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When Parents CAN’T Get Help

There is a scene in the Disney movie, “Beauty and the Beast,” where Belle’s father is desperately trying to save her. She’s being held prisoner by the Beast, so her father begs people in town to help rescue her.

At first, the townspeople lead him on, letting him think they will help. But, in truth, they don’t believe him.  They call him a “crazy lunatic” and literally throw him out into the bitter cold.  He lands on his face, scooping snow with his mouth, and wails in hopeless desperation, “Will no one help me?”

That scene describes my life for 18 months. My son was being held “prisoner” by ADHD.  The problem was that people either did not believe the severity of the struggles I was describing, or thought they were a result of poor parenting.

We were both prisoners to overwhelming ignorance over ADHD.

Mark had classic – and highly frustrating – symptoms of ADHD. He was very hyper and always on the move.  His was very distracted, rarely engaged in anything in school, and couldn’t process verbal instructions if his life depended on it.  All of these symptoms made parenting crazy-frustrating and maddening…beyond words!  But the worst part, by far, were the mood swings.

Mark developed manic and debilitating mood swings, beginning consistently in kindergarten.  There was no telling when they would hit.  Any little thing could trigger a two-hour melt-down.

These meltdowns wreaked havoc for our family! It was impossible to get to school – or anywhere – on time.  Many evenings – and vacations – were destroyed by Mark’s outbursts.

And, forget homework! His reading teachers thought I was a horrible, lazy parent when I sent several assignments back with a note attached.  “Mark had a massive melt-down last night.  I couldn’t get him to do his homework.  I’m still trying to get medical help, but I’m on a three-month waiting list…”

The situation was made worse by the fact that Mark was a calm, quiet child in school. The “Mark” that his teachers and principal saw was very different than the Mark that could explode at home.  I can’t blame any of them for being perplexed over my descriptions of his behavior.   To them, he seemed like an angel.

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Mark doting on his new baby cousin! He’s a loving soul, but ADHD was holding him hostage, causing debilitating melt-downs…even when visiting his favorite people!

First, his behavior was *not* a ploy to get attention and manipulate us. That did not fit his personality and many of his melt-downs occurred during fun things he wanted to do.  Why would he sabotage his own fun time on purpose?

Secondly, we believed he was experiencing some sort of chemical reaction within his body. The moods were incredibly manic, as if he was possessed.  His eyes would go blank and he lost all capacity to be rational.  It’s hard to explain to others, but we knew our son had no capacity to control himself.

One day we took a 1.5-hour road trip to visit Mark’s favorite people: Uncle Greg, Aunt Mandy, and “baby Katie.”  Katie was a brand-new newborn at the time and Mark was over-the-moon to be her big cousin!

But, those 90 minutes were the longest of my life! Mark was a crying, inconsolable, and moody mess. He wailed many times, “I wish I was never even born!” which is a horrible – and scary – thing to hear from your child.  For a brief, 5-minute window, however, he did manage to laugh very heartily over a crane on the side of the road. It was very manic and very concerning!

When we finally reached the restaurant to meet my family, I sat next to my brother Greg, put my head on the table, and cried! I had been trying to get help for Mark for months.  I was sent from doctor to doctor, waiting list to waiting list.  Meanwhile, our concerns were either dismissed, or were thought to be caused by a “crazy, lunatic” mother.

Soon after that road trip, right in the midst of my desperate scramble to get medical help, I was also thrown out in the cold, just like Belle’s father.  I’ve written about this the infamous meeting with Mark’s principal a few times. Click here to read the detailed story.

In short, the principal was concerned that Mark’s reading scores had not improved in six months and that Mark had missed a lot of school. He knew about our medical concerns and all of our appointments; I had CCed him on every email to teachers throughout the year.  But, he hadn’t seen any sign of Mark’s distress at school.

Since the outbursts were only happening at home, he told me, it was a parenting problem. He reached across the table, wagged his finger in my face, and scolded me. “YOU are holding your son back.  His MOTHER is holding him back!”  He then concluded the meeting by threatening to take us to court for “educational neglect,” which is child abuse in the court system.

He challenged my integrity as a professional and as a parent. It was a bully move, abusing his position of authority.  In my head, I knew that he was the problem, not me.  But, it was still a very painful accusation.  By the time I left his office, I was crying so hard, I was hyperventilating.

It wasn’t just the principal’s obnoxious behavior that pushed me over the edge. It was that I felt duped.  I thought he was our “educational partner” and was expecting the meeting to be much more pro-active and team-oriented.

It was also the fact that I had been killing myself to get help for Mark; worrying myself sick, straining over all sorts of “rule-out “diets, and sacrificing sleep to work late at night, since my daytime hours were filled with his doctor appointments, medical tests, and child care during his frequent “sick days.”

And, I was also upset over the fact that I was running out of options.

Mark had already been diagnosed with ADHD, but the delay was over how to treat him.  His blood sugar levels indicated that we should consult with a pediatric endocrinologist, another three-month wait.  The endocrinologist said we had better check in with a pediatric cardiologist, another two-month wait. When every day is hell, waiting 90 days, then being told you have to wait another 60 days, then another 90 days… is very difficult and disheartening.

We soon learned not to tell any doctors or educators about the mood swings. As soon as we did, the attention would turn towards us and the quality of our parenting.

My husband and I aren’t perfect parents, by any means, but we are as prepared as any parents can possibly be! We have both been trained in “Love and Logic” and each have years of experience honing our behavior-management skills in the classroom. Nonetheless, I’m here to tell you…logic does not prevail in a child with special needs!

Starting Treatment

So, instead of talking about the mood swings, we only discussed the more “appropriate” symptoms of ADHD.  When we finally got the green light to begin treatment, we had already spent months trying various diets, ruling out food allergies and all of the other things that some people believe cause ADHD.  We had tried everything and now, we were hoping medication would help.

Medication did help!  But, it took several months of testing before we found the right medication and dosage. We agreed that medication would not be tolerated if it turned Mark into a drone; we would only support medication if it allowed Mark to be more, “Mark.”  When we finally found the right treatment, angels hovered over our house and sang a glorious chorus!

We noticed stark improvements overnight.  But, within only a few weeks the mood swings were reduced by 80%. We also worked with a counselor and within a couple of months, the mood swings were gone altogether. We had our Mark back!

Mark still had struggles with dyslexia, but he was excelling in his new school! (We pulled him from the previous school, immediately following the threat of child abuse charges.) He was now more cooperative over making healthy food choices and happy to get involved in sports and other healthy, physical activities.

I’ve since learned that his mood swings were caused by serious anxiety. The anxiety was fueled by two factors.  First, he was on sensory overload in his previous school; too many bodies, too much noise, and too much commotion for him to effectively cope.  Second, I eventually discovered he had been treated poorly by two teachers and the principal.  Just days before the infamous meeting, I witnessed an incident while volunteering for Mark’s class.

Anxiety, it turns out, is a “kissing cousin” of ADHD; the biology of ADHD and anxiety are nearly identical. I never realized how debilitating anxiety can be, but it explains why Mark was not having outbursts at school; he was riddled with fear!  At home, where he was more comfortable, fear did not suppress his anxiety. Without fear to “cork” it, the cycle of anxiety spun through his brain like thread in a sewing machine on full throttle!

It has now been 14 months since Mark’s treatment took hold and I’m happy to report that he’s a happy eight year-old, thriving in school, and thrilled that we are able to help other children benefit from the challenges he experienced.

I could not be more happy for him, but one question has haunted me since we encountered our first road-block, two-and-a-half years ago….

If This Is Happening to Us, What Do Other Parents Do?

We had every resource at our disposal. I am a professional educator on a national platform.  My husband is a nationally board-certified teacher and was a highly respected teacher in the same school district as my son.  In fact, he won a teaching award from our county two nights after the principal’s attack.

My mother is a physician who consistently supported our concerns, encouraged me to keep fighting, and assured me that I wasn’t crazy.  With my husband’s health benefits, we had unlimited access to healthcare.  In theory, we had everything we needed to push forward.  Yet, we were met with unimaginable roadblocks on the path towards healing.

Over and over again, I would say to my husband, “I am using every ounce of my professional energy to help Mark. Every step of the way, I’ve had a ‘plan B.’ If something doesn’t work, I’m on to the next thing.  I don’t know when we’ll find an answer, but I know how to keep fighting.  What do parents do who don’t have our training or our resources?”  I still shudder to think about it.

Throughout the whole ordeal, I had this great sense that I was supposed to be learning from it. It was like I had two personalities; one was the worried, anxious, sleep-less mom.  The other was the quiet observer, soaking up every morsel of information and every emotion, knowing that God was testing me for a reason.

It is hard to describe how both personalities could co-exist in my heart; that I could experience such intense pain (picture Belle’s father, lying face down, in the cold snow), yet have such a strong conviction that it was all happening for a good reason.

I’ve already seen our trials come to a positive fruition in at least a dozen close friends and family who have directly benefited from lessons we learned. Just this morning, a friend sent a Facebook message, asking for information to help her ADHD son.   It’s becoming a daily occurrence, just within my personal network.

Last week, ADDitude Magazine invited me to sit on their Expert Panel and host a webchat about school-related ADHD issues. Over 200 questions came in so fast and furious, that I couldn’t possibly read them all during the one-hour webinar.  I finally read through all of them this weekend, while riding in the car with my family.

After reading only a few dozen questions, I put my head back in angst for these parents and vented to my husband, “These questions are just heart-breaking; there is so much pain here! So many people don’t understand ADHD and are fighting the stigma, children are accused of being lazy, parents aren’t able to get help and think they are crazy…this is just awful!”

Suddenly, Mark piped in from the backseat, “Yeah, but Mom, you did such a good job of getting me through all of this terrible stuff; you can help them, too!”

Wow! There is nothing like an endorsement from your child, especially after walking through the storms we’ve shared together. He knows this has been my goal, all along.  But, I sure do love how he tries to cheer his mama up!

Moving Forward

Tomorrow, I’m flying off to San Francisco for the largest ADHD conference of the year, hosted by CHADD. I’m bringing along information on the ADHD Circuit®, a model I developed to help people better understand ADHD. I’m hoping I can find a way to get it into people’s hands.

Dozens of people have already told me that this model has “changed their life” and “finally” helped them understand ADHD. It is 100% scientifically accurate.  The question is, will people who’ve dedicated decades of their life to researching and understanding ADHD be willing to embrace this viewpoint?

I’m about to find out! I’m not speaking, since the call for speakers closed months ago, long before I had gathered enough research or tested my model thoroughly.  I am not buying a booth since I am not planning to sell anything.  So, I will quietly talk to people and see what happens.   Wish me luck…for the sake of all the children and adults who are fighting this seriously misunderstood condition.  ADHD can be a great asset, once people understand it and learn how to harness it.

Of course, I’m also going to learn as much as I possibly can, and hope to pass good information along to you. In the meantime, you can see an introduction to the ADHD Circuit® model in a video on this page:

Until next week…

-Susan Kruger

 


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