If you've been reading here for long, then you may know that our 4th-born child, Josh, has been diagnosed with ADHD. Because I am acutely aware of the immense burden this disorder can place on not only the child, but also the family, I would like to share his story.
We noticed something wasn't quite right from very early on. It really began with potty-training. Months and months of bed-wetting and "accidents" turned into years. In fact, it went on long beyond the initial diagnosis of ADHD, to the point that we finally ordered an alarm for Josh to wear at night to alert him (and us) that he needed to go to the bathroom.
Of course, there were other signs as well. When Josh was just four years old and in his first year of preschool, I remember the teacher telling me how Josh had wandered out of the school building and out into the parking lot one day. I remember thinking at the time that this must just be what boys were like. More apt to wander, more busy, and less able to focus. And while he was always sweet and well-liked by his teachers and never disruptive in any way, his inability to focus and stay with his group continued to be an issue.
Another subtle clue was the frequent "forgetting of the shoes" whenever we would get in the car to go somewhere. I can't tell you how many times I arrived at a store, only to have Josh tell me that he forgot his shoes! And to this day, I find myself doing a "shoe check" when we get in the car to go somewhere :)
By the time first grade rolled around, we knew something needed to be done to help Josh. Still unsure of the diagnosis, but leaning toward the general idea of ADHD, we spoke to our pediatrician to have Josh evaluated. The results left no doubt.
We hated the idea of "labels" and kept everything very quiet. We didn't go out of our way to announce that Josh was struggling with this disorder, and were very careful to only tell those who had to deal with him directly. I always made an effort at the beginning of each school year to speak with his teachers and let them know up front what they would be dealing with. Some years were good.....caring and understanding teachers that loved Josh for the sweet child he was and were happy to work with him to do his best in school. Other years....not so much. We had several teachers along the way (beginning with 1st grade- the year that we initially pulled him from school to homeschool) that were, quite frankly,
annoyed with Josh, and unable or unwilling to work with him. But, despite several tough years, I kept sending him back to public school. (You can read more about our homeschool decision in
this post.)
Not only did we struggle with having our child attached to a permanent and potentially harmful label, we were also resistant to treating him with any medication. We found our concerns over stimulants to be shared by many as we began to research the pros and cons, and after pouring over scores of different sources of literature, we decided to help our child in (what we deemed at the time to be) the safest way possible.
Counseling.
We were convinced that we would be able to
teach Josh to focus. Task boards were constructed, rewards systems put in place, and we were meeting with a counselor to make it all happen. We were going to save our child while at the same time instituting a lifelong system to help him be successful.
NOT
Grades started dropping, reading skills lacked and we were confronted with the ugly truth....
we needed help.
Another trip to our pediatrician, heads hung low in defeat. We had failed.
We reluctantly accepted the prescription, still nervous about what we were about to do, but desperate to change our child's course. Honestly, I don't even remember what that first drug was....I just know it was
one of those dreaded
stimulants. You know, the ones that make your child grow horns out of his head and turn green.....yeah, that.
But we felt helpless to continue to do it on our own. Drugging him seemed so much easier.
We were quick to realize our initial fears were justified.
Stomach aches, mood swings, stunted growth, nightmares, inability to sleep, loss of appetite.....all due to the drugs.
But the mood swings were the worst. We could always tell when the stimulant was beginning to wear off. Josh would fly into an angry rage every night, usually around the dinner hour, and chaos would reign until he finally fell asleep. It went on for months. It was hell.
And we could only endure so much. Back to the doctor we went. My husband had been doing some new research on the effects of stimulants, and we were convinced they were pure evil in a bottle. During his research, however, we were led to what we believed to be a solution to our predicament.... a non-stimulant option called Concerta. We presented our findings to our doctor, and were given the go-ahead to start this new drug. Unlike stimulants, which only last several hours, Concerta would need to be taken every day and would build up over time with little to no side-effects.
We truly thought we had found our salvation. Josh was able to focus, his grades began to improve and he seemed much happier. The horrible stimulant-drop that we had all learned to expect was gone. His appetite was better and he began to grow taller. Our only issue was ensuring that he took his medication at the same time every day, and keeping him at the right dosage as he began to grow and his body needed more to have the desired effect.
For several years, Concerta was our drug-of-choice. We were comfortable with it. It didn't seem to be doing any damage, and we didn't feel like we were harming our child.
But once again,
we were wrong.
After moving to Georgia, we began to see a new pediatrician. I happened to have Josh in to see him one day for some poison ivy that we were dealing with on Josh's face, and somehow, the conversation turned to Josh's medication. The doctor asked if we were happy with the results of the Concerta. I replied that we were
comfortable with them. He then asked if we felt Josh was being helped to the extent that we would like, and I then admitted that it didn't really seem to be working as it initially had, and that there were lots of struggles with school this year. As he was already taking the highest dose for his size, I had accepted that was all the help he would get, and we would just work the rest out for ourselves.
At that point, my world was rocked.
The doctor then went on to question Josh about his ability to function. He asked him if he was frustrated or unhappy. He asked him if he ever felt "dumb".
Josh's answer confirmed everything that the doctor had suspected.....everything that I had unknowingly denied. He was miserable. Barely coping, feeling stupid, feeling less than who he was.....or could be.
And I discovered that, in an attempt to protect my child, I had actually done him harm.
An appointment was made to come back, only next time my husband would come along. The doctor reiterated his ideas to my husband, making a case against the Concerta and for......
you guessed it.......
stimulants!
As he went on to explain to us, while the Concerta may be barely helping Josh to focus, it's not helping him enough. He may be able to keep his grades at a "C", but he won't ever achieve his full potential. And the problem with that is this: if Josh isn't able to function as a "normal" person, then he won't ever feel "normal". He will always feel "dumb" and as though he can't do anything right. Sometimes, doing barely enough can be just as harmful as doing nothing at all. Josh is at the age where he is learning to function and cope, patterns and habits are being formed, and ideas are being cemented. If the medication isn't helping Josh and
stimulating his brain to function normally, then he is being led to believe that he is not like everyone else, not as good or as smart. All he sees is his failures, and that leads to depression. The doctor pointed out that this is a critical time to get Josh on the right path, so that he won't be searching for unacceptable ways to stimulate his brain (drugs, pornography, etc) down the road. Those things can work as a stimulant and cause an addiction because it gives him the more "normal" feeling that he doesn't get due to the ADHD.
Now, I know I'm not getting all of this right. It's complicated and I'm not explaining it the best that I can, but the simple truth is that Josh needs something more and the time to do it is NOW. And the hope is that we can implement coping mechanisms now while on the medication so that his brain will begin to develop the proper paths to dealing with things and then, eventually, he won't need the medication anymore.
After discussing Josh's personality and our concerns, a stimulant was decided upon. Vyvanse. We went with the lowest possible dose (the doctor let Josh take the reigns as far as where he wanted to start and how high he would go), and have since titrated up a bit. Still not where we could go, but where we are comfortable. And this time, Josh is calling the shots. Only he knows how he feels, and we are trusting in his decision to get him where he needs to be. We didn't notice much change with the initial dose, but we also didn't notice any dreaded side-effects. As we moved up in strength, we were pleasantly surprised to find that there were still relatively few side-effects, the worst being an occasional inability to fall asleep at night. Our doctor pointed out that there are ways to cope with those unwanted side-effects, and Josh having a good breakfast of eggs (protein) every morning is one of the ways we are handling them. No one ever told us that eating a good breakfast would help combat a loss of appetite. Not once.
As far as the results of the Vyvanse, we are amazed! Josh is able to focus, but not only that. He is reading entire books! He can sit for hours and write in his journal. He can have meaningful conversations with the rest of us. He remembers to do his chores without being hounded for hours and hours to get them done. He is learning to make lists to help him stay on task, and, what's more, he is taking the initiative to do all of these things on his own.....I have done nothing! He fights less with his siblings and is more pleasant to be around, despite those typical teenage mood swings ;) He is happy.
And while I may never understand the path that brought us here, I can tell you one thing for certain.....once again in our lives, we have experienced a miracle. A "God thing". Whatever you want to call it, there is no doubt that God has once again intervened in our lives for the better. The idea that we would go in for poison ivy and come away with this result....not by chance, but by His work alone. We are thankful for His mercy and continuing grace in our lives.
© 2011