Category Archives: Schools and IEPS

7 Things You Might Not Know to Ask for When Transitioning Your Autistic Child to Middle School

“Middle school” is a scary phrase for most parents. Thoughts of your baby wandering around a big school, trying to find his classes and being run over by much bigger 8th graders are frightening. He will no longer be cocooned in the safety of his elementary classroom with a teacher who knows him well, and there is the expectation your child will be able to function more independently. But what if your child is on the autism spectrum? What if he has difficulty advocating for his needs? What if he is difficult to understand? Or becomes overwhelmed? How do you rest easy knowing that his differences may make him an easier target for bullies?

I am a middle school teacher/media specialist and an autism parent. In my 15 years of teaching middle school, I have encountered many children on the autism spectrum. Some struggle and, yes, some do quite well. I have learned small things can make all the difference for our special kids. Unfortunately, many parents don’t know they can ask for special assistance. Without the proper plans in place to begin with, it can take months or years for solutions to occur to teachers or administrators.

Every child is different — autism or not. The following ideas are things I have seen to be most helpful for spectrum kids surviving middle school:

1. A 5-minute early pass. If your child is overwhelmed by loud noises or people bumping into him, passing time in a middle school hallway can be upsetting. Ask for a laminated hall pass to leave each class five minutes early. Your child will then be able to use the restroom and make it to his next class in peace. A pass may also curtail bullying, which often occurs in the bathroom or hallways. Deans and guidance counselors utilize such passes for students for various reasons and it won’t hurt to have one. If you find your child doesn’t have a problem in the hallways, he can simply choose to not use it.  (This post is continued on WhattoExpect.com.)

Poof!: Losing an Autism Diagnosis

Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  😉  

 

School Essay Planning Guide

This has nothing to do with autism.  But I’m a teacher/media specialist, and I know that many of you have children and grandchildren out there who might benefit from this.   I created this today (along with our language arts team and a FDOE writing consultant) to help our struggling writers understand the writing prompt and keep their focus.  Kids often don’t understand what effective writers ask themselves during the writing process.  We will be using this to help them analyze a variety of writing prompts and essays as well as to write/evaluate their own essays.  This can be used with both middle schoolers as well as high school students.  If you are a teacher, feel free to copy and use to your heart’s content.  :)

Essay Planning Guide

Morning Has Broken: We Have Words

 “There’s something happening here.  What it is ain’t exactly clear…”

-Buffalo Springfield

Progress is deceptive.  When you keep your eyes on the road ahead, the journey seems oh-so-long.  Long enough that you perpetually wonder if you’ll ever reach your intended destination.  It’s only when you stop going and going and stop to look back that you realize the distance you have already traveled.  And, sometimes, that realization is all you need to get a second wind.  To find what seems impossible may be in the cards for you after all. 

Callum started Pre-K ESE in the spring, right after he turned three.  Placing him in that room on the very first day was the scariest thing I’ve ever had to do.  Other parents, teachers, and therapists kept telling me that I would be amazed at what the structure of the classroom would do for him in terms of language and social development.  I don’t think I really believed them.  Not because I don’t have hope for my child.  I do.  It’s just that hope can sometimes be a dangerous thing.  It can let you down.  With a severely developmentally delayed child, you have to walk the nearly invisible line between acceptance for what might be and hope for what could be.  When you do one, you risk denying your child the other — in an endless cycle of “I need to do better”. 

But since returning to school this fall – to the same teacher’s class – we cannot deny that Callum has made progress.  On all fronts. 

A few weeks ago, we began receiving reports of words from school and daycare.  And not just randomly repeated words out of context.  But words Callum knows and made the choice to use.  “Peesa” (pizza), “mi” (milk), “pees” (please), “I sowwy” (I’m sorry), “tantu” (thank you), “goo ja” (good job), “nana” (banana), “come ah” (come on), and more.  It seemed to happen all at once. 

But it hasn’t been just words.  There’s been a kind of strange give and take in our verbal interactions with him — even when he’s just babbling.  His babbling sounds like sentences in a foreign language.  And they have a distinct tone — silly, happy, etc.  The amusing one is when he is displeased.  You can tell you’re in big trouble with that one as he furrows his eyebrows, raises his voice, and emphatically babbles his displeasure.  That one inevitably follows being told that he may not have more chocolate or jump on the couch.  Or both.  The important thing is that he is clearly responding to what we say.  He responds when asked a question and usually when told to do something.  And it’s often like a conversation.  It’s different from before – in some way I can’t exactly qualify.  But everyone sees it.

And then there are the social differences.  His teacher, whom we think the world of, reports that he is understanding and following classroom routines.  He sits in circle time, follows the yellow line when walking, and holds is backpack.  No, he isn’t mastering any academic goals yet.  But social conformity precedes learning.  It’s a foundation on which we can build.

He’s also getting into things more now and starting to get in trouble.  It gets harder each day to look dutifully stern when he gets a naughty twinkle in his eye before attempting yet again to break the rules.  He knows he’s being bad – and he is delighting in that knowledge.

And when he isn’t looking, so are we.

If I had to boil it down to one description, it would be this:  Callum — the boy — is in the room with us more and more, not just his body.  He isn’t playing quite yet, but he has shown more interest in some toys.  He is requesting things other than food (such as bringing us his shoes when he wants to go for a drive).  He is swaying to music on occasion.  And discovering that he can open things and make a mess.

Callum, in short, is emerging from behind the wall of autism. Yes, I know the wall will always be there.  I know it is a part of him.  He will always be different, and he will always slip behind that wall sometimes.  But he is learning that things on our side are kind of cool too.  He is seeking us out and realizing that we will consistently meet his needs — especially if he makes them known to us.

And with this comes a level of wonder you can’t begin to know unless you have a child whose developmental milestones aren’t guaranteed.  Each one met is precious and must be celebrated without the assumption of the next to come.  Living in the moment takes on new meaning when patience becomes a choice over a virtue.

No, nothing this little boy does is taken for granted.  Every word, every interaction, every anything he didn’t do before becomes a blessing.  And that, in itself, is a blessing I could have never anticipated just a few short years ago.

Yes, we have words.  But with that, we have so much more.  We have hope.  And a song in our hearts — whose tune we have sometimes forgotten.

Morning has broken, like the first morning
Blackbird has spoken, like the first bird
Praise for the singing, praise for the morning
Praise for the springing fresh from the Word

Eleanor Farjeon

I Talked to a Bunch of Third Graders…and I Liked It

If you are a regular reader, then you already know I don’t often invite guest bloggers to post here.  But my friend Lizbeth who blogs over at Four Sea Stars wrote an awesome post today about a subject close to my heart — parents speaking fearlessly about autism directly to those who are in their child’s life.  I believe in this approach and have often lamented this wasn’t done for students I’ve known in the past.  Lizbeth’s approach to speaking with these kids was genius.  And she succeeded in positively impacting the relationships between her son and his peers.  She also made me cry. 

If you are thinking about taking this approach to helping your child’s peers and teachers better understand him/her, you need to read this post.  It will warm your heart. 

-Leigh

I went into school the other day to talk to Alex’s class about Autism.  Nothing instills fear in me as much as talking to a small hoard of third graders.  Kids—they are unpredictable, they are young and for the most part, they say what’s on their mind.

They scare me.

Earlier in the year we had an incident where Alex was bullied and that spurred the question of, “What do the kids know about Autism?  Do they know anything?  Do they even know he has it?”  The answers came back as no, no and no.  The kids knew nothing.

I though that maybe if they knew something, heck anything, there may be some compassion.  They may have some understanding of why he does what he does and maybe with understanding would come some form of acceptance.    

I’ll be the first to tell you, I worked with our school to do this.  Our teachers are great and in some ways I am really blessed.  They get it.  They get Alex.  They get me and they are willing to work with the things I suggest.

I had a PowerPoint presentation and from that presentation, I made a book for each child in Alex’s class.  I wanted each one of them to have something to bring home so their parents could see what we went over in class.  Truth be told, I did it in the hopes that the parents would know what I talked about, and maybe just maybe, there would be further discussion at home.

Anyway, it turned out to be really interesting.  And enlightening.  For all of us.  The kids were really interested.  The teacher had told the students on Monday I would be coming in, later in the week, and asked if they had any questions about Autism.  None of the kids knew a stitch.  They wanted to know things like:

  • Can I catch it?
  • How do you get it?
  • What is it and where does it come from?
So when I went in last week, we had the presentation on the White Board.  They use this all the time in class and it’s basically a computer screen on a white board (imagine that) on the wall.  The kids all sat around in a circle eating their snacks and before I could even start a boy asked, “What is it?”
 

Disorder in the Court: Why I Don’t Champion Causes

Note: This blog post is not intended to question the veracity of any specific stories of injustice toward specific autistic individuals.  Nor am I disparaging any bloggers for the causes they choose to champion.  This is simply an issue in general that I have been concerned about for some time.

A man goes to his spiritual advisor to confess his sin of spreading false rumors.  He feels terrible about it and wants to know what he can do to stop feeling so guilty.  He is told to gather a huge bag of feathers and to place one feather on the doorstop of each person with whom he shared the false rumor and to return a week later for further guidance.  The relieved man races out to do so and returns in a week.  He happily reports that he did as asked and inquires what more he must do to make amends.  He is then told to go back to each house and pick up the feather.  Alarmed, he protests that it will impossible to get them all back.  The spiritual advisor sadly agrees.  

From time to time, I get requests from well-meaning souls to share provocative stories with my readers, either here, on Facebook, or Twitter.  I received two yesterday.  I was asked to share a story about a person with autism who had been unfairly treated –along with a petition to demand “justice” for that individual.  The story, as presented, did indeed sound awful.  The parents were reported to be outraged and desperate.  And there are lots of demands being made for a specific course of action toward those allegedly responsible.

But I’m not going to share the story.

It’s not because I don’t care.  It’s not because I can’t imagine myself in their shoes.  Of course, I think that the needs of the defenseless must be the first consideration when accusations are made.  And it isn’t that I think the stories are false necessarily.  But I think that we, in our community, tend to react with outrage before we sort out the facts.  The problem is that, every now and then, it might just destroy the life of a truly innocent person.

I doubt I’m the first person to declare such, but it needs be said.

There are lots of crazy, unreasonable, and simply mistaken people out there.

Statistically, some of them are going to have special needs children.  And an even smaller percentage of those are going to have a some sort of platform.  That platform, in all likelihood, will also host perfectly sane, logical, and correct people who also have special needs children.  All we have to do is determine which of these complete strangers is telling the truth.

Pause here for a moment of silent reflection.

The problem is we have no easy test for sanity, reason, and accuracy.  There is no database in which to check he said/she said.  We cannot know them all personally.  I happen to think myself a very good judge of character.  I think I’m open-minded, and I attempt to remain civilized.  But I am not so confident in my people skills or psychic ability to champion the cause of a viral internet story without having been present in the room in which it supposedly happened.  I won’t risk ruining the lives of the innocent people who are sometimes going to be wrongfully accused.  That’s not my job.  Detectives, investigative reporters – have at it.  Like the rest of you, I’m interested in the story alright.  But verifying isn’t my area of expertise. So, I’m not going to run in and tweet, share, or blog about it until someone with complete access to all of the pertinent information reports their findings and not just what one side shares with the media and internet.

I have taken an informal poll.  It’s informal because it is laughably imprecise.  Statisticians, avert your eyes.  I divided up everyone I know (or attempted to) and separated them into categories: Reasonable vs. Unreasonable.  I came up with 5% of the people I know being unreasonable, based upon my own unstated criteria and subjective appraisal.  Admitting the fragility of my statistical reasoning, I still confidently maintain you could try the same and come up with a similar number.  (Note: If the number you come up with is 95% or higher, you are the unreasonable one and should seek counseling and perhaps medication.)  Go ahead, try it.   I’ll wait here.

I am a teacher.  And I’m going to say something that is going to be unpopular with 5% of the special needs parenting population.  There are some really crazy parents out there who have special needs kids.  Some of them expect teachers to have no life whatsoever.  Some of them have mental problems.  Some of them are just plain mean.  Some of their children actually lie.  And, every now and then, one of them decides to get your goose.  There isn’t a veteran teacher alive who hasn’t had one come after them.  But usually, those issues involve grades, complaints about teaching style, etc.  The world doesn’t pay any attention, and the matter is resolved to varying degrees of satisfaction.  But special needs individuals?  What else can bring about such strong feelings of rage and empathy in public opinion?  Yep — God help the special education teacher falsely accused of abuse or the doctor accused of malpractice.  Ditto for therapists, social workers, hospitals, police, medical personnel, bus drivers, and anyone charged with the care of this population.

In my 15 years of teaching, I have both seen and experienced false accusations by parents.  Sometimes, it isn’t an outright lie but a simple omission of fact that skews how outsiders view the situation.  I have also listened to friends in the medical profession express frustration with similar incidents.  And, here’s the thing.  All of those people I mentioned who work with children?  They can’t defend themselves to you.  By law, they are not allowed to speak to the media, clarify the facts, or share additional information.  They can’t tell you about the accuser’s history.  They are required to stand still while the crowd throws things at them.

It is one thing to demand an investigation.  I’m all for that.  But that’s not what we usually do.  We tend to insist upon a judgment that concurs with our own and demand action –a firing, a medical treatment/procedure be completed, or prison time.  This court of public opinion known as the internet –most especially for those of us in special interest groups – is a dangerous one in which to be a defendant.  Since, I’m no prosecutor, I won’t be pressing any charges.  Yes, I believe that we need to champion the cause of helping our own children and future persons with autism to have greater access to their world.  Yes, sometimes we need to be outraged.

But I also think that we need to be more discerning in our social media and analysis of the “news”.  Just because someone created a Facebook fan page doesn’t make the story true.  We need to remember that all are not who/what they appear to be.  And just because we can’t stand the thought of such a thing actually happening to our own precious children, it doesn’t mean that it really did happen to someone else’s.

No, I think these words are wise indeed: “Trust, but verify.”

And if verification isn’t possible, don’t state them as fact, but direct the matter to those who can.

It’s a Golden Rule kind of thing.

Lipstick Kisses: In Praise of ESE Instructional Assistants

Today was my three-year old’s last day of Pre-K ESE summer school.  (In our school system, it is but three short weeks.)  When we went to pick him up, several of the ladies at the county’s exceptional education school (where the program is housed each summer) came out to tell us how much they loved having him, how sweet he was, and how much they would miss him.  When my husband remarked that Callum’s little cheeks had lipstick marks on them, one went on about how “kissable” he is.  Then the instructional assistant who normally works with Callum during the school year at his home school started laughing and bantering with the ladies from this school about how they needed to back off and they that couldn’t have “her baby”.   Oh yeah.  It warmed this mama’s heart alright.

And it got me to thinking about the role instructional assistants (or if you prefer – teacher’s aides) play in the lives of our special children.  As a teacher, I already knew much we need them in our schools and how they manage to keep things running smoothly.  Yet, they are paid next to nothing.  I’ve known instructional assistants who, after the cost of insurance premiums for their family, receive paychecks of maybe thirty dollars bi-weekly.

But these individuals are an important part of our children’s schools and lives.  This is not to underplay the importance of their regular and exceptional education teachers.  But those teachers are insanely busy crossing T’s and dotting I’s these days.  They struggle to teach the state curriculum while having to plan for a wide variety of accommodations and teaching methods to best reach their students.  Too often, they don’t have the time they would like to have to meet the individual needs of our children during the course of a typical school day.  Not with all the paperwork, meetings, and other silliness imposed upon them by The Powers That Be.

That’s where the instructional aide comes in.  In the elementary school, they are often the ones rocking an overwhelmed child in a corner, feeding those children not yet able to do so, and giving out extra love and hugs.  At the secondary level, they are the ones who jump in to defend a misunderstood child from other students and even faculty.  They are the ones sitting outside at a bench with a child who has just been given a time out, listening and reasoning with them.  They get to know the children individually in ways the overworked and multi-tasked teachers are unable.  Good instructional assistants see themselves as teachers as well and are invaluable.  Yet they aren’t often included in Teacher Appreciation Week.

So today I’d like to say a big thank you to Callum’s instructional assistants and all the dedicated  exceptional education assistants of the world.  Thank you for loving our babies.  Thank you for caring that our children require their crackers and bread to be of a uniform shape.  Thank you for seeing in them the beautiful, loving, and valuable souls we know them to be.  Thank you for making it a little easier to place a defenseless child into the hands of another.  And for lipstick marks.  Especially for those.

You brighten their days and lighten ours.  You are a remarkable blessing indeed.

A Very Fine Pickle Indeed – Telling Tales Out of School

Hindsight is a funny thing.  The clarity that comes with it is elusive when you need it, but it never fails to show up and smirk when you don’t.

Last year, a Facebook acquaintance ambushed me at a retirement party and suggested that I pursue real writing rather than concentrating my creative energies on Facebook statuses.  Appealing to my vanity, he told me I had a “distinctive voice”.  Yeah…you know I just ate that up.  But after years of uninspired resume, application letter, and obituary writing for friends and family, it occurred to me that I needed an outlet.   I had tried blogging before, but it lacked a focus and I soon abandoned it.

In the spirit of “writing what you know”, I went and looked up autism parenting blogs.  I found Babble’s top autism blogs, checked out a few, and found that I suddenly had a lot to say.  And realized with chagrin that I had been saying it, but to people who weren’t particularly invested (friends and family not directly affected by autism).  I had been blabbering away about my experience without a willing audience and needed to give my poor friends a break.  After reading a few blogging tips, brainstorming a name, and creating Twitter and Facebook accounts to find some readers, I created an account on WordPress, wrote my first post, and timidly entered the autism blogosphere.  My goal was simple.  I wanted to build up a readership of about 75-100 people (similar to a friend of mine’s beer blog) and meet real people who have been in my shoes and were willing to talk autism.

Imagine my surprise – and I confess my delight – when, after four days of blogging, my “Apology” post took off.  Not like those hilarious treadmill blooper videos, mind you – they’re totally awesome.   But 56,000 hits in a single day.  Which, for a four-day old niche blog, is pretty viral.  A couple of weeks after that, “Dear Shopper” took off as well.  And, in almost surreal timing, the following day “11 Things” was “Freshly Pressed” on the WordPress.com homepage.

Suffice it to say, it was a most extraordinary experience for a newbie blogger.  Suddenly I had hundreds of comments and emails—encouraging me, sharing their own stories, wanting me to guest post, asking my opinion, or offering me an “opportunity” to sell their product.   Yep, my Warhol-allocated 15 minutes was something else.  Now that they’re over, I am relieved.  Statistically, it is unlikely I’ll get any more.  And mine were a good 15 minutes – unlike those unfortunate souls whose minutes came while dangling on a ski lift with their pants down.  One really must practice gratitude when one can.

Had that hindsight been present, I would have spent more time thinking about the implications of blogging than social networking or a name for my blog.  And I would have changed my name – not merely going by my maiden name, but changing it altogether.

You see, I’m in a very fine pickle indeed – of my own making – and there’s really nothing that can be done about it.    Well, I could dramatically post a notice from a relative that I had been hit on the head by an asteroid, but that would make me unhappy.  I happen to like blogging.  I love interacting with this community of parents – who understand the value of support so much as to offer it to strangers they will likely never lay eyes upon.  Every parent would walk through fire for their children.  But you guys-along with every parent of every child who has been vulnerable in an unforgiving world – have actually all gotten the call to suit up. We come from all walks of life, but we share this one thing in common.  Nope, I’m not giving it up.

But going by my own identity was probably a less than stellar idea.  Some might think I’m saying that due to the sinister nature of the internet.   They’d be wrong.  Because it isn’t that I don’t want any of you to have my name, it’s that I wish everyone I knew in real life didn’t!  In a large enough city, it wouldn’t be a problem.

But I live in a small one.  We have one high school.  I personally know all of our local candidates for superintendent. Almost all of our school level administrators were born and raised in this county.  And, having been employed here for 15 years, I have taught with, trained with, worked for, or attended high school with most of them.  You don’t have to play six degrees in this town.  Usually two will suffice.

My point is this:  the day will come when we have a concern or complaint.  It just will.  (And I am one of the least rock the boat natured women you’ll ever meet.)

And I will have to think about whether or not this teacher or that therapist or which administrator is related to somebody else and whether it might be a problem. We have awesome people in my school system, and I do have faith that most of my colleagues want the best for every child.  But if you work for the same people you might one day have to petition, you’d be a fool to be unaware.

All this would be bad enough for any special needs parent, but then I had to go and start blogging – using my real name.  It wasn’t that it was a secret really.  My friends and family knew. I just wasn’t making an effort to promote it to whole city.   But someone saw “Apology” on the Autism Speaks site and it got out.  Now some folks are interested and asking me about it.  Which is certainly no big deal.  But at some point, someone who works with him will see it as well.  And, considering how careful and sensitive teachers of special needs kids already have to be, imagine how thrilled they would be to hear the mom in the IEP is an autism blogger.  Add to that the abundance of lawyers in my family, and I’ll be surprised if meetings with me aren’t recorded and legally represented!

In short, there are many opportunities here to royally infuriate someone with the power to make my life miserable.  And, yes, I know the First Amendment (barring stupidity or slander) will protect me.  But that isn’t really the point, is it?  I have to live and work in this town.  I happen to like most of these people.   I need my job.  But, most importantly, I don’t want anyone resenting or avoiding my child because they fear I might go and raise a stink on my blog.  I’m not going to do that to anyone who works with my child period.  But I wouldn’t blame them for being a little leery about it.

If I had blogged about, say, stamp collecting, it would have been alright.   If that one post hadn’t taken off, it would have been okay.  But the internet is an unpredictable thing.  And I have recently learned it is a very small world after all.

So here I am, blogging away while attempting to analyze every possible consequence of each post.  Who might read this?  How might they interpret it?  Does it suggest anyone’s identity?  Will a family member or friend be inadvertently offended or affected?  Might the school system see this as criticism?  And – if I attempt to minimize negative ramifications – am I remaining true to me?  Censoring myself is hardly therapeutic.

So, yes, I’m going to continue what I’m doing.  (Mainly because I’m lazy and all other autism advocacy seems to involve running several miles in unflattering clothing.)  I’m still going to talk about what I need to talk about or say what I think needs to be said.  I’m simply going to continue to look very carefully at how I say it.

No, I didn’t think about any of this beforehand, and I should have.  So those of you who are thinking about writing your own blog, be forewarned.  You really have only three options when blogging: use a nom de plume, write pure fluff that will offend no one, or grow thicker skin.  The first two options won’t work for me.  So I’m working on that third one.  While repeatedly looking over my shoulder.  And maintaining possibly the largest unpublished drafts folder in the history of blogging.

Sometimes I am not so smart.  :/

“I always feel like somebody’s watchin me and I got no privacy. Oh oh oh…”  

-Rockwell

Letter to My Special Needs Child’s First Teacher

Two years ago, my husband and I took our daughter school supply shopping for the first time.  Armed with list in hand, we searched for the requisite items, allowing her to pick out the colors and designs.  We were nervous about her first day.  I was emotional, wavering between excitement and pride and fear of putting my precious little girl into someone else’s hands.   We talked it up to her and made a big deal out it, allowing her to choose a special first day outfit and hair clips.  Then we walked her in to her classroom, helped her find her cubby and seat, kissed her goodbye, and left.  I teared up as I left, like many mothers – but knew in my heart all would be well.  And at the end of her day, we delighted in hearing from her about each and every new experience.

Last night, we made preparations again for her little brother’s first day of school.  We went to the store to buy school supplies.  Only, this time, we picked them out ourselves. My son, mostly nonverbal and autistic, doesn’t have an opinion about his lunchbox.  He doesn’t know his colors yet, nor does he express a preference.  He doesn’t even understand that he is going to school today.  This experience of The First Day of School is altogether different for us.  And at the end of his first day, he will not be able to tell us what he thought or how he felt.

In a couple of hours, we will-supplies in hand- walk him into a very big building.  In it will be hundreds of children who can follow directions, feed themselves with a spoon, are potty trained, and can – if frightened or in pain – express their needs.  My son cannot.  Yet I will be placing his tiny, just shy of three-year-old hand into someone else’s – someone who does not yet know and love him.  Someone who will not be able to understand the few words he has and the peculiar ways he attempts to communicate.  Someone who will not know how to soothe him when he inevitably gets lost in confusion and frustration.  I cannot begin to convey the bone deep terror I am feeling right now.  He is so little and helpless.  And it is such a very big bad world out there.

I met you last week at his IEP.  I tried to use every instinct I had as a teacher to get a feel for you.  My instincts tell me I made the right choice.  You weren’t assigned to him by chance.  Teachers know all about homework, and I did mine.  Yes, I shamelessly queried every connection I have made in my years in the school system to find just the right classroom for him.  You are rumored to be the best.  I can tell you that some mighty fine people whom I like and respect think very well of you.

Having done that, I now have to step back and let you do your job.  I have to trust in your experience and love for special little ones like mine.  Let me assure you that, though I feel confident in my choice of you as a teacher, this is the hardest thing I’ve ever had to do.  For, somewhere in your classroom – is a cubby with the name of the little boy who encompasses my entire world.

And though I am trying, there really are no words.

As a teacher, I know what you need from me.  I have been where you are.  And I want you to know I plan to support you.   I will take into consideration that you are a person – not a saint.  I know all too well how bone tired  you can be at the end of the day.  How hard child neglect and apathy can be to your mind and heart.  How critical the Powers That Be in Education really are.  I know how all of your planning time is stolen for stupid meetings and unhelpful consultants.  I know.  I do.

So, here is my pledge to you.  I am not going to make your life a living hell over the little things.  You are allowed to be sick, sometimes have to come up with things on the fly, have your head turned during a minor bump on the head, and even forget a note home or phone call.  You aren’t superhuman.  I pledge to not expect perfection from you.

In return for this, I would like something from you.  I would like you to remember that this little boy is mine.  I would like you to remember- when he is being difficult – that he cannot speak for himself, cannot share his fears, desire for mommy and daddy, and confusion over the new expectations placed upon him.  I would like you to remember how fragile and defenseless he is while learning how to navigate this world.  I would like for you to grow to love him for the sweet, loving little boy who cuddles with me and holds my hand each night.  I know that, having chosen to do what you do, you already know these things and have already made that committment.  But, please -on the most difficult days that all teachers have – remember you are holding my world in your hands.

Thank you for your sacrifice.  For, though we both know the rewards of teaching are many, I know the time, dedication, and expense you put into it –for little pay and a great deal of hassle.  May you be blessed with patience, love, determination, optimism, realism, and the stamina that I know is required to do what you do well.  If you need anything at all, please pick up the phone and call.  For I know for certain that, in this sacred trust, I am calling on you already.

If you liked this post, you might also enjoy:

Letter to My Neurotypical Child

Letter to My Autistic Child

Apology from Your Child’s Former Teacher

From the Rooftop: Autism Disclosure

Last year, when I made the realization that my then-20 month old son was showing clear signs of being on the autism spectrum, I shared my concerns with a few people.  Those people had one of only two reactions.  The first was denial.  I was told that my son was too young, too cute, too social, and the oft-repeated “But he’s a boy.  They develop later than girls.”   I understand this reaction.  Parents often worry for nothing — especially about early development.  Boys are different from girls in their development.  And, yes, my son’s spectrum behaviors are somewhat atypical.  (As for being too cute?  Well, I don’t deny for a moment that he is The Cutest Little Boy in the World, so there is that.)

It was the other reaction that left me somewhat disconcerted and admittedly…torn.  I was immediately told by several people to keep quiet about it.  I’m not suggesting that they didn’t want us to seek help for him.  They did.  But they also insisted that we should protect him from any stigmatization by keeping it a secret.  Not wanting to make any irreversible mistakes, initially we followed that advice.  Only close friends and family were told, along with my administrators, who would inevitably notice all of the days I had to be out for assessments, appointments, hearing tests, etc.

But as the months passed, I found this advice difficult to follow.  We live in a small city.  One tends to bump into acquaintances in one of only two therapy centers in the county.  Family friends know that ASD in the family.  Inevitably, one member of the family is incapable of keeping a shut mouth.  To state the obvious, it gets out.  In our case, because Callum has some indicators that he may one day be high-functioning, I found myself wanting to clarify his situation as being hopeful rather than bleak.  So, while I initially intended to protect his privacy, life happened, and now folks know.

Yet it wasn’t mere inevitability that decided the secrecy issue for me.  What decided it were my experiences as a teacher.  After years of working with ASD kids in middle school – in a range of severity and ability – I have reached the conclusion that not only should ASD not be shrouded in secrecy , it should be shouted from the proverbial rooftop.

In my sixteen years working and teaching in multiple schools across the school system, I have met a lot of ASD kids.  While they have all been verbal (nonverbal spectrum kids in this county usually attend a special-needs school), their functioning has varied from non-reader to academically gifted and from requiring a full-time aide to being completely self-sufficient.  I have also worked with kids who were clearly – to persons with any sort of knowledge of autism spectrum disorders – clearly autistic/Asperger’s, but were never diagnosed due to their families’ desire for secrecy and a refusal to have them evaluated for needed services that might “put a label” on them.

In addition to ranging in severity, function, and awareness of their condition, they have also varied in the positivity of their middle school years.  In my experience, the ASD kids on the more severe end of the spectrum fare a little better in terms of teasing and bullying.  Their behaviors are so obvious that the typical kids seem to “sense” their differentness.  The bullies among them don’t bother as much to target those kids as they don’t give as satisfactory of a response to teasing.  This is not to imply that severe ASD kids don’t suffer from bullying.  They do.  But most middle-school bullies prefer a victim who will provide a little more “entertainment” and interaction.

The ASD kids on the higher-functioning end of the spectrum, in my opinion, don’t fare as well.  Their differences and needs are perceived as weird or deliberate, and they suffer all the negative attention that follows.  Because their diagnosis is known, however, school staff try to be on the lookout for such things and often make accommodations to help them navigate around the bullies.  We try to pair them up with more sensitive students and have plans for them on special events days.

But the ASD kids who are never diagnosed or whose condition is not revealed?  They have it worst of all.  These kids, whose families- and sometimes even doctors and teachers- want them to be viewed as “normal”, have received little to no help whatsoever.  They have endured years of criticism about their poor handwriting, clumsiness, social awkwardness, etc.  They have been left alone in the world, trying to navigate a mine-field of subtle human behavior, facial expressions, and unwritten rules of social norms.  These kids could have received speech, occupational, physical, and cognitive therapy.  They could have been taught how to interpret otherwise inexplicable-to-them behaviors of the world around them.  But they get nothing.  Their middle school years are pure hell.  They don’t even know themselves why they are different.  Imagine being that intelligent and not knowing why your life is so hard.

A desire for secrecy – as well as the well-intentioned desire to “not stigmatize” them – denies these kids years of help and the understanding of others.  To me, that’s unforgivable.  Because in the ASD world, that level of high-functioning is a gift horse you just don’t look in the mouth.  

Just imagine how years of speech, occupational, and cognitive therapy could have benefitted them.  Would they still be autistic?  Of course!  But they could have been autistic with friendships and accomplishments and far fewer memories of bullying and humiliation.  I pray each day that my son learns to speak in sentences and that his joint attention improves to the point of being able to learn academically.  I pray each day for him to have the opportunities the high-functioning kids have.  I also pray that, no matter what his level of functioning, that I will find the right words and actions to help him fit into his world.

Yet all I have seen with regard to autism disclosure is…nothing.  Either the autistic child’s functioning is so low that the other kids just sort of naturally leave them alone or their functioning is so high – but so unusual as to be weird – that the other kids tease and bully them.  I have yet to see a moderate to high-functioning child who understands his own condition enough to help others understand or a parent or counselor (with parental permission, of course) come into the classroom and visit with the other students to explain it for him.

The thing is, I really do believe that could make a difference.  It is amazing how typical kids can and do often rise to the occasion when something is explained well to them.  Will bullying still exist?  Of course.  You can’t be different and not experience it at all.  But when you point out the obvious, you, to some degree, disarm those who would have done it for you.  You educate others and prepare an easier path for yourself.  At the very least, you put the world on notice of how you expect to be fairly treated and can then reasonably expect to hold them accountable.  Until then, you can’t say they really know better.

I am certain that there are those and will be those who believe that I should keep Callum’s challenges quiet.  And I know they mean well.  But I’m coming at this with the hope that his abilities will be such that he will need me to help clear that path for him in the regular classroom.  I’m hoping his functioning will be at such a high level that he will seem merely odd, rather than incapable, and need the understanding of his condition by those who might not otherwise have perceived it.

I might not get what I want.  He might never progress beyond a few words and gestural communication.  If that’s the case, we will love him and help him to be the best and happiest Callum he can be.  If that’s the case, then our revelation of his ASD status will be moot.  Everyone will know anyway.

But if it isn’t the case, then I’ll still be the eye in the sky reporter, watching for trouble, pointing out roadblocks, and suggesting other routes.  I will visit his class and help his classmates to understand.  I will insist that not only his teachers be present for initial parent conferences but also any para-professionals, administrators, office personnel, or cafeteria managers who might need to know who he is and why he does what he does.  I will continue to do those things until he can do them for himself –so that I will never see the look of grief in his eyes that I have seen in so many ASD kids’ eyes.  I might not be able to change the world.  But, by avoiding secrecy and ignorance, I can help to improve his.

And at the very least?  I intend to put them on notice.