An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

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Luck

I was chatting on Facebook with a cousin of my dad’s whom I don’t know altogether well, and he said he had been following my posts about autism, in particular a link to this post, describing how much of a struggle some parents of children on the spectrum face every day.  He said he hadn’t realized how bad it could be, and hoped we didn’t face those kinds of challenges.

I filled him in a bit on The Boy, and how well he’s done in his new program, and predictably (albeit sweetly), he said how lucky The Boy was to have such a strong advocate for a mom.

The truth is, I am the lucky one to have The Boy.

I look at him every day, amazed that this boy is mine, that he has half my genes, that he has grown so big and so clever and so funny.  That he has grown into this fascinating human being with moods and thoughts and interests ranging from cars to space to recording and sound editing.  That he is so capable, and so vulnerable, yet so strong himself to be on the spectrum and deal with all of his challenges with fairly little complaint.

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I just wish I could know him better.  I wish I could communicate with him more easily about his deep thoughts and feelings (as if he would, pre-teen that he now is).  I wish I understood him better, and I feel like I have failed him when I can’t understand something he is trying to make me understand.

I love this boy of mine, more than I ever thought a human being was capable of loving, and the bonus is that I like him, too.  I wrote recently about everyone falling in love with him, and most people who get to know him end up knowing he is a great kid.  The kind of kid it is easy to be strong for.  My job is simple, and I’m the lucky one.

The Tuba is Here

tuba practiceIt seems the crisis has passed, although I have had to email the band director to find out the current assignments, and to ask him to make changes to his last quarter grade based on the tests I had sent him on video.  I think “maintenance” will be required within our new arrangement, but I don’t think they will again try to steamroll me into something that just isn’t right.

The tuba has arrived, and I again thank all of my readers that tried to help.  I actually found a decent one on ebay, and it is a smaller, easier size for The Boy to handle.  It isn’t pretty, but it does work, and hopefully we can work from where we are now.

According to the director, The Boy has begun playing more in class, but is still having problems starting with everyone else.  I had asked to come in and take video to do some reverse modeling, as suggested by the autism specialist, but the director was not comfortable having me come in to do that – just wanted me to “explain” to The Boy when to start playing.  So we continue to play this game, with him pretending like he is making accommodations and modifications, when he really just doesn’t get it, and isn’t going to lift a finger to try.

But I see progress, and I’ve stopped them from going down the usual path when they encounter a kid who “doesn’t meet the criteria,” so maybe, just maybe they’ll think twice before doing it to the next kid.

Tuba Update

Aren’t we done with this yet?

Well… maybe.

I wrote my four-page letter to the principal almost two weeks ago, and haven’t heard a single word from her, nor from the band director.  I haven’t heard a thing from anyone (except from LinkedIn, which notified me that the band director had viewed my profile, the same day that the principal received the letter… a coincidence?  I think not!), and so I am beginning to believe they have stopped trying to get him to switch instruments/quit.

I still need to get him an actual tuba to practice, and I can’t believe the help you all have given me.  It’s amazing, really, and makes me realize that the internet can be a very good place.  College band directors and nonprofits have been contacted by us, as well as on our behalf, and one of my readers here referred to tuba players as a “brotherhood,” and he said they take care of their own.  This brought me to tears (good ones!) because that is something I hoped for when The Boy began school band.  I saw it as a place he could belong, and meet neurotypical kids who were a little more likely to be accepting of him.

It also reminded me of when I was in the college marching band, in the piccolo section, and we traveled to Las Vegas for a bowl game.  The stadium continued to sell beer past halftime, and by the end of the game, the opposing team’s fans were incoherent, and several young men were actually threatening us, the piccolo section of the band!  The tuba section, all big, beefy boys left their seats to stand in the aisle between us and our bullies with their arms crossed.  It was a very brave and gallant gesture.

You helpers and supporters are lifting this boy up, in the face of someone who wants him out.

I feel very thankful.  We should have a tuba in the next week or two, and then I will ask to visit class to videotape so we can work on some modeling for The Boy, and help him to participate, which should have been the focus of all of our discussions from the beginning.  Keep sending us your positive thoughts, as now The Boy will need to get caught up!

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Meet The Boy

In light of recent comments, I thought it might be time to do a post that re-introduces The Boy and his issues to this audience.  The Boy was diagnosed with classic autism at the age of five.  Although he has a fairly high IQ, and is a generally bright boy, he was not diagnosed with Asperger’s because he did have developmental delays, and was in speech and occupational therapy starting at the age of two.  He has since “graduated” from OT, and now has speech therapy in the form of working on pragmatic social skills once a week with the speech therapist at school.

In his new school, the pilot program for which we switched schools has organizational periods for the kids on the spectrum at the beginning and end of the day.  They meet with the autism teacher and aides who help them get organized for the day in the morning, and help them get organized before they head home.  He also has a social skills class with his autism teacher.  Ideally, he would be interacting with other 6th graders on the spectrum, but he is the only 6th grader in the program, currently, so they spend some time on social skills, and some time on homework and organizational skills during this period.  He is also allowed to eat his lunch in his autism teacher’s room.  This is his safe haven.

The Boy has issues with executive functioning, verbalizing his needs (as well as verbalizing anything having to do with school, like assignments and tests), and gets overwhelmed by his senses at times.  He has issues with processing speed, and can get overwhelmed with assignments that require a lot of writing.  He has the requisite deficits in social and organizational skills, as well.

Per his IEP, he is to receive extended time on assignments and tests, sensory breaks as needed, modified assignments and tests, use of graphic organizers, testing in small groups in a separate setting, use of a word processor, and use of visual work systems (visual cards that will cue him as to what to do next, and when the next break is) in all classes.

His teachers do not send home much homework, which helps us, because like most kids with autism, he has a very great antipathy for it.  Logically, schoolwork should be done at school, rather than at home, and it just doesn’t make sense to him to have to do work at home.  When we do have homework, we break it into chunks that we can do from 15-30 minutes at a time, and then we take a break, sometimes with an incentive (m&ms work wonders), before we get back to work again.

Most of the teachers at his new school get it.  They are willing to teach him according to how he learns.  They are patient and understanding, and willing to listen to suggestions.  We are very lucky, and I am so glad I was able to work so hard to get him placed in this school.  It has meant a world of difference to The Boy.  He is happier, I think, because he is more understood.

I communicate with his teachers as needed, and never too much.  I do not get in their faces when there is an issue.  I offer suggestions when they are asked for.  I work with my son on his schoolwork and practicing whenever he has it.

My son has special needs.  My son has rights.  My son has patient and understanding teachers (mostly).  My son has me.

Winter at the Beach

Band Woes Again

tuba practiceThings are going very well at The Boy’s school.  Last week we got a note home that he had placed 2nd in his class in a pyramid game (whatever that was), and had earned a 100% on a social studies test.  I reflected that even though he doesn’t have hours of homework a night like he did at his previous school, he still seems to be learning the material – they must be doing things right.

I also got a note from The Boy’s band teacher wondering why he hadn’t been able to play his test for his teacher.  I hadn’t known there was a test, and hadn’t even known they had moved on from some small ensemble material they had been playing before and after break.  At the time, I explained to his teacher that I was very ill, but could The Boy play it next week, so I could have some time to work on it with him.

And then the poop hit the fan.

We practiced it once on Sunday, the first day I really felt human again.  And we took Monday night off (we generally practice every other night or so).  Yesterday, I start to get some emails from the band teacher which seemed to suggest The Boy is incapable of playing the test.  He got upset with me when I told him we had only practiced the test once.  He suggested maybe The Boy should play trumpet, because he’s had other kids with autism have some luck with that instrument…

Here we go again.

I’m disheartened that teachers doing what I used to do seem incapable of thinking outside the box to include students with special needs.  They seem not to have a clue that IEPs apply to them, as well.  And to have a parent like me as a resource in educating their student, and to almost disregard it…

I’m the one who’s at a loss.

Guest Post: Squirt Guns and Opportunity

Kelsey, who wrote the piece below was first my student when she was in middle school, and then again briefly in high school.  I have watched her with her brothers and sisters, and have read some of the things she has posted on her facebook page, and have really kind of watched her grow up into this amazing, funny, incredibly caring individual.  Plus she cracks me up.  And she’s a really good writer, too.  Usually bloggers ask other bloggers to guest post to gain some new readers.  I asked Kelsey to guest post because I wanted to share her writing with you.  Enjoy. ;)

When Anna (wow, strange to call my middle school teacher by her first name) asked me to write a little something as a guest on her blog, I thought I didn’t know what to write about. …And then half a second passed by and I knew what I wanted to write about.

All she said was that she knew I had an interest in kids with special needs (I had previously used her as a reference when applying to a camp for children and adults with special needs) and that I could write whatever I wanted… so I did. Here is whatever I wanted:

About a year ago, I began working as a counselor at a summer camp that also provides weekend respites throughout non-summer months. All of the campers who attend these programs have special needs of some sort and their ages can range from 6 to anyone older than 6 who enjoys going to camp. When I explain my job to people, I usually just tell them that I get to play all day with my friends (and then at night, I specialize in getting them to brush their teeth when they don’t want to).

The first thing I thought about writing for this post was a story about this time when I was trying to engage a camper I was pretty familiar with. (We will just call her camper A.) She was pretty young and had come to most respite weekends that I had worked over the past few months, yet the things I learned about her likes and dislikes were limited to the fact that she liked to go for walks and that she quickly grew bored without one-on-one attention.

She wasn’t quite non-verbal, but she didn’t say much, and whenever I asked her a question, her answer was generally just “yeah.” Of course, her “no” was very defined when she was opposed to something, too, so I knew she had to have had some level of comprehension when I spoke to her… I just didn’t know where to place that level.

One day, while I was putting together the beginnings of a puzzle with another camper, I noticed camper A becoming agitated (most likely out of boredom) and beginning to upset other campers as a result. So I brought her over to the puzzle table to join those of us working, fully expecting her to sit and watch. To my surprise, though, she jumped right in and quickly assembled half of the puzzle on her own.

The thing is, you can’t “place that level” anywhere. Those of us who spend time with children (and adults, for that matter) with special needs KNOW that they are capable of more than the world sometimes tells them. Sometimes people who “just don’t get it” can be excruciatingly cruel in excluding them from opportunities because it is assumed that they simply can’t accomplish what “everyone else” can. That’s just hogwash considering everyone has their strengths and weaknesses to begin with, no matter which medical diagnosis you have tacked onto your nametag. But quite honestly, even those of us who know this best can be guilty of the same fault. After seeing what this camper could do, even with a simple puzzle, I realized that I was limiting her in other areas.

Therefore, when we sat down at the waterfront later on and I noticed her happily failing at firing a push-and-pull squirt gun, I didn’t let her continue on like I might have previously. I showed her again and again how to work it properly, part of me wondering if my attempts were futile… and low and behold, they were not. After enough demonstration and reminder, she learned how to properly work the toy and her squeals of delight grew and grew as she did it successfully again and again. It wasn’t that she shouldn’t be allowed to use the toy incorrectly… it was that not trying to teach her because I thought she wouldn’t understand was depriving her of an opportunity. (Of course, I eventually realized the monster I created when she began to soak my previously dry clothing… but that’s not the point.)

Through this job, I have met several young people who know they have what it takes to be successful- they just need some assistance. A lot of them also understand that many people in the world are not willing to give them the time and energy they deserve in order for them to reach their potential. Or rather, they know that this is a pattern… I can’t say that any of them understand it. And neither do I. It has been said time and time again that people who have disabilities can and want to do just as much as anyone else… and this is so, so true. But it’s not enough to parade that idea around on a button pinned to your t-shirt. It has to be actively practiced and enforced, even if you think you’re already doing all you could possibly need to do.

Even after this realization, I still find myself accidentally limiting campers in ways that seem so tiny and insignificant that it couldn’t possibly make a difference. (i.e. buttoning their coats or tying their shoes for them, simply because it’s faster if I do it.) However, I also know that rationalization to be a simple matter of trying to make myself feel better for these slip-ups. The reality of the situation is that even small limitations pile up quickly. It doesn’t matter if someone has been denied the education route they really could benefit from, or simply the chance to put together their own macaroni necklace. So many kids with special needs are told they can’t can’t can’t… and, most commonly, without being told anything at all.

Obviously, the solution to all of this would be for everyone to be perfect, so that helpers always knew how best to provide their help, be they parents, friends, caregivers, teachers, etc. In that case, though, those who needed help would also be perfect, therefore not requiring help in the first place. Maybe perfection isn’t what’s necessary here, though. Maybe a little reminder every now and then, on the other hand, is.

Summer Camp

Last Day: Looking Back

I think it’s only normal for people to look back before starting something new, and New Year’s Eve is a logical opportunity to do so.  It’s also important.  One of the things teachers benefit most from but rarely have time to do is reflect on their daily teaching to analyze what worked and what needs to be tweaked.  True in non-teacher lives, as well, I know.  At the end of the day, thinking back on what was positive, and what we could have handled better helps us learn from our mistakes, and decreases the likelihood that we will repeat them.

This year, I moved house in a major way, got married, left my career, battled for better schooling for my son, wrote a novel, and got a new job which I love.  I’ve left old friends behind (but never forgotten), and made new friends.  My life has improved, sometimes by sheer will.  I compromise more (a new husband and a blended family make this absolutely necessary), I don’t get nearly as many headaches, I relax (fully) more.

At the beginning of this year, I couldn’t see past June.  It was a complete unknown – What would I be doing?  What would my son be doing?  How would our lives change?  Now that I am six months past that point of all that was unknown, I am proud of us for taking this leap, trusting ourselves to get re-married, trusting that we could find a good school situation for The Boy, and trusting that I would land on my feet with a job I didn’t hate, making enough to pay the bills.  I am very proud of us.  It was a big leap of faith, and it has turned out beautifully.

2013 has been a year of great change, of great opportunity, of great hope, and of great reward for me (and us).  I hope it treated you just as well.  I look forward to 2014 with great anticipation for continued growth for all of us.

Happy Old Year, Friends.  And Happy New Year.

English: This came from New Years Eve 2004 int...

Sad to Lose My Bright Spot

My little kindergartener’s mom called today to say she won’t be coming back to me for tutoring.  She’s not verbal in the same way The Boy is not verbal, and her mom said she didn’t really know me, and you couldn’t be too careful, when she can’t tell her parents about anything that happens to her.

I get it.  Believe me, I do.

But I can’t deny that it hurts, and it makes me sad.

Once, when I was still doing my teacher thing, I was accused by a parent of putting my students in danger of heatstroke by having them march in a parade in 80 degree weather.  I’ve been called a lot of things over the span of my career, but that one really, really hurt.  That someone would think that I would ever harm one of my students was so wrong, such an unwarranted injustice to me…  Needless to say, it stayed with me.

As does this.  I looked forward to working with her, because I saw so much of my son in her, and she was a joy, a JOY, to work with.  I wish her well, and hope she gets every support she needs to become as independent as she can possibly be.  I hope she is able to advocate for herself someday.

Teaching can break your heart sometimes.

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