ADHD

Diagnostic Appointment Delayed

I made the appointment three months ago. I made it after a hard day where I realized that I needed guidance on how to help my teenage son shift into adulthood while managing his own particular mix of capabilities and disabilities. I needed a doctor to talk with him about the medicines he takes, so that my son is prepared to make rational decisions about those medicines rather than making reactionary decisions.

A month passed and things did not get easier. We ended up meeting with a general practitioner to adjust meds. I met with the school to adjust his schedule. I learned about programs that become available with a signed diagnosis letter. I was glad to be able to say “We already have an appointment scheduled.” We were struggling and muddling toward solutions, but I knew that an appointment was scheduled with a doctor I trust. I was willing to wait so I could see this particular doctor.

It was all lined up. The appointment was today. I could get the school form signed. I could get prescription refills. Howard went on the run to get the college kid from school. I arranged for my neighbor to pick up the elementary carpool. I’d cleared and defended the day. I didn’t know all the results that the appointment would bring. Maybe a new diagnosis. Maybe a process to switch medications. Maybe just affirmation that we were already doing all the things that were necessary. But at least I knew that I would no longer be waiting for an appointment. We would then be on the patient list rather than the New Patient list, which meant follow up phone calls and appointments would be handled far more expeditiously.

This morning I got a phone call. They had to reschedule. Next available appointment is January 5, twenty-five days from today. I get another month of muddling through and waiting for an appointment. I’m not mad at the doctor. He didn’t want to have stomach flu today. I’m certain he would much rather have spent his day meeting with me. Yet the cancellation of the appointment hit me hard. Today has been hard. Sometimes I don’t realize how much emotion I have riding on an event until the event is cancelled or changed.

I think this is one of the hardest aspects of mental illness. After making my way over the hurdle of admitting I needed professional help for my child, I had to wait. Then I had to talk about the appointment to school staff. Then I had to go explain to a general practitioner why I needed an interim prescription until I could see the psychiatrist. With the appointment moved, I had to have all of those conversations over again. I had to call the GP and say “Would you please write this letter that the school needs?” because my son can not afford to wait until January for the services. I had to ask the GP for a prescription extension so that we won’t run out before we have the chance to meet with the psychiatrist. Across the middle of this, our insurance will be switching over to a new plan on January 1st. This will probably be to our benefit, but it still requires me to adjust for the new company.

I have enough force of will and comprehension of what needs to be done that I can wade through all of that. I want to cry for the families who have no idea how to navigate to get mental health care and who don’t know what questions to ask at the schools to get help. It has been confusing and exhausting. Instead of exiting today with a new health partner and a new course, I am facing another month of stopgap measures. I don’t like stopgap measures.

So we do the only thing we can do, which is to keep facing each day and do the best we can. The good news is that something in the medicine switches, therapy, and schedule switches has been helping. Life is better for him now than it was two weeks ago. We’ll just keep on doing the things that seem to be working until we can have the diagnostic appointment that we need.

Finding Levers to Remove Anxiety and Depression

When I had my first panic attack it was an extraordinary event. I choose that word carefully, because anxiety manifesting as body panic was an event outside my usual experience, thus: extra ordinary. Unfortunately it was an experience that lacked any of the positive traits that the word extraordinary usually implies. There was nothing fun or exciting about it. All I knew for sure was that my body was behaving in an alarming fashion. My heart raced and beat irregularly; my breathing constricted; I was cold; and I could not stop my hands from shaking. I knew that something was wrong, so I saw a doctor who found nothing in the physical data to explain my experiences. He suggested stress. I remember him suggesting it, but the suggestion rolled right off of me only to be remembered months later after I had already figured out that anxiety was the problem. I found ways to de-stress my life and the anxiety went away. Mostly. Until it came back and I realized that I had to address it instead of trying to ignore it out of existence.

It is easier somehow with an extraordinary event, some thing we can point at and say “That is outside of usual bounds.” But most mental illness does not manifest suddenly and dramatically. It creeps in, becomes part of the fabric of life, erodes what we consider normal. I saw this with my anxiety. After entering with a bang, I adapted to it, got so used to it that I hardly even noticed it anymore. “I’m better now.” I’d say, while adjusting my schedule to give myself extra space. If pressed, I would acknowlede that if it ever again got as bad as that original onslaught, then I’d have to do something. I wonder now why I did not take that lull as a chance to dig in and find ways to heal. Truly heal. As I’m trying to do now in the wake of the second extraordinary onslaught. I’m a year and a half into that healing process and I’ve still got terrain to cover.

Howard’s periodic depression has been part of the patterns of our lives ever since I first met him. We built our lives around it, planned for it, explained it in a dozen different ways. “Everyone has good and bad days” I assured both him and myself. Eight months ago Howard began to call out his depression for what it is. He started recognizing it as a thing to be faced and changed. The more he called it out, the more we saw it, and we had to wonder had it gotten worse or were we just noticing instead of ignoring? We spoke with our regular physician and got on the waiting list for a psychiatrist. Howard has been amazing through this process. I’ve watched him spectate and analyze as he carefully deconstructs his old coping mechanisms. We’re beginning to build new ones and I am very happy to see him healthier in both mind and body. It takes amazing courage to look at a long standing pattern and choose to change it, particularly if there is no extraordinary event to spur the change.

I think Howard’s courage is what lets me be so calm as I look at my daughter Gleek and see the patterns around her. Just as our family structure has been built around his depression, it has also bent around Gleek’s intensity. Her ADHD was diagnosed years ago and treatment helped, but more is needed. Over the last two weeks her anxiety both at home and at school has pushed out of the ordinary. Her teacher has noticed, the school psychologist has noticed, and my own observations concur. She needs something different, more than I can fix by making sure she eats well and exercises; more than me helping track her homework, buying her books on stress management, more than yoga sessions, a sand garden, and long rambling talks at bedtime where I help her sort through her thoughts. As I type this list and it gets longer, I see how very hard we’ve been working to give her good coping strategies. And it has worked. Gleek is amazing. She is able to spectate and analyze with a maturity beyond her twelve years. Her innate strength lets her keep it together and choose the least destructive coping mechanisms when the anxiety strikes. After all of that, she still needs something more, something different. I’ve scheduled a full evaluation for her. We’ll be re-visiting the ADHD diagnosis and considering possible treatments and therapy for anxiety.

One of the hardest parts about mental illness is that it all takes place inside the brain. It is tempting to believe that we can just think our way out through willpower and motivation, but this is like trying to move a rock with your bare hands. You can do it if the rock is small, but sometimes it is a boulder sunk deep into the ground. Then willpower and motivation must be applied to a lever, for example: a treatment plan formed with the advice of psychological experts. The first step to finding the right lever to remove your rock is being willing to admit that this rock is in your way, that it needs to be moved, and that you probably can’t move it by yourself. The lever you need may be a lifestyle shift, medication, therapy, service to others, restructuring relationships, or seeking healing through faith. Finding which life changes you need–and applying those changes–requires great motivation and willpower. The answers are as individual as the people seeking them.

My family has some rocks we’ve been walking around for a long time and I’d love to take a jack hammer to them, but I’ll settle for some good levers and a solid team willing to help. Now is a good time to get started.

The Choir Concert

“Is Gleek’s Mom here?”
I looked up from the row of chairs I was helping to set up. “Yes?”
One of the choir directors came over to me with an earnest look on her face. My tired brain flitted over reasons she might need to see me. Top fear was that Gleek was not cooperating with the pre-concert practice or that she’d had a meltdown. I knew she was pretty keyed up, over tired, under fed, and with some pain in her mouth caused by twelve year molars trying to make an entrance through her gums. With all that, it seemed likely there would be some sort of issue. Getting Gleek dressed and out the door had been a significant cat-herding experience, which was why we’d barely had time to feed her a light snack with a promise of Wendy’s after the concert.

“I just wanted to make sure that you knew the kids are supposed to be in best Sunday dress, because Gleek’s clothes are kind of casual.”
As if I could have missed all of the four emails which had stressed this point in the past week. My tired brain stuttered over forming an answer. This was not the conversation I expected. I wanted an answer that conveyed, yes I had read all the emails, yes I’d understood them, yes I’d planned to help Gleek look her gorgeous best for the concert, but then the day had turned out so differently that I was just glad we’d made it at all. Because making it to the concert was important. I loved that Gleek was singing and finding a focus for her energies. I also wanted to give a somewhat biting response because I could hear between the words to the message Gleek doesn’t match the other students. She doesn’t fit with my vision of how this concert would be perfect.

The words which came out of my mouth were “I tried to get her to dress up, but she argued.” It was a half truth. Gleek had come downstairs wearing a swingy skirt and her choir t-shirt along with a pretty purple scarf. She’d obviously chosen the clothes with care, I’d mentioned Sunday dress, but my brain was full of a dozen other things, so I hadn’t argued. I’d just hustled us out the door.

“Well there is plenty of time. So if you wanted to run home and get something…”

I nodded and said “I’ll go ask her what she wants to do” as I walked away.

The thing is that we attend our current school, not because we live in the neighborhood, but because my kids tested into the program. Running home would be a twenty minute round trip. Yes there was time. No I didn’t want to do it. I was tired. I’d spent the afternoon helping Kiki nurse an injury and evaluating whether the injury was severe enough to merit an ER visit. The following doctor’s appointment had been reassuring, but we’d returned to immediately launch into a dinner scramble and helping Gleek get ready for the concert. In the middle of all of that there was an issue with damaged calendars that Howard needed fixed so he could sketch and then there was an email telling me that my childhood best friend’s mother–my surrogate mother–was hospitalized after multiple strokes. I’d also been short on sleep every night for a week. I wasn’t just tired, I was weary in my mind and heart.

I found Gleek. She wanted me to go fetch fancier clothes because she felt out of place among the fancier dresses of the others. I’d been prepared to face down the director and stand up for my daughter’s choir t-shirt, but for my daughter I would drive home. On the way to the car I berated myself for not grabbing a dress on the way out the door. It would have been easy. Then I would not have to give up the excellent parking space which had been the reward of our early arrival. Then I could sit in the gym and work on a critique for writer’s group which would begin at my house just after the concert was over. Instead I drove carefully through the dark, aware that my fatigue and frustration might impact my driving.

I couldn’t find the shirt Gleek wanted. Instead I brought back a Christmas red shirt which turned out to be a little too big.
“It’s okay.” Gleek said “I’ll just keep it pulled up.”

I went to sit in the gym. I had a good seat because I’d taken one page of the story I was critiquing, wrote Reserved on the back, and left it on the chair. During my twenty minute run, most of the seats had filled, but mine was still there. I looked up at the stage then focused on reading because I did not want to think about the last time Gleek performed on this stage. The stress and excitement of performing had triggered a panic attack. I’d spent half the show smiling at her, making “you’re okay” gestures, and pantomiming taking deep breaths. Gleek seemed to have forgotten that experience, but I had not. I worried that this concert would trigger the same response. I wondered if I was about to spend forty minutes trying to help my child manage anxiety from forty feet away. I’d intended to have a calm afternoon, a solid dinner, all carefully staged to reduce stress. Instead she’d skipped dinner, ran around in the gym before practice, and was wearing a shirt which made her feel self-conscious. There was a tap on my shoulder.
“Gleek looks lovely. Thank you.” said the choir director.
I just smiled at her and she moved on. I barely knew the woman. I barely knew anyone at the school. I felt bad about that sometimes, as if we were interlopers and freeloaders in their community. The solution would be for me to get involved, volunteer, work to chat and make connections with the other parents at the school. I haven’t had the emotional energy to spare. Not last year. Not this year. I watched the director and knew her for a good person. She cared so very much about choir, about teaching the kids, about making this concert be a good experience. I thought all these things, but mostly was glad that she didn’t stay to chat more. I didn’t have any chatting energy left.

The concert was lovely. Gleek sang with all the others and while she did fiddle with her shirt and fidget with her feet, she didn’t show any other outward signs of stress. We acquired Wendy’s on the way home and headed on into the rest of the evening. The next day brought a general thank you email, in which the choir director was gracious and praised everyone who participated in the concert. She also mentioned how she would be stepping down from her director position because her step-father was dying and she needed to focus on her family. I was not the only one that evening with a head full of more things than I could possibly express. The new knowledge did not erase my frustrations of the evening before, but did increase my ability to bestow the benefit of the doubt. The director was right. Gleek would have felt awkward in her t-shirt.

Some days are difficult and there are no villains to blame.

Diagnosis Again

“Link is a patient of mine, his diagnosis is Attention Deficit Hyperactivity Disorder…” The handwritten note continues with details of medication, but the words are blurred by the tears in my eyes. It is so small this piece of paper, handwritten on a prescription pad. I wipe away the tears with an angry swipe of my hand. Nothing the paper says is news. Link was diagnosed years ago and has taken medication ever since. The only reason I hold this paper is because Link’s current IEP team mentioned that his official diagnosis is not documented in their paperwork. They have a two-inch thick binder full of papers about Link –skill test results, IQ test results, language test results, nine years worth of specialized educational plans, psychological reports–but none of them include this diagnosis. I’m told that if I add this little paper to their stack, it may open up additional support options for Link. So I called the Doctor’s office and he mailed me the paper. It changes nothing. I can’t explain why seeing it written down should make everything feel more real. It just does.

Infants have incompletely formed brains. There are many things that they are incapable of comprehending until their brains develop further. The remainder of childhood is one long biological trade-off, alternating body growth and brain development in a careful dance to optimize the probability of survival. This means that children experience periodic bursts of new comprehension. Suddenly they see the world in new ways and have to re-evaluate everything based on their new comprehension of it. This is why a five-year-old who has never drawn on the walls before suddenly begins to treat the entire house as a huge canvas. The teenage years are hugely important brain development time. Teens are nearing adult comprehension and begin to look forward toward fending for themselves. They desperately need to have an identity and a goal. Link is fourteen, his childhood comprehension of himself is no longer adequate. He has outgrown many of the childhood tools he used to manage his cognitive differences, but has yet to acquire comparable adult tools. He was left with an awareness of being different and little vocabulary for explaining why. He struggled. His struggles drew the attention of myself, his teacher, Howard, and the school psychologist. It was time for a new round of testing. We needed to assess what changes brain development has made and then based on that information we needed to create a plan. We’re mid-testing now. I don’t know what the plan is going to look like except that a huge part of it is sitting down with Link, showing him the test results, and explaining to him what they mean. Link is old enough to be included in the planning. This is part of the process of turning his life over to him.

Link is not the only child for whom I have a prescription pad diagnosis. I have participated in counseling and management of issues for all of my four children, for children of neighbors and friends, for relatives, even for acquaintances. I’ve helped people with ADHD, Autism, Aspergers, Bipolar Disorder, Multiple Personality Disorder, PTSD, Psychotic episodes, Anxiety, and Depression. Psychology fascinates me and I study it everywhere. I’ve learned enough vocabulary that people ask me about my credentials. I have none, only experience. Yet I am not an expert by any means. And even those who are experts are regularly baffled by the intricacies of human minds and needs. So I study my son. I read the reports until my brain is tired. I gather a team of credentialed experts to help him. Or rather, they gather themselves because, once again, exactly the right people are in place to help with this process. The elementary school psychologist who sat me down all those years ago and told me I might want to consider ADHD is now working at the junior high school. Once again she is here to help Howard, Link, and I as we gather information and plan for what comes next.

Most of what comes next is exactly what we’ve already been doing; small adjustments in classrooms and at home. The necessary changes are so small that it is hard to believe that they are necessary. We make the changes so that Link can learn without floundering. This time one of the small necessary things is including Link in the process so that he will understand himself better. He will be informed and thus able to act upon information rather than stewing in fear and ignorance. I take the prescription paper and I put it on the stack of things to deliver to the school psychologist. Perhaps this declaration of diagnosis will help open a door which Link will need to walk through. My feelings about it are for me to work through without troubling Link.

Diagnosis

I wrote this post one week ago today. I was not ready to release it in the wilds of the internet quite yet. I needed time to think and to discuss with Gleek. She thinks I should post it so that it can help other parents who are going through similar things. So here it is:

I don’t want to be here. The knowledge washed across me like a wave when the doctor stepped out for a moment to request a copy of a document. The rational portions of my brain were in charge of this visit. I made the appointment. I filled out the paperwork. I pulled Gleek out of school. Then I listened to the doctor and spoke to the doctor. I asked all the smart questions. I weighed all the variables. I knew this course that I was on was the right one. I felt that rightness deep inside. The calmness and sureness was there, like an underground river deep in my soul. It was the river upon which my boat of logic floated. But I did not want the trip. Not at all.

The doctor and I are ten minutes into our conversation before I ask the question. I need to hear the words.
“So she definitely has ADHD?”
He answers yes and shows me the diagnostic forms which indicate it. Then he talks about tendencies, and possibilities, and why having ADHD can sometimes be a long term life advantage. He hands me piles of copied articles, pamphlets, and resources. I put them in my bag. Most of what he tells me I already know. The papers he has given me will be review, not new information. I’ve known the shape of Gleek’s challenges for a long time. This office visit contains no surprises. I knew what the diagnosis would be. I made this diagnosis for her myself years ago. But somehow, hearing it from a man who specializes in pediatric ADHD and mood disorders opens a small well of grief.
I knew what the answer would be when I asked the question, but I wanted to be wrong. I wanted to be told that she was fine.

I know that both the grief and the desire to be wrong are illogical, but they are there. I must acknowledge and process this grief so that it will not impact any decisions I must make. Why am I sad? The diagnosis changes nothing. Gleek is the same marvelous, strong, challenging person she was before the doctor said the words out loud. I am sad anyway; grieving because her challenges have been quantified; grieving because I am no longer able to pull a cloak of “maybe I’m worried about nothing” across the hard truths. She struggles, not all the time, not in every situation, but often enough that it hurts. The well of sadness has been filled up by all those thousands of small hurts seeping into it.

A diagnosis is a threshold. Sometimes what is on the other side is very much like what came before, other times the act of crossing over changes everything. Until one crosses, it is impossible to be certain which will be the result. Choosing to cross is difficult when things on this side are reasonably good. I have puttered around a long time making do with what I had. Then the calm river came to carry me over. I’ve done diagnosis before. I’ve had it be world changing. I took my non-verbal two and a half year old for developmental testing and embarked upon a decade of speech therapy, developmental research, and meetings with teachers. That same child in third grade was diagnosed with ADD/anxiety and I was transformed from a parent who would not medicate a child into one who does. I went to the doctor for an odd lump on my chin and ended up with multiple surgeries, radiation therapy, and daily thyroid medication. I know deep in my heart that diagnoses change things. All of the changes that have come to me via diagnosis have been ultimately good, but choosing change is still hard, even when I’m pretty sure what shape the change will take.

The doctor threw a ball to Gleek as he asked her questions. He put her through a variety of other little tests with a deftness which speaks long practice in working with high energy, high creativity children. She smiled and engaged with him happily, chattering about whatever lightning quick thought passed through her mind. She charmed both the doctor and the nurses. I was amused that the nurse commented on how active she is, apparently even in an office full of highly active children, she still stands out. I watched Gleek as she waltzed her way through the visit. I could see, though the staff could not, that she was nervous. She hoarded a little pile of candies, pictures, and prizes. The accumulation of small things soothes her. My heart was glad that everyone accepted her barefootedness and desire to touch everything as normal. No one scowled or scolded, even when she climbed atop the counter to perch.

We left the office with seven tootsie rolls, a sucker, a book mark, a pencil, a coloring page, a prescription, and my little well of sadness firmly capped for examination later. I did not take her back to school. Instead we went out for gelato. I just wanted to be with her exactly as she is. I don’t want her to change. She doesn’t want to change. Yet change is inevitable and much of it will be good.

The decision to medicate a child should never be undertaken lightly. I don’t take it lightly, not even after making this decision once before. Not even after seeing how medication removed Link’s chains and let him fly. They are so different these kids of mine and I can not apply blanket solutions. For all of Gleek’s years thus far, I felt strongly that medication was the wrong choice for her. Last Spring she shifted, I shifted, and I began to know that now is the time to see what medication will do. We need to know so we can make long-term decisions. I know the experiment will not do damage. It will not hurt her. Medication gave Link wings. Gleek already has wings, this time I’m hoping for a rudder. There is hope along with the trepidation.

The last step before filling the prescription was for Howard and I to sit down with Gleek and ask how she felt about medicine.
“I want to try.” she said. This is important. In order for medication to work, it must be her tool, not something I impose upon her. In the end my sadness and worries are irrelevant. I must not impose them upon Gleek nor burden her with them. Logic, her decision, and the calm river inside me say that tomorrow morning she will take medicine. So she will and I will observe. Then we will have more information than we have today, just as the diagnosis gave me more information than I had yesterday. This is a good thing.

Purchasing the medication was complicated by a trip to the Emergency Room for Patch, whose arm turned out not to be broken. Howard managed that little adventure, while I fetched the medication. Then I came home and lay on my bed in the solitude of my room. I had a small space to look deep into that well of sadness, to let some of it leak out my eyes. No grand explanations or reasons emerged. In the end I don’t suppose I need to explain it or rationalize it. As I move onward, as I heal, as Gleek grows, as I write, the well will empty out. It is much more empty now than it was this morning. Water drawn from a well of sadness can soothe other thirsty ground if I’m willing to leave the well open rather than capping and hiding it.

It has been a long day, a hard day, but not necessarily a bad one.