The 5 Don’ts of IEP Meetings

Whether a veteran or amateur special needs parent, we all get that “deer in the headlights” look as our child’s IEP meeting approaches. From the moment you walk through the door to your child’s IEP meeting, a tower of paperwork containing all of your child’s struggles, delays, and symptoms quietly awaits you. All of the fears that you have buried deep-down in the belly of your subconscious are suddenly summoned out into the open, to be confronted and discussed among a group of professional strangers. If that’s not a recipe for an emotional overload, I don’t know what is.

While there is no question that IEP meetings are emotionally heavy experiences, I’m here to tell you that it is possible for you to leave your child’s IEP meeting a little lighter than you walked in. And it’s really not that complicated. The best advice for mastering the fine art of negotiation is not found in written law or college textbooks, but rooted in the same logic taught in kindergarten. When in doubt, always go back to the basics.

Don’t Bring Your Baggage

For the IEP veterans, maybe you’ve got it all down by now, or maybe past experiences have left a bad taste in your mouth. If you’re a newbie, you’ve heard the horror stories and you’ve read the articles. I didn’t fully grasp the magnitude of these three little letters myself until I walked into my first IEP meeting.

Whether it’s your first or umpteenth IEP rodeo, the most fundamental aspect of success in the IEP process is your attitude. I once read an article offering IEP advice that suggested parents wear sunglasses to their child’s IEP meeting so that the other members of the IEP team couldn’t see them rolling their eyes. While this is obviously a joke, it represents an attitude that needs to be checked at the door.

You wouldn’t want your child’s IEP team to take out the frustrations of their previous IEP meeting on your child’s case. So why would you take your newfound apprehensions or deeply rooted disappointments out on your child’s current IEP team? Even if the same players from a past IEP are involved, it’s a new game and an even score. Walk into your child’s IEP meeting a blank slate, with an open mind and an equally open heart.

Don’t Be a Hero

You’ve done your research and you know your child’s needs better than anyone. Why would you ever need the assistance of a child advocate? And who’s got money for that?! These are good points, but they aren’t actually mutually exclusive to going to your child’s IEP meeting alone.

While you clearly know the particular needs of your child like the back of your hand, unless you’re an attorney, you don’t know the ins and outs of the IEP world. Heck, even if you are an attorney, unless you work within your child’s school district, chances are you still don’t have the advantage that a child advocate does. There is no question that there are relationships at play in the special education field, as there are in any line of work. When you are working with someone who knows these dynamics, it can only help you.

You may have the perfect speech planned, complete with solid facts and a tiny violin to accompany them, but with a child advocate representing you and your child, you probably won’t need to resort to your epic monologue. The reality is that sometimes–a lot of times–the simple recognition of small technicalities or report errors can ultimately get you further in negotiations than any crowd-pleasing performance. We know our children; we don’t know the red tape and we don’t want to. Some things are best left to the professionals. 

Even if you think you can’t afford a child advocate to represent your child, most child advocates–dare I say all the good ones–offer free consultations in which they will review your child’s case and offer you their advice and how they would approach your child’s case. It’s free, take it. Don’t be a hero.

Don’t Settle for Less

When it comes to your child’s education, aim high. Don’t think anything is off the table in an IEP meeting because, really, nothing is. The IEP team may tell you that what you’re hoping for is not feasible, but if you’re not comfortable with the one-size-fits-all menu being offered, pleasantly ask to speak to the manager. In other words, move up to the next level in your district’s authoritative ladder.

While mediation, a state complaint, or due process can seem like a lot of extra work and stress, it’s even more of a pain for your school district. Half the time, they are eager to rid themselves of you, so occasionally they’ll throw you a bone and accept their losses. Shoot for the moon and even if you don’t quite make it, you’ll land among the stars. 

Don’t Jump the Gun

Even if the terms reached at your child’s IEP meeting seem like a great fit for your child, there is no reason for you to feel pressure at the end of the IEP meeting to formally agree or sign the IEP plan. Most states that require a parent’s signature (of agreement, not of attendance) allow parents 30 days to sign and return their child’s IEP plan. States that do not require a parent signature on an IEP plan have designated waiting periods before a child’s IEP is implemented, giving parents ample opportunity to file a formal dispute. In either case, you should never feel obligated to sign or agree to an IEP plan at the IEP meeting.

The stress inevitably induced by an IEP meeting can make it difficult for you to discern between a premature desire to complete the process and a true satisfaction with the proposed terms of the IEP plan. However, as you know, agreeing to an IEP plan is not a decision to be made lightly. With the exception of a formal amendment, the specifications agreed upon in your child’s IEP meeting will define their educational experience over the next year.

It’s not a blowout furniture sale; there is no bonus prize offered for signing on the spot. There is also no shame in taking a few days to let it all sink in. Talk to your family and friends, get a good night’s sleep, and agree to the terms of your child’s IEP when you are clear-headed and confident in your decision.

Don’t Be a Jerk

People so often underestimate the “human factor” when it comes to the intricate nature of negotiation. You can prove valid points that support your agenda all day long, but a sincere smile can get you further than any fact can. People are people, and at the end of the day we all want to be treated with respect. Be someone who you would want to work with.

Remember that the faces on the other side of the table belong to real people. While they have budgets and quotas to adhere to, they are also educators and parents themselves, and they likely got into this line of work because they care about children. Until they prove you wrong, try to give them the benefit of the doubt.

Your child’s IEP team will be far more eager to accommodate your vision when you are pleasant, receptive, and respectful. The grace and dignity in your heart will prove far more valuable than the case studies and scholarly journals in your briefcase. Be confident and bold. Be your child’s fiercest advocate. Don’t settle and don’t act with haste. But above all this, be kind. You will be opening more than the lines of communication; you will be opening the door to your child’s brightest future.

School Creates a Beach for Autistic Students

A school in Devon, U.K., recently converted its unused outdoor space into a beach. While there’s no ocean, the courtyard has been filled in with 23 tons of beach sand and populated with pails, shovels, and beach balls. Like a giant sandbox, the space also includes a couple of seated child-size diggers. There’s also a trampoline.

Staff at the Longcause Community Special School in Plympton wanted to create a space for their students—who have autism or other complex learning challenges—to learn and play. Although they’re not located very far from the actual beach, few of their students ever go there, due to a variety of logistical and/or other issues. So, teachers and teaching assistants, along with some student and parent volunteers, worked over the summer holiday to ensure the sensory-friendly environment would be ready for the new school year.

The children are already enjoying it. Teacher Toby Clark told the Plymouth Herald that the sensory area isn’t just letting the kids get outside; it also presents many learning opportunities. This includes working with shapes and writing in the sand. Many children also find it soothing to walk in the sand or simply let it sift through their fingers.

He went on to say, “This is a really unique feature and we are really pleased with it…It is great to see the kids enjoying it too. It was a gamble and we are so thankful it has paid off.”


Asda Introduces ‘Helper’ Shopping List for Kids With Autism

Food shopping with kids in tow is typically not easy, and if those kids are prone to sensory overload or meltdowns, it’s all that much harder. Many supermarkets and grocery store chains have rolled out “quiet hours” in the last few years to help those with special needs shop in a less-challenging environment, but the hours don’t always coincide with times of day or days of the week that families can actually get out and shop.

Asda is one of those chains that trialed a “quiet hour,” but only in some of its stores. Now Asda is rolling out something new to all of its locations—Handy Little Helpers shopping lists.

The lists were designed by Jenny Barnett, an employee at Asda’s Middlesbrough store. Jenny’s five-year-old son, Charlie, has non-verbal autism, and his school uses symbols and pictures to help him communicate. This inspired Jenny to come up with grocery shopping lists that used symbols and pictures to keep children engaged while their parent or caretaker shopped with them.

The Middlesbrough location successfully trialed the Handy Little Helper lists, and Asda decided to stock them at all of their supercenters and superstores (more than 300 locations). Each store carries 10 of the reusable lists—which also feature a clip to secure them to the shopping cart—and they can be found at the Customer Service desk. Although they were originally designed for children with autism, anybody can use them.

As for Jenny, she’s absolutely thrilled that her idea will help other children like her son. “It’s such a nice feeling that I can walk into an Asda miles away from Middlesbrough and see another child benefitting from my idea—it’s going to help so many children, which is great.”

I’m Autistic, and This Is Why I Dread Haircuts

I’m an adult autistic person and haircuts are terrifying to me. I find it very frustrating, to be honest, but today—September 5, 2017—I just got my haircut. Staff support and friends were there to help and even though I was terrified enough that I just sat in the chair with eyes wide-open in terror pretty much the entire time, I was able to get through it.

The minute I walked into the salon, I was overwhelmed by the smells of perfumes and makeup, and the sensation of knowing I was there for a purpose that would automatically trigger my anxiety. I had my brave face on and I was ready for the task until the moment I stood in front of the desk and the man asked, “May I help you?” I froze.

Thankfully, my staff realized my feelings and initiated a conversation. I explained afterwards, once I found my voice, that I had anxiety. He seemed pretty nice and led me to a chair to get my hair washed (once things were figured out with what I wanted to get done). I have the unlucky/lucky genetic trait of curly/wavy hair, which is rather interesting to manage.

I was trying to find words, but the moment my glasses came off when he was washing my hair, I started to panic again and then he started asking questions. Thankfully, staff again helped, and things again went smoothly. Really, all I need is that extra hand when walking into the scary unknown and for reassurance. The rest I can do until it become scary again. Then I reach out and then I relax again and then I panic and then I relax again and then I panic. That was pretty much the entire haircut.

But outwardly? I don’t think anyone knew how terrified I was. And honestly, I’m okay with this. They don’t have to know how terrified I am; they just have to offer their hand and be there.

They were also able to help me by having me focus on something else and talking to me to help me think of other things. Even helping me answer the questions that made me panic. It frustrates me that this makes me panic so much because I’ve overcome so many things. I keep wondering what is the cause.

Maybe it’s because I can’t control the situation. Maybe it’s because I don’t know anything about the social norms. Maybe it’s because I don’t understand looks. I don’t know. Whatever it is, I get extremely uneasy once I’m in the chair and I freeze the entire time. But my staff and friends who came with me were able to help me. And this was one of the few times in my life I had a successful haircut without crying afterwards. I even got an undercut.

Afterwards, I rewarded myself with a cherry chocolate Blizzard from Dairy Queen and, to be honest, I went shopping  as well and I lucked onto an awesome sale that I don’t regret. I’m still calming down from anxiety, but I am so thankful that I had people who understood me and were there with me.

I still don’t understand the concept of hair, and why hairstyles are so complex. I mean, I like being able to do things with my hair. But I just hate how people judge you for it. If I put my hair up in pigtails, all of a sudden I look so young that I get hit on by people way younger than me. Not only does that make things awkward for me—because I still don’t really understand when I’m being flirted with unless they’re being very very obvious—but usually I’m not interested, which makes things even more awkward.

Anyway, I got a lot of compliments when I posted my selfie on Facebook. I got a lot of smiley faces and congratulations, but to be honest, I was way more excited about the fact that I actually succeeded with not  crying after the haircut. I know I shouldn’t reward myself with food (my therapist and I have been working on that), but I’m not yet at that stage. And she said it’s okay to accept that I’m not at that stage yet, and to treat myself once in awhile after a really bad day. Or to reward myself after doing something really hard.

So I decided that instead of doing it after negative things, I’m only going to reward myself for doing really tough things. Because I kept falling into the bad pattern of treating myself after bad days again and again and again. And she was really proud of me for making that healthy choice. And you know what? I’m really proud of me, too. Plus, I have two new adorable Pusheen plushies that I can cuddle with and calm down with in the comfort of my own home and it’s all because I got a brand-new haircut.

I Regret Ever Asking for Help

I was at such a low point on the day I called for help. I had struggled for so long and was getting nowhere and my kids were causing me so much concern. Life at home was bad and I knew if I didn’t do something, life would collapse under me. Autism is not pretty and I could not face any of my kids having another meltdown. I guess you could say I had my own meltdown, in a way.

I called for help.

I called the school first. I regret that.

My kids are just so typical of millions of autistic kids: They hold it together at school and I get the full brunt of everything at home. I had been to Parents Nights and heard all about how well-behaved they were. I always left wondering if they had the right child, as at home I never hear a gentle voice or a kind word.

I called the school for help but they turned on me. It was not my kids, according to them. No—it was my parenting.

Now, I swear they ignore my calls and see me as some sort of failure or fraud, I am not sure which. I get no support from there.

Then I called social services. I regret that, too.

Oh, they did come and see me. In fact, I can’t get rid of them now! They scrutinized me and had me jump through hoops for everything. Seriously, they wanted to know what job my grandparents did and at what age I first rode a bike, just to find out if there was any way I could get a break sometime! I had to go to this course, do this thing, look into this place and so forth, just to prove myself to them. It mentally destroyed me. I have managed to get a little bit of support now, but at what cost to my mental health and my time? The fight for the smallest of things consumed me and my family to the point we dreaded every home visit.

I called therapists. Some of those I regret ever setting eyes on.

You must think I am so negative and ungrateful, but would you enjoy a stranger coming to your house and criticizing everything from your decor to your lifestyle, and everything in between? I was hoping my kids would get therapy and support, but instead I found myself talking to more and more people and my kids seeing fewer and fewer professionals. Whether deliberate or not, I always came away feeling like I was a failure and never good enough. 

I called family. That was an utter waste of time, too. It is best that I say nothing more about that.

I thought I was in crisis when I called for help. I was exhausted from too many meltdowns, too little sleep and fighting the system alone.

Now I am still all of the above, but I am also depressed, demoralized, defenseless and full of regret.

My marriage is on the verge of collapse and my kids are struggling more than they were when I first called for help.

Asking for help put me through hell, not because I was unwilling to work with people or accept help, but because all that happened was I got blamed and bullied like my children’s autism was all my fault. 

This is just my story. I know many people who asked for help and who have gained help and are in a better place now. I guess it all depends on whether school are supportive, whether social services believes you and works with you, and whether you find some great therapists.

Maybe I was “unlucky.” I hope so.

I did learn a few things, though. I learned that schools can pretend all is well when it isn’t. I learned that I must brush up on my great-great-grandmother’s second cousin’s health records, as apparently these things are necessary just to get help for my autistic kids. And I learned that even being desperate for help does not mean people will listen to you.

I am now on medication for depression and anxiety. My kids are still screaming and destroying my house, and one is self-harming. I am socially isolated and utterly exhausted. Nothing has changed except I regret asking for help.

Lucas’ Letters: Helping Turn Strangers Into Friends

Lucas’ story is a familiar one for many parents of autistic children. He was diagnosed with autism at age 3, and professionals told his parents that he would never speak. However, instead of giving up on Lucas, they sought out alternate ways to communicate with him, and he started talking when he was 7-years-old.

Lucas is now 10, and his favorite show is Splash’N Boots, a Canadian kids program. In December 2016, Splash’N Boots posted the story of Morgan, another boy with autism, on their Facebook page. Morgan was sad that he was never “invited to things,” so his mother had asked for people to send him Christmas cards. Lucas’ mom showed him the post and he told her that, since he never got “invited to things either,” he wanted to be Morgan’s friend. Thus, Lucas’ Letters, a pen pal club, was born.

Lucas has made many new friends and learned about many new places through Lucas’ Letters. With the help of Splash’N Boots, his pen pal program is expanding across Canada, and beyond.

Any child who wishes to participate can join, regardless of their ability. Based on their answers to a set of questions, they are “Pen Pal Matched” with a pen pal from a different town or city. When they sign up, they are mailed a package containing writing paper, pens and some helpful ideas just in case they need help figuring out what to write in their letters.

As Splash’N Boots explains: “The simple act of writing letters provides children with the opportunity to make new friends, build communication skills, develop empathy, and learn about the world in which they live.” The pen pal program is an invaluable gift for any child, but especially one who has difficulty forming friendships.

To sign your child up for Lucas’ Letters, click here.



Autism Father and Filmmaker: An Interview with John Asher

No one can tell you the story of “A Boy Called Po” like John Asher can. While he’s the film’s director, producer, and editor, John also knows firsthand the complex dynamics of parenting an autistic child. Considering that he is the proud father of an autistic son, Evan, who is now 14, it is not surprising that John’s motivations behind the film run deeper than profit and box office success.

“I just wanted my movie to be authentic. I wanted the community to embrace this movie and put their stamp of approval on it. That’s what I care about the most.… I didn’t make the movie to make money. I made the movie to educate people more than anything. So, really, for me, I just want people to see it, and I don’t care how they see it. I just want them to see it.”

Hope Ahead

When I shared that I, too, have an autistic son, the famous director instantly stepped out from behind the camera and put on his Dad hat. “One of the things that we were fortunate about is that Evan was diagnosed when he was about two-and-a-half or three years old. Early diagnosis is key. I mean, look, there was a time when he was three years old, and I was like, I don’t know if he’s ever going to live by himself. I don’t know if he is going to get taken advantage of. And yet last week, Wednesday, was his first day of high school. No shadow, all by himself. And he’s in special ed classes. But he’s also into mainstream classes. He’s unbelievable. And he’s going to get a frickin’ driver’s license.”

John exuded pride for his son, but his tone remained solemn. He wasn’t gloating; he was comforting me. He was remembering that time of limbo. “I just want you to know—I’m telling you—you really have a lot to look forward to.” I was grateful for the handful of hope that he passed on to me.

Digesting a Diagnosis

Since I’d only recently received my son’s official diagnosis, I asked John about his introduction to autism. “I remember when my son was diagnosed. It was really interesting how it happened. We went to see a doctor at UCLA. He was just watching Evan in a room. He gave him a bunch of like miniature hazard cones, the little yellow cones, and Evan started stacking them up and making sure they were perfectly lined up. He put his eye up to the table and they were all actually perfectly spaced apart. I remember Jenny [John’s wife] saying, ‘Does my son have autism?’ and the doctor looked at her and said, ‘What do you think?’ She just burst into tears.”

While I firmly believe that the saying, “If you’ve met one person with autism, you’ve met one person with autism,” is true, I’m not so sure I can say the same about the parents of autistic children. I may not know John (or Jenny) personally, but I do know how they felt in that moment. I’ve seen my share of stacking and eye-tracking.

My heart went out to them both as I listened. In the movie, seeing Po’s father walk the same path that I clumsily navigate on a daily basis made me feel less alone as a special needs parent. The director had already succeeded in comforting me as a viewer. Now, in real life, he had done the same service for me as a parent.

Coping with Conflict

My interview questions now tossed aside, I confessed the challenges I’ve been facing as a newbie special needs mom. True to character, I began to overshare, telling John how autism affects so much more than our children—it affects our relationships, our marriages, our jobs, everything.

He knew. Of course, he knew. “A Boy Called Po” confronts practically every obstacle that I have faced as the mother of an autistic child. I wanted to know what personal aspects of fathering an autistic son he incorporated into his film.

John told me about a specific scene in which Christopher Gorham’s character, David, just loses it. I knew the scene; how could I forget it? I faced my own demons as I watched it; half of me wanting to protect Po, the other half filled with compassion and understanding for David and the frustration he felt. I asked John if he believes that the challenges are different for special needs fathers than they are for special needs mothers, and if so, how.

Clearly cognizant of the question’s controversial undertone, John continued to keep it real. “My opinion is that, sometimes, men feel the need to appear as if everything is okay. That it’s alright. Our job is to make our wives feel like, ‘look everything’s fine,’ right? I may have done that to a fault because I think that Jenny got frustrated, and she was like, you know, how can you say that everything is alright? I was positive, and look, everything is fine, but it’s bad. I mean, the divorce rate for autism parents is what, eighty-five percent, ninety percent?”

I replied that those statistics did not surprise me one bit and we both laughed. Looking back now, I’m not sure I can explain what exactly was funny in that moment.

The Marriage Toll

I confessed to John that my marriage was no stranger to conflicting coping mechanisms. If it weren’t for the countless messages I receive from fellow special needs moms who feel the exact same way, I’m not sure I’d be sharing about it here. But I know I’m not alone. So many women have shared with me that they feel as though their partners just don’t get it. They don’t see.

John quickly jumped in to clarify. “We do see it. We do see it. But look, a man would never tell you he is having a heart attack. He would sooner go in the bathroom and die quietly. We wouldn’t tell you, because we’re not designed that way.”

Of course, John and I both acknowledged that not all men operate this way. Yet, the fact remains that many marriages suffer as one parent remains positive, walking ahead with a spring in their step, while the other, lugging the heavy baggage of both their realities, struggles to keep up. Or so I’ve heard.

John stayed true to form, and continued to offer me his genuine support. “Can I give you one piece of advice? Communicate. When you go to sleep at night, it’s okay to say you’re scared. I wish I had said that to her more. I wish I admitted that I was scared, because there’s comfort in the other person. I just kept saying, everything’s going to be fine.”

Going It Alone

Perhaps it’s no coincidence that in “A Boy Called Po,” David also struggles to admit his powerlessness as the father of an autistic son. The film confronts the uniquely heavy burden that a special needs parent inherits when they lose their partner. Whether it is due to a loss like in the film, or the result of a divorce, I asked John how one person attempts to carry this weight alone.

“You know, I think my thing is to not lose hope. You think the world is crumbling around you, and you just don’t realize that you have this beautiful gift right in front of you, which is your child. And it’s not to give up on your child. Not to be scared.”

A Father First

Autism parent to autism parent, John talked with me far longer than I could have expected. This time the guy behind the camera is also the guy at occupational therapy. He knows the appointments and insurance policies. He knows the worrying and denial. He knows the fierce struggle and even fiercer bond. He might even know a little bit about your marriage.

We covered it all, and we were left with the same question that every conversation about autism ends with. What do we do about it? We already know we can’t change autism. But we can show people what it really looks like.

I asked John, as a father, how he hopes “A Boy Called Po” can effect change.

“I hope that the autism community watches this film so that they can show it to their not autistic or neurotypical friends and say, ‘If you want to come into my life, look at this movie.’ Because that’s really what it’s designed to do. The movie is entertaining. It’s magical. It makes you laugh; it makes you cry. That’s the design of it.

The design is toward the typical families. So that they can watch this movie and say, ‘Oh, that’s what my friend is going through!’ They look at us with these blank faces. They’re like, ‘Oh, that must be so hard. So sorry for you.’ They don’t know what we are going through. Take this film and show it to your friends. If you have autism in your life, show this film to your friends and they will understand what you are going through.”


“A Boy Called Po” can be seen at select theaters near you, for a limited time. It is also available on iTunes.

For more on “A Boy Called Po,” visit Facebook or Twitter.

*A big thank you to John Asher,, and Taylor Shannon of Prodigy Public Relations!

‘A Boy Called Po’: An Honest Look at Autism

While, undoubtedly, there’s bound to be a select few moviegoers who storm out of the latest Marvel movie, enraged for one reason or another, it’s a pretty safe bet that the vast majority of viewers will leave the theater either entertained or not entertained. But when one creates art that imitates real life, they tread a finer line. Films about disability and illness must walk this tightrope like no other genre.

If you’ve been affected by disability or illness in your lifetime, and chances are you have, then watching a film that strikes a chord with your past or present situation can be difficult to watch. This reaction is paradoxical: If a film resonates with you, it can be emotionally challenging and painfully cathartic. At times, we instinctively look away because the image on the screen aligns too accurately with the images imprinted in our memories. Similarly, if the film does not resonate, or worse, fails to capture its subject’s authentic struggle, it is equally painful to watch. It feels offensive and insulting to one’s core. In other words, it can really piss you off.

I can certainly relate to both sides of this dichotomy. Growing up, my mother was an alcoholic. While she now has 18 years of sobriety, I still find certain films about alcoholism extremely challenging to watch. Whether a film completely misses the mark or hits too close to home, the inclination to turn away is tantamount. I cannot endure watching the personal hardships of my childhood made light of in Sandra Bullock’s “28 Days.” It’s infuriating.

But on the other side of this same coin, I always flinch and look away from certain scenes in “When a Man Loves a Woman.” It’s too close, too familiar. It stays with me afterward, longer than other movies or books. It digs up a shovel full of memories and emotions that I swear I buried years ago and dumps them on my doorstep. But it feels good. It connects me. Like pouring salt on an open wound, it stings, but also cleanses and promotes healing.

Watching films that portray our personal situations and histories can be difficult, but when they’re real and raw and honest and just get what we have been through, it’s worth it. They connect us, not only to ourselves and our journeys, but to everyone else in this world who has gone through it, too. They even connect us with those who have not traversed our unique paths. When we share a film with others that authentically captures the essence of our individual struggle, we begin to cultivate understanding, and somewhere deep beneath the surface of our collective consciousness tiny roots of acceptance begin to sprout and multiply. It’s quite powerful.

So when I was asked to screen “A Boy Called Po,” a film about autism directed, produced, and edited by John Asher, I knew the fine line I would be walking if I accepted. My son is autistic. While he was diagnosed a little over six months ago, I’ve been hiking uphill with autism on my shoulders for three-and-a-half years now. I knew if I watched the film I would cringe. I just didn’t know if it would be because it failed to do justice to my family’s personal journey, or if it would be because it hit too close to home.

Films I had previously seen about autism didn’t necessarily enrage me. But at the same time, “Rain Man,” “The Accountant” and, dare I say, even “Temple Grandin,” left me entertained but still wondering exactly where my personal reality was being portrayed on the silver screen. My life is filled with autism, but trust me, there is no card counting in Vegas and no secret accounting/crime-fighting syndication. Not even your classic farm innovation. It’s just my family, and autism. Is my family’s personal autistic reality not juicy enough for Hollywood? We are so misunderstood; so desperate for awareness and acceptance. Why is no one telling our story?

So I agreed to watch “A Boy Called Po,” and yes, at moments, it was difficult for me.

I winced each time the film’s autistic protagonist ,“Po,” played by Julian Feder, self-regulated or stimmed in a familiar way. I leaned forward, teeth-clenched and alert, anytime he was in danger or in pain. I chuckled aloud to myself and enjoyed a familiar eye-roll each time Po demanded “mac and cheese, please.” And each and every time Po asked his father, “Where’s Mommy,” I instinctively peered upward, attempting to deprive the rising tide of tears within my eyes the validation of an expectant cheek.

I hung my head in shame when Po’s Father, David, played by Christopher Gorham, lost his composure or verged on a breakdown. Every time he felt lost, or judged, or completely and utterly defeated, so did I. I was right there with him. Because I am there, every single day. So yeah, you could say that it hit home.

It hit home in every single aspect of my current reality as the mother of an autistic child. The constant questioning: Trust my gut or trust every professional? Socialize at the risk of bullying or shelter with the risk of solitude? Challenge by mainstreaming or support with peer acceptance?

Watching your financial stability sift like sand through your fingers, while also managing to simultaneously fail at parenting. Becoming accustomed to the absurdity of insurance policies and the infinite maze of red tape we are forced to blindly navigate. Facing mortality a little earlier than anyone should have to. Feeling alone in it. Being alone in it. It was all there in front of me, and while there were scenes from which I instinctively turned away, my gaze eagerly returned each time. As Emily Dickinson once wrote, “I like a look of agony, because I know it’s true.” I know this film speaks truth; it is drenched in my truth.

As the credits rolled, I let out a deep sigh and sat quietly for a while, a true anomaly for a neurotic like myself. What was I to do with all these feelings on my doorstep? Well, I could do what I always do. I could write about it. I could tell you about it.

Maybe you could tell your family and friends who don’t quite “get it,” like you wish they could. Maybe I could tell the other moms at my son’s preschool about the film. Maybe they’ll watch it and sit quietly afterward, pondering what to do with the feelings on their doorsteps. Maybe they’ll talk with their children who are in my son’s class. Maybe my family and friends will finally have more to go off of than “Rain Man” and “The Accountant” when trying to understand my son’s disability.

Maybe we can advocate for our children and one another by sending a message to mainstream media that we are no longer a minority, and that our lives are in no way lacking in the substance department. We are everywhere. We just don’t always raise our hands. They are very full, and carrying precious cargo. But the kind of acceptance we want, we can’t just ask for. We must spread it like wildfire. We can begin to communicate our daily challenges and nightly circling thoughts with one simple sentence. “You should really see ‘A Boy Called Po.’”

Sometimes we are so immersed in our own struggle, knee-deep in appointments and sleep deprivation, that we do not have the strength to advocate. We are not storytellers; we are exhausted parents. But director John Asher happens to be both. He has done our children a great service by making this film, and we can pay it forward quite easily.

Besides all of you, I plan on telling at least one fellow special needs mom, one family member, and one neurotypical friend or parent about “A Boy Called Po.” My hope is that you will do the same. If just one person looks upon my son with increased understanding because of it, well, then that’s the best payoff anyone’s had since Tom Cruise in “Rain Man,” and it’s about time.


“A Boy Called Po” can be seen at select theaters near you beginning September 1, and for a limited time. For those of you that can’t make it to the movies, “A Boy Called Po” is available on iTunes.


For more on “A Boy Called Po,” visit:

Facebook: A Boy Called Po

Twitter: A Boy Called Po

*I’d like to thank Taylor Shannon of Prodigy Public Relations and John Asher, for dumping this shovelful of truth on my doorstep. Finally, I’d like to thank for dumping it on yours!

Still the One

As with all of my son’s musical performances, I had arrived an hour and half early so I could be in the front row. Some of this is so I don’t get stuck behind someone with an extraordinarily large head and can actually see my son, but, mostly it is so my son can see me.

The music begins, and my teenage son walks across the stage. I swear I can feel my heart expand. He finds his mark, turns towards his fellow performer and engages in pretend conversation. I smile proudly, recognizing the irony of him easily acting out a conversation on stage while actually being part of one offstage is difficult for him. As the scene unfolds and the music begins, he starts singing and comes to the front of the stage, directly in front of me. My smile gets bigger.

Still singing in that beautiful tenor voice of his, he doesn’t miss a beat as he searches the front row. He knows that’s where he will find me, and sure enough, he does. He sees me. His eyes lock with mine and he tries to fight back the smile so as to not break character.

He sees me. Whether I’m to the left of the stage or the right, whether I’m across the kitchen table or beside him, whether I’m in the back of the classroom or the front, he sees me because I am the one who is always there.

Over the years, the way my son sees me has changed in many ways.

As a sweet, happy infant, he saw me as the one who provided the milk, picked him up when he was sad and sang out-of-key (before he knew I was out of key and cared).

As a toddler, with severe sensory sensitivities, he saw me as the one who calmed him after haircuts, thunderstorms and close encounters with any type of winged insect, and did whatever I could to “make it better.”

As a little boy, whose need for routine and sameness made the world feel calmer, he saw me as the one who found the right shirt, the right shoes, the right mac and cheese, and the right waffles, no matter how many stores we had to enter to find the “right” whatever.

As an anxious middle schooler, he saw me as the one who nagged him and pushed him to do things and try things that he did not feel comfortable doing because I knew stepping outside his comfort zone would help him be successful.

As a typical high schooler, he now sees me as the one who knows nothing about Pokémon Go and Minecraft, the one who knows nothing about singing in key (and now cares) and the one he tells with great regularity, “You nothing about me.” But, yet, I’m still the one he searches for in a sea of faces in a high school auditorium.

I’m still the one.

Of course, it makes sense that time has changed how my son sees me because time has changed what he is looking for from me. My son may no longer see me as the bug hero, the waffle getter or the right shirt finder because his needs, his wants, his fears, and his dreams have changed.

How he sees me may be different, but what matters most is that he still looks for me and knows I’m the one who will be there. Regardless of how badly I sing, how annoying I am and how much I push and nag, he will always see me because I have always been, and will always be, the one who sees him.

When Your Child’s Obsession Consumes the Whole Family

My son love lifts (elevators, to those of you in the U.S.). He has for many years now. He watches lift doors open and close on YouTube, he knows every shop in our town and beyond that has a lift, and when he has hospital appointments we have to visit every lift in the entire hospital.

It is consuming!

It rules his life. He is drawn to lifts like metal is drawn to a magnet. He cannot simply walk on by or use it for the functional purpose of just moving up or down one floor. No! He has to press every level, every time. He has to get out at different floors and watch the same doors open and close from every possible angle. He has to flap and dance and giggle at people getting in, people getting out and the repetitive announcements telling you which floor you are on. He has to touch every wall, put his ear to the back and have a fit of the giggles at me preventing him from pressing the emergency alarm…at every single level!

It is consuming!

I can’t just go to the shop to pick up milk or a loaf of bread because my local supermarket happens to have a lift in the car park and two inside the shop. He either cannot come with me (which involves a complete meltdown because, despite having limited understanding, he seems to sense when I am going to somewhere with a lift) or he comes with me, and I risk leaving after having only made it to the lift. Moving him on is almost impossible. It involves him self-harming and screaming, and me physically dragging him and sometimes having to call for backup. It is not pretty.

It is consuming.

He loses all track of time in a lift. It is like an entire world to him. He loves the noise, the echo, the shiny walls, the confined space, the predictability, the voice that comes out at just the right time, the buttons he can press and the feeling of it moving. It is exciting. It is his “happy place” and he would stay there all day, every day. But I can’t let him.

But I film him so he can watch himself back. I use “first and then” and desperately bribe him to come away. I use timers and warnings. I use visuals and talkers. I could send God himself to rescue him but Isaac still would not care.

He is consumed by his obsession and nothing will move him on.

Isaac is loved deeply. We allow him time at his obsession even though his sister would rather stick pins in herself than be at a lift. But what do you do when every family outing, every waking minute on YouTube and every Google search (for images, as he has no ability to read or write) are all consumed with your child’s obsession?

There has to be a balance. Isaac has no understanding of why he cannot be utterly saturated in his own obsession. He has no awareness of the needs of others or that shops even have closing times. He craves the sensory feedback of lifts like you and I crave water and food. To deny him that would be to destroy him.

So, what do you do when you are consumed by the needs and wants of one member of the family?

It is hard to get the balance right. We have tried the splitting-up idea, where one adult has the thrilling day of lifts (yes, I am being sarcastic!) and the other entertains his sister. That eventually causes resentment. We have tried days without lifts (that was that awful screaming you heard ringing in your ear thousands of miles from me). We have tried compromising. (Have you ever tried to reason with a severely autistic, non-verbal 8-year-old? It isn’t fun!) We have even tried the seesaw approach of you get a lift and we all get something we want too. That went down like a lead balloon.

There is no “little bit” when it comes to an autism obsession. There are no “forget about it” days.

It consumes them, so it consumes us.

We are trying to teach our son patience, self-control and limitations. Meanwhile, he has other ideas…

By the way, I spent so long at a lift today that I typed most of this up while watching him. His obsession really has consumed me now, too…I am even writing about it!

That is what happens when your child’s obsession consumes the whole family.