I was going to simply update the file attached to Back to what now? but then Caleb’s teacher of the last two years returned her portion of the Positive Student Profile. It brought tears to my eyes as I read her “tips” on educating and supporting Caleb.

How often do you find a teacher that sees your child just as you do? A few more times for us, I hope. I am so glad I asked her to contribute to it!

I know I keep talking about that Leadership series (here, here, here, here, here, here and here) but it was life changing and I’m still adapting to my new outlook…so bear with me while I continue processing.

One of the activities we did during the series was the “Yes, and” vs the “No, but” game. We all stood in a circle, we were told that we were to pretend that we worked for the richest company and the richest person in the world and that the CEO wanted to reward all of the employees so we were going to brainstorm a reward.

The first round we were required to say no to whatever the person next to us offered and come up with an alternative. We started off big with week of vacation and ended 20 people later with lots of excuses and a plaque.

For round two we were instructed to say yes to whatever the person next to us offered and add to it. We started small with that stupid plaque we ended round 1 with and ended up with company cars, a company island, our own condos on the island, a company jet, weeks and weeks of vacation, and lots of money. Round 2 was SO much more fun.

We were encouraged to take this “yes, and” attitude out into the world as we plan for our kids’ lives. One small change in thinking can have an astounding effect on everything. Seriously, e.v.e.r.y.t.h.i.n.g! Next week I’m going to play the “yes, and” game again…no one else is aware of it yet but I’m determined that it’s the only acceptable outcome.

We have had some issues over the last few months with Caleb not getting access to recreational programs he deserves to be part of. We did a lot of angry e-mailing, there were lots of long phone calls to lots of different people, wayyyy too much of my time and wayyyyy too many missed opportunities for Caleb before we came to a one time accommodation. One time. All that work…all that time…all that stress for ONE field trip. If you want the longer version you can read it here: The same story told twice.

Next Tuesday there will be a meeting to discuss not only our issues but the issues other parents in the city have had in trying to do what we dared to do…ask that our kids be included like everyone else. Who would have thought that in 2014 that it would be a revolutionary idea, but there you have it. Wish me (and them) luck, please…it’s hard work changing the world! He’s so worth it though…

Two weeks ago, a notice was sent home in Caleb’s backpack. The notice went out to all of the children at his school and informed them of a series of field trips and activities that would be taking place during vacation week. Parents were asked to return the permission slip and a check to cover each of the days that they wanted their child to participate. So easy, right?

Now, I want to share with you how that simple notice threw me (and therefore my friends and family since they all had to deal with me) into a two week slide into frustration, disappointment and anger.

I made a decision in March that I was no longer going to limit Caleb’s opportunities based on my perceptions of his abilities or my assumptions of how other people viewed him. I decided that I was going to let him spread his Glitter. That decision has profoundly affected me and my willingness to take what feel like risks in order to let Caleb shine. I know, and you know, how awesome he is. I want everyone who comes into contact with him to have the opportunity to see it, to be changed by him…if only briefly. He has a way of being that makes people smile. Who am I to deny anyone even that momentary lift of spirits? It may very well be the moment that turns their attitude around for the day. You never know what might be the trigger for that.

I started the Glitter Project small, by not calling Caleb away from people he approached. I chose instead to facilitate his communication rather than stifle it. I translated for him when necessary and just smiled when he managed on his own. I was amazed by how it changed my feelings about going out into the world with him. Plus, the results I saw encouraged me to take what felt like bigger risks…mainly sending him on 3 of the 4 outings over school vacation week. I knew he would be with new staff, some friends and some potential friends. I won’t lie, I was nervous and uncertain but I felt strongly in my heart that I owed him this chance.

The day after receiving the notice, we told his teacher that we wanted him to participate and shared the activities we thought would be successful for him. Things did not go as planned…our experiences over the next week lead to me writing this…sorry it’s really long!

I’m hearing voices again.

Two months ago I posted, Do You Hear Voices? and discussed the various negative voices that have been living in my head for so long and how I hoped to rid myself of them. I’m happy to report that it’s been working! I have good and bad days but I’m getting really good at stopping those voices in their tracks and refocusing my energy on living my life rather than criticizing myself constantly. Overall, I feel less stressed than I have in a long time. It’s a beautiful thing.

I have a new one that has been creeping in over the last two weeks however and I need to shut her down. I’m going to call her Roxxie the Rationalizer. Roxxie is a tricky sort because she seems so reasonable. She’s not telling me anything overtly negative and her voice has sounded suspiciously like my own. In fact, I’ve caught myself thinking of her as my “head” as opposed to the true me who I think of as my “heart” …which makes her really dangerous, in my opinion.

So what types of things does Roxxie say to me? She says things like, “Of course Caleb needs extra help, these things take time!” or “Does it really matter if he goes to the zoo? He’ll be just as happy at home.” or, the one I hate the most, “He doesn’t know he’s missing anything!”

Wait, what? It was that last thought that made me realize I wasn’t listening to my “head” because in my head, as in my heart, there is no excuse for excluding my child from something. NONE.

Let me back up, in case you missed my Facebook blow up. This week here in Massachusetts is April vacation. Two weeks ago we received a notice via the “backpack express” about some super fun vacation week activities that were open to students at his school. Given my commitment to helping Caleb spread his “Glitter” I immediately thought two, maybe three of the four events sounded like fun for him. There is a trip to Jump On In (bounce house place), a trip to the Roger William’s Zoo in Rhode Island and a field day and movie at/on school grounds. Fun, right? Plus, the other kids who will be going are all schoolmates so he’d get to spend some extra time with friends and maybe make a few more.

I told Eric that night that I wanted him to go, he was on board. The very next morning we took the flyer back to school and gave it to his teacher and told her we wanted Caleb to participate in 3 of the 4 days. We were a full week in advance of the deadline. I was positively giddy over this. It was a little scary but it’s also my deepest dream to hand my child the world, I’m no different than any other parent in that regard. I could never know if he’d be able to do this without trying and I am not willing to risk underestimating him anymore.

It didn’t feel like a declaration of war. I walked away glowing with excitement for this opportunity for him to participate in the wider community. It turns out, I was wrong.

It may be an opportunity, I am trying my very hardest to keep that thought at the front of my brain when my heart is breaking, but it was never an opportunity for my child to included. Why so dramatic? It’s just 3 days of field trips that he had no idea were even happening, right?

Wrong.

It is one more time when we’ve been turned away for being too different. In a school where there are messages of acceptance and friendship taped to the walls in recognition of Autism Awareness Month, he’s still not fully accepted. He’s not seen as a part of the wider community. He is still on the fringes. What is breaking my heart is the faith I had built in this school over the last three years was baseless. I was so proud of myself for taking this step, for putting this out there and making things possible for my son. That’s a long, long fall.

I had separated this school from our district and told myself pretty lies. This school does an amazing job at including everyone. There are lots of kids on the spectrum at the school and everyone is equally valued. It’s not true. It’s not and if it isn’t true here will it ever be true anywhere?

So what happened? Nothing. We began to get push back almost immediately, there were concerns over sending him on a trip without a familiar staff person. There were concerns about staffing in general because he has special needs. We went into the weekend knowing that it was actually going to be a battle to make this happen, that’s a really crappy feeling by the way…to have rejection looming over your head.

Each morning we got an update from Caleb’s teacher, they had no solution. It wasn’t going to work was the increasing consensus. Except for me. I was positive it could be worked out because 1. Caleb is often, per teacher and staff report, the easiest child in a group that has typical peers and 2. It would be illegal to exclude him. I continued to push.

Last week I was finally passed to the inclusion specialist for the program running the vacation day activities. A few things were established.

1. A child’s IEP must be reviewed prior to participating.
2. The child must be observed prior to participating, to assist in deciding what accommodations are needed.
3. If needed, additional staff must be hired.
4. They have had trouble hiring staff this year. (I’m willing to venture this is every year, not just this year.)

There was never any chance whatsoever that my child was going to be included in the vacation week activities. It was open to the entire school. But not him and not any other child with an IEP who wasn’t part of the after-school program. There was no similar restriction on the typical children. They were all always invited. Their parents could send in a check and a signed slip and never give one moments thought that they would be turned away. Why would they? It was open to the whole school! Except for those it wasn’t open to.

Now, I’m sure in your mind you’re thinking all the same things Roxxie was telling me. Of course he needs accommodations to go on a trip like this! Of course he needs extra supervision to be safe! Of course he needs to be evaluated and matched with someone appropriate!

But guess what? Even accepting all of that as true…why did they not leave time to go through this process? Why were we told a week in advance if they need weeks or months to prepare? These trips, were not set up two weeks ago. These trips were planned in advance by city staff that are assigned to one of TWO SCHOOLS in this district that have a significant number of kids with ASD in the population. These trips were planned in advance by people who were well aware of the spectrum of needs at this school and funded by state dollars and they excluded children, my child because of his disability.

Roxxie the Rationalizer can say what she will but he was discriminated against and left out because of his disability. That’s pretty harsh, isn’t it? Now imagine that was your child, your heart, who was having a door shut quietly but firmly in his face. Harsh doesn’t even begin to cover it.

So this week, my son stays home with his dad and his friends are off on adventures. I will turn this heartache into fuel for change because I really want to get back to a place where I believe this again:

This school does such an amazing job of including kids with special needs, and autism in particular, that the rest of the school just accepts them. It’s no big deal to play chase on the playground with a kid who screeches excitedly. He’s just another kid.

Lest you think this is an isolated incident, after they finished playing chase Monkey approached two boys who were playing volleyball over the main gate of the school. He stood and watched them, he loves to watch kids play, but they weren’t satisfied with that. They decided he was going to play too and made sure to throw the ball to him.

Such a little thing maybe, playing chase or ball on a playground, but the acceptance of Monkey with all his little quirks is so casual that it becomes a huge deal to families like ours. And it starts with the principal who decides that we belong and that learning Monkey’s name is important. It starts with teachers who buy into that idea and decide that creating acceptance of all students is just as important as math.

(From: He does belong. If you don’t believe me, ask that kid. – December 2011)

I have not been so very angry in a long time. This level of anger is only possible when it comes to people I love being mistreated. I shared this with someone I trust, she is a teacher and I knew that she would give me honest feedback. I asked her to tell me, was this too harsh? Her response was incredibly thoughtful, she reminded me that there is a true commitment to inclusion at this school. That there are dedicated staff who believe fully in the same vision I have for seamless and 100% inclusion in all aspects of the community. That there are children there who are amazing and inclusive and loving. I needed to hear that because my anger and disappointment was blinding me to those facts.

I decided that sharing this blog, as it was written, would be unfair and hurtful to people who truly love Caleb and who truly support our family in many ways big and small. SO, if it was unfair and hurtful, why would I share it anyway?

I realized that the feedback that I was getting from other families and other school professionals was fueling my anger. I was getting feedback that told me that there are a LOT of kids out there, in this district and across the country, who are experiencing this same treatment and worse. The unfairness of it was infuriating, the fact that it is widespread both locally and nationally was even more so…but hurting the very people I need to support me to make the change won’t do any good. So let me tell you this story again.

I’m hearing voices again.

Two months ago I posted, Do You Hear Voices? and discussed the various negative voices that have been living in my head for so long and how I hoped to rid myself of them. I’m happy to report that it’s been working! I have good and bad days but I’m getting really good at stopping those voices in their tracks and refocusing my energy on living my life rather than criticizing myself constantly. Overall, I feel less stressed than I have in a long time. It’s a beautiful thing.

I have a new one that has been creeping in over the last two weeks however and I need to shut her down. I’m going to call her Roxxie the Rationalizer. Roxxie is a tricky sort because she seems so reasonable. She’s not telling me anything overtly negative and her voice has sounded suspiciously like my own. In fact, I’ve caught myself thinking of her as my “head” as opposed to the true me who I think of as my “heart” …which makes her really dangerous, in my opinion.

So what types of things does Roxxie say to me? She says things like, “Of course Caleb needs extra help, these things take time!” or “Does it really matter if he goes to the zoo? He’ll be just as happy at home.” or, the one I hate the most, “He doesn’t know he’s missing anything!”

Let me back up, in case you missed my Facebook blow up. This week here in Massachusetts is April vacation. Two weeks ago we received a notice via the “backpack express” about some super fun vacation week activities that were open to students at his school. Given my commitment to helping Caleb spread his “Glitter” I immediately thought two, maybe three of the four events sounded like fun for him. There is a trip to Jump On In (bounce house place), a trip to the Roger William’s Zoo in Rhode Island and a field day and movie at/on school grounds. Fun, right? Plus, the other kids who will be going are all schoolmates so he’d get to spend some extra time with friends and maybe make a few more.

I told Eric that night that I wanted him to go, he was on board. The very next morning we took the flyer back to school and gave it to his teacher and told her we wanted Caleb to participate in 3 of the 4 days. We were a full week in advance of the deadline. I was positively giddy over this. It was a little scary but it’s also my deepest dream to hand my child the world, I’m no different than any other parent in that regard. I could never know if he’d be able to do this without trying and I am not willing to risk underestimating him anymore. I walked away glowing with excitement for this opportunity for him to participate in the wider community.

We began to get push back almost immediately, there were concerns over sending him on a trip without a familiar staff person. We went into the weekend knowing that it was actually going to be a battle to make this happen. Each morning we got an update. It wasn’t going to work was the increasing consensus. I was positive it could still be worked out and I continued to push.

Last week I was finally passed to the inclusion specialist for the program running the vacation day activities. A few things were established.

1. A child’s IEP must be reviewed prior to participating.
2. The child must be observed prior to participating, to assist in deciding what accommodations are needed.
3. If needed, additional staff must be hired.
4. They have had trouble hiring staff this year.

There was never any chance that my child was going to be included in the vacation week activities with those policies in place. No child with an IEP who wasn’t already part of the after-school program could be included. There was no similar restriction on the typical children.

Now, I’m sure in your mind you’re thinking all the same things Roxxie was telling me. Of course he needs accommodations to go on a trip like this! Of course he needs extra supervision to be safe! Of course he needs to be evaluated and matched with someone appropriate! Accepting all of that as true, they did not leave time to go through this process needed. They needed weeks or possibly months to prepare depending on the level of support needed.

These trips were planned in advance by city staff that are assigned to one of two schools in this district that have a significant number of kids with ASD in the population. The program is funded by state dollars and the Department of Human Services provides the inclusion support. These trips were planned in advance by people who should have been aware of the spectrum of needs at this school. They should have been prepared to support any one of those children.

It’s disappointing to feel excluded and it did not need to be this way. Clearly there needs to be better communication among the district, the program and the Department. Some people dislike the statement that it “takes a village” but for those of us who live in this world with so many different experts and agencies…we know it’s true. I’m going to write a few letters sharing our story offering a few suggestions on how we can avoid having this happen to any other families.

So, again, why did I share that original version? Because I need professionals to understand what this means to families. I need them to know how alienated and angry a simple lack of communication and planning can make me/us.

And why did I reconsider and re-write it? Because I need parents to know that if I’m committed to making positive change, and I am, I cannot burn blow up bridges no matter how cathartic it might feel in the moment. We all have a role here, the professionals and parents alike. None of us can do everything or even think of everything. We need to work together and the first step is we have to understand that behind every title, every name on a piece of paper, and on the end of the line on every phone call there is a human being with feelings. Then we need to have a conversation and save the ranting for Facebook 😉

Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…

The photos are awesome.

Look at that face!

The concentration!

The head bent over his work!

The smile for his teacher! Pure and total awesomeness, right?

Eric was immediately just so P.R.O.U.D. of him, of how hard he works, of how far he has come, of how much he is teaching us all about what is inside of him.

But what I saw in those photos was what we have lost. What he has lost. What I saw was the little boy he could and should have been if only I hadn’t passed the wrong X to him. I saw a long life of him trying hard, harder than anyone should have to try, and still falling short of his peers. He doesn’t seem aware of it now, but I know he will be in the not too distant future. He’s very, very socially aware. He loves to do what the other kids are doing. One of these days…he’s going to know…and that’s what broke my heart. It will always break my heart.

I wouldn’t give up a single curl on that head for any amount of money in the world…and I still hate what fragile X has done to him. Seven and a half years post diagnosis and I want to be done with it. Done with all of it. I want to not even know fragile X exists. That is a pretty good explanation for being so quiet here, I suppose.

This morning, Eric and I spoke to the 3rd grade at Caleb’s school about fragile X and Caleb. We did this last October but we wanted to get in there early this year so, one week in, and we’re done. Caleb’s teacher and the other inclusion teachers were all very excited that we were coming in to do the talk.

The kids got excited when I pulled this out…

It’s hard to go wrong with a light saber as far as 3rd graders are concerned!

Before I get into the details, I want to give proper credit here…we do this because Holly Roos convinced us that it was important and because she gave us all the tools that we needed. She has, for years, shared ideas and advice on how to do this and I’m so very glad we took on the challenge. I strongly recommend checking out Talking with Students About Fragile X Syndrome. She shares her Powerpoint slides from the presentations she’s given on the topic and there is a podcast.

A couple people asked last year about what we said and I shared very generally (Dialing it down a notch) because you really do have to customize this to fit your child and your situation. I’m sharing the entire “script” I wrote out this year with commentary to perhaps spark your imagination if you’re stuck. I had NO idea what we were going to say until Monday night and this was all written last night. I am procrastinator…hear me roar.

This is color coded and printed on note cards which we carried with us. Blue is Eric, Pink is me and Purple is the free for all where we both chimed in. Anything in black is either commentary or what the kids suggested/added.

Introduce ourselves, some of you might remember that we came in last year…who here remembers? Who remembers what we talked about? (Caleb, fragile X.) This year, we are going to talk about something a little different. We want to talk about…THIS light saber! (The reaction to the light saber was awesome, there were gasps and cheers!)

This light saber is pretty cool, do one of you want to come try it? Isn’t it cool how it lights up? Shake it hard…isn’t it cool how it changes color? (We didn’t invite anyone to come up, it was too crowded, I demonstrated it to more gasps and laughter…be flexible and just go with it!) I want you to take a minute to think, what kind of game would you play with it? What would you pretend? Don’t call out the answer, just keep it in your head and remember it, OK?

Now, what if…we take the batteries out? What happens? No lights, no sound. Remember what you were going to pretend with it a few minutes ago? Could you still play that game with it? Probably, right? It might be a little different…it would surely be more quiet which I’m sure your teachers would like (more giggles)…but it would STILL be fun, right? (One kid looked a little devastated to consider the loss of batteries, which almost made me laugh.)

This light saber, with all the lights flashing and fun noises, is like you guys. You don’t have fragile X. Your brains and your bodies all work together to turn you guys into pretty awesome, fun kids. Caleb is like the light saber too, but he DOES have fragile X so sometimes his brain and his body don’t work together exactly the same way…so he’s kinda like the light saber without batteries. But he’s still pretty awesome and he’s still fun to play with.

What is fragile X, what does it mean? We get asked this a LOT by grown-ups…most people have never even heard of it. Fragile X is a genetic disorder, do you know what that means? Genetic? We are ALL made up of lots and lots of genes. They decide what color your eyes are, what color your hair is, how tall you will grow…all sorts of things. If something is genetic it means it’s passed in your genes. And we can’t pick our genes…whatever is in those genes is what we get…we can’t just decide to be taller or shorter, can we? Caleb didn’t choose to have fragile X…it’s just how he was born. It also means that you guys can’t get fragile X. You can’t catch it like a cold and you won’t ever wake up with it, OK?

So we are all lots and lots of genes and fragile X is one of those genes. It’s a gene that every single one of us has. Most of you are like Eric, you have between 5 and 45 repeats of that gene…which is just perfect and that gene does what it’s supposed to do…it makes a protein that makes your bodies and your brains work just right.

SOME of us have more repeats of the gene. I have…110! That means I’m a “carrier” of fragile X. My gene still works mostly right and it makes that protein. If you all look up at the ceiling, then look back at me…it just feels normal, right? Maybe just a little silly? If I do that…I get dizzy. It makes me feel like the floor tilted under my feet. It’s called vertigo, and I have it because I am a carrier. My brain only works mostly right. (I’m pretty sure this is Eric’s favorite line in the entire presentation.)

Then there are some people, like Caleb, who have even MORE repeats. Caleb has…does anyone want to guess? (after a few low guesses someone jumped straight to 1,000…which made me think, “Well, that escalated quickly!”) He has between 800 and 1,000 repeats. If you have more than 200 that gene stops working, so Caleb’s gene…it doesn’t make that protein that his brain and body need to work just right. He has fragile X syndrome.

So let’s talk about what that means for Caleb. We did this last year too but I bet it will be a little different because you guys have grown up and changed in the last year. So has Caleb.

Let’s list things you like to do at home (basketball, homework, art & music, hockey, origami, golf/sports, TV, play with friends, go to the park, go to the pool/beach…origami TWO kids said this, the teacher was just as surprised as we were.) Awesome.

Let’s list things you like about school. (math, art & music, gym, recess, lunch, science, writing, reading) Wow that’s a pretty cool list…I’m seeing some new stuff on here!

Now, let’s talk about this stuff…do you think Caleb likes all this stuff? No, probably not all of it because everyone likes different things, right. Do you think he’d like (Go through the lists, deciding if he’d like it or not and why he might not.)

You know what I’m seeing here? I’m seeing that he’s a lot like you! (Actually one of the kids noticed this and SAID IT FOR US! I could have cried!)

But there ARE things that he does that are different, right? Let’s list some of those…let me start! Let’s look at this light saber again. Do you think Caleb likes this? He’s actually a little bit scared of it because it is SO LOUD! One of the things that’s different about him is that he doesn’t like loud sounds. He has like super-powered hearing and loud things like this…they are scary. So let me fix this while you talk. (I sat down and stuffed cotton balls in the end to dampen the sound while E wrote out the next list.)

Let’s list some of the things about Caleb that are different (He covers his ears with his hands, calm body (lack of), plays by himself (it was declared when we got to this point that he DOES NOT play by himself, he plays with other kids now), makes funny noises, flapping his hands…we tried to  suggest ways they could help. Eric, very brilliantly, asked them to flap their hands and describe how it felt. We talked about the fact that Caleb likes that feeling, several kids liked it too, lol. This was the LONGEST part of the presentation; once the kids got started they asked tons of questions. One girl asked about the dentist, another asked if he gets stuck on words like he gets stuck with song lyrics in his head, lol)

You know what, we had a really long list of ways he’s like you but only a few ways he’s different, don’t we? He’s a lot more like you than he is different! Isn’t he? It’s OK to notice that he does things that are different. If you ever wonder why he does something the way he does, it’s OK to ask a teacher about it or you can ask us. So while it’s ok to notice and to ask, I sure notice sometimes! It’s not EVER OK to make fun of him, it’s not OK to make fun of anyone who does things differently…OK? (One of the kids asked here if Caleb gets mad when other kids make fun of him, I pointed out that he has feelings just like everyone and it would hurt his feelings just the same way. Then I asked the kids if they’d ever seen Caleb mad? Nope. I pointed out that Caleb is a pretty happy kid and likes to laugh, he doesn’t get mad very often. And he doesn’t, thank goodness he’s more like Eric here!)

We heard from your teachers last year that you guys did a GREAT job at learning and at being friends with Caleb and we want to thank you for that…and we really want you to keep up the great work. I’ve noticed that he’s changed in the last year, he’s learning new things all the time and a lot of that is because of you. So I want you to pay attention to your teachers, work hard and make good choices because he’s watching you and learning and we want him to make good choices too (I threw the “good choices” in based on some discussion prior to our talk between the teacher and a couple students who apparently haven’t made very good choices in friends in the past and had to be separated this year. It’s a very good point to make and I’m glad I was reminded of it.)

Now, I want to talk about this light saber ONE more time. Two of you here know where Caleb got this…where did he get it? At the circus. Last year Peter and Jesus Enrique went to the circus with Caleb for his birthday. It was the FIRST time Caleb was able to go and sit through a circus like other kids when they didn’t lower the sound or make the lights less flashy. He didn’t do it exactly the same, did he? He had to use his iPad a lot…but he did it! And he talks about going back all the time. He never could have done that without Peter and Jesus Enrique there to help him. His friends, you guys, make ALL the difference in the world.

I pushed the button on the light saber again to demonstrate how quiet it was now. Do you think Caleb likes it now? (Lots of nods.) Yep, it’s a lot quieter…can you hear it? (A girl in the back shook her head.)

We then thanked them and started to say good-bye when one of the boys said, “Are you going to leave it that way?? With the cotton?” Ha! Yep, because it’s just the way Caleb likes it.

After we left the room we stopped outside the door out of sight and listened to the teacher take back over. She talked about how Caleb is still getting used to her so it’s hard for him to talk to her. She said this is where they could be helpful, because Caleb knows them already. *AWESOME*

This was just too much fun. It took about 45 minutes, with the biggest piece of that being the question and answers part. I was a little nervous before but once we got going it was pretty easy…and it was really, really fun to hear how the kids see him. They really do understand him and like him.

Now it’s your turn! If you’ve ever done this, I know a lot of you have, I’d love to hear what you shared…we do need to do this again next year!

Eric relayed the following story to me when they picked me up after work.

Caleb’s teacher (who is awesomeness, dipped in awesomesauce…she came to hang out with Caleb Monday after school so we could go to volunteer training for the fragile X clinic!) has been working with him on not blurting out questions…also on his quiet voice (*snort* I’m not sure he has a quiet voice!) They’ve been working on him raising his hand and waiting to be called on before he answers or asks a question. Today, this happened at snack:

Caleb raises his hand, “A question, I have a question.”

After being called on, “I want some chips, please?”

After being told no on the chips, “Doritos? ‘Ritos?”

After being told no on the Doritos, “Frrruit Snacks?”

After being told no on the fruit snacks too he was offered a choice, which he answered in a disappointed tone, ‘Goldfish.”

So many things about this are amazing, the impulse control, the quiet voice, the polite requests and acceptance of the refusals…but NONE of those are as amazing to me as this.

Someone said no to C.A.L.E.B. CALEB!

I bow down to his teacher. That kid would have ended up with chips, ‘ritos, fruit snacks and, most likely, “10 dollahs?” to boot if he’d been asking me…

Want to see something else amazing?

A thank you note to us and an I’ll miss you note to Caleb from his teacher. And this is his gen ed teacher, not the one who came to hang out with him for a few extra hours in her spare time…yeah, he’s a pretty special kid.