My Great Autism Parent Expectations

Recently, buying my child a pair of jeans almost caused me to have an anxiety attack.  For years, my son refused to wear them (read: meltdown). Instead, he wore activewear. Things with stretchy waistbands and breathable fabric. To the point that I thought that he wouldn’t wear anything else for the rest of his life.

Special needs kids all have a line they draw in the sand for things they are willing to try and things that they will flat out refuse no matter what. Whether it’s only eating yellow foods, or putting their clothes on backwards, or not getting dressed until their clothes are lined up neatly on their bed. When he was younger, I remember setting up my son’s clothes on his bed, just so, and some days I even let him go to school with his shirts and pants on backwards. Because moms have a line in the sand, too. I chose my battles carefully.

But things change. I don’t have to set out his clothes anymore and, for the most part, he puts them on right. Every once in a while I still have to ask him to turn his shirt around before leaving for school, but it’s no longer a line in the sand.

An in-home aide once told me not to try and create a world where he didn’t have meltdowns, but to raise my expectations of him … help him be prepared for an adult world that doesn’t allow for accommodations. It’s hard to do that, though, when the meltdowns last all day and night.

You try to figure out what things they CAN do for themselves and what things the autism and other associated diagnoses make nearly impossible to accomplish. Finding a way to help them cope and function outside the safe four walls of home is terrifying. And then, one day, you find yourself raising the bar because they’ve mastered that milestone. Or they raise the bar for you.

A few days ago, I found myself sitting in a changing room with my son while he tried on half a dozen pairs in search of the perfect pair.  I watched my growing boy making a big first step. I know … it’s just jeans. But it’s never just anything, when you have a special needs child. The losses always outweigh the wins. So when even small milestones are achieved, it’s reason to celebrate. Because each new step is a hard-won step.

Parents Make a Mini Blockbuster Store for Their Autistic Son

Blockbuster declared bankruptcy back in 2010 and even though DISH Network bought the last stores in 2011, most of us just assumed that all Blockbuster stores were long gone. But it turns out that there are still a few in Alaska and Texas.

Unfortunately, the one in Sharyland, Texas, also just closed its doors, and its closure has gotten Twitter user Jaavii’s 20-year-old brother, Hector, upset. Jaavii posted on the social media site that his brother, who has autism, “was sad that Blockbuster was closing down.”

But Hector didn’t have to be sad for long, as his parents built him his own “mini Blockbuster,” stocked with his favorite movies and cartoons. They even got a DVD rack topped with Blockbuster signs that they’d bought from the store when it closed.

While Hector is non-verbal, Jaavii’s photos show that his brother was happy and clapping with joy. Our hats off to these enterprising—and ausome—parents.

When the Weight of the Unknown Is Crushing You

There was a time before our son’s autism diagnosis when I felt completely lost. Everything we had brought up to the pediatrician had been disregarded. He was significantly behind in speech at 15 months old. He wouldn’t pick up food or even hold his own bottle or sippy cup at one year old, and his meltdowns from sensory issues and transitions were occurring hourly. He just seemed miserable all of the time. We thought maybe severe allergies were bothering him, but everything came back negative. We took him to the dentist because he was constantly chewing on everything, but that all looked normal. I finally sat down one night and took the MCHAT (the autism screening tool) online and realized that even though he made eye contact, he had pretty much every other red flag.

So, at three years old, he was evaluated by the school district and then by a medical team. Both teams came back with a severely autistic diagnosis. And I felt relief to finally know. And I felt bad that I felt relief. But I was glad to finally have an answer and hopefully a way forward to help him.

However, after they finally answered that unknown, it only opened up the door to many more unknowns. The more I read on the subject, the foggier I was on everything from treatment to which resources to trust.

I remember being told at his kindergarten IEP meeting that in a couple years we would have to make the choice between a diploma track or a certificate of completion track. How am I supposed to make that decision in third grade? How do I know if he will have the attention span to take the required yearly state tests? Will they accommodate him? With his behaviors currently so sporadic from one week to the next is mainstreaming him at any point a total pipe dream? Will he be one of those autistic children who responds so well to interventions that we should have chosen the normal diploma track?

At that same meeting, we were handed a pamphlet about getting on a waitlist now (in kindergarten) if we think he would need Medicaid services or housing after he gets out of school. Oh, that one stung. When we are looking at our savings and our options, we do not know if we should be setting aside a college fund or funds to put him in a home. We do not know if we should put anything in his name, as it could disqualify him from getting disability when he ages out of the education system. Will he need disability? I suspect so, but I hope not. What will happen to him when I’m gone? Will his siblings take care of him? Is it right to even ask that of them? I just don’t know, and it weighs heavily on my heart and mind.

When we look at the therapies and the educational setting that is helping him so much right now, we don’t know how long it will last. Will they pull services out from under him if he progresses too much or too little? Will the government cut funding to services that help him and others like him? Will our insurance continue to cover the therapies he is getting, or will accessing those services get harder and harder? Will his new school district be able to offer him an appropriate education next year? I’m not sure of any of that, and I think most of us autism parents are holding our breath expecting the other shoe to drop.

He is currently on a medication regimen that is working for him. Do the benefits outweigh the long-term side effects? I hope so, but I don’t really know. Will this medication work for him for awhile or, as his body changes and he grows, will we be back to square one? It’s another unknown and another issue we know we could be facing just around the corner.

I feel like all of the unknowns run on a constant cycle in my head. The anxiety over the unknown can sometimes feel like an unbearable weight that I have no choice but to bear. The best thing I can do as his mom is to focus on the now and hope the answers to unknowns reveal themselves in time. Until then, I’ll hope for the best, prepare for the worst and love him with all I’ve got.

How I Transition My Son Back to School After Holidays

As a mum of seven, I have many years of experience with the back-to-school thing. New shoes, earlier bedtime and alarm call, packed lunches and hunting down the PE kit. But that was before we had a child diagnosed with ASD.

Towards the end of term, my boy was getting more and more distressed with every day of school. I was having to become more and more imaginative with ways to coax him off the floor, to eat and get ready for school, to get out of the door, along the road, into the playground and finally into the classroom.

It was exhausting and upsetting even without the scornful/pitying/bewildered looks from other parents.

I am lucky in that I get a good level of support from my son’s school, but even so I breathed a sigh of relief when the Easter holidays finally arrived and I could take a day off from that particular nightmare.

I wondered if the lack of school routine would prove difficult, but once I had decided that on the whole, dressing in day clothes could be optional, he soon settled into his own routine. It made it much easier for him to tolerate any plans we had as a family.

The end of the holidays were looming – they are always over far too soon. I realised to make transition easier for him, I was going to have to start preparing him to go back to school.

We started in the same way we prepare our neurotypical children: Being more aware of the bedtime routine, bringing meals back to more “school hours” friendly times. Sorting out uniform, shoes and PE kits. (I swear someone steals them and hides them during the holidays!)

I decided it might be good to talk about what was going to happen with my boy – he likes to know what the plan is.

Firstly though, I talked about what we had done through the holidays. We chatted about what he had enjoyed most and why. He was relaxed and happy remembering all the fun he had had. Then I suggested he could tell his classmates and teacher about his favourite thing – we talked about how he could bring it up and what he might say. We discussed taking a shell he found at the beach in to show people.

He will spend all of his time alone if left to his own devices, so I thought this was a good way of giving him tools for the cloakroom/playground socialisation he often struggles with.

I allowed him to choose his favourite underwear for the following day at school, and put his favourite comfort foods in his lunchbox – OK, so it was a bit beige, but I knew he would eat it and be happy to see his faves in there rather than be challenged by unfamiliar or less-tolerated foods.

I talked to him about what he might do during the school day. I then chatted about what he might like to do after the school day had ended, which he enjoyed.

When it came to crunch time, he still fell to the floor and went into his panic mode so, yes, I confess, I bribed motivated him. I showed him three tiny chocolate mini-eggs and promised if he walked nicely to school with me, he could eat them in the playground. I promised my neurotypical daughter she could have some when she got home – luckily, she’s very understanding of her brother’s different needs.

This did the trick and he went into the classroom with no further stress.

The next day, he was more settled. Although he was initially reluctant to leave the house, he responded to our more usual chocolate-free motivational efforts – timing, playing verbal and spotting games, and planning future events that he loves to do.

I am lucky – my boy is verbal and bright, but still the school run can descend rapidly into an emotional car crash without planning and careful management. I’m always looking for new ways to make life easier, for him and for the rest of us at that busy time of day.

To the Mother at the Swimming Pool With Her Autistic Daughter

I didn’t notice you when I first arrived at the local aquatic centre. Amongst the usual commotion of scuttling children and bustling parents, I was too distracted by my two excited little boys, each racing off in different directions.

Although I’m at the pool every Wednesday afternoon, taking my sons to their swimming lessons, today was the first time I’d seen you there. You and your remarkable daughter.

I was sitting alongside the pool, attentively watching my eldest boy at one end practising his freestyle stroke, and my youngest at the other end blowing bubbles under the water. You probably didn’t notice me, lined up with all the other mothers.

But I noticed you.

You were nearby, in the warm-water therapy pool with her. With your intriguing daughter, who was looking only at you, but not really seeing you. With your beautiful daughter, who was severely autistic, and in another world. But that’s not what made you stand out to me.

The brightly dressed lifeguards were busy patrolling the lap pools, and the lesson pools, and the free-play pools, and the wading pools. Kids of all ages and sizes. Parents of all ages and sizes. The lifeguards didn’t bother you. They didn’t attend the therapy pool. Amidst the chaos, you and your daughter had all the time, all the space, and all the calm you came for. But that’s not what made you stand out to me.

Your daughter’s intense face was framed by a short and flattering hairstyle. I wondered how bearable it had been for her to sit still in the hairdresser’s chair. I wondered how well she had tolerated the hairdresser’s touch. And I wondered if she recognised the effort you put into her appearance. But that’s not what made you stand out to me.

You held her and moved her, letting the water soothe her senses. Your intimate connection, born from years of close care, was obvious even without your touch. But you looked tired. And you looked worn. Even as a mother myself, I knew I could never comprehend your tiredness. Nor your life. But that’s not what made you stand out to me.

What made you stand out to me, and what I admired more than anything else, was your strength.

Because not only were you a mother at the pool with your autistic daughter, but your daughter was in her forties, and you in your seventies.

Your life as a parent has been so different from most. Your journey as a mother unrecognisable to most. How many tears have you cried for the sake of your daughter? And how many dreams have you put aside?

Although it may not be the motherhood that you would have chosen, it’s a motherhood that you have courageously embraced.

Time drew in and you gently helped your daughter out of the pool, just as I did with my boys after their lessons. Your daughter became distressed when being led towards the rinsing showers, and it took you a long time to coax her under the spray, while my boys dashed in and out of their own showers in childish delight. And you eventually urged your daughter quietly into the changing rooms, as we noisily made our way into ours.

In the car park, I passed you once more, tenderly leading your daughter towards the car. While I silently applauded your patience and grace, my boys whooped their way over to the nearby playground. By the time I dragged them away from the swings, you had finally settled your daughter into the backseat.

And then, as you buckled your adult daughter into her seat and I buckled my young sons into theirs, it was obvious that we were mothers side by side, but worlds apart.

We drove our separate ways, but you still filled my mind. What does home hold for you? What does tomorrow hold for you?

Your daughter may never be able to appreciate how much you do for her. And how much you care. She may never know how truly lucky she is to have a mother like you.

But I want you to know that I do.

————

This post originally appeared here.

Waiting Is the Worst

I try and be patient, really I do. However, I find myself waiting by the phone, or the letterbox, or refreshing my email account every time there are results due, or a decision to be made.

Waiting is the worst.

For the 7.5 short years that my gorgeous daughter has been in this world, I have been waiting, and do you know what? I don’t even know what for.

We have lots of answers, lots of diagnoses that we just seem to be gaining at every appointment. Like a collector managing to find all but that one most rare figure that they need to finish the collection, we are waiting for that one diagnosis that will finally bring all of those little ones together, pulling them all in and tying them all up neatly. That last figure on the shelf making the collection complete.

Except it won’t help, will it? Once that collection is finished, there will more than likely be another collection to collect. Another diagnosis that doesn’t make sense, more appointments, more letters, and more waiting.

Waiting is the worst.

I thought that my daughter’s diagnosis of autism was the last piece for us – the final piece in the collection. We had to fight, we had to plead, and we had to push. She masks her symptoms of autism, you see; she conforms to a society that doesn’t quite understand her. She holds it all in and she releases when she’s home. Her safe place – her haven.

It turns out that her Autism diagnosis was just the end of the beginning. We still needed to collect the extras, and are still hunting for the rare. Researching symptoms that point us to the middle of nowhere, several directions to take and lots of dead ends, waiting on further directions, extra referrals.

Waiting. Waiting is the worst.

As I sit here – waiting for my rare collector’s item, I can’t help but wonder how many more of us are in this situation? How many more parents are out there that thought an Autism diagnosis would be the end, only to find out it was just the beginning?

Waiting, watching, researching, wondering, consumed by thoughts that lead nowhere certain. Just a list in your head of points to remember to mention at that next appointment. Another collection, more waiting.

Waiting is the worst.

Four Things My Severely Autistic Son Has Taught Me

Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge, but that I would also learn and gain so much.

Then one day my baby was diagnosed with severe autism. Everything I had ever known about parenting suddenly changed.

I went from being the teacher to becoming the student; despite my son having no ability to speak, he has taught me more than any speaker, any book or any course ever could.

Here are four things my severely autistic son has taught me about life:

1. If you enjoy something, repeat it

All too often in life we are told to “move on” or “grow up” or “you are too young for that!” My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on YouTube over and over. He presses the same button on the same toy repeatedly and still laughs.

Isaac has taught me that if something fills your heart with joy, never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life repeated over and over again.

2. Stop worrying about other people

Isaac has no awareness of others. He is not afraid to get on a slide, even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap, even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or whether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd.

He is blissfully content being who he is exactly and how he wants to be.

I want to be more like that. Life is not about doing what everyone else is or pleasing others. He is different and happy to be so, and there is a lesson there for all of us.

3. There are other ways to communicate without using words

I talk far too much. Many of us do. Isaac cannot talk at all ,so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, screams if he is unhappy or scared, takes my hand to lead me, and finds photographs of things he wants.

To most people, his communication is too basic, too rudimentary to learn anything from. They are wrong. Speech is not a “higher” level of communication, but rather a way to communicate that is actually too easily misunderstood. We can say we are happy, yet our body language says otherwise. We can say we love when we actually don’t.

My son simply shows me in beautiful and simple ways. They say actions speak louder than words — perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more.

4. Don’t worry about the future, just enjoy today

Isaac has no concept of “future.” He lives in the here and now and, at 8, is just about coping with the basic idea of “first and then.” He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism. He lives in the moment. He eats food and enjoys every item with no consideration for cost or sell-by dates. He is as content to eat an out-of-shape vegetable from a low-cost supermarket as he is to eat out in an expensive restaurant. As long as he gets to eat, he does not care.

He never stresses about money or where it will come from, and neither does he desire anything of any real value. He will play with a coat hanger, flapping it for hours, without any idea that most people would view it as trash. While we may not be quite as able to “live for the moment” as he is, we certainly could learn from his carefree lifestyle and worry much more about today than the future.

“First today, then tomorrow” could be a motto for us all.

Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same YouTube clip that he laughed at yesterday, and the day before, and the day before that too.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him. He brings me delight every day. He has so much to teach us. He may be severely autistic and non-verbal, but the world is a better place for having him in it.

People tell me he needs to be more like us. I disagree. We need to be much more like him.

A ‘Thank You’ to an Autism Parent

Last night was Talent Night for our kids—yours and mine and other 6th, 7th and 8th graders at their school. If you felt like I did, you were a little bit of a nervous wreck inside, though you tried your best not to show it, lest your child get nervous too. I don’t know you, but I assume you sat there, like me, in that darkened auditorium, cheering on other people’s children. You waited both apprehensively and excitedly for your son to step onto that stage and hold his own among his neurotypical peers. I waited for my daughter, no less apprehensively or excitedly, to rise above a less-than-stellar sixth grade year.

I don’t know your son, but I noticed the quiet murmur that went through the audience when he stepped into the spotlight. My son, sitting next to me (two years older and dragged out that evening against his will), leaned in and whispered to me that your son was always singing and yelling in the school hallways, often loudly. The halls, as you know, are supposed to be quiet and orderly. I understand—my daughter is an “inappropriate singer,” too. She’s also disorganized, and not wholly socially adept. I’d spent the year fielding calls from the school counselor, nurse and, on one occasion, vice principal. It’s been a rough year.

Your son opened his mouth, and the audience went silent. I hope you were recording his performance; I bet your hands were shaking. He was amazing. Any fears you might have had probably disappeared before he was even midway through his performance. He may have had some quirks, but his voice stayed strong. When it was done, he was so proud of himself.

When he went to take his seat, I noticed in the dim light that he was sitting next to my daughter. It turns out, though you and I don’t know one another, they’re friends. She raised her hand to him and they high-fived one another.

Eventually, it was her turn. As the spotlight came on, there she was, sitting on a stool with just a microphone and her beautiful voice. I couldn’t help but admire the guts that it took for her, for your son, for any of those kids who aren’t necessarily the popular kids at school, to stand up in front of their peers and do their thing. They exude a confidence that, while I’m not sure about your son, my daughter doesn’t always have. A bully had helped take some of that confidence away just this year. We’re working to get it back.

And that’s why I want to thank you. Because when my daughter was done, she too went back to her seat. And your son put his hand up and offered her the same high-five that she’d offered him earlier. She returned it and sat back down next to him, a wide smile on her face.

This month, as all of us know, is Autism Awareness month. Some people argue about the merits of awareness vs. acceptance, and whether one is more important, more useful, more necessary than the other. As the mom of a neurotypical child who often walks to the beat of a different drummer, I’m grateful to your son for being quietly aware and accepting of her. It means more to me than you’ll ever know.

Let’s Get Real About Autism

Every single child on the autism spectrum is wired with their own unique set of differences, needs, challenges, abilities, characteristics, co-morbidities and outcomes. Therefore, I want to get real about autism.

I am tired. I feel ill-equipped to engage in the special needs division of fighting, pleading, advocating, correcting, helping, providing, pushing, competing and crying for my son. My heart is torn between this fierce desire to keep my son encased in a safe, secure bubble, protected by those who understand and love him best, and the painful realization that I must also share him with you.

I must expose him to your children, take him to public spaces where his meltdowns scare off his peers and draw negative attention from critical onlookers who question my parenting skills with their piercing glances. I can’t protect him from those who judge, from children who tease, from experiences he doesn’t yet understand but is required to participate in.

Exposing him to the world is just one of the perpetual fears I struggle with daily, guardedly draped beneath a velvety blanket of anxiety, distraught, stress and worry because it’s true: He is different, unique, beautiful, and yet, misunderstood. As spring approaches and the ever-occurring/always-reminding month of April crept closer, I prepared myself to be emotionally adequate to withstand the 30-day stretch of Autism Awareness month and its constant reminders and advertisements that pummel my heart and cripple my soul.

Autism, by my definition, is a neurological disorder that robs, steals, hides and complicates. A disorder causing pain, trauma, fear, anxiety, unpredictability and doubt so thick it’s disorienting. Be forewarned: If you are hoping to read yet another beautifully written story about children that have beaten the odds; discovered their high IQs and unique gifts; attended well-designed, fully-equipped schools; and participated in elaborate programs with creative therapies; and you like unicorns and rainbows, then please stop now, for my story is not for you.

I’ve read those stories too, but find them difficult to relate to. I’ve hoped, dreamed and prayed for those stories to happen similarly for our little boy. I’ve searched for those schools, therapists, programs, insurance companies and services that our son deserves as well. I’ve read, studied, listened and researched and, quite frankly, I’m overwhelmed and exhausted. There’s a constant, excruciating pain ripping through my heart like a double edged sword and it hurts like hell. Let’s get real about autism.

Antagonistic emotions battle for primary residence within my soul; a labyrinth of perplexing, complicated, contrary forces struggling to reclaim harmony. An absurd intensity of hope, love and admiration combined with perseverance and zest bestow clarity and reveal endless possibilities, a positive outlook, a permissible moment in time to release deeply rooted stress. The affirming emotions create a warmth like that of the sun’s rays as they slip through the impaired windowpane, yes, the one previously shattered by an explosive meltdown. Regrettably, the heart’s chambers contain valves that allow blood flow to permeate and move about, its interconnected components mixing and muddling the clarity with tainted sentiments.

This afflicted portion of my heart struggles with negativity, meltdowns, anticipating unexpended behaviors, calculating risks and medication doses, insurance companies that refuse to cover care, hopelessness, bills, schools without funding. It all causes panic to ensue, depriving cells of necessary oxygen, misguiding thoughts to certain death. The constant stress of IEP meetings, sleepless nights, wondering if you have the correct therapies in place, if you’re doing enough or even if you are enough. Keeping these complexities isolated is nearly impossible, yet I put on my brave face and smile for my sweet boy as he looks to me for safety, security, predictability and love. He melts my heart over and over.

I must admit that the dark, quiet space in the far corner of our master bedroom closet is mine. I have claimed this space as a sanctuary I can retreat to, curl up into a ball, hug my knees tightly and let the tears effortlessly stream down my face like the pouring rain, occasionally gasping for air in between unforgiving sobs.  Nothing brings me to this space like an unpredicted, publicly displayed meltdown. Nothing makes me feel more like an ill-equipped, crazy mother like an hour-long outburst. Nothing brings me to tears more often than the emotionally hurtful screams, wild flailing arms and toys catapulted across the room like missiles abruptly launched from a silo.

It is autism that has created this nook beside the shoe rack and carelessly strewn clothes, underneath the hangers where clothes should be neatly hung. It is autism that has me questioning my strength, searching for God, answers and inner peace, challenging my weaknesses, and scarring my soul. It has me grasping for answers, longing for camaraderie, consulting with specialists, and attending support groups mostly comprised of other exhausted moms.

Autism is often disguised behind typically developed appearances and ordinary features, secluded in specialized classrooms within traditional schools, observed near swing sets sited on neighborhood playgrounds. Often, it’s saturated with painful, lonely, frightened, peculiar characteristics. It can routinely rob a child of playdates, birthday invitations and summer camps, as well as isolate families from casual dinners, relaxing vacations and desperately needed babysitters.

These complexities are intricately woven like a spiral orb web between social and behavioral deficits and heart-wrenching situations. They are undeniable, understandable and taxing, yet gratefully intermittent. Despite this sticky, yet carefully engineered web of autism, I am steadily discovering my voice, learning to advocate, and creating avenues for awareness, acceptance and equality.

Let’s get real in this arduous journey. We are not alone.