Friday, March 6, 2009

A New Normal

Recently we got home from school at a normal hour - no after school activities or therapy appointments. It happens once a week, and no matter how chaotic it might become, I relish it. This day, the boys had a snack and then went for a bike ride, with no disagreements about where they would ride to or even whether or not one or the other wanted to go on a ride. They came home, having stopped and gotten me the mail (without my asking them), and started in on their homework. There was no fussing about having to do the homework, no procrastinating, no fighting over which computer to use. Tommy worked intently on his spelling sentences, typing things like, "My Mom's vision has gotten a lot better since her cataract surgery." As recently as a year ago, I could not have imagined him thinking, let alone writing, this sentence, and the only word he asked my how to spell was "cataract". Will worked on describing what it would be like to travel through space in A Wrinkle in Time for his book club, without constant reminders to come back into focus. Tommy clipped his nails (typically a major sensory issue) without being asked.

You might be thinking "and then what?" But that's just it - nothing! Frankly, it was a bit eerie. I felt as if someone had slipped me a Valium. I would have no justification for complaining to my husband that night that I was tired. And then I thought, "is this what normal people feel like after school? Do they enjoy the euphoria that comes from these simple successes every day?" Then I realized, of course not. In fact, as I was discussing with another mom from their Yoga class, these neurologically, emotionally or learning disabled kids are the new normal. Therapists, educators, parents - we all need to come to accept these kids as what might now be defined as typical. In doing this, I think the infrastructure of our schools (and society) would be so much better equipped to handle them.

There is plenty of debate about why this is. Is it something chemical in our environment? Is it the media and our early exposure to it? Is it an evolutionary thing? No one can tell you for sure, but what I can relay is this: The heads of two private schools we have been at (who are both older women) will tell you that years ago you could walk into a classroom, and in a heartbeat pick out "the kid". "The kid" had ADHD or learning disabilities, more often than not "the kid" was a boy, and "the kid" was the one who was going to cause the teachers and administrators a boatload of trouble all year long. Today, you are challenged to walk into a classroom and pick out the typically developing children from the bunch. Both these women know that to exclude the sensory kids, the dyslexic kids, the AHDH kids, the bipolar kids, the anxiety-ridden kids, or the depressed kids would deplete their school populations enough that they would most likely not be able to fill their classrooms.

Though it can be very difficult for a parent to accept the disabilities and challenges his or her child may have, take solace in the idea that it is, in many of our minds, a new kind of normal. Know that you are in good company. Advocate your child's rightful position academically and socially. And cherish those rare days when things are eerily, and abnormally, calm!


Thursday, February 26, 2009

The Change Bandit

I often think that the old nursery rhyme "when he was good, he was very, very good and when he was bad, he was horrid," was written about a bipolar boy ages ago - long before they knew about diagnoses, meds, therapies and blogs. When Tommy does something bad, it doesn't surprise me, even though it happens less and less as he gets older, more mature and has more defenses under his belt. Yet, I do not know why I continue to be so surprised when he does something very very good. It stands to reason that the intensity of his good nature should balance, or match, the intensity of his bad nature. Still, the good things feel like Christmas morning each and every time, and I continue to be struck by just how sensitive and loving this boy, who has been capable of such anger and rage, can be.

And such was the case of the "Change Bandit". Each year UNM Children's Hospital does a radio-thon with a local station (100.3 The Peak) to raise funds for their annual appeal. As part of this fundraiser, the radio station asks people to become Change Bandits. If you sign up, they send you a money bag and you ask people to donate their spare change to the cause. I hadn't even realized Tommy was paying any attention to the radio, when he announced "I really want to do that!" So we logged into the station's website when we got home, and they sent him his Change Bandit kit. He got started right away, dumping out the various coin dishes around the house, looking under couch cushions, etc. I thought that might be the end of it, as he, along with other bipolar kids, have a tendency to get extremely excited about something and then drop it the next minute for something else. (This is a symptom of mania.)

But, much to the pleasure of his father and me, he persevered. He brought the change bag to school and made a presentation about his cause at community meeting. He stood outside the classroom door at drop-off and pick-up and asked parents for change. Then, much to my amazement, he got on his bike one day and rode to a neighborhood where the houses are quite close together and stopped at each and every one asking for money. Yet, I doubted he could really do it; I begged my husband to get in the car and go looking for him. I imagined him raging at a stranger who didn't give him any change, or losing his way back home. But, when he returned I found out that with each doorbell ring, he politely introduced himself and explained his mission. This, I thought, is something a boy his age, without issues, could well have trouble doing. And for every house that answered the door, he collected money.

Finally, the radio station sponsored a party for the Change Bandits at a local kids arcade/pizza buffet joint, and Tommy proudly turned his change bag in. As we listened to the radio this morning, he said "I helped those kids, that's good, right?" "Good? It's HUGE! You rock Tommy," I responded.

I found myself taking two lessons away from this Change Bandit experience. One, get your challenged kids involved and focused in a cause outside themselves. Help them see it through to the end. Everything is so much about them, in negative and positive ways, that working toward a third party goal seems quite therapeutic. And two, stop being so taken aback when Tommy shows the love, tenderness, generosity and independence that is very much a part of him. Expect and accept more of it.

For more information on donating to UNM Children's Hospital see: 100.3 The Peak - Donate Now

Tuesday, December 2, 2008

The Button

Imagine living a life as a 5th grader in which something so simple as a button can make all the difference in your day. Imagine, even further if you will, the irony of this when your life is extremely complicated - you battle adult illness like bipolar, take several medications, and struggle each day with impairments in your sensory system and social functioning. Your after-school activities include a wide range of therapies, not the soccer field. Imagine boiling it all down to something so simple as a button one Saturday morning.

There are fewer things simpler than a button. They can be solely functional, and have been found in societies as early as 2800 BC. Yet, they can be ornamental and intricately designed, making all the difference to the apparel they adorn. To many children with Sensory Integration Dysfunction, something as basic as tying shoes or buttoning shirts, especially those with fine motor issues, can seem impossible. Tommy and Will are no exceptions. Despite repeated attempts by my husband and me, they only learned to successfully tie shoes this fall with their OT. Will still struggles with buttoning his khakis and Tommy has always found any button a challenge. I failed to realized when I bought this one, seemingly innocent, shirt at Target, that it actually presented itself with the mother of all buttons. It seems a little too large for the button hole, it's a bit rough (as opposed to shiny and slick) and the button hole is horizontal, instead of the traditional vertical. Throw in the fact that its position near the top of the shirt adds an extra handicap, because of his eye tracking and focusing issues. It's the ultimate button challenge for a sensory kid.

Until now Tommy had never been able to make a skilled attempt at buttoning that button. I always had to do it for him, after several failed and frustrated tries. Not a huge deal, just an annoyance, and a reminder that there are things he cannot do that should be no brainers for kids his age. But, last Saturday night, while undressing for the bath, he grinned and pointed to that button and said, in a small but triumphant voice, "I buttoned that button today." Maybe it was just the glow of the evening lamp, but I swear his huge blue eyes twinkled at me.

I hugged him, congratulated him and made my hoorays. Instead of joining in my celebration though, he just went on about the business of getting himself in the bath. And he has never brought it up again. Then I realized that Tommy has been making enough positive progress lately, that this was a good thing to him, but it was still just a button. As for me, I need to see it as an intricate, decorative, complicated button - maybe even a fragile, antique button that needs to be fastened gently and with extra care. I need the powerful punch of his success to keep me going and reassure myself that things will turn out okay in the end. His ability to see it as a triumph, yet just another step to his becoming a fully functioning boy, is quite humbling. Though I am sure he views it as a plain old boring button each time he fastens it now, I still think he will feel lighter and freer inside each time he conquers it. And hopefully I will feel a little less excited, with my eye on the future, next time I see him do it.


Saturday, November 8, 2008

The Wish

We recently celebrated my birthday at a Japanese Steak House. On our way to the table, we crossed over a pond via a cliche, but sweet, little bridge to get to our table. As we crossed, Tommy and Will both made it very clear that they were going to toss a coin into the pond on our way out and make a wish.

Dinner was pleasant and a welcome relief from the week we had just had at school. Tommy had had a knock out year up until now (October), and the proverbial other shoe had just dropped. He was refusing to go into class in the morning, sometimes sitting outside the classroom for up to an hour. Once he got into the classroom he was oppositional and unproductive. He was depressed and sometimes did not make it into school at all. He was generally unengaged - nothing appealed to him but Pokémon. His teachers were having a hard time coping, and we were doing our best at home to honor his state of mind, but to support him and encourage him to move on. We adjusted one of his meds - turned up the Wellbutrin - under the guidance of his Psychiatrist.

We tried to remain positive; I tried to stave off depression. We took what actions we could, just to try to stay positive and in control. Control is a hard one when you see your child's world spinning quite out of control. And then you start to wonder, how much does he actually want to be in control? Is he enjoying what's happening? Of course not, but why doesn't he seem to be trying? Doesn't he know how important this all is to me and to us as a family? The burdens of sadness and hopelessness battle to take precedence over my common sense and my awareness that things will pass. Of course everything will be okay again. This is cyclical. "Calm down," I tell myself.

After we finished our meal and headed to the door, Tommy and Will did not forget to remind us they were in need of to coins to toss into the pond. They had wishes to make, and they weren't leaving here until they were made! They closed their eyes tight, flipped the coins up into the air, and as they plopped into the pond, wishes were made. After we got into the car, my husband asked, "What'd ya wish for?"

"I'm not telling or it won't come true - but, if you want to buy me a new video game, you might make my wishes come true," Will said with a grin.

None of this surprised us. New games, new bikes, a snow day (even though we live in the desert and it is only mid-October) - those were things little boys' wishes were made of. In a quiet voice, we heard Tommy say something from the back seat, "I wished that I would have a good day at school tomorrow, so Mom will be happy for her birthday."

My eyes welled with tears for so many reasons. How incredibly self-aware this child is. No matter how many times he shows me this, it astounds me. How could I have doubted him? Nintendo, Schwinn, and the weather gods had no place in his wishes, as they did in Will's. All he wanted was to be back in the game, and all he wanted was to make me happy. How elated I was! At the same time, though, my heart was incredibly broken. I grieved for the loss of a little boy's wishes. The ones filled with games and bikes and snow days. How painful it was to think he had lost sight of those precious and childlike wishes. But, how necessary it is in order for him to survive his illness.

He did, in fact, have a good day at school the next day, and, it was, in fact, a wonderful birthday present. As my gift to him in return, I try not to doubt him; I try to keep the faith that he wants it just as much, or more, than I do. I'll remember that the next time I blow the candles out on my birthday cake.


Saturday, October 11, 2008

Waiting for the Other Shoe to Drop

W. B. Yeats once said, "Being Irish, he had an abiding sense of tragedy which sustained him through temporary periods of joy." And though I grew up in a family that was only a small part Irish, it was still a family where nothing good was allowed to happen. If something good might happen, it must be some mistake. And not to worry, God would correct the momentary injustice, and that something good would most certainly turn to something bad. Just give it a day or two. Good fortunes were for other people. My parents were both young during the depression and WWII, and I think they were raised with this point of view. And then there was the issue of what I'd call Catholic guilt. You were expected to be in a constant state of repentance. As a young girl, I remember being dragged off to the confessional booth every Saturday (so we would all be free of sin for Mass the next day), and saying "but, you guys, I didn't do anything wrong this week." That never seemed to matter. I had to have done something. So I'd make up things about calling my brother a name or forgetting to unload the dishwasher while doing my chores, so I could say my Hail Marys and go home.

With the help of my WASP of a husband, who is happy to accept any good fortune, from a primo parking space right outside a very popular restaurant to profitable stock sale, I have worked hard in my adult life to allow good things into my world. I remember about 10 years ago when my husband and I were getting a particularly large tax refund, my mother exclaimed, "you can't be; things like that don't happen to people!" "You mean people like us," I said. While I resented her words and tried to enjoy that tax refund, I continue to be haunted by her rhetoric. People who struggle with children burdened with bipolar, or ADHD, or other disabilities get used to bad things happening to them. And when the going is good, it's so hard to relax and enjoy it.

Since Tommy started fifth grade this year, he has been on an incredible upswing. But not so up that he is manic. Just up enough to be an above average, well behaved, motivated boy who gets a lot of learning done during the day and stays out of trouble. His teachers are thrilled, and there is never an unexpected "phone call" from them. It is a joy to pick him up at the end of the day. He'll say amazing and unheard of things to me like, "I had no challenges today," and "I liked all the work I did today; nothing made me mad." My heart melts and I tear up a bit. I try to suck in the joy and think, "wow, is this how other moms feel when they pick up their kids?" Then, that stern voice invades my thoughts "don't get used to it," it reminds me.

I am certain there are other mothers of special needs kids out there who cannot help but agree with me. Why can't we allow ourselves to revel in this sense of relief and lack of stress? We all must work harder at emerging ourselves in these moments of triumph. Soak in it like a hot bubble bath at the end of a long day. Breath it into your body like the smell of a familiar comfort food simmering on the stove. And then, just be with it. You know it's going to go away soon. But if you (I) could just accept that and not fear it, then maybe it will not invade the happiness. Yes, we are allowed to feel happy. And not only are parents of challenged kids allowed to feel happy, we deserve it. Let the shoe drop when it drops, and don't let it stomp on what you have today.

I know this all sounds a little trite, so you might be thinking, how do you actually do this? For me it is writing. The simple act of writing the article and opening up about the topic allows me to do this; it gives me permission. Perhaps for you it will be the act of reading the article and taking it to heart? Maybe talking about your fears to a friend or a therapist? Maybe just admitting or realizing you have these fears. And maybe when your child has a good day, do something extra for yourself (a manicure, some chocolate) to remind you that it is a day to enjoy; that days can be treats. But just find your way to let the good days actually be good days, so you have the strength to deal with the next bad one.


Friday, August 22, 2008

The Phone Call

Every parent who has a child with emotional or behavioral special needs knows about "the phone call." So much so that it has almost become a cliché in these circles. Every day your child goes to school, you are panic stricken each time the phone rings, and you hold your breath, almost to the point of endangering yourself, until you can read the caller ID. If you get through the whole day without a phone call from the school, it's almost like Christmas. If you get through a whole week, it's like winning the lottery. If you see the school's name on the caller ID, you feel like you're going down with the titanic.

I, like many other parents in my situation, have received my share of phone calls. In fact, I will "one-up" my peers by saying that I have even gotten "the phone call" from the principal of a school my children do not even attend. Public school started a week earlier than our school did. Tommy and Will went down to the school, as they were used to doing all summer, to ride bikes and scooters in the empty parking lot. We had forgotten that the school was in session, and when the principle came out to tell them they could not ride there because pick-up would be starting soon, Tommy was non-responsive and ran off - and then proceeded to scooter across the parking lot. Will,
I was told was, was very cooperative and provided them with our phone number. Not one of Tommy's shining moments.

Occasionally we have worked things out over the phone, but most often I have run to the school as quickly as I can in hopes of doing as much damage control as possible. Last spring, in a session with our Behavior Therapist, Nathan, we talked about a recent phone call and how Tommy was unable to tell the teacher what was wrong. He was also unwilling to get on the school's phone and tell me what was going on. But, when I picked him up, he was able to talk to me when we got into the car. We started to brainstorm about ways that Tommy could get my attention when he was in school and save ourselves from an incident, and "the phone call." Naturally, it hit Nathan and I at the same time that Tommy needed a cell phone. He was in forth grade now, was a very responsible child with his belongings, and really had no friends to call, so there would be no abuse of the privilege.

It seemed like the perfect solution. I plugged in speed dials for myself, his dad and brothers. He knew that if something was really starting to go wrong, all he had to do was hold down the number two and he would get me. What an incredible sense of relief and control this has given him. We have avoided several incidents this way. Tommy takes great pride in having called me to work things out before he loses it. He also takes great pride in being trustworthy enough to have a phone. It has been a big boost to his self esteem.

I have also been able to call him if need be. One day I-40 was shut down and it took me two and half hours to get to the school (normally a 25 minute drive). I was able to call him several times and update him on my status, keeping him calm and in the loop. He also takes the phone on bike rides, etc. in case he gets hurt or lost and needs to contact us.

I would recommend getting any child with control issues a phone, if they are mature enough to handle the responsibility. There are, however, a few issues with this method. His teacher became concerned because he would speak to me, but still not be able to tell her what was going on, so she was not up to speed on how to proceed. We have to make sure that Tommy at least tells the teacher that he called me, so she can touch base with me to find out what happened. Furthermore, cell phones may not be allowed at your child's school. We got permission from the head of school, who thought it was a great idea. If you are in public school, you may need to get it included in an IEP.

There is always a feeling of triumph when you have taken something that has haunted you, like "the phone call," and turned it around to work to your advantage. And though it's nervous making to put control into the hands of a child who is often out of control, sometimes it's just what they need.


Wednesday, August 13, 2008

Listen Up!

When my mother was getting me ready to return to school in the fall, the biggest question was "what will I wear on the first day?" There was a lot of excitement around buying new school clothes and picking out just the right outfit. It seems to me, all of that nervous energy about making this new transition and embarking on the unknown was entirely redirected into my outfit. The nervousness at bedtime was transformed from a feeling of discomfort to a feeling of anticipation as long as that new, hip outfit was laid out neatly on the spare bed, ready to hop into in the morning.

When it comes to Tommy and his return to school each fall, clothes are the very least of my concerns. I'd give anything if a trip to Macy's would alleviate the anxiety associated with the beginning of each school year. Tommy does not go to camp in the summer. We have tried several, but he has always freaked out, and in one case, ran away off campus onto a busy street. After I got "the phone call," I rushed over to find him being held down by 2 security guards. By the time we could go through the adjustment period, camp would be over. And we have no camps for special needs kids here in NM. So, after being home with me all summer, the thought of school is both comforting and terrifying. He craves the structure and routine that school provides, but he revels in the security and lack of effort being at home with me affords.

Last year he had a particularly difficult time returning to his school. In Montessori, children are grouped in multi-aged classrooms (grades 1-3 and 4-6). Last fall he entered 4th grade, which meant he moved from the "Jr. El" to the "Sr. El". This meant he had a new teacher and a new classroom. Also, they combine all the kids in Sr. El into one, larger classroom (there are two classrooms in Jr. El). The larger room, the increased number of kids and the new teacher, with whom he had not yet developed a rapport, were too much for him. Tommy has never been able to play completely by the rules. We have always had to make modifications to his daily routine, that differ somewhat from the rest of the class, until we get just the right balance of demands so he can handle the stress of the day. In public school, I believe this is taken care of via an IEP, which is something we do not have in private school. Parents, teachers and therapists come to an agreement on their own and see if it works; it is much less formal, but no less important to your child's success.

The first road block we hit was "composition". Tommy was used to having a free choice work period in the morning, and composition is (or at least was) near the bottom of his list. His history with dysgraphia and language processing disabilities made it an unpopular choice. So, not only did everyone have to do the same thing at the same time, but it was something he was afraid of. Monthly research reports were now also required. Again, a scary thing for Tommy. Another thing that complicated the logistics of all of this was that the teacher that was supposed to lead the class had a recurrence of breast cancer, and another teacher was put in as lead, with really no notice to the parents. This made planning ahead over the summer very difficult.

Tommy quickly refused to go to school and became depressed. He seemed to unable to find fun or joy in anything. Through a series of questions at home and in therapy, he finally revealed it was the composition and monthly reports that were at the root of his non-compliance. We met with his teacher, got him excused from those assignments, and set goals to incorporate them into his work day as time went on. Also, Tommy does a language arts lab for tutoring, and he would certainly make progress in those areas through this vehicle. This got him into the classroom without a major scene and/or a phone call by lunch time.

Surprisingly to me, my husband and everyone else involved, this only helped for the better part of a week. Soon Tommy refused to go to school again. There was nothing I could do to get him to go into the classroom in the morning. We offered positive incentives, and nothing was appealing enough to get him to step foot in there. The only thing he was willing to do was join his former teacher, Miss Inga, and her class for their morning wake up PE exercises, which included some Yoga and Tai Chi. He did this once and was able to go into his new classroom and get through the day.

Seems like we found the answer, no? No. His new teacher refused to let him go to Miss Inga's PE. She said Tommy could not miss morning meeting. He was a member of the community and he had to be there for the morning circle. In morning meeting, they would go over their planners, hear about new science lessons for the week and discuss social issues that had come up. She was adamant about it, and so was his Behavior Therapist, Nathan. Nathan felt strongly that Tommy was terrified of the social structure and pressure of the morning meeting circle, and that he must overcome it. We were unsure, but felt that at some point Tommy needed to just do what was asked of him and maybe this was a good place to start.

Nathan and I came up with a disincentive plan. For every hour that he was supposed to be in school, we would work in the community. We would go to parks and pick up trash, gather things to donate to the poor, and work around the house. He scrubbed bathrooms, dusted furniture and vacuumed. We made sure no fun was had during school hours. Though the parks and empty lots around our house were glistening, he was still depressed, still refused to go to school and still cried himself to sleep at night. He just kept telling me that if only he could go to Inga's morning PE, and then go into his new class, he could do it. He even told me I had to find a new school for him. He demanded we go for a tour of the public school up the street. He didn't like the public school, but he still refused to go back to his Montessori school.

We came up with a plan to get to school extra early and do our own PE. People would come strolling in from the parking lot and see us doing Tai Chi moves on the playground. He enjoyed this to some extent, but when 8:15 came and it was time to go up to class, he still could not do it. And off we would go, to beautify another playground.

I was confused and distraught. I knew I could not home school him (I have tried that before, and I am really bad at it), and I was taking the advice of the teacher and the therapist seriously. What I now realize is that I was putting more faith in the professionals than I was in my own child, a mistake parents of mentally ill children can easily make. The professionals have the experience; they make a living passing judgments on these kinds of situations. And many children do not know what is best for them, let alone ones with disorders. But think about it: who's been getting all the therapy all these years? Who's been asked to hone and practice his skills? Who's on meds to stabilize his rational thinking? And who's had every mistake he's ever made read back to him with constructive feedback? Tommy, of course (
and perhaps your child). In our attempt to treat Tommy, we have created an incredibly self-aware child, who makes every honest attempt to self-regulate himself when he can. We have asked him to carry the burden of his disease, something most people do not have to do until adulthood. Something the majority of people never have to do. Yet, no one was listening to this child when he was telling us what he needed.

My husband finally said enough - Tommy is telling us what he needs (and isn't this something we have been trying to get him to do for years?) and no-one is paying attention! I told his teacher that "for whatever reason, Tommy is terrified to go into the classroom and sit in that morning circle. So terrified that he will pick up other people's trash all day instead, and that he will go look at other schools when this one has been his home for 3 years. They offered Tommy a spot in that class, which implies that they can serve and accommodate him. Right now that accommodation needs to include going to Inga's morning PE and missing morning meeting." I insisted that if she could not do that, it was an issue for the head of school and the board, because it involved our contract and issues of finance. The next day Tommy was back in school, getting that sense of security and safety he needed from his former teacher's wake-up morning PE. After PE he would go directly to class and have a productive day.

Nathan realized at once that this is what needed to be done and that he was not seeing the whole picture. In fact, Nathan is the one who helped us get to this point! It is with of his guidance that Tommy's self-awareness is so finely tuned. We did, however, at Nathan's suggestion, set a goal to check in with Tommy once a month as to whether or not he really still needed Inga's PE. For a couple of months he insisted he did, and we did not argue. Then, one day in January, as we were walking towards Inga's classroom, he looked at me and said "I think I should just go straight to class. I don't think I need Inga anymore." My eyes welled up with tears and we changed direction. I tried not to make a big deal of it, just say "okay Tommy, whatever you think you need." To this day he has still not be able to verbalize what terrified him, just that we was, in fact, terrified.

I think Nathan and the teacher learned a great lesson here - I know I did. Listen to your child. Take the fact that you have been teaching him to understand and verbalize his needs quite seriously. When your bipolar baby stops hitting people, threatening everyone he sees, throwing books at teacher's heads, braking valuables, spitting in other kid's hair, and hurling furniture, maybe it's because he knows how to use his words now. Respect him enough to listen - you've both earned it.


Thursday, July 31, 2008

Oh, The Shame

I recently got to know a woman who entertains in her pajamas. She said "I don't know you well, so I am dressed. But next time, don't be surprised to see me in pajamas and fuzzy slippers." Her house may not be clean, but she assured me she would always have wine. I, on the other hand, live in fear that someone will drop by unannounced and the beds will be unmade. Instead of the recurring nightmare people have about showing up naked in high school, I have dinner party nightmares. People show up at the door, no food is prepared, my family is not properly dressed, and worst of all, the house is trashed. How I admire my friend who can entertain in her pajamas.

Ever since I was a young girl, I kept a clean house. My mom went back to work when I was in middle school, and with two younger siblings, there was still a lot of house keeping to be done. I struggled to keep the house as neat as possible, to keep the laundry going and the grocery lists up-to-date. Why would a 12 year-old care? Because I lived in a house of dysfunction and shame. All said and told, my father was an alcoholic, my mother depressed, my sister eventually had problems with drugs and alcohol, and my brother had severe ADHD, which my mother was not treating medically. For some reason, to me, a messy house meant messy people. The more our house looked like the Cleavers, the more "normal" we would seem to the outside world. It was the only hope I had of controlling my out-of-control surroundings. Perhaps it was because when I was young, and my mother was present and attentive, our house was clean. When things got ugly, she only cleaned the house for special occasions or special guests. We were no longer worthy of that treatment. I figured, as long as our house was clean, no one would know our secrets. A kind of literal sweeping of things under the rug.

I carry this illusion of control with me today. Though I am not in the closet about any of our issues (I am writing about them on the web for the world to see), I cannot get out from under the shadow of shame. I am ridiculously uncomfortable unless my house is clean, and cannot even start doing anything else until my bed is made. If anything is out place when someone comes over, I apologize profusely. And almost every day I think about how much easier my life would be if I just got over it.

One winter's day in 1993, I tried to practice letting this go. We were having a big snow storm - a "nor'easter" as they call them in Boston. It had been a bad winter, and this meant there was already almost a foot of snow on the ground during these now blizzard-like conditions. Sam was a year and a half old, and a very busy and curious boy. His giftedness and hyperness made for a lot of mess during the day. He would empty everything out of the cabinets, organize them, sort them, stack them, and then destroy them. He did this with all his toys too. And he moved fast. Then, he would start taking pieces from the piles of destruction, organize them in some other way, and start lining the stairs with them. No walking surface was safe, unless I followed behind him, picking up the debris.

Today, I said to myself, is the perfect day to give myself a break and let the house go. No one can get in or out in this weather. It'll be just us, and I will let this all go until he goes to bed. I didn't even clean up the tray on his highchair right away. I was living dangerously! And though it made me a little uneasy, it was kind of nice to take a break - and I felt secure knowing no one could come over and "catch" me.

And then, the doorbell rang. What? Who could possibly be out in the storm? Was there some sort of emergency? For fear that someone might be in need of help, I sucked it up and answered the door. Before me stood a 10 year old girl, looking very much not in need of help.

"Are you okay?," I asked curiously.
"Would you like to buy some Girl Scout cookies?" she asked cheerfully.
"Excuse me?" I asked. "What did you say?"
"I'm selling Girl Scout cookies. Do you want to buy any?" she repeated.
"Why are you out in this weather? Why would anyone be out in this storm?" What kind of parents would allow their child to venture out on a day like this?, I thought.
"Exactly," she proclaimed, "I've got the leg up on the competition. No one else will be out selling today!"
"Well at least come in and get out of the cold," I held the door opened a bit wider.

She walked into my house and looked around at the debris Sam had created with an air of disgust. "Well," she huffed, "somebody's been making a mess." I looked into her judgmental eyes and wondered if she was real. Was this Type-A Girl Scout a figment of my imagination - some hallucination of my deep subconscious, sent to scold me and make me feel guilty and dysfunctional for letting my house go? I wanted to defend myself. Yell out, "but it was just one day, I swear. Only because of the snow storm. I'll never do it again. I promise." It was all I could do not to pinch her to find out if she was an illusion.

"So, can I put you down for a few boxes of Thin Mints?" she persisted.

Suddenly I became very annoyed with her. Who was she to judge my one day off? She was the crazy one, out selling cookies in a blizzard! So I turned her down.

"Hum," she snorted, as she turned on her heels and left. Even though I was proud of myself for getting rid of her, I was still uneasy with guilt for having exposed my dirty house to someone - especially someone who clearly thought me a bad parent and a bad housekeeper for doing so. I have always wished I had bought a box of cookies from her, just to see if she would come back and deliver them - to confirm that she was for real.

But what I know to be very real are the feelings of guilt and shame we often unknowingly pass on to our children. Currently, my children seem ashamed of nothing. Sometimes this is almost a little embarrassing - like the times Tommy is willing to tell complete strangers that he is bipolar. I think better that than having him run around making beds and wiping counters all day. In fact, if anything, what I have to worry about is that my kids will associate a clean house with crazy people.

I often think that Tommy's bipolar is a gift in this way. A challenge to break the cycle of shame; a challenge to share it with the world on a blog. Who knows what could happen next? Bravery is so much more powerful than shame. If you live near me and plan to stop by, beware! I may start to leave the beds unmade.


Thursday, July 17, 2008

Wannabe Soccer Mom

One Saturday morning I had a particularly annoying time with appointments. All three kids needed to see the Psychiatrist, including Sam whose ADHD meds needed adjusting, and the Primary couldn't get it right. The shrink didn't have back-to-back appointments, so I had to make separate trips. And he only sees patients on Mondays and Saturdays, and Monday after-school appointments are hard to get! So, three trips it was. A good friend of mine called me when I was in the car, coming back from one of the trips. I expressed my annoyance with my Saturday. "So what," he said, "at least you're not on a soccer field."

Excuse me? A soccer field? He had the gall to compare running back and forth to the shrink with a soccer game? It was not the back and forth I was necessarily complaining about (though, who needs it). It was the fact that all three of my children needed to go to the psychiatrist's office, and on a Saturday! Saturdays are supposed to be for team sports and birthday parties. Did he have any idea how much more I would rather be at a long, boring, dragged out, parents fighting, possibly hot or rainy soccer game? Soccer games are for "normal" people. And not being able to participate in them reminds me, in a painful way, that my kids have issues.

My kids' sensory defensiveness has always prevented them from playing team sports. Too many people in their body bubbles, too much commotion going on visually, too much noise, too much competition, too much anxiety. They do, however, get their share of skiing, hiking, swimming, gymnastics, yoga, trampoline and biking - anything without a lot of screaming and random, unexpected balls coming at you. We have provided them with activities and outlets (between the therapy appointments), yet I have always felt badly that, despite the minivan, I'm not a "real" soccer mom. Not just because soccer games are for "normal" people, but because I feel like my kids might be missing out on something. The sportsmanship, the camaraderie, the chance to make new friends.

I remember a friend of ours whose second child has severe Downs Syndrome. Her first born son and Sam were the best of friends in first grade. She kept saying to me "we gotta sign them up for soccer, you don't want them to get behind in those skills. Soccer seems to be the game. We gotta get them signed up." Their first day, Sam's sensory bells went off; he got into a "fight or flight mode," and misbehaved in order to avoid being kicked at by hoards of over-excited 6 year-olds. I remember her telling me that they would not be carpooling with us any more due to Sam's disinterest in the sport and his bad behavior. I was not, in her mind, soccer mom material. And with 10 years perspective I can guess that maybe her second son having a severe disability had something to do with what I thought, at the time, was a major overreaction to Sam's inability to engage.

On the other hand, I have a friend whose child has emotional disabilities, and he is a fabulous soccer player. She is pleased because it is a healthy outlet for him, and he is proud that he is gifted player. But, I suspect it doesn't ease her pain around his issues. When I get real, I know that it's not like soccer is some magic bullet that makes all of our struggles and secrets go away. Another friend, again with a special needs kid (her oldest has Tourette's and major Sensory Integration Dysfunction), was the one who set me straight. I asked her if her youngest was on the popular team that a lot of kids from our school play on. "Nope," she said in a casual and unconcerned voice, "my kids can't play team sports. Doesn't suit their constitution." Thank you, friend, for reminding me that "it is what it is," and that's just going to have to be okay, soccer or no soccer.


Monday, July 14, 2008

Meds, Meds & More Meds

Right after I met with Sam's Neuropsychologist about the results of his exam, I pulled into the pick-up line at Natick Montessori. Waiting for Tommy and Will to be brought to the car, the directress, Karen, who knew me well, took one look at me and said, "pull over!" I was clearly a mess. "What the heck is wrong?," she said in a concerned voice. Not only had Dr. Hentoff told me that Sam had ADHD, but he told me I should medicate him. Medicate him? The most I had ever given him was an antibiotic for an ear infection. Medicate my baby? Was he out of his mind? I was seriously distressed, and broke into inaudible sobs, as I tried to tell her what was wrong. I was so lucky she was the first person I saw - reasonable, knowledgeable and compassionate, she talked me through it, and I was able to calm down enough to pick up my children.

In the days that followed, I talked to the Head of Sam's school, our Pediatrician, and did some thorough research via the Internet. I talked to a few other parents whose children had ADHD. One friend whose child has a severe reading disability said to me, "if I could give him a pill in the morning to make this easier, you'd have to chain me down not to do it." I was so frightened it would change who he was, his identity. He's a genius, and his identity was pretty much wrapped up in that. What if it made him stupid or too tired to think? What if he wasn't Sam anymore? Yet, the disorder was causing trouble in school, and had always caused me much exhaustion at home.

In the end, my husband and I agreed to try giving him a psycho-stimulant drug in addition to some behavior mod & feedback methods. We started a med trial initiated by our Pediatrician, who gave him a small dose of Concerta. Nothing happened. The Dr. upped the dose a bit. Miraculous! He was like a new kid - in a good way. His impulse control was completely in check and his focus was significantly improved. And he was everything wonderful he had ever been before. This was in 4th grade; he is now going into 11th grade, and all we have had to do is adjust the dose as he grows.

Little did I know that Sam's med trial should have been entered the Guinness Book Of World Records as the easiest med trial ever. One drug, one dosage adjustment, and we were done! And with such fabulous results and no side effects. After the med trials we have suffered with Tommy and Will it is now unimaginable to me. It was luck, dumb luck.

Every parent of an emotionally challenged child has to, at some point, make the decision as to whether or not they want to medicate their child. There are a plethora of them available, and Dr.'s don't seem shy about prescribing them. There are also a plethora of opinions available to help you make you decision. And after having three kids on very different medications and having three very different med trials, here is my two cents.
  • your med trial could be long and difficult, and this is hard on everyone involved

  • make sure you have tried enough alternative treatments - don't turn to meds first

  • meds that worked one day may not the next, as your child grows or his metabolism changes

  • there can be side effects that outweigh the good

  • keep an ongoing table of medications, dosages, dates taken and reactions. Keep it updated. Save all med bottles or labels of meds your child has tried, but did not succeed on, for backup reference. The ones that are working will be easy to find in your medicine cabinet.

  • what's good for the goose is not always good for the gander - one kid in the family may have success with a drug and the other can react badly

  • some meds might not work alone, but work wonderfully as part of a "cocktail" - this requires a lot of testing and tweaking

  • people will judge you for giving your child medications (most of these people do not have children who need medication). You have to decide that the possibility of stabilizing your child is more important to you than their opinions are.

  • always try new meds over vacations, or at least, on weekends (or considering keeping him home from school) in case things blow up

  • When trying something new, ask your Dr. for free samples. In case it does not work, at least you have not spent (often your highest tier) co-pay on it.

  • make sure the school knows what meds your child is on

  • slow and steady wins the race - one Dr. we had poured too many meds on Tommy at once, and it was a disaster

  • children who are in the habit of taking their meds when they are young are much more likely to be med compliant adults
We came to the decision to treat Tommy with bipolar medications after he had had over a year of intense alternative therapies. He had had Occupational Therapy (OT) several times a week, as well as Behavior Therapy (BT). He had been through a Behavioral Ophthalmology program, had had his diet changed and supplements added. One day the OT, BT and I finally looked at each other and said "it's time to see a Psychiatrist and discuss medications." I am certain that I was more amendable to this because Sam's med trial had been so easy and so successful. Besides, it did not mean we gave up the other therapies; medications were a supplement to what we were already doing to ease his symptoms.

This is when I found out just how lucky we were with Sam. In comparison, Tommy's med trials have been nasty little hair balls. Bipolar with comorbidities is a completely different beast. He suffered some bad side effects before we found the right "cocktail." And this is a "cocktail" that requires constant monitoring and adjustment as he grows and changes developmentally. Not to mention it took almost 2 years to hit a homer. His gait and balance have been affected, his vision has gone blurry and sometimes doubles and he has become nauseous many times. Some meds that are supposed to help his bipolar symptoms by stabilizing his moods have made him more angry and violent. Some have made him tired and hungry, and he has gained weight (often the biggest complaint about bipolar anti-psychotic medications).

You, of course, have to trust you Doctor, and even if you think you trust him, medication trials are good way to find out what kind of doctor he really is. Our first psychiatrist was much too over zealous in trying new meds and increasing the dosages, causing Tommy a good deal of suffering because of bad side effects. He also did stupid things like prescribe him an antidepressant, without first stabilizing his mood cycles. Apparently, as we found out, this can cause a bipolar person to go into a very mixed state of euphoria and violence. This was the day I got the frantic phone call from the school reporting that Tommy was picking up metal folding chairs and hurling them at people while screaming obscenities. Yes, I left right away to go pick him up.

We soon found a much better Psychiatrist, who lowered Tommy's meds and got us started from a lower point from which to build. He always makes sure we take the time to slowly increase the dose and give each med a full chance to build up in the system before moving on. He is big into baby steps. He is also very talented and insightful about mixing meds, something our first Dr. was terrible at.

Tommy is on, or has tried, a total of 14 medications: Trileptal, Tegretol, Zonegran, Lamictal, Topamax, Depakote, Abilify, Celexa, Lithium, Rispredal, Zyprexa, Seroquel, Neurontin, and Wellbutrin. Phew. Many meds, many different doses and combinations, but we finally have a cocktail that works, at least for now. What worked? Well, we never saw the effects of Tegretol, as it gave him a rash. Lithium and Abilify do not work without using Trileptal as a base drug and Rispredal is like the cherry on top. Tommy had exaggerated symptoms of irritability, anger and violence on Zonegran, Lamictal, Topamax, Depakote, Zyprexa, and Seroquel. There was a lot of throwing up on Neurontin. And Celexa was the one he was on when he instigated the famed "hurling of the metal chairs" incident. But, if his mood cycles had been stabilized this may not have happened. And it is not to say that if we tried Depakote again, for example, that it would not work fabulously now, two years later. Meds can also take a dive when difficult cycles arise. For example, Tommy has a very hard time with seasonal changes (many bipolar people do), especially the arrival of spring. You can always be certain that at least one of his meds will need adjusting as the crocus start to bloom.

Will has been another story all together. We have tried medications to control his anxiety and his ADHD. Our former Dr. (the one we dumped) told us that because Concerta had worked so well for Sam, that we were almost sure to get a good reaction in Will. Wrong. In fact, we have tried five different ADHD meds for Will and none of them has worked. They either did nothing at all or made him angry and irritable. The psycho-stimulant drugs we have tried are Concerta, FocalinXR, Adderall and plain old Ritalin. In addition, he had a rare and serious behavioral side effect to one, Strattera, which is the only non-stimulant ADHD drug we have tried. Since then, we have given up on medicating him for ADHD and have focused on OT, BT, Cranial Sacral treatments, and we may try Acupuncture. He has been on two medications for anxiety - Zoloft and Paxil. He has been successful on Paxil. He may respond better to ADHD meds when he is older, who knows? The point is you can never shut to door, no matter how unpleasant your experiences have been when it comes to medicating a child.