Thursday, December 30, 2010

Big Smile

Here's a little shout out to a great dentist, Dr. Dinkes.

C.S. just wouldn't wiggle his teeth. He said it hurt. And so, they've been loose for over 6 months. The adult teeth had no option but to grow in behind them and the tiny little pearls that are his baby teeth simply pushed forward and straight out. We started calling them his shark teeth. But no amount of encouragement for him to wiggle them out himself could get these things to come out now. They'd have to be pulled.

I made the appointment. It seemed the week between Christmas and New Years would be the most opportune time to schedule an absolute melt down, if ever there was a time for such a thing.

I tried to think of what to say to the dentist. How I would explain the situation. What I might recommend. And so, when we arrived at their offices, I asked to speak to him first. I just briefly explained that my son has anxiety and sensory issues, that he is on the Autism Spectrum and I was pretty sure this would not go well.

I was surprised when he stepped out into the waiting room. He greeted us and began to immediately address my son. He was PERFECT! He seemed to know exactly what to do, the right demeanor, the right words, what I thought was an incredible display of competence and confidence.

Instead of being out in the large open room where we typically are for cleanings, they gave him a private room. The doctor and his staff explained everything and they had C.S. participate in as much as he could. Dr. Dinkes even placed the tool in his hand below his own so C.S. could "pull the tooth himself."

We weren't without tears or a scream or two, of course. But this extraction went SO SO SO much better than I ever imagined. I had cleared out our whole afternoon expecting to deal with the aftermath. But even with Novacaine, C.S. was in a wonderful mood. And so was I.

Dr. Dinkes even called to check in on his patient later that evening. What an amazing Professional.

Big Smiles here.

Wednesday, December 29, 2010

Clear Directions

Turns out, for our Christmas trip South, it was the "North" in North Carolina that was so confusing. This has never been a problem before. But C.S. has new knowledge — such as a fundamental understanding of North and South — and these new awarenesses often reveal how literally C.S. takes certain things.

It made little sense to him that to arrive at a place named North we were headed to the South. Even after I quickly cleared up the earlier North Pole confusion, I still had to explain a bit about one thing being relative to another. Of the two Carolinas, there is one above and one below, a North and a South, but that both states are in the South which is the Southern portion of the US, in North America. Understanding his perspective, even I was embarrassed by my clarification that was close to but not enough like a Laurel and Hardy skit. It was a set of confusing directions.

Silver Lining: I've long appreciated the opportunity to see a fresh perspective. My son offers it to me in the most unexpected ways on an almost daily basis.

Monday, December 20, 2010

12 PDDays of Christmas

On the 1st Day of Christmas my Little Love Said to Me...
Did Santa break into our home tonight Mommy?


Well, he didn't say that exactly, but the idea that someone comes into your home in the middle of the night, even to leave is gifts, is both exciting and horribly frightening to my C.S.. We celebrate St. Nick night. On Dec. 5, Santa picks up the children's wish lists, fills their stockings and then the terror begins. On St. Nick night, C.S. woke 5 times to check on the situation at the fireplace and in the living room and to check again. We finally let them have at the stockings at 5:30 a.m. But it wasn't over yet. He woke the night following, in case Santa came again. And a few nights ever since.

On the 2nd Day of Christmas my Little Love Said to Me...
Will there be anything I can eat at the party?

His anxiety about what he can and cannot eat also increases around the holidays. I'm trying my best to provide substitutes, but I am simply no match to the overwhelming amounts of cakes and cookies and gingerbread houses and hot chocolate this time of year. His usual understanding and acceptance withers beneath such abundance. Being GF/CF, soy and beef free — he can't help but find himself at the much much much smaller buffet, if not out in the cold entirely.

On the 3rd Day of Christmas my Little Love Said to Me...
Can I play Angry Birds at 3 in the morning?

The holiday version of Angry Birds is basically an advent calendar. A new game level is available every day leading up to Christmas. It is a very smart move on the part of the game developers, but now I'm convinced they don't have small children. Because, of course this is a HUGE hit with my son. It is also something that has wrecked havoc with our attempts to limit screen time and use Apps as an incentive. When we relented and allowed him him to play that day's game but only after he had gotten dressed, brushed teeth, etc in the morning before school, there have been some mornings he was ready by 5 a.m. But then there are the other really memorable mornings that he has simply snuck downstairs to the iPad at wee hours like 3 and 4 a.m. Nights like these are starting to make for an Angry Mama this holiday season.

On the 4th Day of Christmas my Little Love Said to Me...
Do I have to watch the holiday movie?

His classroom teacher noticed that while watching a holiday movie at school, every time Santa appeared on the screen, every time, my son would get up and pace in the back of the room. He simply couldn't watch.

On the 5th Day of Christmas my Little Love Said to Me...
I'm the worst kid ever!!!!


My son already puts tremendous pressure upon himself not to make mistakes. He's a smart little guy. But he has incredibly anxiety about tests and spelling bees and grades. December brings the added delight of the first report card and his first concert. And so, winter is filled with even more anxiety that he will not make the grade. As if the naughty and nice list wasn't enough.

Fortunately, we have a therapist on board this year and she suggested a wonderful change of perspective. C.S. has agreed not to shout out things like "I'm stupid!" but to say instead "Whoopsie!" acknowledging that mistakes happen and that mistakes are OK. So far so good, but C.S. is still asking "where does Santa get the coal and banana peels?"

On the 6th Day of Christmas my Little Love Said to Me...
How far are we driving!?!?


Deciding to travel on the holidays is nerve wrecking for all of us, but of course, especially the children. And so we put every effort into planning and figuring out how to make the trip as smooth as possible. For example, we decided to break up a 13 hour drive over 2 days. Another part of the planning is to gradually begin to describe our plans to C.S. as soon as possible so he knows and gets comfortable with what to expect.

But it is amazing what can get lost in translation. I finally figured out there was a severe communication error when C.S. told someone we were going to the North Pole for Christmas. When I asked where he got that idea, he explained we must be going to the North Pole since it would take two whole days to get there. Aha!, He thought we'd be driving non-stop. That we were stopping at a hotel with a swimming pool had somehow gotten lost or confused with Mr. Popper's Penguins, the book he's been reading. No wonder he was so anxious about making the trip!

On the 7th Day of Christmas my Little Love Said to Me...
How will we get our presents down to NC?


Every aspect of the trip planning eventually gets explained, in detail. Some details end up getting repeated more than others

On the 8th Day of Christmas my Little Love Said to Me...
Can we pray before dinner?


I had finally gotten around to getting candles in the advent wreath. The creche isn't out yet and since we're traveling for the holiday, I'm not certain if it is coming out. But we've been to church and we've sung many many songs about the birth of Christ. I guess I shouldn't be surprised by such a question. But there's nothing that can stop you in your tracks like a child's voice asking to pray. Little angels are so incredibly powerful. No wonder Christ came to us as an infant.

On the 9th Day of Christmas my Little Love Said to Me...
Will we get to see our cousins
?

The opportunity to see family truly excites the children with a pleasure unsullied by anxiety.

On the 10th Day of Christmas my Little Love Said to Me...
Will there be a snowstorm tomorrow Mommy?


The forecast is bad, here and in North Carolina. Still, I imagine we'll start driving no matter. Changing plans is not something we take lightly in this household. But the South and their lack of snow plows really throws our plans into question. So far, the mountains where we're heading have been snowed in for days already. I've heard some churches canceled services, and we're talking Bible belt here — so, it is that serious. So, I'll have to be specific, I'm dreaming of a fluffy-dusting white Christmas.

On the 11th Day of Christmas my Little Love Said to Me...

I'll have to keep you posted. But so far, I think I see the light at the end of all the anxiety.

Merry Christmas to you all!

Friday, December 17, 2010

Waiting for Attention

I picked up the kids from school a little early yesterday, to take DeDe to her appointment. C.S. was escorted to me by his teacher. The teacher just wanted to explain how difficult it had been. Dad is traveling, so this is not entirely unexpected. But it sounds like this bad day was much harder than his typical bad day has been. Another badder than bad day at school. Please, help us make it through the winter.

But today's appointment would focus on DeDe. Somehow I'd have to share an equal amount of concern for her. Even though relative to her brother, she's a breeze, clearly she needs help too. Even when C.S. is in a state, demanding attention.

I knew C.S. would calm down once he was with me. I'd let him have the iPad while we waited out the appointment. And then I'd be able to sit beside him. Let him lean against me, press his head into my shoulder like he has, always, into some part of me. Eventually, I'd just absorb all the pressure he has been feeling.

C.S. was conflicted however. Here he was in the offices of these two wonderful women who typically help him. He greeted Dr. FineTime with his most charming hop up and smile and though she returned the warmth, it was DeDe who was allowed to follow her in. This time he was left in the waiting room.

He stole away at one point and walked into Dr. FineTime's office, interrupting their coloring session. I pulled him back again. "Its her turn, honey."

And now, DeDe has her own diagnosis. A classic case of ADD.

Silver Lining: My children are incredibly intelligent and bright. They have active minds and over-active bodies. They are caring and loving and beautiful. But somehow, we gave them an extra dose of individuality. It's going to be especially hard in this region of the U.S. where everyone around us seems to place such a premium on fitting in solidly with some group or another. Thankfully, we've found a group of professionals who can help us while supporting their wonderful distinctiveness. Because, they are beautiful. Or as Dr. FineTime says, "they're just delicious."

Wednesday, December 15, 2010

My Ideal Room Mom

The time has definitely come to tweak the role of Room Mom.

The Room Mom is someone who volunteers to help out the teacher throughout the year when it comes to planning and coordinating parent contributions usually for class holiday parties.

Typically, the focus of the Room Mom's input is all on being cute and creative. Cute themes, adorable craft projects, creative foods shaped like a non-food something, that sort of thing. The focus of the other parents' responses and input is primarily to reply to the email wish list with what they can contribute – napkins or cookies.

But there's so much more to consider, really.

Food allergies, intolerances and sensitivities have increased. I've never known so many children to have life-threatening reactions to common foods.

But also just the disruption to the day in general deserves attention. Many children suffer when their routine is disrupted, not just those with more pronounced needs, but certainly kids like my C.S.

My ideal Room Mom would realize these things and so take her role seriously. She would plan parties with the concern of a mother, the organization of a teacher and the grace of the best hostess.

She would get to know the class, the many different personalities and certainly any food intolerances. She'd use this knowledge to plan a party to help her guests feel comfortable, at home and at ease.

My Ideal Room would know that of course, with all the food intolerances these days, it would be difficult to plan a menu where every food item met everyone's preferences, but she would try. She would insist that at least one primary food item and/or holiday item on the menu be suitable to all her guests diets. (In other words, not only would no one have to fear for their life, but also the dairy free would not be relegated to eating grapes at every party)

This Wonder Woman would be sensitive when it came to planning activities. She'd have creative solutions and not resort to "tried and true" old school games that rely upon winning or elimination for the fun, but would create her own party mix. Like the best DJ, she'd be able to gauge the mood of the room. She'd know just when to transition and exactly what it would take to get everyone out on the dance floor smiling and feeling good.

She might even make a party program, perhaps in poster form (or visual organizer as parents like me know them) so the kids would know what to expect and be able to manage their own expectations if needed.

In short, her planning would be so much more than cute trimmings but would add real value to the party.

And I am idealistic enough not only to believe that such a Room Mom is possible, but to even expect that our Room Moms begin to understand this perspective — at least I'm trying.

I signed up as a Room Mom for C.S.'s class. I'm one of three. I'm not the "lead room mom" The one who is, was Room Mom for my son's class last year. She is a Reigning Room Mom Supreme and she is obviously not welcome to my input here. But despite this, I've had a few successes.

I suggested a few changes and additions to the Halloween party. Most importantly to me, that not only would we have a fun allergy-friendly food option but that we not add frozen "eyeballs" to the "blood punch." How ironic that this would come up at the first party. "Eyeballs" was the word the kids used to taunt C.S. mercilessly with last year.

I was left out of the planning for the Thanksgiving party. Without my input, of the 9 food items on the menu, only 1 was dairy and/or egg free. For at least 3 children, that was a problem. So I just made sure to bring in plenty of allergy friendly substitutions including an adorable apple pie. The kids seemed to appreciate having them.

But for the upcoming Christmas party, Room Mother Superior had clearly had it with my suggestions. She accused me of "taking the fun out of everything." So soon after our Sensitivity Day, this and many other impasses I was having in my efforts to be a Sensitive Room Mom was disappointing. I'll be honest. I felt like giving up after that. But I know I won't.

Silver Lining: My ideas may not be popular with the reigning Room Mom. Obviously she felt tweaked. And fair enough, because although I meant nothing personal by it, that's exactly what I had every intention of doing essentially. I may not be making much ground with her, but I think Room Mom number 2 may have come around to seeing classroom party planning from a more Sensitive perspective.

Tuesday, December 14, 2010

Fingernails

I took C.S. to the dentist yesterday. And so I noticed his hands that would not, could not quite leave his lips or the hands of the hygenist — they were filthy, or specifically, the nails were long and there was dirt under them. As I trimmed them today, I made the most amazing realization — trimming his fingernails is something I have not done since he was an infant.

Silver Lining: He no longer bites his nails. Scratch another one up for those 2 little milligrams!

Saturday, December 11, 2010

Sometimes it Takes a Child to Teach a Village

A league of parents, many whose children had some sort of disability, joined together with the support of the local school board to develop a program called "Sensitivity Day" for our schools. The goal was to recognize diversity, respect differences and educate students on how to best interact with their peers, the community and beyond. Town officials and local professionals were invited as special guests to participate in a two part program; a read aloud program for every classroom and for the 4th graders, interactive learning stations for a more hands-on experience. The program had a successful inaugural run at three of our five elementary schools last year. I looked forward to equal or even greater success at our school this year.

While those of us who know and love such children— children who have AD/HD or autism, who have hearing or vision disabilities, who stutter or who are even just over-weight — can understand them, support and console them, we can not go to school with them. We have little opportunity to explain our sympathetic perspective or to engage with their peers. And that is why I was so grateful for Sensitivity Day. On this day, there'd be plenty of opportunity not only from Moms and Dads but also for local dignitaries such as our Town Selectman; a spokesperson from Guiding Eyes for the Blind and her service dog Elvis; and CEOs and therapists from the hospital's Special Needs Center to name just a few to read or speak directly with the children in a program intended for them at their school.

It is my hope that the students came away with a new understanding or better yet, that maybe, a few children would see their peers begin to engage comfortably with them in ways they hadn't known before. Believe me, although I deeply appreciate how the classroom teachers, special education teachers, speech and occupational therapists, etc. support my special needs child, there is nothing I am more grateful for than when another child, a peer, reaches out to him, when he makes a new friend at school. Ultimately, success depends upon the children.

I am hugely thankful to the many volunteers and organizers who developed, to the town and the schools' PTAs for sponsoring and to the many leaders in our community who participated in this program. You took an important step to make our school community stronger and more inclusive, one where hopefully every child can truly find a welcomed place in their classrooms.

Silver Liner Notes: the above post was adapted from a letter I sent to the Editor of our local paper in hopes that it would be picked up as an OpEd prior to the event. It didn't run. But, I'll take another crack at it in the spring when the last of our five local elementary schools hosts the program. During our event, I took photos and got quotes from some of our visiting dignitaries. I have over 400 images to sort through. By spring, I'll have gained any necessary permissions. I'll have captions written. I'll have an OpEd turned in weeks in advance. And I hope to assist in the development of an absolutely irresistible press release. I want everyone, children and parents to get to understand at least one of these children's perspective better. Because, sometimes it takes a child to teach a village.

Wednesday, December 8, 2010

In the Bleak Midwinter

According to my husband's Germanic traditions, this past weekend was seeped in Christmas as we prepared to celebrate St. Nick night. It's a weekend flurry of activity full of exciting things like visiting a nearby Christmas tree farm. We pack GF/CF versions of hot cocoa and marshmallow treats and make an event out of cutting down a tree with friends. Then we haul out boxes of decorations and old toys, all that have some special story or remembrance that gets retold as we remove tissue and bubble wrap and place them on the tree. We bring out an electric toy train — I'm sure all you Autie Moms know what sort of excitement a train can bring. And of course there's the stockings. The children hang them under the mantel and leave a note for Santa — a wish list for Christmas now only a handful of weekends away. Generations of toys, a lifetime of stories and the sparkle of childhood wishes being fulfilled excite not just the kids, but us too. It is hard not to go all out when it comes to Christmas. Each year, I vow, we should cut back.

Because after all, C.S. had one very bad Friday at school.

And Monday wasn't much better.

By Tuesday, I was on a phone conference with five members of his Special Ed team from school. Granted, we had intended to plan a conference call for some time, but on Monday, the date was quickly made with a sense of renewed focus and urgency.

And as for my search for the bright side of all, it is not hard to find. (here's my silver lining right here, in the middle) This year, we have a five-plus member team in place to help him through such difficult days. We have a social worker that knows exactly how and what to say to coax an explanation out of a him and help us all understand his perspective of the situation. I'm at home and available to him more than I've ever been. Still, even with all this in place, I could not prevent our annual winter meltdown. It came all the same.

Sometimes I wonder, would it be so Grinchy of me, if I took away all the do-digglers and ting-tinglers. Afterall, according to the book of Seussian wisdom as well as common sense, without them, Christmas would come anyway.

There is a huge part of me that wants to tuck my children into our home. And there, around a fire in our fireplace, very quietly, barely leaving a trace in the snow, sometime in the midst of a dark and quiet semi-hibernation, then, I'd allow Christmas to sneak up on us, bright as candlelight in the bleak midwinter.

But I could not prevent Christmas from roaring in like a train. What was once the quietest season of the year, now bustles with activity for all of us. It seems especially so for the children. At school, the Christmas party seems to come so fast on the heels of the Thanksgiving party that had to live up to the call for a feast and that so soon after we celebrated Halloween with costumes and bucketfuls of candy. Each of these are a discomforting disruption in the now established routine that for C.S. is so comforting. Add to this that the school is wrapping up the first half of the year with book reports to complete and report cards to be issued. Winter concerts are right around the corner too. The thought of all these performance assessments has C.S. overwhelmed with anxiety.

Would it be so bad if I wished our winters were once again darker and more bleak?

Monday, December 6, 2010

One Bad Friday

When I arrived to school on Friday, the school social worker walked out with C.S. as he came into the cafeteria for pick up – never a good sign. Clearly he had a bad day already and it wasn't long until he was in tears again, had fallen to the floor, hid behind the tables and declared every hurtful thing he could say about himself, "I'm stupid! I don't know why I'm here. I just wish I were dead!" that flooded me with concern and worry and a heartbreaking sense of defeat.

Was it because he was off diet? The new medication has increased C.S.'s appetite immensely. Add a mix of tantalizing foods following Thanksgiving and I soon discovered that he had been snitching like crazy! And he had been suffering the consequences: lack of sleep, GI distress, grumpiness.

Was it because his routine was disrupted? Was this our annual melt down coming a little later than usual? Just when we think we've settled into the school year and feel we have things going smoothly, sometime in November C.S. typically hits a rough week. I think its the disruption of Halloween parties, then Thanksgiving and expectations building at an ever increasing intensity towards Christmas. In the past, we hit the meltdown sometime in November. We got so close to making it through?

Was it because the medication is too little now? The new medication has shown some surprising results in his weight as well. I've already handed-down clothes I just purchased last month!

Was it me? Was it because I somehow relaxed my diligence? Because I was ready to turn some needed attention towards DeDe?

What was it!? What had sent us on the fast track back to that old territory of melt downs, tantrumming and the dreaded death wish that was so reminiscent of last year's frightening bad November. All the sudden, all that progress I was thankful for, that I thought I had made, had seemed to disappear, my son on the floor in a clearly painful puddle of tears.

Whatever it was that had happened, he wasn't telling. Not to his para. Not to his classroom teacher. Not the school social worker. And not me.

Fortunately, we had a meeting with his therapist that afternoon. Unfortunately, I had given the appointment to DeDe. This was going to be the first week we'd skip him. But she took the last 15 minutes to invite both me and C.S. up to her office and I got to witness how she manages him. I think she had every intention that I'd be there as some sort of apprentice. I added very little to the conversation, but I learned a great deal by watching.

She asked him to tell what had happened. Even though he headed straight to his bad behavior, the things he knew I was focussing on with such worry, the things he knew he'd get in trouble for, the things that clearly set him apart from others – she rephrased it, simplified it by responding: "It sounds like you had a really bad day."

Her simple statement, filled with empathy, gently opened the barricade he had been hiding behind all day.

He explained what happened at recess that made him run away from his Para, hide behind the big dumpster and almost bolt off the school grounds before they finally caught him. His new friend, his best friend and he, had had a disagreement about how to play at recess.

It seems a small altercation. But you have to remember how HUGE it is that he has a friend like this in the first place. And how NEW having a friend is to him. She realized it instantly. She did not try to explain that he was making a mountain out of a molehill. She responded in a way I know I will emulate from here to eternity.

"First I want to validate your feelings." She directed this statement to him, but I think it was a bit of instruction intended for me. She defined the word for them and then continued.

"I understand why you felt so bad. I think you just need some help understanding what to do when you feel that way."

C.S. quickly confess, "But I said a bad thing. I told Billy we weren't friends anymore."

Tears were welling up in his eyes.

He interrupted her as she tried to respond, the flood gates had opened, both for sharing and his tears. "And then I said another bad thing. I told him I didn't want to play with him ever again."

"I can tell that makes you very sad."

Their conversation was wonderful to behold. I was so grateful how she had helped him. Finally, I understood, no matter how much this Bad Friday resembled old territory, we were still solidly in the new, making progress, not just him and but me too.

He had made his first friend. Of course there'd come a time when he'd experience their first misunderstanding. It probably seemed like him too that this was just like all the ugly Novembers we had known before. But it wasn't. This was all good too. An opportunity to learn something new. Including our goal for next week. Making up with his friend.

Silver lining: I realized that one Bad Friday cannot erase our progress. We're just trying to gain some new skills. And pretty soon, we'll know how to manage the everyday bad day in a new and appropriate way. Here we both have an opportunity to learn and to practice.

Tuesday, November 30, 2010

Thanksgiving

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

Outcasting

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.

Friday, October 15, 2010

Quirky Stuff


Just wanted to share some of the quirky stuff C.S. comes up with that I just love. Yesterday he brought home a science test. He did very well. He was excited not only to share his grade with me, but also his answer to the last question:
If you were in a forest all day and all night, what would you see? Write 4-5 sentences that will describe a forest. Make sure to include the living and nonliving things you will see.


His response was dotted with his personally created set of punctuation marks, a few music notes and was full of word and sound repetitions that didn't exactly form meaningful sentences. He sang it to me. How amazing.

"That was beautiful, honey. But do you think your teacher understood what all your punctuation marks mean. Not everyone knows those."

"She does. I sang it to her."

So glad to know that not only did she give him full credit for his answer, that she listened as he sang it to her. A science test in song. I love it.

Thursday, October 14, 2010

Middle Child

I have only two children and with these two, there seems to be absolutely no middle ground so I was surprised yesterday to discover how trapped DeDe was in the middle of C.S.'s different abilities.

I first realized this driving in to school as I was quizzing DeDe for an upcoming science test. Surprising us both, a little voice kept chiming in quickly from the back seat. C.S. knew all the answers as DeDe remarked indignantly "without even studying and I'm the one in 5th grade!" After school, while doing homework, I was quizzing her on multiplication tables. She needs constant practice because it is just not sinking in easily. I made certain we were in a different room, but we both heard C.S. laugh from the stairs when, while just on fours, she missed an answer — for which he got a quick and stern reminder that he needs to be considerate and understanding of others. But he could easily see how DeDe was nearly destroyed by this — big sister was in tears — and pretty soon so was he. Good grief. As I moved back and forth trying to console my children, my daughter, who was so totally confounded by her little brother, tearfully confessed her fear that he would make it to college before her. Always competitive, she realized perfectly how many ways she was at risk of loosing out to him.

I explained to them both that they've been given very different gifts. DeDe is a passionate artist and natural athlete (and, she insists, blessed with the ability to talk to animals in their own language) and C.S. a glutton for facts and figures. They both agreed to the assessment — but it was small comfort to DeDe. She is an exceptional young lady herself, still I can see how she might feel caught in the middle of her brother's more dramatic extremes.


Silver Lining:
One of my favorite quotes, I'm not certain from who, friend or celebrity, is "Why be Normal. Normal is boring." Never a dull moment around here.

Tuesday, October 12, 2010

Play Dates

While I still wish play for my children could be as spontaneous and taken for granted as it was for me when I was a kid, I've decided to make the most of the Play Date. In charge of making arrangements myself, I am able to pick what I think will be an ideal time, setting, duration and even guest. It allows for a great deal of control over the social situation.

We had two for each child over the long weekend. I'm so glad to report that my blog will not end in a silver lining today because it is unnecessary. Everything went incredibly well, not only for the children, but also for me. Our Saturday venue for C.S. was arranged by his "friends group" facilitators. This Saturday, instead of meeting at the doctor's offices, we met at the home of one of the other families. While the children practiced playing appropriately with one another, I got to sit down at a kitchen table and chat with the other two mothers who I had not had a chance to really meet yet.

How wonderful. How supremely enjoyable. They were amazing women. Kind, welcoming and so perfectly understanding. (She even offered snacks my son could eat!) How perfectly supportive it can feel to just speak to someone who understands the trials you face so well. Smiling and hopeful, these veterans of the Spectrum had realized their place on it much earlier than I and had obviously faced much more difficult trials. I was glad to have found them and humbled by the experience.

I also have to admit to a small but somewhat understandable worry — after hearing how one's daughter climbed up a ladder, across the roof and down a chimney and the other's son was diagnosed without a battle due to his repetitive behavior at 16 months — my own challenges seem so small next to these. I have to wonder if although having found a wonderful community, whether we'll find ourselves on the fringe of it. High-functioning does seem to place you on the fence in so many places.

We'll see I guess, because I plan to call the local Mom and meet for coffee. I'm looking forward to more and more play dates for all of us!

Monday, October 11, 2010

Tipping Point

I had an absolutely lovely lunch with C.S. the other day. We talked. By this I mean, we had a true conversation, an exchange of ideas. He sat in his seat. He ate with his chop sticks — perhaps just because of the novelty, but hey, he was using utensils. And I suppose I have to give credit to a difficult evening that brought us to this wonderful place for lunch.

As I've mentioned there are times when my son's behavior suddenly surpasses quirky and takes those around him by surprise. We ran smack into one of these a few weeks ago.

I was trying to support my daughter, dear DeDe, to help start up an Odyssey of the Mind team at our school. A parent had graciously offered to have the preliminary meeting at his home, by their pool. It sounded like a great plan. The kids could enjoy one of the last warm evenings before Fall blew in and we'd be able to work out some complicated scheduling and logistics while they played. I had no other option but to bring C.S. along, but he loves the water. I felt we had a fairly high probability of this going well.

We arrived to a welcoming poolside spread of pizza, fruit, drinks and more. I wasn’t prepared for that, I hadn’t brought a substitute snack. But the kids took quickly to the floats and C.S. didn’t mind as they nibbled away at treats. The set up was working out fine. It seemed more like a party than a meeting and everything was going swimmingly. I had made it through the meeting and now it was time for last year’s leader to demonstrate what OM was all about to the kids. C.S. Stayed in the water while his sister got to focus on a task with her group. She was having tons of fun with no interruptions from her little brother. It seemed my only real concern would be how to coax him out of the pool once it was time to go.

In conversation, our host mentioned he had a dog. Both my children adore animals. If there was a pet around, I'm sure they would have found each other by now, so I asked where the dog was hiding. He explained he had him crated because he likes to jump in the pool and will try to climb on the kids when they're swimming. So when the man offered to let the dog out if my son was ready to dry off for the evening, it seemed the perfect solution to transition him had just been presented. I called out to C.S., "hey, you want to see their dog swim? Why don't you get out and let the dog have a turn? The only way he can go in is if you get out.”

C.S. eagerly obliged. Minutes after he had dried off, an energetic Wheaton Terrier came bounding across the yard, down the steps onto the patio and happily lapped legs and hands of the admiring children, but he did not jump into the pool. C.S. loves dogs and usually pets them with such amazing tenderness. But something had happened, or more precisely, had not happened. C.S. was not his usual self. He petted and greeted the dog with his typical smiles. But then, he did not caress his soft ears or lay his cheek against his fur. He tried to push the dog into the pool. The homeowner was able to stop that one. But C.S. persisted and tried to pull the now cowering animal across the patio by the whiskers. The dog snapped at him. Naturally the owner got defensive and obviously upset. As I intervened, C.S. began to cry, then wail. We were headed for a meltdown. One of the other parents grabbed his son and left in a hurry with such an expression of fear and disgust, as if behavior like this might be contagious. But C.S. was actually containing himself rather well. I was able to get him to sit on a chair. DeDe, ever patient and helpful, had already begun packing the bag for our get-away. We ended up leaving in retreat. DeDe had a chance to become friendly with the girls in the group, but I felt pretty certain after this that it would go nowhere. She would likely be invited on just as few play dates as last year.

What is a Mom to do when one child negatively impacts the other. I feel so protective of my girl too. I had to do something.

And so, we, my husband and I, considered medication for our son. A very small dose, only 2mg. The doctor said we were targeting his anxiety. Our goal was to help him become more flexible and to just take the edge off which would help him not only in school and social situations but also to access the therapy. It sounded reasonable. But we had some fears to face, such as the gaunt, vacant stare we had seen on a kid we knew on Ritalin or the unexpected opposite reaction C.S. had to cold medicine. But she reassured us, that although this would be trial and error due to his atypical neurology, we would watch him carefully.

I can’t keep my eyes off him now. Absolutely I’m watching him and marveling at how calm he is. How his eyes don’t flit around all over the place when I speak to him. He makes eye contact. Not always, but when he does now, I am just drinking him in right through those big beautiful dark brown eyes. He sits in his seat. He’s not flipping and flopping all over the bed when we watch TV. My husband is equally amazed. We are all simply enjoying him. He’s still his quirky self, he still runs around doing his quirky stuff. But now, everything about him seems so much more content and available to us.

It has only been eight days since we gave him his first dose. Its hard to say if we’ve avoided a meltdown in this time. The change is slight. But it is so full of promise.

Silver Lining: I guess this goes to show that when you hit a tipping point you can use that energy and momentum to move in a positive direction. Who knows where exactly we’re headed, but for right now, I’m really enjoying this new territory. I'm truly enjoying such seemingly simple pleasures like having a conversation with my son.

Tuesday, October 5, 2010

Cashing In

We have an appointment for C.S. today and another scheduled for Friday. Today, I will pull $450 from our health insurance savings account to cover the Doctor's fees. Although we'll go to the same office, this will not be an option on Friday. We will be meeting with a social worker and so then I will pull out my check book and sign away $200. But I love these appointments. I think they are the key to making tremendous headway and I am glad we've started on this path. Of course I know the autism mantra — early intervention is key — and he is eight. I feel late to the game. So, two appointments in one week doesn't faze me because right now nothing could feel more imperative. Still, while we've staunched the tears that once flowed too threateningly, we are now hemorrhaging cash.

I freelance to earn money for the family and am fortunate to have found a reliable client with a steady flow of work. I left my salaried position to allow me more time to advocate for my son. It has proved to be a full time job. All of this is incredibly rewarding, but of the two positions I hold, there is no more gratifying compensation than seeing my children, their health and happiness, improve. Unfortunately one is desperately dependent on the other. This makes me an incredibly busy woman.

But I'm worried I won't be able to keep this up. I've got my fingers crossed hoping I can convince the insurance company to cover a greater portion of the fees while also trying to will the deductible to hurry up and be met so we can begin to receive some reimbursements. We are running out of money. But, this, these therapies and the advancements they promise, is not an opportunity I could turn down. I will spend whatever it takes. I have every intention to cash in, somehow.

Silver Lining: After this expensive week, I just may have meet his deductible. Even if I'm not able to convince the insurance company to cover a greater portion of the fees, yet, at least we may be well on our way to receiving our first reimbursement check. And then that money will just cycle right back into the process and I'll have a little more available to pay for the next appointment.

Thursday, September 23, 2010

Crusades

I haven’t posted in a while because I’ve been on a crusade. That’s what my husband calls it when I get up in arms defending our children—most often our son. I have fought some unlikely foes—a kindergarten teacher, the school social worker and now, a boy scout leader.

I realize these titles can be worn like a halo. These are the good guys. And since I’m the one fighting them, then it follows that I must be the one in devilish red or black, the bad guy.

If it were only so simple. Because of course, I fell for the sanctity of these well-known images too. I signed up for boy scouts trusting that if anywhere, here was a community that could appreciate my little guy. It is very unlikely he’ll ever become an athlete. He won’t have an opportunity to win sports awards and trophies. I turned to the scouts to give him not only a community to belong to, but also a forum that will recognize and award his achievements. I wanted the Boy Scouts and everyone involved in the local organization to be, not just good, but everything it professes to be, every last one of them.

But, I’ve experienced parent-run organizations such as this before. They are as suspect to social pressures as anything else. And though determined to make positive changes for my son this year and despite my efforts, I could not protect him from falling victim to what appeared to be a combination of social jockeying, misguided leadership, persistent inconsideration and then, what got me really riled, an outright snub directed at two members of our den including my son. And so, my latest crusade ensued.

It is almost over now. The fire has faded to embers. At this point I believe that a misstep like this will not happen again, that these leaders will be more aware of the need to manage transitions and of the care required when publicly recognizing the boys’ achievements. I confronted a small but preventable injustice and achieved a perhaps minor social change however it is one I am certain will grow to benefit not only C.S., but also others. Unfortunately, I also know that by fighting, I have made enemies.

It seems, for every social gain I achieve for my children, I threaten to lose just as much in the same arena.

It is hard. It is very hard on me. Just as I wish for my children to have friends and feel like they fit in, so would I like the same for me. I can imagine this would be so much easier if I’d just play nice and get along, especially with the “good guys,” the right people and others with social influence. “If you were smart, you’d just drop it,” is something I’ve heard before.

But, I’m just not like that. He was innocent, is innocent. And no matter who you are or how much social influence you can yield, if you intentionally hurt my child, I will throw every sharply articulated word at you I feel is appropriate and hit my target as squarely as I am able in his defense. Which is what I did.

I’ve been snubbed since. Of course I notice. I spend every day helping my son realize the importance of making eye contact, teaching him to take the perspective of others, helping him perceive the many unspoken messages involved in our language such as facial expressions and other subtle clues that signify when contact is acceptable and when it isn’t. How ironic, that similar deficits are intentionally employed to snub him…me…us.

Of course, I’d like to think people are self-reflective. That once the immediate defenses are down, whatever the situation, in the end it will resolve into some sort of greater understanding and all of this will be somehow worth it. But I don't think that will happen.

Expecting reflection of others, I have reviewed my own role in this quite a bit. Did I get too angry? Do I fight too often? Should I have just played nice and let it go? I’ve concluded:

It is important to confront a bully. Until recently, I’d never faced bullying before. I’ve been aware of cliques, easily avoided them and had not become a target until my forties. But now, as a grown woman with young children, I seem to have found a source of plenty. Perhaps it is because I cannot convey the economic status or social support afforded me through grade school. Perhaps it is because this area is so densely populated—although outside “the city,” we are far from the peaceful countryside. But much of it seemed to begin when C.S. entered a mainstream school.

C.S. received so little social support at school that he was the target of relentless group bullying last year. He dreaded going to school. He cried and was so distressed he said, "I just wish I were dead." That's when my whole approach changed significantly. I quit my job. I began the process to have him reinstated to receive services at school. And I became as involved as possible at his school and in his activities. I was determined to defend my son.

So there I was standing ready and defend him I did. So now, I am feeling unfairly slighted by this woman's friends, but at least I'm not as vulnerable as C.S. was last year. I continue to remind myself, this is uncomfortable and unfortunate, but this I can face.

Here’s when I pray to my grandparents for support. After their death, I found a letter from the most reputable teaching hospital in the state diagnosing their daughter’s condition. My aunt had Down’s syndrome (what was then described as Mongoloidism). The letter included a professional recommendation that they hand their child over to a family on a farm or in the country where she could grow up in peace because she would never thrive socially and that raising her themselves would have a negative impact on other members of the family. They did not take this recommendation.

That does not mean the doctors were wrong, that anyone was wrong. The doctors’ prediction was realized exactly. My aunt did not thrive socially. Precisely due to her condition and as predicted, her presence among them had a considerable, perhaps negative, impact on the entire family. My grandparents certainly faced slights large and small that shook their beliefs and the very foundations of their sense of community—the greatest of these was when their church asked that they no longer bring their daughter with them to service because she was too disruptive. As my aunt grew into her teens and then twenties, she became increasing isolated, shunning anyone but my grandmother and practically living in the basement. Sadly, my grandmother seemed to grow more socially withdrawn right alongside her.

But because my aunt thrived well into her twenties (at the time, unprecedented); because, although isolated, she lived with her family; I believe my grandparents were one of the many who helped break down social barriers for Down’s children and the families that followed.

High-functioning autism is not so easily recognized. Being harder to identify, it is perhaps unrealistic for me to expect my efforts to yield a similar increase in social acceptance and understanding for my child. If I were to exact a social change, which is something I desire, I have decided that I must focus on this: to deter the spread of intolerance, to encourage sensitivity and to defend a parent or child from being cruelly targeted for social ostracization simply because they are quirky, odd, outside the mainstream or otherwise different. I'd like people to be not only tolerant of but appreciative of differences.

And although we've had a rough beginning, I have thankfully received enough support that I now once again feel confident Boy Scouts will be the perfect place for both me and C.S. to achieve our goals. Here's looking forward to another exciting year.

My silver lining: I admire my son for his unique strengths and amazing abilities. I admire my daughter for her sensitivity, caring advocacy and tolerance. I admire my friends for their simple kindness backed by truly individual beliefs and integrity. And while my crusades may have distanced me from some socially, may have caused me to loose a potential friend or made the road ahead bumpier for me, it has brought me closer to those I treasure the most, including some that I thought I had lost. Although I still miss them dearly, I feel my grandparents’ presence more than ever. I am proud of their long-ago decision to keep their daughter despite social consequences so accurately predicted. Although the doctors were correct in their judgment, in the end, my grandparents’ decision was what was right. By example to me and to the greater community, they showed that there is something more valuable than protecting one’s social status—loving your child. And so, when I feel a little shunned I tell myself, now I can understand exactly what my children are facing. By joining them, they do not have to go it alone. I’m right there with them. And sincerely, I am certain, there is no place I’d rather be. It just feel right to me.

Monday, September 13, 2010

"Monday, Monday, Can't trust that day"

Knowing how much C.S. loves to hug those he likes like someone he loves, then it is easy to see how my husband would expect a hero's welcome when his Charming Son woke to find him home. But if I felt the week had been arduously long, then I could only imagine how much it affected our son. The world had changed; from summer vacation into school, from bear hugs to five-finger squeezes and so much more. And when my husband went out and gained a fresh, new perspective, unfortunately he lost some of the old one in the process.

I can't be sure how C.S. was feeling, but I'm pretty certain that whatever intoxicating cocktail of emotions it was, it was just too much for him to process on a Monday morning. When John woke him up, fully expecting one of those fabulous hugs, he was met instead with reluctance. Then C.S. hid under the blanket and said "I don't want to look at your face."

John was hurt. He had been flat-out, coldly rejected. And he knew too well how he felt. Unable to control himself, he responded, "Can't you see how that makes me feel?"

How I wanted to step in and remind John that, well actually no, he can't, remember. He has trouble taking the perspective of others. But knowing it and experiencing it, is very different.

It had been a long Monday ever since. We arrived late to school. The scout meeting went waaay too long. The two hour agenda was boring enough as it was, but complicating that, the room is large and echoes. It hurts his ears. C.S. just couldn't attend at all. And then...well, suffice it to say it was an overwhelming Monday—a jolting transition, a difficult new beginning. Monday's are notorious for that very reason.

It reminds me of the song, appropriately enough by The Mamas and the Papas:

Monday Monday, so good to me,
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn't guarantee
That Monday evening you would still be here with me.

Monday Monday, can't trust that day,
Monday Monday, sometimes it just turns out that way
Oh Monday morning, you gave me no warning of what was to be
Oh Monday Monday, how you'd leave and not take me
.
Silver Lining: None here tonight, not to be penned anyway. I trust, from practice that it is there, that it exists, but I'm tired. I leave it to find in the morning and this blog, open ended.

Sunday, September 12, 2010

Day of Rest

Sunday. It's a day I've been looking forward to—because today is when I expect John, my husband, to finally return home after a long, 10-day trip.

He left for the airport directly from the school and our PPT. This was our fourth meeting and last in a long series since March to develop the IEP (Individual Education Plan) for C.S at school. After he left, he unfortunately missed the lighter exchanges, almost chit-chat, at the end. It was then that the Speech/Language specialist helped me realize one key reason C.S. may be missing so many social cues. He over-focuses on some areas and so completely misses others. From this single catalyst, multiple connections clicked into place: he focuses on hair, skin color and body shape; aha – that’s why it so distressed him when John shaved his head (he demands that he grow his hair again almost weekly); that’s why it is almost impossible for him to recognize older women (their grey hair with its similar color and texture and often length completely throws him); and so does this also mean that he doesn’t recognize faces. These sorts of thoughts, these busy minded attempts to make connections have been clickety-clacking in my brain ever since.

Add to that the daily hug awareness I’ve adopted. I’m actively trying to teach C.S. such subtle skills as how to approach someone, ask if they want a hug, what to do if they don’t and if they do, how long to hold, how tight to squeeze, how often you may hug a non-family member.

And it’s been, not only the first week of school, but also the first week of activities like Karate and preparing for Boy Scouts that resumes on Monday. As always, I am particularly vigilant when it comes to transitions.

It has been a longer than usual 10-day week.

I am relieved that, so far, everything has gone very well. But, I’m tired. Incredibly tired. And not from lack of sleep. I am just worn out from all this awareness. I’m rest deprived.

When I came home last night, all I wanted to do is loose my brain to Plants vs. Zombies. That’s a game C.S. plays. When trying to share one of his obsessions, I became addicted to it too. It’s a great way to veg-out.

But when I play now, I can hear the many ways C.S. tries to make me aware of his world and the way it works. I was surprised when he pointed out the background tunes. His favorite is the rooftop music and his second favorite is the nighttime pool for example. I had never even realized it changed. I usually tune out the music to focus on the game. I also never paid much attention to the structure of its various levels. On the other hand, C.S. congratulates my every achievement by telling me something like “Great work Mom. Now you have only one more level before the party and then you’ll be on a fog level.” I am now aware of this broader structure. And I am also impressed by my son’s fluency and finesse with the game’s every detail.

But between trying to understand his level of awareness and share my different awareness with him, I’ve had it with this incredible focus on background detail. I feel the need for a soothing Sunday ritual. But I’m not going to figure that one out today. That need will have to go unanswered or at least remain unspecific because I’ve got too much on today’s to-do list already. I’ve got to stop blogging, get some work done to earn money, help C.S. with a boy scout poster, find his uniform, pack snacks for Monday morning, etc. etc.

My silver lining: I’m married to a caring, sensitive man. He travels a lot, less frequently now than he once did. But when he returns, his time away allows him a fresh perspective and us some objectivity. If we've made progress, it'd be he who will be able to see it. And I’m looking forward to seeing him, not only because I miss him and his support terribly, but when I get a fresh horse in this race—that’s when I can finally dull my senses and get some rest.

Tuesday, September 7, 2010

Homework: Hopes and Dreams

C.S. came home with a homework assignment, for me. His teacher asked the parents to fill out a sheet describing "my hopes and dreams for my child's academic and social growth:" For my answer, I was allotted 5 lines for academic and 5 lines for social. Gooodness!! Has she no idea what she has asked of me or of who maybe? For starters, 5 lines is not nearly enough space. I've been trying to keep my posts trim, but I've got plenty to think about and apparently even more to say on the subject.

This is what I turned in:
Academic Growth: Having gone through so many tests recently, C.S. has confirmed for me what I instinctively know and witness everyday; that he is, in so many ways, an exceptionally gifted little guy. Academically, he excels in reading, math and where/when-ever his amazing spatial reasoning can come into play with a visual assist. Add to this, he loves to learn. He eats up facts and makes remarkably perceptive connections between them. He shows a talent for writing poetry. He is a gifted public speaker. He recently developed his own punctuation marks to indicate not only his intended placement of a dramatic pause but also the intended duration required to realize the most dramatic affect — that he achieved, beautifully (that his father thankfully saw, but I unfortunately missed) at 2nd grade literature night last year. It is my hope that C.S. can build upon his strengths and continue to push himself to his full potential even if that means he needs to work beyond the third grade level. It is also my hope that his peers will learn to recognize and value his skills and so discover one of the many ways C.S. so deserves their respect.

Social Growth: In some sort of karmic universal balancing act perhaps, my son's exceptional academic strengths are matched by an equally remarkable (if not more remarked upon) set of social weaknesses. Recently I have pushed hard and made it a personal goal that his social challenges be recognized and understood. Having succeeded in reinstating him to receive special services, I look forward to a school year of positive social changes for him. I have every expectation that the many caring and talented specialists now involved in his school day will succeed as they help my son overcome his social weakness and grow strong. But, distinctly separate from this is my hope that even though he may now be labeled as special needs and/or on the autism spectrum, he will receive understanding and compassion. I find my son to be endearing, charming, remarkably engaging and an unbiased champion for fairness. He is caring, loving and empathetic. And though oddly quirky, he is an absolutely wonderful individual — a trait he realizes with remarkable intention for his grade (as his recent insistence upon changing his name clearly indicates). Even while I hope to better socially integrate him, I have no desire to fundamentally change him. He is who he is. He is original. It is my dream that his peers will admire and value his wonderful uniqueness, individuality and distinctiveness among them.

Of course I loved that she assigned this. Though just three or four days into it, third grade is starting out with many positives so far. And by all indications, I'm happy to confirm what I've been told, that my son has a great teacher!

High Times

A couple of times, now that I’m out of the closet with my son’s diagnosis and being more obvious about securing understanding for him, a friend has said to me, “all kids are like that.” I heard this again at the beach yesterday.

The day so far had been perfectly carefree and relaxing. The kids swam in the sound, dug irrigated castles in the sand with a pack of other kids they had never met before but all had bonded quickly over shovels and the task before them. (I felt certain the oldest among them was an Aspie.) I got to read the Times, too much of a rarity. After a couple of hours when I began to pack up our stuff, we were all perfectly satisfied with our day at the beach. I gave DeDe and C.S. money to by a treat and off they went. The children happy, the other children friendly and inclusive, DeDe so helpful — our day had been perfect.

I had the car packed, but before we left, I got a call from a friend that they were at the neighboring beach (for which we did not have a parking permit). I wanted to stroll down for a quick hello. After we arrived, suddenly, this seemingly perfect day, got even better. I was welcomed into a friendly circle of people who freely offered cold drinks, delicious food and the opportunity to ride a jet ski (which DeDe happily accepted). The kids seemed to never tire of the playing in the sun, sand and waves and they obviously warmed immediately to the new pack of people. We ended up staying much longer. Unfortunately longer than I came prepare for. I didn’t have a towel, I didn’t have C.S.’s food. Despite the music and warm, relaxing atmosphere, apparently my over-vigilance began showing. When C.S. pulled suddenly, almost angrily, away from my friend to duck under the umbrella and I stepped in to explain, she stopped me short with what has become a now familiar friendly reminder that, “all kids are like that, not just C.S.”

She’s right. He was hot and tired and getting hungry. Any other kid in the same boat would get touchy. And she is also right that in more ways than not, my son is like every other little boy out there. But not only is he like them, there are also times when my vigilance detects definite sensory issues and autistic traits in children without a diagnosis. More and more I see little boys who are like him.

As hard as it was to leave, after five hours at the beach, it was simply time to go home. We left the beach happy and without incident. And we left the long Labor Day weekend with a pair of perfect summer days under our belt (the day before had been wonderful too). I'm starting off the short week very thankful for the summer with my children and grateful for a few absolutely wonderful friends.

Silver lining: C.S. is not overtly autistic. In more ways than not, he is like any other little boy under the sun. And I can go for days without my or my children’s friends noticing anything autistic about my son—which is also the definite downside to high functioning. He seems normal, sometimes quirky but then, when his neurological differences are more noticeable, that is also why everyone struggles to understand his inappropriateness. I know this silver lining well. And I know it is shining, blindingly beautiful but unfortunately, double-edged.

Sunday, September 5, 2010

Farewell Hugs

Hugs have become a problem. C.S. gives them too freely, too often. He hugs almost everybody, sometimes multiple times in one conversation. Sometimes too long, often too tight and even when he has just met someone, strangers may end up with this little boy wrapped around them in a loving embrace.

The first week of school, he was so excited to see everyone again. He hugged his former teacher 5 or 6 times before he could continue down the hall again. He hugged his friends, especially his wise little classmate and protector who, thankfully, is in his class this year too. And it melted every adult heart in the room when my little guy hugged his buddy because he was so genuinely thrilled to see him again. But, this excessive hugging will become a problem with his peers. It already was last year and even for some adults. Not everyone is comfortable with his hug generosity. But unfortunately, on his own, C.S. has no way to tell who does, who doesn’t, and/or just when it’d be best not to hug someone. All he knows is he loves doing it.

I realize all this of course, but there’s another side of me, the mother side of me, that cannot let go of his embrace. I might be more accepting of his hugs and his frequent, compulsive touching because I have known so many variations of it. And although there have been days where my skin is over-saturated with his touch and I actually cringe at the way he clings to me, of course I remember how difficult it used to be. I too well recall how I once struggled to hold my infant son, how he would squirm away and then press into me. I remember that I could not cradle my child—that the way I held him would be best described as wrestling.

And though, as he got older, we had finally worked out a comforting way for me to hold him — my hands pressing him tight against my chest while he pushed his head into my chin and dug his feet into my thighs — physical contact was still a battleground. Throughout his toddler years, he at times bit me, bulldozed into me or banged his head backwards into my nose and teeth. Loving him was not always so easy, at least not physically.

That his desire to get close to someone can actually be described as “touch” and “hug” still seems a wonderful milestone to me. But it has gotten out of hand. He’s a far cry from a toddler now and third graders can’t hug adults and strangers the same way Kindergarteners and even a cute first grader may get away with. We’ve got to make a change.

So after the first two days at school, when C.S. roamed the halls on a squeeze spree, his special education teacher taught him a new way to “hug.” She instructed him that from now on, he’ll hi-five as a special greeting and a double hi-five is his new “bear hug.”

That worked for a day. But C.S. missed the squeeze. So he suggested his own modification. Instead of a quick clap of hands, he wrapped his fingers into a clasp and then squeezed the other person’s hands. A fistful, but it was hardly the armful of satisfaction he once received. His new OT now stepped in with the next part of the solution — a neoprene blanket that she wrapped around him as part of his new sensory diet to deliver the deep pressure his body craves—but I’m sure it was just not the same as hugging.

So when, at the end of this first week, we visited his Social Worker [this is the therapist (more expensive financial obligation and longer drive) I decided to commit to] when he greeted her with his typical embrace, I mentioned the new hug policy at school and asked him to show her his hi-five bear hug instead. And they went into her office with a topic for the evening's discussion.

When it was my turn. She and I talked about how much I hug my child, when and why. I do hug him an awful lot. It began innocently enough. It was even later recommended as a therapy by his special pre-school teachers, physical therapists and the many books I read to understand his sensory issues better. Whenever he was overwhelmed with emotions or sensations, I calmed him down with a big squeezey hug; by holding him and rolling with him; by scratching his back, legs and head; by finding the right way to touch him. There were so many ways I delivered the many sensations he craved. And, ah-ha, yes, a number of our home therapies began with me wrapping my arms tightly around him. A hug was the comforting answer to so many things.

So now, as the therapist suggested, I will begin using other means to help my son. When he is upset or over-stimulated, I can wrap him in a heavy blanket, cocoon and swing him in the hammock or lay beanbags on his chest. But for a while I think this also means that gone are the days that I will scoop up my crying, sometimes thrashing son and hold in my arms until everything is alright, everything is alright honey, I’ve got you.

Silver Linings? Sometimes they can shine too brightly.

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