Time and Money: Why more kids don’t get the help they need

child friendly monster“We are going to need to talk about your schedule,” my boss appeared in my office doorway. I knew this conversation was coming, but I had hoped that magically I could escape it somehow.

“Do you plan to continue to leave the office every day at 3:30?” Yes, I did plan to because the more consistent I kept things at home, the easier my child with ADHD was to manage. No babysitter meant one less variable.

My calendar is full of pediatrician appointments for medication, counseling, and school meetings. Reminders ding when it’s time to refill prescriptions or email the counselor of a new development. When I am not running him to an appointment, I spend my time researching ADHD and how I can help him through school.

I am exhausted.

woman exhaustedEach step I take has unintended consequences, every specialist has a waiting list months long, and honestly, not a whole lot has been significantly impactful.

Often I wonder if we just need to deal with things until he grows up a bit. Once he’s an adult he will be able to design his life in a way that works with his ADHD instead of trying to fight against it every day.

The further I get into helping my child, the more I understand why more children don’t receive the help they need.

Counseling

The official ADHD diagnosis came in first grade when he was seven-years-old. What I thought was anxiety/perfectionism struggles was really multi-symptom ADHD. A few months of counseling had given me an answer to years of searching.

The diagnosis felt like a relief, knowing what we were working with instead of taking stabs in the dark with an endless stack of parenting books. Counseling became a staple every other week. Both Xander and I had to leave school/work early.

Medicationpills

Halfway through the first-grade year things grew worse. The teacher really had a difficult time helping Xander manage his emotions in the classroom. We did too at home, but we had strategies she could not apply in the classroom, like go to your room and cool down. Come back when you’re ready. That doesn’t work in a school setting.

We decided to try medication. Three total, 2 stimulants and 1 non—stimulant. It was horrific. The first medication zombie-fied my son and decreased his appetite. The second try increased his aggressive behavior and the third go around had zero effect.

All this was happening while he was at school. Meaning he was trying to learn while we pumped different medications into him. Ick! I felt like a horrible mother medicating my child to fit into some screwed up version of what society expected.

Getting the medications required:

  • Time off of work to go the pediatrician’s office
  • Pre-approval through our insurance
  • Early morning trips to the pediatrician’s office 30 miles away once a month to pick up the handwritten script for stimulant medications. They are considered controlled substances, no refills allowed.
  • Picking the script up, dropping it off to the pharmacy to be filled, and picking up the medicine all on the same day to ensure he would never run of out his medication.
  • Reminder alerts setup to make sure we never forgot a dose in the morning before school
  • Constant monitoring, is he eating enough, is his behavior improving at home, are academics improving at school?
  • Close communication with the school, getting feedback from the teacher, alerting to new medications, trying to decipher if this one is working.
  • Calling the doctor every two weeks to report the effects of the medication.

Every day seemed to hold one item on the agenda related to his medication. Trying new medicines was wearing on him. When he asked me if he could stop, I said “absolutely”.

I have no intention of every trying again.

meetingSchool

During all of the medication trial and error, the school meetings continued. Each meeting was either first thing in the morning (late to work) or at the end of the school day (had to leave work early).

I couldn’t help but think, he is only one child. Each classroom has roughly 25 students and I know my son is not the only one with ADHD. How do the teachers do it?

The principal offered to put a referral through to have the school counselor to talk to Xander on the days she was there. I agreed and made sure she was always on the same page as the counselor we had been regularly seeing.

One meeting we found ourselves surrounded by his teacher, teacher’s aide, principal, reading interventionist, behavior specialist, and the school counselor. They were concerned about Xander’s emotional regulation.

Suggestions flew through that room: let him take laps around the school, give him a special place in the room to calm down when he’s upset, provide war/military books in the classroom, reward/chart systems, etc. The list of ideas overwhelmed me, but I was grateful they were so willing to think out of the box to help him.

At the end of the year, I think all of that accommodation made things worse instead of better for him. He received a little too much freedom and not enough routine. Trying so many new things was also overwhelming to the teachers.

Scientifically we know we can only develop 12 new habits a year, spaced one month apart. To try all of those things or even just a few at a time was destined to fail.

So we decided to simplify things heading into second grade. When I approached the school with a new streamlined plan heavily focusing on stern discipline and routine I think they were relieved.

Dyslexia?boy reading

No matter how much effort we put into reading it didn’t seem to make much impact. He was improving, but a significantly slower rate than his peers. I began to wonder if he had a learning disability. Our counselor suggested contacting Children’s Hospital as they had been able to help another client of hers.

If this could help identify ways to help my child thrive academically, I would walk through fire. Turns out, I just needed to be patient.

Learning Disorder testing through Children’s Hospital

Step 1 Call intake department-yes the have a whole department for this, yikes!

Step 2 Get a referral from the pediatrician

Step 3 Wait. At the time we were put on the list it was 7-9 months long-wow!

Step 4 Parent only intake appointment 8 months later

Step 5 Testing-finally!!!

Alternative treatments

Simultaneously to doing all of the above I tried adjusting Xander’s diet, essential oils, magnesium spray, and giving him coffee.

Diet

All over the internet, I read how diet could exasperate ADHD symptoms. Articles listed ice cream, yogurt, sugar, coffee, swordfish, cheese, chocolate, soda, frozen pizza, corn, chips, squash, fruit juice, and fast food. Now some of these make sense, like foods with colorings, additives, and anything processed.

But cheese? Corn? Coffee?

Heck, coffee helped calm Xander down from time to time. Coffee is a stimulant and stimulants have the reverse effect on people with ADHD. Who was conducting these studies and who the heck was making sense of the results? Maybe there weren’t any studies at all and random people were posting things online.

Russell Barkley, Ph.D., a respected and ADHD psychologist, states on his website, “Treatments with little or no evidence for their effectiveness include dietary management, such as removal of sugar from the diet, high doses of vitamins, minerals, trace elements, or other popular health food remedies, long-term psychotherapy or psychoanalysis, biofeedback, play therapy, chiropractic treatment, or sensory-integration training, despite the widespread popularity of some of these treatment approaches.”

Huh, I’ll take the Ph.D.’s word for it. You know, the fella that has been treating ADHD children for 40+ years in his own practice.

In a home where you are already saddled with endless appointments, tantrums, and just trying to get the reading homework done, fighting over food seemed ridiculous.

Essential Oils

Replacing artificial scents with essential oils has resolved breathing issues Xander had for years, but as far as his ADHD goes…I never really saw any significant change. We used vetiver and lavender.

I suppose it’s only fair to say we were using the oils in conjunction with all kinds of other strategies at the time. We may give essential oils another try with this new simplified strategy; after all I did invest $15-$35 for each bottle.

Magnesium spray

A Shawn Stevenson podcast shared that magnesium deficiency can lead to anxiety and mood swings.

“Studies have shown that only about 25% of U.S. adults are at or above the recommended daily amount of 310 to 320 milligrams for women and 400 to 420 for men,” says Dr. Danine Fruge, Associate Medical Director at the Pritikin Longevity Center in Miami, Florida.

Meaning 75% of us are magnesium deficient.

The US Department of Health and Human Resources states, “Magnesium is a nutrient that the body needs to stay healthy. Magnesium is important for many processes in the body, including regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA.”

After investigating, if magnesium was safe for children, I decided to experiment on myself. Once I found it did not harm me, I let Xander give it a try. It took nearly a whole bottle before I could see the effects, but it was helping both of us to manage our emotions. It has been by no stretch of the imagination a silver bullet, but I think it helps. A $40 bottle typically lasts the two of us a month.

 

The bottom line

Look at all the time, energy and money invested in just one problem. He is one of four in our family. Doesn’t really leave many resources for the rest of us, does it?

My job is pretty flexible, but most aren’t. We sacrifice luxuries and stick to necessities, but not all families are that fortunate. Some can barely get food on the table.

ADHD is a hurdle for everyone involved: the child, the parents, siblings, teachers, classmates, childcare providers.

The natural reaction when a child does not obey is discipline. But Dr. Ross Greene reminds us in Lost at School, “Whether of the natural or adult-imposed variety, consequences do not teach lagging cognitive skills or help kids solve problems.”woman overwhelmed

The only real solution to helping children or adults with ADHD is educating ourselves. Dr. Barkley says, “The treatment of ADHD requires a comprehensive behavioral, psychological, educational, and sometimes medical evaluation followed by education of the individual or their family members as to the nature of the disorder and the methods proven to assist with its management. Treatment is likely to be multidisciplinary, requiring the assistance of the mental health, educational, and medical professions at various points in its course. Treatment must be provided over long time periods to assist those with ADHD in the ongoing management of their disorder. In so doing, many with the disorder can lead satisfactory, reasonably adjusted, and productive lives.”

Multi-prong as in working multiple strategies at once. Continuous appointments (missed school and work), consistent rewards/punishment, and constant communication with all professionals involved.

Does that sound like something most people would sign up for? Would you?


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