Tuesday, November 30, 2010


Nov. 1, 2009 was my first day off the job. Last year, in the midst of a frightening economy, I quit my salaried position for a number of reasons but primarily to focus on and advocate for my son, to actively turn around what had become a truly unbearable situation for him at school.

This past week, I reflected on how thankful I am that I was able to take that huge step. I am grateful to my husband for accepting the financial compromise we made and supporting my decision. I am grateful to a co-worker for the most timely introduction to the person who would become my primary client as I made the move to freelance. And I am grateful to my client, for understanding my need for flexible hours and allowing me to schedule according to an outside priority.

And, in a years time, as this blog only begins to attest to, we have come miles, for both children, but mostly for my son. His needs were so great, they took priority.

But now, as we have begun to celebrate such wonderful results, I am beginning to turn my attention to my daughter. Although not as great and a bit harder to realize, it seems help is needed there too. There have been many moments I felt like posting about her lately – and so, I think you can expect to hear more about DeDe.

But for now, here's a short list of the harvest I'm so thankful to enjoy
•receiving special services at school
• finding a wonderful social worker that has truly helped our children and our family
• finding a great weekend "buddy group" to practice social skills and meeting other families we can connect to
• being assigned a great classroom teacher with a background in special education
• conversations, true exchanges, with our son
• sitting through a meal
• playdates
• Pokemon cards, perfect way for C.S. to engage other 3rd grade boys
• our family friends who joined in our meal this Thanksgiving
• my freelance clients for both design and writing
• and the many Mom's who blog (and sometimes make me cry) and open their hearts wide to the world.

Silver Lining: I can no longer bank on a salary, but my compensation has been much greater. This November is very different than last year. We are truly feasting on the fruits of our labor.

Monday, November 22, 2010

Same and Different

For some time, I have wanted to write what to me is an important influence in my life and definitely my children's — I have an identical twin sister. And to top that off, I married a man with an identical twin brother ... and no, our twins are not married nor if they had met would they have had any interest in each other.

I presume a question and go ahead and answer it because not only have I been asked this question ad nauseam after I married but also because, as an identical twin, I've spent a lifetime doing just that. My sister and my classmates, our classmates' parents, complete and utter strangers would meet us and run through a litany of curiosities and questions, many of them completely predictable. I can separate them into general categories, such as the superlatives (who is taller, prettier, smartest), the tricks (have you ever switched dates), the boundaries (if I pinched you would she feel it), and though somewhat more rare, some of my favorites are the appallingly dumb (how old are you? how old is your twin?). But it is almost comical how so many different people display such identical fascinations and ask all the same questions.

One question that stood separate from these categories was, "what does it feel like to be a twin?" It stumped me for a while and later I would respond, "I don't know, I've never not been one" which satisfied no one. But if you look at the questions, no one really fully considered what they were asking — some border on being rude (questioning my intelligence and suggesting I could decide and declare that I am smarter or dumber than my sister) and some are surprisingly intimate (switching dates) — so I did not feel any responsibility to consider my answers more fully.

More than anything, all this questioning inspired was desires. In elementary school, the thing I coveted was my own birthday party. In grade school, I desired my own look, a distinctive appearance. In high school, my own area of competency distinct from my sister. In short — I wanted not to be lumped up with nor constantly compared to my twin. I had a huge longing for independence and a free-standing individuality not based upon comparison with anyone.

As design student and then designer, I continued to value individuality and distinctiveness, not only in appearances but also in perspective.

And so, perhaps I did not fully consider the desires I held for my children. As many parents do (which I know is a mistake, but I'm still admitting to making it), what I could not have myself, I then wished that at least my children would. I prayed that they'd be creative, kind, with some exceptional gifts or talents but most certainly, that they be true individuals.

Now I am thankful to have not only been granted children, but to have realized this wish. I admire my children and their uniqueness. I think they are amazing and beautiful, in large part because of their differences. But I am just now beginning to appreciate the underlying lesson from my history of questioning — the one universal truth that I've known well for so long but until now, could not truly appreciate — that our society has an incredible fascination with and longing for sameness.

And so, when we look at my children, like so many parents do, we look at the many fascinating ways we recognize ourselves and our family in them. Not only physical features, C.S. has my eyes, DeDe has my husband's full lips, but also their behaviors. The apple doesn't fall far and I've begun to question more than once whether I or my father or my mother and so on, and so forth could be at the family-tree root of their anxiety and other sensitivities.

But where I, where we, both myself and my husband feel so unusually ill-equipped to help our children, is how to handle the social challenges. Because now, I can appreciate like I did not before, the advantages I enjoyed. I was a bit different, I always felt so anyway, but there was at least one person in the world who understood me like no other, my twin. I always had her. Wherever I was, she right there with me. And all those people who we met and knew, had us to compare each other to. Our striking similarities must have been an interesting diversion, almost camouflage, for our differences.

What is hardest to witness as a mother, are those moments when my children seem to be struggling so much on their own. I can't go to school with them, I can't be there for them, but worse still, I can't even fathom how it feels. I can't identify with what they must be facing. I can't give them strategies or tell them what I used to do. I just can't fully comprehend how it is to be so alone and to have to reach out and seek understanding. They are experiencing something I simply don't know. And, somehow, it seems so unfair.

Silver Lining: A strange turn-about really, one of the ways that I was so different as kid, was that I was so similar to someone else, my twin sister. And although I at times felt like an approachable freak, that very approachability was important. There was something about identical twins that seemed to suggest we were the source of answers. I now realize that all this banter was really quite serious and most certainly shared. Having been asked the same questions repeatedly, I must become more conscientious when it comes to answering. I must realize the opportunity I have to share this rare perspective. But first, I will rephrase the questions. I think that what people wanted to know was, Are you truly identical? Which was quickly realized as, NO. This then led to more important questions such as, Are there advantages to having someone so like you in this world? If you are genetically identical, then what makes you different? Etc., and deeper still bordering on the distinction between biology and soul. BUT, lets stick to what I can answer and that because I do have an opportunity to answer, that I feel something of a responsibility to discover a suitable response. Unfortunately, living so far from my sister, and my husband from his brother, these just aren't questions I'm asked so often anymore.

But, if I am asked, "What is it like to be a twin," —and this is something I do expect our children to ask us one day— although I'm still not yet sure exactly how I'll answer, I am working on a much more satisfying reply. Of this I am certain, I will definitely tell my children that growing up a twin, I realized that everyone experiences differences. And I learned to value my differences and treasure those things that made me distinct. I also learned that no matter how different, everyone shares something, a desire for understanding. Sometimes it is hard to understand a very different perspective and to find that, comparison may be necessary. Almost everyone does it, but please be careful when you compare people because you are putting that person in an uncomfortable position. For example, I've agreed to stand side by side to be blatantly compared many times, but I haven't always appreciated the declarations of "she's taller, she's prettier, she's _er than her" I didn't like it. If you take this act too lightly, you can get caught up in finding differences and may never realize what you were seeking in the first place. Do that and you will achieve nothing more than making people feel objectified, belittled or freakish. Use comparison to reach an understanding, otherwise, you're at best gawking and worst being hurtful and mean. You must make sure to push through and take that next step.

And now I'm finally making an important comparison I long avoided. Through my children, I'm realizing, what it is like to be a twin and that I did enjoy some definite advantages.

Tuesday, November 16, 2010

Tall Tales

C.S.'s first book report was on Paul Bunyan and yesterday we continued the folklore theme at our boy scout meeting. We briefly discussed legends like Johnny Appleseed, Rip Van Winkle, Captain Kidd. Finally, I grabbed the kids attention with a true Jack Tale. Not a polished Disney version of Jack and the Bean Stalk. I let my accent loose on Jack in the Giants' Newground.

One thing I like about the Jack Tales is that Jack himself does not posses the amazing strength of John Henry or Pecos Bill, nor the immense size of Paul Bunyan or any of the bravery attributed to Zorro and Robin Hood and besides all that, he's not even an adult, he's just a boy. Like most boys, he'd rather be doing anything other than hard work — preferably winning the attention of a pretty girl. But unlike most boys, he runs across all sorts of things with amazing, magic properties and into frightening 2- and 3- and 4-headed giants. What makes him a folklore hero is the resourcefulness and clever wit this ordinary boy employs in the extraordinary situations he finds himself in.

And yes, I'm going to try to connect this to autism. Because as I've been working so hard to see and to explain the world from my son's point of view, I have realized it is a landscape populated with giants — the large echo-y room, the thick stitching on his pants, the bright colors that like Sirens try to steal his attention. For him, these are no ordinary sensations, they are bigger than big. And of course, my favorite are those moments of rare insight and individual perspective that are like magic.

And, as I surf through the many AutieMom blogs that I read; ProfessorMother, JoyMama, Mom-NOS, ASDMommy, etc., I see tale after tale of our children out there, those on the spectrum and their siblings, facing and slaying moments that have become giants for so many of us; the playdate, the toy store and — the most fearful of them all, the giant of all giants — the multi-headed classroom.

I believe our blogs are in this sense a new tradition of folklore, not oral but written, but most certainly shared mother to mother, dad to dad, person to person. From one link to another, they spread. There are some tales I'll never forget, nor will I the many Jacks and Jills and their wonderful resourcefulness.

Silver Lining: Your stories that are so like my stories and our children who are truly extraordinary.

Friday, November 12, 2010

New Territory

Yesterday was a busy busy busy day full of talk and amazement and wonder — exactly what you'd expect when one discovers new territory, but still, it seems so surprising. It's as if we just stumbled upon it even though this is exactly what we've been striving for, for so hard and for so long.

It began with a neighbor stopping by the house after school drop off to report C.S. was in tears about a missing folder this morning and a book order. This prompted an email exchange with his classroom teacher. At 10 a.m., his Special Ed. teacher called to discuss another melt down at music class and the others on the two days before. I think we must have been on the phone for 2 hours, probably less, but still we couldn't exhaust the topic. We planned to set up a phone conference with his whole team sometime next week. After school we drove straight to his med manager and once again, as we spoke, I can't help but share all the amazing changes we've all been noticing. She was amazed. Her reaction was even more encouraging. From there we raced to Special Needs Karate (C.S. caught a cat nap in the car, much needed. His days have become, among other things, noticeably exhausting) and finally to his parent/teacher conference. His Special Ed teacher joined his classroom teacher and once again we shared story after story of difficult moments, tears, challenges but also how surprisingly well he is managing them. That he is able to recognize what is going wrong, tell others what is upsetting to him and attempt strategies to manage his problems is all good. Its all hard, but its all so good. And so that night, I of course spent another hour on the phone relaying all of this to his father who is, unfortunately, traveling. Whew, it was a long day, but it seemed I could not tire from talking, not with this topic.

If I could sum it all up, all the many things those of us who know C.S. are all noticing it is the many words that apply not to facts and video levels, but thoughts, that have been shared. That he has quiet moments now, that his can explore and savor. He has new desires, they may bring about new feelings such as loneliness, but hey! He has new awareness and self-reflection that has C.S. experiencing the weight of responsibility, but hey! Its been exciting. It seems so sudden. But it isn't. This is my little guy and its all been there filtered from view by his full array of spectrum challenges. To think of all that this tiny dose has revealed. Looking back, as I realize now how reluctant I was to try medication, I'm just a little bit sad. But it is all part of the process.

In all of the day's shared realizations, exchanges and anecodotes, perhaps the must telling are C.S.'s own words. His responses to questions from the most wonderful psychiatrist who is his med manager (MM):

MM: So, how do you feel? What do you think your medicine does for you?

CS: You mean the little blue pill?

MM: Yes.

CS: (pause – which in the middle of a path of touching every colorful toy and object in her office, was quite noticeable) It boosts my happiness.

MM: And if there was anything more you would want it to do for you, what would it be?

CS: To make me calmer.

MM: Are you calmer now?

CS: Yes.

MM: And you want more? To be more calm?

CS: Well, no. No thank you. I think its fine the way it is.

And then he resumed his tactile tour of the many objects in the room.

Silver Lining: Forging ahead is hard. When you enter into new territory, that day can be a very difficult day, full of overwhelming discoveries and ground that simply needs breaking. And the next day, and the next... But it is so exciting all the same. I hope my 8 year old sweetie can withstand the trials he faces. But I know he has lots of support now. He's not alone. We're all here, we're all watching. It is his steps we are following — and I am so amazed at his progress. These days have been full of unusually happy moments and plenty of difficulties — but every last second of it is wonderful because so much of it is new and exciting.

Monday, November 8, 2010

When Lonely is a Good Thing

I made an appointment with C.S.'s med manager for a follow up. I really can't wait bring him in and show her what a tremendous effect 2 teensy mg has made.

We haven't been completely free of melt downs or social challenges, they're still with us. The greatest change has been to talk with C.S. and to watch him explore these now quieter, content moments in ways he hasn't been able to before.

For example, this weekend, C.S. told his Dad seemingly out of the blue, that he wanted to see a beautiful church. That's a huge connection that was made there — not only that he was seeking beauty, perhaps a spiritual connection, but also as I'm sure his father who is an architect noticed, that he sought a inspiring architecture. And so they took a drive and of course his Dad knew exactly where to go on a crisp, sunny but cold New England Saturday. He took him to an antique white country chapel with an ancient church yard filled with hand carved stones. Although empty and not a time for service, the doors were unlocked and they explored the pews and altar in solitude. And then they went outside, bundled up against a cold blue sky and touched the stones, read the names and discussed how coffins were buried underground. This is a surprising discussion. Topics such as this have often caused fear and anxiety for C.S., but this time, he seemed merely curious.

Also this weekend, as it has been for the past two, C.S. awoke on Sunday demanding a playdate and complaining of lonliness. This is completely new. This is good, really good. Clearly, his desire to connect to others and make friends if greater than it has ever been.

Words to Live By

Just wanted to quickly follow up on our new Girl Scout Troop, because it in itself is a huge ray of sunshine. Our first meeting was very positive and we have five girls in our membership. In the end, two girls who had considered switching decided not to. I've learned that the parents had a meeting and were able to smooth out many problems. This is much better. These girls had been in their troop since kindergarten. That their families could work out their problems without resorting to troop divorce, is wonderful and we are all happy for them. I'd like to think this means our decisions have been a catalyst for positive change for both troops.

As for our first meeting, it was wonderful. We outlined our goals for the year and explored a troop motto. I am encouraged by everything the girls wish to accomplish and how they have chosen to define themselves so far. I noticed more than one proposed motto included the word "strong."

We also chose to include a lot of traditional girl scout ceremony in our meeting including reciting the Promise and the Law. The Girl Scout Promise is brief, only 4 lines, but those lines are packed with weighted phrases such as my honor, to serve, to help and to live by... Perhaps most encouraging however is that although lofty, these words are clearly not something we simply recite and repeat. For our troop, these words have real meaning, now more than ever. And I believe, it is a promise our troop clearly intends to keep.

The Girl Scout Promise
On my honor, I will try:
To serve God and my country,
To help people at all times,
And to live by the Girl Scout Law.

The Girl Scout Law
I will do my best to be
honest and fair,
friendly and helpful,
considerate and caring,
courageous and strong, and
responsible for what I say and do,
and to
respect myself and others,
respect authority,
use resources wisely,
make the world a better place, and
be a sister to every Girl Scout.

Tuesday, November 2, 2010


Are you tired of negative campaigns yet? I know I am. But we all know how effective they are —and that that's apparently what it takes to win.

But on this Election Day, as I'm up late watching the returns come in, my thoughts are compounded not only by a tea stained mid-term election but also by another, more personal campaign. I've been on a crusade, again. And once again, it is with Scouts. This time, it's a Girl Scout Leader and it is both DeDe and me I'm fighting to defend.

I wasn't caught as off-guard this time as I was with my son. I've known for some time that I was dealing with a bad apple here. This Leader, this woman, has had a shockingly ugly attitude since my daughter joined her troop last year. I should have heeded the mental caution flag that raised the very moment I first spoke to this woman — when I contacted her to have my daughter and the other remaining member of our troop join her likewise downsized group and she replied that she had "just got rid of bunch" of girls to somehow explain why they were reluctant to add any more. "Got rid of?" That stood out, but I rejected it easily, because certainly, she couldn't mean it the way it sounded. Even after I had been vaguely cautioned by a friend that the Leader could be problematic, I still plugged ahead with joining the troop. Hey, this was Girl Scouts! How bad could it be? Maybe she's not popular, but as a scout leader I expected, honesty and caring and all the good intentions the Girl Scout Promise promises. But, you can't judge a leader solely by party affiliations. I should have listened to my instincts then.

From day one, the leaders, especially the 01, turned their back on me. When I came to pick up my daughter at scouts, the leader was cold as ice. When I brought signs to "bling their booth" for cookies sales, she complained about the color and said it shouldn't be put it up. I worked hard on it, dammit, so I put it up myself. That sort of thing. Petty stuff, I know. Really petty behavior. But it hurt all the same. Still, as far as I could tell, it was not affecting my daughter. I was concerned however. These were obvious attempts at exclusion and a horrible example to set for a group of girls. At the time, I just didn't see what could be done about it. And so, I volunteered, I tried to be helpful and I simply tolerated her unchanging attitude as best I could. Later I tried to suggest and then basically insist that she at least say hello to me when I entered a room. But it was clear, I was at an impasse here.

As we entered a new school year this Fall, I tried to remain positive. We signed up again with every intention of DeDe remaining with this group of girls despite the Leader. But I never suspected how far she would take her attempts at exclusion.

While on our family camping trip to Acadia, I packed both the children's scouting handbooks and encouraged them to complete requirements for badges and belt loops. For her first meeting, I sent in a list of the badge work eager and diligent DeDe had completed along with some supporting photographs of her building a campfire, cooking a hot dog over it, that sort of thing. I needed the Leader's approval in order to get her badges and DeDe was eager to have them. After all, her brother had (finally) received his awards already.

Had it been any other leader, I would have expected some praise, at the very least acknowledgement of DeDe's dedication to scouting over her summer vacation. Of course, in this case, I expected no congratulations, at worse reluctance, but I was utterly shocked by the Leader's response. She outright refused to accept the request. She claimed Girl Scouts did not allow girls to earn badges outside of the troop. When pressed, she relented only so far at to insist Girl Scouts discourages girls to work independently.

I was a former leader myself, I know that on the contrary, Girl Scouts encourages girls to pursue their own interests and uses badges as an incentive for both troop and individual efforts. I suggested she check with Council about the policy. Still, I made no headway. The Leader threw up all sorts of road blocks such as the handbook was being rewritten, the badges were probably no longer available — it was unfathomable to me that her reluctance could be so great and so insistent. It was unthinkable that I'd have to push so hard for my daughter to receive acknowledgment let alone a positive response for the work she had completed. If we missed some protocol, ok then, I'd correct it. But to flat out refuse...really?

For round three on this problem, I contacted Council myself. They confirmed what I knew to be correct. I requested they speak directly to our Leader to clarify the policies. Apparently they did, because after over a month of back and forth, she finally relented. However, what I received could hardly be called approval. This is the email that awarded DeDe for all her hard work over the summer:

You can go ahead and purchase the 3 camping badges for the activities [DeDe] performed during her summer camping trip. In the future, we are to do things as a troop together and the leaders should have been informed ahead of time. If this should occur again, [DeDe] would have to present the activities to our troop and/or to Council to see if the activity has met the full requirements to earn the badge. If [DeDe] wishes to continue to do her badges on her own, then I would suggest she becomes a Juliette Low.

For those who didn't catch the meaning of that last line, a Juliette Low is a girl who doesn't have a troop, an independent. In other words, she is suggesting that my daughter leave her group. She's that close to "getting rid" of her. And all this because she tried to earn some camping badges.

So yes, I've been at it again. Crusading.

Exclusion and Outcasting, though often subtle, are serious, hurtful acts. It is the single most common way girls and women bully. But I had hope. I believed in Girl Scouting. I knew their mission is caring and fairness, building community and more; and since, in the wake of an appalling number of students suicides, the school was actively promoting a zero-tolerance policy on bullying, I thought certainly, I would find support..

I wrote our Girl Scout Council a letter of complaint. This proved ineffectual. They apparently only supply training and supplies. Evidently the only recourse in a case such as this, is to leave the troop — which unfortunately means, the bully wins.

I wrote the school Principal. But even though the scouts meet at our school, is comprised of girls exclusively from our school as well as from the same grade, the Principal claimed this problem was outside the school's jurisdiction.

And so I did the only thing I could, I helped form a new troop.

It turned out there were a number of other parents considerably displeased with this Leader's attitude. One had already dropped out after strikingly similar encounters to ours. Many others expressed an interest in leaving the troop and joining a new one, but in the end they chose to stay. Despite their concerns, they were too scared, too intimidated by the power this bully wielded. Her power, I then realized, comes not only because she has no qualms at all about being so blatantly rude and will actively outcast parents/families for any number of reasons, but primarily from the amount of access she has to school and extracurricular activities. She and her husband chair a number of committees and activities. So of course, if you want your child to be favorably received at the 5th grade talent show or other such important events, one might want to curry favor with her.

But I am not one to choose the path of least resistance. I've already committed to the fight for my kids. And I could never trust, would never leave my daughter under this woman's leadership again.

But what about my daughter? As eager as ever to get along with the girls and be a successful scout, to be accepted by a group of friends, she was now caught in the middle of all this. She's already missed her first meeting with the old troop. She's handling it all very well. Still I know how hard it is for a 5th grade girl to suddenly find herself outside a group she once felt she was a part of. It can't be easy.

I have I hopes that all this hard work will be rewarded. I believe in good Karma. DeDe will have her first meeting with the new troop on Friday. I'm not certain how many girls/families will show up. I think we have a solid group of 3 other girls from the old troop, possibly 1 who was coldly rejected by the old troop and so hadn't been able to join Scouts and 2 new girls ... but who knows. Although I certainly understand how risky it can be to take a stand especially one as dramatic as this—a divorce of sorts—I am still disappointed to discover how well meaning parents cowed in fear of this woman and will take absolutely no stand at all against such motives. Do they realize that in doing so, no matter how passive and under the radar they try to position themselves, as they lay low, they are abetting exclusion? It is exactly their compliance that is essential to successful outcasting.

Remember, a bully is not necessarily a boy or a child. Not all abuses leave bruises on the skin, some hits deep within. And don't be fooled by the halo or uniform someone wears. Actions matter.

I believe the only way to thwart a bully or an outcaster is to take a stand. I know first hand how risky it can be. I know the blows you have to take, not only when you stand against something or someone, but also when you stand up for something or someone.

When I look at all this, when I ask myself, why? How is it that my children and myself could be in this position TWICE in one year, fighting for acceptance and acknowledgement from of all things, Scout leaders, I feel certain it is exactly this expectation, this belief that has brought me here. My desire and willingness to defend the marginalized has cost me.

Unfortunately, even though I feel fortunate to have found support and be able to form a new troop, I also realize that I have eloquently illustrated how little protection a family has against parents that bully.

My next post will be about the risks of taking a stand and advocating and the price I've paid for doing it.

Silver Lining: I have bonded with the women who are forming this new troop. I know this troop will be much much more suitable to my daughter and the leader a far better role model. My daughter and I can focus on the positive goals Girl Scouts hope to achieve without facing and trying to negotiate outcasting. And I have shown my daughter how I will stand up for her too and will not tolerate a bully. I stubbornly remain hopeful for a positive outcome and believe the ideals of Scouting can be achieved.

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