Thursday, April 29, 2010

Opening Up - Long but Important

I have thought long and hard about whether to share such personal information so publicly, but after a lot of time and consideration, I decided it was worth opening up a bit, as a parent, and perhaps drawing from some of your own experiences. However I want to shed some light on my perspective without the fear of drawing labels or inaccurate assumptions, so I ask that you forget all that you have heard or assumed about ADHD in the past and read this with an open mind.

A select few of you know that Thomas was exhibiting some unusual behaviors at school last year, and we took him to see a psychologist for some guidance. He was never defiant nor any threat to any of the children around him. In fact he always strove to do well. His teacher always stressed that he was a very bright, well-liked, nice boy to be around, and that he didn't seem to be able to control his behaviors and impulses, no matter how hard he tried. I can't go into great detail now, but amongst other things he was always playing little games with his fingers and making corresponding, often loud, noises to go along with all the stories he had racing in his mind. He also had extreme difficulties with changes in routine and was particularly hard on himself. He exhibited some OCD tendencies and was very much a perfectionist. He could not handle any type of failure and was easily overwhelmed. At recess he was perfectly happy to play by himself. As his doctor put it, he just "thinks differently" than other kids. Again there was much more to it than what I have mentioned here, but those were some of the concerns we faced.

Allow me to share what an incredible child Thomas is. He is caring, helpful, intelligent, thoughtful, and a lot of fun to get to know. His thought process is not just unusual; it is interesting and often insightful. His ability to develop and share a very detailed, adventurous story at the drop of a hat has always amazed me. He can go on and on forever with his elaborate enactments. He thinks in patterns and is very particular about almost everything. He is an unbelievably loving big brother and recently melted my heart when he told me he really liked talking to me. (Often when he comes home from school, Gabe and some times Logan are asleep, and Thomas and I will just sit and talk about anything and everything.) He finds Brian's and my sense of humor extremely entertaining and has been known to giggle and laugh at all times of the day. He is endlessly silly and hyper but always with the sweetest of hearts. He LOVES reading, magic, jokes, trains, talking, running...

His difficulty in settling down has always been a challenge. As the typical saying goes, he acts as if driven by a motor, unable to stop or even slow down. I often tenderheartedly joke that I need to install a dimmer switch on him. (He knows this and thinks it's quite funny.) As a toddler he would run in circles for a half hour at a time. No matter how bright a shade of red his face would turn, he would keep going and going, and then he would just go some more. In preschool he did the same thing. His teachers said they had never seen anything like it before.

I wondered, early on, about his hyperactivity, but never believed he had any attention deficit. As his first grade teacher put it, he seemed distracted, and one would never believe he could be paying attention, given his actions, yet when asked he typically knew exactly what was just taught and understood it perfectly. He has always caught on to reading, math, science, board game rules, and such, without any real difficulty.

What I didn't know, last year, was that the traits/characteristics/symptoms that define ADHD go farther than to describe a child who cannot ever concentrate; children with ADD and ADHD can usually focus just fine on the things they find particularly interesting. However they get bored easily when not exceptionally interested and find difficult tasks instantly frustrating and overwhelming. They have difficulty controlling their impulses and following specific directions, and they often make very simple mistakes on schoolwork. They are always losing things. They are also all different in the symptoms they exhibit, so another child with ADD or ADHD may share some of these symptoms but not all, and some children who exhibit these symptoms do not have ADHD. After all, most of the associated behaviors are quite normal for children Thomas' age. The difference that warrants the diagnosis, from what I understand, lay both in the frequency and severity of said symptoms.

I digress; I did not intend to educate, particularly as I still have so much to learn.

When we took Thomas to the doctor last year I was expecting some help with his behaviors. I was at a loss. I didn't understand them, and I didn't know how to help him, particularly since the biggest challenges he faced were at school; I really didn't find that he was that difficult at home; sure I had plenty of opportunities to discipline, and I was certainly not exclusively successful there (Ha!), but isn't that a normal part of parenting? You read above how I view him. I have always placed emphasis on his strengths and talents, so it was not that we didn't have any issues at home, but I felt they were, for the most part, going okay. His finger games seldom interfered with our unscheduled, unstructured, quiet home life. How could I help him change his behavior in a completely different environment, where I could not physically be? (We had already tried charts and other typical school teacher suggestions, with zero results. In fact, Thomas found them to be a terrible source of frustration and stress.) So, we asked for help.

I was completely shocked when the doctor wanted to "talk about diagnosis" one day. I later felt less than smart and somewhat blind after I looked back and realized the doctor probably thought that was why we went to him in the first place, but I couldn't have been more surprised at the time. He actually thought Thomas may have PDD-NOS (a pervasive developmental disorder that did not meet the full definition of Asperger's or Autism but shared some characteristics of both) and ADHD, though his evaluation was not yet complete at the time.

The following months were a roller coaster for us. We had to complete a survey and wait for answers, and then the survey was lost and we had to do it all over again. Our doctor left his practice and went out on his own, so there was a lot of waiting and waiting and then waiting some more. Finally he received all of our paperwork and was able to review the scores, and then after all of our initial shock, confusion, and then actually starting to feel like the pieces of our puzzle really were starting to come together, he told us that while he initially thought Thomas had PDD-NOS, the scores indicated he actually was nowhere near such a diagnosis. Of course we would still need to help him with those associated characteristics and challenges, but all of his struggles did not add up to any sort of related diagnosis. ADHD, at that point was questionable. He said, according to our scores Thomas did have ADHD, but according to the teacher's scores, in which we placed the most value, considering that's where the problems were arising, Thomas scored just below borderline... The doctor basically told us there was no real diagnosis at the time and asked what we were, then, looking for.......... (Remember that I was not looking for a diagnosis, in the first place.)

Fast forward to this year. We live in a new neighborhood, and Thomas goes to a new school. He has made a number of friends and seems to be making social strides. He is once again getting great grades, but his behavioral marks mirror last year's, in that they are steadily declining as the school year progresses. His new teacher alerted us to the same concerns, and seems to be getting increasingly frustrated with his constant noises and trouble staying focused. Again no one argues his ability to do very well, however he now needs constant reminders to stay on task and follow directions, and he regularly needs extra time to finish his assignments, plus his little games are very distracting to his classmates. He also loses things like I eat chocolate. (Have you seen my waistline? It's not pretty.)

We started meeting with a new psychologist, and she recently completed a second evaluation for ADHD. She was very thorough, and her process was wonderfully comprehensive. She said that Thomas' previous evaluation did in fact yield an ADHD diagnosis, though it was reported as borderline to mild. What she found was that, given the newer survey scores and in-office testing, Thomas' ADHD is actually moderate to severe, often manifesting itself as severe. She explained that she tested his IQ as a measure for performance comparison when given tasks that were typically difficult for people with ADD/ADHD, and he had "superior intelligence." While I won't share numbers (I honestly don't typically find great value or importance in IQ), his numbers were well above normal. However, when provided distractions and difficult or boring tasks, he performed significantly lower (still above the absolute average, but perfectly within the normal IQ range). This, to me, explained a lot, and it made me feel a little better because I knew my appreciation for his cognitive abilities was not just all in my head, after all! It also partially explained how he still achieved good grades, and it indicated great promise for reaching an even greater potential, with treatment.

Switching gears, I just have to say that I never intended to write so much about this whole experience, but I want you, as my readers, to understand the process. I think there is a common perception that many kids are misdiagnosed with ADD because it is an easy fix... It's entirely possible that such an explanation is valid in many cases, but it isn't always true either. The challenges Thomas faces are very real, and they are challenges that make him stand out in a crowd; he is not just a typical active boy. I am hopeful, now, that we will get the help we need in order to lead him on the right path toward achieving his highest potential, but I expect to be fully engaged the whole way through, reading, learning, and making choices that don't rely solely on medication. We only want answers that are true and helpful, and we certainly were never looking or hoping for any of this as "an easy explanation" or excuse. (Yikes!)

I don't expect to explain much detail about this in the future; I am accepting the diagnosis as a tool for success. However I wanted to share this story so that if it comes up casually in any future posts you won't all be left clueless! Over the next week or so we will be working closely with Thomas' teacher and doctor to come up with a plan that can help him. The recommendation was a combination of treatments to include goal setting, counseling, and medication. If we choose a trial of medication, it will be in assistance, as one small part of the process, however my understanding is that in some cases it can really help, and while I hope to employ dietary changes too, I understand that in many cases that is not enough. At this point I'm placing the majority of my trust and thirst for knowledge in the hands of the professionals. On the other hand, I would love to hear from those of you who have shared some experiences as a loving parent of a child diagnosed with ADHD.

I strongly believe that we all have learning differences. Thomas is just lucky enough to have had his differences identified. There is a wealth of knowledge out there about ADHD, and there are many tried and proven methods to improve the learning process for kids like him. Imagine where we ALL would be, if we had such tools at our disposal. He is going to do AWESOME things.

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