Category Archives: Lists

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.

 

 

 

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.   

 

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.  :)

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.  

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

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

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

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

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

7 Tips for Being a Friend to a Special-Needs Parent

Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…

Tell It Like It Is – On Being Asked What It Is Like to Have an Autistic Child

Earlier this summer, a well-meaning acquaintance I was chatting with at a birthday party asked me an honest question — “What’s it’s like to be a mom of an autistic child?”  She wasn’t being nosy.  I happen to like her and know that she was genuinely interested in my experience.  But what I saw in her eyes was pity.  She even teared up while we were talking.  Those of us with special needs children know that look.  I called it The Look of Tragedy.  Again, she meant no harm.  So, I got to thinking.  What is it like to have an autistic child?  After all, they come in all sorts of shapes and varieties.  I’m just starting out on this journey, yet many have seen their children through to adulthood.  Some of our children will be self-sufficient.  And some will live with us or in a group facility for the rest of their lives.  So, I admit that I cannot answer that question for everyone.  But I can answer for me.  And, in that answer, I will likely be speaking for other parents of other very special children.

So, here it is.  Here’s what it’s like:

1.  To begin with, it’s [a kind of]* death.  No matter how much you plan to allow your children their freedom to achieve their own dreams, quite naturally you have a few dreams for them as well.  You dream of birthdays and holidays.  Santa and presents.  Playing dress-up, doing arts and crafts, playing Candyland, dance classes, Boy Scouts, sleepovers, team sports, high school graduation, getting married, and having children of their own to love.  And, though many of our autistic kids will grow up and have and do just those things, more than half of them won’t.  At least not without a great deal of assistance and likely not in any resemblance of the typical joy of those things.  So, you mourn.  You mourn for what might not be.  You mourn for what you and they are missing now.  And, later, you may mourn for what will never be.

2.  Despite the death of the dream child you envisioned, you are deeply in love with the child you have.  He still does adorable things you want to share with others.  He loves you too, but the rest of world won’t always get to see it.  Because when he is away from home, he is not himself.  He is not the happy, affectionate child who holds your hand, snuggling, and gazes at you adoringly while pulling your hand to scratch and rub his back.  They won’t get to see him at his most charming and you will know they are so very glad they aren’t in your shoes.  You will see pity in people’s faces.  And they won’t ever understand the very real, profound joy this child gives into your life every day.  Part of being a parent is pride in your children.  People won’t see what you are so proud of.  And that can be a lonely feeling.

3.  Guilt assails you from all directions.  You want to throw a beautiful birthday party for your child.  But he may not notice.  He may not be the least bit interested in the presents, and you will dread any look of disappointment on the giver’s faces.  He may be struggling to get down out of your arms during the party, and there is an air of sadness just beneath friends’ and family’s smiles.  So you consider not having a party.  You consider not taking him to others’ parties.  You want more than anything to give your child the experiences typical children have and feel guilty when you don’t.  But sometimes it is simply too overwhelming for you both to undertake it.  Therapists want you to spend hours doing activities to help him, but you also have a job, perhaps other children who need you too, and you need some downtime on occasion or you’ll go insane.  So it seems you can’t ever do enough for him.  The guilt is a killer.

4.  You live in a constant state of uncertainty of the future.  Yes, of course none of us knows our future.  But, if you have a typical child, you can be reasonably confident he will have friends, self-sufficiency, and love.  You know who to leave things to when you die.  But if you have a child with autism, you won’t know how to plan your estate.  Do you set up a special needs trust?  Do you leave it all now to the one typical child who can use it?  Because lifetime care for your autistic child will just drain it.  And what if he grows to do well and is able to care for himself?  Because you can’t yet guess what will be, every option is insufficient.  Uncertainty can affect every part of your life.  Should I settle here in this city or plan to relocate to a city with more intensive care for his needs?  Will he ever talk?  Will he ever be toilet trained?  You just won’t know until it happens or it doesn’t.  And you live with the fear that one day your then-elderly, vulnerable child will lie sick or dying without the comfort of someone who truly loves him.  Anxiety runneth over.

5. Spontaneity is a thing of the past.  You can’t just get up and go.  You have to determine whether there is an escape route from any new activity or location.  You have to pack things to distract him if he becomes upset.  You have to determine if foods he will eat will be present or if you will need to pack his meal.  If he isn’t potty trained, you will worry about where you can take him to change him that will afford you both some dignity.  Everything – everything – must be planned and considered.

6.  You begin to grow thicker skin.  Because people will and do stare.  They will stare in disgust, thinking he is simply badly behaved.  They will stare in curiosity, because that is the nature of man.  They will stare in horror or pity, because “there but for the grace of God go I”.  People stare.  And the thing that will come back to haunt you are memories of when you, also, made a judgment about another person in public.  Righteous indignation mixes with humility and all you want to do is get out of wherever you are as soon as possible.  But you can’t escape everyday life.

7.  You grow weary of everyone else’s opinion.  Because there are so many of them.  There are those who are certain they know how “this” happened.  There are those who are certain they know how to “fix” him.  There are those who don’t think you do enough.  There are those who believe you to be a saint.  There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not.  Opinions abound, but your patience may not.

8. But mostly it’s like love.  A love that you, if you are a parent, can probably imagine.  And a love that, if you don’t have a child born with a bulls-eye in a big, bad world, you can’t.  Unconditional doesn’t begin to cover it.  Limitless.  Earth-moving.  Making you question everything you know to be true about God and man.  And that kind of love will haunt you every moment of every day.  You can see it just behind the eyes of every special needs parent on the planet.  We are filled with a love we never could have predicted.  We are filled with fears we never could have imagined.  We are, quite simply, at capacity most every day.  And, yet, when inevitably called for, we find that capacity expands.  We aren’t better parents than you.  We aren’t saints.  And our children aren’t lucky to have us.  We are lucky to have them.  Because, despite all of these very challenging aspects to having an autistic child, none of us will walk away from this life without having grown – merely from having loved them.  Having become more than we thought we could be.

No, this – like many challenges one never asks for – isn’t easy.

But, I assure you, these children are worth it.  :)

*Later I decided to clarify this statement.  As it was, it may have implied to some that it was equal to the literal death of a child — which it is not.  I meant it more as another kind of death, similar to divorce, estrangement, foreclosure, prison, and other profoundly life-altering experiences for which one goes through the stages of grief.  

Things I Learned On I-75

 Disclaimer:  This is about my particular child and my own experiences raising a child with autism.  I am not attempting to represent the autism parenting community with this post.  As the saying goes, “It’s a spectrum.”  Yes, I already know that our situation is far better than some.  And, yes, I know that our situation is less encouraging than others.  Which is true about most things in life, I suppose. 

Last month, we took our little family of four on our first road trip together to visit family.  It’s an eight-hour drive, and –with a 3 and 4-year-old – we simply weren’t willing to do it any earlier.  But, we loaded up the car, offered a quick ceremonial dance and sacrificial offering to the temper tantrum gods, and headed out.  I expected the worst.  What I got, however, were revelations I didn’t expect to find on Interstate 75:

1.  My son can tolerate much more than I gave him credit for.  He sat, happy as the proverbial clam, and just…enjoyed the ride, man – enjoyed the ride.  If I turned and caught his eye or called his name, he’d just turn and smile…all the way to his eyes.  I swear I fell even deeper in love with my child during those hours on the road.  He is a likable little dude.  He handled museums, crowds, unfamiliar restaurants, my mother’s annoying Jack Russell terrier, hotel rooms, and a rather amusing and startling exploding bath in a Jacuzzi tub.  Knowing how many of our kids in the ASD community struggle in being overwhelmed with sensory issues, I recognize his tolerance of the world around him as one of his strengths.  And, for his sake, I’m so grateful for it.

2.  I think my NT daughter is acting out for attention.  Having viewed “Glass Children” soon after this trip, I worry even more for her.  I really look forward to the end of what I deem “The Great Sacrifice” — making the decision to live on one teacher’s salary while sending my husband back to school full-time.  When you’ve gotten used to a bigger house and cars that consistently run, it hurts more to downsize – especially when raising very young children.  Good times are coming again one day, but it’s not fun.  I dream of being able to decorate a room for just her.  All lavender and white with pops of sunny orange and pink  – like she loves.  I look forward to being able to enroll her in more activities, take her to a concert, or introduce her to the joys of Build a Bear.  Yes, she’ll be just fine simply being loved, but it will do this mama’s heart good to just take her to do something fun without second thoughts.  She needs our attention all the same as her brother.  I so want her to feel we did right by her.

3.  Although Callum certainly has sensory issues – the sensory seeking variety that will inevitably cause much social awkwardness – we are also terribly fortunate in the seemingly random distribution of autistic severity among spectrum kids.  Yeah, it’s autism.  But one person’s autism parenting reality is truly not another’s.  Our boy loves to cuddle.  He gives kisses if requested.  He has never bitten or hit us – though times can change, I know.  He loves to laugh.  And, though by no means even approaching his correct developmental age, he is curious what we are doing.  He usually comes if we call him and seeks us out when he hasn’t seen us for a few minutes.  And he successfully nonverbally communicates what he wants –that he wants to play tickle and get tossed around on the bed or that he wants juice, not milk.  Most of all, though he has never said, “I love you”, he makes joyful eye contact with us that says it just as clearly.  Yes, I want even more for him.  But I also know that in him we have an abundance of joy and rewarding interactions that parents of more severely affected children often miss out on.

4.  People are beginning to become hesitant in how to interact with my child.  I see the concern on the waitresses’ faces when he won’t talk back to them.  I see the dawning realization on the faces of other parents who take a second look now at his flapping and odd vocalizations.  I understand the awkwardness in family and friends who attempt to engage him and are ignored.

5.  Everyone needs time away – including the little ones.  They need a change of scenery too.  Bronwyn and Callum had a ball jumping all over the hotel bed, playing hide and seek in new spaces, and running up and down the long hallways and the staircase of the hotel.  Our daughter learned so much about time, distance, geography, and more.  Vacations aren’t just an indulgence.

6.  My husband is a great daddy.  Of course, I knew this already.  But time and proximity have a way of making you less aware of what you already know.  He is equally involved in everything.  He goes to doctor appointments, attends therapy, gets up in the middle of the night, checks school folders, and accepts our son for who he is.  No parent is perfect, but his children are very aware of how much their daddy loves them.  And I know I’m not in this journey alone.

7.  I’m wound so tight.  I used to love to plan day trips with friends, craft and decorate, and belt out classic rock and country tunes at the top of my lungs in the car. (Being a southern girl, I can sing every line of Bocephus’ greatest hits.)  Yet, prior to this trip, I hadn’t done so in years.  I am no longer capable of sleeping in.  And I can’t return to sleep if I wake up.  I become instantly alert and worries play like a broken record in my head.  Yep, I’m tense alright.  Clearly, I need more carefree fun and laughter.  Infrequent moments of hilarity affect me more now –precisely because they are so rare.  Yet ordering yourself to have fun is a little like trying to tickle yourself, isn’t it?

8.  As the song says, we have a long way to go and a short time to get there.  The only way to do it is to take it one mile at a time.  To look back at our progress , while keeping our eyes on the road.  To, while certainly using the road maps of those who have gone before us, remain aware of sudden detours and unexpected holdups.

And to sing as loudly and as enthusiastically as we are able while on the way.

If you enjoyed this post, you might also like:  “Why I Won’t Be Getting Mother of the Year: Layers of Understanding”