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


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.

Monday, March 7, 2011

PPT, for the Other One

I have a PPT at the school this afternoon, not for C.S., but for my daughter DeDe. I'm requesting that they begin testing her.

She is so clearly struggling, both socially and academically. Focus and organization have always been mild concerns. And though her therapist described her as a "classic case" of ADD combined type, I've not always found it was that very apparent.

Not until recently. Lately it seems that not only has she withdrawn further and further into her very independent and secretive self, that some sort of cognitive fog has enveloped her. I want to figure this one out.

And so, I am prepared for this meeting. I have copied all her reports cards and testing. I've highlighted the appropriate areas. I've charted a clear decline in reading comprehension. And I can't help but reflect how poorly prepared I was for that fateful PPT when C.S. lost services at the end of his Kindergarten year.

Never again I said then, never again would I assume they simply have my child's best interest at heart. They, the staff, represent the school's interest. I am the representative for my children, for my very valid concerns. The PPT is a playing field. I am not coming in with an advocate, not this time. Hopefully there'll be no need to pull in a ringer. I really think I can do this on my own, but we'll see. We'll see.

Saturday, March 5, 2011

Problems vs. Puzzles

Once again, Samantha, C.S.'s therapist has suggested a most insightful strategy. Recognizing his love for puzzles, especially mazes, she offered C.S. a slight adjustment in perspective — she suggested he see these situations that can be frustrating and difficult for him not as problems that he gets either right or wrong, but more like a puzzle, like a maze. When solving a maze, given the beginning and the end, what makes it fun and interesting is figuring out the path between. Some are easy and others are really difficult. He could easily relate to taking wrong turns, meeting dead ends and then continuing to try to solve the puzzle. Perfect.

Silver Lining: What more can I say, I'm so glad for an hour of Samantha's time, for her perspective.

Thursday, March 3, 2011

Good Call

C.S.'s Special Ed teacher gave me a call yesterday, just to check in. We talked for what seemed like for-e-ver! (as my kids would say) The call must have lasted at least an hour and was filled with all sorts of absolutely rich exchanges of information! She gave me insight into his typical day at school, some perspective on his progress and some vivid anecdotes describing how he's beginning to relate better with his peers. I ate it up and could have talked to her for hours more.

During this exchange of insights, together we were able to realize the reasons for C.S.'s recent struggles and share a few ideas to help assist him so that he might be able to manage his frustrations better or even avoid them altogether.

We realized he seems to struggle most frequently during gym. (He has a dedicated Para for recess, but not for gym.) I felt many of the recent incidents could have been easily recognized and so avoided not only by school staff but also by C.S.

1) Staff recognition: The Special Ed teacher is going to talk to the gym teacher. We recognize C.S. is trying to participate in all games and wants to participate with his class and his friends. But, we are asking the gym teacher to recognize those situation in which he simply can not participate in the same way the other kids. We want to increase this awareness and suggest alternative ways C.S. might participate,if not on a team then as an assistant, a sort of ball boy or referee.

2) C.S. recognition: When I asked C.S. why he played dodge ball when he knew he hates the game or why he wouldn't simply explain he didn't like wearing the gloves so that he could participate in something he loved, to both incidences he replied that he didn't want the Para or the Teacher to get upset with him because "he refused to participate." It became obvious in our discussion that we need to help him understand that there are times when it is appropriate and perfectly acceptable to refuse, or to at least to refuse a certain aspect of participation. If he recognizes this, "uses his words" and can explain the problem, the teachers can help him find an alternative or modification so that he may participate.

3) Adjustments for Growth: He has grown tremendously this year! It is wonderful to hear. But when recognizing such growth, it is important to also recognize certain strategies will need adjustments if they are to be a good fit. We're considering a couple. For example:

a) Achieve vs. Bolt: It was helpful to explain how C.S. spends much of his "alone time" at home outdoors and that simply being outside can calm him. The SpEd Teacher took this bit of information and connected it to an urgent need to avoid potentially dangerous incidents when he simply bolts out the classroom door into the parking lot. She is now going to use time outside as an incentive. She'll also ask if he needs to take a walk with her at times he needs help coping and readjusting his mood so that he might "return" and participate.

b) Rating System: The Special Ed teacher has done a great job helping C.S. recognize that his reaction is often disproportionate or inappropriate to the situation. To do this, she'll ask him "is it a big problem or a small problem?" to prompt his own evaluation and judgement of the situation and his reaction to it. BUT because he does tend to go to extremes already, either big or small, I asked if they could rate the situation on a multi-point scale, anything that includes middle ground or the many shades of grey we wish he could perceive between black and white.

Ahhhhh. I love information. The stuff you can do with it and good communication. I feel like part of the team again!

The Special Education teacher reiterated (because she has said it before) that her door is always open and welcomed me to call whenever I had concerns or questions.

Silver Lining: Or in this case, an important reminder to self and a little self-reflection. When there is someone extending an invite, even if only one person or even if it was some time ago, it is never to late to simply graciously accept and acknowledge such kindnesses as the gift they are. I fully admit, I had neglected to do this.

Tuesday, March 1, 2011

Incident Reports

Snow days galore broke our rhythm and I've been struggling to get C.S. into a comfortable routine since. We've had some sort of incident at least once, often twice a week for over a month or more it seems.

On Monday, C.S. "refused to participate," a phrase that is unfortunately familiar. He explained that it happened in Science. But he loves Science They were working on owls. But he's been so very involved with birds lately, he loves them. And he wouldn't participate.

I had to figure out what happened on this one. Why would he refuse to participate in an activity he so clearly enjoyed. So I gently gave him a loving inquisition. Turns out, they were looking at owl pellets. They were looking through the pellets to discover bones and more about the owls' diets. And...they were wearing gloves. It was the gloves. He "hated the way they felt" and didn't want to wear them.

Considering his sensory needs, it makes complete sense that he'd become frustrated. But also considering his sensory needs, I'm becoming more and more frustrated that such issues continue to be so difficult for his team to recognize.

Granted, he didn't tell them that he didn't want to wear the gloves. But this concerns me too. He told me fairly easily. Why wouldn't he feel comfortable telling his teachers or the para in the room? How are these situations being handled at school?

Well, apparently something happened again today. And today, he's "refusing to participate" with me. He's keeping mum about it whatever it was.

I have few clues to follow here: His "behavior chart" consists of smiley faces, frowny faces, grouchies, stars and — what I really relish — the occasional marginal notes. If he's good, he gets a smiley face. If he has "unexpected behavior" but is able to cope or recover, he receives a star next to his smiley face. If he does not recover, he receives a grouchie. When he receives a grouchie, I usually get an email from the teacher — that is something I treasure like the relative gold mine of information that it is. Every blue moon or so, I get a call and to be absolutely honest, those always send my heart lurching into my throat or plummeting into my stomach, but they too are rare jewels.

Today, he received a most unusual combination of frowny face with a star. C.S. was the one who pointed it out to me. He was perplexed. (Hmmm. So was I, did something happen or not?) But it seemed he'd caught on perfectly that no one will contact me unless it's a grouchie. And so absolutely he has decided to take advantage of the situation by politely saying "I really don't want to talk about it."

And so, I'm in the dark — a frowny face beneath a dim star.

Silver Lining: Well, I may have little more than emoticons to explain what is going on at school, but I guess I should be thankful for what few clues I do have. After all, if I hadn't gotten him back to receiving services, he'd have no team, no sensory breaks and no pages of smiley, winking clues to bring home to me. Without these services, it'd be like it was before, the teachers would simply sum him up as a "bad kid," the school snub us and he'd receive no support at all — he'd be made a prime target for bullying, which he was but thankfully is no more.

Even still, sometimes I feel like I just can't break through the school's wall of smiley faces that they place before me.

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