergers, ODD (Oppositional Defiant Disorder), APD (Auditory Processing Disorder), ADHD, inattentive-type, and Dysgraphia.  Although ADHD is his primary diagnosis now, I still see shades of each percolating and bubbling over at various times.

Mason has gone from being a thrashing, inconsolable infant to an angry, frustrated toddler struggling to overcome developmental delays, to a more calm, sensitive, affectionate young boy.  His journey has taken us through some unchartered territory, some good, some not so good.  However, I wouldn’t change it.  Yes, I would do some things differently, but, now, I don’t want to miss the opportunity to raise this exceptional child.  I just hope I can help make the journey easier for someone else, as all of you involved in this project are already doing for me.

Photo credit: Data from NOAA GOES satellite. Images produced by Hal Pierce, Laboratory for Atmospheres, NASA Goddard Space Flight Center

Feb 18

ADHD and Eye-Contact Between My Son and Me

My ADHD/CAP son is moving out on his own and back to Hawaii next month and besides already missing him, I’ve been thinking back on all we’ve learned together about ADHD and all the comorbid conditions that we drag around with it in a little Learning Disabilities red wagon. I wrote this a year ago, when things were tense between the two us and I was looking for a way to break through to him.

“Harry?”

“Yeah?”

“Are you going to do the kitchen or not?”

There’s no answer. At least I think there’s no answer. It’s hard to tell because I’m talking to a closed door.

“Harry!”

My 21 year-old ADHD son is in his room on the other side of the door. We’re trying to break him of this rude habit of communicating to the family through hollow-core plywood. I’ve taken the door off the hinges and carted it out to the garage a couple of times, but then we’re all subject to the sight of his incredibly messy room, and the first time he promises to be a more responsive member of the household, we let him put it back up.

Once I took it down and put it back up before he even came back from school because I couldn’t take even walking by the open entrance of the nuclear waste dump where he sleeps, plays video games, practices guitar, and eats ramen noodles.

My son will tell you he’s not ADHD. He says terms like “ADHD non-hyperactive type” are stupid. He’ll cop to being maybe a little ADD, but he refuses to take his meds, and since he did pretty well this semester at the community college, we’re not fighting him on it.

But Jeeze-Louise, the kid’s twenty-one for god’s sake, and I can’t get him to clean the kitchen when I ask him to, or even open the door to his room when he’s talking, or in this case, not talking to me. We’ve always been a engaged full-service parenting operation, equipped with the standard arsenal of love, respect, rules, manners, discipline, expectations, rewards, consequences, and blah-blah-blah. We get tired and space some stuff out sometimes, but most of the time we’re there pushing for the best for our kids, I think, I hope.

But these days it seems that’s all I do with my son – push. I’m tired of always being the cop in this relationship; I’m tired of always being on his ass. Yes, he’s got learning disabilities, but so did I growing up.

Then, just before I go into a “When I was your age…” self-righteous rage, Harry opens his door and says, “Okay, okay… I was just getting my IPod.” Then he walks past me with headphones on and starts cleaning the kitchen – slowly, with one hand. His other hand is occupied with IPod adjustments. I’ve told him a kazillion times that cleaning is a two-handed job. I was a professional dishwasher at his age before moving up to grill cook and you have to grab work with both hands, the same way you have to grab life if you expect to get anything from it… anyway, you get the idea. Harry does too. That’s why he’s got Eminem pounding in his ears.

My son Harry’s ADHD and my ADHD are very different in a lot of ways – I’m an on-edge, jumpy, combined type with comorbid emotional and psychological doo-dads lurking in my head like unexploded bombs that go off with the smallest nudge, who has learned to use meds, power tools, or whatever it takes to bolt down my concentration to what’s in front of me.

But Harry’s ADHD, combined with his co-morbid auditory processing delay (which he also doesn’t like to admit to) has him buried down in a cavern, looking at the stuff that he’s gathered around him and not all that interested in venturing out into the sunlight to experience anything new.

For awhile it seemed like no matter what either Harry or I did, we were going to be stuck forever in this boring dance of hyperactive discipline and passive-aggressive rebellion. Then I noticed that when we talked to each other we barely looked each other in the eyes. We’d start with eye contact, and then we’d both slide off as our attention was drawn to other things while we were talking. It’s a small ADHD habit we share.

So, I’m trying something new. I keep my eyes on his when we talk – through the whole conversation. And, yes, I also try to talk about other stuff than what chores he should be doing.

But the eye thing really seems to make a difference. He looks back – eye contact. Yesterday we even shared a smile.

Originally published in additudemag.com 2010