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.

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