On Inexplicable Tears and Autism

20526820_10211534346489166_946048970_nSometimes, out of the blue, Callum suddenly bursts into tears. Real crocodile tears and a quivering lower lip. It’s not when we’re out and about or in new situations or noisy environments – where you might expect for his senses to get overloaded and him to get emotional. It’s home, during quiet moments. Where he’s relaxed and comfortable. It’s after joyful bursts of hopping around, doing ball tricks, and endless repetitions of tickle-me. When you’d never expect it. And nothing I can do that he normally loves as comfort will soothe him. No back rubs or snuggles dry his tears.

Then, just as inexplicably, he stops and returns to his normally happy mood and playful self. I’ve often tried to figure out what’s happening, what’s wrong, what he’s thinking. But I can’t seem to do it.

Right now, I’m watching him looking out the front window after just such a crying spell. And I’m realizing that it’s not really my job to get to the bottom of his every emotion. He gets to have them too – no justification required. Perhaps he expresses them differently. Saves them up – stored until he’s in a safe place to process them all at once. The tears a release of the words he doesn’t have and can’t express – but like every other human on the planet, still needs to.

So, I think – other than quickly ascertaining if he’s in pain or wanting something I can provide – I’m just going to let him cry. Sit with him while he does and stop peppering him with so many questions as to the cause. And let him be himself, without me implying something is wrong in how he does it.

We’re not given instruction manuals for any child, but in a child like Callum, you can’t help but feel the lack of one even more. I hope he senses I’m doing the best I can.

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.

The Autism Parent’s 7 Keys to Sanity and Success

FullSizeRender (27)A few weeks ago, I received a heartfelt private message from a mother who is just confronting her young son’s likely autism diagnosis.  She had read a previous post of mine on recognizing signs of autism in your child and saw it in him.  And she was falling apart inside.  Her love for her son was evident, but she admitted she was struggling with her feelings of fear and worry and didn’t know how to move past them. She asked me how I coped with my own son’s diagnosis.  I’ll admit it feels funny to me to be asked that question just 6 years later.  I don’t quite feel my veteran status yet. But I realized that while I’ve been busy doing doing All the Things that I really have come far.  I’ve changed in ways I didn’t anticipate.  And she will too.  So, I made a list of what I think helped me to “cope” and, more importantly, what it’s been helpful to avoid.  Here is what I learned.

  1. I quickly realized that I needed a support group.  My own circle of friends, though lovely, simply couldn’t identify with what I was experiencing.  And they never will, any more than I can identify with bankruptcy or diabetes. I simply haven’t experienced it. Yes, they will still be important to you.  But you need to collect some friends who “get it” – both those who are where you are now and those who are where you will be in a few years.  For me, I found those folks online.  I experimented with a few online support groups and over time found people I could turn to on dark days.  Folks who were able to fully celebrate with me on good ones.  You need to process all of those emotions in a safe place in order to recycle them into something more productive for your child. And, more importantly, you need to make certain that he never views himself as something to be “coped.” Go join a few online groups today.  After a while, you’ll figure out which places you fit best.  Find your tribe. They’re out there. 

2.  I stopped saying, “Somebody needs to ______”, “There oughta be ______”, and “I wish ______.”  I realized that those things don’t happen unless someone makes them happen.  I decided to spend my time making things happen.  I started a nonprofit to bring elopement tracking bracelets to our county.  I began a Sensitive Santa ministry.  I asked the superintendent to allow me to begin teaching autism awareness in our school district.  I began a local special needs support group on Facebook.  I harassed our grocery stores into acquiring carts for those with special needs.  I joined a national research study (SPARK by the Simons Foundation). I did these things because doing feels better than not doing.  Because doing is contagious.  And because doing brings heightened consciousness of my son and his needs to the community he will one day live in as an adult.  A community I wanted to welcome and support him – but a community I knew wasn’t yet ready to do so.  None of this stuff was easy for an introvert.  But it’s far more therapeutic than waiting around for someone else to do it.  Because they never will. There is no someone else.

feta2.100.dpi5003. I immersed myself in learning about the IEP process, IDEA, special education, and now life after high school.  Do not be fooled into believing that a school district will have your child’s best interests at heart.  The people working for them will want to.  But their budgets are severely limited.  They’re trying to serve the most with the least.  That absolutely means they will attempt – however kindly – to limit the services your child receives.  That sucks for us all – including them (because schools ARE staffed with good people). But your job is your child, and you don’t want to have those regrets.  Read From Emotions to Advocacy by Wrightslaw.  Right now.  Don’t wait until there are problems. Don’t wait until he starts school.  Do not wait.  

4. I gave up the notion that communication must equal speech.  They’re not the same.  Your son might speak verbally.  He might not.  But he can be taught to communicate right now.  It might be via pictures or other assistive technology. (In my opinion, that’s not sign language.  He’s not deaf, won’t be a member of the deaf community, and just how many people do you know who are fluent in it?  He needs to be able to communicate in a way that the most amount of people can understand him immediately.) And don’t let anyone convince you that alternative means of communication will prevent him from speaking.  All evidence is to the contrary.  But hear me on this:  Nothing – and I mean nothing – is to take greater importance than teaching him to communicate in whatever way he proves able.  Once he can communicate effectively, everything else gets better.  Most importantly, for him.

 5. I found an excellent behavioral therapy clinic.  Those folks were the cavalry arriving.  I made certain they were a good fit – for some are better than others.  (There were dark days in behavioral therapy in the past, so you need to interview them and make sure you’re on the same page.)  I insisted that my goal was not to make him not autistic, but to help him to fully access his world to the extent he’s able.  To help him to communicate and to learn.  To assist me in learning how to positively shape his behavior.  To assist me in learning how to teach him myself.  They know how to do this without screaming, crying, and desperation.  I found a team who didn’t give a damn about flapping, stimming, and other recognizable autistic behaviors.  A team happy to let me observe and work with them so they could teach me how to help him too.  Keep going until you find the same.  But your life will change, because your child’s independence and happiness will change.  

6. I stopped following autism pages of people constantly whining and posting negative memes about autism (i.e. “Autism sucks.). Instead, I follow doers and advocates. (Feel free to go find some on my Page and Twitter.) That serves both my son and me.  My son is autistic.  Constantly reading and lamenting that something that is fundamental to his mind and life “sucks” isn’t helpful.  It’s not accepting. Ultimately, it’s not loving.  And it distracts from the good that happens and can be made to happen.  No, it’s not all sunshine and flowers.  (That’s what your support group is for.)  But I refuse to propagate a message that everything about my child is a negative.  Because all your friends, all your family, and even your community are watching.  They’re picking up your cues.  Do you really want to send a message that he’s a loss to be written off?  I’m thinking not.  And do you want to send him a message that he is less than who you dreamed of? No, I already know you don’t.  Share his triumphs.  Advocate for his needs.  It’s okay sometimes to share the sad stuff, so that others may feel compassion for his challenges.  But don’t compromise his worth to his community and his dignity.  You’re his protector.  That may include protecting him from yourself on bad days when you want to shout from the rooftops that toileting accidents suck.  They do, but would you want your loved ones to post it on Facebook if it were you?  Protect his dignity – whether you believe he’s aware of it or not.  You owe him that.

7. I took autism right out of the closet.  He is not a secret.  I am not ashamed by him.  It’s not my job to apologize for him, because he has nothing to apologize for. But it is my job to help his world understand him better.  I explain his differences to others, particularly other children (they’re miles ahead of adults in capacity to learn acceptance).  I allow others to ask questions and give them tips to better interact with him.  I encourage servers to look at the menu pictures he points to.  I give others a chance to help him navigate his world.  They want to.  They just don’t know how.  Help them.  If you need to, visit his classroom and talk to his peers.  Stand up and speak to your church.  Ask for what you think he needs. Later, teach him to ask for himself, if possible. You’d be surprised how good other people can be when you give them a chance.

Confidential to A.K.:  You can do this.  Because “this” is just loving and nurturing your child.  Yeah, it’s a stepped up level of parenthood for sure.  But I hardly need say he’s worth it.  If you’re not feeling optimistic the future will be bright, then operate on the assumption it will be.  Keep going and doing until you believe it.  Then do everything you can to ensure it. Have no regrets.  Try to remember that the child you envisioned never existed.  Stop mourning that child.  Because the child you’ve been blessed with has been here all along.  You just didn’t recognize him yet.  Love who he is.

Congratulations on being given this atypical little life to shepherd.  Yes, I said congratulations. I’m hoping that soon you’ll know what I mean.  And one day, I hope you sit and hold someone’s hand who is in the place you are now and tell them the same.  It really is going to be okay, because you’re going to make it okay.

15 Tips for Hosting a Sensitive Santa in Your Community

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A preverbal child approaches Santa in his own way and time.

Early on a Sunday morning our years ago, my husband and I drove our children Bronwyn and Callum an hour away to a mostly empty shopping mall for “Sensitive Santa.”  It was advertised as a Santa event for special needs kids.  Supposedly, there would be no lines, little waiting, and there would be efforts to make the setup more “sensory friendly” for children with special needs, in particular autism.  We made an appointment and had high hopes.When we arrived, we were disappointed to discover that there wasn’t anyone present to really manage the “appointments.”  There was a line, filled with children in wheelchairs, autistic kids in full meltdown, and babies with oxygen tanks.  No seating or room to allow them to wait comfortably.  And, although the mall was empty and fairly quiet, the Christmas train in the center court was still running, and we were all standing under the bright, florescent lighting that so many special needs kids are overly sensitive to.

 

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Another child is still “warming up” to the idea of Santa, who sits patiently nearby – with no pressure.

By the time we approached Santa – who barely interacted with the kids at all – we were disenchanted to say the least.  There was a photographer, who appeared to be a bored high school student.  We paid her $20 to take a single photo in which my son was staring off into the distance.  We escaped with our single photograph and a not so wonderful Santa memory. I got to thinking that this could be done better.  I spoke with a colleague, a school psychologist, who also attends my church.  Together, we came up with a plan and made it happen.  We’ve just finished our third successful year of Sensitive Santa.  Here’s what we did and what we’ve learned.

 

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    Sometimes we’re braver with daddy nearby.

    Location is key.  You’ll first want to secure the perfect place.  That’s not going to be a mall or shopping center.  You’ll want a place with gentle lighting.  And, ideally, it should look homey and inviting.  We chose our church’s “guild room” in our parish hall – which is a room normally used for confirmation classes and brides getting ready before weddings.  It has a couch, a fireplace, and is carpeted.  It helped that just outside the room are tables and a kitchen.  Churches can be perfect locations for Sensitive Santas, and it shouldn’t be too hard to find one who’d love to add this ministry.

  2. Partner with the school district. Go to the head/director of ESE for your district.  Explain what you want to do and that you’d love to enlist the help of volunteers from your school district – in particular, those who work with special needs students.  Our Director of Exceptional Education spoke with the Superintendent and approved double “comp time” for employees who signed up.  This partnership is ideal, because you’ll need a way to contact the families you’re targeting for this event.  Due to privacy laws, you won’t be able to get a list of students.  We made flyers and then gave them to ESE employees in the district who best knew the children.  Once those flyers went home and the families contacted us themselves, we were good to go.
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    David told Santa, “You’re my best friend.”

    Contact pediatric therapy clinics in your community. Give them flyers as well.  You’ll find even more kids this way.  Ditto for pediatricians, though you’ll need to be sure to stress that this event is strictly for special needs patients.

  4. Create a Facebook page with contact and registration info. I created a Google document that was accessible with a password I put right on the flyer.  Parents completed contact info, health background, and added specific information that would best help us to make the interaction positive.  (Fears, sensitivities, etc.) I also included a question about preference for morning or afternoon appointments.  Then I called the families and set an appointment time for them.  Be sure to get cell phone/email info.  You’ll want to send out a reminder text or email to avoid no-shows.  We don’t set an age limit for those with special needs.  Some remain true believers their entire lives, and that’s fine with us.  Siblings are ALWAYS welcome and are made to feel their time with Santa is just as important. Get family permission ahead of time to post their children’s pictures to your Sensitive Santa page and to perhaps be used with media.
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    This young lady adores Santa and the opportunity to spend a whole 15 minutes with him.

    Give each family a 15-minute appointment with Santa. Special needs kids, depending upon their disability, might need some time to warm up to Santa.  The 15 minutes will also allow the photographer (who will shoot continuously) to take photos of the family together, siblings, etc.  This is where it helps to have ESE employees as volunteers.  They may know some of the children and have ideas that will help make it a positive visit.

  6. Enlist help on social media. From just posting what we were doing and what we needed, we obtained ink cartridges, photo paper, coloring books (to entertain kids while they wait for their pictures to print), toys/gifts, paper products, etc.  We also located more volunteers this way.  It helped to create a private group for volunteers as well.
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    This photo was the first Jayden ever had with Santa. His mother left in happy tears.

    Ask a local restaurant or two to help feed your Sensitive Santa staff. Two of us organizers made slow cookers full of soup.  And a local restaurant made sandwiches to accompany them.  Be sure to acknowledge them on social media.

  8. Secure a photographer. We hit the jackpot with ours.  Not only is she a part-time professional photographer by weekend, she’s also an ESE teacher.  She had experience in coaxing great candid pictures with special needs students, which is ideal.  We also have a second amateur photographer who is a high school student.  While our main photographer did the Santa sessions, the student photographer walked around and shot candids all day of volunteers, families, etc.
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    But here’s what we had to do to get that photo. First, the photographer took Jayden to tour the kitchen and the rest of the parish hall. Eventually, we got closer to the Santa room. And that was okay with everyone.

    Hold a meeting with your volunteer staff. Brief them on each family attending.  Prep them for the various disabilities represented.  Volunteers will need to be reminded that certain children might become overwhelmed and adjust their approach accordingly.  Other children will love to sit and color Christmas pictures with volunteers or watch holiday movies on a nearby laptop.  Be sure to have someone whose job is to quickly remind Santa who is visiting next and to escort families in to Santa by saying, “Great news, Santa!  Bobby and Mary are here.”

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    This sweet young man took in Santa with his senses.

    Contact your local newspaper. Sharing the event with the community will help to ensure you have enthusiasm and donations/volunteers next year.  It also makes for a beautiful Christmas morning front page article that will warm hearts.

  11. For the photo session, don’t worry too much about posed pictures. Place a chair next to Santa, and put no pressure on any child to sit on his lap.  Some will run right to him and be happy to pose for a picture.  By all means, take those pictures.  But many, particularly those with autism, won’t ever look into the camera for a posed shot.  Instead, focus on natural laughter and interactions.  Take candid photos with a “photojournalistic” approach.  Capture the shy child rolling on the carpet.  The handshake with Santa.  Back up and take a shot of a child sitting on his dad’s lap while dad talks to Santa.  You might not get a “Santa picture” the first year.  But the child will remember the positive, non-stressful interaction.  And you might get one next year.  Our goal is always the same.  Children may enter crying.  But we do everything we can to never have one leave crying.  (It’s perfectly okay for parents to leave with happy tears, however!)
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    Children waiting on their pictures get to color, watch holiday movies, or eat cookies and hot cocoa — with no lines.

    Print just two to three photos per family. To keep it simple, have two SD cards.  As soon as a session finishes, the photographer hands the SD card to the printing volunteers.  They look through the photos quickly and select the best two or three.  They quickly print them and put them in an envelope.  We then instruct the families to go to our Facebook page starting that night and the next day and look for their pictures to be uploaded.  We include a letter from the photographer signing over all photo rights and permissions to families for the purpose of printing and posting.

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    Pretty sure this young man’s joy speaks for itself.

    Make a social media post for each family’s pictures.  That way they can share with family and friends.  And they’ll want to.  Many of these families will tell you their child has never had pictures with Santa.  It’ll mean the world to them.

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    Sitting on Santa’s lap isn’t necessary. Just hanging out nearby is okay too.

    Create a “best of” photo album (with one picture from each family) and cross-post to popular social media pages in your community. Be sure to tag your community partners.  It’s great PR for next year.

  15. Make notes about what went well and what you might do differently next year. Start your planning again in September, and make it a tradition.  It’ll be one of the happiest days of the year.

 

 

 

On Shortcomings and Attention Equity: Hard Truths in Special Needs Parenting

14628103_10208949304104722_2135956070_nThere’s nothing quite like parenting to make us confront our shortcomings.

Mr. Flappiness and Bronwyn are so very alike. They both have diagnosed ADHD – the kind that puts the H in ADHD, if you know what I mean. But they have all the other delightful traits that those with ADHD often have – the creativity, quick thinking, etc. that those of us who love them adore.

But because they are so very alike in temperament, interests, and sense of humor, in addition to the ADHD, they are close. They get a kick out of each other. Bronwyn often seems to prefer him to me, me being a little too low-key to entertain her some days. They’re two peas in a pod, my baby girl and her daddy.

Sometimes, I’m envious of her relationship with him — although I understand it. If ever a woman were a daddy’s girl, it’s me. I wish the introvert and lover of air conditioning in me were less so. She’s beautiful to me, but we’re quite different personalities. Since I share a temperament and personality with Callum, I know some things just are.

But because I love her so, sometimes I envy their closeness and worry – deep in the heart of the mother who raises both a typical AND a special needs child.  I both fear and mourn the certainty there is not enough of me with regard to my daughter. Her needs are great too. The problem is that Callum’s – who is autistic, high needs – are so very immediate and not delayable. 

Mr. Flappiness is on the road often now, and it’s taking its toll.  Big changes for all of us. Bronwyn is taking it hardest.  This morning, she woke up and came in to snuggle with me. She talked about how much she misses daddy and said, “The truth is, Mom, daddy is just more FUN than you.” Ouch.  

I acknowledged the difficulty she’s having, and I told her I’m sorry I’m not as much of her kind of fun (theme parks, producing videos, etc.) as daddy. And my sweet girl put her arms around me and then clarified, “Mom, daddy is more fun than you.  But you’re more loving.  I go to daddy for fun and you for love. That’s what I love about you best.”

Well, hell.  That’s for sure a conversation I’ll replay in my head obsessively as I continue raising these two.  But the combination of those big beautiful blue eyes – my grandmother’s – and those words?  Deep breaths kind of love right there.  Words that felt a little like absolution just when I’m sure I’m failing.  

She comes to me for love.

I may be doing lots of things wrong.  But I hope that statement counts. I have to be doing something right – right?

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.

 

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A Little Girl Laughed Today: On Special Needs Feel-Good Shares That Don’t Feel So Good

download (4)Today, I saw a scene that would have stopped you in your tracks, if only you knew what preceded it.  I witnessed a moment I wouldn’t have imagined in darker days for this girl.  I won’t tell you how I know her story, because I know her parents aren’t looking to make her famous. There were no photographs.

What matters is what happened.  And what happened stole my breath.  Because this girl has been picked on — badly.  She has suffered enormously with triggers causing behaviors that are alienating and confusing to others.  She has no friends.  

But today was amazing.  Today, some kids who took the time to get to know her a little – kids who have no knowledge of autism, but don’t really require it because they are innately kind and cheerful – made her laugh.  And watching her laugh made them laugh and smile and laugh some more.  They were three kids just cracking up laughing over something that was pretty funny in a slapstick kind of way.  She laughed for a long time.

It was beautiful.  Not in that “How sweet and heroic of him to take the autistic girl to the prom” kind of viral sweetness that draws you in, despite the lingering questions over what kind of romantic hopes the girl might have on Saturday morning.  Not in the way that whispers, “See what a wonderful person I am? I’m kind to someone you’d never expect.   But I did this amazing thing.  Let’s tell everyone about it and make her one day possibly reflect on how she is so different that only one selfless person wanted her company.” 

I cringe over these stories.  I do think that what many of these kids, celebrities, and strangers have done has been well-intentioned.   It’s the way we share it that’s bothering me.  It’s the way we gush over it and make special needs people famous for a day — because some person did what others would have considered unthinkable.  My problem isn’t the action taken.  It’s the echoes left behind after we’ve marveled so publicly.  The questions the girl may have about her own worth as a person — if the whole world went crazy over somebody being kind to her.  

A little girl laughed today.  I don’t have a video to share of it.  But I can describe it for you.  An autistic girl who rarely smiled and interacted with others – because of cruelty and the nature of her disability – laughed with other children today.  A child who had need of friendship, shared interests, fun, and laughter like every other child— but who was plagued by sensory overload and a lack of awareness and acceptance – laughed with other children.  Giggled and snorted even.  How I wish I could’ve recorded it – not for you nice folks, but for those who love her.  They would’ve cherished it.  

And she laughed because some nice kids took a genuine interest in her.  It wasn’t to make a point or get praise; they just think she’s interesting and wanted her company.  And she thought they were worth knowing and laughing with.  It’s a triumph for her.  I’m the only person who saw it, and that’s perfectly okay with me.  Because they know it, and she’ll remember it.  She made friends.  They were happy for her and for themselves.  And that means she’ll likely try it again.  I sure hope so.  I hope that she laughs a lot more in her life.

Mostly, I hope that her friendship skills continue to grow and that she makes the kinds of friends who will be nurturing and a pleasure to spend time with.  The kind who aren’t looking to make a public statement, but who intend to value her friendship beyond the viral tweets and shares.  I hope that one day nobody sees her as a surprising candidate for prom date — and instead just wave at her as they dance by.  I want her to hear messages that aren’t “Yay!  You’re here! We’re so surprised!” and are instead “Of course, you are here, because you’re one of us, and it’s where you belong.”

These are my hopes for her.  And my hopes for my own child.  The circumstances and events may change, but I hope for the same thing for all the kids not yet on the playground.  

A little girl laughed today — and took a few steps closer to those in her world.  Every day, I pray that others will meet her halfway — only without looking over their shoulders for the camera.

Because I don’t ever want her to see that camera and wonder why it’s there.     

Product Review: The Yogibo Max

yogiboIf you’ve followed me for any time, then you already know that I don’t write a lot of reviews. However, occasionally I’m in need of the same kinds of things that other folks might be in need of as well. When that happens and the stars align, I’ll get an offer to test a product in exchange for an honest review – and I’ll actually respond and say yes.

 

In recent months, Callum has made a lot of progress. His willingness to attend to a task has greatly increased, and we’ve been all kinds of busy looking for new ways to engage him. That’s when I received a very nice email from the folks who make the Yogibo Max “lounge chair.” The email mentioned that some special needs families have seen benefits to owning one and offered me the chance to try it out. I said yes, picked my color (from 16 color choices), and waited for its arrival. It didn’t disappoint.

 

I’ll start off by saying that the box it came in was initially a bigger hit than the beanbag. (Isn’t that always the way with little ones?) But as soon as I set it out in the living room, my little sensory seeker fell in love with it. It’s a kind of bean bag. But bean bag isn’t really a fitting description for this thing. The Yogibo Max is more like a really flexible piece of furniture. You can position it in any number of ways, and we’ve used it for everything from reading to the kids to playing games to sleepovers to the only place my husband could sleep for a couple of nights after pulling his back. It’s pretty nifty and much sturdier than cheap bean bags you’d pick up from large retailers.

 

yogibomaxfamCallum gets a lot of sensory input from it. He rolls around on it, takes flying leaps onto it, and interacts with whoever is already sitting on it when he decides to join. He has snuggled with his sister on it, giggled along with her friends on it, and verbalizes “Daddy! Tickle me!” while presenting his belly. He loves this thing. He’ll soon be having his beloved 1:1 aide working in our home this summer doing behavioral therapy, and I know it’s going to be a big draw for them as she keeps him moving and interacting.

 

All-in-all, it’s a great little all-purpose addition to our home. We got it in chocolate brown to match our furniture so that it doesn’t feel like we’re in a therapy clinic or daycare. The cover is removable and washable, so it’s easy to keep clean. And it can be easily folded and leaned to keep out of the way, if need be. We’ve had it a couple of months in a home with two hyperactive little ones, and it’s held up well.

 

If you’re looking for a sensory friendly, kid friendly, but practical lounge chair, I recommend the Yogibo Max.  (You can use the code FLAPPINESS for a 10% discount.)

There’s Still Time: Love and the Autistic Child in Your Life

windowOnce upon a time there was an autistic child. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores, and noisy restaurants. His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood– that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop, and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family had assumed he would — that  he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know.  And there’s still time to do it differently.

Bell’s Palsy: My Tour Guide to Autism

bp2In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.

But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.

Bell’s Palsy changed everything.

Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.

As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.

But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.

And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.

Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.

But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.

So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.

Of course, the most valuable lessons in life usually are.