I’m Thankful for the Good Days

Pulling into Leo’s school today for morning dropoff, I cautiously peered into my rearview mirror, surveying Leo’s expression. Last week was one of those exceedingly challenging ones for my boy, across all environments: school, home, therapy…

Relief swept over me this past weekend as I’d noticed a transformation back to the joyful boy that I know. I was hoping beyond all measure that this positive swing would transfer to school as well.

Leo appeared calm as I parked, emitting some familiar “coos,” which are generally a sign he is at ease with the situation. His teacher approached our car while I unbuckled him from his seat.

“Come on, baby,” I coaxed, guiding Leo outside, and placing his bookbag onto his shoulders.

“Leo, you’re wearing your Dory shirt!” His teacher sweetly commented.

He smiled, taking her hand and allowing me a kiss before they walked away. I sat in the car for a few moments, watching as they approached the building, stopping along the way so they could work on his greetings.

With prompting, he waved “hi” to another teacher…a classmate. He seemed okay, as I looked on, even after they were out of sight…and holding my breath while I drove away…

When the overwhelmingly challenging days occur for my boy, and string together for any length of time, it feels as if I’m in a constant state of trying to put out the fires…or at the very least contain them.

The question of “why” he’s having such a hard time is not always crystal clear. In fact, there is almost always some level of mystery, or uncertainty surrounding what is causing the new behaviors, added challenges, etc…

I arrived at his school a little earlier than usual this afternoon, eagerly awaiting dismissal.

Leo exited the building holding his teacher’s hand, just as he had when I left him this morning. And as I neared him, I knelt down, kissing his cheek as I had this morning…

“He had a good day.” His teacher spoke, soft yet reassuringly, perhaps aware of my brewing anxiety.

And I exhaled fully for what felt like the first time all day, grateful for this “good day” for my boy, grateful for a teacher who works tirelessly to help him through the difficult days.

There will be more of those to come, of course…

But for tonight, I’m going to (try) to let the worry go.

Because today… Today was a good day.

How I See Myself in You

For seven years, I have watched you grow and your personality unfold. Before you arrived, I wondered what life with you would be like. After you arrived, I knew that life was different but didn’t realise how much I would learn from you. Through you, I have learnt what it means to be a mother, understood more about the person I want to be, and discovered new things about who I am.

I love your curiosity and independence, which were both evident from an early age. When faced with a challenge, you will always find a way to get around it. At 2, you used the filing box to help you reach the desktop and use the computer. At 4, you took Dad’s photo on his phone and tried to use it to access the Xbox using the facial recognition login. Recently, you almost worked out the iPad pin code after you set Dad a quiz about everything—from his birthday and favourite colour to his parents’ birth dates.

Like you, I enjoy the challenge of working things out and finding answers. Puzzle solving is a big part of my job. There is nothing more exciting than a problem to be solved, even if it does take a while. When faced with a challenge I can become wrapped up in it for hours and days, oblivious to the world around me until I have completed the task. This is so similar to the way you can get lost in a world of your own and spend hours working on your Lego masterpieces.

Life is the biggest puzzle facing us both, as we attempt to navigate through the twists and turns of what can often be a confusing world.

School turned out to be a bit of a surprise for us all. The demands of lessons and lunchtimes were overwhelming, and you often clashed with your classmates. As your refusal to participate in lessons and emotional outbursts increased, we realised that you couldn’t cope. Your anxiety was at an all-time high, and our hearts broke to see you struggle so much when we didn’t know how to help you.

While you struggled at school, I struggled at work. I have often been called out for being challenging, abrasive, inflexible, or inconsiderate of others. The reason is that I also struggle when there is uncertainty, an unexpected change, or when everyone has a different view about how to get things done. I don’t mean to be difficult—I just want to make sure that I get the job done on time to a high standard, and it sometimes takes me a while to get my head around different points of view. After years of conflict, and many unsuccessful attempts to change, my own anxiety has rocketed as I struggle to be the person they wanted me to be and take the next step in my career.

Things have started to change for us, as you have found the support you need at school and I am learning how to bring about the changes I need at work.

Even with these changes, life can be pretty exhausting at times. It is not always easy dealing with things that are beyond your control or don’t make sense. I have learnt to tell when things are getting too much for you—your voice becomes louder, your actions and language become repetitive and restricted, and your mood becomes more volatile. Signs that you could be headed for a meltdown and need some downtime, distraction, or support to allow you the time and space to deal with things before they get too much to cope with.

I understand how you feel. I often have moments when it all gets too much for me, too. Times when I need to work hard to keep things together, struggle to cope with even the simplest of demands, and need to escape. In supporting you, I have learnt how to identify my own triggers and manage my own stress levels without feeling guilty about the need to take some time out for me.

Together we are learning about self-regulation, and how to keep ourselves on a more even keel.

At night, I love to watch you sleeping, tightly wrapped up in your duvet cocoon. I think about the joy that you bring into my world. How you love to share your knowledge of facts with anyone who will listen, and enjoy using big words and quirky phrases you have heard. How you see life from a different perspective to most people and take great happiness from simple pleasures. How you always say exactly what you are thinking and don’t worry about what other people think.  How loyal you are to the people you have connected with, and how much you enjoy making people laugh.

As I watch you, I think about your spirit and approach to life and how similar it is to my own. We are different. We are the same. Reflections of each other, moving through life along intertwined paths.

Through watching and understanding you, I have discovered that I, too, have autism. In you, I see me and a future where we both can find our place in the world. A world where our differences are celebrated and our struggles are understood.

The Day I Lost My Autistic Child at the Mall

What sort of mother loses her own child?

What sort of mother loses her non-verbal autistic child in a shopping center on a busy Saturday afternoon?

This mother.

It was all a big misunderstanding. I had to take my other child to the bathroom, so I told the other adult with me where I was going and where I would meet him. He either never heard me or never understood, and I never thought to check as I had to get my other child to the bathroom quickly. In hindsight, I should have checked.

I dealt with the other child and made my way to the agreed meet-up place. Before we even got there, I could tell something wasn’t right. I heard screaming and crying and there were crowds at the doorway of the store I was going to. Mother’s intuition hit me right there. I had that horrible feeling in the pit of my stomach that somehow this was about my son.

I know my son’s scream and those were HIS screams I was hearing. He had someone with him though, right? Except the closer to the noise I got, the better I could see my child lashing out and attacking — through sheer panic — the very people who were clearly trying to help him. I ran over. I can’t run very fast, but adrenaline carried me to my baby.

The noise of the adults shouting, firing off questions and more questions; the piercing of my son’s screams; the blasting of the shop’s music – it was all too much, even for me, let alone my terrified little boy. I grabbed him from the security guard and held him tight. He sobbed and sobbed, more than I had ever known him do before in his life.

“Yes, he’s mine.”

“No, I was not aware he was on his own.”

“Yes, of course I am sorry he was hitting you.”

I fell to my knees with one of my children standing beside me, wondering what this was all about, and the other in a heap on my knee still yelling and crying for all he was worth.

The tears welled up in my eyes and I could not control them falling down my face.

“He’s autistic,” I sniffled softly. “He can’t speak.”

The tuts and stares were so powerful they were like nails piercing right through me.

Finally, the crowd dissipated and only the security guard remained. By this time, the other adult appeared and the reality of what had happened finally hit me. My non-verbal 9-year-old with severe autism had been alone and lost in a busy shopping mall on a busy Saturday afternoon.

It doesn’t matter who was to “blame.” The fact was that it happened.

You can judge me all you like, but every day there are autistic children getting lost because they wander or get attracted to sensory stimuli and they have little or no understanding of danger. My son was found because he was watching the automatic doors open and close, and he was screaming. When the security guard noticed he was alone, he physically stopped him.

My son was not crying because he realized he was lost or because he missed me. He has no concept of what lost even means.

I have to live with what happened today. I have to find a way to keep him safe even when there are other adults with me. It should never have happened, but it did.

Please don’t be too quick to judge me.

Please be aware that children with autism are especially vulnerable. Be aware that not every child can even tell you their name or where they live. Be aware that, in seconds, a child can wander.

Be aware than even good parents like me can lose their autistic child, and we have to live with that for the rest of our lives. No judgment from anyone else will be greater than the guilt I have to live with now.

My story ended well. Not every story like mine will.

Losing your non-verbal autistic child: there is nothing more terrifying in the whole wide world.

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.

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.

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, AutismAwareness.com, 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 AutismAwareness.com for dumping it on yours!

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.

What Not to Say to a Special Needs Parent

Being a mother to a child with autism means that I’m often on the receiving end of judgmental comments and stares, unwanted advice, and somewhat well-meaning—at least I hope—comments from friends and strangers alike. It’s what I hate most about autism.

Sadly, every day, special needs families that are already overburdened have to deal with this added stress. When my son was a baby, people often offered all kinds of ideas about how I could help soothe him since he cried a lot. Other moms would mention how odd it was that he needed to be swaddled at 10 months, or that he didn’t crawl for a really long time. The older he got, the ruder and more intrusive the comments got.

Strangers would come up to me and say things that would bring me to tears or, worse yet, say nothing. None of these things helped me. And, while for the most part people don’t mean to be hurtful, they sometimes are without even knowing it.

Here are just a few of the things people should never say to a special needs parent:

1. Your son doesn’t look autistic.

Autism is a spectrum, which means not all cases are the same. The adage goes, if you know someone with autism, you know someone with autism. So telling a parent this is NOT comforting at all. It hurts. Don’t say it. What should you say when your friend tells you their child’s diagnosis? You should listen, validate their feelings, and let them know that you are there to support them. Sometimes just holding space with someone means the world.

2. My kid acts out, too. It’s totally normal.

There is a big difference between a child throwing a tantrum and a child with autism having a meltdown. When a kid has a tantrum, they often do it for attention, have control over themselves, and are able to calm themselves down afterward. Whereas with meltdowns, the kids don’t do it for attention, have no control over themselves, can’t articulate their needs, and often can’t calm down on their own. I didn’t realize how different the two were until my second son came along.

3. I don’t know how you do it. I couldn’t handle it, if it was me.

This is one of those well-meaning comments that really don’t help. Because, to be honest, I don’t know either, and you saying that to me just depresses me further. I’d take a “that sucks” over an “I don’t know” any day.

This goes for “I understand,” too. Even if you have a special needs child, you don’t actually understand what it is like to raise another person’s child. Instead, validate their feelings and listen without giving advice. One of the things that makes a big difference for me is when my friends “kidnap me” and get me out of the house. This isn’t always an option for some families, though.

4. Not saying anything at all.

Yes, people stare, and it’s not helpful. When my child is in the middle of a major meltdown, the last thing I need is to have half a dozen judgy moms staring at me. Like other special needs parents, I already feel alone and crappy as a parent. Having other moms watch in judgement just further isolates and depresses me. I know I am not alone in this feeling. What would I like for people to do instead? Pick up something if I drop it in the fray, hold open doors, invite my kid to your kid’s parties, etc.…

And while I’ve had some bad experiences in the past, I have also had good ones. Over the years, many cashiers have whispered encouraging words, and strangers have helped me get out to my car or offered me a friendly smile. I also have some amazing friends who help me navigate the rocky terrain of parenting a special needs child.

What are some ways that strangers and friends have helped you? And what are some of the hurtful things people have said to you or your child?

Why I (Sometimes) Hate Autism 

Having gone to great lengths to heal myself after my own troubled childhood, I didn’t arrive at my current state of mind quickly. It’s been a gradual thing over the last few years. Ever since my third child’s birth in 2014, which coincided with my eldest daughter Polly’s challenges becoming evident, life has been a total roller coaster. It pains me to say this, but we have way more downs than ups in my little family, and it’s been like this for longer than I care to admit.

The hardest part of 8-year-old Polly’s autism is watching how she treats 3-year-old Freddy and 5-year-old Clara. It went past standard sibling rivalry long ago, and morphed into something so ugly I can’t bring myself to say the words. Polly went through a phase of using me and only me as her punching bag (verbal and physical). I could handle that. It wasn’t pleasant, but I’d rather be copping it to keep the little ones safe.

Unfortunately, after a series of setbacks, she’s back to picking on them with force. Her anger and violence often comes out of nowhere. She goes from zero to 100 in five seconds, and after she’s hurt the three of us, I’m left bewildered, picking up the pieces. The very worst part is that she knows how to behave appropriately in public or with her friends. It’s just us she chooses to treat this way.

Seeing the effect of Polly’s aggression on Clara and Freddy has been nothing short of heartbreaking. Watching them copy the behaviour is tough enough, but when Clara takes out her own frustrations on Freddy it makes me want to weep. And it’s happening a lot lately.

Usually I’m as good at masking my sadness as Polly is at masking her high-functioning autism. Lately though, I’ve been told that I look tired, and am being asked a lot if I’m okay.

Just to be explicit, I am not okay. 

I’ve made myself vulnerable recently, asked for help from the only people in a position to give it, and was told that they are too busy. I’ve also enquired about autism-related services, which were free six months ago, but due to funding cuts here in the U.K., they now cost a fortune that we don’t have.

I have had a terrifying glimpse into a future that I can’t even allow myself to think we might lead long-term.

“Friends” are dropping like flies, leaving me to question whether I’ve become a toxic influence. Am I unbearable to be around? It’s making me wonder.

My body started giving up; I knew it was only a matter of time before it did. It’s well-documented that chronic stress will eventually turn into disease.

This is how it starts.

This is how the rot sets in, and the bitterness creeps into your exhausted, aching soul. When you look around and see that everyone else is thriving, but your family is scraping the bottom of the barrel, barely surviving most days. It makes you angry and resentful. I hate autism for making me feel this way. For robbing me of the ability to enjoy my children.

I tell myself over and over that I’ve been through worse. My goodness, what I’d been through by the time I was Polly’s age! I will come out winning, if it’s the very last thing I do. Right now, though, these soul-destroying dark days are killing me.

“The kids will be fine,” they say. But what do they know? Are they experts in violent, challenging, autistic children? Of course they’re not. They rarely are. Well-wishing platitudes from insincere people have no place in my life.

Rise above it.

Some days I hate autism. If I could meet autism down a dark alley—my goodness, I’d kick its butt.

Some days, when the kids are finally in bed and all that’s left is the ringing in my ears, there are no words left to say or tears to cry.

And other days? I engage my reserves and summon every bit of strength I have to rise above the screaming and shouting and hitting and kicking and throwing and name calling. I dish out the positive vibes and mama love like there is no tomorrow.

Even when the challenges seem insurmountable, I’m able to rise above them and continue smiling.

On these days I win and, in turn, my children win. And when all is said and done, that’s all that matters.