Another goodbye.

Another goodbye.

Grammy BYesterday evening my Grammy Bennett left us. Grammy was an original, I never once met anyone with a Grammy quite like mine. She had a survivor’s tough spirit but her heart was tender. She loved every single one of her children, grandchildren, great-grandchildren and great-great-grandchildren fiercely. Even when we did something unexpectedly (or even expectedly) stupid, her pride and love of us never wavered. Every one of us always knew that we were her favorite.

Grammy & C
Last night, after having sat with her and some of the family all afternoon and evening, I followed my parents back to their house so they could see Caleb and get hugs. Before packing up for the long ride home, we sat at the kitchen table chatting. Then the phone rang. I knew as soon as he identified the number as my uncle Don’s what was coming. Grammy had been fighting for every moment throughout our visit. Once she finally settled we began filtering out. Shortly after everyone had left, she stopped fighting. Until her very last breath, despite how tired she was, she fought to protect us as much as she could.

Grammy & CalebThank you Grammy, for the endless love, the constant support and, of course, my song.

Beautiful, beautiful brown eyes
Beautiful, beautiful brown eyes
Beautiful, beautiful brown eyes
I’ll never love blue eyes again

PS – I never realized that was a real song, now I see why you never sang any of the other verses but only hummed them <3

It is IEP season, let’s make them suck less!

It is IEP season, let’s make them suck less!

Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts
Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts“by rolando000 is licensed under CC BY-ND 2.0

This is every parent of a child with special needs’ favorite time of year (and if you buy that, I have a gorgeous bridge for sale in Boston…the Zakim, you’ll love it!) Every year at this time the e-mails and facebook posts start piling up as we all try to wrap up the school year.

Schools wanting to remove services or change placements are always the most stressful aspects of the IEP process, in my experience, but every step is stressful. There is nothing fun or relaxing about sitting in a room with a table full of virtual strangers as they list all the ways your child is deficient. IEPs are about deficiencies and delays and every way in which your child differs from the “norms” that they use to measure such things. It’s emotionally and physically draining.

There are ways to make IEPs suck less however! The most important and the easiest is educating yourself about the process. You need to know your rights, your child’s rights & you need to know the proper procedures…you cannot rely on school personnel, as nice as they may be, to protect your rights, your child’s rights or even understand the IEP process. You need to know this cold.

Many parents find the entire process mystifying and confusing. I have totally been there on a bunch of occasions! The process is complicated and there are a lot of rules to follow but do not just say, “It’s too complicated. I will never understand it.” It’s that whole self-fulfilling prophecy thing, if you say that or believe that, it will become the truth. You won’t ever understand the process unless you educate yourself! It is not that mysterious once you know the basic rules.

If you can find and/or afford an experienced Educational Advocate or Special Education Attorney, that is awesome. We’ve had tremendous success using an Advocate. BUT hiring an advocate or lawyer does NOT relieve you of the responsibility of knowing your rights, your child’s rights and the proper procedures. You still need to make the effort to get that basic level of understanding down.

My first suggestion is always attending a class, the Federation for Children with Special Needs here in Massachusetts offers a variety of free courses around the Commonwealth beginning with a Basic Rights workshop. Take a course like that at the very least. It costs you nothing but the time and effort of attending and your child is worth that and so much more, right? Right. If you are not from Massachusetts find out what organizations exist in your state: State Parent Training & Information Centers.

Another favorite of mine are the Wrightslaw seminars (2014/2015 Schedule of Programs), they offer a variety of courses around the country. They are not state specific, federal law guides IEPs and state law must meet or exceed those standards. If your state law does not meet the federal standards, it is not valid. These are not cheap courses, the cost varies depending on the length of the course and the group or agency sponsoring the event, but they provide priceless information.  I have never felt more confident in an IEP meeting than I do now that I’ve attended the course. Now my questions center on appropriate goals and services for my particular child because I’ve got the basics down.

If you cannot attend any basic rights course for whatever reason, there are a ton of books and online resources to use. These are some of my favorites:

National Fragile X Foundation:

Wrightslaw – This is a great site to use if you have a specific question, the search functionality is great and will give you lots of guidance.

I can promise you, you will NOT ever regret making the effort and taking the time to get down the basics. It’s not a guarantee that you will never have a problem because schools continue to find new and creative ways to be total jerks BUT it is a guarantee that you will be able to keep them honest while protecting you and your child’s educational rights. The relief that comes from having that confidence drops the stress level of IEP meetings down tremendously. Even if your IEP is tomorrow, you have time to start…but it is easier if you have a little more time.

 

 

Ain’t no mountain high enough.

Ain’t no mountain high enough.

Today is my son’s 10th birthday. For 10 impossibly short years I’ve had the privilege of waking up every morning knowing I am his mommy. It is an honor so profound that I have trouble finding words to describe it.

A few weeks ago, Caleb requested that we take him on a hike. He then whined the entire way up Great Blue Hill. Just before we hit the summit, I asked him if he liked hiking. I suspect you can guess what his response was in that moment.

In response, I told him, “Hills are hard, dude, but you will love the view from the top.” And he did. He also whined the entire way back down because downhill may be easier physically, but it’s a lot scarier when you can see how far you could fall.

Inevitably, when I get to the end of one of these hikes I think to myself, “What was I thinking?” I’m sure I could have found pictures on-line and spared myself the exertion of the climb and the fear of the descent…for what? For a hazy view of the Boston skyline?

But it’s not about the view from the top. My life with him will never be about the view from the top…it will always be about the journey we are on together. Yes, there are times we can rest and enjoy the fruits of our labor but that’s not why we spend weekends hiking together, not really. We do it because I love the feeling of his hand in mine as I help him over an obstacle. We do it because he loves moving forward and meeting people on the trail. We do it because we love to have the chance to be proud of each other. Our hikes are full of praise and support…him supporting and praising me as much as I do him.

“Good job, Money! You did it!” “Thanks bud!”

“You OK, Monkey?” “Yeah, I good.”

My absolute favorite part of the hikes though is seeing him leave me behind. I remember all those years of him clinging to my hand tightly, terrified I would let go and he would slip. I remember the in between years when he knew I would always be one step behind him, giving him the confidence to let go…if he slipped, he knew I’d catch him. Now suddenly we are in a new decade and I am realizing that 10 is actually a mountaintop for us. It was an unexpected joy to realize that we’re now in an new era…one in which I am more and more often many steps behind him, calling out encouragement as he seeks his own way up.

I thought we’d be so much older before this happened. I thought I would be sadder as well. I had no idea that every “I got it.” would just redouble my awe of him, my pride in him, my love for him. I had no idea this would become my new favorite view of him…

Hiking

I wonder what he’ll teach me next?

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!

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!

About that trip to DC

About that trip to DC

Somehow March is over and I’ve still not shared much about that trip to DC. Part of it is that whole black seed of misery thing and part of it is that I have told the stories so many times it feels like everyone in this state and maybe a few others have heard them already. For those of you who have not been subjected to the repeated stories already…

The trip to DC was awesome. Caleb spread his glitter through the hotel, the Metro, various restaurants, museums and, of course, the halls of Congress. It was an amazing trip…

  • Caleb reminded us that airport security is not for people like him. You know, rock stars don’t stand in lines. It was not a long line, but that does.not.matter. By the time we got through the security area I was reminding Eric about that pact we made LAST TIME we flew to not ever do that again. We renewed that pact.
  • When we landed in DC, Caleb immediately stood up, clapped his hands and cheered, “Nice flying! Nice flying!” which the crew seemed to appreciate. Then he asked, “Go again?” Can we at least make it to the gate before we start thinking about leaving, please?
  • Caleb looooooved the hotel. He said, “Nice room!” every time we returned to the room.
  • We had to teach Caleb how to use the key card and how to find the hotel room in case we got separated. I was 90% sure we were going to lose him at least once in an elevator. (We didn’t! At least not on the elevator. I might have misplaced him in the lobby a time or two. Shh.)
  • DC uses 4 wheeled vehicles with plows and men with shovels during “Snowmageddon.” They save the plows for…I’m still not entirely sure what they saved the plows for. Definitely not for plowing the roads, that was obvious.
  • The Metro is clean and easy to use. Caleb approved. Eric had a little trouble mastering the ticket situation. My tip for DC travel…just buy a one day pass. Srsly.
  • We visited the Natural History Museum and the Air & Space Museum. Of all the countless treasures we saw, true to form…Caleb’s favorite part of the museums were the elevators.
  • There might possibly be an elevator out of service at the National Air & Space Museum. I have no idea how that happened.
  • The trip didn’t really start for Caleb until Holly arrived. In fact, she was Caleb’s favorite part of DC 3 hours before she even got there. My little man has amazing taste.
  • Caleb has mastered the art of scoring free desserts. He doesn’t share.
  • Caleb has mastered the art of taking selfies with strangers. Cool strangers, at least.
  • Caleb is not allowed to eat scrambled eggs ever, ever, ever again. (Thanks to the FX parents who cleaned *that* up for me. Gross.)
  • Caleb can shake hands & fist bump all day long.
  • With access to YouTube & DieselDucy, Caleb can attend a 4 hour training session.
  • With access to YouTube, Caleb can repeatedly interrupt a 4 hour training session with his belly laughs. DieselDucy has a really funny laugh. Apparently.
  • Caleb got to ride on his very first party bus. Yep, really…that was our ride to the Capitol.
  • Caleb did a frog impression on the floor of the House of Representatives…surely not the most ridiculous thing to ever happen there.
  • Caleb very wisely elected NOT to throw a snowball at his new friend, Representative Gregg Harper (R-MS)
  • Caleb made it through an ENTIRE DAY of shaking hands, passing out business cards and charming the socks off everyone he met.
  • Caleb was very happy to go home after 5 long days.
  • When we landed in Boston, Caleb stood up, looked around at the other passengers and instructed them, “Clap!” He has no patience for those who don’t appreciate the joys of air travel.
  • When we left the airport and began driving home, Caleb began giving us directions…to return to “Terliddle B.” Which would be where we had picked up Holly on Monday afternoon. He was unimpressed that we didn’t bring her home with us.

It took the next week for Eric and I to recover. As amazing as the trip was, it was 100 times more exhausting with Caleb along. We knew already that we’d take him again but then we Caleb received this…

What? We’ve been going for years…Caleb has been once…and he gets the handwritten letter from the Congresswoman. Nice. I’m not at all jealous! I sent this picture to Caleb’s teacher and, last Friday, she told me that Caleb had written a letter back to Congresswoman Clark.

In case you can’t read it, it says:

Dear Katherine,

Thank you for the note. Please come visit my school.

Your friend,

Caleb (I think that’s a picture of a dog next to his name…)

I’ll let you know when she comes to visit…there is no way she says no, right?

Rockslide.

Rockslide.

Two nights ago I had this dream, I was standing at the top of a mountain. It was a barren, granite mountain top like those you often see in Maine. Suddenly the earth shifted under my feet and the rocks slid in a jagged, irregular path down the slope. I was left standing on what remained, knowing I needed to find a way down to the valley below where everyone else waited. It was then that I realized my Papa was with me and was waiting for me to lead the way down.

I began walking down, weaving around boulders and sliding over rocks that rolled beneath my feet. Every step of the way, Papa was behind me. I finally reached a point where there was a sheer cliff in front of me and a hill so steep and unstable behind me that I couldn’t backtrack. I was stuck.

In a blink, I was back at the top…back at the beginning with Papa waiting for me to try again. I did. Over and over and over again, I zig-zagged my way down the hill only to end up in the exact same situation. My frustration and my exhaustion increased each time but still Papa stood and waited, and I walked on.

Finally, I was too tired to try again. It was then that Papa reached out and grabbed my wrist. It reminded me of a time when he and I were sitting at his kitchen table talking and he had reached out and wrapped his hand around my wrist. He was able to encircle my wrist with his thumb and pinky finger with room to spare. The memory warmed me and I felt my hope rising. He grabbed my wrist firmly, and he spoke to me. I watched his mouth moving and started crying when I realized I couldn’t hear him. Whatever advice he had, was lost to me. Whatever happens next, I have to decide. That little seed of hope was gone and I woke up.

I’ve put forth a lot of effort doing the same things over and over and over hoping that this time I don’t end up here…stuck with no way forward and no way back. I have been stuck for a very, very long time…in fact, I wrote in 2011,

“It’s like…I am this great big ball of AWESOME but inside is still this teeny, dark seed of misery. I keep hoping will just die if I don’t feed it. So I take my happy pills and I turn my attention to other, much more important stuff and the AWESOME rules. Then I think, “Surely it’s gone now!” and peek.

Dude, I’m that idiot in horror movies who just HAS to open the basement door because it’s been quiet for SO long, surely the ax murderer is gone! D’oh! *sigh*”

I am so very tired of this endless loop. Somehow I have to figure out how to rid myself of that dark seed of misery. I need to do it, I can’t just keep waiting for it to vanish. I just wish I knew how…