The same story, told twice.

The same story, told twice.

These bridges wont burn themselvesTwo 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 😉

Have you met my child? He’s a human being.

Have you met my child? He’s a human being.

Fenway FunAttending the Family Leadership Series has been life changing, just as my friend Patricia had said. I have, for most of Caleb’s life, defined myself as a special needs parent. I have framed all of my goals around his special needs and his special education rights. My child’s needs aren’t all special, nor are his rights…my child still has basic human needs and basic human rights. People seem to forget that. I sure did. Doesn’t that sound awful?

When people ask me what I want for my child I say I want him, happy and loved. In my head I am thinking, safe and protected. I think most people think “safe and protected” when they think about what we owe to those with special needs or intellectual disability. And we do owe them a safe place to live, we owe everyone a safe place to live. My child doesn’t have a special right to not be abused…that is a basic human right. My child doesn’t have a special need for a home…that is a basic human need. Does my child need special accommodations to achieve these basic rights and needs. Yes, he does.

None of us trust in the inherent goodness of others to protect our children when they are out in the world. We teach them (hopefully) to protect themselves. My son may not ever be able to do that. My son may, like many with intellectual disability, be under the impression that friends don’t hurt us. That’s a pretty reasonable belief. Friends don’t hurt us. But what if someone we think is our friend, hurts us? You and I could say, that person isn’t our friend and we wouldn’t let it happen over and over (hopefully.) This is where Caleb has a special need. If he believes friends don’t hurt us, and a friend hurts him then clearly…well, in his mind, then he couldn’t have been hurt because a friend wouldn’t do that. It’s absolute thinking. It makes him a rule follower, it also makes it impossible for him to protect himself as fully as you or I.

So, in order to protect his basic human rights and needs, he will need special accommodations. He will need someone to make sure he isn’t being hurt physically or emotionally. He will need someone to make sure he isn’t robbed blind. The entire conversation about Caleb and his future are so much different with this one change in thinking. Caleb has basic human rights, he has the same basic human needs as I do…as you do…he needs special accommodations to provide for that. No more, no less.

By focusing on special needs or special education, I have been shortchanging my child. I’ve been limiting his world. Have I been limiting it for the right reasons? I guess, if there’s ever a “right reason” to not insist on protecting your child’s basic rights, it would be love…and I do love him so. My parents don’t love me any less, though, and though I know it has hurt their hearts to watch me struggle and fall…they’ve never questioned if it was right to “allow” it or not. My son has that same right. He deserves (what is now my favorite phrase ever…) the dignity of risk.

A new friend I met through the Family Leadership Series commented regarding her son who is home bound and home schooled…that she is institutionalizing him at home. Ouch! But what an amazing observation. I have always wanted more for Caleb than an institution, so why am I planning his days and his future with just a slightly modified version of that for him? Why continue to separate him rather than insist on him being included? Why am I not pushing to open the whole world to him?

“Dunno,” seems like a pretty crappy answer. “It’s easier,” is even worse.

Captain Sneakypants.

Captain Sneakypants.

Every morning before school Eric and Caleb do their morning shower routine. Caleb likes to wait until the last possible second before he will actually get into the shower. He will lay on the floor or pretend to use the toilet usually, and….the speed at which he gets undressed…I have no idea how Eric tolerates it. When I do his shower, it’s all “Quick feet, dude. Hurry up! Get in!” None of which is great with his anxiety, I know. So there you have the reason I don’t do the shower routine often.

Caleb will also find excuses to leave the bathroom. This morning there was an empty shampoo bottle that had to be recycled right that second. Caleb grabbed it and walked to the recycle bin and back, I stopped paying attention when I realized he had his pajama pants around his thighs…he had gotten distracted mid-way through the undressing process. Totally normal around here.

Showers were finished, breakfast was eaten, school and work clothes were on and I sent Caleb to put on his shoes and socks. He cheerfully agreed and took off in search of his shoes but forgot his socks. Also totally normal around here. I went in his room and grabbed a pair of socks. As I left his room, something on his dresser caught my eye…

Captain Sneakypants

I picked it up (to make sure it was empty) and showed it to Eric without comment because this too is totally normal around here. This child, who actually doesn’t really like ice cream, is obsessed with these Ben & Jerry’s pints. Let me rephrase that….this child is obsessed with this:

Baby Cow

I don’t know why but he loves that cow! We wash the cartons out thoroughly before we toss them in the recycling bin because we know that no matter what, if he sees one, he is going to insist on carrying it around while he hugs and kisses the cow and calls it “awww, baby.” *kiss*kiss* It makes me smile.

As we were putting coats on, I noticed he was holding the carton. He always grabs his stuff before he leaves the house…the stuff varies day by day. Sometimes it’s a notebook with a highlighter tucked in the spiral binding, sometimes it’s his phone and a set of keys, sometimes it’s garbage. This morning it was garbage. Fine and dandy.

We have a strict no garbage in the school rule so, when we arrived at school, I opened his door and immediately told him to put the carton down. “It will be in the truck this afternoon, bud, let’s go.”

He put the carton on the seat behind him and very, very, very, very slowly slid out of his seat. With his arm behind his back. As he stared right into my face. Seriously. Eric was snickering because he could see what I had already assumed…that little stinker was hiding it behind his back!

“Caleb, you are not ever going to fool me with that.  I will always catch you.” I mean, really, he was going to have to walk right past me to get to the sidewalk. His Money isn’t a fool.

He continued his slow slide out of the truck and kept his arm behind him. Finally, I leaned in to take the carton so he could get on with the morning at something approaching a normal speed. When I looked behind his back though…I laughed. Loudly.

Captain Sneakypants was holding that empty ice cream carton behind his back but during that slooooooowwwww slide he had also put it under his coat! Duuuuuuude! I was very proud of him.

And, yes, I still took the carton away from him. As we crossed the playground, I finally stopped laughing and turned to him, “I will always catch you when you hide things behind your back. You should try slipping stuff into your backpack on the way over.”

Eric couldn’t believe I was giving him tips on how to sneak things past us…but hey…I love to see developmental progress and this was so, so, so very typical. OK, maybe his Money is a bit of a fool!

Today is World Autism Awareness Day!

Today is World Autism Awareness Day!

If you are seeing a lot of people wearing blue or turning blue on social media (and they are not discussing Obamacare) it is most likely due to the fact that today is World Autism Awareness Day!

This morning I was walking up the stairs at Caleb’s school behind a father and son when the son suddenly dropped to the floor like a limp noodle and blocked the stairs. The father calmly pulled his son to his feet and was greeted with fists. There were two ways to go here…I could have turned to Eric and rolled my eyes or huffed about having to wait a microsecond while this dad got his son safely out of the way OR I could smile sympathetically, let him handle it and then go on my way. I chose option 2 and within a few seconds I was up the stairs…no harm, no foul.

Yesterday, the ASD program at Caleb’s school attended the Circus of the Senses. They had a great time and Caleb even let me ask 2 questions about it before he told me, “I’m all done.” That’s huge, he hates answering questions!

Anyway…the kids all took the Red Line to get to the circus, this was easily the most highly anticipated part of the trip for Caleb. Sometimes it can take a bit of time to get yourself through the gates at the T stations, often they are crowded and when you have a bunch of kids with no impulse control…well…it can get a little extra chaotic. There was a young man in his mid-20’s who got caught behind the kids and chaperones and he found his way blocked. There were two ways to go here…he could have begun muttering under his breath some not so very nice things and tried to push his way around the group or he could have waited the extra couple of moments and then gone on his way. This young man chose option 1 and, when he tried to pass the kids, one of them moved unexpectedly and he TRIPPED over the child and ended up face first on the floor of the T Station.

So, if you ever find yourself in a situation where you can’t tell if you are looking at a child who is out of control because they have autism or if you are looking at a child who is out of control because they are brats…the safe bet is to just assume autism. Just take a breath, pull your head out of your ass and thank your lucky stars that, while you might be minorly inconvenienced in that moment, the child is under a massive amount of stress while he or she fights their body to do something you do every single day without even thinking about it.

So there is my autism tip of the day…

Just zip it and move along.

Happy World Autism Awareness Day!
index