Our story: The Diagnosis and treatment of Attention Deficit Hyperactivity Disorder
I’ve talked to several people recently about ADHD and our recent experience and the more I try to encapsulate our experience into a few sentences or into a short conversation, the more I realized that sharing our experience is more important than my quiet and relieved acceptance of the situation. So here’s our story and hopefully you know someone who might benefit from something we learned along the way.
The Diagnosis of Attention Deficit Hyperactivity Disorder
I had already been homeschooling and she was our first born, so when I took her for testing and the psychologist started hinting at adding testing specifically for ADHD, I felt like everything started clicking into place. I realized that it wasn’t my teaching or the curriculum or my methods or anything else that was “causing” the behaviors I saw, it was just my daughter.
The psychologist showed us some of the test results and she was at the extreme end of ADHD, combined type. She was nearly off the charts hyperactive (crashing into things, always bumping into the wall, her siblings, me, breaking toys accidentally, etc. and sitting still was not a phrase in her vocabulary) and she could not pay attention to something for longer than a few seconds. She would walk across the room to let the dog in and forget 3 steps into her walk and stop to play. She was completely incapable of any type of timed math quiz – she would repeat her math facts at least 10 times before she would stop suddenly and ask “what was the question again?” School was frustrating, play was annoying and life was a high speed adventure all the time. She had no volume control, no impulse control and was either living life at 100miles an hour or asleep.
I had to laugh every time I read or heard someone talking about the stereotypical “boy” behaviors because my daughter fit every one of them!
We followed every recommendation the psychologist and pediatrician gave us. We got a strong thumbs up for homeschooling and a warning that if we ever put her in public school they would have to help us get an IEP created that would allow her to be successful.
Our Experience with Medication for ADHD
Yes, we used medication for our daughter for her ADHD for not quite a year. This is a huge controversial issue but we used it and survived a year of school on it and I do not regret the experience. I learned a lot from the time she was on medication. It’s interesting looking back on the time we used the medication – at the time, she would flip back and forth between telling me that the medication made doing math easier and yet she often complained about having to take it every morning. Now she’ll describe the meds as “those terrible meds I had to take”.
Side effects were a huge issue for us. We spent 6-8 weeks or longer adjusting to the meds – stomach aches, headaches, moodiness, loss of appetite. There were amazing changes though – I remember the first day sitting on the couch next to her, reading a school book together and she sat still. Perfectly still. Hands calmly on her knees, feet calm and still, head still, she was totally still. I had trouble concentrating because I’d never seen her so still before in my entire life!
Without getting into the details of how the journey unfolded, I’ll summarize the effects of the medication as troubling. While she did adjust to them for the most part, she experienced increased anxiety (not high enough to warrant medicating for anxiety but high enough to concern me), mood swings, especially in the afternoons, where she would be gloomy and sad, and she wasn’t gaining weight. We had to give her ensure drinks every day and really focus on eating a lot of healthy snacks with higher calorie and fat content to keep her weight up. She also had to take melatonin to sleep at night, the max amount prescribed by the pediatrician for her age.
Her behavior on the other hand was exactly where the doctors wanted her to be – focused, not hyper, able to participate in any activity that she desired. She was able to learn how to keep a beat, focused on word puzzles and did well in school.
I was encouraged at every Dr. visit – the medication is the best thing for her. Yes there are trade-offs but in the long run this is what her brain needs, you’re doing the right thing!
Alternative treatments are a huge part of the world of ADHD today. My pediatrician made sure I was well aware of the fact that her moms who try them are the ones who are the biggest proponent of medication out there because once they fail, meds are just such a welcome relief! I did try some of them – essential oils (boy I wanted that one to work, how simple it sounded!) diet (that was a trial, and all the more frustrating after it showed no improvement!)
I read about these alternative treatments and how parents spent so much time modifying the environment for their child and I wondered whether there was a way to make life work without meds and ultimately I failed to make any measurable progress.
Then came the moment when I had the time available to try the one last thing – the one thing I was growing more and more certain would work. I had begun to believe that we were dealing with a sensory issue instead of attention deficit disorder and I had access to an occupational therapist who did free screenings and came highly recommended from the person who had worked magic in our lives with speech therapy. (I can’t say enough good things about our speech therapist, and the word magic is not nearly strong enough for the miracles she performed in my children’s speech!)
Trying occupational Therapy
By the time I went to the free screening session with the occupational therapist, I had read everything I could find online about sensory issues and did not feel at all confident in my understanding of what I was getting into but did feel confident that this was the right direction to run. Ms. Sam was an interesting experience for us and while she wasn’t what I was looking for initially, she ended up being the catalyst to the eventual cure of ADHD in our daughter.
I was to a point where I wanted a knight in shining armor to take my daughter and have her do some magical exercises and send her back out calm, patient, and focused. That didn’t happen.
I would have settled for a professional who could work with my daughter and come back out and tell me “Do these things and she will become calm, patient, and focused.” That didn’t happen either. And I was very frustrated as I felt like I was swimming in the deep end, on a moonless night.
So while I felt like I was treading water in the dark, unable to see anything, with the pediatrician’s words echoing in my head “OT is a great thing to try but be warned, I’ve never had a child be able to go off of meds”, I essentially closed my eyes and started figuring things out. I started a detailed journal at the recommendation of the OT. I wrote down everything about what she was like on meds for a week, then we stopped the meds and I wrote down everything I observed. Throughout the whole experience, I would write down anything I observed in her behavior.
I also read every book I could get my hands on – there was a lending library in the OT’s waiting room and I would spend every moment I could reading. The authors all say pretty much the same thing, I figured out, but the benefit of reading every book written on the topic of sensory integration was that by the 5th or 6th book I felt like I understood what they were saying without having to do more than skim the various sections.
I also asked a ton of questions – asked for suggestions on activities to do, reported behaviors and responses to activities, gleaned tidbits of information on how different activities impact the body and brain and tried a million combinations of activities at different times in the day.
At first the OT thought that I was a bit crazy – sure OT can help her, but she likely has ADHD on top of sensory issues and the two are separate and will need to be treated separately. But I was determined that even if OT wouldn’t cure the ADHD, it would make life livable without meds. So I tried everything. I did every suggestion and tried every activity and did everything the OT even hinted at.
We bought a program called How Does Your Engine Run? Leader’s Guide to the Alert Program for Self Regulation, and that was like someone turned on the lights. Everything suddenly made sense, we were starting to see progress with the occupational therapy and at home sensory diet and as I implemented this new program into our lives, we turned the corner and the language began to change. Now instead of the OT telling me that “she’s doing well,” she started to say, “today was the first day I didn’t see the ADHD”. And the next visit it was “you may be right, I’m not convinced it’s ADHD anymore”. Those days I was so giddy as I drove home I felt like I might jump out of my own skin. It was working!
By the end of the program, only 3-4 months after starting, we had exceeded our goals. I even took an online ADHD checklist test to verify what I was seeing and yes, in fact, our daughter did not show the signs of ADHD anymore. The anxiety is gone except for what is reasonable for a 7 year old to be afraid of (she still doesn’t like spiders but she can now tell me calmly that there’s a spider instead of freaking out and shutting down and crying over a spider halfway across the room). No more medication, no more ensure shakes, no more melatonin.
And while we can’t sit down at 9AM and do 3 hours of school without a break, I personally don’t think that’s such a lofty goal to reach for. She is thriving in school, she is able to respond to situations appropriately, she is not any more impulsive than a typical child her age and she is able to focus and pay attention when she needs to. The pediatrician just shakes her head in wonder “what made the difference do you think?” she asked me in amazement and the OT smiles and proclaims how amazing the progress has been.
So that’s our story: How we cured ADHD. Trying to explain what we learned along the way would take too long here, so I’ll make that another article, but I hope that you read this and believe that there is hope for your child. We do a lot of sensory stuff at home to maintain the results we have seen, read more about how we do Sensory Integration!