My name is Chris Heffley. I am the husband. With my wife’s gracious permission, I hope to contribute what I can to this blog. Raising our children has been a team effort. Kristal and I met, when Amber was three. As I am a child of divorce, raised by four loving parents, it was my goal to provide Amber with the same environment. I have always considered Amber my first child; I had been given a good example throughout my life of how not to make the “biological” or “step” distinction. I was always treated as a son by my mother and stepfather growing up. There are many, many, times when I would have preferred to have been less noticed or even outright ignored, but I usually got caught doing whatever it was I wasn’t supposed to be doing in the first place. This subject could probably fill a couple more blogs, but that was my adolescence and not Amber’s.
Kristal Says “First grade was not a fun time for Amber or our family.”
This was the understatement of the year.
Daycare and First grade were absolute HELL. Neither Kristal nor I were “Disciplinary problems” as children. I don’t know if being a rebel rouser as a kid can prepare you for this or not, but coming from a fairly innocent, possibly naïve, background certainly doesn’t give you any more great wisdom of how to handle a child with “discipline” problems. When I heard the term “discipline problem”, to me it meant that Kristal and I were somehow failing to properly “discipline” Amber. I knew she was a “rambunctious” child. I had been told so by friends and family at visits and parties. I certainly knew she was “more trouble” than I was as a child. There were many subtle and not so subtle ways I had been told in the three years that I had already known Amber that she was “different.” After a while it gives you a complex, how is it that I am such a rotten parent. Don’t worry; I have defiantly gotten over that. You do develop self-doubt, you can’t help asking “what am I doing that is causing my child to be so “different”?” It becomes a roller coaster of emotion. First you want your child to be happy, but you need to teach them to be able to “fit in” to society, if you don’t, they may not be happy….
At the end of every day at daycare and school we were given some kind of “problem” report. Amber won’t pay attention, she is disturbing other students, she won’t stay in her seat, calling other students names, she is acting “inappropriate”, and on and on….. Eventually we were constantly trying to address Amber’s behavior so she could go to daycare and school without being a “discipline problem”. As Kristal has said we tried time out, 1-2-3 magic, taking privileges away, giving rewards and many more, so many I have forgotten.
It consumed our life. . . .
It accomplished little or nothing. . . . . . .
It was extremely frustrating . . . .
It was happening every single day. . . .
We were worn out . . . . .
We had also, just begun our journey.
The Meeting (oh, by the way, your child is special)
Kristal talked about our meeting with Amber’s elementary school. I must put in my two cents here also. This meeting happened in the last weeks of school; Kristal was 9 months and 35 days pregnant.
Ok, just trust me she was really, really, close, looked like she had a watermelon in there. Not one of those seedless ones, I mean belly sticking out a block in front of her hobbling around like a penguin. The suit case was packed for the hospital, Lamaze class certificate in my wallet, full tank of gas in the car at all times. We were close!!!!
This is not to say that we were too preoccupied with the birth of our second to be dealing with the “discipline problems” of our first. Quite the opposite we were so overstimulated by all the issues in our life, I am surprised we retained our sanity.
The meeting was surreal. Our daughter’s school was now officially telling us that Amber was “special needs”. It went on for at least an hour, maybe more. There were four of them and two and three quarters of us; remember the watermelon was there too. They break it to you in stages. You get a sprinkling of test results here, some professional opinions there, a few forms to sign right here, all mixed in with just enough legal mumbo jumbo to keep your head spinning for hours.
I should say, I completely support our school system. I also think that we are very lucky to have been in a good school system. For the most part, they have been helpful in dealing with our daughter for many years. They have a skill I do not have, and you couldn’t pay me enough to do their job!
When a professional educator tells you your kid is special needs you take notice . . . .
I have heard of parents who fight the label.
I have heard of parents who remove their child from the public school and choose private or to home school their child.
I think there are about as many reactions to this as there are people.
I think each parent must make their own conclusions about what is best for their child.
I was calmly horrified and relieved. . . .
I was calm because I couldn’t really handle horror with everything else that was going; remember the watermelon? I was relieved because we were moving in a direction. At this point any movement away from what we were currently doing was good with me.
A few days later on June 3, 2001 despite or because of my 3 years of efforts with Amber, she learned to ride a bike.
Oh yeah, that watermelon got pulled out four days after that, and it was our 10 pound 3 ounce son. It was the last day of school before summer break and we had already had quite an adventure.
Trichotillomania (just another bump on the road)
I must admit I don’t understand the hair pulling. At the time I did a lot of research on Trichotillomania. There are many more people, who contend with this than I ever imagined. There are all kinds of theories on the internet, one of them connecting ingesting foods like eggs to the disorder. It was interesting, since eggs are still one of Amber’s favorite foods, but I wasn’t convinced. She still eats eggs but doesn’t pull her hair out anymore. The why, of the disorder really didn’t concern me, figuring out how to stop it consumed our family.
How do you stop it? You talk, you reward, you yell, you cry . . . .
None of our efforts could stop it. Scarfs, gloves, hats. . . You just couldn’t watch her every second of every day. As soon as she could get one second, where someone wasn’t watching she would pull one more hair. I have heard it called a ritualistic almost grooming or over-grooming behavior like nail biting. To me it was just horrifying.
It was absolutely horrifying; to see a 7 year old girl, pull all of her hair, out of her head, in a matter of a few weeks, one hair at a time.
The Last Straw (when special becomes scary)
We have now moved forward in time to February or March of 2002.
I could check the hospital bills and get you the exact date but I don’t think it matters that much. I do remember the total was around $40,000. Yep, that’s right FOUR-TY THOU-SAND DOL-LARS. Don’t know if that is a lot to you, but it was about my salary for the year at that time, before they took out taxes. O-U-C-H. We did have health insurance through Kristal’s work that covered most of it, like 99%. I still think it is important to mention the amount even if we didn’t have to pay out of pocket. It is not monopoly money, it came from our insurance. What if we didn’t have insurance? I don’t even want to think of that. I feel for people, who cannot afford health insurance, but that is another blog. So I could look up the bills, but I don’t want to see them again and I am rambling off topic.
Amber is now almost hairless, has lost about as much weight as physically possible, and is constantly moving. I mean really moving in odd ways. She is doing somersaults up and down our hall nonstop. She looks scary. I look back at photos of Christmas 2001 and can see the changes. She looks like an anorexic.
How did we get here???
I have looked back many times to this particular period. It was the time between the birth of our son and Amber’s first admission into the hospital. What I have taken away from this experience is the science of treating mental health is more educated trial and error than most of us uninitiated realize. I once had this naïve, optimistic, outlook that when we started down the medicine journey, there would be some chemical or combination of chemicals that would just fix it all. Or at the very least make Amber behave “normal.” So far, we have not found that “ Holy Grail.” I have since seen the almost medical results of psychiatric medicine, when it brought my mother back from one of the darkest times in her life. We have not yet achieved any medicine-induced breakthrough moments with Amber. In all honesty, there have been many times I have questioned if the medicine is “worth it” or “doing more harm than good.” We usually are reminded later in one way or another, at least for Amber, how necessary the medications are.
After our “special” meeting with Amber’s school, we were referred to a school recommended psychiatrist. I will tell you in advance, this did not end well. While I am sure the doctor was doing his best, I feel like, in hindsight, that there wasn’t enough emphasis on collecting good information about Amber’s symptoms. I think that he has seen so many “rambunctious”, “hyperactive”, and distracted kids referred to him by the schools, that he had fallen into a rut of labeling all kids as “ADHD”. I don’t believe Amber ever fit into that pigeon hole, no matter how hard they tried to stuff her in. The actual major diagnosis was Oppositional Defiant Disorder, which is just a nice way of saying she won’t do what she is told to do and more often than not, will try to do just the opposite. I have had many other terms for it throughout her life, but we won’t go into that . . .
The end result of our meeting with the first doctor was that Amber was put on Adderall. I am not a chemist, but basically Adderall is a stimulant. Through extensive research we have found stimulants are bad for Amber. Maybe bad is not a strong enough word, they are a disaster. She was a mess. It took all of her “special” characteristics, and turned them up to insane levels. In eight months, she went from special to an absolute walking chaos. Constant movement, like Kristal said, “She did the repetitive headstands and somersaults”. I hope most of you cannot imagine what this truly means. Amber would do somersaults, whenever she was not sleeping or eating. She could not or would not set still. While all this was going on, keep in mind we had an infant in the house. We had found our own psychiatrist, but the medicine changes were not getting results. I think it takes a long time for a doctor to truly understand what is going on without 24/7 observation.
I can vividly recall our frustration with the whole situation. Kristal would take Amber to appointments, and we would be trying a new medicine after each appointment but with little or no results. I remember thinking that surely the doctor must be seeing someone else’s kid because what they are doing isn’t helping anything. This went on for about six months. One night, we ended up in the emergency room. We had given Amber her medicine and put her to bed. A few minutes later Amber called out to us. When we tried to talk to her, she sounded like she was drunk. Then, we noticed her tongue had swollen up about twice its normal size. We immediately put her in the car and drove to the hospital fearing it was going to swell further and she could suffocate. Once there, they gave her some medicine to reduce the swelling, and we took her home a couple of hours later.
Everything finally just slowly spun out of control to the point, where we decided to have Amber admitted to the behavioral hospital. She was almost bald from pulling her hair out, her spine was red from rolling over and over doing somersaults, and she looked like if she lost another pound she was going to blow away.
Amber’s First Sleepover
I think every parent can appreciate the mix of joy and anxiety that comes with their child’s first sleep over. On the one hand, you are concerned about your baby leaving the nest. On the other, while your children are gone you get some rare couple time. In our situation couple was almost nonexistent. Ok, so Amber wasn’t at a friend’s house spending the night, she was in mental hospital, and we still had an infant at home. But believe me it was quite relaxing compared to what had become the norm in our life. Sometimes, it takes stepping out of a situation to fully realize just how bad it is. Things had just gradually escalated to the point of chaos, and we had grown accustomed to it. I felt guilty, when I realized just how good it felt not to be dealing with the constant terror of the behaviors that had consumed our lives.
Amber’s stay in the hospital was an eye-opening experience. It was the first time anyone told me that her behaviors were not our fault. Don’t get me wrong, people just don’t tell you that you are bad parents when your child misbehaves, but the implications are not so veiled. Typically, the friendly parental advice got me. Like, “Have you tried time outs, (you idiot)?” or the recommendations of books or even parenting classes. I am sorry, I hear them, and I think, “Oh, apparently, I need a manual or some sort of instruction for what has come naturally to the rest of the human race for thousands of years. I must be “special” also.” I don’t care how hard people try to be professional or nice, they judge parents based on the behavior of their own children.
This was the first time ever a professional told me that we are dealing mostly with a chemical imbalance causing this behavior and not the environment. It made me feel better about myself. After all, Kristal and I were also responsible for raising our now infant son, and if we were screwing up this bad . . . .
During those four weeks, it was like living someone else’s life. We would visit every day and had fallen into a routine that worked it all out. There was no chaos in our lives and was for the most part relaxing. Kristal and I got to enjoy our new son together, something we hadn’t done for the first six months of his life. In the end, we transitioned slowly to having Amber back at home, and as Kristal said made some positive changes for her daycare. I don’t want to paint too rosy of a picture. There were still issues, when she came home. But Amber was better on the meds, and Kristal and I could deal with her without needing them ourselves.
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