Thursday, September 1, 2011

Charts, continued

Little by little, I'm learning more specifics about the 4th grade behavior chart from C.S. One thing is clear, it is really motivating him. The color codes are not just an end of the day review scribbled off quickly with the teacher's signature. All the children have a card on the door. Everyone started off with yellow cards. C.S. is hoping (with his typical game-player sort of ambition to level-up) to see his card move up to a new level or as he says, "I at least hope to flip up to a green. But not brown. Brown is the baddest." He is still at yellow. But his class behavior, his behavior and others, is being monitored and is constantly on his mind, in a most positive way.

Tuesday, August 30, 2011

PATs and Charts

PATs: We're trying something new in our routine. I've dubbed it Positive Attitude Training, or PATs for short. I'm asking the children to tell us three positive attributes about themselves at the breakfast table. Later, at the dinner table, I ask them to report three good things they did or accomplished plus one positive act they recognized that someone else at the table did that day. So far it is working out great. Not only does it give us a topic of conversation, it really seems to have made a difference in their daily attitude.

Charts: C.S. came home with a new behavior chart — but it's not just for him, it is for the ENTIRE 4th grade. Wow. And I like it, very much. (I'm so impressed with this teacher.) No smiley faces and emoticons this year. In his class planner, his teacher signs off on the day's assignments. The teacher's signature will now be in a color code to signify how my child behaved in class. Yesterday, all the students began with a yellow signature and will move up or down the color list based on his/her behavior.

Here's a list of what each color signifies:
Purple Signature: Your child had an outstanding day!
Green Signature: Your child had a good day.
Yellow Signature: Your child had an average day.
Red Signature: Your child had 2 warnings regarding his/her behavior
Orange Signature: Your child had a "time-out" in another classroom today or had to walk perimeters around the field at recess.
Blue Signature: Your child had a phone call home today due to inappropriate behavior.
Brown Signature: Your child had an office referral for his/her behavior today.

I'm not certain if they intend to have an additional behavior chart for C.S., but I think it will help him a great deal to be in a school culture where everyone has one, not just him.

I'm loving our Move and the many changes that have come with it!

Silver Lining: I have a feeling that C.S.'s teacher has committed herself to being a change factor in this world. I'm glad to have found ourselves in her circle of influence.

Thursday, August 25, 2011

First Day of School

Throughout this huge transition that is moving to a new house in a new state and with a month long gap between our closings, it is no surprise that my son has had frequent meltdowns. Such a disruptive move would be tough on anyone!

To say that much has happened since my last post is a HUGE understatement. My family has rarely spent so much time with C.S. nor at a time when he was so completely off kilter ... it has been a struggle and it has been an illuminating experience for all of us.

Of course, my concern from the beginning has been the move to a new school, especially for my son:
How might I secure the right fit, the right teacher for him?
How would I be able to download all the various strategies we had developed over the past year?
Would the new school pick up our IEP?
Would we need to have a new PPT?
Would I have to fight my way through a bureaucratic, budget watch dog like I had to before?
Would we be at risk of losing services?
Would he make friends?

ALL these fears are more were almost completely (I'll always be on alert, let's face it) laid to rest. The new school has been SO VERY RESPONSIVE! After delivering his IEP and explaining my concerns, I met with the school teacher and his "Exceptional Children Case Manager" to present his testing and various other paperwork I've collected over the past eight years. The school Speech Pathologist and EC Teacher joined us. And although they did, in short, explain that since his testing was over a year old, they would have to re-test him. And that after testing, they would conduct a Deck-1 which I understand is this district's version of a PPT. Even with news that would have filled me with trepidation before, the information was delivered with such warm and genuine reassurances that they would take care of my son, that he would receive services...I am not concerned. I feel so incredibly good.

What sealed it I guess was when I pointed out his BASC scores and the increases we had seen when he was dropped from services after Kindergarten. My intention was to explain I would simply not allow him to lose services again...but I didn't even have to go there. The Case Manager reviewed the scores and then puzzled, asked me, "And why was he dropped from receiving services?" EXACTLY... I trust this school system has no intention of playing his academic strengths against him.

I just received an email from the school speech pathologist, just a few hours after his day began. She just wanted me to know that his first day was going well. She checked in on the classroom, he was "sitting at his desk attending to the teacher." She followed that with, "His class walked by my room a few minutes ago and they all stopped to say Hi [C.S.] had a big smile on his face! I asked how his day was going and he said "just okay" (LOL) but Mrs. Moore gave me a thumbs up. I am sure this is a big change for him and will take him a little time to adjust but I have no doubt that he will have a great year!"

I couldn't be more pleased!

What I find so interesting is that I was warned by well-meaning folks attending to my naivité as a new-comer, not to send my son to this school. Evidently, it has a large Hispanic population. It was a bias we had noticed but not been able to put our finger on from the very beginning.

Maybe we UnOther Ones can do our part to help spread a little tolerance and understanding!

Silver Lining: I may not need to go in search of one again.


Wednesday, July 27, 2011

Pretend You Can't Pretend

Pretend you can't pretend. What would that be like?

Today, we met plenty of everyday Spectrum challenges as we engaged in all sorts of attempts to prevent them. I took the children to see the house we are in the process of buying and we drove through the city that will become their new home town. Going to the house is another story altogether of problems with expectations, predictions and transitions. What I'm mulling over most tonight though was not how C.S. ran away and hid right as we introduced him to the homeowner, or how he flapped through the formal rooms obviously excited, or how he stomped his feet and wailed in the basement crying to go to his real home obviously confused and disappointed ... what stood out sharpest today was the ride back home as I listened to my children "pretending" in the back seat of the car.

We had stopped for an early dinner a bit of a break before the hour drive back to my father's house where we've been staying. My step mother drove, my father sat in the passenger seat and I was in the back with the children. We ate at Cracker Barrel. While there DeDe spent some birthday money to purchase a Webkinz and Nana got a smaller one for C.S. so he wouldn't be disappointed.

These two Webkinz kept them thankfully engaged and distracted the whole way home. They named and assigned genders to their toys. They imagined social situations for them. And then, both my children, instead of developing voices for these characters or simply engaging with one another, they instead told, they commanded each other what to pretend. It went something like this:

DeDe: Pretend Nala just got a huge trophy and is really excited.

C.S.: And pretend Leo got one too and it's gold.

DeDe: Pretend they are on a platform and they are showing it to a big crowd. And pretend yours gives the trophy to Nala.

C.S. Pretend they're going to race again in a big finale. And pretend Leo wins!

Etc., etc, etc. The command "Pretend..." preceded every sentence for half an hour!

Then I suggested they try a new way to pretend — that instead of commanding each other what to imagine, that they take this scenario and simply say what they think their Webkinz would say and how they would say it.

For example, Nala could say: "Look at this trophy! It's huge! I've never gotten one so big and beautiful. I'm so excited about today's win."

And Leo could respond by saying, "And I got one too for my race. I think this could be real gold. Do you think your's is gold too?"

They tried it out. I kept having to remind them not to say "pretend..." but to just start speaking in character. It took a bit, but they were getting the hang of it. For another 15-20 minutes they played under my direction of less direction. It was an extremely interesting lesson for all of us. Obviously these are challenges BOTH of them, and I, are facing.

Silver Lining: Pretending to pretend is not as easy as one might think. But with extended family there to take the helm, Mom can take the back seat and we can learn how to pretend. Almost anything can be taught, really.

Thursday, July 21, 2011

A Birthday and Symbiosis

We're celebrating DeDe's birthday today. Had a little party for her. Couldn't have chosen a better group of girls, younger brothers and amazing mothers to do it with either.

Other than a traditional party and dinner, my husband and I observe a somewhat intimate ritual in celebration of my daughter's birth — we tick through two days recalling what we were doing at that moment so many years ago when our first born arrived through me into this world. By nighttime, we'll mark some indistinct hour that DeDe was brought back to me. This year, I confessed to my daughter that after she was born, after I fed her and then the hospital me, I was so exhausted after 18 hours of hard, pitocin induced labor and 24 hours without sleep, that I sent her to the nursery instead of having her room in with me. I then described how I later woke at some unmemorable hour to the sound of a piercing wail resounding through the halls of the hospital that grew louder until a visibly shaken nurse entered my room with my crying infant daughter in her arms. But as she stepped into the room, suddenly my DeDe was perfectly content. The nurse apologized profusely. "She was crying, we couldn't get her to stop, honestly. She's been crying non-stop until now. And she was so loud. We wouldn't wake you but the other babies couldn't sleep." But DeDe just gazed at me, a portrait of innocence and perfectly at peace. Startled by the sudden change, the nurse commented before she left, "Well, she's got strong lungs and this little firecracker knows what she wants."

I kept her close the rest of the night and every day since.

Recalling this so soon after recent meltdowns, not only the children's but a surprising one of my own, I've been thinking about the strong bond I share with my family. It is pretty intense. I've always remarked that my children catch my moods — they really do, always have. But now I'm beginning to wander if I don't catch theirs, too. I've only now realized how ours is a busy two-way street.

We visited Stone Barns Agricultural Center this past weekend, too. (I had hoped to write about our visit, but ADD and PDD always have surprises and other lessons in store for me.) Part of our exciting tour of the farm was a visit by the bee hives. As our guide was explaining bee communities, she counseled us to think of them not as a group of individuals but of the hive as a single organism. In many ways, so too are me and my children.

Silver Lining: My children don't go it alone. And, I wouldn't want them to.

Tuesday, July 19, 2011

It Hit

"I'm melting!"

C.S. had a huge meltdown the other night, the type of which we haven't seen in years. But he's not the only one. I had mine too, this morning. Who wouldn't. After the CT closing was delayed for the second time in a week, after tending to a sick son and a trip to the dentist for my cracked tooth, after we passed on the house we had hoped to purchase after inspections revealed more problems than we expected (and we expected a lot)...after all that...I added one thing too many. I know what put me over the edge, but it was something I was still determined to do because of its long term benefits. Of course that simply meant that my reaction was delayed until my determination was not so strong nor my defenses fortified. And so ... Mama had a melt down in the car in the middle of a traffic jam on the way to camp.

Silver Lining: Hey, I was prepared for it. I knew it was coming. I took a cue from C.S.'s strategies. Count something. Count the cars. Count stripes. Even if counting dashes in the center line seems silly, count down to calm. The means to a better end. And then turn around, literally, everything needs to head in a new direction. We retreated. How I wish I had ruby slippers to transform me "home" and out of the vortex. But if without slippers, I can drive there too. And so we didn't go to camp this morning, but we did what we all could do.

Tuesday, July 12, 2011

Short vs Long Test results

Change that — the rash IS strep. The quickie test was negative, but the overnight test came back positive. And unfortunately overnight became over-the-weekend. His daily intake of pills now includes penicillian.

We're in chaos here — packing has evolved into stacking and stacking into official moving. Due to a steep and narrow driveway, we can only receive one POD at a time and so, that means we'll have to load one ourselves. The movers will take the other. It is HARD work especially with kids underfoot. Thankfully, my mother-in-law came to help out, HOW we need family at times like these. I am so grateful that she came to help out — and being closer to family is one of our major reasons for moving.

Friends are helping out too — we have dinner invitations for 2 nights this week. And to help our transition go more smoothly, our neighbors offered their whole house to us. This will help tremendously with the upcoming transition. At least I think it is a good plan: rather than lose the house, their summer and their Dad all in one day, I will stay in this state after the PODs pull out. I'll spend a week focusing on the kids and summer fun (something we haven't been doing this week at ALL). We'll celebrate DeDe's birthday with her friends. They'll go to Apple Camp (a great freebie I'm hoping will be ideal for both kids but especially my PDD-boy). We'll swim for a day at the beach. And then, we'll drive to Grandaddy and Nana's in NC.

My husband will have to stay behind to work at the soon-to-be former job through the end of the month. And then, we'll be together again by mid-August.

Silver Lining: I've tried hard to manage this move with autism in mind. We've hit a few snags; sickness, rescheduling — but so far, it seems best laid plans are holding the children up pretty well. That's the quick test though isn't it. We'll see how it turn out in the long term — but I have every confidence that being closer to family and back in an area I consider my home turf, this move should turn out to be hugely positive lifestyle adjustment.

Thursday, July 7, 2011

Pack Rash

Yesterday, C.S. konked out cold at 11:30 a.m. for what became a 3+ hour nap. I must have checked on him twenty times and then, kept on packing, wrapping and packing. The quiet, the uninterrupted productivity, the strange boredom of three quiet hours with no running script babbling in the background, no child pacing around the house, through the doors that constantly need closing, was unnerving — something was definitely wrong.

At bath time, I discovered that a rash had blossomed all over his torso, upper arms and upper legs. He hadn't eaten anything out of the ordinary. He wasn't itchy. There was no fever. With a rash so wide spread over his entire body, it seemed the best solution would be to give him Benedryl. I had given him cold medicine once before, as an infant. Then, he did not fall peacefully asleep, but became agitated like I had never seen. Even though I rely heavily upon Benedryl myself, I've avoided almost all medications like this for him ever since.

The nurse at our practice is wonderful. She was very reassuring. She cautioned that it could be strep, but that it might be a virus and recommended that we see the doctor first thing in the morning. Fortunately this morning's test proved negative for strep. If it's anything, I'd say the cause is most certainly stress.

Silver Lining: It wasn't serious, he got three hour nap and I got a great deal of packing done. And today, even though I lost valuable time going to the doctor's office, a friend came by, whisked my kids away to her house, left them with her daughter as baby sitter and returned to pack 5 boxes of fragiles for me while I got some work done for a client. Wow. A friend who recognizes and responds to your need is a friend indeed!

Tuesday, July 5, 2011

Hairy Eyeball

Made a loooong list of errands to do with the kids today and in my best attempt to help them through this moving tsunami that will eventually carry us to North Carolina, I drew pictures and big check boxes beside each action item and let them tick off To Dos to Dones as we pushed along. After picking up a carload of packing materials and boxes (and waiting patiently in the understaffed U-Haul store) we ended up having to drive a half hour farther than originally planned to drop something off at my husband's office that he had forgotten. Being that far down I-95, I squeezed in another detour for work. Realizing I was now pushing it on a hot day, I then treated the kids to lunch at a nice cafĂ© where we met not only a friend but also the family that camped beside us recently on our vacation. It was exciting — in other words, despite friends and mango sorbet, we were still precariously close to sensory overload and it was showing.

And then I saw her. Sitting in a corner bench, a weathered woman was intently focusing beady eyes on me, trying her scowling best to pierce my attention and deliver her sharpest look of displeasure and judgement. I ignored her of course. Dissatisfied but hardly deterred, she delivered a sugary compliment to a compliant little golden haired girl sitting beside her telling this child how well behaved she was as she flashed dramatically contrasting glares — as if I might have failed to notice the difference in the way she regarded this child from the way she had mine.

I was so seriously tempted to address Hairy Eyeball right then and there. I might walk up and say, "Hey, Hairy Eyeball, yes, I see you. And I just wanted to say that you really should do something about that wrinkled skin of yours. It is nearly sagging off your face. Don't you know that young faces are so much more popular and pleasant to look at, I don't know why you let yourself grow old — and if you think that judgement is unfair, then maybe you might reconsider scowling about my son, because that's what high-functioning autism looks like." But I didn't.

Silver Lining: My friends were kind, understanding and welcoming. One even offered to take the children for me. And that's what matters. I have plenty of reasons to smile and not scowl, at anyone, even the old Hairy Eyeball. And honestly, it is the friends standing between me and her that truly do make all the difference.

Monday, July 4, 2011

Pursuit of Happiness

Happy Birthday America! Independence is on my brain. As well as the need to write a few thank-yous to friends who brought hostess gifts or going away presents to our farewell party yesterday. I've written most of those, quickly, as emails or on Facebook walls (how my mother would cringe) ... but there are a few I've yet to write and thats how these two thoughts, independence/dependence and gratitude, come together.

Today, I get to write a very different sort of post about my son's experience at school. It is more like those I read so long ago at MOM-NOS — about how a wonderful and caring team of specialists came together, if not completely understanding my son's needs, dedicated to discover how best to meet them so that he might attend school while also enjoying life, liberty and the pursuit of happiness.

On the last day of school, I watched DeDe graduate and then, Ms. Glee, (my son's go-to when he needs "happy talk" to dispel his anxiety and frustrations) had gathered together a booklet of kind farewell messages from the entire team which she then presented to him and to me along with framed photos from a recent field day and more. It was an adorable keepsake. But truly what she gave me was an even greater gift, the feeling that they sincerely cared about him, that they could see through his struggles and appreciate this charming little guy and maybe miss him. I felt that, at least for the span of a school year, we had been in it together, helping C.S. navigate this world, teaching him to comprehend or at least translate social situations, manage his emotions, access his remarkable strengths and generally speaking, pursue happiness. I will not forget that we depended heavily upon these women to gain the necessary skills to enjoy life, independently. Thank you.

Red, White and Blue lining: I hope that you too are enjoying life, liberty and the pursuit of happiness!

Saturday, July 2, 2011

Underwater

We're moving. And although my husband and I have spent months slowly and patiently preparing, explaining and generally selling the children on the whole idea — and we have succeeded because they are looking forward to the "adventure" — no one could escape the rising tide. With a closing date just 2 weeks away, we are all feeling very much underwater and at risk of drowning beneath everything that needs to happen.

But, while I've been expecting C.S. to go under first, DeDe suffers from anxiety, too. And last night, it was DeDe who was seriously floundering under all the pressure. And so I had renewed incentive to make a calendar, a visual organizer of sorts for the move, a suggestion I found at this most helpful link



DeDe was very excited about it. She helped me draw some of the pictures and she colored them all in. This simple visual organizer helped her make just a little more sense of all that was going on and most certainly turned her mood around. C.S. seemed to like it for about two seconds, but the game he was playing on his iPad was much more interesting at the moment.

Silver Lining: There are so many resources available on the internet to help us parents these days! It will be hard, but we won't drown — other parents have thrown out safety rings all along the way.

Monday, June 20, 2011

Out of the Ordinary

My son thrives on routine, on structured days when he knows exactly what to expect and so knows with certainty what he needs to do to meet those expectations. It may sound like a simple request, but it is something that can be exceedingly difficult to deliver.

As the school year winds down to a close, the school day is increasingly interrupted with field trips, award ceremonies and celebrations. These are things children typically look forward to — typical children that is. The loss of structure leaves a void that makes a day difficult for C.S. to manage.

The end of this year has become even more tumultuous than we would ordinarily expect. We plan to move very soon. We put our house on the market a month ago. We accepted an offer on Thursday, signed paperwork on Friday, put an offer on an out-of-state house and today, Monday, the last full day of school, we've had inspections and continued negotiations and more. In short, our home life has been less than routine, too. All of this is intended to offer our children better quality of life, but for the moment, it is a good bit worse.

And so yes, I've been on pins and needles expecting a complete break down or tantrum at any moment. I've spoken to the teachers, given them a heads up, reviewed coping strategies with my son, everything I know to do. And C.S. is managing remarkably well, considering. But everything is relative, isn't it.

I got a call from the school today. They had a school-wide assembly for award ceremonies, in the gym. The space is loud. It echoes and so is disorienting. Children, peers were being recognized and presented awards with all the anxiety provoking anticipation awards can bring. C.S. requested a break almost as soon as he sat down. I'm not surprised.

But at some point, despite breaks and attempted strategies, he obviously became more overwhelmed than he could manage. The school psychiatrist called to report that C.S. said "I just want to kill myself." They soothed, they calmed, they asked him to explain. He softened it by saying he had made a mistake, that he "just wanted to hurt himself." I suppose the psychiatrist thought that would be reassuring. It wasn't.

My son has difficulty managing his emotions. I know too well he has it in him to lose control. I understand that it is quite common for autistic children to become violent when frustrated or provoked. It is something I have witnessed — a thankfully rare occurrence, but that terrible tantrum, his tightened fists, and his wail has imprinted upon me the most unforgettable images and sensations. As my son grows older, stronger and capable of so many more things, what he might do should he lose control frightens me.

He has never hurt anyone. He has never hurt himself. He has also never said it quite this way either. At the beginning of last school year, at our family breaking point, what he said was "I just wish I was dead." It was this death wish that encouraged me and emboldened me to make a tremendous change. I've spent almost 2 years now enacting so many changes. But here he is saying, "I want to kill myself."

Do I believe him? Do I take this statement seriously? Or is he just "saying something" as I've heard the school psychiatrist suggest? I couldn't help but notice that she backed away from being so dismissive this year.

But yes, what he said, I take very seriously, with immense gravity. After all, after everything that we have done, after the strategies and preventions and crutches we have propped him up with, that we can still arrive at a breaking point and end up there — it is deeply upsetting.

Silver Lining: The school called. They took him seriously this time. There was a special educator available to address his needs immediately. I was able to come to him just as quickly. Together, we turned his day around. And then, he participated FULLY in a class party that involved games, relay races, water balloon tosses and then a water squirter melee. He lost a relay, got his clothes wet — and he enjoyed every last minute of it! For a kid with sensory issues like him, this was nothing shy of ASTOUNDING to me!!

Comment Haters

One of my goals for the year has been to get published. Specifically two books — "The EllaZoo," a collection of poems inspired by my growing daughter and "The Other Woman," a memoir in progress. To get published these days, a successful query letter must show not only that you have written a worthy book, but also that you are a "proved" author. Those who have already published, have built an audience through their careers or through successful blogs are more likely to capture an agent's attention than somebody who has merely written a good book.

In an effort to get published, I posted a number of stories on Open.Salon.com I had moderate success. At least half of these were selected as Editor's Picks. But my real test would be to jump from Open.Salon to the Salon.com pages proper.

When Salon.com posted an open call for "Mortifying Disclosures" it seemed made for me. As a family on the spectrum, we have generated ample material for such moments of extreme public embarrassment. I felt certain this would be the ideal opportunity to make that jump.

I submitted a story,"Positively Pissed Off" and it did. The editors contacted me with a request to cross post it to Salon.com It would be a cover story over the weekend, later to transfer to the Life pages.

The editors warned me in advance that comments could get a little rough. I was not surprised. As a parent of a high-functioning child on the spectrum, I know this territory better than most. After all, I am and my child is the type whose atypical acts likely receive more judgement and harsh commentary than understanding.

It was as expected. There were no shortage of Comment Haters: those who blamed autism on bad parenting, or coddling or a not tough-enough love; who viewed GI intolerances as mere childish capriciousness; who were more concerned about the neglect the dog received conjecturing a lifetime of abuse from a one-line mention; whose reactions openly seethed.

But there was also plenty of support and understanding. There were those who said it resonated with them. A few sent personal messages to say, thank you. That meant a great deal to me.

So, to those who asked, what was the point of this story, and plenty did, it was to offer that vivid moment of sympatico and empathy for those that a story like this might resonate. To describe that once you face the breaking point, even if it seems to come publicly, there can be a feeling of personal triumph on the other end. The point is to push through the comment haters and keep going anyway.

Silver Lining: It was a very public disclosure. I think it really did mean something or make a difference for other stressed-out Moms who read it. It brought the Comment Haters out in the open for all to see the sort of close-minded, ill-informed, seething judgement people load onto children with autism. And of course, I am now, officially, published!

Thursday, June 16, 2011

New Neighbor

Our longtime neighbor Pat was excited to tell us that the new neighbor had moved in and that he had an opportunity to meet her. "She has a daughter, fourteen years old." At this point his 7-year old daughter chimed in, "and she has a swing set!"

A fourteen year old girl with a swing set erected in the first week? This most certainly captured my attention.

While out on a family bike ride around the neighborhood (and out of the house while I cooked dinner) my husband and children found their opportunity to meet the new neighbors. My DeDe seemed thrilled. She had already set a date to ride bikes together with Jen, seemingly an instant friend despite the three year age difference.

They have played almost every day since. Riding bikes, coloring in the back yard, today they began plotting to make a movie. It has been interesting to watch how quickly my daughter has gravitated to this new girl, a real first. And yes, I most certainly noticed that this kind and outgoing gal had a strikingly familiar set of noticeably studied social skills.

I got my chance to meet the Mom today. We chatted about gardens and the plans she had for hers when she made the slightest comment that she had found the perfect spot to set the swing in the front yard which they had erected immediately because Jen "benefits from constant motion." I suppose I was a bit bold when I replied, "Yeah, I wondered if it might be for sensory needs. My son is a sensory seeking little guy." I think she was a bit surprised at first. But when C.S. wandered over, stepping on every stone, tripping atop her low knee wall and then hugging her, she relaxed obviously familiar with this territory. Our conversation could have continued comfortably for hours, but I had to go back home to make a GF/CF dinner. I have a feeling we'll pick up somewhere where we left off very soon, without missing a beat.

We have a new neighbor, one that makes this neighborhood feel more like a community of mine than it ever has before.

Silver Lining: Play. Regular unscripted, impromtu summer play for the kids. And chit chat about the mommy decisions we make as we struggle to just raise our children. That's the July I am very much looking forward to!!!

Monday, May 30, 2011

Little Things Can Make a BIG Difference


This is the tiny little blue pill that has made a big difference. When my son's doctor prescribed it, she explained that Abilify was not developed as a treatment for autism, but that it seemed to help in some cases. What we were initiating was possibly a series of trial and error, taking a stab in the dark. As she explained, what works and what doesn't is difficult to predict because autistic children simply have a brain chemistry that works differently.

I didn't fully appreciate her explanation or her subsequent elation that we hit the mark so squarely with our first attempt — that is until now.

Last week, after being on the new medication for over 3 weeks, and as planned, I took away the little blue pill. On the very first day, when I picked him up for school, he crashed. I saw it on his face the moment he entered the room. When I asked what was wrong, he wailed — that mournful deep sound he has when he is disappointed beyond control. He explained, he was not able to buy a book he wanted at the book fair. I soothed, he calmed but then a wail welled up again, and again, uncontrollably. He too seemed to realize that it was more than a book. As he said, "I don't know why I feel like I do. I don't know why I can't stop crying. Something's just wrong. I don't feel right."

The next day at school was just as bad. I got a call from the social worker. Without any insight as to the timing of our transition, she had noticed the remarkable change in C.S.'s ability to control his frustration. And of course she reported that he was having a very difficult day. Unable to myself and even though pick-up was in less than two hours, I dispatched my husband to deliver the little blue pill to our son at school right away.

Silver Lining: I most certainly appreciate our success to its fullest now! The little blue pill makes a big difference. It protects my son's happiness. Any mother will tell you how invaluable something like that is. And so, yesterday, the kids and I rode six laps around our neighborhood loop on our bicycles. Vigorous regular exercise is our solution to the weight gain now. As for medication, we'll stick with that little blue pill, thank you!

Monday, May 23, 2011

A Mama on a Mission

During a meeting today discussing marketing strategies, as I preached the need to remain "on message" or essentially to develop a mission statement — I realized, that what PDD and ADD, what these diagnoses have led my family to, is just that — a need for a clear mission statement.

My husband and I began our family as most couples. We eagerly watched as our incredible infants developed into toddlers. We moved forward expecting growth as a matter of course. Even when our son seemed not to understand us, when we realized he communicated almost entirely in silence; when we discovered him sleeping inside the case and beneath his pillow on a regular basis; when he no longer made eye contact with us; we did little more than turn to our friends and family for the typical parenting insights we thought we needed. It was a model that quickly failed.

It was at a breaking point that I left my salaried job. Then, with an ambition I once devoted to my career, I began to focus on their needs and my parenting approach abruptly changed, but not by design, just as a by-product of a desperate decision to change something. I was largely rudderless. Instinctively and over time I guess, I began to focus on them as a unique product, as my small enterprise in need of a competitive advantage. Of course, at the start, this was not my thought at all. At the time, I simply wanted to make myself more available to my children. I intended to support them and fight for them. I might have realized I was "a woman on a mission," true, but it has taken me this long to realize that what I needed was to create that essential ingredient I so often preached to even the smallest start-up businesses — a solid mission statement.

And so, that's my task. Having just realized it, I haven't penned the perfect statement yet. A good one takes a concentrated effort to create. But I think it will include these key ideas:
• make happiness a priority
• develop strategies to reach at least calm when happiness seems lost
• reduce anxiety
• realize how one's behavior, expected or unexpected, affects others
• value others
• practice tolerance
• act, perform and approach problems as a family
• know how to deal effectively with unhappy or disgruntled people

Silver Lining: We are working the problem, we really are. Our determination and focus have turned a bad situation into far far better. But my husband and I recently made the decision to truly commit to these beliefs at a level we have not before. I am glad to have realized that what I really need is to practice what I preach.

Sunday, May 15, 2011

Big Gains

Well, I can't say enough for medication. As I've noted before, 2 teensy mgs have made a big difference around here.

In addition to adding to his general calm, the medication also stimulated C.S.'s appetite — not a bad thing. But surprisingly, C.S. has become self-conscious about his weight gain — he's added 12 pounds since the start of school, so it is fairly significant. I don't think anyone has said anything to him, I know we haven't. Still, he's decided he is on a diet and he's taking his decision seriously — he asked us to buy only turkey bacon and no pork bacon; he checks the calorie count on all food labels; he is constantly commenting on the health benefits or detractions of various foods; and he welcomes our push to move him off training wheels as "his exercise." (He did that too this month. He's 9 years old and is finally off training wheels and riding a big boy bike.)

Since the pounds have come on quickly, it seems 2 mgs is a bit too teensy these days. His anxiety began to creep higher and we were reminded all over again what life used to be like.

And so, we are exploring switching to a new medication. I'm told it tastes HORRIBLE! But C.S. was able to take it, literally. And so, rather than increase his dose of Abilify, we've added a dose of Saphris to it. If we see improvement, then we'll move off the old onto a full dose of the new. We've seen improvements already. A return to the new norm and I can't say enough.

So far, C.S. has been able to handle the death of 2 goldfish, a huge change in routine at home, the tossing of a number of toys — all within one week. This amount of change is unprecedented and it has amazed me.

Silver Lining: If anyone needs to be on a diet, it's me. But right now, I'm enjoying the feeling of a plush and happy family! We're fat and happy and I wouldn't change it for anything!

Tuesday, May 3, 2011

Annual Review

I have a PPT this afternoon for C.S. I'm never quite sure what to expect, exactly what level of vigilance is appropriate.

This I am told, is not one of those critical junctures where we're likely to lose services. The one to be worried about will be the triennial review, 2 years from now, when he prepares to transition to middle school. That is what a friend of mine faced last week. She is an OT. She works with special needs children in the school system and she has so much more means than the typical parent to advocate for her daughter and yet, she left her PPT having lost the services she's convinced her daughter depends upon for success and happiness. I feel for them.

Of course, I started to worry after I spoke to her. I requested my son's reports so that I could review them prior to today's meeting. I was prepared to read up on a new law that apparently was recently enacted and affects who can receive special education. But the speech therapist reassured me that today's meeting will be routine. That I need not worry. There are no psycho-education testing or evaluations to review. Just his progress and a draft IEP. And Mrs. Wall won't be there either, as we had requested.

So, I'm trying not to get anxious about it. But, at the very least, if I can't do anything else, I will always worry. As I look back over this blog of mine, I realize just how constant my advocacy is. How much I deal with every day. This year has made a difference.

Friday, April 29, 2011

When the Wig Falls Off

A city generally benefits from a few flamboyants and in this way, my hometown of Lenoir, NC, was especially fortunate. A city of only about 17,000, Lenoir made a welcome home to all sorts of eccentrics. A typical example was Sadie, a revered Southern lady who’s eyesight began failing long before anyone could summon the courage to suggest she stop driving. But we all recognized her car and so drivers simply pulled to the shoulder as she drove straight down the middle, on top of the yellow line. But of these many fantastic souls, there was one in particular who loomed especially large — Willard.

Seeing Willard was something. Something to talk about and most certainly to be remembered. When he showed up, he could be just about anything — a Convict, General Patton, Wonder Woman — and anywhere — atop a billboard with his red Superman Cape flapping in the wind or at the local movie theater disguised, just as ET on the screen, in a hooded parka and gloves, this despite the sweltering heat of a Southern summer. Willard was, as I heard it described so often, “Diff’rent.”

Willard’s mother used to make his costumes for him. These were wonderful and included crafty renditions of Elvis, Tarzan, an Indian Chief and more. He paraded them around town in a slow stroll along Harper Avenue or through the aisles of the local drug store. And there was a time he was married and his wife, right by his side, joined in, dressed for example as Tonto to his Lone Ranger. But even when he wasn’t in costume, Willard was a welcome site. When he showed up at the local pool, kids would swarm around him and he’d join in games of shark because he was so like a kid, too. I no longer live in Lenoir, but in the years since, I have been especially proud to know that I came from a city that most assuredly found a welcome place in the community for all sorts, Willard being the most extreme example of our open arms.

A few months ago, I posted a question about Willard on my Facebook page. It seemed obvious, from my friend’s responses, I’m not the only one with a fond memory of him. People replied with tales of their own Willard-sightings, added links to songs written about him and from those who still lived in or near Lenoir, came a few disappointing updates. Willard is 65 years old now. His wife hasn’t been seen for some time. I’m sure his mother passed away years ago and I’ve been told it shows in his costumes. They are not nearly as crafty and charming as the ones I remember. These days, he dresses mostly in bad drag with ripped fishnet hose and ratty wigs.

Willard made the local’s Facebook walls again this week. A high school classmate posted an article that reported Willard had been hit by a car on April 25. According to the WBTV story. “It is unclear what type of costume, if any, [Willard] Blevins was wearing when this latest incident occurred, but the highway patrol says he was wearing a wig which fell off after he was hit.” It’s an odd detail to include in such a report, but it says everything about the man’s character. I’m sure it frightened the driver who was found not at fault. Willard apparently stepped in front of her station wagon. It is truly unfortunate. Especially since this is not the first time he’s been in such an accident. And unfortunately, this incident left him with serious head trauma and he “was taken to Carolinas Medical Center in Charlotte where he was still listed in serious condition on Monday.”

I’m not certain what will happen to Willard. He no longer has any relatives to care for him. And let’s face it; in the late 1990s, he spent time in jail after being charged with indecent liberties with a minor. So he’s a man with a record now. That makes him much less endearing to the town.

I don’t have any photos of Willard, in his hey day or otherwise. I do have a photo my daughter insisted I take of her outside Central Park with some guy dressed as the Statue of Liberty that I took with my camera and still dropped the suggested $2.50 into his bucket for the privilege. Such street performers are in countless photo albums, not just mine, and they’re complete strangers. But I knew Willard. He has a much more vivid and dimensional place in my memory and I never paid him a dime. He never asked for money. He was not a street performer, just a small town crazy. All he seemed to want was our attention. I think there was a time we used to give him much more of it.

I sincerely hope Willard recovers. But if he does, what would he return home to? I’d hate to see Willard become a ward of the state, housed in an institution. Ideally, unrealistically perhaps, I’d like to think that once recovered, an aid might help him select a decent costume and assist him to safely stroll the sidewalks so he could receive a few welcome gawks but safely off the streets. And then maybe he could be Superman once again.

Silver Lining: I read a lot about autism, from books and blogs and opinion. It is an understatement to say that opinions vary. One of my personal litmus tests is to see if the belief, the recommendation, in question would pass the mustard from a perspective outside the spectrum. And so, I have to ask myself, do I really believe people need to understand and modify their expectations to allow for my son's odd behaviors? I set Willard up as an example to myself, of a clearly diagnosable child grown old. I of course have no insight as to what his diagnosis might be, but clearly he was odd. But, I believe, that he found "a welcome place in his community" made my community, in my eyes, a great place. But I believe things changed. And they changed, unfortunately, right when he lost the support of those who best understood him and worked hard to help him fit in. That community is a very different one today.

Could I imagine me, or my children, in his place? Yes. Who knows what direction my Little Boob Man might take if I am not there to suggest he control his impulses? If he continues to grab breasts ten years from now, he could very well be charged with "indecent liberties."

Ideally, I do think our communities have a moral obligation to support such innocent eccentrics, especially when their support systems die off. And not just to benefit the individual, but for the greater good. If offered continued support, perhaps such sad declines could be avoided. The hard part is how to recognize and act on it. And so I also posted this story on Salon.com and hope to spread a little awareness for tolerance outside of the blue glow of autism

Monday, April 25, 2011

No-Surprise Birthday



Number 9 came as no surprise — which is exactly how C.S. likes it.

On any typical day, his anxiety can kick in pretty quickly but as he was looking forward to today, his birthday and this year, arriving close not only to spring break but also Easter celebrations, his anxiety was revving and grinding between nervous low and high gears. And so, l was impressed when last night he could tell us what he wanted most for his birthday — No Surprises. And so, together with us, he planned it. This morning, we began dutifully following his suggestions.

We did not wake him up. But once he was awake, I made his favorite birthday breakfast, banana pancakes (GF/CF of course).

We skipped early orchestra practice. After a week away, it was the first day back to school, and he just didn't want to rush his morning...and so we didn't. We allowed him to take the transition back to school as easily as he could.

We packed goodie bags to give to classmates as part of an in-class celebration, but my husband walked in with him to support him as he explained his "no-surpise birthday" wishes to the teacher. C.S. ran ahead and beat him to the conversation, he was that eager to have either the reassurances or dispense with the business — who knows, but he took care of it quickly.

I can only hope the rest is going well. The first day back from vacation can be hard for him. He doesn't fit comfortably into his routine any more it seems and after spending so much time with family, he misses us.

And of course, there was all that sugar this weekend. One of these holidays, I will follow through with my vow to ban all the candy once and for all. It just seems to make difficult days even harder for him. Easter Sunday was one of those. I don't know if it was the too-early-rise with morning expectations of his Easter basket, unexpected huge crowds at church (I should have thought to prepare him for that, oops) or the sugar that over-shadowed his healthy breakfast or who knows what ... but Easter Sunday was a very Autie-day for us. That's another story, for another blog post I suppose.

I've been away from the blog for a while, but I'm back now with a week full of events to process, silver linings to collect and moments to inspect — still my first order of business on this Monday is to un-surprise my sweet C.S., for his special day, his 9th birthday.

Silver Lining: I celebrate my son everyday, but especially today. And honestly, despite the trials with extreme GI intolerances, sensory, auditory processing and all-round autism disorders, I wouldn't change a thing. He has taught me so much. He has lead me into new territory and to new understanding. Nine years ago, on that day I can so vividly recall, it was something I never expected from my infant son — that from that day forward it would be he that would be the teacher. But now that he is 9, it is time to stop being surprised by this unexpected role reversal and just do what I can to help him understand what, from my experience, he might expect.

Sunday, April 10, 2011

Apples don't fall far...

C.S. looks a lot like me. He has my brown hair, freckles, big eyes and, in general, a spitting-image arrangement of facial features.

Somehow, we parents are compelled to trace and even claim family traits in our children. It can be a source of pride. I can’t tell you how pleased my husband, an architect, was when he recognized that our son explored the volume of every building we entered, even at the tender age of 3. We weren’t surprised when the neuro-psych testing conducted years later confirmed that he had superior spatial reasoning. OK, so it was bundled inside a autism diagnosis, but this particular sort of exceptionality was something we had wished for in our children. There were advantages.

Of course, there were disadvantages too, and it was these that lead us to the testing to begin with. And here’s where laying claim to my child's traits can be a source of constant worry. Perhaps it is just the intensity of my focus on the subject or a mother’s guilt, but I swear I am recognizing the PDD-NOS, not only in him, but also in me.

I can be quite literal. I obsess on subjects of interest to me. I can recall conversations verbatim and at one time had the habit of replaying them to myself over and over again, even those that were mundane, trying to understand the nuances I either missed or over-focused upon, because I can be prone to that, too. And as for sensitivities to fabrics and tags, well, I’ve had that, but don’t we all? Don’t we?

I’m drifting dangerously close into a now notorious autism debate — whether it is caused by genetic or some environmental factor (vaccines for instance). Normally, I'd keep my distance. However, this week, I’m feeling a little more PDD than usual, perhaps because I recently made a huge upgrade in my computer equipment and software. I’ve been geeking-out exploring the latest features of Adobe Photoshop and am just amazed by how far it’s capabilities have come since I first studied design and printing. As a college freshman, I learned traditional graphic arts photography and typesetting skills — deep in the darkroom ages of the trade. The Apple Macintosh was introduced a few years later and I’ve been chasing technology ever since. Although I chose to major in design because I was attracted to the hands-on creativity, it's been the geek in me that has helped me continue and survive in this career.

To give you an idea what a autie-like creature I can be — and stick with me because I will relate this back in just a second — when I was pregnant with my first child, my daughter, I obsessed with the typical reading list; What to Expect When You’re Expecting, etc. But then I moved onto a book that truly fascinated and engaged me for the full 9 months of reading and, unlike the others, has ever since, Mother Nature, A History of Mothers, Infants, and Natural Selection by Sarah Blaffer Hrdy. I’ve thought about it a great deal lately, especially as I’ve tried to comprehend my son’s autism. Perhaps it is my search for a silver lining that has lead me to wonder if it’s not a genealogical or environmental cause but is instead a matter of phenotype. In other words, what if autism is natural selection at work?

Acording to a 2009 article on CBS, 1 out of every 100 children are diagnosed with ASD. That’s huge. Granted, there are portions of the spectrum that can be debilitating and complicate my argument that ASD is an evolutionary advantage, but when I look at my son with PDD-NOS, I can’t help but realize how perfectly suited he is to a world saturated with graphic interfaces and sensor technology.

Perhaps this is why I returned to Hrdy’s book as I struggled to understand my role in my son’s autism diagnosis — was I the cause (did he get it from me?) or the mothering "cure" (we follow a GF/CF diet)? Among the many fascinating facts about motherhood to be newly appreciated in her book, today I think I found the one that I must have been searching for all along, the statement that sort of let’s me off the hook (on page 56):
The important point here is that all anyone ever sees, touches, or directly experiences is phenotypes, never genes. It is phenotypes that interface with the world and interact with others in it. Only phenotypes are directly exposed to natural selection. This is why, evolutionarily speaking, and especially for those like me who study behavior, phenotypes are what matters.

Of course, it was easy to convince me, an identical twin, that it takes much more than genes to develop an individual set of characteristics. And while, I'm not quite off the hook entirely (genes and parenting are involved in developing phenotypes) somehow, that there are traits deeply embedded in his genetic code, in mine even, that have simply "switched on" in response to the environmental context in a way that is typical of our highly adaptable species, is a much more palatable point of view for me. This example of phenotypes and morphs and much more about her almost purely scientific, mother-focused but not autism-specific book was hugely comforting to me.

Silver Lining: I am far from a scientist. Hrdy’s book was then, and still is, a bit over my head. But I turned to it all the same because raising a child with autism put me in the deep end treading water anyway. Just as I’ve had to keep teaching myself the latest version of the same software program for the past 20 years, it's what I've had to do to survive.

I initially returned to Hrdy's book to look up a species of caterpillar that, depending upon its diet alone, could develop into utterly different looking organisms. I had been wondering, worrying, could it be as simple as something I ate, as diet? And if it was not the milk I drank or the vaccines I gave him, then what about, as a freelance designer, my daily and relatively solitary immersion into technology? Could I give it to him in this way?

Who knows if there's an autism-related answer there. But I'm glad I rediscovered her book now because in example after example she returns to a sole premise; of all the many magically varied forms and twists natural organisms and our biology finds in existence, they do so with singular purpose — to survive.

There is comfort in that to me. After all, when I look to the future, I imagine technology advancing at an even faster pace in a world full of social interactions that are (omg) wildly different than what I’ve experienced. And in this world, I can imagine a place for my son, a place where, eventually, he’ll succeed beautifully.


"Mother Nature: A History of Mothers, Infants, and Natural Selection" by Sarah Blaffer Hrdy, Pantheon Books, New York

Tuesday, April 5, 2011

Little Boob Man

The robin’s red breast isn’t the only one that’s shows itself in spring. With the warm weather, or even just the tantalizing hint of it, everyone is enticed to shed bulky sweaters and wear lighter clothes with open necklines that of course leaves women’s cleavage exposed. And this is more than my 8-year-old son can resist.

He is a certified boob-man. I’d be horrified of course to hear my 3rd grader described this way if I did not completely understand how his desire to grope is just another behavior tied to his autism-related sensitivities. He is a sensory seeking little guy. He always has been. And one of his first comforts in this world was to be held tight against me; my arms wrapped around his back as he pressed his little head up hard beneath my chin, dug his feet into my thighs and deep pressure held his body against my chest — night after night, this seemed the only way I could coax my baby to sleep. From the very beginning, comforting him has been an exhaustingly physical experience.

But as he grew older, the comfort he found by diving beneath my shirt into the warm, fleshy places on my body, preferably between my breasts, was becoming, problematic. He seemed to be constantly fighting for first base whether at home or in public. It was something he’d simply have to learn to resist.

He learned. Each year, we continually offered either appropriate substitutes or social boundaries. We gave him handfuls of Play-Doh and squishy balls to squeeze to his hearts content. When his hugs became too long and uncomfortably physical, we limited the length of time he would be allowed to hold an embrace. When his hugs became too frequent and excessive, we then explained he would be limited to only three hugs from non-family members a day. All these lessons were intended not to entirely squelch his sensory needs, but to help him understand that he must find a way to satisfy them in socially appropriate ways. After all, a toddler may be able to get away with a clumsy hug that finds his hands in surprising places or his head in motorboat position, but at age eight, soon to be nine, if allowed to continue, the boy might very well get slapped one day. He had become quite stealth about it, but he was that egregious.

And he’s been doing great. He really has. But in the past few weeks, I’ve been reminded how hard he works every day to control these impulses of his. And with the coming of Spring, he’s been hugging more, with such tight exuberance, as his Mom, its hard to resist it myself, but then on Friday, he did it ... I saw him openly grope a friend's irresistible Double-D’s.

“I’m so sorry!” I pleaded as embarrassed as ever, and then with as much calm as I could muster, I turned to C.S., “Outside in the hall now, Bud. We need to talk.”

It was a lesson for me. I could now so plainly see that although he gains control over his sensory issues, it is not something 2mgs of medication, social skills classes or therapies will “cure.” These many impulses, to flap his hands, to run and hide and even to dig his hands deep into warm, motherly flesh, are always with him.

Silver Lining: I get deep, amazing hugs from my C.S. To him, I promise, hugs with me are absolutely without time or number limits. And I am glad to think hugs are something my child will never outgrow, never resist, something I can count on receiving enthusiastically with every daily greeting. Oh, but I do worry as we enter the tweens and teens...

Friday, April 1, 2011

Lighting Up with Good News!

I'm celebrating awareness today!! And not just by lighting up my house tonight in blue to provoke friends and neighbors to ask me about autism, but also because our process with the school has shifted noticeably from adversarial to collaborative!

It really does work to follow the steps. Even though they pushed us into a PPT and hence a legal direction, we would not be intimidated. We held our ground. We never stopped insisting that those who can, please listen and try to understand our children. If it's your field, if you're their teacher, the school social worker or principal, I will expect you to help them. I will hold you to those expectations somehow. And we used the legal proceedings to our advantage.

But enough with that, I want to stick with this glowing silver lining which was a team meeting to discuss DeDe. This meeting was not a face off, but was full of ears, open minds, warm souls and discussions with all parties weighing in. It was wonderful. It felt like progress. And it was perfectly appropriate to her needs. We love how independent and resilient she is, but considering the social concerns we're seeing, we needed to know, as my husband said, that someone has her back at school. And now we feel like they do.

Silver Lining: The month of distress was worth it.

Wednesday, March 30, 2011

A Reply to Recommended Reading

So, it turns out a former classmate of mine has been working in the field of autism since he graduated college. He offered to make a few "virtual introductions" to autism groups in our area, always appreciated, and asked if I was interested in his group's recommended reading list.

I always enjoy a good book. I really do. It is helpful to get as much information as possible. I replied of course, that this has been a real education for me. But, as I explained to him, I have the order of study all jumbled. I feel as if I'm completing a long internship for my PhD while simultaneously studying for a Bachelors degree in ASD related issues. And who knows, in the next ten years or so, I might earn enough of an education to qualify as being the Master of something.

Tuesday, March 29, 2011

Alignment

Despite what feels like a constant and at times tiresome effort, I am always surprised when I recognize an accomplishment, a surprised little moment of "Hey we did it! Did you see that, we did it." I'm still grinning about his "fragile feelings."

So of course I tapped off an email to his special ed teacher ... not only would she understand and empathize but definitely, I'd ask her to build upon this.

I had actually contacted her first, wondering if this was something they had discussed. My first reaction had been to assume he had been directed to use such a phrase, that he couldn't have realized it himself. She responded quickly and she made it ovbious she shared my excitement. She also seemed to predict where my train of thought would lead, how did this happen?

And so she offered a little insight, something that might help explain it from the school's perspective. Feelings have been a topic of discussion in their writing classes, something C.S. has been thoroughly enjoying.

Apparently, he's experienced a fortuitous intersection or confluence of discussions about feelings. It has been the topic of his buddy group, I assume it's almost always the topic during his school pull-out therapies, we recently discussed it at home after our last boy scout meeting, and now as part of the regular classroom discussion, his world seems to agree, that this is an important lesson.

The facilitator of his social skills class stresses the importance, in addition to practicing at home, of sharing the lessons they review over the weekend with his team at school. This is the best way to achieve success, this sort of confluence. He provides us with hand outs and check lists to give to the school. I've not been very good about turning those in every week. I just assumed the school would not want to track yet another set of behaviors and so never pushed it. Oh, but thankfully, this week, it was just in the stars!

Silver Lining: I'm convinced more than ever of the importance in communication and coordination of our efforts, between school, home and outside therapies. It is important we see ourselves as being on the same team. And so this encourages me, not only to share the lessons with his team at school from his buddy group (I have got to get that stuff copied and sent!), but also to stand up and insist the school respond appropriately to requests for understanding and support for DeDe. We shouldn't be treated as the opposition. We're simply trying to join them. That's why we're coming broadside, not to fight, but to jump on board. If we act as allies, we can win this and so much more.

Monday, March 28, 2011

New Awareness

C.S. has made a number of comments over the past few days that mark a significant milestone for him. Yesterday he explained, "I have fragile feelings." When he repeated it again today, I asked if someone else had said this to him.

"No. It's just something I came up with myself."

"That's an interesting way to describe yourself. I think you're right. But why do you think that?"

"Because it's easy to make me cry."

Such self-awareness is really remarkable. This calm statement of fact is a huge departure from "I'm stupid!" which pretty much sums up what has passed for self-reflection over the past few years. It is simply something that has tormented and beaten him.

Of course, we've been working on just such a thing. Not only is saying "I'm stupid" one of the top 3 things he is not allowed to do ever, but we've also been practicing awareness skills in his various therapies. His buddy group facilitator directed up to a few websites that allow us to discuss and practice recognizing feelings, one uses real images and another a computerized face that he can modify himself. Of course he likes the computerized version the best. It is similar to updating his Mii or the clothes on his Webkinz characters and so seems like a fun game to him.

We also practice while watching television. Not just discussing what the characters are feeling but also for example, pointing out that Coach Sue Sylvester did not deal with her disappointment appropriately when she punched the judge after the regional competition winners were announced. It was so cute to hear him discuss her behavior so clinically.

But I'm still amazed that he's begun commenting on people's faces, asking us what we think they feel or telling us what he thinks they may be feeling. He's really applying his new skills.

We are making progress! I know it is happening, but even then, a gain of self-awareness can be a difficult thing to realize or measure.

Silver Lining: On a busy day of errands, while paused in a waiting room, I flipped through People Magazine (a guilty pleasure that makes waiting rooms so worth it) and saw an article on a high school boy born without a leg that had triumphed as a wrestler. I softened up immediately, my heart swelling for his accomplishment. Of course I'm an absolute sucker for such stories. I reflected then, how the world applauded this, in part because his the defeat of his opponent — his disability — was so apparent as, poised on his one leg, the ref raised his arm in an exaggerated pose of triumph. However, despite my son's struggles, despite gaining strength and skill through constant practice, it is highly unlikely my C.S. will ever realize such a photogenic moment. Phrases like "fragile feelings," though charming, aren't nearly as moving as a man running on blades across a finish line or the bulging triceps and pectorals of this one-legged wrestler. But, although it strikes slower, my heart swells even more at the realization of his new milestone. I feel like raising his arm high in the air over his finally defeated opponent. My friends, we have achieved an appropriate expression of self-awareness here!

Friday, March 25, 2011

Principal and Principles

The Principal called this morning. I knew why. I just wasn't sure if he would or how the school might respond to the letters I had sent. That's what I've been busy writing lately — letters of disagreement.

To back track a bit, after DeDe's PPT, I could not shake the feeling that the way the school had handled everything was sorely misguided and simply wrong, unjust even. As far as I knew, the school was obligated to provide testing in light of her recent diagnosis. And honestly, as my child's advocate, having been so horribly unsuccessful in eliciting any understanding or empathy for her situation during the PPT, I felt I had failed her, too.

Would I need to hire an advocate like we resorted to to regain services for C.S.? I didn't think her situation warranted that expense. And I was miffed to think I hadn't gained any skills in the whole PPT-process we endured with him already. But, next to regaining those services, the best outcome we have realized after formally diagnosing and "labeling" our son with ASD (autism) has been the network of information and support we've found in other parents of children with differences or disabilities. I think my favorite part of going to my children's "buddy groups" (social skills workshops), is the little impromptu support group that forms between the parents in the waiting room. There we share stories of our trials and triumphs, insight concerning what worked, what didn't and tips on advocating for our children. It would make sense that parents like us form a group to help advise each other concerning such skills.

Well, of course such a group already exists. One of of these friends shared an important link with me for The Connecticut Parent Advocacy Center, Inc.,or CPAC a group that does just that — educate parents concerning their rights and advise them on how best to advocate for their children. I had passed it along since, but for the life of me, don't know why I didn't think to contact them prior to DeDe's PPT. I guess I just thought I was a veteran who could handle these sorts of things, especially since I was simply inquiring about testing not demanding full services as I had for C.S.

But never too late, eh. I contacted them, if anything to just inquire whether I did or did not have the right to request testing in light of a diagnosis and concerns that there was simply more at play here than just ADD.

Well, I discovered I DID ... and so much more. They were incredibly informative, helpful and supportive. Based upon their recommendations, I made the next step ... I let the school know I disagreed with the results of the PPT and I filed a formal complaint with the state — and I did it was the law behind me. That law incidentally is Child Find, a provision of the Individuals with Disiabilities Education Act or IDEA

Under Child Find, the district is obligated to evaluate and identify any child they suspect may be a child with a disability. Such disabilities include ADD and AD/HD, etc.

And so now, I can come to the table and face a five-member, acronym and jargon spouting team NOT as a mother pleading for them to please understand, please help me help my child, but as a citizen with a law behind me to protect my rights. After all, it shouldn't be about how passionately I can plead my case to them — it's the law, plain and simple.

Well, I certainly seem to have gotten their ear now. I delivered the letters a couple of days ago. I got the call this morning. My husband and I have accepted the Principal's invitation. I'm not sure what the goal really is. I'm really not sure whether there is a possibility of testing still or not. I think what they want is to appease us or somehow defuse the situation because they're afraid we might sue the school or district. We're going because we want him to hear us, hear our concerns and understand our complaint because the principles of the matter are important to us too. After all, laws are there not so we can avoid impassioned pleas, but to protect humanity. It's this sense of humanity we're trying to reach.

Silver Linging: Being a fierce, fighting, information-seeking, nighttime-Googling, blogging, silver-lining seeking Advocate is not an avocation I would have ever in a million years sought to do. It is what I became. It grew out of the love for my children and is fueled by my maternal instincts. And just like the other mothers I run into in buddy group waiting rooms, at the playground with a big kid in the toddler swing or in the blogosphere — while it is an emotional roller-coaster, I've realized it is a source of infinite and inspiring power. I've not seen one mother turn-away for these job responsibilities.

Monday, March 21, 2011

Enforcement is a Big Job

I just got home tonight from our Boy Scout meeting. We visited a local police station for one of our achievements towards C.S.'s Bear rank, Law Enforcement is a Big Job.

Now, I knew this would be stressful for C.S. Most situations involving any type of tension are, even just the mention of it can provoke a reaction from him. But honestly, since he's been on medication, he's been so very pleasant and his moods so mild, I really didn't expect this visit to be too terribly problematic. He was even excited as we walked up to the entrance, flapping his hands as we greeted one of the other parents.

Once we walked into the lobby though, it was as if the energy of the place gradually seeped into his awareness and chilled his bones. By the time we left the lobby, walked through the door and down a hall, he began whimpering. I help his hand, which helped a little.

Our first stop was the roll call room. Desks, chairs, a podium, at first glance I could not see what there was to frighten him. But, he wouldn't sit in the front row with the other boys, he sat in the very back with me. He hid his face. He couldn't look at the officer. Even though he was simply encouraging them to stay in school and in scouting. Then I realized, he also couldn't look at the faces on wanted posters on the walls. Quietly, C.S. continued whimpering beside me.

In the hallway, the officer described what happened if someone sent a threatening email. He described a scenario of policemen arriving at a home, arresting a teen and confiscating the parent's computer in such vivid and somewhat sensational detail, C.S.'s whimper rose to wail and he began crying. He fell face first into me and I held him.

Thankfully, the kids didn't laugh or giggle. The parents kept respectfully quiet. I pulled him aside. I calmed his fears the best I could with squeezy hugs and quiet words. When we returned to the group, I briefly explained in response to the empathetic expression of the only other mother there and then to the fathers, that he imagines a scenario so fully. He visualizes it all and it is overwhelming and upsetting to him. I joked a little, saying he knew exactly how I'd respond if someone confiscated my computer and that was truly frightening!

But he was able to pull himself together. And although he was anxious not only about imagining such intense situations, but also the feel of the ink and the dirt, he allowed himself to be fingerprinted. The officer was handling this odd child beautifully. Deliver a mix of fun rough and tumble to most of the boys and even keeled confidence to this one that was so obviously unsure.

And the tour continued. We saw the police car and the jail cells. The officer knew how to play around with the kids, jokingly locking them in the back of the car with the bars on the window, pretending to leave them there where they couldn't get out. C.S. stayed close to me. We went to the dispatch area where 911 calls are received. We discussed what to do in case of an emergency. C.S. even raised his hand to participate. But it was then that he also began pacing.

Finally, I led him away from the group. We paced in the hall for a little. We opened the door and let the damp, foggy night air cool his face. He was tired and anxious and ready to go. He stood out the whole time, but he had given it a good go and I was proud of him.

Silver Lining: C.S. will probably never experience anything like most boys. He doesn't play sports now or perhaps ever. He'll probably never attend a frat party or tail gate before a football game. But I feel most confident, that tonight's tour was the only way he'll ever see the inside of a police station. He's just to sweet and gentle are caring. He won't get into trouble with the law. He's just not like most boys.

Friday, March 18, 2011

Consult or Insistence?

Five times now, Ms. Wall, the school social worker, has commented that the school should have been contacted for input to arrive at DeDe's diagnosis of ADD. She mentioned it on the phone when I first called to inquire about testing, she put it in the post script of her follow-up email, she stated it again during the PPT when I presented the diagnosis and she has entered it into the PPT summary. Five times, at least.

So, considering this, why would the school now refuse to provide testing, to provide the input they have repeatedly stressed they should be allowed to give?

The one thing Ms. Wall offered, was to speak to Samantha directly about DeDe's diagnosis. I was a bit surprised, but hopeful. And so, just as I had done for C.S., I signed a waiver allowing the school to consult her. I hoped a team would discuss DeDe's needs and that Samantha might provide her keen insight and a few helpful strategies, just as they had for C.S.. Hey, as long as DeDe would receive support, I would be pleased.

The call was scheduled for Tuesday. I was eager to hear how it went because I knew, in light of how little support DeDe received after the PPT, Samantha sincerely wanted an opportunity to advocate for her. If anyone could do it, it'd be she. I finally got a chance to speak to Samantha about it last night.

Samantha has a wonderful perspective on just about everything. Without ever sounding defensive, irritated or upset, she views the facts before her and motivations involved with as well-balanced an attitude as you could possibly hope for in a therapist. But she could not conceal her dismay that Ms. Wall would be so surprised that DeDe has ADD.

Samantha explained that the call came from Ms. Wall alone, not a team. She spent most of her time describing DeDe's symptoms and insisting, despite Ms. Wall's obvious surprise, that they are quite pronounced. While she can focus on something of interest to her, at most times, her inattentiveness is almost through the roof. She is socially awkward and she has significant anxiety as well, especially social anxiety. She explained that the doctor who confirmed the diagnosis and prescribed the medication (that has brought DeDe much relief), is one of the most renown in her field. The only missing pieces of this puzzle is whether the anxiety is a result of ADD or related to something else. But the diagnosis of ADD is unquestionable.

And yet, Ms. Wall continues to question it — seemingly won't accept it.

Before we got off the phone, I asked Samantha, "So did Ms. Wall ask for any strategies or suggestions to help her?" She had not. I was compelled to ask, "Well then, why do you think she called?"

Samantha pondered that for the slightest moment, "I think she wanted to know why I would encourage you to request testing for DeDe."

Silver Lining: My conversations with Samantha are thrown into sharp relief against the sort of support the school social worker offers — two professionals working under the same title toward the same purported purpose could not be more different. Samantha is rare, but ideals often are. And she does exemplify an ideal to me. She truly wishes to help her clients. She works hard to both sharpen her insight and broaden her understanding. And after reading these posts, my husband has realized how important she is to our family. We have canceled our cable service, trash pick up, lawn service almost anything else ... but we will find away to keep on with Samantha, if only 2x/month now instead of weekly. I'm very happy to say that while we don't have the support from the school social worker, we will find a way to continue with Samantha, through the school year at least. And I have to say, Samantha proves that people can support each other. She has renewed my faith in therapists and therapy.

As for Ms. Wall, it appears, her call was not an effort to help DeDe, but follow through on her insistence that the school, or more specifically that she have input, that she have her say concerning this diagnosis. I can only hope after she was heard, that she also, finally, listened.

Thursday, March 17, 2011

Acting in Self-Advocate

As quick on my feet, as articulate and in command of the facts as I believe myself to be, I've decided it was foolish to think I could advocate for my own children. It is just too important, to vital to me that I, that someone, support them.

I can not be dispassionate about my child. The school principal could. The school social worker could. The classroom teacher, a specialist who never made a peep, all of these people know my children and perhaps truly care for them ... but they have the ability during a PPT to separate themselves from this relationship and look at my children with such objectivity. They could be "professional."

I could never achieve such disaffected objectivity. Maybe for a while. I certainly gave it a good try. But eventually, when describing the sincerity of my concerns, trying hard to reach them, I couldn't help but tear-up. Meanwhile, they remained detached.

Even though I realize such an attitude is professionalism, this was a child, my child, we were talking about. I was hurt that they could not be more empathetic. But, I could not reach them. And they would not reach across to me. This natural difference formed a huge divide between us.

To act as your own advocate is much like acting in self-defense. Despite all my preparations, it's almost all reaction. And it's sloppy. And it can feel desperate.

If I could do it again, I'd swallow the expense or perhaps ask a friend, but definitely bring somebody in to advocate for us, to act as a necessary go between. But if not, I'd be more prepared to demand the principal stop throwing around jargon and address me as a parent. Or perhaps I could better prepare myself to expect any variety outrageous comments and so not bristle into a paralyzed silence as they threw out the ISEE testing merely as an example that my daughter was just getting back at her parents or when they just ignored my son's clinically significant BASC scores.

I can not respond calmly, or rationally. I can not be an advocate. How could I expect to respond in any other way than as who I am, in the role that has the most priority for me, as a mother, their mother.

Monday, March 14, 2011

Norms vs. Personal Best

My children's school has something of a motto that all the kids have learned to repeat: "Do your personal best." It reminds the children not to compare themselves to anyone else, but to measure their performance/grades against their own expectations and their personal potential. If sincerely applied and wholey adopted, it is a phrase that has the potential to encourage self-awareness, goal-setting and also pave the way for inclusiveness and tolerance. And so, I was encouraged to see this phrase adopted by so many young lips. I too, encouraged my kids to live by these words.

Now, it's my daughter who has actually invoked it most often. For example, when I remarked on her poor handwriting or suggested she read to the end of the chapter, she countered "but I did my personal best." Ohh, I groaned and shook my head at how she just didn't get it. Ah, but I now realize, she had actually made an astute observation of its true nuance.

During the PPT, I witnessed the staff refuse to recognize or apply this very concept. Each time I tried to discuss the noticeable decline in DeDe's reading comprehension, the school countered with a typical range. I tried to relate to her personal best — they instead played Norms like aces.

As it's applied, "Do Your Personal Best" could be more accurately translated to, "Don't let others tell you you're not doing well. You just do your best." DeDe realized this. It is a defense or at best, used as a chin-up sort of encouragement.

The true and prevailing rule at school is the Norm.

Silver Lining: I don't know if the school even h a s an official motto. "Do your personal best" is an indisputably good one (It is, incidentally, the Cub Scout motto). It is also a great chin-up line. I suppose it was I chose to adopt these words as something to live by. And I know I tend to be more like C.S. and have an Aspie-like, rigid adherence to rules and such things as this. But, I truly believe these sorts of things we teach our kids. I honestly try to live by such words and not just give it lip service. If it sounds like a motto, is treated like a motto, I expect it to be applied like a motto. But, I think most people would think I take these things to far. But that's what I do. And that is the way I want to live, the way I want to teach my children. Ah, Words words words ...

Friday, March 11, 2011

Play it One More Time Sam

We'll see Samantha today ... but today, it will have to be the last time. We'll have to say good-bye.

We've been fortunate to duck many of the economy's worst blows, but no longer. This week, it kicked us square in the back seat, right over the wallet-pocket.

I truly do not want to leave Samantha. Her keen insight, perception — her ability to share our perspective and then provide a slight adjustment to it — has been invaluable. But as I've complained before, it is a luxury we could barely afford and now simply can't.

I'll give this last session over to DeDe. It is unfortunate because they were just beginning to develop the trust that would have been essential to making progress. One sad part of forming a close bond is the moment you must break it. And I hate to have to break this off between them.

Maybe, once things straighten out a bit, we'll be able to start up again, somewhere close to where we left off.

But for now, for all we know, today will be the last.

Silver Lining: Samantha is amazing. I'm glad to know her, to have experience Cognitive Behavioral Therapies. Every session we had seemed to bring if not immediate progress, then a plan to keep us headed in that direction. I'm thankful for every second, every dollar, every moment of this investment. She's a person who made a difference, who made this world a better place.

What About Private?

The school knows we are exploring private schools and have been since last year. It is not something I can keep from them. The process involves requesting transcripts, teacher recommendations, sample work, etc., etc.

I wish we were able to keep it from the school somehow, at least until we got to a point of certainty — much like concealing a job search from your current employer. I worry that the school might hold it against us, or the children, somehow.

At the end of the PPT on Monday, my concerns seemed to play out before me. After all, I had presented ISEE exams as examples of DeDe's dramatically falling educational performance. The social worker told me she had asked DeDe if she wanted to go to private school and that DeDe seemed ambivalent about it — so they had discussed it. I can only imagine what a difficult position DeDe found herself in as she tried to answer such a direct question about this search process. And then of course, that's when the social worker suggested DeDe had sabotaged the test. The very next thing she asked me was, "So, what about private school? Have you made a decision?"

What she was very clearly implying with this statement posted as a question was that the school would not begin to consider testing for my daughter because she knew we were considering private schools.

"We don't know. I haven't even heard from the school, yet," I replied.

"Well, because we're beginning counseling the children for the transition to the Middle School. It'd be good to know if she's going."

The social workers manner always seems abrasive to me, perhaps because she seems so much more concerned about costs and expenses than she does my children. And once again, she seemed to be afronted that I could suggest the school spend such time, resources and money on my daughter if she were not going to stay in the public school system. That any investment in her was at best risky and most probably...a waste.

Once again, as it has so often, it seemed that my open search for alternatives, my inquiries, in our public school setting, would be held against me and my children.

Thursday, March 10, 2011

Part II: Poker Face

I don't have a poker face.

If you could see me now, you'd know that today, I am sad. And who wouldn't be. I asked for help and was turned down.

That's the simplest reduction of the situation anyway. Of course it's more complex than that. But even if I step it up just a little bit to: I contacted the school social worker to share my concern about my child's struggles. While she empathized, she also made certain to point out that some sort of misstep had been made. She felt the school should have been contacted for input. But when I then requested their input in the form of testing, I'm forced into the situation of requesting services I don't really want or feel she needs, and so into a situation that puts the school staff on the defensive.

And so I, one parent, face off against their whole 5-member team. In this form, the sweet teacher and the charming principal are no longer caring, empathetic individuals. They will not offer reassurances that they understand my concerns or even recognize the struggles that seem so very evident to me. Not only does no one seemed concerned at all about her drastically falling scores, but they actually go so far as to suggest that my daughter sabotaged her tests. And doing so, they not only indicated how clearly blind they are to her struggles to navigate our public school, but also implied that might be because we were forcing her into something she didn't want. Really, that's the sort of caring perspective our school social worker can offer.

Clearly the school has no idea how incredibly earnest DeDe is. But we all know she's a great kid. We know how wonderful she is. But they must know how intensely secretive she is too. She flies under the radar beautifully. Because she doesn't grab attention with bad behavior or bad grades, that is no reason to neglect the obvious signs she does present, that problems that persist.

And so, post PPT, I feel like the school just doesn't give a s#@t.

Silver Lining: OK. So that's how I feel right now. It's a feeling all tangled up with not only Monday, but PPTs past also. And so, its good to remember, that C.S. is much happier now. He is receiving support and it has made a world of difference for him. DeDe's struggles are nothing like his. They don't compare. She is doing "well" at school. She makes A's. She gets along with most children beautifully. She's involved in after school activities. And thankfully, she is not the sort of kid who needs special services. But, still, I recognize how much she is struggling and how difficult it has been for her lately all the same. She's had some noticeable falls. I want to help DeDe, too. So how do I find support for that? That a 5-member team could listen to my concerns, review her tests, receive her diagnosis and offer me nothing, well, it just hurts.

Wednesday, March 9, 2011

The PPT Poker-face

The meeting on Monday went very much like I expected. The team assembled to, in so many interesting variations of style, tell me my concerns were not valid and that my daughter does not require special education services.

Now I happen to agree that my daughter doesn't require special education services, at least that wasn't what I was seeking. I did think that, now that she had a diagnosis, she was due some school support and testing if I requested it.

So, I had contacted the school social worker to share my concerns, see what she might suggest and to inquire if they were still testing this late into the school year. To my question, the school social worker sent an empathetic reply that acknowledged her struggles to which she attached the following P.S.:
Just wanted to mention that we are surprised that the school was not asked for input on the ADD diagnosis for [DeDe].


OK. So I admit, the PS irked me. To this I replied:
Thank you for checking in with [DeDe]. I definitely think she is struggling. I want to help her however I can.

As you may recall, I initially contacted you to inquire about testing. I'm trying to figure out exactly what is going on with [DeDe] right now and why she is struggling so. So, if the school wishes to have input, well then I welcome it. Let's begin testing. I am eager to know what you find.


And that changed everything. Apparently I can not request testing without requesting services. We entered into formal PPT proceedings — the social worker and I would be facing off again.

At the PPT I knew to expect that I would go first. And although the social worker had acknowledged some concerns and offered to invite DeDe to her office for helpful chats before, I expected she would give little ground now. So I intended to make my first play a good one.

Once I gathered everything together, I was surprised to discover I had a more winning combination than I expected. These were my cards:

1) In her report cards and teacher evaluations, I was able to highlight concerns about DeDe's attention, focus and concentration in teacher comments since preschool with the one exception of her 1st grade year.

2) My suspicions that she had fallen into some sort of cognitive fog seemed proved by recent exams that showed a marked decline in her testing results, especially in areas of reading comprehension. Her reading record dropped from being comfortably above goal 1st through 3rd grades (21 pts above the school average on her 3rd grade CMT) to a precipitous fall below goal (43 points below the school average on her 4th grade CMT — a drop of 64 points overall). To this we added ISEE exams conducted over the past 2 years. Her performance on her recent exam showed a suspiciously sharp decline, she actually answered fewer questions, where I would have expected at least mild improvement.

3) The social concerns at school are always a grey area. Without testing and evaluations, I had little to point to with the exception that DeDe's closest classmate friend had moved away less than two weeks ago. And of course that she had experience bullying as recent as this year but most pronounced in 3rd grade (that had gone unidentified for months by the school and that once recognized was met with egregiously little support).

4) And as requested, I brought in a note from DeDe's therapist describing her symptoms, resulting diagnosis and her professional recommendation that the school offer testing to "better provide educational support."

Now, I recognized that in this game, the house has a distinct advantage. I also went in knowing I would loose. But still, I hoped they would relent to testing, to offering us not full-blown services, but something, some sort of support. Or at the very least, that they would hear and consider my concerns and so initiate an evaluation process. This is how it played out.

1) The classroom teacher, who at the parent teacher conference agreed that DeDe often had to be reminded to focus on her work, particularly reading, instead of drawing, now sang a much different tune. I don't think she had forgotten our discussion of DeDe's messy, disorganized desk or my earlier request to help her use her planner more affectively. Though she quickly acknowledged these concerns then, she had her PPT-face on now and would not offer me anything more than a wide-eyed look of surprise that I could not recognize the achievements of my own child. She was making A+'s after all. And so A's blinded all eyes to any decreases from her potential.

2) To the concerns specific to her reading record, the classroom teacher found that DeDe's reading level had improved from S to U since 4th grade perfectly encouraging. To the ISEE testing: the school psychologist discounted it as being normed against a different group despite my repeated comments that I was comparing the results themselves, comparing her own performance year to year and not to anyone else; and the school social worker reported that DeDe seemed ambivalent about attending private school and suggested she had intentionally sabotaged the results to avoid the situation. They all seemed to just ignore the CMTs.

3) To the social concerns, the school psychologist played a 3-of-a-kind: three recent observations at lunch, recess and during math (not reading), all positively described. Apparently, with these three recent descriptions in their hand, they could discount other, less positive observations over longer periods of time or any other related concerns or reports.

4) In response to Samantha's letter, they noted she is a social worker, not a doctor. And though DeDe most certainly received her prescription from a Dr. Finetime, the med-manager working in association with Samantha, they seemed to discount Samantha's recommendations completely for lack of credentials, she was "just" a social worker.

And that was that. The hands were played. I anted up and lost big time.

This is not just a convenient and cute metaphor, you know. It is a real and terrible gamble. Now that I brought us to the table, I feel certain that the teacher and the principal will absolutely avoid acknowledging my concerns or her struggles at all. My son's too for that matter.

Their needs are real. But their needs are not great. If you want to save money, and who doesn't in this economy, these are the needs you refuse to acknowledge. These are the sort of children that can end up loosing.

Silver Lining: Its coming, but tomorrow. I've typed enough for today, but believe me, I'm still processing this one and will be for some time.

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