Dave Borden

5 Ways Being an Autism Dad Has Changed Me

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Most guys have a vision of what life will be like when we become a Dad.  We think about teaching our sons sports, helping them with homework, talking to them about girls, and then one day sending them off to college. I remember when I used to look forward to the day I could teach my son to play baseball and take him to games with me.

When autism enters your life, it changes everything. Autism doesn’t simply change the way you parent. It changes you as a person.  Here are five ways being an Autism Dad has fundamentally changed me.

The Not-So-Good Changes

1. I Now Hate Little League
I don’t just hate little league. I hate all kids’ sports. Rather, I hate attending kids’ games. It just makes me very sad. I’m reminded of what will never be for my oldest son, and the things I will not be able to experience with him. He has pretty severe autism, so even things like Miracle League or Special Olympics are out. We tried Miracle League basketball and soccer years ago, but he just ran around, spit at his buddy, and eventually bit his buddy too. I gave up on sports, as it was just too painful for me. The saddest part about it is that he would be so great at it. You can tell he would make a great athlete if autism didn’t rob him of the attention and focus needed for sports.

2. I Can No Longer Relate to Other Dads

One of the hardest things about being an Autism Dad is the isolation. It is tough to meet new people and become friends with other dads. I simply can’t relate to them. I am a stay-at-home dad with three kids, one of whom has severe autism. Most guys like to brag about their kid’s accomplishments or discuss what’s going on at work.  I just can’t build a meaningful connection with other guys now, as we just don’t have much in common. I wrote a whole piece on the loneliness and isolation that comes with being an Autism Dad.

The Good Changes

3. I Am Smaller as an Autism Dad

I don’t mean that metaphorically. I am substantially smaller today, 11 years after autism, than I was when my son was born. As I noticed how different foods affected my son’s behavior, I began to research and learn how food influences all of us. A few years ago, the whole family adopted the paleo diet. I personally lost nearly 100 pounds and continue to maintain that weight loss. If autism never entered my life, I don’t know that I would have gotten the kick in the pants I needed to stop my poor eating habits. I just shared my before and after paleo pictures on my blog if you want to see how dramatic this change has been.

4. I’m a Better Person as an Autism Dad: Patient, Kind, Accepting

I’ve always had confidence in my ability to be a good Dad, but autism has really tested that confidence. It’s shown me patience I never knew I had. Sometimes, it pushed hard and kept pushing until I broke. I’ve exceeded my breaking point many times in the past decade. However, autism has also taught me that it’s OK to fall sometimes, so long as I pull myself back up. It’s built in me an incredible resilience and shown me things I never thought I was capable of.

Autism showed me not to be so quick to judge. You never know what is happening with other people or the situation they are facing. Now, I try to be kind to others even in the face of rudeness.

Similarly, I’ve also learned to be more accepting. Not just of other people, but of autism in general. Through all the bedtime “poopisodes,” all the wet pants, and all the screaming, I accept my son for who he is. I love him so much that words can’t even express it.

While I’ve learned to accept his autism, that doesn’t mean I’ve stopped pushing him to be better. Despite his severe autism, he’s just as capable of improvement. Like all dads, it’s my job as his Dad to push him so that he becomes the best version of himself that he can possibly be, autism or not.

5. I Recognize a True Connection

My son, Ethan, is almost 11 years old, and he has never said the words “I love you, Dad.” That doesn’t mean he’s never said I love you to me. He says it when he looks at me with his glowing eyes and beaming smile. He tells me how much he loves me when he runs to me and says, “Daddy run.” Ethan shows me he loves me when he flops on my lap as I sit on the couch, and when he leans his forehead to mine and says “mwuah” (his way of giving a kiss). Being an Autism Dad has shown me what it’s like to truly be connected to someone with no words required.

Connected Without Words

When times are hard, I always think of this one specific time where Ethan showed me just how much he loves me. It was last fall. My wife and I had gone to the Autism Education Summit in Dallas, and we were gone for about four days. It was late when we arrived back home. The kids were already in bed.

I woke up the next morning, and walked to the living room. Ethan’s back was to me as he was watching his favorite YouTube clip on TV. I remember this so vividly. I said, “Ethan,” and then I waited for him to respond. He turned around and looked at me. He gave me the biggest, brightest smile you could possibly imagine. Then, he ran over, giggling, and jumped into my arms. Laying his head on my shoulder, he wrapped his arms around me and squeezed me tight. It was the first real, spontaneous hug I ever received from him. All the while, we both had huge smiles on our faces.

It’s one of the single best moments I’ve ever had.

 

Jeannette Cripps

Looking Back Now Is Easier Than Looking Forward Was Then

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It was strange, thinking back, how the course of our daughter’s life changed in a moment. A moment that took place in a portacabin, painted with cheery cartoon images, but a portacabin nonetheless.

“Your daughter has a diagnosis of autism.” It wasn’t unexpected, but the tears still flowed as a bundle of leaflets were passed to us, together with a box of tissues.

Our daughter didn’t notice the diagnosis or the tears. She carried on lining up her toys, her little toys in the small bag she carried everywhere for security. Under her arm was her bunny, who went everywhere with us—a comforter.

We knew that we’d be receiving a diagnosis at the meeting, but hearing the word “autism” spoken still cut into our hearts. The feeling that her life would now be defined by a “label”; one that was necessary to enable support to be granted at school.

Telling family members provoked different reactions. One didn’t mention autism by name, but sent us a note referring to our daughter’s “problems.” Another said, “Well, there’s never been anything like that on our side of the family.” I did wonder if they felt that sense of grieving for the child we wouldn’t have, coupled with an immense sense of fear for our daughter’s future.

In the weeks that followed, I found it hard to talk about it without crying.  I guess the masses of emotions rushing around in my head had to find a way out and they did, through tears. I found myself imagining the events we probably wouldn’t see for D, like a wedding, children, a life partner. It was quite ridiculous, really, as it only served to upset me more.

I was a child-minder at the time and couldn’t help but compare the children happily playing in the garden to our daughter, who would put toys and/or books into a pile in the centre of the room and walk around them with a totally blank expression. She didn’t respond to prompts or offers of a cuddle. She was totally in her own zone.

I don’t know exactly when my mindset changed to a “can do” approach. I think it was around the time that D very hesitantly traced the letters of her name on a piece of paper sent home from school. That produced happy, proud tears on my part. Way behind the other children in her class, D could count to 50 by age 3 but had very stilted speech. Reading phonetically wasn’t happening and the (mainstream) teachers just seemed exasperated by her meltdowns, her unwillingness to enter a noisy/busy classroom, and her reluctance to join in. They described D as “flighty,” which hurt. D’s TA was fantastic though, understanding that D needed a “softly, softly, get down to her level” approach.

It took a while to get a Statement of Special Educational Needs for D. The first one was rejected and the second granted—it took about a year in total. It added so much stress to our lives, wondering why the “powers that be” were treating our child solely as a budget figure and not the individual that she was (and still is). We realised by then that mainstream education didn’t suit D and there wasn’t a chance of a SN school without a statement. The pressure felt immense and, all the while, we could see just how much D was struggling in the mainstream environment. It wasn’t for her.

It was a difficult decision to make for our then five-year-old daughter: Do we stick with mainstream education with exams at the end of her schooling? Or opt for the SN school, which didn’t offer exams but instead focussed on life skills and social skills and offered a smaller class size and higher staff ratio?

There was no contest really, we chose the environment we felt would make D happy and where she could fulfill her potential—the SN environment. From that very first afternoon and D’s smile as she rushed towards me, we knew we’d made the right choice.

Eight years on, we know we made the right decision. Our daughter is now a teenager and we know she wouldn’t have fit into the secondary school environment. She’s never going to be an academic, preferring crafts, music and low-contact sports. She’s happy, and we’re happy. And that’s everything.

Anonymous

When Living With Your Autistic Child Becomes ‘Unsustainable’

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I went with my daughter to see a mental health advisor. Her anxiety is out of control, her sleeping is poor and her eating almost non-existent. It is obvious my daughter is struggling and is on the cusp of being diagnosed with a mental health condition. The more my daughter talks and the more the advisor hears about home life, the more she shakes her head.

“This cannot continue,” she says with a sigh. “This level of anxiety is unsustainable.”

“Until the root cause of the difficulties is addressed,” she says looking right at me, “your daughter is never going to get well.”

“You already seem to know this. Will you help your daughter?”

She is asking me to put one child above another.

My son with severe autism is destroying his sister mentally and keeping them together is now “unsustainable.”

I had a long chat with the social worker. The hours of screaming, the self harming, the level of control that rules the entire house: it is killing my family. The smearing, the lack of sleep, the isolation: it is destroying my marriage. The violence and anger is damaging both physically and mentally to us all.

She gives me a stark choice: either one child will end up in a mental hospital or the other will need residential care.

Continuing as we are is not an option.

Then there are the parents. Both already on antidepressants, both exhausted and drained and barely functioning.

Love is not the question here: living is.

What do you do when caring for your autistic child becomes “unsustainable” for the rest of the family?

What if his unrelenting need for sameness means others are denied change too? What if his lack of sleep is physically exhausting everybody else? What if his meltdowns are so severe they are putting others at risk? What if his care needs mean siblings are denied having friends over and can never be part of the community they live in? What if his rigidity is so severe that nobody can have a haircut or even a new pair of glasses? What sort of effect does that have on a family?

Is love enough when damage is being done daily to everyone, both mentally and physically, by keeping the child with autism at home with his family?

He is my child, my heartbeat, my every breath, my all.

I can’t let go of him, but I am not sure I should keep him either.

This is not bad parenting; this is life with severe autism. 

I am doing my best with insufficient support. So many families are in the same place.

Love is not the question, living is.

Can I actually admit to myself that living with my own autistic son is “unsustainable”?

Angela Conrad

Piece by Piece

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Piece by piece, I felt my aching heart shatter into a million pieces. Each piece slowly tore away until my heart, which was once whole and perfect, crumbled into a million pieces. Little did I know that it would be slowly put back together, but in a much different way than before.

“Your child has autism.” It rolled off the doctor’s tongue as if it was nothing. It came out of her mouth so effortlessly and without any compassion. I sat there, feeling my heart start to break, piece by piece. Little did I know then that it was just the beginning of my broken heart.

As time went on, each piece disentangled more and more. The therapy schedule filled up and the life I knew before was no more.

My phone calls for catching up with friends turned into phone calls to fight insurance companies. My relationships with friends and family changed. I no longer could be the friend I wanted to be. I couldn’t do shopping trips away from my child. I couldn’t have a girl’s night out. It simply couldn’t happen. I had a child who needed me 24/7 and no one was pounding on my door, begging to babysit.

The anticipation as a first-time mother to hear my firstborn say, “Mommy, I love you” never came.

Trips to the store with my child simply couldn’t happen.

Normal, day-to-day living was hard work and exhausting. Nothing was easy. Brushing teeth, putting on clothes, and potty training were a far cry from what typical families experience.

Shopping for age-appropriate toys doesn’t happen. A simple look in the eye from my son may happen once a month, if I am lucky.

A full night’s rest was no more. We don’t know if and when we will sleep. Slowly, as life changed to adapt to our new life with autism, my heart just kept breaking, piece by piece.

The stages of grief came and they still happen daily. The rollercoaster life of autism was our new normal and it was the hardest thing that I have ever done in my life.

I soon found myself wondering the dreaded question: “What will happen to my child when I am gone?” I worry and ask myself this every single day.

Again, each day the pieces fell from my heart. It’s a hard life, but even though my heart broke piece by piece, I finally found the way to put it back together.

Slowly, over time, acceptance entered my life and I started to put the pieces back together.

As hard as it is some days, I started focusing on the positives. I started to see the joy in the unexpected. I soon saw the beauty. On some days, it is hard to find the beauty in severe autism, but there is always something even if it is a small thing. I long for the life I had before every day–that never goes away. However, I do enjoy the beauty of my new life.

Even though I have worked through and put the pieces of my heart back together, it will never be like it was before. I smile and laugh behind the scars that my heart has. The scars hurt and they are wounds from the life I envisioned for my child; a life without any trials. However, piece by piece, I put my heart back together and learned how to work though the scars. That is simply what we have to do.

Autism parents don’t have a choice. Our hearts breaks into a million pieces when our child is diagnosed and slowly, over time, the pieces are put back together, but in a different way than before. None of our closest family and friends could ever begin to fathom what we went through with each piece that was torn off. The only ones that know that feeling are other autism parents.

As time goes on, I hope you can enjoy how your new heart is put together, piece by piece.

K.M. Hodge

My Great Autism Parent Expectations

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

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

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

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

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

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

Helen Needham

Overcoming My Moments of Jealousy

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There are fleeting moments when I get jealous. When a post pops into my Facebook feed or someone tells me of a great thing they’ve done as a family. In these moments, I feel like we are missing out as a result of my son’s autism, and I struggle with the loss of things that we can’t do/struggle with/have never done.

It is not something that I am proud of, as we are happy as a family and have so much to be thankful for. It is just that when I am reminded of some of the struggles that we face, I need a little time to reset myself. Time to get past the thoughts of what we are missing out on, and time to remember the moments we do have and the achievements we have made.

Parties, Friends and Playdates

When I see children with friends or pictures of birthday parties or hear of their playdates, I am reminded of the things my son doesn’t get to experience. I feel the loneliness, but he does not. He struggles with social interaction and his need to control the world prevents him from making friends. He misses the friends he had when he was younger, but in a crowd of people it is his Dad that he turns to for company.

When I feel the loss of friendship, I remember his amazing bond with his Dad and realise that he has a great friend already.

Academic Progress

When I see children getting awards, I am reminded of the fact that he has never received an award or even been designated pupil of the week. I feel his lack of progress compared to his peers but he does not. He struggles in the classroom, requires a lot of support to get through the day and took years just overcome his resistance to writing. He is progressing slower than his peers and is not fulfilling his academic potential, but he loves searching for answers to questions that most children don’t even think about.

When I feel his slow academic progress, I remember his inquisitive mind and realise that he doesn’t need awards or validation from others to make him feel successful.

Participation in Sports and Activities

When I see children’s sporting achievements or photos of the activities that they have taken part in, I am reminded of the sports lessons that did not work out and the things we can’t do. I feel him missing out but he does not. He struggles with team sports and any regular lessons, so our weekends are typically spent at home. Given the choice he would rather run around pretending to be a superhero or playing with his Lego.

When I feel his missing out on sports and other activities, I remember the skills he has mastered to create some amazing Lego creations and his training plan to become a ninja. I realise that he doesn’t need to play a sport or learn a new skill to feel accomplished.

Days Out, Holidays and Special Occasions

When I see families enjoying fun times together, I am reminded of the days spent on edge as I work at 200% to help my son get through the day and avoid a meltdown. I feel the struggles that we go through but he does not. We need to plan our trips carefully and special occasions are often tough, but as a family we are learning what suits us best. We have had unexpected moments when our son has gone out of his way to make us laugh or do something caring for one of us.

When I feel our challenges with family events, I remember our Saturday night dance-a-thons and the summer weekends in our garden. I realise that we don’t need to go away or wait for special occasions to have special moments as a family.

Overcoming My Moments

When I have my moments, I remind myself that other peoples’ lives are not just made of Facebook moments and happy stories, and that each family has their challenges that I don’t always see. I remind myself that everyone has their moments when they deal with their own struggles, and they also likely have fleeting moments of jealousy.

I remind myself that it’s OK to feel sad sometimes and that our family is defined by what we make of the moments that we have together, not by what we can’t do.  I remind myself of how far we have come, and that we are making progress every day. Who knows where we will be tomorrow.

Angela Conrad

I Am Tired

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I’m a special needs mom and I am tired.

It’s the kind of tired that affects a person both mentally and physically. The type of tired that I feel can’t be explained. You have to endure the day-to-day challenges of autism to know what I am talking about.

I’m tired from the lack of sleep because autism doesn’t know how to sleep. Most mornings my oldest is awake by 4 a.m., bouncing off the walls — literally! For years he didn’t sleep. We survived on about two hours of sleep in a 24-hour period for several years. Needless to say, I lived off of coffee. During this time in my life, I suffered the kind of tired that I wouldn’t wish on my worst enemy: Sleep deprivation.

I’m tired from the day-to-day challenges. I am worn out from trying to figure out what Trenton wants because he can’t communicate. I’m exhausted from making sure I do everything just right in order to prevent an OCD meltdown from Andrew. I’m enervated from all the anxiety Andrew suffers from daily.  I’m ready to drop at the end of the day from preventing sensory overloads and following schedules so we don’t have meltdowns. The list goes on and on. Each day is full of challenges. Each day is mentally and physically exhausting.

I’m tired from all the paperwork. I’m sick of talking with insurance companies. My son needs an AAC device and all the paperwork and signatures to prove that he can’t communicate is out of this world! I’m drained reading the words from therapist and teachers. I know it’s the truth, but it hurts so badly reading about what my child can and can’t do. I am so mentally tired from it. Oh, how I wish I could make it all better for him, now!

I’m tired of the loneliness and isolation I feel. I’m sure being a single mom doesn’t help the loneliness factor, but it’s there and I wish it would go away. It wears me out wishing and hoping for the best daily.

I’m tapped out from having my guard up non-stop. I just want to let it down sometimes, but I can’t with two boys with autism. I just want to be in public and not feel like I have to explain why my son is doing what he is doing to the people who gawk and stare. Oh, the looks and stares get so tiring.

I’m drained from educating others on autism. I am sorry that your sister’s husband’s friend’s cousin has a child with autism and he’s different than my child, but yes, my son still has autism. Yes, actually — both my boys have autism. And yes, they are totally different. It’s all autism; not one person is the same, but it’s still autism! I’m so mentally exhausted by that fight!

I’m exhausted from all the doctor and dental appointments. They are not pleasurable visits for any kids, let alone those on the spectrum. I have one child who needs a group of people to hold down to get any kind of exam done. Then I have my other child who will do the exam, but yells and tells everyone exactly what he thinks of them because he thinks everyone just did “bad” things to him.

To be honest, I’m tired of the challenges that autism brings to my children and our lives daily. However, the challenges are always going to be here. If I am this drained from the challenges, then I know my boys are, too. Therefore, we just take very short naps daily and wake up facing our journey with autism together. We are tired but we refuse to give up and walk away. Instead, we continue daily — we just do it a little tired.

Kate Swenson

Confessions of a Special Needs Parent

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Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and loving.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary, right?

You aren’t a doctor. Or a therapist. Or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids, you have no idea what you are doing. But yet, you are entrusted to raise this tiny VULNERABLE human.

At first, you don’t want to acknowledge it. Then, you don’t want to believe it. But once you get over that hurdle, you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whoever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgment. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during Happy Hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking. You silence yourself. You start to wonder if you are just complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward, you struggle silently. You keep your mouth shut.

When you do mention any of your struggles, you feel the need to put “but I love my child” in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in response, I asked special needs parents to confide in me. I asked for their secret confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. We are human.

Humans who live in a secret world.

My Advice to You, Dear Friend

On your darkest days, I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

There were 225 of you who sent me confessions. These are my favorites.

“I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live every day isn’t always beautiful.”

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over-the-counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

“I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

“It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said ‘but that’s just hard on you because you have to do a lot for him…would you change anything about him?’And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!”

“Some of the sounds my son makes actually haunt me. I have to wear headphones at times.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I have a ‘sad’ moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

“I see no future for my child and it breaks my heart daily.”

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

“I know my marriage will not survive this.”

“I give up almost every day. Actually that’s a lie I give up every day! Sometimes as soon as I wake up.”

“I secretly cry every day. My husband has no idea. He thinks I’m taking a bath or doing laundry.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

“I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids.”

“I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a ‘normal’ kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.”

This is a glimpse into the private world of special needs parenting.

We aren’t all that different from parents of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. It can often be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

“How do we advocate for something we hate so much? I hate my son’s disability, but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.”

The full, original version of this post can be found here.

Jodie Eaton

The Many Things I Love About My Child

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jodie-love1

There are so many things I love about my daughter; her autism doesn’t even come close to defining her:

I love the way she smiles. When she smiles, it’s like the sun shining so bright.

I love the way she concentrates when she’s lining up cards all over my floor. They follow no line, but to her, they’re perfectly straight.

I love the way she gets excited about shaving foam in the bath; the anticipation on her face when I squirt that tin into her little pudgy hand.

I love it when peek-a-boo causes her so much excitement that she squeals with delight.

I love it when my four year-old can make her laugh so hard that her whole body seems relaxed, caught up in that moment of abandonment.

I love it when she just wakes up in the morning and lies there, so still and so silent, wondering what the world will bring for her that day.

I love it when she tells me about the wonderful things she does at school; snippets of information that I have to interpret because she can’t, but just enough information to satisfy me for a week.

I love it when she asks me a question, knowing the answer but asking it anyway just to hear mine, as if to assure herself she’s correct.

I love the way she runs home from the bus, desperate to see her brother and sister.

I love it when she notices something that is so small to any of us, yet completely stands out to her.

I love seeing her engage with people she wouldn’t normally, initiating conversations that I never thought I’d hear.

I love it when she mixes her words and laughs at herself, then repeating the words all jumbled up again and again, laughing each time.

I love it when she enjoys her favorite songs, dancing along with no care in the world, no rhythm just movements, out of tune and no right lyrics, but completely immersed in the sound.

I love it when she shows me something that she’s just achieved, so completely proud of herself.

I love her commitment to life, to succeed; her determination to stay strong.

I love her innocence, the way she makes me promise to leave Santa a note, to explain she wants her stocking left downstairs and not in her room. When she puts her tooth under my pillow instead of hers, as she doesn’t want to be disturbed by the tooth fairy.

I love it when she’s anxiety-free, her mind allowing her that tiny bit of escape to wander free.

I love her hope, and her ability to never give up, her endless tries and her devotion to achieve things she wants to achieve.

I love the way she tried for months to click her fingers, and whistle, and the joy she shared when she achieved both things.

I love my child with Autism.

I love my child.

 

Melissa Cote

The Day I Understood My Daughter’s Stim

/by

Melissa Stim2

My daughter Zoey is 4 years old, and is considered non-verbal autistic.

She can’t tell me her wants or needs or if she’s hurt or sick and, as her mom, I want and need to know these things. Through intense early intervention therapies, Zoey has come such a long way and it has been one hell of a ride.

My non-verbal daughter sings—she doesn’t talk—and I found that I could communicate with her through music. There is a song for just about every scenario in our house. If she says “No,” then you will hear her sing, “No more monkeys jumping on the bed.” Yup—that is her rendition of the word No.

Twinkle, Twinkle, Little Star was her first song and it is her go-to song if she’s angry or needs to escape from the overstimulation of a situation or even the world. I watch this gorgeous child as she stands, puts her hand up in the air, and stares into her palm. It’s like she’s seeing magic in her hands that NO ONE else can see. And yeah, I wish I could see it!

I watch her when this happens and I’m jealous—like, really jealous. This one particular stim is amazing.

She has many stims, like rocking and banging her head when she’s trying to soothe herself, and loves to line things up all around the house. She’s a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim, it’s beautiful. When she does it, I know she can’t answer me, but I can’t help asking her every single time: “Zoey, what do you see my love? Is it beautiful? You make it seem so amazingly beautiful.”

Oh, how I wish I could see what she sees.

I’m jealous.

She does this stim throughout her day with a huge smile on her face, so I know that whatever she sees is angelic; it’s heavenly to her. Seriously, who wouldn’t want to see that? I’ve tried figuring it out for two years now and I never could. That is, until just recently, with the help of her new favorite song.

Zoey and I jam out to music all day and night. Zoey is fast paced and she’s not the kind of kid to sit in front of the TV. In fact, when it’s on, she actually shuts it off herself. I love all kinds of music and so does Zoey.

Music by Carrie Underwood (See You Again), Rascal Flatts, (My Wish) Beethoven’s Moonlight Sonata, and Michael Buble’s Lost… She loves Imagine Dragons, and she digs Elvis too. I am never surprised when a particular song reaches her. She’s had so many different types of therapy, but NOTHING has done for her what music has done for her.

Zoey communicates through music and it’s awesome. I love it because I love music too, it’s our connection.

Recently, I’ve been listening to a new band and she digs them a lot. She comes running from her room if I start playing the song Ride by The 21 Pilots. Not a little jog either—I mean full-on marathon speed, because she doesn’t want to miss the song.

That’s how the Beastie Boys were for me at her age, so I know how much she likes this band.

I had their video on our TV via YouTube, and she sat and watched it. Seriously, this kid doesn’t do TV, so I was shocked that she didn’t try or even move to shut it off. She heard her song and she was watching them sing it on our TV. It was a very cool moment.

I had never seen this video so I was into it too. Then I saw her stim…

The video was dark and then went to a bright light: darkness to light.

Zoey stood up and put her hand up in the air. She smiled a huge smile as she gazed at her palm. and then she closed her eyes. Still smiling, she began to twirl and spin right where she stood… She was dancing, in her own way, to her own beat, as the music played.

I finally understood.

I’d been thinking too much about it. It’s really just as simple as this: It’s her pure joy and love for something. Whenever things seem to go dark, she can find a way to see through to the light.

——-

A version of this piece first appeared here.