Melissa Cote

My Child Is Different, and So Am I

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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 depression—one 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.”

Angela Conrad

A Letter to the World About My Autistic Son

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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.

Tina Medlock

The Dreams I Learned to Let Go

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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.

Angela Conrad

Three Things I Am Tired of Explaining About Autism

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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.

Miriam Gwynne

The Reasons I Don’t Like to Eat

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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:

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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.

Jeannette Cripps

The Fear: What Will the Future Bring?

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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.

 

K.M. Hodge

An Autism Mom’s Feelings About Grief

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“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.

Tina Medlock

The Autism Community: A Community of Strength

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When my son was first diagnosed with autism, I enrolled in workshops that would give me valuable insight into a condition I knew very little about, but I rejected the support of the autism parenting community.

I didn’t want to hear what they had to say because my only taste of it had been a bundle of negativity. I couldn’t cope with that as I had plenty of my own I could pass on. I wanted to hear stories of hope and stories of courage, and I feared that I wouldn’t find it there. Don’t get me wrong: I didn’t want false hope or lies, but I needed to find people on my wavelength. Deep down, I knew that might be an impossible task given what my wavelength is.

I learned to find my own way and some of that was to my advantage. I relied on my own innate parenting skills to muddle through the challenges of parenting a child on the spectrum.

Along the way, I’ve learned an awful lot about myself, and I’ve also learned how to choose my battles wisely and increase my patience (some would disagree). Most importantly, I’ve learned that my way is not the only way (though some would argue I’ve not mastered that one yet).

As time progressed after Joseph’s diagnosis, I became more confident in my own knowledge. I didn’t necessarily believe everything I read and I felt more comfortable looking to the community for support and guidance. I saw that people had different beliefs and strategies for dealing with their autistic child. I saw that some believed their child was a blessing, whilst others struggled to comprehend why they had a child with autism. I saw people debate over what they perceived to be the correct use of autism and autistic, and I enjoyed reading different takes on the subject.

What I didn’t expect was that some people would view it as an opportunity to criticise and attack other people’s views and life choices. I’m not sure whether it’s because it’s easier through social media, but I doubt very much that the comments being made would be made face to face.

Our children’s autism journeys are unique, and we try and raise awareness globally by educating others that there are lots of different facets to autism. Why is it so difficult to accept that we as parents are unique too; that we do not all parent the same and we all have different experiences?

When I started writing my blog, I dared to push my head above the parapet and say the things I wanted to hear so many years ago when I was first looking for advice and help. I wanted to be able to feel comfortable saying that acceptance was hard and that there were days I wanted to kick the shit out of autism for the challenges it brought my son. I did not want to be vilified for owning up to those thoughts and I wanted others to know that they were not alone.

None of these thoughts make me love my son any less; they actually make me love him more, if that is even possible. Every single one of us wants what is best for our child, we just try and achieve it in the way that works best for us.

Let us learn from each other and accept and embrace our own differences, not just those of our children.

We are all striving for the same destination—let us gain strength from each other.

Rachel L. MacAulay

Life With Autism: Richard Mylan & His Son, Jaco

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Welch actor, Richard Mylan, talks about raising his autistic son, Jaco, in a recent BBC documentary.

They’ve both come a long way since Jaco’s diagnosis. Richard, who didn’t want to talk about it at first then found that when he did talk about it, nobody really understood. People thought he was in denial, and even deluded, about his expectations for Jaco. But Richard believes you can’t put a limit on a child, and especially a child with special needs.

And he’s learned to just let Jaco be, to talk if he wants to talk, to just exist quietly if he doesn’t want to talk. “All I needed to do was work out what life on his terms was, and live it with him.” Watch below.

Rachel L. MacAulay

She Has Non-Verbal Autism, But Her New Friend Understands Her Just Fine

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If you have a non-verbal child, chances are you know how hard it is for them to make friends. That’s why we know you’ll love this video.

The mother of Carly Jade, a 6th grader with non-verbal autism, took the video at a local Chuck E. Cheese after she saw the way that Carly Jade interacted with her new friend, Zoe. Zoe is neurotypical, but seems to have figured Carly Jade out. As Shannon, Carly Jade’s mom, explained in her Facebook post:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she’s often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her..

So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed!

We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

We’ll let this wonderful video speak for itself:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she's often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her.. So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed! We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

Posted by Shannon Sommers on Tuesday, May 23, 2017