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Two Children, One Spectrum: Communication

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two children part 2

 

If you missed my last post, this is a new series about two children on the autism spectrum. Jen, from Anybody Want a Peanut, will be writing about her son, Moe, and I will write about Connor as we explore similarities and differences in several categories. We hope to show people how very different two people with the same label can be, and how important it is for services and supports to be individualized.

 

First, let’s start with an introduction of our boys:

 

Moe:

My son Moe is seven. He has a diagnosis of Autism Spectrum Disorder (ASD). He is severely affected. He does not have any other official diagnoses, although certainly apraxia of speech and Sensory Processing Disorder would be on the list. He has global intellectual delays.

 

The only way I can describe Moe is he is an atypical autistic kid. He is very challenging to teach and standard methods for working with autistic kids typically do not work for him. He is a sweet, funny, mischievous kid who also has a lot of challenging behaviors.

 

 

Connor:

Connor was diagnosed with severe ADHD and Asperger’s when he was three. He is now nine-years-old and, since the changes to the DSM, he now falls under the catch-all diagnostic category of autism.

 

We knew Connor was different as early as a few months old because of difficulty with sleeping and excessive motor activity. Before his diagnosis we often joked about ADHD because we were almost certain he had it. The Asperger’s diagnosis was a bit of a surprise to us, because he didn’t exhibit the “typical” autistic behaviors of flapping, lining up toys, toe-walking, or lack of social engagement. But there were other red flags, such as not pointing or waving until he was almost two, having meltdowns over seemingly trivial issues, scripting of lines from television shows, and rigidity about various routines.

 

 

Now for the main topic of the post, communication:

 

Moe:

Moe is completely non-verbal. I do not mean he has a few words, or that his language is scripted or echolalic. He has no words. He can make the sounds “ba,” “ma” and sometimes “pa” or “ah-pa” when asking for things. Moe is physically capable of making other sounds, but he does not put them together in a way that is meaningful for communication. After several years with a fantastic private speech therapist, but with little progress and increasing behaviors in therapy, the SLP was no longer able to work with us.

Moe mostly communicates through pointing and hand leading. He knows a few signs, but tends to fall back on one catch-all sign that roughly translates to “help-open-more-want.” He can imitate signs when modeled. We tried an iPad app (LAMP Words for Life) for a while, but we have recently gone back to using a photo-based PECs system.

Moe has some receptive language and understands simple requests. He likely understands much more than we realize.

 

Connor:

There’s not a day that goes by where I’m not profoundly grateful that Connor communicates so well, especially when so many of my friends would give anything to hear the sound of their child’s voice. There is another side to the communication coin, however, and that’s when your child NEVER STOPS communicating. Questions, questions, more questions, thinly-veiled debate, intense negotiations, all day, every day, from the time he wakes up to the time he goes to bed at night, that is my child. The most pressing questions seem to always coincide with my need to use the restroom. Every. Single. Time. I’ve had phone conversations with friends who ask, at the end of the call, whether it’s “always like that.” What they want to know is whether Connor is always so constantly in need of my attention and interaction. Yes. Yes, it’s always like that. But as much as it can chip away at my sanity sometimes, there will always be the part of me that sends up a silent little word of thanks to the universe that he can talk, that he WANTS to talk, to me.

 

That doesn’t mean that communication has come easily. I remember vividly when he was younger, and I would ask him for some privacy. He would always look so confused before he began hammering me with questions. “Where is the privacy? I’ll go get it and bring it to you.” He couldn’t understand that privacy was a concept, an idea, not an actual thing you could hand over to someone, like a box with a giant red bow on top. Although he’s mastered the idea of privacy now, and actually requests it for himself, we still run into similar issues with other figures of speech. It’s taught us a new way to think before we speak, considering whether our words could have other meanings.

 

Summary:

Although we’ve only just covered the first topic, you’re undoubtedly getting a sense of the differences between our boys. Each has their own particular strengths, challenges, and needs. Each one autistic, yet one has almost no language while the other is a landslide of constant communication. I can’t help but imagine how different our parenting experiences have been as we’ve worked to support and help our children to the best of our abilities.

 

The next post in this series will run on Thursday, December 4th, and will cover the topic of feeding issues.

 

Also, Jen and I encourage you to write along with us! If you’d like to write about your child in each category, please leave a comment to this post with a link to your post/page.

 

There Aren’t Parenting Manuals for This Crap

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There are lots of books about raising autistic/ADHD/Asperger’s children. Usually the books are very clinical, describing the disorder and accompanying delays, along with some advice pertaining to toileting, communication, and education. Or the books are more myopic in nature, written by a parent with a limited perspective. There’s nothing wrong with these books, however, I find that none of them really provide the kind of advice I need.

Let me tell you a story.

Yesterday I picked up Connor and noticed that he was wearing the back-up shorts from his backpack. We talked on the way home and I learned that he’d had an accident at the after-school program. I was surprised, since this hasn’t happened in a very long time. I asked why he didn’t use the restroom, and he said “I just didn’t make it on time, mom.”

I felt so bad for him. It was easy to imagine the embarrassment he would feel, as a fourth grader. And we all know how mean other kids can be. “Poor kid,” I thought. I tried to put it out of my mind as we went about our nightly routine.

But today when I picked him up, a different story unfolded. I learned that the plumbing system was shut down all night, into this morning. Connor admitted to the teacher that he had flushed a piece of paper down the toilet, causing it to overflow and get him wet, and shut down the whole system.

Speechless.

We got in the car and I pulled to the side of the parking lot to ask him what happened. He told me there was a flier hanging in the bathroom that said “Always remember to flush after using the restroom.”

“Everyone always flushes the toilet, so that paper annoyed me. It doesn’t need to be there. It’s been there for a long time, and I wanted it gone so it wouldn’t annoy me anymore.”

*deep breaths, count to 10*

I said “can you explain to me what you were thinking when you decided to flush it down the toilet? I mean, didn’t you stop and think that it could plug up the toilet?”

“Mom, I just can’t help it. It’s my stupid brain, it works against me. It’s not my fault.”

This is where a parenting manual would come in handy because this is treacherous territory. I do not know what it’s like to have severe ADHD. I believe him when he says that his brain works against him, because who hasn’t felt that way at times? But the part about it not being his fault? As a parent, I can’t let that go. He is a very capable child, and I constantly navigate between providing the right amount of support and expecting a certain amount of accountability.

As I drove home, I puzzled over the right way to handle this situation. My kid, basically, said “fuck you and your signs, THIS is what I think of your signs!” and promptly caused a plumbing calamity. Of course I couldn’t help but remember that I work in a building with a few hundred people, and fliers are posted from one end of the building to the other, including the restrooms. Mentally, I refer to these fliers as “company propaganda.” Although we don’t have fliers reminding us to flush, we DO have fliers reminding us to wash our hands. I’ve stared at those papers hundreds of times, thinking how moronic it is to have to remind grown adults to wash their hands.

We got home and had a talk about consequences and the need to learn how to ask yourself questions when you’re in the middle of an impulsive thought. Things like, “Will this get me in trouble?” Or, “What else can I do if this annoys me?” And we talked about how, when he’s an adult, he will be expected to know how to deal with his impulses and take responsibility for his actions. Nobody will be tolerant of the excuse “it’s not my fault, it’s my stupid brain!”

And finally, I told him that there would be no computer or iPad until his behavior improved (because there have also been a number of smaller incidents this week.). He cried a little, but recovered quickly. I reminded him that he should feel lucky that TV wasn’t also taken away.

But damn, that parenting manual sure would have been handy today. I mean, who the hell knows how to handle crap like this? Yes, I know, he has impulse control problems and difficulty with forecasting events. I get it. But damn it, I’m not raising him to be coddled and willfully indulged, I’m raising him to be a competent adult. I’m not going to sell him short and think that he doesn’t have the capability, because I believe he does.

As I write this, I can’t get that damn song out of my head. You know the one…Signs, by Tesla (originally recorded by The Five Man Electrical Band). Here, enjoy it…

bathroom sign

I Hurt

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It’s easy being angry at injustice. It feels right, especially when it’s a cause greater than yourself. I can channel all my rage and anger into beating my fists against the walls of inequality, knowing I’ve put enough of myself into it when the blood runs freely down my fingers.

 

Humor comes easily, too. It would be impossible to put one foot in front of the other if I gave in to the feeling of defeat. You can’t make me cry. I’m able to find humor in the most unlikely situations, and the darkest of places. Laugh with me, friend. We will lose ourselves if we become too serious.

 

What’s not easy is pain. Pushing the words “I hurt” past my throat feels like giving away a part of myself. No. That’s not even right. It’s like…like I just trusted you with the most vulnerable part of myself and hoped you wouldn’t drop it and break it.

 

I had no business being surprised by the results of the state testing. No matter how much I shore up the dam of emotions, they just seem to spill out around the edges.

 

It doesn’t mean anything. Life isn’t about how well you do on tests. Not everyone tests well. It’s only a snapshot, of that moment on that day.

 

Still, I hurt.

 

(It’s less gut-wrenching to type it, than to say it.)

 

There will be extra classroom accommodations put in place for the next school year. They will focus on helping him in those areas…because the test told them to. I could have done that. I did do that.

 

So many words, they all blur together.

 

I’m glad for those supports, truly. Sometimes though, I just want my boy to be a boy. Just a boy with a sassy mouth and a new pogo stick for his birthday.

 

Just once…to be defined by his strengths, not his weaknesses.

 

The other day in the car, Connor began singing along to the radio.

 

“And I am feeling so small

It was over my head

I know nothing at all.”

But I didn’t start crying until I’d dropped him at school.

Because, there in the car alone, I hurt.

 

Hey You Guys, I Invented Something! At Least I Think I Did.

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As a child, Sunday nights were a mix of anticipation and dread. I looked forward to watching The Wonderful World of Disney each week, but I knew that bedtime followed the end of the show, and that meant the very next thing would be going off to school the next morning. I still dread Mondays, when the weekly rush of getting Connor and myself out the door will begin.

 

This past Sunday evening I was feeling particularly unsettled. We don’t do ADHD medications on the weekends, both to give Connor a break from them as well as to try and maximize their effectiveness during the school week. Unfortunately that means there is a lot of correcting of behavior and constant reminders about respect and personal space. Sometimes I don’t feel good about the weekends because it feels like we spend more time punishing or criticizing behavior then actually having fun together.

 

I was thinking about how frustrating it is to tell him something, and have him turn right around, completely forgetting what he was just told, and do the undesirable thing again. The phrase “working memory deficits” flashed through my mind, and then I had an idea for a game that would  practice memory skills AND build his self-esteem.

 

I have no idea if a game like this already exists. If it does, someone should let me know so that I can stop saying that I invented it! But if it doesn’t already exist, then hells yeah I’m taking credit for it.

 

I also have no idea if it will actually improve memory. I’m not a doctor, people! But it certainly can’t hurt, and the game will still be providing the child with a positive feedback loop, which is a good habit to start. At the very least, it will help with self-esteem.

 

I’ve not tried this yet, but am going to implement it this next weekend. If any of you have a chance to try it out, be sure to let me know how it goes. My hope is that it will help Connor learn how to hold something in memory, like “don’t slam the door”. But I also want him to know, despite the many, many reminders about not doing this or that, that he is still an awesome kid.

 

I wrote out the game on a handy sheet that you can print or share. Be sure to let me know how it works for you!

 

memory game

 

 

Parenthetical Advice

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Hi. November was a crazy, hectic month between the holiday and trying to keep pace with NaNoWriMo. Prior to that, there were a couple of school meetings that I wanted to write about, because the result was getting some better support and extra accommodations for Connor.

The beginning of the school year was quite rough, and I called a meeting in September to talk about supports. One thing that came up was that after I dropped off Connor in the morning, he wasn’t showing up in class until 10 minutes after the bell. I asked the principal if she thought we should address the issue (The reason I called the meeting was mainly to discuss this very issue. But there’s a game of charades that goes along with parenting a special needs child. You can’t make demands and voice your disapproval and really gain anything. That’s because it’s all a game of ego-stroking. Much like real life. So one must smile like a half-witted court jester, and ask seemingly stupid questions, like “Do you think we should address the issue of my autistic child going missing for 20 minutes each morning?” When the answer is, OF COURSE WE SHOULD. But the staff at the table know full well that they are in a precarious position and the district could face a lawsuit, so you sit there and politely ask, “What should we do?”). The principal was very willing to work with me and decided to appoint a teacher to be on hallway duty and be responsible for being the point person for Connor, and ushering him to class.

With that issue resolved, we moved on to homework. The pressure of a 7-hour-day spent holding himself together as best he can builds up and releases when we get home. Having him sit and do homework that goes on for more than 20 minutes just causes more frustration and meltdowns. So I decided to ask the staff about homework accommodations (Hey. Kids with IEPs are supposed to be provided with accommodations. It’s like, the law. So basically I sat there and asked for something which I knew we were already entitled to, but in doing so I transferred the illusion of power across the table to the people that could make this the best year ever, or worst year ever, for my son.) We were able to negotiate limiting math homework to 15 minutes. In addition, since writing is such a challenge for Connor (And it will likely always be a challenge. I’ve had the school conduct two OT assessments in which he barely scored in the passing range and has not “needed” OT provided by the school. So that is an important point to absent mindedly bring up at convenient times like this. “Well you know he struggles to write, even though he hasn’t needed OT, according to the school eval, but maybe we can find a way to accommodate him so that I don’t go requesting an expensive independent eval?”) I asked if his nightly Reader’s Response question could be answered via my recording it, instead of him having to write it out. I stressed that the point of the Reader’s Response was to get them thinking critically about what they read, so removing the pressure of writing would make it easier to focus on that. The teacher agreed and now he reads nightly and I use the record feature on my phone to ask the question and get his answer. Then I just email it off to the teacher. So much less pressure and unnecessary time spent trying to reduce his answer to the fewest amount of words because he detests writing so much.

 

But then I got careless, and I asked about ESY. The principal felt it was far too early in the school year to consider it, and she mentioned the “regression” tool that they use to decide if a child needs ESY. I casually mentioned that my understanding was that it wasn’t the only criteria for ESY (I admit it, I was pretty assertive. A couple of summers ago Connor was kicked out of two summer camps, due to behavior. Last summer, having ESY half day and camp the other half, he did beautifully. If you comb through all the legal junk, you will find that if there is a serious disruption that causes hardship, that is also a qualifying factor. In short, I’d already done the homework, but I had to back pedal and stroke egos, like a girl in a massage parlor specializing in happy endings.) Since we were due to have the official IEP the following month, I acquiesced and told the principal that I was fine with revisiting it then, because I wasn’t sure if I was correct anyway, and wanted to read through the department of education policies to make sure I wasn’t speaking out of turn, (In other words, I let her know I was coming with a huge stack of paper, with all the legal parameters highlighted for her convenience.) and that I appreciated her willingness to table it until then.

 

At our official IEP meeting in October, the very first agenda item was the principal informing me that he did, indeed, qualify for ESY! I thanked her profusely, and encouraged her to have another cookie. (Yes, I brought cookies. I actually really like his teachers, very much. And I want them to know I appreciate their hard work. Also, it’s a strategy to give every impression that you are kind, thoughtful, and reasonable. Reasonable is the important adjective, because if you ever have to push things to mediation, you don’t ever want someone to offer an impression of you as being overly emotional or controlling. And you want them to know that you will scratch their back, if they scratch yours.)

 

So far, the school year is proceeding well. We have a nice routine going, and both the gen ed and special ed teachers are fabulous. His gen ed teacher even went the extra mile. Connor had been having an ongoing feud with another boy, that Connor would fixate on every day. The teacher pulled the other boy in and talked to both of them, asking them what things they like. She found some common ground, and got them to shake hands and call a truce. In the past, issues like this have been ignored, or just considered “normal kid squabbles.” But it was more than that to my kid, and she really got that. As a result of her taking the extra time to do that, we have avoided further issues.

 

These are the people that support our kids every day, and it’s important to try and have a good relationship with them. Teachers work hard, and the more we can support and encourage them, the more likely they will be to listen when we feel our child needs some extra help. It’s the administrators that are more complicated and require more sophistication to gain their support. (Let’s face it, they have a budget to follow, and they’re going to play hard ball to meet that bottom line. You’ve got to be prepared and have a solid case to get what your child needs. And if you can make them feel like it was their idea, all the better.)

 

Hope you find some of this helpful when you’re tackling challenges with your child. Make no mistake, this is HARD. But quitting is not an option. Failure is not an option. You need to read up on your state laws regarding special education, as well as knowing IDEA. And remember, even if you need to actually pull in an advocate or lawyer, a batch of chocolate chip cookies couldn’t hurt either.

 

 

When Parents Fall

I fell hard last night, you guys. It’s really hard for me to admit that.

The last couple of weeks have been rough for Connor at school and the after-school program. Without getting too specific, his hyperactivity has been out of control. Every task, Every. Single. Thing., has required herculean efforts of wrangling him to get it done.

Day after day of negative reports, coupled with another day of homework struggles was enough for me to snap. I left the room sobbing and shut myself in the bedroom. Hubs was working late again, but was on his way. I told Connor I needed a time-out, which was an understatement.

One of my personal challenges is black-and-white thinking. When upset, I tend to see things in a worst-case-scenario kind of way. “If I can’t fix this, it will never get better and his future is doomed.” It’s not rational, logical, or helpful. But when I get that far into my emotional response, logic doesn’t matter.

Really, I don’t care for being emotional. I’m generally pretty stoic about things, because I know that progress can only be made by being calm and focused. But everyone has a breaking point.

I reached out to a group of friends that share this kind of parenting journey with me. Within minutes I had numerous text messages and phone calls. I cried, ranted, and unloaded every sad, angry, and hopeless thought I had. And I wasn’t judged. Nor was I given false hope. Instead, they took each piece of me, dusted it off, and put it back into place. They reminded me of what I needed to do to keep moving; call a school meeting, move up the doctor’s appointment, make some accommodations for homework. And without doing it intentionally, they reminded me that there were so many families out there facing far tougher challenges than I am.

There was never any danger that I would have hurt myself or anyone else, but my “breakdown” lasted about an hour, before slowly starting to dissipate. Today I’m left wondering what happens to people that don’t have someone they can call, someone who understands their unique challenges? What about those that are dealing with a situation far more extreme than mine?

Today I’m back to being stoic as I make phone calls and plans to address the issues. But I’m still worried about you guys. Do you have someone you can call if things get bad? Do you have a safety net if you start feeling like it’s too much to handle?

Here are some general numbers of support. Please put these in your phone, or hang it on your fridge. Don’t let yourself get caught in a bad emotional storm without a life jacket or two.

help numbers

One last thing. Don’t ever let anyone tell you that online friends aren’t “real” friends. Some of my best, most precious friendships are with people I’ve never met in person.

Frustrated. No, not that kind of frustrated.

UGH! Frustrated. Just frustrated.

But I’m not supposed to say that, am I? I mean, expressing frustration about my child is verboten in autism land. Whatever, call Mayor McCheese to give me an attitude ticket then.

I suppose I should expect this. The beginning of the school year is always a challenge until we get the routine down. Still, after coming off the high of a fantastic summer, I foolishly thought we’d avoid the usual bumps in the road.

Every day we get the same report from the after-school program: playing around inappropriately in the bathroom, repeatedly jumping off the stage in the cafeteria, being mean or inappropriate when playing with others. And every year I talk about building up and rewarding the desired behavior; using a token or ticket system, praising desired behavior, etc.

Still. How many more years will we be working on not crawling under bathroom stalls, or standing completely in the urinal (side note: EWW!). It’s not that he doesn’t know the rules. He knows them very well and can recite them. He’s just so IMPULSIVE. And after school, meds have worn off. Cue intense bouts of tomfoolery and shenanigans.

The frustrating part in him knowing the rules and routines is that you begin to feel like he’s purposely just giving the rules the finger. Sometimes I’m downright positive he is doing that. And it’s really hard not to sympathize with the staff for being frustrated. By third grade, kids should not be crawling on the skeevy bathroom floor.

What’s that you say? Maybe the program is too much for him? Maybe we should make other arrangements? Easier said than done when you work 8-5 and have a mandatory 8 hours of OT every week. This process would be so much less stressful if I didn’t have to hold down a job, but I do. So I just better keep on balancing this high-wire act over here.

This post? Not entertaining AT ALL. Sorry about that. Here, look at this picture of cats. People seem to like cats.

courtesy of iwastesomuchtime.com

courtesy of iwastesomuchtime.com

I guess you see now why I don’t like cats.

It’s wine time, people. Have a happy, shiny, feel-good something something whatever.

Summer Wrap-up

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Today is the first day of third grade for Connor. I’m so excited and optimistic. He’s moved from the primary school to the elementary school and, so far, the teachers seem really sharp and willing to support him as much as possible.

 

Staff with the right attitude make all the difference in the world.

 

That isn’t just hyperbole, but a truth I’ve experienced first-hand. We just wrapped up the BEST summer vacation we’ve ever had. Ever. Sure, part of it is growth and maturity, combined with the right medication, but those things don’t magically remove all challenges. The lynchpin of the success was the staff. And to think that it happened by accident.

 

See, I wasn’t quick enough this year when it was time to enroll for summer camp. The adaptive camp we used last year fills up quickly. When I called, they only had three different weeks with openings. I took them with a knot in my gut, knowing the rest of the time would have to be spent at the school district camp. The school district took over a couple of years ago, after many issues with the Y running the camp. Still, I was worried that we were in for another experience where they staff to the bare minimum, and can’t deal with kids that don’t fit inside the box.

 

I was so wrong.

 

From day one, they greeted us with smiles and positive attitudes. Some of the staff already knew Connor from the after-school program, and were enthusiastic about working with him. They were staffed with an extra person in case additional support was needed. The staff actually had experience with kids on the spectrum (imagine that!).  They matched him up with the staff person with the most background in special needs. He worked amazingly well with Connor. If there was a challenge that arose, he would greet me with his game plan to address it.

 

I’m almost swooning just thinking about it.

 

One day I picked up Connor and was greeted with a note. His staff person knew that writing and spelling was a challenge for Connor, so he decided that a great way to wrap up the day would be to help Connor write a note to me that summarized the day’s events. I’ll admit it, I teared up. These camp counselors were nothing short of amazing.

 

When I would complement them on what a great job they were doing, they would remind me that it’s their job to make every child’s camp experience a success.

 

IT’S THEIR JOB.

 

And they were right. But I’d grown so accustomed to having to train and teach and coerce and beg staff to work with my child, that I simply had no expectations left. And it shouldn’t be that way. No parent should dread the thought of summer to the point of feeling physically sick.

 

The reason I’m telling you this is because I want everyone to know that it IS possible to find supportive staff for our kids. It isn’t just possible, but should be the norm. It’s important to keep fighting for programs to really be inclusive for our kids, and not just throw out that term as lip service.

 

I didn’t do much writing this summer, and the reason was because things were so pleasant and calm. It was nice to just enjoy the ebb and flow of the hot days, without a sense of dread or fear of what was happening at camp. 

 

Don’t settle for less. Let staff know that inclusion is possible and can be successful. I promise, it’s worth the fight.

Boys of summer. (photo courtesy of dreamstime.com)

Boys of summer. (photo courtesy of dreamstime.com)

July Things

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Hey, remember when I used to blog?

Yeah, me neither.

But I’m not complaining. This summer is sailing by fairly smoothly. I’ll take that any day over years past, when we scrambled to find backup summer camp options. I still have PTSD from the summer after kindergarten.

So, catching up. We barbecued hamburgers and hot dogs on the 4th of July. That’s pretty much it.

Oh. And I threw my back out…picking up a shampoo bottle in the shower. How’s that for a visual? Yep, so I’m getting a lot of sitting done. And reading. I’m on book 3 of Game of Thrones, and I’ve started watching the series. This only reinforces my deep mistrust of other people, since I’m convinced that everyone has their own devious agenda. I should maybe find some lighthearted reading, no?

Also, it’s really hard to go to the bathroom when your back is out, but let’s not talk about that.

So during my sitting, Connor decided to cool me off with this little, handheld fan. Even though I told him I was cool enough, thankyouverymuch. But then ADHD got the better part of him, and he decided to see what would happen if he turned the fan on in my hair.

The chunk of knotted-up hair I pulled out is actually bigger than it looks.

20130711-075844.jpg

On the upside, he felt really bad about it. He commenced combing my hair, and telling me that I look like a princess. That was nice, even though I was pretty sure I only looked like a partially bald troll.

So anyway, that’s my summer so far. How is yours going?

This is What Inclusion Looks Like

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Since Connor was little, he has always attended some kind of day camp during the summer time. Since we both work, this is necessity as much as a recreational opportunity.  But camp has always been something I dreaded each year.

A couple of years ago, he was kicked out of the YMCA summer camp. Although it was promoted as “inclusive,” I was often met at the door with exasperation and complaints about Connor’s behavior. I supplied staff with handouts, explanations, behavior support tools, and a busy box. I had lengthy explanations on how to use positive behavior supports to motivate behavior change. But I was told they didn’t have the staff to provide that much support, and they just couldn’t deal with his challenges.

We found a camp through a local recreation center that was specifically created for children with disabilities. For the last two years, Connor has attended camp there, and has done well. The staff are trained to support children on the spectrum, and their ratios allow them more hands-on, individualized support.

But this summer I blew it. I knew they started reserving spots for camp in March, but I was slow to get it together and sign him up. By the time I called they were completely full, except for three weeks. I took those three spots, and reluctantly signed him up to attend the rest of the summer at the school district summer camp. They no longer used the YMCA, and instead they created and staffed their own district day camp. Still, I was bracing for another summer of hell.

I couldn’t have been more wrong.

The lead staff already knew Connor from the after-school program. She greeted me the first morning with a smile, and an assurance that he’d be just fine. I handed her a racquetball and told her that he would work for having time to play with it.  We talked a little bit about incentives and reminders, and I told her that each week he works to earn a new toy or Skylander figure, for having good behavior.

I have been greeted with a smile every single afternoon. The first week, which is always a challenge because of the new routine, I would be greeted with positive information first. Then they would tell me what kinds of challenges there were, during what activities, and then their plan for supporting and changing the behavior.

Do you guys understand how major that is? They would identify a problem, brainstorm a plan for addressing it, and greet me with a summary and their solution. These are people that, to my knowledge, don’t have specific, intense training on autism or other disabilities. They are using a common sense approach, an approach that is positive and respectful, and they are doing it willingly and happily because, as she said to me, “it’s our job to make camp enjoyable for everyone.”

It’s not an exaggeration when I say that I very nearly cried the first day I picked him up. I’ve dreaded pick-up for the last 5 years because it is almost always a negative experience. How pathetic and sad is it that a mother would dread the thought of picking up her child, because she knew she would hear a litany of complaints about her son’s behavior? And how demoralizing must that be to Connor, to always be talked about in a negative way?

It’s not just the camp director that is making a difference. The other day when I picked up Connor, I was handed a note. The front was Connor’s writing, telling about what a great day he had. On the inside one of the staff wrote his own note, to tell me how they are working together on Connor controlling his body (you all know that this is code for respecting other people’s bodies and space), and that he’s doing a great job. The staff came up with this idea on his own. This tiny, little activity is HUGE. It’s huge because it helps Connor practice his writing and fine motor skills, it helps him to reflect on his day and his choices, and it reinforces the desire to want to have good things to write in his note to me.

THIS IS WHAT INCLUSION IS SUPPOSED TO LOOK LIKE.

Instead of having Connor secluded in a special group, all with disabilities, he is in a group with typical and non-typical peers. It’s like I finally found the Holy Grail of programs. They get it. They WANT to help Connor shape positive behavior. They WANT to problem-solve. They willingly make little changes and tweaks, here and there, because the little changes make a big difference in how the day goes.

More than that, they genuinely like my boy. Rather than seeing him as a child that deliberately makes bad choices, they see him as a boy with a disability who doesn’t always have the skills or tools to make better choices. And they seem sincerely happy to see him each day, and give him hugs and high-fives.

I won’t be spending the summer so stressed out that I’m awakened by frequent nightmares, nor crying over the chunks of hair I’m losing. Instead, I get to spend the summer thinking of ways I can thank the staff for their kindness and professionalism, and ways I can duplicate the program so that this kind of acceptance and inclusion becomes the norm, rather than the exception.

As a start, I will ask you to share this post – not because I care about stats, but because I want as many people as possible to read about and see that it IS possible to run an inclusive program. I don’t want other parents to go through what we went through, ever summer, worrying and counting the days until school started. It’s not supposed to be that way.

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