Hurry Up and Wait
As some of you may already know from some of my other posts, my youngest child is ADHD. He was diagnosed about 3 years ago, a feat that took me nearly as long to accomplish. I knew before he even started school, that he was "different". I had been mother and step mother 5 times over before my little one came along, I knew at least a little about raising children. Having lived with both the Alex before medication and the Alex on medication, I feel I've become quite good at knowing his needs and "quircks". It doesn't take me long to realize when we've forgotten to take a pill.
My son is very bright and likable. His teachers think he's a sweetheart, kind and creative. He has an excellent memory and is overly observant. He astonishes me still with the things he knows and remembers. However, when he hasn't had his medication, it is near impossible to keep him "on track" and though he is not hyperactive in the sense that he is in constant movement, his mind doesn't seem to stop. He jumps from project and topic in the blink of an eye and leaves you spinning trying to keep up with his conversations and requests. More importantly his ability to stop and consider his next move is completely lost. He tends to be overly sensitive, quick to anger and resorts to inappropriate behaviors that get him into hot water. This is my son without the help of his medication.
While on his medicine he is not "dopey". He does well in school because he can sit still enough to pay attention and is not distracted by the smallest of things. He has learned appropriate ways to deal with his anger and frustration and can hesitate long enough to recall how to use those skills. He is a wealth of information and creative ideas, but doesn't leave you drowning in an effort to keep up with his whrilpool thoughts. He can stop long enough to think through social situations and gets along much better with his peers.
For awhile after he was diagnosed, he was seeing a counselor and a specialist who prescribed his medication. A year ago we all agreed that we had found the right amount of medication and he was stable enough that we no longer needed their services and his primary care doctor could take over. I called his primary care doctor and asked if this was something he could do. I was told it was.
About 2 or 3 months ago I noticed that my son was starting to display some of his old behaviors while on his medication. I asked his teachers if they noticed the same, and was told they had not seen any change. I let it go for a couple of weeks thinking perhaps he was just having a rough patch. It was only at a recent parent/teacher conference I was told that indeed, my son was starting to exhibit behavior problems in study hall and at recess. In the mean time, I had called his primary care doctor to request an appointment to review my son's medication. Not being a doctor, I could only speculate that perhaps my son's entrance into puberty was making the medication less effective. At the appointment I explained my concerns. At one point, my son interrupted to ask a question not even related to the topic. I made a point of pointing this out to his doctor as a perfect example of impulsive behavior showing itself and the doctor shrugged it off as "he's just interjecting". I left the office feeling as though my concerns were completely ignored. I decided to write a letter to the doctor relaying my frustration and asking if I needed to find a more suitable physician.
I recieved a call back right away from the doctor himself. He was very apologetic but admitted that ADHD was just not something that he was very knowledgable about and he offered to refer me to a "specialist" (another general family doctor). A week later I recieved a large manilla envelope with enough paperwork to make my tax return look like a cake walk. There were forms for me and all his teachers to fill out. This all had to be completed and returned to the new doctor's office before I could even be granted an appointment. My frustration level grew. This is a child who has already been diagnosed and been recieving ongoing treatment. Now all of a sudden nobody knows what to do with him and I have to start all over again? In the meantime, 2 months have elapsed and my son's impulsive behavior is becoming more and more prevalent and starting to effect his performance in school. It has been exactly 3 weeks since I sent the paperwork back and I have not heard a word from this "specialist".
Once again, feeling as though I needed to become more aggressive in getting the answers and help I needed for my son, I called the office where we had originally been treated and prescribed the medication. I encountered the same obsticle here, being told that there was a waiting list into June. It didn't matter that he was a prior patient, his case had been closed and we needed to start over from scratch.
So we wait and I can't help wondering, if my son had any other type of disease that had been stablized through medication therapy, would he have to go through all of this when his condition was no longer stable? Perhaps his condition is not as dire as a heart condition or cancer, but it is still greatly effecting his quality of life, and it's not like we haven't kept up our end by keeping his doctor involved or monitoring his condition. We deserve a little better than this. It's a no wonder people with ADHD or similar disorders either go untreated or are treated inadequately.
Thanks for the input.
I find this condition to be frustrating for two reasons. One is the stigma that still exsists with the disorder. There still seems to be a lot of people, including professionals in the medical field, who think a diagnosis of ADHD is just an excuse for poor parenting. It's infuriating. I have friends with a son the same age as my son. He is very much like my child without his medication, yet his parents refuse to even consider seeking a diagnosis because they believe it's a phoney condition and that doctors will "dope up" their son. "He's just a rambunctious boy" they say and continue to do battle with the school and teachers over getting him diagnosed.
The other problem is I often feel as though I am the only one who understands my son and his needs. I know that's my job as his mother, but my expectation is that the medical professional I am counting on to help me monitor and treat this disorder knows my son and understands his condition. Instead I find that he is as clueless as the rest of the population. I understand why it is necessary to fill out reams of paperwork in order to diagnose this particular problem, my frustration is that I've already done all this more then once now, and it seems to me if we know he has the condition, why do I need to start all over again? The answer in this particular case is that his doctor doesn't really know my son or his disorder and we have to start all over again with a professional who at least understands the condition. It would be nice to have someone we could rely on to call and say "Hey, things are out of wack, can we reassess?" and not have to go through all this.
Perhaps part of my "high" expectation in regards to the medical professionals is because I work in a medical office. I work for specialists, surgeons, whose client base is generated mostly from referrals from other doctors who are not well versed in this particular field. I fully understand that a general family doctor is not going to know all there is to know about the human body. However, in the office where I work there are certain conditions that need frequent monitoring and regular appointments with our office, sometimes every 6 weeks, 6 months or one year, but the people with these conditions become well known to us. These people can call our office directly, not even have to call their primary care doctor (unless they need a referral for insurance purposes) and we will help them. Even if we have not seen them for years because their condition became stable, we still have access to their history and are willing to treat them as we would any other long time client.
I'd actually gone to the online sights you mention a couple of years ago. It's a decent resource, and Parent to Parent of NH is a good resource. I have also since found online forums and groups that are full of wisdom and support from families in similar circumstances. In fact one place I found that I particularly like is conductdisorders.com.
I must say, Pembroke school district has been wonderful and supportive. I couldn't believe the difference in their willingness to do whatever they could to help my son as compared to the Concord school district we had previously dealt with. In fact, I now believe that had I gotten this kind of support when I was having trouble with my daughter in the Concord schools, the outcome with her would have been much different. At my first IEP (Individualized Education Program) meeting in Pembroke the teachers and guidance counselor were impressed that I had already gotten a diagnosis for my son. They encouraged me to continue to be a strong advocate for my son and to teach him to advocate for himself as well. It's the only way this type of disorder can be successfully diagnosed and treated.
P. S.
I hope your experience as an adult with ADD has been at least a little better.
Slow Down and Watch
Terri,
It’s funny you should be writing about ADHD at a time when I am constantly defending my sons behavior against that diagnosis. I personally am “one of those’ who doesn’t believe in ADHD as a medical condition. I do, however, admire your strength and determination when defending your own personal beliefs, even though I might not agree with them. So, don’t take anything I say as an accusation or judgment because it is not. I am just sharing my personal discoveries and how they have worked for us outside of the often fallible medical world.
In the 1970’s my brother was diagnosed by his teachers as ‘hyper active’ and our pediatrician was a very old man with very old ideas (I think he still accepted chickens a as form of payment:). His prescription for my brothers ‘problem’ was one cup of coffee in the morning before school, and lot’s of physical activity. Believe it or not it worked. The coffee worked in much the same way as the ADHD stimulants of today do. More importantly we were to discover a year or two later, by a very attentive teacher, that my brother was dyslexic. After a few years of training, he mastered that disability and at the same time mastered his “hyper activity’ as well. This in the end was probably more due to his dyslexia than the medical condition known today as ADHD. My heart breaks when I think of what might have become of this fine young man if the doctors or teachers of today got their hands on him.
This brings me around to another point. I do not believe that ADHD is an excuse for bad parenting, but I do feel that the way the world is changing has a lot to do with it, in many, many ways. The list of contributing factors is long. First, most schools seem to have a very strong ‘must conform’ ideal nowadays and tend to lack tolerance for those who are different. Is it any mistake that ADHD children tend to be very gifted? I think not. They clearly do not fit in with the rest of the average group, but are lumped into the box and told to behave accordingly. I remember when I was in school we had the “gifted and talented’ wing. It was that place in the school where all of the ‘weirdo’s’ went to class. Yes, we called them weird and freaks, because they were different. While we average Joe’s sat twenty to a class learning about the mundane, the gifted kids were sitting in a group of maybe five debating the time and space continuum, acting out their studies in the form of skits, creating models, and listening to music. Why, because it worked for them and the school systems of yesteryear recognized that and made it possible. Those gifted children would have withered and died in the mainstream, for sure!
I believe that nutrition and environmental factors play a role in this as well; maybe even more so than the educational system. I read a study about the number of wealthy ADHD children versus the Lower or Middle Class ADHD children. Guess what? It seems that the more money you have the better you eat, live and are schooled. The number of well off ADHD cases are very small in comparison to those who are not so well off. Is that a surprise? No, it makes sense. The food we eat today contains pesticides, antibiotics, heavy metals, dyes, and many other offenders of optimum health. The environment is changing at a very fast pace these days affecting our health and lives minute by minute. I used to wonder why anyone would buy or build a house under power lines, until I discovered that it was what they could afford or worse, were not aware of the damage the electromagnetic fields of power lines have on the human body. Some may call that “conspiracy’ I however, do not.
Allergies are rampant now more than ever, whether it be food allergies or environmental allergies. I believe that on any given day our children do not feel one hundred percent on top of their game. The first time I heard the term ADHD in me and my husband’s life, I had taken my then 2 ½ year old to the doctor because I knew his ears were bothering him. When we arrived my child threw himself on the floor and proceeded to throw a fit that included head bashing, kicking etc. The doctor stood and watched, waiting for it to pass. It did not pass, and only when the doctor suggested we have the visit outside in the fresh air, did my son perk up a bit. Two things happened that day; the doctor immediately overlooked my son’s ears and proceeded to discuss the possibility of ADHD. I was livid! In the end, I refused his referrals and was to find that my son was having a bad reaction to over the counter cold medicine (the ones they just removed from the market) and he did have an ear infection.
Is my child still a handful? Absolutely. Yet I have decided to take a look at all of the other factors and have found that nutritional deficiency is the main culprit. When I asked the doctor about my son’s uncanny ability to exist off of only mac & cheese, they assured me, “its fine don’t worry, he’ll survive.” It wasn’t fine, my son was severely deficient, and it was affecting his behavior. He is plagued with inner ear problems and I have most recently started to wonder if he is color blind. He has no sense of color at all. All of these things can lead to severe frustration, resulting in an uncooperative child. In the end, he is on a strict regime of Calcium Magnesium, Acidophilus with Bifidus, Omegas, Iron and Whey Protein. The result has been nothing short of miraculous!!!!! As for the ears and eye problems, I still have to depend on a doctor for that, but I do so with trepidation. Like you said, I know my child better than anyone else. I will use my intuition above any diagnosis the medical field may give.
The so called ADHD children are special and I feel that they are here for a reason. Why would we use dangerous medications to mask their god given gifts no matter how disruptive we feel they may be? The meds are just that, a mask, a cover-up. The real problem is never discovered and cured. If for some reason the meds were gone or not available, than what would we do? We would be forced to take a closer look and find an alternative solution. Why not do that first?
There is a wonderful group in Washington State called HANDLE. The HANDLE Institute provides an effective, non-drug alternative for identifying and treating most neurodevelopmental disorders across the lifespan including Autism, ADD, ADHD, Dyslexia and Tourette's Syndrome. HANDLE incorporates research and techniques from many disciplines. It includes principles and perspectives from medicine, rehabilitation, psychology, education and nutrition. It is founded on an interactive, developmental model of human functioning. The HANDLE Institute International, LLC offers clinical services, community information, and professional training programs. HANDLE's main facility is located in Seattle, Washington. HANDLE satellite clinics serve various neurodevelopmental needs and different geographical regions.
I have personally been considering one of their training programs. I would like to see their work become more main stream and widely available in other parts of the country. A HANDLE Institute right here in New Hampshire would be a God send to many families and many children. In my opinion I urge us to look into alternative therapies rather than drugging the hope of our future.
~Tracy M
Thank you Tracy
I don't see anything you said as accusatory, although I must say that it perfectly illustrates the misconception and assumption that I was just looking for a simple solution to my son's problems.
I did not walk into a doctor's office one day and say "I think my son is ADHD so do something about it". I walked into the doctor's office and said "I don't understand my son, can you help us?" By the same token, the doctor I approached did not take one look at my son and say, "he's ADHD". As I've stated before, it took YEARS of having him evaluated by several doctors, counselors and the school to have a child development specialist at Dartmouth Hitchcock in Hanover finally tell me that he was ADHD. I was actually shocked by this diagnosis at first because I thought, like the majority of the population, that it was a bull shit disorder. During those years of evaluation we tried various treatments including exclusion of certain items in his diet and the inclusion of some (like coffee and omegas and whole grains!). Perhaps there is some truth in the rich v.s. poor variant, since I was a single mother struggling to make ends meet and certainly couldn't afford the cost of some of the special foods doctors suggested. Also, part of my shock over this diagnosis was due to the fact that I never once thought of my child as being hyperactive (and still don't).
When the specialist in Hanover diagnosed my son, I told him what I thought of his diagnosis. He explained to me that this was a common reaction he sees. He blamed the medical professionals and parents who for years had been treating children with behavior problems as ADHD without actually bothering to get a diagnosis first. He explained that many doctors used drugs as a way of diagnosing instead of actually evaluating the child first (if the drugs worked, then ADHD was the diagnosis). The reams of paperwork the teachers and I keep having to fill out is one way the doctors determine whether a child has ADHD prior to actually prescribing medication, counseling and other forms of treatment.
I also am a person who doesn't trust drugs of any kind. I take allergy medicine only when my body is covered in hives and/or my eyes are so itchy and sore I can't even see anymore. I refuse to pump OTC "medications" into my children because I worry about the strange chemicals in them being more dangerous then the cough or sniffles they are suffering through (read my posts about Snake oil salesmen and being a mean mother). I have always believed that the majority of drugs on the market today merely relieve symptoms but don't actually fix medical problems. I scoff at many of the commercials on TV these days, wondering why anyone would want to risk some of the side effects so they can relieve some minor pain or make their sex life better. Everyday in the medical office I work in, I see the patients who take increasingly greater amounts of drugs in order to "solve" the side effects of other drugs. It's a vicious cycle sometimes.
With my son, although he takes the medicine during the week, he doesn't take all of it when he's not in school, such as weekends and vacations. I cut back on the dosage and don't give him his second dose at all. It's not that I don't believe it works for him, it's that I do still worry about other unknown side effects we have yet to discover. I know I have the patience to deal with whatever issues his attention deficit may bring up. His peers and siblings are another matter and he spends the majority of his "free time" by himself or just with me. One of the reasons I got a dog was for him, hoping that the dog would give him the companionship he misses at times with his peers. My son gets along splendidly with adults, but struggles with children his own age because of their intolerance of his "differences" and his own inability to grasp the subtleties of "proper" social behaviors. He has been kicked out of numerous day care facilities because of this.
I don't look at my son and say "what a problem child" nor do I think he has "behavior issues". I look at him and understand that he has difficulty getting along with his peers because of things like he can't wait his turn. He just can't. It's not that he's being selfish. He's one of the most kind-hearted, observant people you will ever meet. It's just that he really can't help himself. I can tell him to go upstairs and pick up his laundry off the floor then bring it downstairs and he runs upstairs to comply. A half hour later I go to check on him and he's sitting on his bed playing with his guitar, the chore completely forgotten. Or he'll pick up the clothes but "forget" to bring the basket down. He's not being uncooperative or defiant, he simply forgets in the interval.
My hope with my son is that with counseling and diligence he will eventually learn to control his impulses and urges without the use of drugs, but in the meantime, it really is the only way he can function in a world that does expect him to "behave" a certain way. If his inability to function in school without medication (and he has an IEP in place that accommodates his way of learning while still allowing him to be a part of the general population) causes him to fail in school, then what are his chances of succeeding in the "real world" when he's older? Let me add that the medication does not leave anyone, including my son, with the impression that he's "doped up". His creative brilliance still shines through and the A's and B's on his report card look a lot better then the "unsatisfactory, below grade level" reports I was getting in his early years in school.
I have an 18 year old daughter who I have in the past labeled as a "problem child" with "behavior issues". She has been in trouble in school, with her peers and with the law since she was in middle school, probably even longer. I kept telling myself for years that she was just stubborn and strong willed. I took her for counseling, signed her up for numerous activities outside school and home in hopes she'd find her niche in the world. I tried becoming more involved with her teachers and with her. She continued to fail in school and struggle with life in general. Like her younger brother, she is bright and creative. She will not graduate from high school. Her prospects for her immediate future are dismal. She will spend the first part of her years in the "real world" working twice as hard, trying to make up for time lost during her school years. I look at her everyday and feel tremendous guilt for not having been able to help her the way I've been able to help my son. I can't help but wonder now if she is the product of misdiagnosis and my lack of "good parenting".
Perhaps your own experience with your child is different then my experience because you are dealing with something other then ADHD. That is exactly the reason the specialist in Hanover advocates diagnose FIRST, then treat. I would never look at a child who is behaving badly and just assume they are ADHD. Neither do I now look at a child already diagnosed with ADHD as having a bogus diagnosis.
It looks to me like you're doing the right thing. You're attentive to your child's condition and needs, and you're persistent without being unreasonable.
I can't speak to the paperwork issue other than to say that it's all to typical in my experience. Between government and insurance company regulations and the associated paperwork it's a real problem for both patients and providers.
I was thinking that there has to be numerous groups to seek assistance and guidance from concerning ADD/ADHD, both locally and via the Internet.... give me a second..
I just 'Googled' "Concord, NH ADHD help associations" (minus the quotes). It looks like there are numerous sites listed on this results page.
One of the listings in the Google results page "Parent to Parent of NH" has a bunch of links to other organizations. In fact, I can use one of the 'Legal' links myself at the moment!
I wish my parents were as attentive as you are. They were good, well-educated parents, but for some reason I recall my mother frequently complaining that "You never complete anything you start!". Unfortunately I wasn't diagnosed with ADD (or my other psychiatric issues) until I was well into adulthood. Your son is fortunate to have a mother who sought the help he needs while he's still young.
Keep up what you're doing. If you don't find help in one direction, try another. Seek out others who have experience dealing with 'the system'.
And good luck.
TR