Roller Coasters

So, remember when I was going to be less "Oh, woe is me" HAHAHAHAHAHAHA. Yeah, I'm sure NONE of you saw that coming.

OK, so the kids started school, and after the initial craziness where we fought to get D. placed where they had told us he would be placed, he was placed there, and Mr. WG and I went there the first day to see how things were. I stood and observed the class and I said to Mr. WG, "Um… I'm not so sure about this placement."

Maybe I should back up a little.

When Mr. WG arrived in Israel, he called me one day. "So, I went to see this school," he said. "I thought it was in Karnei Shomron, but it turns out it's in Shavei Shomron."

"Ok," I said, because he could have told me he thought it was in Sweden and it was actually in Denmark for all it meant to me.

"So, like, it's not going to be Israel, eventually," he said. "You have to go through a machsom (checkpost) to get there. So, when I found out where it was, I didn't even want to go, but then I went, and I really didn't like the drive there, but… I really liked the school. It's a great school for D. But the location… it's not for us."

Instead, Mr. WG liked the school in Rosh HaAyin. They had a "small class," he told me, which he explained was the equivalent of a special education class. Except that what he *meant* was that it's the equivalent of a class for kids with learning disabilities, and when you take D's delays and add in the whole "Hey, here's a new language WITH ALL DIFFERENT LETTERS," we need a class that's -- well, not the class in Rosh HaAyin. And that was clear to me from the moment I saw the class.

On Friday, we went to a meeting at the school, a meeting we asked for. The teacher and the counselor tried very hard not to say it, but what they meant was, "Please, please take your son out of this school." I left the meeting -- what's the word? Oh, devastated. Yeah. That.

We made some phone calls and prepped for Shabbat. We went through Shabbat, and in the late afternoon, at our friends' home, there may or may not have been an incident involving me shouting at my husband that I don't have time to waste, that we need a KICK-ASS PLACEMENT for my kid, and WHAT THE HELL WAS HE THINKING putting him in the class in Rosh HaAyin. It may have happened. I'm just saying.

This morning, we went to see the school in Shavei Shomron. You go through a little Arab village on the way. "This is what bothered you?" I asked my husband.

"Yes," he said.

"Um, you do know that your parents live in UPPER NAZARETH and we used to drive through LOWER NAZARETH on the way there, right?

"But that's different."

"Why, because you've done it since you were a kid?"

"Well, yeah, and this is, like, 40 minutes from our house."

This is true -- the school is a bit of a schlep. If I had to get there weekly, say, to serve hot lunch, it would be annoying. But D. will have a ride there and back.

We got to the school. The secretary knew exactly who we were -- and we hadn't called ahead. The assistant principal showed us around and talked to us. We saw the different classrooms, saw the kids race over to hug the assistant principal when they saw her. We met with the psychologist, the principal, and the counselor. They saw a video of D., and all of them had the same maternal reaction to it.

They get that D. needs one on one. They can do that. They get that he needs first grade -- even though he's as large as some of the 6th graders. They get that even though he's as large as some of the 6th graders, he's only SEVEN.

I'm taking D. there tomorrow to meet them in person. Mr. WG will be off to Holland for work, but the school and D. can check each other out, and a decision may be made as soon as, you know, tomorrow. So. There we are. And here we go.

Shamelessly Asking for Your Help

Dear Friends,

Every time my son asks for a playdate, my heart breaks a little. Adi is seven years old. Although he is sometime invited to the birthday parties of my friends’ children, he is usually overlooked. Although my five year old son is often invited to someone’s house to play, Adi is always left behind. We try to arrange occasional interactions for Adi with his peers, but it’s asking a lot of a first grader to play with a child with special needs whose speech isn’t always intelligible, who can’t play the way other children do, who is clearly, visibly different.

The first time I heard about the Friendship Circle, I was skeptical. Teens were going to come to my house and play with my son for an hour? My son could go to activities and someone else would interact with him while I had a cup of coffee and chatted with other parents? Maybe it sounds cynical, but I’ve learned not to get my hopes up.

If I say that Friendship Circle has changed my life – and my family – you will think I’m exaggerating, but I assure you that I am not. For three years now, Monday afternoons are filled with anticipation in my home. From the moment Adi returns from school, he announces, “Dean’s coming!” And when Dean arrives – the jubilation is tangible.

Dean is happy to do whatever Adi wants to do – watch videos of garbage trucks on YouTube, play in the park, act out episodes of Blue’s Clues – whatever Adi wants, he gets, for that hour. Most exciting, of course, is that he gets a friend. He gets a playdate. And it is amazing.

When we go to Friendship Circle activities throughout the year, Dean meets us there and whisks Adi away to have fun. At first, I was nervous, but I’ve learned to let them go -- not that Adi gives me a choice. “That’s my Dean,” he tells me. “Not your Dean.”

People who don’t know me know Adi from Friendship Circle and greet him warmly when we are out and about. Sometimes I feel like wherever I go in Houston, Friendship Circle is there, a small but shining presence that lightens my step, that makes my days easier.

I was surprised to learn recently that just to break even with their current programming, Friendship Circle of Houston needs $80,000 annually. And they have plans for expansion – but those plans take money, of course. When you donate to the Friendship Circle, you help support the programs that already exist, and you help build the vision that is slowly coming to life. You give Adi, and other children like him, playdates. You give respite to parents, support to siblings, and you give the world a chance to see my son’s smile.

Our family is participating in this year's Houston Friendship Walk. We need your support to reach our goal! Please make a secure online donation today.

You will automatically receive an acknowledgment and I will be notified by email of your support. Together we are truly making a difference for those in need!

OMGOMGOMG

This is my kid with Sotos. Riding a bike. Without training wheels. Because he is awesome.

On Anger

So, I have a friend who has a sister with Down syndrome, and I am constantly in awe of my friend and her entire family and their approach to life in general. And my friend just had a baby, so her family was in town, and a different sister of hers slept at my house, and we had the opportunity to talk.

Some months back, my friend's mother was telling me that when her D.S. daughter was born, she was afraid to look at her. "They had to tell me, 'It's okay, she's not a monster,'" she told me. This was such a powerful thing for me to hear, because this woman is, like, the mother I want to be. What she has done for her daughter is astounding to me, and she is so amazing. Her faith is strong. She is patient -- but tough as nails. But kind. But strong. Amazing. I am constantly amazed by her, and it was so, so good for me to hear that these qualities did not just come from nowhere, but rather were cultivated over many years. It gives me hope that I can do these things for D. one day.

Anyway, I was talking to my friend's sister, who was all of a year old when their D.S. sister was born. I told her what her mother had said, and she was so touched to hear how it had affected me. We talked about the different approaches her parents have to life, to her sister.

"When people would tell my father that my sister was a bracha (a blessing)," she said, "he would say to them, 'You think this is a bracha? You want my bracha? I'll give you my bracha.'" She told me that she was always horrified by this comment, and he basically told her, "When it's your child, you can tell me how to feel." Recently, someone said to him how amazing his daughter is, how much she has accomplished. "And he said, 'Really? You think it's amazing? I think it's disgusting,'" my friend's sister told me.

This is one of those statements that pretty clearly divides the people who have children with special needs from those who don't. If you don't, you hear that this man thinks his daughter is disgusting, or that he doesn't love her. But if you do, you hear it very differently. He's not saying that his daughter is disgusting. Not at all. He's certainly not saying that he doesn't love her. He's saying something else entirely. That this reality is disgusting. That it is disgusting that God would do this to his child, this daughter he loves so powerfully. That he rages against the forces that have dared to inflict this on his child.

I know where that anger comes from. I know exactly what he means, and why he says it. Because it is incredibly frustrating to hear again and again how lucky my child is to have such strong parents. It is insulting and demeaning to hear that you couldn't handle my child, that what we do is so hard, so amazing, so wonderful.

It is disgusting that people are constantly astounded that we would do these things, as if they are out of the ordinary.

She said she's tried to tell him that if he would let go of the anger, he would have a better life. And I hear her argument, but I also know how hard it is to let go.

I guess we all have our hot-button issues.

In case you missed what's going on in the comments on my last post about D. hugging other kids and squeezing their hands, here's a quick recap:

Bob said, "There must be found a way to prevent any child from repeatedly being on the receiving end of unwelcome touches - and in the short term." 


I asked him what he'd suggest, and if he felt that my kid shouldn't be around the "normal" kids. And I wasn't trying to be snarky (well, maybe just a little) -- I really wanted to get in the other parents' heads. And Bob said:

I suppose that yes, I think that a child who cannot be prevented from repeatedly subjecting others to unwanted touch should not be in the classroom. But I find it hard to believe that this prevention cannot be accomplished. Couldn't a reasonably energetic para prevent such touches? Isn't that precisely what we would expect if a student was a physical danger to others, or to themselves? Why is this any different?

I'm curious to be in your head, too. If another child were handling your child against her will, repeatedly, and she were upset and bewildered and anxious and not wanting to go to school - would you think that an "ongoing process" was good enough, and, meanwhile, that it wasn't the touching child's parents' problem because those parent "aren't there to do anything about it"?  

So, here's the thing: the first time I heard about this issue was that first note. I wrote a response. The next day came the second note. Now, it is entirely possible that the hugging/squeezing has been going on since the first day of school and no one bothered to mention it to me until that first note last week. And if that's the case, then it was probably NOT an issue for the child involved. But then a parent saw it and decided that it was Not Okay and complained, and then a note came home. Or, the hugging and squeezing started more recently and again was not enough of a problem to warrant a note home until a parent complained about it.

It's also possible that it started whenever it started and was immediately a real issue for the kids involved, but the teacher thought she could handle it until she thought she couldn't handle it and then she wrote a note home. But I think that Bob's assessment of the issue is wrong. I really have trouble believing that D. was handling another child "against her will, repeatedly, and she [was] upset and bewildered and anxious and not wanting to go to school." If that was truly the case, then it deserves more than a scrawled note on a daily conduct sheet.

There was another incident at school. A parent dropped a child off in the classroom and then went to the assistant principal and told him that D. had shoved her out of the class. The AP came to the teacher to find out what happened. The teacher -- and this is the strict teacher, the one who told D., "You don't say no to me," -- said, "What? No! The parent dropped off the child, and D. said, 'Ok, you go to work now, bye!, and closed the classroom door." Yes, he did put a hand on the parent, but the teacher insists that it was not a shove, and certainly not with violence or malice.

I have frequently seen D. interact with kids. He is often physical, because that's an easier way for him to communicate than verbally. He often hugs kids, he often squeezes their hands, and he sometimes lifts them up. This is generally accompanied by a lot of laughter -- from both children. If the other child seems taken aback, shy, or frightened, I intervene. But if they are having fun, I usually stand to the side, watching closely, but smiling.

I have seen other parents watching, also cautiously, but smiling, unless or until there is a problem. I have seen other parents glance over, assess the situation, and determine quickly that there is nothing to worry about.

And I have seen parents immediately jump in to admonish D. or quickly pull their children away from him as if he is a contagious leper.

It is always interesting to me to note that the leper parents generally have children who think NOTHING of walking up to my kid, shoving him, and walking away laughing. Or telling him, "No, D., you can't sit with us."

Many times, I've thought that if D. has a more distinctive look -- say, the features of Down syndrome, or the tight limbs of cerebral palsy -- people would cut him more slack. They would see, and they would immediately know. But he blends. Unless you know what you're looking for, you might see a typical 12-year-old. (And let's remember that my son is 6.) So no one thinks there's a reason to be kind or understanding.

I guess I don't really have good answers. But I wanted to at least tell you my side.

First Impressions

So, it's day three of school for D., and I have to say that as wary as I am of this placement, I am incredibly impressed with the effort being made by the school.

They told us that D. didn't qualify for the bus this year, because he's attending the school to which he's zoned, and it's less than 2 miles from our house. This is a problem because D. doesn't enjoy separating from Mr. WG in the morning.

Let me rephrase: D. becomes an absolutely hysterical basket case when separating from Mr. WG each morning.

Yesterday, the principal told Mr. WG that they would look into getting D's bus back, if that would ease his morning transition. Today. the principal called and left a message for me. I called her back, and we spoke for 10 minutes about the various supports she has put in place. She updated me on the bus situation, told me about the aide they've assigned to D. for the first hour of the day to support him, the information she's given his teachers, and so on.

They seem truly committed to making D. successful. I am grateful.

Epistle: To D., on the Occasion of His First Day of First Grade

Dear D.,

When Daddy and I first started dating, The X-Files was popular. (Yes, we are THAT old.) And Mulder had a poster in his office, a poster that said, "I want to believe." D., I want to believe. I want to work towards the future I want for you SO BADLY.

Daddy thinks that your new school is full of people with the best, the very best, intentions. But, he says, and I have to agree, they have NO IDEA who you are. They want you to succeed. They are committed to your success. I get that. I do. But I'm not sure that I see, with the clarity that they seem to have, how we get you from where you are to where we all want you to be.

Daddy took you to school today. You were crying when he left, and Daddy was pretty sure we'd get a phone call telling us to come get you. Somehow, that didn't happen. I came to school early to check in before I picked you up. In the office, the Assistant Principal and Principal both came to tell me what a great day you'd had. The resource teacher didn't pull you out today because of some scheduling thing that I didn't quite follow, so you were in the regular classroom all day. And although you did tell everyone you saw that you were leaving at 3:20, at 3:20 Daddy would be there, you made it.

The Principal and AP were very proud of you. I asked them if you had any idea what was going on in the classroom, though, and they reminded me that it was the first day, and it wouldn't be until the resource teacher pulled you out that we'd see if you were getting anything from the classroom.

I went down the hallway to peek in at you. I saw you sitting on the floor with all the other students, listening to a story. And then you all got up and went to your desks. And you saw me, and you told the teacher, "My mom! It's time for me to go now." And she said, "No, it's not, sit down." And you must have said no, although I didn't hear it, because then she said, "You don't say no to me. Don't say no to me. You don't say no to me. Do you understand me?" And then you probably said no again, because she repeated herself, and I really hated her in those moments.

Maybe you need someone to be tough with you and just expect you to function. Lord knows, I lose my temper with you.

You were so happy to see me, but you didn't burst into tears and run in terror from the school. You told the teacher you'd see her tomorrow. And I was feeling okay until we came home and I saw the homework you had, which is so far above your level that it's frightening, and I don't even know what to do with it. You attempted it. You did. But you're just not there yet, and it scares me so much.

Here's what I know, D.: I know that I love you more than I can adequately express. And for know, that's all I feel like I know.

Love,
Mommy

Does it seem like the ending is always a let down?

Let's start with the "previouslies."

Previously, on YGWYG, I wanted to find out what options were available for D. for this year. Even though no one would help me do that, I still prepared for the meeting and shared my thoughts with the ARD committee. Decisions were made. And then I decided not to ignore my gut, and so I wrote to the superintendent of the district. And the angels sang in the heavens, and we thought it would be great -- and then it got even better.

Yesterday was the ARD at the school.

Well. Actually, even though I was told that it would be an ARD and I received an official notice via email, when we arrived and I handed in my signed copy, they said, "Well, actually, this is not going to be an ARD -- we just want to have a discussion." Loud alarms began going off in my mind.

An ARD is a legal proceeding. A discussion is not. And as I have learned the hard way, if it's not in the IEP, it doesn't happen.

But, okay. We're there in the room with the principal, someone from the district office, the special ed teacher, and the surprise guests, D's teacher from last year and the special ed coordinator from his former school. So we may as well have the discussion, right?

I explain what I wrote in my letter. I mean, pretty much word for word. I feel that we're setting D. up to fail on several levels, I feel he needs to be in a bona fide co-teach classroom, and I have the support of the district on this.

"Well, let us explain our model of co-teach to you," they say. Their model of co-teach is precisely what they had planned and presented last year -- with one small change. Thanks to budget cuts, the school now has only ONE resource teacher instead of two.

"I totally understand what you're saying," I said. "But what I'm saying is that won't work for my kid."

And they go on to explain about content mastery, and this is the system we use, and the resource teacher is dedicated and committed, and I am sure that all of that is true. But my concern is this: when D. is in the regular first grade classroom for social studies and science, and he is expected to sit for 20 or 30 or 45 minutes as one of 22 students, and attend to the task at hand, we are going to have a problem. What does the teacher -- who was not in this meeting -- plan to do about that? How will she respond?

NO ONE ANSWERED THAT QUESTION.

They urged us to try things their way. "For how long?" we asked. At least nine weeks, they said. That's the minimum amount of time we need to see if things are working. We looked at each other, my husband and I. "Ok," said Mr. WG, "we can try for nine weeks, but we need to have a conference with the teacher no more than two weeks into the school year to get her initial impressions."

We told them that no one will be happier than we if we are wrong, and if their system works and D. thrives in the classroom and learns. Truly, we will be thrilled. But we don't think it will happen. We think it is far more likely that D. will disrupt the class regularly, frustrate the teacher and the students, and not learn anything.

To say that I am feeling let down is an understatement. I think that I have failed here, by letting myself forget that phone calls from the district office aren't the same as buy-in from the school.

I'm not quite sure how to fix this, either.

I love posts that are lists of disconnected items.

1. The house next door to mine is undergoing massive construction. The people who bought it tore it down to the frame and then started rebuilding, bigger and better. Recently, the end was in sight. I say "was," because after we came back from visiting D. at camp, we saw that they had suddenly framed an addition, and so all the trucks and what have you are back in full force. Fine. The cu-de-sac shudders under the weight of the 15 (YES I COUNTED THEM) trucks here daily, but we'll deal. But, oh future neighbors of mine, here's a tip: when you are going to do work on the shared fence between our properties, I would really love it if you would knock on my door and say, "Hey, we're doing some work on the shared fence between our properties, so when you back out of your garage, try not to hit the man on scaffolding in your driveway." Nothing like a little adrenaline rush first thing in the morning.

2. There is still time for you to enter and WIN awesome Wall or Easel Art from CVS!

3. This morning, I tried to call D's school to follow up on getting his ARD scheduled. You can read about how that worked out in the email I sent to the people listed on the web site as the principal, assistant principal, and instructional coordinator.

My son, D, is slated to start first grade at [redacted] this fall. The short version is that we need to have a new ARD before school starts. The longer version -- with important details -- follows. 

Recently, I sent a letter to Dr. Grier. He actually wrote about my letter in his weekly e-news. He forwarded my letter to the Special Education Department, and they contacted me to tell me my son's file would be reviewed, a new ARD would be held, and a more appropriate placement would be made. I called to follow up last week, and the woman I spoke with in the Special Education Department indicated:

*that she was emailing you about my son

*that someone from your school would contact me to schedule D's new ARD

*that the district absolutely recognizes that co-teach classrooms are the right solution for inclusion.

I called your school this morning and spoke to a woman who told me to "call back later." I know that this is a busy time of year and that you are busy trying to accommodate all of your students. My job is to advocate for my son, and right now that means relentlessly hounding you until his ARD is scheduled. Please call me at [redacted] at your earliest convenience. If you're not the right person to handle this, please let me know who is. 

So, within a very short time, the assistant principal called and left a message on my cell and home phones, and then the woman from the district office called, and then finally the special education coordinator called. And we have an ARD scheduled. The woman I spoke to at the school said, "We're trying to do more inclusion. The thing is, we only have one resource teacher on staff for this year, so we're going to have to work out a schedule. I'm sure we can find a way to support your son." She declined my offer of a photograph of me to hang on a dartboard in the office, which I thought was quite gracious of her.

Here's the thing: What I want for this school year is for D. to be in a classroom that has a full-time regular teacher and a full-time special education teacher sharing duties and supporting students with and without disabilities. This is the least restrictive environment, and the one that gives D. the greatest chance of success. What I don't want is a situation where D. and other special ed students are tossed into a regular classroom with a regular teacher because the school doesn't have the resources needed to do otherwise. That's not good for anybody.

So, to be honest, I am still a little worried -- and Dr. Grier, if you're reading this, maybe you can reassure me. I'd also still really like to know if a co-teach first grade classroom exists somewhere in HISD, and how I can get my kid in it. 

Reliving the 2010 Sotos Syndrome Conference

I'm seriously trying hard to keep up the illusion that the conference I attended this weekend was just as cool as, say, Blogher. Yeah, it's not really working.

BUT, the conference was really cool for a couple of reasons. I met some lovely people, heard some great lectures, and got some terrific information.

The keynote lecture was on brain plasticity, "the changing of neurons, the organization of their networks, and their function via new experiences." The short version is that everyone's brain -- including the brains of kids with Sotos -- changes over time. But if the brain's clock is set incorrectly, it will do things later than expected.

A typical child has a brain that is wired to learn to walk at, let's say, 14 months. A Sotos child has a brain that is wired to learn to walk at, say, 20 months. So when you're doing PT from birth through 20 months and the kid isn't walking, the tendency is to think that the therapy isn't helping. But it is. It's creating new synapses in the brain, and when the brain hits the magic moment when it's ready to turn on the walking switch -- the kid walks.

It was a much better talk than that -- I couldn't take notes because it was Shabbat, but trust me, it was awesome.

I met a woman who has an 18-year-old daughter with Sotos. She has a driver's license, just graduated from high school, and is going to live in the dorms at college in the fall. I love hearing things like that!

I also got great tips on handling IEP meetings and dealing with school.

So, while the Sotos conference may not have the cool factor of Blogher, it was still pretty rocking.

In totally unrelated news, Baby A. turned one yesterday. Seems like just a few moments ago I was hosting lunch a few hours after his birth. (I just reread that post, and I can't stop grinning. That was an awesome weekend.)

Healthcare Reform and Children With Special Needs

So, this healthcare reform thing. Yeah.

Here's my take -- bearing in mind, of course, that I'm not an expert. I'm not a medical professional. I'm not a lawmaker. What I am is the mother of a child with significant special needs. As such, I find it offensive and distasteful when I see that insurers are allowed to deny claims solely for business reasons.

In a denial I personally received from Aetna, I was told, "Not every medical service or supply is covered by the plan, even if prescribed, recommended, or approved by your physician or dentist. The plan covers only those services and supplies that are medically necessary and included in the What the Plan Covers section." (emphasis in original)

Here's the thing: Medically Necessary is TOTALLY DIFFERENT from WHAT THE PLAN COVERS. My pediatrician, my developmental pediatrician, my speech therapist, my occupational therapist, my son's teacher, and every medical and developmental professional who has ever evaluated him has said that his therapies and treatments are medically necessary. And yet, Aetna says:

"the plan does not cover [speech] therapy when it is used to improve speech skills that have not fully developed."

I have a hard time maintaining my composure when I read that statement. Why is it legal for a plan to exclude such coverage? Wouldn't it make more sense to cover such treatment, just as you cover it for someone who had speech function but lost it after a stroke? From a business standpoint, too, it makes more sense to cover these services for children. With intensive speech therapy in their youth, many children will go on to become contributing members of society. Without it, their chances for such success are much less.

My God, they say FLAT OUT:

"Examples of non-covered diagnoses include Pervasive Developmental Disorders, Down's Syndrome, and Cerebral Palsy, as they are considered both developmental and/or chronic in nature."

Words fail me.

WHY IS THIS ACCEPTABLE? Why is it legal for a company focused solely on profits to make medical decisions that affect my son's quality of life permanently?

Obviously, health insurance reform is necessary. But I'm not seeing how the new law helps me, or the thousands of parents like me, who have children with special needs. I mean, yes, we can get insurance coverage for them. Yay! But what good is that coverage if it doesn't cover anything they need?

(Side note, perhaps irrelevant: I'm also tired of hearing about how awesome Canada is. For some things, it's great, I'm sure. But I had a Canadian woman in my kitchen on Sunday who lives in Toronto and went to her doctor. After an exam, he told her she needed an MRI. The appointment was made for 2 or 3 months out. And when it showed THYROID CANCER, her radiation treatments were scheduled for another 3-4 months after that. What the what?)

I'd like to hear from the rest of you. Do you think the new laws will help you? How?

Because we don't do boring

Well, Mr. WG took D. to camp yesterday. It was eerily quiet in the house. Just two children. Why, we could have fit everyone into a sedan! I had big plans. I had a big deadline yesterday, so I did my work. I figured that over dinner, I'd talk to J about how he wanted to spend today and tomorrow -- I had a bunch of different options for our mornings out. The plan was for me to take the boys till about 1 pm, then come home and work while the housekeeper took them to the pool.

So, OF COURSE, yesterday, while J and baby A were at the housekeeper's apartment -- she's moving, and she had to sign some papers, and she took the kids with her -- J was running around, and he fell. And he refused to bear weight on his leg all last night. And this morning. And all day. We got an appointment with our friendly orthopaedic surgeon and went in for an x-ray.



We don't actually see a fracture on x-ray, but he's in so much pain, and the refusal to bear weight indicate that there may be a fracture we just can't see yet. So we're in a cast for a week, then we go back for a repeat x-ray and go from there.

So.... yeah.

On the bright side, it looks like D is adjusting pretty well.



I asked why he was wearing his button-down shirt -- which is really for shabbat. Turns out that this morning, he first dressed in a regular shirt, then found out they were going to shul (synagogue) for shacharit (morning prayers) (Jews pray three times a day, morning, afternoon, and night.), whereupon he insisted on changing to his "button shirt" for shul.

My friend, who is the camp psychologist, and the wife of the Head Counselor who emailed last night, texted me that we may need to rethink his wardrobe -- what with 3 visits to shul daily, he may need some more button shirts.

You know what? It's a good problem to have.

The Daily D

My Baby

To: WG, Mr. WG
From: Head Counselor
Sub: D. sleeping soundly



From: WG
To: Head Counselor

Thanks! Did he cry a lot?

From: Head Counselor
To: WG

A little bit. He was a bit homesick and asked for Mr. WG a few times. But by 9:00 he was in bed, counselors sat with him and in 5 minutes he was out cold.

Really need your good thoughts

D. leaves in the morning (at 4:30 in the morning, to be precise) for camp. For 7 weeks. My sweet boy. Are we crazy? Mr. WG is flying with him and driving him to camp, and then he'll return home the next day... presumably without my baby.

I know this will be good for us and for J. And I'm pretty sure that most of it will be great for D. But it's that little bit that I worry about. The way he'll undoubtedly tell his counselors, "I go home now?" and they'll say, "No, we're going swimming!" and he'll say, "And then I go home?"

I know, at the end of the day, that D. will survive. But will his innocence? His faith in us? And will my heart?

Exclusive Desires

Over at Love That Max, Ellen created a to-do list for parents of kids with special needs. On the list was:

Come up with cooler term than "special needs."

Because I have a deadline to meet, I thought that it would be an excellent use of my time to start looking for such a term. And so I did just that, using the "synonyms" feature in Word. Remember that episode of Friends where Joey discovers the thesaurus in Word? God, I miss that show.

Anyway. Word came up with a bunch of suggestions, but I like exclusive desires best. "My child has exclusive desires." No one needs to know that his exclusive desires generally involve garbage trucks, right?

CONTEST UPDATE: The giveaway will run until Wednesday, June 23. You MUST leave a separate comment for each entry, because I will use Random.org to select the winner, and that's just how it is. So if you used one comment to tell me more than one thing, go back and leave another one.

I always like it when the outcome of the meeting is another meeting.

Today was D's placement ARD meeting. Or, rather, I thought it was D's placement ARD meeting, because that's what I had been told. But it turns out that today was the re-evaluation ARD meeting, because they re-evaluated him in anticipation of his new placement for next year.

So.

We'd been gearing up for this meeting for a few weeks. I called the special ed coordinator when she didn't reply to my email, and she told me that I couldn't just go and view classrooms and choose the one I liked best. Fine. But I kept pressing my case for having D. repeat kindergarten, and I kept getting frustrated by hearing that that wasn't possible.

At the meeting today, I was very courteous, as was Mr. WG. As assessments were presented, we pointed out, several times, that Sotos primarily alters developmental timing. There is a decent chance D. will catch up, given a chance.

When all the evaluations were presented, it came time to talk about D. moving to a new school next year. I gathered my courage and said, "Here's the thing. I went to see the Lifeskills classrooms yesterday. Unfortunately, I saw one empty classroom and one classroom with one student, but I spoke to the teachers, and we feel very strongly that this is not an appropriate placement for D. We feel very strongly that he would do much better if he could repeat kindergarten, not in the self-contained class, but in the co-teach class, so that he would be in the general education room, but with the appropriate supports. We feel that this extra year would give him the time he needs to master the kindergarten skills. We feel so strongly about this that we cannot sign off on a Lifeskills placement, and I don't say that to threaten anyone, just to make it clear that I will do whatever I need to do to make sure that D. gets the chance he deserves to be in general education. I know everyone in this room cares about D., but my husband and I are the people who are the most invested in his success, and this is how we feel. And we need to stop saying that it isn't possible for him to repeat kindergarten and start figuring out how to make it happen."

I was shaking by the time I finished, but heads were nodding around the table. Discussion continued, and the special ed coordinator allowed as there was another option she hadn't brought up before. D. could enter the general ed first grade classroom and be pulled out to resource room for reading, language arts, and math. For science and social studies, he would be in the regular classroom, perhaps with a peer buddy assigned to help him stay on task.

So that's the recommendation that's going in to be discussed at the PLACEMENT ARD, which will be before the end of the school year, which means in the next two weeks or so, and we are extremely hopeful that this will work. And it will be work, hard work.

I am not delusional. I know full well that my kid is delayed. Significantly delayed. But I am not allowing anyone to write him off without giving him a chance. He deserves that chance. And I'm going to make sure he gets it.

Parenthood

One of my all-time favorite movies is Parenthood, with Steve Martin. When I heard that there was a new TV series based on the movie, I figured I'd tune in.

I have to admit that the pilot left me feeling a little ambivalent. I mean, yes, there was the whole special needs child thing -- if you haven't seen the show, it's revealed in the pilot that one of the kids might have Asperger's Syndrome -- but it kinda seemed like they were glossing over it. The family patriarch, played by Craig T. Nelson, who will always be Coach to me, wants certain things for his family, his kids and grandkids. And so when the boy's father tells him, "Something's wrong with my kid!" and Craig does a total about-face and becomes Mr. Supporting Grandfather, well, that didn't quite work for me.

But I kept watching, and I gotta tell you, I'm glad I did. I like that show more and more with each episode. As word of the AS diagnosis gets out, people keep telling the family how sorry they are to hear about "the situation," and OF COURSE they all do the head tilt, and if you have a kid with special needs, YOU KNOW WHAT I MEAN, and it made me laugh. And there was this one scene where someone says to the kid's father, "We heard about "the situation." If you need any help with meals or rides to school or..." And the father says, "Thanks. We can still feed and clothe ourselves." That was awesome.

In the next episode, a behavioral therapist comes to work with the kid, and there were so many identifiable moments there... the realization dawning on the mom that her kid has no friends, saying those words aloud, the mom feeling like a failure when she sees the therapist succeed at getting her son to do things, her comment that "No one gets it!" Yeah.

I like this show. I like the other plotlines, too, but this one, of course, really resonates with me.

And now we wait.

Sent: April 12
To: D's teacher, D's principal

Hi there,

In anticipation of our placement ARD for D, I would like to see a list of schools being considered, because I want to visit them before I sign off on any placement. I would greatly appreciate it if you could let me know which schools you are thinking about for D, so that I can learn more about them prior to the end of the school year, while classes are still in session.

Thank you,
WG

Received: April 20
From: Principal

Hi Ms. WG,
Please contact [redacted] regarding your question concerning D's placement for 2010-2011. D's home school is [redacted]. We look forward to seeing you soon for his ARD. thank you,

Principal

Sent: April 20
To: Special Education Coordinator

Hi,

I want to find out about the schools being considered for D's placement for next year. It's very important to me to see the schools being considered before I sign off on any placement. I would greatly appreciate it if you could let me know which schools you are thinking about for D, so that I can learn more about them prior to the end of the school year, while classes are still in session.

Thank you so much for your help!

WG


Received: April 21
From: Special Education Coordinator

Good morning Mrs. WG,

How are you? D’s home school is [redacted], and [redacted] has two lifeskills classes on that campus. If the ARD IEP committee recommends the Lifeskills placement for D, since the home school offers the placement, then [redacted] will be the recommendation. The department chair at [redacted] is [redacted]. Feel free to call to set up an appointment to visit the school. Have a great day!

Special Education Coordinator


Sent: April 21
To: Special Education Coordinator

Hey lady,

Bite me. No, seriously, WTF?

Sent: April 21
To: Special Education Coordinator

Thanks so much for your prompt reply!

I sincerely hope they do not recommend a lifeskills placement; we feel strongly that this is not at all in D's best interest. D has made an enormous amount of progress this year, and we hope to see that continue.

His developmental pediatrician also specifically stated that a lifeskills placement would not be the least restrictive environment for him.

What other options are available?

I really hate public speaking

This month is Chodesh Naim. Naim is the Hebrew word for pleasant, or nice, so it's a little play on words, because Naim also stands for North American Inclusion Month. (Chodesh just means month.)

I was asked to speak at my shul (synagogue) this Friday night. What with the whole shabbat thing, we won't have a live Internet feed, so here's the next best thing: a slightly edited copy of my speech.

Enjoy.


The Shabbat before Purim is known as Shabbat Zachor. Tomorrow, we'll read the commandment to “Remember what Amalek did to you on the way as you came out of Egypt.” But remembering is just part of the obligation. The other part is “timcheh et zecher Amaalek” – we must obliterate any memory of Amalek.

The double commandment here comes to teach us something about human nature that applies just as much to inclusion as it does to Amalek. There are two parts to this mitzvah: the feeling, and the action. The once a year remembering, and the commandment to act on our obligation in our day to day lives.

It's easy to show up at a Friendship Circle event and feel like you're doing something good. It feels really good to help out at a yad b'yad event or to attend a program about inclusion.… And those things are all great, and they make a real difference in the lives of many. But that's not really inclusion.

Inclusion is when your child invites my developmentally disabled 6-year-old over to play. Inclusion is… not averting your eyes when you meet a person in a wheelchair. Inclusion is… not speaking more loudly to someone who is blind, or making the effort to sign with someone who is deaf so that she can be part of the conversation. An online friend of mine defined inclusion as "folks with disabilities associating freely with 'normy' peers."

Inclusion is action.


Cities like New York and Chicago have lots of resources for Jewish families with special needs. Kids there can get a Jewish education that also meets their special needs. A frum mother in Chicago told me that her 12-year-old developmentally disabled son has real friends, typical kids who are enrolled in the Jewish day school where his program is housed. These kids include her son in their plans, come over to hang out, and invite him to their homes. Everybody loves my son, but he has never been invited to a playdate.


My husband told me not to say that, because he hates the idea that people will feel sorry for us. So let me be clear: inclusion is not pity. If you've spent any time with my son, you know that pity is the last thing our family needs. Understanding? Yes. A little help sometimes? We won't turn you away. But pity? No. It doesn't help. Action helps.


Here in our smaller, more intimate community makes inclusion easier, but also harder. Easier, because everyone knows D., including people who don't know me. And truly, everyone who meets him loves him, (although no one loves D. as much as his dad). Harder, because we don't have the resources to create expansive inclusion programs. Harder, because that means we have to open our hearts wider to welcome those with disabilities who would otherwise be left on the sidelines.


I believe in us. I believe in our shul. I believe in each of us, that within each of us is the power to make inclusion a priority for our shul, our community, and for klal yisrael (all of Israel). And so I challenge you to deliver. To take action. To work at inclusion, because it is work, every day. Yes, every day, to make a conscious effort to reach out to those who we all too often overlook. You'll quickly discover that inclusion doesn't only benefit people with disabilities -- it benefits you the giver, the receiver, and it builds a better world, one small action at a time.