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.


Wednesday, July 9, 2008

I'm Not Your Pet!

One evening, riding home in the car, Tommy and Will perched in the middle seats of the minivan, I heard Tommy pestering the hell out of Will. "Please Will, Will you need to play Monopoly with me when we get home. Please Will, you have to Will. You need to Will. Please Will. Will, I am making you. You are going to play Monopoly with me when we get home. I am going to be the banker. We will set up the board as soon as we get home. Will, you are going to play with me Will!"

Tommy finally took a breath, and Will screamed out, "Tommy, I'm not your pet! You can't just make me do everything you want all the time."

And though it is true that Will is certainly not Tommy's pet, he is, in fact, Tommy's only real friend. Imagine the pressure of being someone's only friend, and yet that friend has the power an older brother has over you - an older bipolar brother at that. You love him, you feel sorry for him, you even have fun with him, but you feel controlled by him. He can be threatening and explosive, and you know how upsetting that is to the entire rest of the family. You are constantly caught between the obligation you feel to appease him and the momentary feeling of independence you get when you are finally fed up enough to scream, "I'm not your pet!"

Of course, my heart bleeds for Tommy. He has not developed socially the way Will has. Kids don't outwardly dislike him, they just kind of ignore him. Will plays very age appropriately with his friends, and he is very popular. It is hard to allow him to have play dates here. Tommy tries to hone in, does not connect, often erupts and causes a scene. Will gets angry because Tommy is spoiling things, and Tommy gets angry because someone else has taken Will away from him.

This balancing act is pretty hard to maintain. There are only so many times you can request to have the play date "over at your house." And Will's interests are much more varied than Tommy's. Tommy obsesses on one activity for days and weeks, while Will is much more balanced. He does not want to play Pokemon for the 50th time that week. I am ashamed to say, I have resorting to bribing Will into playing with Tommy at times. "I'll give you a dollar for every game of Yu-Gi-Oh you play with him, I swear." How shameful is that? Anything to get a moment's peace.

He used to have friends when he was younger. His disease had not developed enough to set him apart at that point, and four year-olds don't usually notice the quirkiness of others - they are too focused on themselves. But as his friends matured and progressed socially, he did not. He has been enrolled in two peer social skills classes. We give him constant feedback verbally on how other's might interpret his actions and words. We talk about it in therapy all the time. But, what ever magic switch is supposed to turn on, has not yet.

Earlier this week, his Psychiatrist said to me, "you know, some people are fine being alone. They never become terribly social." That terrified me and comforted me at the same time. I'm sure Ted Kaczynski had no friends either. And I don't see a child who is full of joy and happiness. I'm always thinking "maybe next year, he will connect with someone in class, maybe soon someone appropriate will move into the neighborhood."

On the other hand, maybe the shrink is right, and I just need to have more patience? If he never has friends, maybe he will grow successfully into that role? Meanwhile, I need to keep helping Will say "no" and helping Tommy accept the answer. And the bribes - gotta stop the bribing!


Tuesday, July 8, 2008

Knowledge is Power - Telling Them They're Bipolar

Sam, currently 16, knew from the time he was diagnosed in fourth grade with ADHD, that he had it and what it meant. He understood why he had to take his pills every morning, and he saw the difference they made. Kids have been getting diagnosed with, and treated for, ADHD since I was a kid in the 60's (my brother has it). It seems like a disorder that has been de-stigmatized and none of us is terribly uncomfortable speaking of it. A good friend of mine whose son was diagnosed with Obsessive Compulsive Disorder (OCD) at the time, confided in me and made sure I swore not to share with anyone. I said I understood because Sam had a diagnosis as well, and I was aware that people often have confidentiality issues. She thought it was ridiculous to make the comparison - ADHD and OCD carried entirely different stigmas! And they do.

We had figured out Tommy and his younger brother Will had Sensory Integration Dysfunction (SID) when Tommy was in first grade and Will was in preschool. We had no trouble telling Tommy and Will that they had SID, and explaining what it meant. It did not seem to be a scary diagnosis. In fact, having "sensory issues" almost seems to be in vogue these days. We did not know at this point that Tommy was also Bipolar. The SID diagnosis helped Tommy to understand why things were so different for him and why he could not go to school at the time. It seemed like a reasonable explanation for what was going on, and several other kids in school suffered from the same thing.

We did not consider the Bipolar diagnosis until Tommy was in 2nd grade. And initially, we called it a mood disorder. Once we had concurred with his docs and therapists that Bipolar was the problem, we did not tell him. The label seemed much more serious and frightening to us than anything else we had dealt with. We feared that if he (or we) told people he had this, other parents would not want their children to play with him. In the shame, secrecy and confusion department, Bipolar was in a completely different league than the ADHD and SID diagnoses.

About three fourths of the way through third grade Tommy seemed mature enough to handle it. He had had a lot of therapies and was stable on meds. By this time we had become much more comfortable ourselves with the label Bipolar. We went to great pains to educate ourselves on the illness and were gifted with a much greater understanding of it. Our son was not, and should not, be an outcast - he simply had an illness that needed treatment. We took on the attitude, as cliché as it sounds, that if someone wanted to end a friendship over this, they were not worth having as friends.

The first time Tommy shared with someone that he was bipolar was a "nails on a black board" incident - I cringe when I think of it. He was invited to a friend's birthday party, a friend who he had not seen in a while, and a friend who was a girl. Her older brother was also celebrating his birthday. The parents convinced us to go out to dinner and relax - Tommy would be fine. Besides, we had our cell phones with us. I did not realize at the time I dropped him off that the dynamic would be all girls his age, all boys several years older. Tommy was odd man out.

The older boys started throwing water balloons and using squirt guns and would not listen to Tommy when he asked them to stop. He jolted into "fight or flight" mode from the sensory overload and the lack of control and expectations. He picked up rocks and started throwing them at the older boys. The Dad asked him to stop, and when he did not he grabbed him, dragged him into the house, locked the two of them in a bedroom and tried to calm him down. Tommy just kept screaming "I'm Bipolar, I'm Bipolar," over and over again. The Dad didn't much care what Tommy was; he just wanted him to stop throwing rocks. Getting that cell phone call at the restaurant was not exactly a "feel good moment."

But there have been true "feel good moments" now that he has this knowledge and has accepted it as part of his identity. Tommy goes to a reading lab at his school. Several other boys from his class go in at the same time. The reading specialist reported to me, with much pleasure that one day, that one of the boys just said aloud, "I'm dyslexic," another commented "so am I," another one replied "I have eye tracking problems," and Tommy said confidently, "I'm Bipolar." She told me "gee, I was kind of wishing I had a disorder to brag about!"

In fact, every other time since the rock throwing incident that Tommy has shared this information with people, it has been in a positive light. And, fortunately, it has always been received in that spirit. Every person who has shared those experiences with me has been almost as proud of him as I am. I am proud of everyone who accepts our differences. And the thing that makes me happiest is to see how Tommy feels empowered to be who he is. His acceptance of himself has been a more graceful process because of that knowledge. He is less angry and confused than he used to be. Part of this comes with meds and therapies, and part of this comes with accepting and owning his identity. He feels as if he has more control over something inside of him, something that most certainly gets out of control. He can name it, label it and own it. So, I think telling Tommy was the right thing to do; but that might just be because it worked out so well.


Monday, July 7, 2008

HELP! My Brother's Bipolar: A Sibling's Burden

One day during a typical argument between my bipolar son, Tommy, and his younger brother, Will, Will yelled out, in a spiteful tone, "well YOU'RE bipolar!" "Mommmm, Will called me Bipolarrrr," was Tommy's response. Just lovely, I thought. We have had a thousand conversations about this, discussed it in therapy, and had given ourselves the proverbial pat on the back for helping to de-stigmatize the disease in our children's minds. And after all, Will was a champ of a brother. He never once complained about going to school every day for three and half months when Tommy was on "leave". He played with, shared with and loved Tommy in a heartwarming way. But the tyranny was getting to be too much. I recognized that sick feeling I get when I decide I'm a bad parent - those words "what kind of a mother are you - who left you in charge of these rugrats anyway?" echoed in my brain. But, I sucked it up and did what I could.

We've had conversations about how "Bipolar" is not a bad word, just a disease. But I understand why it makes Will mad, because the illness effects Tommy's behavior. And that behavior effects Will. "But he was on a rampage Mom, a serious rampage." Well," I responded, "think of it as Tommy having the stomach flu. If he threw up on you, you would be annoyed and grossed out, but you would not tease him about it." "Yeah, well stomach flues go away," said Will dispiritedly. I knew at that moment he wanted to wish Tommy away, "disparate" him to a far away land, like some scene from Harry Potter.

There is no doubt the burdens these siblings have are unnaturally heavy and complex. I know my 3 other sons have felt resentment, shame, guilt, anger, hurt, helpless, sympathy, pride and confusion. How are they supposed to feel? I guess like us, but less empowered. I have felt these things as well. But I have the power to pick up the phone, to make an appointment with his shrink, to take him to behavior therapy, to chose to medicate him, to keep him out of school if he is on the edge, and to love him unconditionally.

When Tommy reached a certain age, I think he was almost 9, his level of self-awareness and reflection was far above normal. All the therapies he had been in for so long were paying off. We reinforced our conviction that he has nothing to be ashamed of, and that his illness is not his fault. We told him he was in charge of deciding who to tell, and who not to tell, that he was bipolar. It shouldn't matter, but if the situation called for it, he really should be comfortable sharing. He needed to be prepared though that some people may not be educated on the disease and may react negatively. We shared this information with his brothers and told them that it was Tommy's business, and if they wanted to tell someone they should ask Tommy first. Just like Tommy does not have the right to share Sam's grades with anyone else. Tommy seemed empowered by this decision, and his brothers seemed to understand the ground rules.

And then it happened. One afternoon, a few weeks later, we stayed a bit after school so the boys could play on the playground with some friends. Shortly after we started, Tommy ran up to me and and yelled, "Mom, Will told his best friend I am bipolar!" Will ran up behind him trying to intercept the tattle. I turned to Will ready to scold him, until I saw the desperate look on his face, and then he burst into tears, mumbling and gasping that he "didn't mean to, please don't be mad, please don't punish me." My heart bled from a thousand different places at that moment, and my my empathy went to Will. He had for one glorious moment held something over Tommy's head. For once in his life, Tommy was not in charge - Tommy was not calling the shots. Will had knowledge, and knowledge is power, and he used that power, until Tommy had tattled. And once I looked at him, he felt all the guilt, despair and self-hatred you get from betraying someone you love. I had no intention of punishing him; he was punishing himself just fine. I took this little heap into my arms and consoled him. I told him "it's okay, we all make mistakes," I knew he didn't mean to hurt Tommy.

Later that night, when he had calmed down, I talked to him, as we had many times before, about what it meant to be Tommy's brother. But this time I think it resonated a little more poignantly. I acknowledged how hard it is to be a brother, let alone to someone with a mental illness. I told him how proud we are of him and how grateful we are to have him. I try to remind Will and Sam of that as many times as I can remember to, without it sounding like an empty and manufactured compliment.

I hope it sinks into their souls, but they are only children. I am sure many of the negative feelings are still alive and well. Yet, each time something like this happens, we grow, move on, and lighten the burden a bit.


Feeling Like a Castaway: The Need to Build Community

Tommy started his current Montessori school as a "first year" in the Junior Elementary program (grades 1-3, in a mixed age classroom) in November of '04. Not long after he was in the classroom, maybe 6 weeks, he was asked to leave school for an indefinite amount of time because of his unacceptable behavior (see Getting the Diagnosis for more details). At this time we only knew we needed to get him support for his sensory issues; we did not know he was bipolar. But we knew something was clearly not right.

After I got the phone call mid-morning that December day I dreaded getting to school for fear of what state I would find him in, and who the casualties would be this time? Classmates, teachers, administrators - anyone could have been in his path. In those same moments I wanted time to stop, I could not drive the car fast enough to get there and take him away from everyone. The head of school sat me down and told me he had threatened to hit a boy over the head with a metal shovel, because the child tried to take it from him. She said it was a safety issue and he had to leave. But more importantly, because of several incidents in the last few weeks (including throwing books at a teacher's head), it was clear that Tommy was not a classic behavior problem and was asking for help. He could not come back to school until he had gotten that help and was stable. We were new in town, and I had no idea where to turn. I asked her for names, and she sheepishly gave me a short list of some psychologists, but said she could not personally vouch for any of them. (See Finding the Hard to Find Therapist for how this played out.) She also suggested looking at some other schools.

And off Tommy and I went, both of us with tears in our eyes. My husband out of town, all I had was a cell phone to cry into. I was alone and terrified, and my son no longer had a school to go to. But yet I had this uncomfortable connection to the school because my younger son, Will, was still there. I immediately concluded that I must be the only one at the school who did not have "normal" children. Tommy must have been the first ballistic child they had ever tried to deal with. Nothing was even vaguely said about other such incidents with other "not-normal" children. Not one therapist, clinic or resource was definitively pointed to. Who was going to help me help this child? And who could ever understand what I was going through?

Understandably, because of privacy concerns, schools are not willing to share names and information with you about other parents who have tackled similar problems. You only hear these things through the grapevine, and I did not have a grapevine at the time. No support group existed within the community, and if it did, they did not advertise themselves. God knows what people had heard or what they were saying about Tommy. No one approached me about it or offered any help. If he had broken his legs, or had been hospitalized with an appendicitis, no one would have been shy about asking me how he was or if they could bring by dinner, take Will for a playdate, etc. Many parents of Bipolar children (and children with a variety of special needs) live in secrecy while trying to make progress and help their children get stable. And even with Will still at the school, I felt completely shut off - a shunned member of Tommy's community. Like we were some sort of criminals.

Since I went to the school every day to drop off and pick up Will, I bravely went by Tommy's classroom on a regular basis and checked his parent mail box (which was a hanging file folder inside a file box). I tried to feel like I was still part of the classroom, because I knew in my heart that Tommy would be back. Yet the other parents and the teachers rarely spoke to me. I sensed some parents wanted to ask me where Tommy was but did not feel comfortable enough. He seemed to have something wrong with him that they considered unspeakable. One parent told me years later that she thought Tommy had just gone to another school. I really only got to speak to the teachers via the head of school, when I would schedule a progress meeting with them and Tommy's therapists.

One day, about a month and a half into his absence, I stopped by the classroom to pick up my parent mail. And something happened that stopped my heart and brought tears to my eyes. His parent folder was gone. They had removed it! What did this mean? Were they saying we were not worthy enough to know what was going on in the classroom? Not even worthy of a book club notice or a call for brownies for next Tuesday's bake sale? Or worse yet, much worse, were they trying to tell me they were never going to let Tommy back into the classroom? Was this their way of saying good bye forever? Hadn't they noticed that I was picking up the mail every day? I mean someone was emptying that folder. I felt more cut off and dejected than I had felt at any point during this whole terrible process. Yet, I felt like we somehow deserved it, and I was too embarrassed to ask exactly why they had removed it. Thinking about how I felt then still sends a wave a nausea through my stomach.

With three and a half years perspective, my guess is that they were just trying to save some paper. But people need to think about what kinds of messages small actions send to those in crisis. These actions definitely cause reactions in us. Conversely, a simple "are you guys hanging in there?" can lighten our day. We need support, and we need community. Things like Bipolar, Asperger's, Anxiety, Depression and OCD need not be naughty words. I would make the suggestion to anyone who is going through problems with a child, to tell your teachers, administrators and therapists that it is okay to give your name to other parents. Make sure to give your teachers and administrators all the names and numbers of Therapists and Doctors you have used, and your level of success with them. Start a support group, and make yourselves known.

Over the years I have dealt with this, I have finally connected with other parents who have special needs children (in the emotional and neurological sense), and it has made all the difference in the world. Those parents have built community by starting a support group and by speaking openly about their children's issues. Most all of the parents I have asked, have felt as alone and helpless, at one point, as I did that day they took the folder away. I am blessed to have finally come into a community.

Writer's Note: This post paints a dark picture of Tommy's removal from school. It was, in fact, a very dark time for me. Tommy was out of school this first year for a little over 3 months. I would like to note however that the school, we as a family, and our gifted therapists, have come a very long way in assimilating Tommy back into the school. Tommy has healed a great deal since then. I think the school has made tremendous progress in dealing with these types of challenging children and has tried to educate its teachers and make extraordinary accommodations. At this time, I would never send Tommy to any other school. My other postings more accurately describe how we got to the point we are at now.


Sunday, July 6, 2008

The Diagnosis, Part 3: Finally, We Got to Bipolar

In first grade, when Tommy was "suspended" from school, he received OT (Occupational Therapy) several times a week. (See The Diagnosis, Part II: SID and Feeling Like a Castaway: The Need to Build Community) At the time, we also started seeing a Behavior Therapist (BT), Nathan. I knew that sensory issues were not the only problem he was having. If you looked at the last year, he had moved across the country and had watched a woman he adored crumble to pieces. He had finally accepted his new school, and then it abandoned him by going bankrupt. Many children would have trouble coping with that. However, Tommy's classmates and brothers were having a much easier time letting go.

He would talk to us about getting a million dollars and reopening the school, and paying for his teacher's move back from Florida. He would come up with elaborate financial plans and draw designs for a new campus. (This might be a good time to mention that Tommy is very gifted in math). Nathan pretty quickly diagnosed him with an Adjustment Disorder, which lasts about 3-6 months. I agreed with diagnosis, and still do. However, we began to wonder why Tommy's behavior was still so severe well after 6 months. His sensory issues were improving, but again, not at the rate you would expect given how much OT he was getting.

In addition, we had a handful of other testing done. He had had a Neuropsych exam and testing, which revealed very little. She noticed he had an eye tracking problem and dysgraphia (like dyslexia, but with handwriting). Both of which are really OT problems. We saw a Behavioral Ophthalmologist to work in conjunction with the our OT, Becky to help his eye tracking issues. We also did something called Auditory Integration Training to help his overloads. Becky said that she had never seen a child, who was not Autistic, with such severe auditory overloads. His eye tracking was improving and his auditory overloads became noticeably less severe. Nathan was also working on Tommy's behavioral reactions to things that were not effecting him so severely anymore. Since he had learned how to react in negative ways to these stimuli, we feared he would continue to act negatively even if the stimuli were not so troublesome to him.

Four months later, in March, he was able to return to school part time. He was often able to have successful part time days, but more often than I would have liked, I got "the phone call." He was still raging and disturbing the other children, and he would only chose math work to do; no writing, language arts or social studies. He refused to go to Spanish, Art, and sometimes Music. He got very upset if he was not eating lunch with the same people every day, and transitions were still dreaded by both the teachers and myself.

As that summer progressed, Becky, Nathan and our family continued to work with Tommy in BT, OT and Behavioral Ophthalmology. We did all of these therapies at home, as well as in appointments with the therapists. We also changed his diet to include more protein and less carbs, especially sugar. I had a hair analysis test done on him to see if he was deficient in any nutrients. They recommended calcium, magnesium, zinc and fish oil. I also had complete allergy testing done, which revealed things I already knew, like certain kinds of pollens and cats. This felt like a 24/7 effort on many people's parts, especially mine. Yet, mid-summer Becky, Nathan and I looked at each other and asked, "Why are we still afraid to send this child back to school in the fall?"

It was the rages and rapid mood swings that most concerned us, along with his complete inflexibility and almost OCD like phobias over things he had decided were no good for him. Things like the kinds of foods he ate, where and when he expected to be somewhere, the tactile fears about creams, lotions, the wrong socks, etc. all still haunted him (and us). He could go into a rage so quickly that even a therapist as trained and astute as Becky would be taken off guard when suddenly Tommy would take the stretchy therapy band they were working with, wrap it around her neck and scream that he was going to strangle her and blow up the clinic if she changed her mind about getting to use the trampoline next. He would get so violent and angry at home, that I would have to lock him out on the front porch for fear he would hurt his younger brother. He would never run away, but always pounded forcefully on the door, screaming to let him back in. Finally, he would run out of steam, and I knew it was safe to bring him back into the house.

His (what we now know as mania) was also not being addressed by the therapies he was getting. His speech was rapid, interrupting him would cause great irritability and he became hyper-focused on particular and specific activities. All kids have favorites, but his were over the top - like obsessions.

We (my husband and our therapists) decided to take Tommy to a Psychiatrist for an evaluation. Becky and Nathan came with us so the Dr. could get the perspective from all of us and understand what kind of work and therapy Tommy had been doing. We met first alone with him, and then he met Tommy at the next session. He diagnosed Tommy with a mood disorder and put him on a mood stabilizing drug, Tegretol. We have since had many drug trials - good and bad. The question of whether or not to medicate your child is such a hot topic, and we have had so many experiences with it, that I will devote another posing to it.

As time progressed, Nathan began to take more seminars on childhood mental illness and brain research. He also did a lot more reading and research on the subjects. He shared a lot of this information with me. One day while we were doing play therapy at the park, I was reading about the symptoms of childhood bipolar. It hit me like a cast iron frying pan over the head. "Nathan," I pulled him aside, "this is SOOO Tommy!" It didn't freak me out at all. It was relief. There was a name for this behavior! Nathan had been thinking the same thing, but was counting, I think, on me to figure it out in short order. He was a little nervous, "Are you OK with this? Is this scaring you?" "NO," I cried, "he's still the exact same person he was five minutes ago, before this occurred to me. It doesn't change who he is, just how we might treat him. This could lead us down all sorts of paths we haven't explored before." So there it was - my child was Bipolar and I knew it. (We soon confirmed this with the Psychiatrist.) It was not shocking and terrifying. I just felt like we had taken one more leap, a rather large one this time, through the journey we were on with him. Though my feelings about it, and my level of acceptance with it, change all the time, I can remember feeling a great sense of relief in the park that afternoon.


The Diagnosis, Part 2: Sensory Integration Dysfunction

When I read the recent article in Newsweek Magazine on childhood bipolar, the thing that I kept saying to myself is "This kid has SID in spades!" SID stands for Sensory Integration Dysfunction. They say "He was pulling his clothes like he wanted to get out of his skin," he covers his ears at even normal volume sounds and he was unable to have his bare feet touch the grass as a baby. Maybe they know Max has it, and are dealing with it, but the article never mentions it. They mention OCD, ADHD and ODD, but never SID.

Every child I have come to know who has neurological issues, also has SID. And Tommy is no exception. In fact, this was his first "real" diagnosis (besides reflux). Upon reflection, I can see that he showed symptoms of it early on. One day when he was a few months old something unusual happened. Tommy's room was a stars and moon theme, and I had one navy blue sheet that was at the bottom of my stack in the linen closet. I had always had a white sheet in his crib, but he had gone through the whole pile with reflux spit ups that day, and I was down to my last sheet. When I laid him down in his crib, he screamed bloody murder. He was absolutely terrified. I kept picking him up, calming him down, and then putting him in the crib again - again he would scream in absolute terror. There did not seem to be anything obviously wrong with him, and it finally occurred to me (call it mother's intuition) that it was the sheet. I got a white one out of the laundry and changed it; he was fine when I put him back down.

Even before he was a toddler, he loved the vacuum. I would have to leave it out and plugged in at all times, for a couple of years, so he could turn it on and off. He loved the hum, rhythm and vibration it provided as input to his sensory system. One day at a friend's house, her baby dropped his pacifier. I noticed she picked up a different type of pacifier and put it in this mouth. I was shocked. Then I noticed she had more than one type of bottle. "How can you do that?" I asked in amazement. "Do what?," she was confused. "Change binkies and bottles like that? He will take both?" "Yeah, he's flexible," she said. "Hum, not a word I would use to describe Tommy."

When he was about a year old, I tried to make plaster hand prints of the kid's hands for Father's Day. When I put Tommy's hand in the plaster, he ran around the house screaming like a mad man, wildly trying to shake the plaster off his hand. It was like I had put his hand in fresh dog poop. And the worst mistake I ever made was letting Sam take a bath with Tommy after he had gotten some bath foam at the drugstore. Again, Tommy was terrorized, and this time he was trapped in the tub! I grabbed him and got him out as soon as possible, but it was a while before he was calmed down.

We figured Tommy was just oversensitive to certain stimuli and that he would grow out of it. However, as he moved into preschool, symptoms persisted and evolved. He had severe difficulties with drops offs and other transitions, like coming in from the playground. He used to bury his gloves in the sand, thinking they would let him stay out there until he found them again. Auditory overloads seemed to be bothering him now also. Of course these difficulties caused bad behaviors. At a particularly dicey drop off, he got into what I now know to be a "fight or flight" situation, and when his teacher held him back, he bit her very hard.

We talked to the teachers about possible causes, perhaps he had sensory issues and needed to see an OT (Occupational Therapist). Perhaps he needed a neuropsych exam and other evaluations. But, he was too young for most of these evaluations. And we wondered still if he would mature out of these things; lots of kids in preschool can't come in from the playground or sit comfortably in circle. As we investigated the possibility of an OT eval, we found out our insurance did not cover the cost. We lived in Wellesley, MA at the time, and so I contacted the school department. Wellesley, and many schools in Massachusetts, has excellent special ed and early intervention programs due to a state mandate, Chapter 766.

But, summer was about to start, and they did not do testing or give services in the summer, unless it is already in an existing IEP to do so. Meanwhile, over the summer things changed for us, and we decided to move to New Mexico. We moved to New Mexico at the end of September that year, and the boys started a new school.

My luck, the first day of school they were making paper mâché hot air balloons. Tommy touched the goopy paper mâché and freaked out. I got called in for a conference our very first day of school. Transitions continued to be difficult, tactile defensiveness had grown into an unwillingness to wear many types of cloths, especially those with tags, only certain kinds of socks, a phobia about any type of cream, lotion, sunscreen or ChapStick. He also had publicly embarrassing blow ups when we would try to get his hair cut and severe meltdowns when we would try to clip his nails. Only one type of shampoo would do and he refused to use toothpaste when he brushed his teeth. In addition, he craved oral feedback and chewed on anything he could - cups, shirts, toothbrushes, straws, etc. He chewed a ridiculous amount of gum. And his auditory overloads were getting worse. For instance, he would start to hum or whistle loudly whenever a truck passed the car and he would cover his ears and scream when things got loud at a birthday party. It even showed up in his food choices. Only certain textures would do, and he wanted all his cooked food ridiculously hot. He would decide he liked a certain food, but then would only eat it if I prepared it.

Shortly after we moved here, I called KidPower, the OT clinic highly recommended by people I spoke to at the school. There is, unfortunately, a serous shortage of OT's in NM. The waiting list for the eval was 6 months or more. Then, after you got the eval, you had to get on another waiting list to be assigned to a therapist. We got on a waiting list and waited, and waited.

In the meantime, the school my children were attending went out of business. Unfortunately, Tommy had developed an unusually strong attachment to one of his teachers, who was also the co-founder of the school. When the school went under, she had a nervous breakdown, the beginning of which she did in front of the kids. She ended up moving to Florida, and never said goodbye.

This is when we transferred to our current Montessori school. This is the school he was "suspended" from a few weeks after starting. (See Feeling Like a Castaway: The Need to Build Community) He could not returned to school without a diagnosis and proof of improved behavior. I called KidPower and asked if my child not being able to go to school was considered an emergency (I certainly considered it an emergency), and could he be moved to the top of the waiting list? They got him in pretty quickly, and it was no surprise that he was diagnosed with severe SID. We were able to start working with a fabulous therapist right away, and Tommy went to OT as much as possible, sometimes a couple of times a week.

Tommy still goes to OT today. SID is still a significant part of his life. SID and bipolar are a powerful combination of illnesses. They play off each other like two evil villains in superhero cartoon. Unlike a cartoon though, these bad guys usually win over the hero your child is capable of being. That is, until you treat them.

For more specific information on treatments see the series of postings "All the Therapies We Have Tried".


The Diagnosis, Part 1: Reflux Came First

Tommy had issues from the day he was born. I had had an extremely difficult pregnancy, most of which was spent on bed rest, and he was born via emergency c-section as my kidneys and liver were starting to fail. Immediately following the surgery, my body was more exhausted than it had ever been. That night, I was thankful for my morphine drip and the nursery down the hall. I truly needed an uninterrupted, drug induced sleep. At about 3am I woke up to the sound of a screaming baby. I mumbled at my husband, "is there a baby in here?" "Well," he said, "I have been down visiting him in the nursery. Every time he eats he is so uncomfortable and fussy, and he throws up a lot. I just couldn't leave him down there."

Well, of course he couldn't, and Tommy stayed with us for the rest of our time in the hospital. And so began our life with reflux. Sam had a lot of stomach problems when he was a baby, but he never threw up. He was just uncomfortable and clearly had trouble digesting. This lasted less than a year. Tommy's reflux, on the other hand, was severe as a baby, and noticeably bothered him until he was about 4 years old. He still has episodes today. He threw up so much that when friends who wanted to hold him came over, we would cover them in a large bath towel, so that they would not leave covered in unacceptably smelling, partially digested formula. No matter what I ate, my breast milk did not agree with him, and soy formulas did not work either. He could keep down about half of what he ate with the super hypo allergenic, predigested formulas Nutramigen and Alimentum. We used to keep a separate sponge at the kitchen sink, just for cleaning up "baby spew," as we called it. I would always make sure it was blue, so if someone went to clean up the mess with the real kitchen sponge, I could yell "blue for spew." He always wore a bib, and the bib was constantly soaked. One day I called the GI specialist in tears, "I've gone through 32 bibs, and it's only 2:00 in the afternoon!"

He does not drink milk even today, and this has helped some. However, I have had him tested for many food allergies and for Celiac, and all have come back negative.

He was not what they call a "happy spitter". I was told by our Pediatrician and our Pediatric GI specialist that such spitters exist. He was extremely fussy and uncomfortable. He had an upper GI, a lower GI and a pH probe done. All indicated the same thing, severe reflux. He slept on his stomach with the top of his crib mattress propped upwards by folded towels, so he would not choke. Many times I would find him lying in a puddle of puke. I would run and fill up my basin with warm water and Johnson's Baby Wash and gently give him a sponge bath. Then I would have to change his clothes and bibs, and the waterproof pads I would lay over his sheets.

People always used to say things to me like, "Oh my baby had that; 3 months and it was gone," or "Don't worry, babies grow out of that in 9 months, maximum." None of these things held true for Tommy. I would find myself getting pissed at these people, the Dr.'s and the universe, when he was still erupting like a diet coke and Mentos experiment at 12 months. I resented the fact that I could not settle down with and cuddle my baby without being soaked in a lake of vile smelling, curdled spew. If I had known then what was in store for us, I would not have wasted the energy getting so angry over reflux.

We tried several medications: Zantac, Pepcid, Propulsid and Prilosec. His life would have been a living hell without these medications, and his risk of esophageal cancer as an adult would be much higher. He finally stopped throwing up 30-40 times a day when he was about a year old. And thank goodness, because once he started on solids, those baby spews got grosser and grosser. But he still needs Prilosec today or he has uncomfortable stomach episodes.

No therapist or doctor I have taken him to has ever been surprised that he had (still has) reflux. They all tell me that it is common in children who suffer from mental or neurological illnesses. I have read that 50-70% of autistic children suffer from reflux. The relationship between reflux and mental and neurological disorders is not something I have researched much. But, it might well be a topic worth exploring. However, in the scheme of things to come, reflux was the least of our problems.

When Will was born, unfortunately, the same thing happened all over again. At least we had the bibs on hand! Though the baby story is almost identical, Will grew out of his reflux at an earlier age and is not bothered by it today. At least I have been able to put the bibs away for good!


Instilling Fear

Probably the most valuable lesson I have learned when it comes to my kids is that you should never let someone instill fear in you that your child is not capable of something he is. Just because he is Bipolar, has emotional delays or ADHD does not mean that he is not much more capable than you, and others, think he is. I think this happens all the time, with therapists, teachers and parents. The best example I have of this is a school the boys attended when we first came to Albuquerque.

All my children had been schooled in Montessori back east, and Albuquerque Country Day School (ACDS) was the first non-Montessori school we had ever seriously considered for our boys. There was only one Montessori school within reasonable driving distance from our new home (though there were others further away), and I did not care for the Directress. ACDS presented itself as a school for all children. They emphasized that they could educate a child who was either years ahead or behind in various subjects, and that children worked at their own pace. They also claimed that they could accommodate children with many different types of learning styles and learning issues (such as ADHD). The school and the classrooms were very small. At the time I was mostly concerned about Sam. He was in 6th grade and I was very worried about his emotional and social development, especially since we had just moved here. I also wanted to make sure he could work at his own pace, since he was so far ahead in most subjects. (Being at a Montessori school for the whole of his elementary years allowed him to do that.) There are three large Prep schools in town for grades 6-12, but I was afraid they were too big and overwhelming for Sam. He needed a small, personal and nurturing environment. The head of school convinced me that ACDS could provide all that.

As a bonus, the school was grades preschool to 12th. Tommy and Will could go there as well. Given they were used to working at their own pace, and that Tommy seemed to be having some transition and sensory issues, it seemed like a catch all. As we continued at the school, Sam seemed to be well adjusted, but he had no friends, and many of his classes were "beneath" him. He was taking English with the 7th graders, yet they were working on grammar that he had done two years earlier. The only thing he seemed to be up to speed on was math, and that was because he was teaching himself. It was basically an independent study in Geometry.

Tommy was the one having most of the issues. He was in kindergarten. His inability to transition was causing frequent melt downs, and his teacher did not seem to have a lot of tolerance for it. She also disagreed with me that he had sensory issues and believed it was all behavioral. She discouraged me from getting an OT eval, but I got on the waiting list for the well known OT clinic here called KidPower. Tommy was also frustrated with the low level of reading and writing that they were giving him, and the even lower level of math that they provided.

Will was far ahead of his classmates in the preschool room, but he was proving himself to be quite social, and he really invested his time in developing those skills. I thought about moving both Tommy and Will to one of the Montessori schools that was a far commute. I was still too afraid to think of Sam in a larger environment. I felt like he would be eaten alive at one of the large Prep schools, but I was increasingly concerned about his academics. He could not keep teaching himself everything. The Head of School kept promising me that Sam would be more challenged; that they would develop a better curriculum for him. One of the parents was going to come in and teach him Java, and he could join an English class with even older students. Sam was not socially adapt enough for a larger environment, he convinced me.

The Head of School's wife ran the lower school and took a special liking to Tommy. Though we did not enjoy his kindergarten teacher there, he would have the Head's wife next year in 1st grade. She adored him. She said she understood him and was completely sympathetic to all his issues. She would protect him and lead us through the process to figure out what was going on with him. Only she would have the patience and nurturing skills to put up with everything that happened in between. The school would tolerate and accommodate whatever Sam and Tommy needed.

Well, that school never made good on any of those promises. There were many challenged and quirky children at this school. The school became enablers of difficult children. But they never really ended up helping any of these kids. Yet, they spent a great deal of energy instilling fear in the parents of these children. They worked very hard at making us believe that they were the only ones in town who would put up with, and help, our kids. They made us believe our children were capable of much less than they are!

And I am ashamed to say that I fell for it hook, line and sinker. Four years later, I still spend time beating myself up about this. How could I have been so foolish? I knew better than that. We have always been extremely involved in our children's education - we were on the Board of Directors and many committees at both Sam's and Tommy & Will's schools back east. I dedicated myself full time to my children and took pride in the attention I spent on them. Was it the stress of the move? Was it the confusion of living some place new? Was it the new and unfamiliar fear of what might be going on with Tommy? Or the old fears I had about Sam being socially delayed and perhaps having Asperger's? How could I have not seen the dysfunction in this relationship?

Well, it turns out these people were terrible at managing money as well, and the school went out of business in less than a year after we started there. There was a subset of parents who left the school because the promises that were being made to them were not being kept (causing some of the financial difficulties). But, there was a subset of parents who fought to try to keep the school running. They tried to raise money, they tried to rework classrooms, reduce space, let go of some teachers, etc. Why? Not because that school was worth saving - it truly was not. Because of fear. The Head and his wife had done such a good job of making people believe their children had no chance of surviving outside those walls that people were willing to do whatever it took to keep the place opened.

How could I have doubted Sam? He was actually a strong individual who respected and liked who he was. We made sure of that when we had sent him to his high quality Montessori school back east. They, on the other hand, spent a great deal of energy instilling a wonderful sense of self in their students. How could I think that they were the only people in Albuquerque who could help Tommy? I am still flabbergasted with the dysfunction and co-dependency of it all!

As it turned out, all these quirky kids had to go to some other school. And you know what, most of them were just fine. They stepped up to the plate and did well at other private and public schools. Sam went, and still goes, to Sandia Prep, one of the three large prep schools in town. He has been enormously successful there; I continue to be dismayed with myself for not starting him there in the first place. They have met his academic challenges, and he now has a boat load of good friends. How could he have become friends with anyone at ACDS? They were all too dysfunctional to make friends. We needed to provide him with an environment of "normalcy". And then, as most other kids did, he did what he was capable of and started living a more mainstream life, while keeping, and being proud of, his unique sense of self.

Tommy was one of the ones who did not do well at first (see Feeling Like a Castaway: The Need to Build Community). He fell apart as the school fell apart. We might have predicted that if we had known he was Bipolar. Sometimes I wonder if that school had stayed in business, would we ever have found out that Tommy is Bipolar? But, eventually Tommy stood back up on his own two feet and moved on. This is mostly because of an OT and a Behavior Therapist (and eventually his parents) who believed that Tommy was capable of doing more than many other people thought he could.

Sam recently asked me as we drove by what was once the school, in a tone that was curious, yet dismayed, "why'd you send me to that school when we first got here?" "Because I was afraid, and I am truly sorry for not seeing you for who you were," I apologized. Believe in your child, regardless of his issues, and don't ever let anyone scare you into thinking he can not survive, adapt and mature, like the rest of us. Tommy and Will are at their current Montessori school because I truly believe it is the best place for them, not because I am afraid to do anything else. Sure, a transition would be brutal, but it is amazing how much more comforted you feel when you believe there are options.