Category Archives: Schools and IEPS

On Inclusivity Versus Tribe in Special Education: One Mother’s Thoughts

800On Friday, night, Callum attended the first birthday party he’s been invited to by a classmate. All the other kids (mostly older) attending the party were fully verbal and had established friendships. No, he didn’t fit in exactly. But the birthday boy’s family were welcoming. And every single one of those boys turned and exclaimed, “Hey, Callum!” And gave him fist bumps. He got to “play” party table games with daddy and the other kids and won a bunch of candy. He had pizza. He stood during the birthday song. He was thanked enthusiastically for his gift. He ate a giant wedge of strawberry cake. And got some more fist bumps and a genuine “Goodnight, Callum! We’re glad you came.” It was a success.

We can start a passionate debate here about inclusive education and how awful/wonderful it is that Callum now attends an exclusively special ed school. But I’ll tell you right now why parents agree to it. Because of moments like this. Moments when other children are welcoming because there’s zero pressure not to be. Moments when a 13-year-old boy can proudly open gifts of cologne, gift cards, and trendy clothes alongside equally desired gifts of toy cars and dinosaurs – with no embarrassment. Moments when no one is the odd man out because everyone in attendance understands the state of Otherness. Moments when everyone can relax, smile, and just be.

I know how an ideal, inclusive world is supposed to be. But I also know it doesn’t exist yet. And unless you have spent time in an exclusively special needs school, then you cannot understand what the students and families get from them. They get the same thing that everyone who shares an identity or common experience gets from spending time in the company of others like themselves.

Yes, I want inclusive education. But I would be lying if I said we didn’t experience something at that party that felt good and right.

And I feel all sorts of conflicted about that.

10 Keys to Success in Working with Special Needs Parents

IMG_4722Every now and then, I come across articles giving suggestions for interacting with parents of special needs children.  Usually, they’re written by an educator or a special needs parent and are well-meaning.  But I’ve noticed that they’re usually missing something.  Either they don’t have a clue what special needs parents go through or need.  Or they don’t have a clue what the real life of a teacher is like or the precarious position they are operating from when advocating for students and advising parents.  So, the suggestions are incomplete because they’re either unrealistic or coming from a place of not knowing.

I’ve had the unique experience of sitting on both sides of the IEP table.  I’m both a veteran teacher and the parent of a high needs child with nonverbal autism.  And that gives me insight that’s both helpful as well as painful.  It’s difficult to sit in on an IEP now – either my own child’s or someone else’s – knowing what I know.  I want to jump in and say things that might not be welcome.  I want to fight for services I know there is little money for.  I want to bang my head on the table, knowing all too well how what I’m hearing will come across to the child’s parent.  I want to lash out, because I know when I’m being “handled.” I know, because I’ve been – and am – in their shoes, both the educators’ and the parents’.

Here is what I wish my colleagues knew about how to forge positive relationships with parents of special needs students:

  1. Assume nothing. Over the years, we meet a lot of parent types.  And like everybody else, we tend to categorize them.  We quickly infer whether they have an education, are likely to help their children with homework, or if they know anything about their child’s disability.  We then react or condescend accordingly.  Be careful about that.  I’ve met highly educated parents who know little about their child’s differences.  And I’ve known poor parents with terrible grammar and threadbare clothing who’ve researched their child’s condition tirelessly. People will surprise you, so make no assumptions based on appearance, community standing, or diction.
  2. Understand that the child you work with isn’t the child they live with. You’re seeing just a snapshot of that child in an environment that can be stressful, unfamiliar, and unforgiving.  The child you believe to be distant may be quite loving at home.  The child you believe won’t communicate at all may very well communicate with his siblings.  Remember that no one is the same in all settings. Not even you.  Once you learn what a child is capable of outside of school, work to create a similar comfort level in the school.
  3. Give them a chance to talk. Special needs parenting can be a lonely affair.  While friends are posting about baseball wins and science fair prizes, our children’s successes aren’t easily appreciated by all.  But parents of children with disabilities have the same need to brag on our children, to voice our fears, and to soak up all the little stories you can share with us.  It matters.  And this meeting with you may be the only chance they have all year.
  4. Ask for their insight. Just because they might not be fluent in educational or therapeutic terminology (or they may be), it doesn’t mean they don’t have unique insight into their child.  Listening to how the child functions at home and in the community can inform how you approach instruction, behavior management, etc.  There’s no lab quite like living with a child with a disability.  Respect their experience, and benefit from it when you can.
  5. Reward their child. Often, special needs kids aren’t recognized in front of their peers and their community.  This is defeating to everyone. The students need their accomplishments celebrated. Even if they aren’t cognitively capable of understanding the award being given, everyone can benefit from applause now and then. Peers need to learn to appreciate different kinds of success.  Parents need a moment to feel proud and take pictures.  Our communities can always use a smile.  Don’t forget your special needs students when it comes time to celebrate.  You may have to come up with creative and unusual rewards.  But do it.  And do it up big.
  6. Give the gentle nudge, and then walk the first step with them. If you want the parent to register with an autism center, special needs athletics, or a parent support group, take it one step further beyond merely mentioning it.  Facilitate an introduction, if possible.  Send a link by email.  Ask for a flyer and personally hand it to them.  Sometimes the daily life of a special needs parent is overwhelming.  You intend to do things, but other stuff gets in the way.  If you can, help them get started in things you think might benefit them and their family.  It might be just what they need but don’t quite have the energy to initiate.
  7. Offer support services for their other children. Alicia Arenas gave a wonderful TED Talk about “glass children” – the children of special needs siblings.  These kids have their own needs that are often unmet.  They may go years without ever being able to speak to anyone who knows where they’re coming from.  Start a support group for siblings of disabled students right in your school.  Give them a place to share their experiences.  This will support the entire family and earn you brownie points with parents who worry just as much about their typical kids – but, by necessity, must focus more attention on their siblings.
  8. Surprise them with positive emails and text messages. It’s funny how many school districts frown upon this sort of thing.  But they’re foolish to do so.  There is nothing that will put a parent in your corner quicker than to send random positive pictures and texts home.  I don’t have time to talk on the phone.  But a text in the middle of my day showing him participating in circle time with a “He did ____ today!” melts my heart to goo.  A teacher or aide taking time to do that convinces me he’s loved – which will go a long way to forging positive parent-school relationships.  Learn how to use the little emoticons and apps that will cover other kids’ faces from the photo and text happy things about your students.  It’s a sound investment.
  9. Help their peers to interact with and understand their children. Teach acceptance.  Talk about differences.  Start a lunch buddy program.  Read stories aloud that will foster empathy.  Push, cajole, and fight for the emotional well-being of their children in school.  Not only will this do much to increase parents’ confidence in the school, it will have a direct impact on the child’s school performance.
  10. Tell them the truth. If you know that services they want for their child will not be approved by higher-ups, do not lie and say they are unavailable in your school.  Technically, there is no such thing as “not available” – if a student with a disability requires it to learn.  Tell the parent to call for an IEP meeting, make your recommendations to the staffing specialist/ESE director/principal, etc., and make the higher-ups address the request.  Yes, advocating for students and not incurring the wrath of administrators is a balancing act.  But by playing a part in dishonesty, you are ultimately perpetuating the cycle of students in your district not getting needed services.  And that’s not why you became a teacher.

IEPs and some interactions with special needs parents aren’t always fun.  Lack of funding and awareness are to blame – although the system pits parents and schools against one another.  But it doesn’t have to be that way.  My son’s IEP team laughs, shares cute stories, celebrates successes, speaks honestly about expectations and struggles, and generally functions beautifully.  But that didn’t happen magically or overnight.  In the end, positive school-parent relationships are key.  Invest in that, and you invest in both your students as well as your own happiness as a professional.

Letter to the NEA: “On the Chronically Tarded and Medically Annoying”

k11878021Recently, a speech by NEA President Lily Eskelsen Garcia on what teachers are expected to do each day flooded social media.  While many shared the clip and applauded some of its excellent points, it didn’t take long for outrage to set in.  When discussing the challenges inherent to differentiating classroom instruction, Ms. Garcia listed a series of learning disabilities that ended with the phrase “the chronically tarded and medically annoying.”  That didn’t go over well with a lot of people, including me.

Setting aside my initial dismay at her choice of words, I was further disappointed by your response to the controversy.  First, there was a delay.  Now, this video went viral.  I personally saw it dozens of times in my Facebook and Twitter feeds.  Had I been her, the moment I realized I’d thrown out the word tarded, I wouldn’t have waited to correct it.  I would have immediately raced to my social media accounts and begged forgiveness for my verbal blunder.

She didn’t do that.  A month following her speech, she tweeted to the effect of it was an error (“stepping on a word”) combined with a poorly conceived joke.  (I’m guessing social media’s negative reaction to those tweets is why she deleted them shortly thereafter.)  I confess that like other advocates for special needs, I’m having difficulty with her explanation.

chillThat’s because the rest of the speech was fantastic. She channeled her inner Winston Churchill in a way that was well-considered, thought-provoking, and passionate.  At first, I was cheering her on and enjoying that feeling of “Yes, she’s speaking for us!”  Then came the tarded and annoying line, and my jaw dropped.

I have no idea whether or not she accidentally tripped over the word tardy or not.  I could have bought that and probably would’ve with a prompt and dignified apology – were that the only problem with her sentence.  But it wasn’t. It was followed by the phrase “medically annoying.”  She explained that was a badly worded joke, triggering a real “What you talking about, Willis?” moment for me.  As I said, the rest of her speech was excellent.  And, see, stirring speeches don’t happen by accident.  Churchill’s iconic rallying words weren’t extemporaneous and neither were hers.  She obviously took some time with it. It was the kind of speech or essay a writer goes over and over, picking out the weeds, because you know it to be truth, and you want that truth conveyed.  I find it difficult to believe she wouldn’t have questioned her joke.  Since all of the other items in the series preceding it were a legitimate, non-humorous list of learning disabilities, it doesn’t even make sense to have the last two be jokes out of context. And the second one is a play of words on a phrase used to describe children who are hooked up to tracheostomy tubes and portable oxygen.  How could that possibly seem like a good joke?

Next, she posted her video apology and elaborated on the same explanation.  I’ve already stated why many of us are unsatisfied with it.  However, I wasn’t lining up with those demanding her resignation.  (Since I don’t purport to know where her heart was when she wrote that line, I’m not willing to sign a petition for her removal.)  But her apology video is where things got worse.  She laughed.  She laughed about a controversy that – whether unkind or simply ill-conceived – had a lot of people believing she made fun of disabled children.  While serving as the president of the nation’s largest teacher’s union, a powerful group of people one would hope would be sensitive to the needs of special education students.  Special needs students who have families who love them dearly.  Families who struggle more than most to prepare their children for an uncertain future.  Mothers like me, up at 2AM writing to you on a laptop in the dark, awake with an autistic child who suffers serious sleep issues. And, instead of apologizing in a respectful manner befitting the high emotions surrounding this controversy, she laughed.  I hope it doesn’t come as a surprise that many of us did not share her amusement. There’s a…not-so-subtle tone of censure in her laughter for any of us crazy enough to believe that was her intention. Perhaps it wasn’t her intention to say those things. But since she did, she fails to see the onus is on her to prove it – not giggle about it.

But even that’s not what’s most upsetting.  Now, I’ll admit I’m not familiar with the inner workings of a large advocacy group, but I cannot imagine an organization as big as the NEA doesn’t have a team on this.  Not solely dedicated perhaps, but I’m guessing you folks at the very least held a meeting on this drama.  A meeting staffed with some highly educated people in the education profession.  Since I doubt she prepared, produced, and posted the video all alone, that means that other people in the top seats of the NEA also thought the response to be an appropriate one.  That’s what’s really bothering me.

You see, not only am I the parent of a special needs child, I’m a teacher.  I am also a fellow NEA member.  I am one of you.  And today I’m embarrassed to be associated with you.

No, I’m not calling for anyone’s resignation. There’s entirely too much of that sort of thing these days, and I’m sure you’re probably perfectly nice people who’ve made some errors in judgment. But I want you to know – because it matters – how your handling of this situation has disappointed our profession by further damaging already shaky perceptions parents of special needs children have about public education. Not by a simple mistake, but a series of them – highlighting your (and, by association, teachers’) insensitivity and lack of respect for the very people we seek to serve.  Children.  Since you are teachers, I shouldn’t have to remind you of the higher standard to which we are held.  Simply put: The “largest labor union committed to advancing the cause of public education” either inadvertently or intentionally insulted our most vulnerable students.  And then voted to post a video laughing about it. 

 What you’re supposed to do when you hurt people is apologize, quickly and respectfully.  You’re supposed to be forthright in your explanation.  And if you are a major policy leader, you’re supposed to shout your dissatisfaction with your actions and commitment to improvement from the rooftop.  That fact that all of you couldn’t see to do that doesn’t speak well for your advocacy for special education students and teachers in this country, who are presumably included under the umbrella of your mission statement.

I sincerely hope you hold another meeting.  I hope that you don’t choose to chalk this up to a culture increasingly easy to offend.  You are the National Education Association. I implore you to understand that more is and should be expected of your leadership.  What we do and whom we serve are too important for flippancy.

Teacher, teach thyself.

 

Best Picture Books about Autism

A few weeks ago, I was asked if I might be willing to come in and talk to a group of kindergarteners about autism. Of course, this isn’t just any group of kindergarteners. It’s my autistic son’s peers. So, I wanted a read aloud or two, and I wanted them to be good. Being a school librarian, I know that there are an awful lot of children’s books out there. So, I asked the most qualified people I know –my readers — to offer their suggestions on my Facebook page. I got a lot of them.

I couldn’t afford to buy them all, so I ordered several that seemed to fit the age group and read them all in one sitting. No, I didn’t like all of them. I’ve included only the ones here I’m recommending. Simply because I don’t find negative reviews useful to an audience of readers who already have limited time. I tend to shy away from the preachy ones, believing that children are much savvier readers (and listeners) than we give them credit for. And I like books that are a bit subtle and lend themselves to fruitful discussion. Because that’s where you reach hearts and minds.

1. Looking after Louis by Lesley Ely, illustrated by Polly Dunbar

lookingLooking after Louis is the story of a little boy, Louis, who is autistic and is a student in a regular elementary classroom. His friend, an unnamed little girl, narrates the story as she and her classmates try to understand Louis and some of his unusual behaviors. Louis repeats what others say. He colors pictures that others don’t understand. He runs about through the children’s soccer game. Though the children are sweet and generally accepting of Louis, they do begin to notice that Louis is allowed to do some things they aren’t – and point it out. But then a moment comes along in which everyone recognizes Louis’s effort to communicate something special to him. That leads another child to invite Louis to play with him, but it isn’t recess. His teacher, understanding that this is a teachable moment, allows them to go outside with Louis’s aide. The little girl at first resents what she views as special treatment, until her teachers gives her a moment to consider her opinion. Ultimately, she decides that sometimes it’s okay to break rules and expectations for special people – thus supporting the idea of inclusion in the regular classroom. It’s okay that some things are different for students who require it, but everyone can be friends.

I really liked this little story, mainly because the range of emotions for these children is honest. At times, they are encouraging of Louis. Sometimes, they are bewildered. And others they are a little resentful of what they view as unfair. However, because of their teacher’s open and accepting handling of Louis, they learn about the true spirit of inclusion. This would make a great read aloud that could lead to a productive conversation about differences. Instead of telling, this book shows what a tolerant and welcoming classroom should look like – a point in its favor and one that distinguishes it from preachier special needs children’s literature. Recommended.


2. Andy and His Yellow Frisbee by Mary Thompson

andyAndy and His Yellow Frisbee is the story of Sarah, a new girl at Andy and Rosie’s school. Sarah has noticed Andy, who is autistic, each day at recess, spinning the same yellow Frisbee over and over. She decides to try to connect to Andy by inviting him to spin her pink Frisbee, which she has clearly brought from home in an effort to engage him. Andy’s sister Rosie, playing soccer nearby, faithfully watches over him. She becomes concerned when she sees Sarah sit down next to Andy, knowing that others do not always understand him. She leaves the game and comes over to observe them, seeing Sarah’s gentle effort to interact with Andy and her acceptance that perhaps he’ll choose to do so on another day. Sarah and Rosie decide to play Frisbee together.

I loved this subtle story of acceptance, probably because Sarah reminds me of my daughter. Between Sarah’s effort and Rose’s calm but protective wait-and-see, this story gently conveys to typical children that there is no magic formula for interacting with someone who is autistic. What’s important is to realize that effort does make a difference, even if there isn’t an immediate reward. Andy did notice Sarah’s Frisbee offering, though he continued to play by himself. Sarah’s acceptance of that is beautiful and will serve as a model for typical students wanting to interact with their autistic peers, but unsure of how to do so. Andy and His Yellow Frisbee isn’t what I would choose as a first read aloud when introducing the concept of autism to typical students, because its focus is narrower. But I think it’s ideal as a follow-up later to reinforce lessons on differences and to help students learn to engage with their autistic peers. It is also a lovely story for protective siblings of children on the spectrum. Recommended.

3. Ian’s Walk: A Story about Autism by Laurie Lears, illustrated by Karen Ritz

ianIan’s Walk is the story of siblings Julie, Tara, and Ian – who is autistic – and their walk to the park. Julie initially doesn’t want Ian to tag along, but gives in when he whines. Her mother admonishes Julie that she must be sure to keep a close eye on Ian. As they head out on their walk, Julie observes the different ways that Ian hears, sees, smells, and feels things. Even though she makes these observations, she finds herself frustrated with the inconveniences of Ian’s differences and loses her patience. When the girls stop to get pizza, Tara reminds Julie to watch Ian. But Julie is distracted and suddenly realizes that Ian has disappeared. The sisters race about, frantic to find their vulnerable little brother. Then Julie focuses and decides to think and experience their surroundings like Ian – where would he be? Sure enough, that’s how she finds him, making the big bell at the park gong back and forth. Julie is so grateful he is safe that she now has a new perspective on their walk back. This time, she allows Ian to enjoy the walk as he wants to experience it, allowing him to stop and immerse himself in the sights, smells, and sensations he loves.

Ian’s Walk is a beautiful story with a simple plot, but one that conveys the complex sibling relationships inherent in special needs families. It’s an obvious story to share with siblings of autistic and special needs children (or even in support groups for such). But because the story also describes so well many aspects of autism and sensory integration disorder, it would also be a great introductory read aloud for the topic. My 7-year-old loved this story and recognized both her brother in the story as well as her own emotions in it. Recommended.

4. My Friend with Autism, Enhanced Edition with CD by Beverly Bishop, illustrated by Craig Bishop

myfriendwithautismMy Friend with Autism isn’t a story so much as a narration by a peer, who tells readers about his friend, who is autistic. It begins with an explanation of all the things his friend is good at – hearing, seeing, touching, tasting, being smart, etc. For each thing his friend is good at comes an explanation of how that affects the friend (examples: extra-sensitive ears that hear before others but cause him to sometimes cover his ears). This part is a positive outlook on autism, but matter-of-fact. There is a shift about halfway through when the narrator explains that – while his friend is good at many things – there are some things that are difficult (talking, understanding feelings, sharing, etc.) What’s good about this part is how the narrator makes suggestions of what can be done to help the friend when these things occur.

My Friend with Autism is a practical and positive introduction to autism for typical students. It treats autism as something children shouldn’t worry about and conveys to them that they really can be friends with their autistic classmates. This enhanced edition comes with a guide for adults that includes factual information about autism as well as tips for working with children on the spectrum. The CD includes coloring sheets of pages from the book for children to enjoy after the read aloud. I would suggest this book as a first read aloud for an inclusion classroom to be followed by one or more of the other stories in this list.

If you have shared any of these wonderful books with children or students in your life, please comment below.  I’d love to hear from you.  🙂

Note to publishers and authors: I’m happy to update this list over time, should you wish to send me a review copy. I’m interested only in picture books. I simply don’t have the time right now to read and review novels. Send queries to: flappinessis@gmail.com.   

 

The SPECTRUM Alert: An Autism Elopement Protocol for Schools

elope1edit_edited-1On October 4, 2013, Vanessa Fontaine’s worst nightmare came to life.  Despite having warned her autistic son’s school that he was prone to wandering, her son ran right out the door of his classroom – past cameras and a security guard – and vanished.

 

Her son Avonte’s remains washed up from the river three months later.

 

In May of 2014, a nine year old autistic child from Bellevue, Nebraska, left school – unnoticed, surprising –and frightening–his mother by walking in the door and asking for a snack.  Her son functions at the level of a 5-year-old and crossed two busy streets to get home, with no understanding of how to do so safely.

 

Again, in May of 2014, another nine-year-old child on the autism spectrum left his Oakland Park, Florida school early and walked 12 blocks home.  He was found trying to get into his home through a window and later described chatting with a complete stranger along the way.

 

These aren’t the only incidents of autistic children wandering from school (commonly referred to as “elopement”)..  Following such stories, we usually hear school districts “express concern” and pledge to “work with parents to ensure their child’s future safety.”  I’m sure they mean it and will probably try.  But what do they say to mothers like Vanessa Fontaine?  Her son’s school can’t work with her now.

 

The vast majority of U.S. schools do not have an autism elopement protocol.  It’s not because they can’t afford it; an effective protocol like the one I will propose here is mostly free.  The reason schools don’t have one is simple — they don’t realize they need it.

 

In the not-too-distant past, many students on the spectrum would have attended special needs schools.  Such schools usually have a depth of experience with elopement.  But mainstream schools usually do not.  Inclusion has been a big thing in American education, with autistic students now attending class now with their typical peers.  However, these students do not always have the support they need.  Teachers and staff rarely receive autism-specific training.  Human beings make mistakes.  Doors get left open.  And, in the chaos and panic of discovering a child is missing, bad split-second decisions are made in the absence of an effective plan.

 

Today, one in 68 children is diagnosed with autism. Statistically, half of them will elope, and more than a third cannot effectively communicate their name, address, or phone number. (An even higher percentage will struggle with communication beyond this.) And autistic children are often drawn to water. Of the children who are found dead as a result of elopement, 91 percent will be found in water.

If a school district’s plan to address autistic elopement is merely to wait for it to happen and call police, they are planning for tragedy.

 

After consulting with members of law enforcement, here is a protocol I’m suggesting to my child’s school district.  I’m calling it The SPECTRUM Alert for Schools.  The important thing to remember is that this alert/code will necessarily look different for each school.  To be effective, it must be planned by individual schools based upon their location, size, design, proximity to water, etc.  The SPECTRUM Alert is not a ready-made plan, but a roadmap for designing one .

 

S  (Search grid)    In conjunction with law enforcement, the school and surrounding community should be mapped out on a search grid.  If the school is fenced in, there should be a perimeter walk to determine any areas vulnerable to elopement.  From there, the grid should expand outward a mile or two, taking into account any and all bodies of water, dangerous intersections, train stations, parks, playgrounds, etc.  School personnel not directly supervising students should already know and have practiced reporting to their assigned search areas.  Note:  Water should always be searched first.  No matter what.

P   (Pre-identification)    Each child prone to elopement should have on file a Quick Reference Sheet.  This should be compiled by the school with the assistance of parents and possibly personnel who have worked with the child previously.  It should contain the following information:

1. Child’s identifying information

2. Presence of GPS tracking technology

3. Current photograph

4. Child’s current level of communication

5. Child’s documented interests, behaviors, preferences, aversions, etc.

6. Health considerations

7. List of possible locations the child might go within the search grid

E  (Law Enforcement liaison)    One person’s job should be to call law enforcement immediately.  This should happen while the search begins – not following it.  In addition to contacting 911, this is the person who should contact parents immediately.  The liaison could also commence activating a “phone tree” already set in place by parents.  That phone tree might include friends, family, and neighbors willing to assist a search.  The child is likely to know these people well and may respond to them more easily.

C  (Code)    Typically, schools have alert codes.  In my district, they are based on colors and represent different emergency situations.  Students and staff know how to respond to each code.  A code should be called on the intercom.  This will keep students out of the way of the search party.  Teachers should be instructed to quickly look into the hallway and out windows and alert the office if they see the child in question.  In upper grades, it might also be possible to have students assist in a search in teams on school grounds.

T  (Training)    All school personnel and school resource officers should receive training in autism.  Such training can often ward off elopement incidents to begin with. That training should include information in sensory integration disorder, social difficulties, literal thinking, common triggers for meltdowns and elopement, law enforcement considerations, food aversions, bullying and autism, self-stimulation, and more.  It would be a good idea to consult an organization like CARD (there’s usually one in your area) and a behavior analyst in planning this training.  A 15-minute after school meeting isn’t going to suffice.

R  (Relationships)     Law enforcement, school personnel, and school resource officers should be encouraged to develop positive relationships with autistic students, who are often very literal in their thinking and may fear the police, based upon what they may have seen on TV.  Classroom visits in non-emergency situations should occur so that in an emergency ,these children will not fear police and jeopardize their recovery.  As soon a child prone to elopement enrolls at the school, the faculty and staff (including cafeteria workers, bus drivers, etc.) should be notified.  They should see the child’s photo and learn his or her background information.

U   (Understanding)     Common triggers that distress students on the autism spectrum should be understood by all staff, including substitute teachers and volunteers.  By stressing the Understanding component of this plan, schools can often avoid the situations that might prompt an autistic student to elope from school.  Because special events in gyms, auditoriums, and cafeterias are often painful to the senses of autistic students, there should be a careful plan to avoid subjecting these children to trauma.  A trigger for elopement could easily go unnoticed in the chaos of an activity day.   This component is the most powerful part of this plan, though the least understood if effective training of staff doesn’t occur.

M  (Media)     Radio, television, and social media are powerful when it comes to locating missing children.  A media strategy should be considered by the school district and law enforcement for use with autistic elopement situations.  Facebook would be a particularly useful tool in small cities.

 

Ideally, the SPECTRUM Alert will not be confined to the school.  Local law enforcement could enhance this alert system by allowing special needs families to pre-register a vulnerable child with the department in the event of a wandering incident outside of school.  Schools with personnel that could be made available to police departments for autism training would make this even easier.

 

The SPECTRUM Alert protocol would cost a school district little to no money.  Most of it involves planning with personnel already on the payroll.  It’s simply a matter of a school making the choice to plan for an elopement incident and putting it into practice.

 

Human beings are by nature inherently optimistic creatures.  We tend to go through life not prepared for the worst out of a self-protective need to believe it won’t.  But schools cannot afford to do this with regard to autistic elopement – any more than we can afford to not prepare for fires, tornadoes, or armed intruders on campus.  As educators, are in loco parentis.  It’s the prime directive for our profession – to do for our students what we would do for our own children.  Including the most vulnerable ones –like mine.

 

It’s time for every school district in this country, without delay, to adopt a SPECTRUM Alert for Schools.

Hear Me Roar: Inspirational Songs for IEPs (a Playlist)

noteThanks so much to my wonderful followers on Facebook for contributing to this playlist.  There are some great suggestions — including several I’d never heard before.  Play this in the days leading up to your child’s IEP, mediation, resolution, etc. — and go advocate for your child!

Let me know if you think of any songs I should add.  🙂

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

Losing My Convictions

buttingheadsNot so very long ago, I knew what I thought about things. I could debate them point by point with relative ease and felt comfortable with the conclusions I reached. I identified myself as a libertarian-leaning Republican – conservative both fiscally and in terms of defense, but socially liberal. Central to my thinking is the sincere belief that most things the government undertakes turn out to be disasters. I am suspicious of decisions made by committees and generally believe the fewer cooks in the kitchen the better. And – raised by a lawyer – I’m equally suspicious of new laws and constitutional amendments, believing them to often be the result of emotional reactions rather than well-considered policy.

 But convictions are a funny thing. Sometimes all it takes to shake up your belief system is a personal experience with what you didn’t know before. The fundamentalist Christian mother who finds herself loving a gay child. The pro-life couple whose amniocentesis shows a baby whose genetics are incompatible with life. The anti-marijuana legalization police officer who is racked with pain from bone cancer and nausea from chemo. The fiscally liberal woman who finds taxes and regulations strangling her small business. Life is like that sometimes, and irony mocks us.

 Five years ago, I had many convictions. One of them was a sincere belief that the Department of Education was the worst thing to ever happen to U.S. Education. My belief in that wasn’t based merely on my party’s stance. Unlike a lot a politicians, I actually graduated from a college of education. I have been trained in ridiculous theories, participated in wastes of expenditure, and seen firsthand the effects of an educational culture that values test scores over knowledge. I still believe that U.S. educational policy is absurd and that each new generation is just a bit more ignorant than their parents. It’s why I send my daughter to a private school, and I won’t apologize for that. But now I find myself unsure of my prior held convictions – and that’s because of Callum.

 You see, I now know that I’m a hypocrite. I’m a hypocrite because I am now depending upon the Department of Education and federal law to protect my child from a substandard education. If it were not for the IDEA, my son would not have any of what he has now nor would he have anything I am fighting for him to receive. If it were not for state oversight, school districts would not provide for his special needs. IDEA safeguards are the only big sticks available for me to carry as I walk softly through the IEP battleground. Now I find myself dependent upon the very agency I generally abhor. So, I’m a walking, talking hypocrite. And that has a lot of implications for many of my core beliefs.

 What else do I hold to be true – until I have walked in the shoes of one directly affected by it? What other political philosophies are incompatible with the needs of other human beings just like me? How can I gratefully accept that which I have decried – or voted against?

 Becoming the mother of a special needs child didn’t just shake up my world; it shook up my mind. I am not lost so much as I am now aware of everything I don’t know. Suspicious of every viewpoint I hear. And for a very simple reason – most people know not of what they speak. Not really know. They’ve heard about it. They’ve read about it. They imagine how they would feel if it were them. They compare it to something they know that isn’t entirely (or at all) related. And they espouse – and vote –from the comfort of their unaffected lives.

 That realization has left me without many convictions, cast adrift in a sea of political parties who don’t represent me at all. Reading social media commentary from friends and family who don’t yet realize the ease of becoming a hypocrite as well – when life runs up and knocks them over on the playground. People who haven’t yet had to fight for the well being of another. Who haven’t been desperate, shunned, violated, sick, divorced, disabled, broke, or any of the myriad occurrences that can shake up one’s world. People who weed their friends list based upon political parties or religious views. People who don’t know – or yet know – what they would really think if it happened to them.

 I see very little of the world in black and white these days. It’s all a bunch of varying shades of gray. Which makes it hard to wholly embrace any viewpoints at all or cheer any platform. Instead my mind immediately goes to “What if it was Bronwyn? What if it was Callum?” And then I have my answer., at least for me. The problem is that no political party exists whose mission statement is to do unto others as they would have done unto them. And none of them will admit “Clearly, what we thought would work didn’t. Let’s start over.” Which is exactly what we need with regard to education, health care, taxes, drugs, and so much more. Until that happens, color me unimpressed and label me an independent.

 In the meantime, World, please just…be kind to one another in how we define our problems. It’s rough out there.

“I don’t believe in superstars
Organic food and foreign cars
I don’t believe the price of gold
The certainty of growing old
That right is right and left is wrong
That north and south can’t get along
That east is east and west is west
And bein’ first is always best
But I believe in love
I believe in babies
I believe in mom and dad
And I believe in you.”

-Don Williams, “I Believe in Love

 

 

DIY Teacher Appreciation Gifts

fanta

“You are a Fanta-stic teacher!”

During the course of Teacher Appreciation Week, here are some of the charming and and creative gifts I’ve received.  These were all made by a member of our staff, Ms. Amy Getchell, and a parent volunteer, Mrs. Dawn Busey — as well as students from our school.  They are simple gifts, but they meant a lot to our staff.  All of these can be easily accomplished, and most would also make sweet gifts for your child to give his/her teacher any time of the year.

If you have any pictures of DIY Teacher Appreciation Week gifts, please share.  🙂

"Thank you for quenching our thirst for knowledge."

“Thank you for quenching our thirst for knowledge.”

 

 

For school office staff and instructional assistants: "Without you, our school would have fallen to pieces."

For school office staff and instructional assistants: “Without you, our school would have fallen to pieces.”

Decorated Doors for Every Teacher

Decorated Doors for Every Teacher

Decorated Doors for Every Teacher

Decorated Doors for Every Teacher

"Thank you for all the Extra work you do."

“Thank you for all the Extra work you do.”

Smores1

“We need S’more teachers like you.”
W/ heating instructions on the back.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A highlighter for "making us bright", paper clips for "holding everything together", pencils for "being just 'write', and a charming duct tape pen flower.

A highlighter for “making us bright”, paper clips for “holding everything together”, pencils for “being just ‘write’, and a charming duct tape pen flowe 

 

 

 

 

 

 

All tucked into a cute bag.

All tucked into a cute bag.

 

 

 

 

 

 

 

 

 

 

 

 

How to Explain Autism to Typical Kids (and Lots of Others While You’re at It)

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing.

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing just this time last year.  I loved that I didn’t have to explain autism much to him.  He just had an affinity with Callum and understood him.  He found him fascinating and was always trying to figure out what Callum was thinking.  They liked one another just fine.  🙂

Autism awareness and acceptance are good things. The more the average person knows about autism, the better it will be for the community — especially our autistic members. Yet, the average person can’t easily define autism. Quite frankly, our experts in autism don’t do such a great job of defining it either. It isn’t a simple concept, because it isn’t a simple state of being. Autistic people vary greatly in how they are impacted by their differences — from highly articulate individuals living full lives and advocating for themselves and others to severely disabled autistics unable to communicate in any way.

So, how, is the average parent/teacher/youth mentor supposed to help the typical kids in their care understand a condition that is so complex? How do we explain it to the unaffected kids who will inevitably encounter other children on the spectrum at school, church, and birthday parties? How do we help them to become not merely tolerant, but to welcome their spectrum peers and interact with them?  Continued at WhattoExpect.com.