If I Could Grant Three Wishes for My Autistic Child

When I we were expecting Baby No. 2 and I found out that she was a girl, I was so excited. I already had a son and a stepson, so I was well outnumbered. I dreamed that my daughter would become my best friend. I pictured us doing mommy-daughter things together: shopping, pampering, afternoon tea, girly days out and heart-to-hearts about friends, boyfriends and life. I dreamed of a wedding, grandchildren…

And then we learned she is autistic, and all those hopes and dreams felt as though they were slipping away like grains of sand through my fingers.

Suddenly, the future for our daughter was unclear, blurry, foggy. Dark. We had no idea what she would and wouldn’t be capable of, and what life would have in store for her.

I was blinded by the diagnosis. What I had failed to realise, in those very early days, was that I could still have hopes and dreams for her, and for us, but they would just be different than the wishes I had before. These are my wishes.

Wish #1: I wish for her to be educated in a way that means she can get the most out of her school days. I no longer dream of her going to university or having a great career (although either could definitely still happen!). I don’t mind so much about academics, although I would love for her to read and write (even if that means “writing” with an iPad instead of a pen).

I really want her to learn the things that mainstream schools do not focus on as much. I want her to learn social skills—she needs to be taught, rather than just picking skills up through interaction and experience. I want her to learn about the world—not geography, but her world—and how to live in it. I want her to learn independence so that, one day, she might be capable of living away from us.

Wish #2: I wish that she has friends and leads a happy life. She is already popular at Nursery, with other children keen to talk and play with her, but she isn’t yet able to respond to their interest. I hope that, in time, she will be able to form meaningful friendships with people who “get” her. Maybe she’ll even find love.

As long as she’s happy, I’ll be happy. I don’t want her life to be a struggle, and I hope that we can arm her with the ability and vocabulary to express to us if it does become difficult, so that we can help.

Wish #3: I wish for her to be accepted. Society, while making great strides in recognising the needs of autistic people, still has a long, long way to go until being autistic is no big differentiator. I hope that by the time my daughter is an adult, being autistic isn’t even a “thing”—it’s just another way of being.

I hope that the accommodations some businesses and places make now are commonplace all over and that everyone working in a public-facing role has at least basic-level autism awareness training. I would hope that this knowledge and understanding would spread so that everyone knows more about autism, and our autistic loved ones are treated with the kindness, respect and care that they deserve.

I don’t think these wishes are unrealistic or unachievable. And, who knows? She may end up married and with a family and a fantastic career of her own one day. But, whatever happens, I do know that she will be my best friend and I will do everything in my power to make sure she’s happy.

Instead of the blurry, dark future I feared when she was first diagnosed, I have come to realise that she is the light, and her future is bright.

Autism and Behavior: Am I Making Allowances or Excuses?

Harry was born with a very rare craniofacial condition and so, right from the beginning, we knew life would be different for us—both from the one we had imagined and from the lives of our friends.

As Harry is a twin, it was natural for us to compare his development with his brother Oliver’s. However, unlike a lot of parents, it wasn’t the delay that we noticed first.

Harry taught himself his letters and numbers way before Oliver, thanks to his electronic phonics and numbers boards. Although he couldn’t tell you, he would always choose the right answer when you asked him to select a letter or digit. He was fab. He also taught himself how to play the piano from around age 2 1/2. Of course, we know now that the familiar and ever consistent sound made by the same note means that Harry’s autistic mind hears a predictable pattern, whereas Oliver only heard noise. I was so proud!

In time, we came to see the typical signs that would lead us down the road to assessment. Harry rocked and flapped constantly, wouldn’t interact with other children at all, and was obsessive about certain items or toys. He had high scores in each area of the “triad of impairment” and at just age 4, he had his diagnosis of autism.

The diagnosis itself didn’t change anything for us as Harry had already just started at special educational provision, but it did mean that we were more aware of his behaviour and reactions and tried to explain them within the context of his new diagnosis.

Over the past 11 years, Harry has endured some huge operations to correct the shape and formation of his skull and palate. It’s impossible not to make allowances for his negative reactions to the doctors and hospitals, which he has feared, but something struck me lately when I noticed a change in him.

When telling Harry that he was going to the hospital, he used to get extremely upset and nervous. Now, he laughs and replies with “Yay! Vtech toy!” Why? Because we have positively reinforced his experience with a trip to a local toy store after each operation and procedure. We justified it as his treat for being so brave, and although it’s true that he was incredibly brave, we ended up creating another expectation and habit that is now very hard to break.

How many of his quirky autistic habits have been unwittingly created by us? And how much of his behaviour do I make allowances for by explaining it as part of his diagnosis? Here are a few examples to consider:

Harry has phases where he bakes his toys in the oven when I’m not looking.

My explanation: It’s because he’s seen me cooking or has been doing cookery at school and is taking an interest in it himself.

Another possibility: He remembers my scream from the first time and just finds it incredibly entertaining to wind me up.

Harry has started to kick out at the dog for no reason and without warning.

My explanation: He doesn’t like how unpredictable the dog is and he doesn’t like the texture of his fur, so he feels scared when the dog’s around.

Another possibility: He simply doesn’t like the dog!

He has a meltdown.

My explanation: He could be in pain, overtired or experiencing sensory overload where we are at that time.

Another possibility: He’s tired and grumpy and unable to tell me why. He’s had enough of being there or doing what we are doing and wants to go home.

He lashes out at Oliver and hits or punches him sometimes.

My explanation: He’s trying to interact and loves Oliver the most, so he focuses on him sometimes.

Another possibility: He’s just having a moment where he’s feeling particularly mean and is taking it out on his brother (like I did as a child with mine and many other siblings do).

I’m not trying to trivialise these aspects of autism at all, as they are significant challenges for our children and us as parents. But I’m just thinking out loud and I feel that I have as much a responsibility to question my own responses as I do to consider Harry’s actions.

Isn’t it just as feasible that, as well as expressing himself within the restrictions of non-verbal autism, he’s just playing up like any neurotypical child? Where does the autism stop and the child begin? It’s impossible to know.

But when I see him, even in the moments that exhaust and frustrate me, I’m also in awe of him. Of the uncomplicated way he views the world; the way he does what he wants when he wants and is free from how he “should” be feeling or acting; the unconditional love that he gives so beautifully.

So, whether they’re excuses or allowances, I have to wonder: Does it matter? Am I beating myself up and overthinking (just two of my strongest traits) unnecessarily?

Yes, maybe I do make excuses for him when I should be punishing him (that’s not to say I don’t tell him off because I do—he needs to know right from wrong). But I also make allowances for his frustrations and confusion because there are times when, without a doubt, he is responding through his autism. And let’s face it, most of the time I am too busy laughing at his crafty tricks and funny acts to wonder why he’s doing them.

Autism life is fast-paced, full of questions, and peppered with responsibility and big decisions, but never, ever is it dull. And I wouldn’t have it any other way.

On the Days That I Break

I hear him. I can hear him limping around his room. I can hear him cough. I can hear him randomly shouting words—words he once had, words that mean nothing now.

I check his bedroom camera. I zoom in to see if he can wait the five minutes I need to coax my body into waking up. My back is stiff and sore. My neck creaks.

I am 36, so I am pretty sure I am too young to be feeling so stiff and sore in the morning.

My mind tells my body to get up.

My body refuses.

Today is already one of those days.

The days when I just can’t. The days when it takes so much to stop myself from breaking. I know these days well; I have them often.

I know today will be a day that I will break; a day that I will spend counting down the hours until bedtime.

It’s a horrible feeling. It’s a feeling wrapped in heavy guilt.

My child is terminally ill and I have days when I just can’t do it.

Society tells me to relish every minute with my son, for I know what his future holds. I tell myself the same, but some days it’s hard. It’s hard to take the slaps, punches, pinches and kicks, and still find something to be grateful for.

I know I will feel a huge amount of guilt over feeling this way, especially when I can’t hear him or see him or hold him anymore. I remind myself of this and that is the reason I get up: Guilt is powerful.

Just managing to get by isn’t easy or something any parent wants to do when it comes to their kids. But on the days that I break, it’s all I can do. I push the guilt away and remind myself that I am human.

I get up. I go into his room and I clean him and everything else that requires cleaning. He’s happy to see me, but not for long. He doesn’t like to be cleaned, and the wipes, the cream, are all too alien to him despite us having used them for years now.

I get it done and we begin our day.

He is out of routine.

He expects a bus to come get him, but I know that bus isn’t coming for another three weeks. He doesn’t know or understand this.

I watch the clock as I feed him and medicate him.

He lashes out as I clean his peg site. I don’t dodge the slap in time, which means I have a fresh scrape on my face. More explaining to do when I meet friends or family, and even strangers some days.

Once, a woman very kindly handed me a card when my husband wasn’t looking. It was for an abused women’s home. She presumed my husband was behind my black eye and scraped face. My husband is a big man who is used to getting the evil eye from random strangers when my face cannot be hidden behind makeup.

Some days I break.

I want to run away and not come back. I don’t want to do all the caring. I want to stay in bed and pretend my life is just like yours.

People tell me that at least I don’t have the future worry of what will happen to Ethan once I am gone. They are right—I don’t have that worry.

I worry about what will happen to us when my son is no longer here. How will that feel? Will I be able to look at myself in the mirror then, knowing that there were days when I wanted to run away from everything, including him?

For me, autism is very different from the shows we see on TV. For me, disabilities are very different from the shows we see on TV.

Our life with Autism is violent.

Our life with disability is heartbreakingly painful, as we watch our son lose each and every skill he ever had.

So, yes, I have days when I break. Days when the world I live in is too much for me. Days when I want to run. Days when I wish for a different life and days when I am angry at the life I have.

Am I ungrateful? I don’t know.

Are there worse situations out there? I am sure there are, but that doesn’t make my situation any easier.

I think society puts us parents on a pedestal by saying things like “I couldn’t do it” or “I don’t know how you do it.” The truth of it is, as well-intentioned as those types of comments are, they often make me personally feel like I am not doing it. Because there are days when I break, days when I just can’t, and days when the only thing that gets me up is guilt.

I think that the only way parents like me can change this view is to be honest, be open, and admit there are days when we just break.

And it’s OK.

It’s OK to feel like running away.

And it is OK to tell society the harsh truth about being a parent to a child with a life-limiting condition or autism or Down syndrome or any other disabilities or challenges.

My Child Is Different, and So Am I

My child is amazing—truly freaking amazing. She is everything that I want to be. 

 When I’m tired and I think that I can’t possibly push through even one more day, I look at her progress and I force myself to push on through. On days when I feel like I can’t even get out of my own bed because of depression, Zoey mentally pulls me out. I struggle with major depressive disorder, anxiety, panic disorder, complex PTSD, and fibromyalgia, but I can’t just stay in bed—I’m a mom! 

One day in August, three years ago, my husband and I drove two hours away to have a specialist confirm what we had already suspected…autism had chosen our child.

Getting any kind of diagnosis is a shock and nothing prepares you for it. If you think you are prepared, well that preparation crumbles in the wake of a specialist looking at you and telling you that there’s something wrong. 

When it comes to your child, the last thing you want to hear is that there is something wrong. You don’t want to be handed pamphlets and told to find a support group. They looked at us and asked us, “Do you understand what we just went over with you?” We shook our heads “yes,” but we were obviously in shock, because we couldn’t possibly understand what we were in for. 

We were then escorted out the door and shown where to get the elevator. In that elevator, I looked up at my husband, who was holding onto our almost two-year-old daughter, and I asked him: “What do we do? What happens now?”

He replied, “It changes nothing. She’s still our happy child.” 

I tried to accept that and believe him as he said it to me, but the diagnosis did change everything for me. I stayed up every night researching, blaming myself, even blaming my own illnesses, what had I done wrong. I cried, sobbed, grieved. I got angry, and I spiraled into another bout of major depressionone of many in my life. 

These emotions of sadness, fear, and anger, well, they lasted for more than a year for me. Even on the days that I had thought I had settled with those emotions, they came back looking for more from me. It was a vicious, emotional cycle of tug of war that I was really tired of fighting, and I realized that I needed help.

So, I started seeing a therapist. Soon I stopped fighting those emotions and instead released them. I stopped blaming autism for choosing my child and I stopped the love/hate relationship that I unknowingly had with autism. 

I realized I was discriminating against autism—not my child, but her autism. I was treating autism wrong and making it into something scary… Why, because autism is different? I’m different; we are all different. 

What’s more, I learned that by talking about my daughter’s autism, it made it feel okay for me to talk about my mental illnesses. I realized different can be scary and we can be afraid of the unknown, but everything and everyone deserves a chance to show you just how beautiful different can be. I tell my children that just because someone or something is different, “Different isn’t bad.”

Zoey’s autism saved my life! I know it sounds silly, but it’s true… Autism saved MY life. 

If not for Zoey’s autism, I never would have woken up and embraced my own illnesses. I wouldn’t be the mom I am today; not just for my kids, but as a person. I became Zoey’s voice when she had none, her advocate when she needed one, and always her mommy who loves her. 

In being Zoey’s voice, I found my own voice. In helping to fight for Zoey’s needs, I learned to fight for my own needs. Getting Zoey’s autism diagnosis helped me understand my own diagnoses. Something inside me woke up and I realized autism doesn’t discriminate and that no one should discriminate. By talking and sharing, maybe we can end the stigma surrounding “differences.”

A Letter to the World About My Autistic Son

Dear World,

Have you ever been so excited about something and you never thought the day would come?

All I ever wanted to be in life was a wife and mother. I couldn’t wait to have babies. Needless to say, I was stoked when I found out I was pregnant with my now seven-year-old little boy.

Truth be told, he is one amazing little guy. Let me tell you a little about him.

Did you know that he could spell words by the age of 2 ½?! Amazing!

He has a smile that can brighten anyone’s day. I love the way he smiles and claps when he watches “Elmo’s World” and “Baby Einstein.” He watches the same exact parts of his favorite episodes over and over daily.  The. Same. Exact. Parts. That is no exaggeration!

When he does something good and is praised, he is on Cloud Nine and claps to his own happy noises! He loves it when he makes his mom happy.

He doesn’t communicate like you and I do. Communication is actually very hard for him. For years he cried and had meltdown after meltdown because he could not communicate. Now, he has an AAC device and we are slowly learning on it.

He has an amazing sense of the world around him. He doesn’t act like he is paying attention, but he is. He may not look at you, but he knows what you are doing.

He has a photographic memory and rarely forgets anything. In many ways he is smarter than the average seven-year-old.

He tells me he loves me in several different ways without words because he can’t speak the words. How do I know he loves me? Well, he touches my hand and pats me. He smiles when I pick him up from school and therapy. He has this amazing “happy” noise that flows out of his mouth and I melt every time I hear it.

He speaks to me through his eyes as well. He rarely makes eye contact with me, but when he does, he speaks volumes. No one else would ever understand this type of language and bond.  It is quite amazing to experience, so don’t be jealous!

He has the most amazing ability to run effortlessly. It’s a dangerous talent and leads to elopement and wandering. However, when I get him in our backyard, he can run for hours on end and never gets out of breath. He loves to run and move. He needs it, truth be told, and we make sure it is coordinated into his daily schedule and routine.

Oh yes, the trampoline. He jumps for hours on end—seriously!

I have never seen a kid love McDonald’s chicken nuggets as much as he does. Chicken nuggets, pizza, and fruit rollups are a few of his favorite (and only) food items. He eats them for breakfast, lunch, and dinner.

My son is an astonishing little boy. He sure makes life interesting. He didn’t sleep for years and only recently has become able to manage all the sensory input from stores and restaurants. His mind and body are fascinating.

He may be a little different than your child or anyone that you know that’s his age. When I became his mother, our life changed and it changed dramatically. In-between all the quirks and chaos of our life, he battles the effects of severe autism daily. We have shed countless tears and gone through much heartache together. I could preach for days on his challenges.

But, instead, I wanted you to know about the amazing little boy that he is and how much joy and sunshine he has brought to my life and the lives of everyone that knows him. He doesn’t let autism define him; instead, he shows the world how awesome autism can be.

The Dreams I Learned to Let Go

Even before my son, Joseph, was born, I had made a handful of plans as to what he would be. He would be funny, smart, almost certainly athletic, and he would undoubtedly have a successful job.

The day of his autism diagnosis at age 3, those plans were wrenched away from me with just the mention of the one word.

Autistic.

He was non-verbal and still not toilet-trained. How would he ever achieve anything? He was autistic. I plunged into a depression where I just couldn’t see the tunnel, let alone the light at the end of it.

Autistic meant that he would be unable to succeed. Life would be full of challenges that would be difficult to overcome. Who would love my son? How would he ever learn anything when he barely understood anything?

Although I knew that autism was a spectrum disorder, I hadn’t quite realised how wide that spectrum was. I had only read about two extremes: people who were non-verbal and had issues accessing the world around them and people who were high-functioning and could articulate their difficulties, go on to form relationships, and secure employment. Joseph appeared to fit in between those extremes, which in some respects made the future seem so much more uncertain.

There wasn’t a lightbulb moment when those feelings changed for me—it was a gradual process. His communication developed and he eventually started using the toilet. He began hitting some milestones, albeit later than his peers, but he still hit them. I heard stories of people who were non-verbal and still became scholars with university degrees and I became hopeful. I was frightened of setting expectations too high, but I decided that I would give Joseph all of the opportunities he needed to succeed.

I realised that success is not necessarily measured through exam qualifications, but through more subtle achievements. We celebrated a successful shopping trip. We high-fived when he walked out with confidence in front of the whole school and participated in a dance with the rest of his class. We cry with joy when he initiates a conversation and doesn’t just imitate spoken words.

I still don’t know whether he will find love within a relationship. I have no idea whether he will remain within a mainstream school environment or be capable of living independently. What I do know is I will look back and have no regrets about the opportunities I provided him with. As a parent, my difficulty lies in trying to predict the future and determine the end game. But, after all, nobody can ever know that.

Your child being autistic doesn’t mean you can’t have dreams—it just may take some readjustment of your expectations. We still set the bar high for Joseph and encourage him to reach for the top, and he will always have our constant support along the way.

I believe in him and I believe in my ability to be the advocate he needs.

Three Things I Am Tired of Explaining About Autism

Not again, I thought to myself. 

Did they just really ask me this? Here I go again, I said to myself with a plastered smile on my face, trying to hide how cranky their comments made me. I know exactly why they ask such questions or say the kind of comments that they do. It’s simply because they can’t understand my child’s behavior and why we do the things that we do.

Being an advocate can be very monotonous. At times, I feel like I explain the same things repeatedly. And even after I go into great detail, I get the same baffled looks. It leaves me exhausted, irritated, stressed and angry. It’s exhausting having to repeatedly explain your child to people. I often leave a situation all calm and collected, and then release my built-up frustrations later. After all, a person can only explain something so many times without getting a little grumpy.

Are you wondering what I get asked about my son’s behaviors? My list is somewhat lengthy, but here are the top three things that I am tired of explaining.

1. Every child with autism is different.

There is not one family who has the same journey. So, please stop making comparisons among children with autism. I often find myself in a conversation and the person will say something like, “Well, I knew a woman who had a nephew with autism and he just started talking when he was four. So, your son will too.” Or something like, “A kid who has autism and lives across the street from me was put on a special diet by his parents and now he is just fine. I bet if you try that, Trenton will be too.”

UGH! Nothing can be more frustrating than trying to explain to people that what works for one child/adult with autism will not necessarily work for everyone. When I explain that I tried what they just mentioned and it didn’t help my son, I get the most confused/blank look back.

“How can that be?”

“It’s just autism,” I say, and I leave it at that.

Inside, I am screaming and angry and feel judged. I often feel like they don’t believe me when I say that I have tried and done almost everything, but my son isn’t like the person they know. It’s autism, folks! No one is the same and not one story is the same!

2. Yes, he does look ‘normal.’ Looks aren’t everything.

I know, I know! I hear this one a lot. My child is handsome and adorable, and has the cutest smile in the world. Therefore, he looks “normal” to strangers—it appears that there is absolutely nothing different about him. However, don’t let his looks dictate to you whether he has challenges.

He has many mountains to climb daily, and always will. My life has been forever changed because of his challenges. He may look like the boy next door, but we definitely walk to the beat of our own drum in this house, and we always will.

3. He’s got sensory issues.

Trying to explain the sensory problems that accompany my son’s autism is one of the hardest things to do. “Oh, your son can’t brush his teeth? But, why?” People look at me, expressionless, trying to grasp how a child who looks “normal” can’t brush his teeth because of sensory problems. I always go further, too, explaining that nail trimming and haircuts are impossible unless my son is asleep or held down. The look on their faces when they hear that is priceless!

It is hard to manage not only these types of conversations about autism, but many others as well. I do my best to get through them pleasantly while I am dying a little on the inside. Just when I think that I won’t have to engage in another tedious conversation explaining my son to someone, I find myself right back in the same exact conversation, but with a different person. It’s exhausting.

The Reasons I Don’t Like to Eat

We asked Naomi, the autistic daughter of blogger Miriam Gwynne, to try to write something for our community that would explain why she doesn’t always like to eat, and what causes her to not like certain foods. These are her words:

————————————

Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like “Are you hungry, Naomi?”, “Would you like a drink, Naomi?”, “Are you sure you don’t want a snack?”

Why do people eat and drink so much, anyway? I have things I prefer doing, like watching YouTube and playing my own games with my toys. How am I meant to eat or drink when I am doing something else?

Sometimes people even want me to change rooms to eat. School does that. Why? I am comfortable and happy and then they make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What if someone touches something?

Those things scare me.

You want me to move to some place, sit down, and eat what you have made. But I didn’t ask for it. I did not know it was happening. No one told me I would smell different things, hear different voices and touch different stuff, and now you even want me to taste things?

It is too much, so I just freeze.

I can hear you, but everything is fuzzy.

I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour, like a light brown sort of colour. If my skin is OK then things that colour are OK, too.

But do you want to know why I still sometimes don’t eat things that are my skin colour? Well, it is just wrong. And my brain is all upset about food. When I play with my toys, they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice; it is the right colour and it feels nice and soft in my mouth.

But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness, and I get upset. You ruined it. Why do people do that?

I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order, it makes sense. I want to know it is “right” and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing, then another. My brain tells me “this is nugget skins” and I remember what they taste like. You damage it if it has sauce or potatoes on it. Then it is not nugget skins, but some weird thing my brain does not know. So, all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes, I get a little tiny bit to swallow, and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes like teeth, not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavor, do they?

I feel sick sometimes. Mummy says it is hunger, but I don’t get it. My tummy makes me feel sick and people say it needs food, but it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad: Please leave me alone. I like it best when mummy puts things I like near me when I am playing, so my toys can look at it and tell me it is OK. I know my world is OK then.

All day long people eat, eat, eat. And I get scared, scared, and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas the Tank Engine is brilliant. He never eats, and I like that.

The Fear: What Will the Future Bring?

Do you feel it sometimes, the fear?

It can creep up at any time, envelop you in its proverbial black cape, and stay there, making you think and worry, fearful for the future.

I’ve been thinking of this since our daughter turned 13 in May. She received her autism diagnosis at 4.5 years, so she’s been defined by this “label” longer than she hasn’t. Scary, eh?

The last few years have gone by in a flash, and she’s heading into year nine in September. Nine will turn into 10, 10 into 11, and then what?

She’s very lucky to be in the right setting for her. It became very apparent that mainstream wasn’t appropriate for D, and once we’d appealed against a statement rejection and had a successful appeal, we were able to get her into SN school within a term.

It felt a tough decision at the time: Do we “stick” with mainstream, recognising that D was finding it all way too challenging and hope for some sort of qualification at the end of a (angst-ridden) time in mainstream? Or do we go with our hearts and choose an SN school, with its smaller class sizes and its focus on “life skills”? It was an easy decision to make after deliberation—we wanted our daughter to be as happy as she could be, and anything else would be a bonus.

And she is—more than is. We listen with absolute joy as she reads, clap as we watch her class performances, and marvel at the fact that she’s there, on stage, when in mainstream she was too nervous to enter a school hall; too full of anxiety to participate in any activity.

But, we know that in a few short years it will all change; she’ll be too old for school. And then, what’s next?

A college placement in a huge sensory-filled building?

What if it all becomes too much? What if she’s singled out? What if someone suggests something and she says “yes,” as she doesn’t have the confidence to say “no”?

What if the bus to college is late and she starts to walk, with zero road sense? Or gets into a car?

What if there’s a job placement and other people don’t understand and accept her?

What if she’s bullied and is told not to say anything? What if it’s a person she perceives as authority? She wouldn’t say a thing, but just twist herself in knots, tighter and tighter.

What if she doesn’t get a job or college placement? What then?

And my biggest fear of all: How will she cope when we’re no longer around? 

At best, she and T tolerate each other. Would they be able to get on (ish)?

I don’t like to think like that, but nobody is immortal. I’d love to be; to always be there for her.

That’s the fear that keeps me awake sometimes.

 

An Autism Mom’s Feelings About Grief

“You can’t stop the tide.”

I told my autistic son this during his first trip to the ocean. The vastness of the water frightened him and so, in his own way, he sought to control it by holding out his little hands and bravely shouting at the waves to stop. We’ve all been there, struggling to get our footing when the riptide moments of life threaten to pull us under.

Never is this truer than when someone you love is dying. This summer, my family is preparing to say goodbye to my father-in-law, the kindest and most hardworking man I’ve ever known. Over the last few days I’ve worried about and watched my sweet boy struggle once more to stop the tide. Except this time it’s the vastness of his emotions that frightens him.

People with autism are so often portrayed as lacking emotions. But my boy is often flooded with them, to the point that he nearly drowns. When this happens I wade through the murky depths of his feelings and try to help him stay afloat. This isn’t easy these days since half the time I feel like I’m drowning, too.

Grieving with a special needs child, like anything else, seems so much harder. The meltdowns, the overstimulation, and the judgmental stares of strangers heighten the moment. Add to that the common struggle of helping your child make sense of something that you yourself don’t understand. I wish I could impart some kind of wisdom to other parents out there that, like me, are treading water in the sea of grief, but I sadly don’t have any answers.

Instead, I want you to know you’re not alone. In the chaos it’s easy to feel isolated. All the things that make your child’s day easier—staying on schedule, eating healthy meals, and having a routine—are nearly impossible in these situations. It’s easy to panic and flail as you frantically try and get some semblance of control over your universe.

It’s OK if you stumble and fall along the way. Saying goodbye is hard and it should be. But it’s important to remember that when you struggle for control, you risk drowning. It’s only when you lay back, trust the water, and float that the tide brings you safely back to shore.