How Raising an Autistic Child Has Challenged (and Strengthened) My Marriage

This month, my husband and I will celebrate our twentieth wedding anniversary.

Twenty years ago, I wasn’t concerned with the latest autism research, inclusive education or fighting for disability rights. I was worried about my weight.

My wedding dress fit perfectly except for an ugly bulge of belly fat. Three weeks out from W-Day, I started an emergency Slim-Fast diet, replacing meals with eight ounces of pink, strawberry-flavored froth.

By some twist of logic, I persuaded my fiancé to diet with me. It wasn’t fair, I protested, that brides have to starve themselves into Barbie-sized dresses while grooms get to marry in the relative comfort of suit pants. I railed against unrealistic images of feminine beauty, sexual double standards and the objectification of women until he said, “Alright. I’ll do it.”

Every night for three weeks, we power-walked around our Chicago neighborhood, returning to our battered, shoebox-sized apartment. We’d roll out the TV cart, crack open two cans of Slim-Fast and watch countless episodes of Mad About You. We couldn’t wait to be married, simply so we could go back to eating solid food.

Fourteen years later, we were blessed with a son. It was a difficult conception and a near-catastrophic birth, followed by several years of anxiety about his development. By age 2, it was evident to me that our son had challenges and required more help than we alone could give him. My husband disagreed.

For several months, we stayed up most nights arguing. We fought over the inconceivable question of whether or not there was something “wrong” with our child. I maintained that our son’s behavior was out-of-the-ordinary and we needed to intervene now. I cited as evidence the increasing number of “incident slips” being sent home from our son’s preschool and their urging to get him evaluated.

My husband agreed our son could be intense and difficult to manage, but not exceptionally so. Lots of boys act up, he insisted. He wanted to hold off on any kind of evaluation to see if our son’s issues would resolve themselves over time. He didn’t want some doctor mislabeling or meddling with his boy. He accused me of over-reacting; I accused him of denial.

The distance between us grew. In the past, we’d always been on the same team. Whether partaking in a ridiculous diet, facing a family death or undergoing infertility treatments, we’d endured our struggles together. Now, when the stakes were highest, we each felt abandoned by the other.

The turning point came late one night after a prolonged argument. We each lay in bed, staring up at the ceiling in a silent stalemate. We had reached that devastating precipice in a marriage where there is nothing left to say and the future feels uncertain.

Finally, I turned and faced my husband. It was as though I was seeing him for the first time in months. His eyes were red and swollen and his forehead deeply creased. His look devastated me. I saw in it a mirror of the worry and anguish I thought I carried alone. He clearly felt it too. Seeing him so vulnerable stripped me of my own defenses. I began to cry.

“I’m so scared,” I said. “I love him so much. I don’t know what to do.”

“Me too,” he said.

We reached out and held each other tightly.

I can’t say we’ve agreed on everything since. When we do disagree, it’s this place we try to return to: a place of joint tenderness and vulnerability, of being held together by our fears but united in our love for our child. Neither of us would ever accuse the other of not loving our son. We both want what’s best for him even when we disagree on what that is.

I never lost my belly fat. Two kids and 20 years have only added more bulges. Still, I might purchase some Slim-Fast for our twentieth anniversary. We can split a can, watch reruns of Mad About You and remind ourselves of the challenges we have overcome.

The original version of this post was published here.

Staying Positive, Even When Some Days Are Hard

The power of social media and the internet is amazing. Information is at our fingertips whenever we’re ready to access it. Yet, immediately after Joseph was diagnosed with autism, I could not face the plethora of information that was out there. It was simply too overwhelming.

Support groups, online chat forums, literature, workshops. You name it, it was there ready and waiting, but my emotional state at that time couldn’t absorb what I knew was there to help me.

When I did eventually open up, it seemed like everyone knew someone who was autistic and had a story to tell. Although well-meaning, I still didn’t want to hear it.

The reality of autism is there are so many different facets to it. At age 3, I didn’t know where my son would fit; I still don’t know now. I’ve heard countless tales about people with autism who go on to gain a degree, get married, live independently. And whilst these very stories are amazing and give me hope, I know that it is highly unlikely that Joseph will achieve any of these.

Now please don’t mistake me for one of those parents who cannot see any positives and who doesn’t encourage their child to reach for the stars—far from it! And equally, I won’t be told that my son won’t achieve anything, either. It’s just so hard to know what the end game will actually be and this is why I avoided reading too much about autism in those early days.

I didn’t want to be surrounded by negativity and I don’t want to be surrounded by false hope. I needed to feel comfortable with the diagnosis before I could expose myself to those situations.

I recall sitting amongst a group of parents, who talked for two hours about all the issues that were causing them stress. Although I strongly believe in the need to offload now, it wasn’t for me then. I wanted to be surrounded by people who were slightly further down the road, who could tell me: “You know, I absolutely get where you are coming from and that it is shit, but you’ll get through it.”

So, by the time I started my blog, I decided that’s what I wanted to be able to do for other people. I can’t tell you whether your child will be capable of attending a mainstream school or a specialist one. I can’t tell you whether your child will ever sleep through the night or whether they’ll ever use the toilet. But what I can tell you is this: We all have very different experiences, and your parenting style needs to fit with you as a family.

Never assume that your child cannot achieve something, purely because of his or her diagnosis. It may create hurdles along the way, but I truly believe that Joseph may not have had the same successes if I’d had a different attitude.

I once heard a parent say that her child constantly took his coat off in the middle of winter and didn’t feel the cold. She went on to say that she couldn’t tell him to put it on because he had autism—he wouldn’t understand. How did she know that? How did she know that part of it wasn’t him being a typical 4-year-old boy pushing the boundaries?

Truth be told, I never know how much of what Joseph is rebelling against is due to his autism or because he’s a bright young lad who’s trying his luck. If I always said that he couldn’t do something because of his autism, I am certain we would be dealing with a very different child now.

I’ve always had the “can do” attitude and want Joseph to be exposed to as many different situations as he possibly can. I want to push him out of his comfort zone without him falling to pieces, so that he can see and feel more of the world. I access as many mainstream activities and services as possible, but know when to pick my battles and choose something that may be tailored to children with autism.

I’m a strong advocate for inclusion and integrating children with additional needs into mainstream education, with the caveat that they are able to learn, achieve and receive appropriate support. Looking to the future, it is likely that Joseph won’t continue his education within mainstream, and there would have been a time that I would have seen that as a failure on my part.

Now I realise that failing would only be if I put my own needs before his.

How One Mother Connects With Her Autistic Son

Parents of children with autism are all looking for a way into their child’s world. Autism encloses people inside like a turtle shell. But every once in a blue moon, if you’re lucky, you find a way in or they peek outside.

I’m fortunate to have found a window into my son’s world. My son fell in love with reading early on. He’s twice exceptional, which sounds like a positive thing, but if you have a 2e kid, you know that it’s rife with challenges. There’s been one silver lining through it all and that’s been an early love and aptitude for reading.

When my son was three, his preschool teacher told me to not encourage him because he would be bored when he got to Kindergarten. But I ignored her request. Reading calmed him down and made bedtime somewhat manageable.

As a professional writer and an avid reader, I can’t even tell you how much it warms my heart to often find him squirreled away somewhere with his nose stuck in a book. At last I found something to share with him! I joyfully join him in quiet reading time and listen to him give detailed analysis of the books he reads. If he asks for a new book, I get him one without question. Read at the table during dinner? Yes!

Now that my son’s a preteen and wracked with big autism feelings and hormones, reading is still one of my go-tos when it comes to calming him down. Since he reads so far above his grade level, we now also do book club, where we read and discuss novels together. We plan to tackle Harry Potter soon.

The true bliss came this month when he started to write a novel. Just like his mom, he’s in love with storytelling. It’s another way we can connect. His stories are clever and funny. One day he said we are going to write together and be famous co-authors. It’s something I look forward to.

So much of the time, my boy is in his own world—one that I don’t have access to. So when I get a chance to spend time with the child within, I jump at it.

The fact that the two things he loves best are things I love too is just gravy.

A Day in Our Life With Autism

I am a mom with an unusual life. I find myself trying to explain our life with autism to others, and I often get strange looks from people who can’t grasp our life. So what is my autism household like?

Let me explain just a small part of it…

I can’t change our routine. If I do, we pay for it through maladaptive, impulsive, and hyper behavior. I have to be consistent with everything. I can’t change anything—consistency is the key. We live off of routine and consistency, yet we never know what each day will bring. It takes strategic planning to do anything out of the ordinary.

I have to teach my child absolutely everything. Nothing comes naturally; everything has to be taught.

My child eats the same thing for every meal, every single day. He eats the same snack, every single day. He drinks the same drink, every single day. Therefore, I visit the drive-through at McDonald’s, every single day.

We sleep some days and some days we don’t.

We watch the same thing over and over on T.V because it is the only thing he will watch.

There are lots of meltdowns and tantrums. My child has them because he is unable to communicate and has a hard time adapting to an ever-changing world. I have them because I am tired, exhausted, and stressed from autism.

It’s not unusual to find my son on top of my kitchen table, counters, or anything else he can get up high on.

I eat, sleep, and breathe ABA. Oh yes, I speak in a lot of acronyms all the time. I can also tell you what IDEA, IEP, LRE, ST, OT, PT, and AAC are.

I’m sure that every insurance company does not like me because of all the arguments I have to have in order to get my son the medical help he needs.

I am constantly doing paperwork for my son.

I live behind locked doors 24/7 to protect my eloper.

We can’t leave our house without all of our “favorite items” for the day.

My house has a lot of picture schedules, first/then charts, and all the other kind of visual charts that help my child.

We panic without Wi-Fi and it’s not just my child—it’s me, too, because I know what no Wi-Fi can do to our life!

I have a special swing, trampoline, weighted blankets and vest, and all other kinds of sensory items for my son to meet his sensory challenges.

It’s not unusual for him to take numerous baths each day to meet his sensory needs.

My sons live with high anxiety and chronic stress due to their challenges. Therefore, I live with them too, now.

My guard has to be up 24/7 and can never be let down.

We stay home, all the time. He can’t handle all the anxiety and sensory input.

The list could go on and on. Our autism life may be unusual to some, but it has become our normal. I’m not sure I would know what a day feels like without meltdowns, therapy, worry, stress, and everything else that comes along with autism. Sure, I get tired of it all. But in the end, it makes us who we are and at the same time makes this life very interesting.

Autism Isn’t Just for Boys

Autism isn’t just for boys, you know… This is a well-known saying amongst my fellow bloggers that we are continually pushing out there. As a parent of a young girl diagnosed with Autism—with a demand avoidant profile, more specifically known as PDA—I feel that society is letting these girls and women down continuously. Everywhere I look, I see young boys used on posters for autism, or flyers for autism courses. When a national news outlet has bulletins on autism, they choose to interview parents of boys, or male adults themselves.

It is so frustrating that we cannot get our girls into the media to describe their characteristics, to show that Autism isn’t just for boys.

I have personally been bumped by three different news programmes in favor of parents who have male children diagnosed with autism.

We know that some autistic boys rock, we know they like to line up toy cars and spin the wheels, favoring the visual stimuli over the expected imaginative racing games that neurotypical children often choose.

We know that some autistic boys bang their heads, flap their hands and squeal.

Well I have a newsflash for you, and a message to all the people who prefer the cute little boys on their posters, and the parents of boys on their sofas. My little girl, my AUTISTIC little girl, yep, she does all of the above too. And more.

But the most important point to remember here is that some autistic girls have developed strategies to mimic, mask and copy, and they can fool you all into believing they are neurotypical.  People need to broaden their horizons and listen to us—the parents of girls—because Autism isn’t just for boys, you know.

What better way to teach people that Autism is a girl thing too than by making them your poster girls, or the topic of your news bulletins? How are we supposed to support these girls like we do the boys if there is no mainstream information about them? How do we make people see that Autism is a Girl Thing too?

It really upsets me that there is such a stereotypical view of autism, and this really needs to change. Far too many autistic girls are being misunderstood and brushed aside, because they manage to adopt the coping skills necessary to conform to a society that is clearly not yet ready to accept them.

We need to be ready and accepting because these little girls, believe it or not, are growing into young women with depression and eating disorders and multiple suicide attempts.

Isn’t this unacceptable? Do you feel as a part of society that these girls and women deserve a better chance of succeeding? Help them succeed and accept them for who they are instead of ignoring the obvious. Girls have autism, too.

Autism: It Isn’t Always What You Think It Is 

We live in a world where image is everything. We seem to want to SEE much more than we want to read, listen or do. So much so, in fact, that more and more comments on my Facebook page are now animated images in the form of gifs rather than written comments. Pictures say much more than words can at times. 

That’s why I wanted to share this picture of my son.

This is a very typical, everyday image of him. It shows him struggling to do a simple action that others take for granted. It shows him physically struggling to move on from an everyday activity.

My son has great difficulty with transitions. He really struggles to move from one thing, one activity or one place, to another. In the photo, he could not climb out of the car and into the house because something was causing him huge stress. He stayed like this for almost an hour.

It is something people rarely talk about with autism.

When I see pictures of children with autism, there tend to be toys lined up or a child playing on their own or even (much to the upset of some) a child in meltdown. Memes and awareness materials talk of children having meltdowns because there are no chicken nuggets left, or asking shops to turn music down and dim the lights for an “autism friendly” event, and so on. What about the people with autism who can’t get out of the car to get into the fast food restaurant or the supermarket in the first place? 

The latter is much more my reality with autism.

We see people with autism portrayed on television as perhaps adults with fixations who talk about these fixations over and over again, much to the “amusement” of others. Sometimes we may even see autism portrayed as a child being excluded from school for bad behavior, or a family in the newspapers pleading that a certain food should be retained by a manufacturer because it is all that their child will eat. Meanwhile, my son with autism cannot speak a word, has to be carried into his school transport kicking and screaming, and would eat anything put in front of him (including inedible items too!).

The way that autism manifests in each individual is very different. There is no one size fits all. There is no “right” school for everyone with autism, and neither is there really any such thing as true autism-friendly events or clothing ranges. Why? Because what one person with autism hates, another may love. What one person with autism needs may be of no use at all to another person with autism.

So, what is my point? Autism is not what people think it is. There are so many things my son struggles with that people keep telling me “that’s not his autism” simply because it is not THEIR experience of autism. I have been corrected by so many well-meaning people over the years when I state that my son has severe autism and learning difficulties. People will argue with me that the fact he cannot count or read or write is unrelated to his autism. That’s because they have an idea what autism is and my son does not fit into that mould.

Which brings me right back to my photograph.

I live with a child who cannot go from one room in the house to another without screaming. He cannot leave the house without having to have a long list of objects with him, including his iPad. Getting in and out of a bath is a huge issue. Helping to change his pyjamas to clothes and vice versa involves me being attacked and screamed at. Not getting to sit on “his” seat is a disaster that takes weeks to recover from. Having the wrong thing on his breakfast plate is like starting a world war. Someone visiting is a trauma that we can never seem to manage to prepare him for. Unexpected gifts, the doorbell going, the phone ringing…they all cause him hysteria.

Everything is a huge struggle for my son. Dimming lights and turning off music is great for some, but he would never make it out the car anyway so it makes not one difference to my boy. Asking people to be more tolerant of a child in McDonald’s is great too, but I have long since learnt that the drive-through is all we will ever be able to manage.

I am not sure how people could really be more “aware” of people like my son. To be honest, we are housebound most days anyway, so people don’t see our autism.

Which is the reason I took this photo. And the reason that I am writing this.

I guess I just want people to realise that you can have as many autism-friendly Santas at Christmas as you want, but it still won’t help me or my son.

It would take him an hour to get out the house, another hour or more to get out of the car, and an incalculable amount of time before he would even enter a new building, let alone visit Santa.

Don’t stop being aware of others with autism. Don’t stop trying to be more inclusive. Just please remember there are some with autism who struggle with even the very basics in life. There are some with autism who can’t even leave the house. Just because you won’t ever likely see it doesn’t mean my son’s autism doesn’t exist.

How We Hide Our Autism

If you are the parent of an Autistic child, I’m going to introduce you to a concept that’s going to scare the pants off you: Your child is going to grow up to be me.

I am an Autistic adult.

Some people are of the belief that you can grow out of Autism, or that with the right support and interventions, Autism can be cured or lessened. If you’re one of those people, then I’m about to blow your minds with a second concept:

Nobody grows out of Autism and a child cannot be trained out of it. We just get better at hiding it.

Some of us have help hiding our Autistic nature and traits, through ABA or other interventions. Those of us who went undiagnosed learn to do it ourselves. It’s called Masking.

Masking is exactly what it sounds like: We put a mask on—a Neurotypical one.


I notice the music thumping before I even get there.  

I walk up the path and ring the doorbell, hoping nobody will hear, so I can slip away unnoticed. But, of course, they hear.

The door swings open. Light and sound explode outwards in my face, forcing me to take an involuntarily step backwards.

The switch flips, the mask drops down.

“Hey, how are you doing?” I ask as I push in. I can already feel the real me slipping away, the script held firmly in the forefront of my brain.

I shrug off my coat and pass it to the host, remembering to give them a winning smile. I don’t know what I’m going to win with it, but it’s there anyway.  

A shake of the hands, trying not to die internally as my whole body wants to seize up, run away and scream at their touch, fire lancing from my palm, slamming up my arm and setting alarm bells off in my mind.

They gesture down the hall, so down the hall I go. The thumping of the bass is making me bounce on the crumb-littered carpet, the cacophony of voices merging with the shrill Christmas music, blasting out of the speakers. Everywhere is light and bright, the twinkle and sparkle and flash irritating my eyes and making my head spin.

I deposit myself firmly in a corner, clutching a drink handed to me by the host. People talk to me but I’m separate from myself now, helicopter viewing.  

Watching myself mutter and mumble painfully, not even hearing what the other person is saying; Screaming at myself to get out, to just leave, to escape into the silence of the night, the darkness. To get home where it’s safe.

Except I don’t. I can’t. 

 I’m masking and performing.

Happy Christmas.


Those of you that have young children who are fine at school but melt down at home have already witnessed it, as they are the ones who are especially good at it. Conforming at school is masking.

All day we “pretend” that we are NT. We make eye contact, a bit of small talk; we certainly don’t stim or fidget. We contain ourselves and outwardly make it appear that we are everyday people, doing everyday things.

Some of us take off the mask when we get home; those are the ones who melt down when they get home from school and you can’t figure out why.

There’s a reason for that Meltdown though.

If you can, imagine a day at school when you are Autistic: Hundreds of children, bells ringing periodically, people bumping into you, touching you, trying to listen to a teacher but your brain can’t process it quickly enough, the roar of voices, the ticking of clocks, movement everywhere. It’s a complete assault on each of your senses for seven hours a day without a break or let up.

Then you get home and it’s safe and calm, so you take the mask off. Kind of like shaking a fizzy drink bottle all day, then unscrewing the lid. The fizzy drink explodes everywhere.

Some of us don’t take off the mask; we come home and conform there, too. Whether as a child or as an adult, we lock ourselves into our masks. Our parents, our partners, our friends—none of them see the real us, the way we are underneath.

The biggest issue with masking is that a lot of it is conscious. We are aware we are doing it (once you get to later life it becomes a kind of autopilot), so can you imagine what kind of Herculean effort it takes?

Eye contact, social cues, waiting for the right moment to speak, don’t speak too much, don’t spin, don’t flap, hold it in, try to cut out the noise, don’t freak out that someone is touching you, remember your script, don’t say what you think, read between the lines, don’t be so literal, don’t just scream, focus on the conversation, ignore the six million thoughts running through your head at once.

Can you imagine holding all of that in your head while trying to hold a conversation? Or listen to a teacher? Or purchase something from a shop?

It’s utterly exhausting, both physically and mentally.

There are those of us who went undiagnosed; We Are the Expert Maskers. Some of us have been doing it for so long we run it on autopilot.

We’ve compartmentalised our brains so that we’ve cut ourselves off from that part of it. We aren’t aware of it, but the same huge mental process is burning away. Some of us have even convinced ourselves that it isn’t real, that we don’t do it. But it’s always there, that nagging memorandum that we’re able to tap into it at any time and remind ourselves that we are different, we don’t fit in…

For decades, it’s been the undiagnosed that have suffered. Years of masking takes its toll.

The Worries of an Autism Parent: Different Not More

Yesterday,  a fellow special needs mother, whose son was recently diagnosed with autism spectrum disorder, asked me a question. She asked me if there will ever be a day when she won’t worry. I attempted repeatedly to respond to this question, typing then erasing, typing then erasing. I didn’t know the answer. Who am I to say or know anything about anything? But I especially did not know this. This question has haunted me for the last 24 hours.

I don’t know. I don’t know if there will ever be a day that she won’t worry. The infinite, multiplying questions that come with an autism diagnosis are like rivers that part into dozens of streams that eventually lead only to an ocean of uncertainty. I don’t know. There is so much that I just do not know.

While I do know that my son is incredibly smart, I also know that there is a possibility that he will never be able to fully convey this intelligence to the world. What if he can’t connect with others the way that he can with me? What if he is bullied, taken advantage of, made into a spectacle?

What if he can never ask a girl to a dance, or tell a woman he loves her, or get married, or have children, grandchildren? What if something happens to me? What if it gets worse instead of better? What if I lose him again to another year of regression? What if he doesn’t come back this time? What if he never finds the words that are on the tip of his tongue? What if they stay there forever?

While autism comes with many questions, concerns, and challenges, it also comes with a bold and beautiful silver lining. Autism knows no cynicism, judgement, or cruelty. It knows no greed.

In the same way that my son doesn’t always understand questions, I know that he does not know malice. While my son may face bullying in his lifetime, I can say with confidence that he will never be a bully. While he may not be able to communicate with others as deeply as he does with me, we share a bond that much stronger because of it.

For every word he cannot find, there is a look he gives me that I wouldn’t trade for the dictionary. He may not respond to “I love you,” or give kisses on demand, but when I do get a kiss from him, there is not a kiss more genuine in this entire world. We face daily frustrations trying to communicate with one another, but after the confusion settles, and I am finally able to interpret his request, the look in his eyes is one you will see nowhere else. It is one of pure connection, gratitude, and contentedness.

While it may be difficult for me to explain to him concepts like time, for example, such as waiting for dessert or being patient through commercials, he knows a presence that I will never know. He knows the present moment in a way that we all should envy. While I may have to worry about him having a future career or marriage, I highly doubt that I have to worry about him embezzling, having affairs, or fighting with his brother over their inheritance. I may have to worry about the way the world treats him, but I do not have an ounce of concern over how he will treat the world.

There is an irony that come with autism. It is as if the gene that aids in communication, speech, and sensory intake lends itself to more important and fundamental human features. Just as our hands and feet get cold when our bodies choose to keep our blood closest to our most vital organs as a means of survival, it is as if autism chooses to pool its energy into the most valuable and moral aspects of humanity, while willingly sacrificing the priorities of the neurotypical brain.

In other words, what is important to us as a culture is not necessarily that which is most valuable to our species. Society looks at autism and sees a deficit, when in reality the real deficit is in our own neurotypical thinking. It is typical for parents to worry over their child’s future career and marriage, rather than staying up late, tossing and turning over their child’s future character and moral fiber.

While I still don’t know if there will ever be a day that this fellow special needs mom does not worry, I would bet that there will be a day when she cries tears of joy over a miraculously met milestone that she never thought she’d see, while on that very same day a different mother will cry tears of disappointment over her neurotypical child’s deceit or corruption. The point is, life is a trade-off. None of us are spared the worry we feel over our children and their futures.

The satisfaction found in parenting is not driven by college degrees and six-figure salaries. I know firsthand that those things do not bring happiness. As a parent, adjusting to an autism diagnosis means adjusting our expectations of what truly matters in this life, and aligning them with what is, perhaps, a more altruistic perspective. So while our children often need help adjusting to the world they live in, so do we. We also must adapt our conditioned brains into recognizing what is truly worth worrying over at the end of the day.

The satisfaction found in parenting any child is found in the pride we feel when we see our children do the right thing, tell the truth, help another person, accept others, and just love us back unconditionally. Today, I am not worried for my son in any of these areas; he shows me every day how to be a better human being. And while my neurotypical brain has convinced me over the years that things like eye contact and sarcasm matter, my heart tells me that character and authenticity are what really count in this lifetime, and if that’s the case, I’ve got a lot less to worry about than most people.

So, to try and answer my fellow special needs mom’s question, there are many things I still do not know, and a corresponding worry for each unknown variable in our life’s equation. I will probably worry about my autistic son every day for the rest of my life, just as I will for my neurotypical son. What I do know is that my worries are no more or less than those of any neurotypical parent. Allistic or autistic, that’s being a parent. The worries are merely different. And if our children have anything to teach us, it’s that “different” can be so much better than anything we ever could have planned for.

Why It’s Actually Not Selfish to Take a Holiday

A long time ago, when my views on life were less complex and everything fit into a box, I was horrified to hear that parents went away without their children. After all, why on earth have children if you are going to continue with your life pre-children and not involve them in absolutely everything?

That was before a divorce and before autism entered our lives. That was before I realised the struggles that people have in this generation; juggling work, relationships and parenting. That was when my narrow-minded views allowed me to judge other people’s lives without truly understanding much about mental health.

Being a divorcee with a child means that I’m afforded time without my son. Initially, it meant I could work a night shift without exploring other avenues for childcare, but I never really got any downtime. That period ran simultaneously alongside a diagnosis of autism, and I’m not going to flower it up–it was bloody hard. I spent days running on empty, managing night shifts and a child with a variety of needs. Seemingly, sleep wasn’t one of them. Social media forced me to believe that I needed to be everything to everyone and the child comes first. Without question, my son is at the forefront of my mind just about every waking and sleeping hour, but I neglected myself and my own well-being and that inevitably impacted my ability to parent Joseph effectively.

It was a hard lesson to learn, but I have tried to correct that. I have made time for myself and other people, and allowed myself not to feel guilty for unashamedly being me in my own right and not just Joseph’s Mum.

Over time, I have managed my and Joseph’s time together more effectively, and taken advantage of the time he has with his dad. There has to be some benefits of a divorce, right? I have nights where I do all the things I haven’t been able to when Joseph’s around. I have nights where I do very little and take myself off to bed early to catch up on some much-needed sleep.

But there are also times when Joseph is with his dad for a couple of nights together, or he takes him on holiday for a week, and that’s when I put my heart and soul into planning “me time” or time for my current relationship. I tie myself in knots deciding what I want to do. Do I want to do 32 things in two days or do I want to just relax in the sun and chill? I want it all, obviously.

So when I hear the words “you’re lucky to get time away,” it saddens me. I don’t consider myself particularly unlucky, but I know what it has taken to ensure this time happens and the planning involved to make it run smoothly for all of us. I know what I deal with every day as a parent of a child with additional needs and would consider the words a poor choice.

I’m well aware of parents–not just parents of children with additional needs–who do not get that respite and I know that may be for a variety of reasons: choice, nobody to assist or guilt. Society expects so much from us and we place too many expectations on ourselves.

It’s not easy to shut off when you are away, as you naturally worry for that child who you PA for, not just provide personal care and wonder whether anyone else can do it to the same standards. What I’ve found is, they actually can. How does Joseph cope? Marvellously, and he looks forward to his “holiday” time too, which removes some of the guilt and gives me assurance that he is not totally reliant on me. When I return, do I get a massive hug and him telling me that he has missed me? Absolutely not, he treats me like he saw me the day before in his usual offhand manner!

So whilst I have the opportunity, long may this continue. I don’t need to justify myself or feel that I’m lucky, but I would like people to read this and feel empowered to do the same.

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.