Autism gets a bad rap with families and marriages. I’m sure you hear it all the time. The pulling apart. The stress, the constant worrying, the lack of time with your spouse and other children. The focus becomes your affected child, and there’s no time for you or your partner.
I thought my marriage was strong. It wasn’t strong enough. My spouse and I did what many parents do: gave everything we had. Every spare waking moment was directed at the children. We were tired. Timothy, my child with autism, had a long and aggressive period we couldn’t seem to come back from.
I cried — and often. Timothy focused a lot of his aggression on me for some reason, and it beat me down — far down into a deep pit of despair. I couldn’t take him anywhere without a second adult. He destroyed our home, his anger apparent on our living room walls. My partner couldn’t understand why I cried. It hurt. I didn’t feel supported — although looking back, maybe he was supporting me in his own way.
We drifted apart slowly, not even noticing at first. As usual, the children were priority. But this is what you should learn from me:
Who was there before your children? Your partner.
Who is your backbone? Your partner.
Who will be there when your children grow up and leave the nest? Your partner.
There’s no handbook on parenting or managing a marriage and special needs. You sort of have to fumble through it, messy as it can be, and figure it out on your own.
If I can give you anything from this to take away, I want to encourage anyone reading to make time for your partner. You — moms and dads of children with special needs — are as important as your kid. I’m serious. Make time for each other. Love each other. Often. Even if it’s only a few minutes a day or a monthly date night. Learn from my mistakes.
As for me, I’ve learned so much these past few months on this roller coaster called love and marriage and special needs. I call this coaster, “One day at a time.”
I had a blog draft started called, “Why I Cringe at the Word ‘Autistic.’” I asked my family to stop saying it by politely and lovingly telling them it was putting a label on my son. It was defining him, and he’s so much more than just an autistic kid.
My feelings on the word “autistic” are hard to articulate. The word sounds so severe to me. It boiled down to this, though: Autism is not something my son is. Autism something my son has.
Of course, it’s just one little word and it’s not meant in a negative way. But when something is so close to you, such a big part of your life, impacts your child — the child who you’re incredibly protective of — a simple word can stir up emotions.
Here’s where this changed for me.
I was reading a blog post about using word “retarded” to refer to a mistake or something you don’t like. The comments below the post steered in different directions. “Is autistic” vs. “has autism“ popped up. Someone who actually has autism offered her opinion, which completely peaked my interest. Who better to listen to about autism awareness than someone who actually has autism. Here’s what she said:
“I am autistic though. Not a person ‘with’ autism. Autism is not a personality quirk that I carry around with me, it’s a part of who I am.”
Now, imagine if someone without autism said this:
“People are autistic though. They’re not people ‘with’ autism. Autism is not a personality quirk that they carry around with them, it’s a part of who they are.”
These statements make different impacts. Hearing someone who actually has autism say it made all the difference for me. I have my own struggles, but the bigger picture is about my son. One day, when he’s able to put his thoughts into words, I’ve got to ensure that I truly listen to what he has to say and not get caught up in my own emotions and ideas about what he wants. After reading her comment and reflecting on it, I’ve come to the seemingly obviously realization that I will forever ask for my child’s opinion.
I’ve said before that I can’t imagine my son without autism, yet I was so hung up on the word “autistic.” That’s not what I’m truly hung up on though. I’m scared. I’m afraid Brandon’s peers won’t understand him. I’m afraid when his teachers talk about him they’ll say, “You know, Brandon… the autistic one.” The thing that keeps me up at night is that Brandon’s feelings will be hurt because some adult lacks compassion and understanding or an innocent child just doesn’t understand.
When the time came for me to have children, there were a lot of options and situations that I knew I needed to be prepared for. I have to admit — a majority of my thoughts were about choosing nursery bedding and baby names. Would I use cloth diapers or regular ones? What stroller should I get? It had never occurred to me that I needed to prepare myself to raise a real-life superhero.
When I see my son, I don’t just see a child with autism who needs help to be part of the world. I see a superhero who can teach me and others far more about the world than I could ever teach him. I see the most amazing, dedicated, triumphant child who has a unique skill set unlike any other. I see a boy with the truest, honest, kindest heart that I’ve ever seen. I see a boy with great passion for life. He’s a person with a special connection to extraordinary individuals and a trusting heart that doesn’t judge. I see so many magnificent qualities in him.
But the reality is, it’s not all cake and rainbows.
The hardest part about raising a superhero is watching the battles they encounter daily. There’s no way to truly document how that feels, as a mother, because it’s indescribable. However, watching your child discover the world in a way that most people could never imagine is the indescribable counterbalance to it all.
Everyone has their own philosophy on how to raise a child on the spectrum, and I respect that. For me, the question often isn’t about how to raise a child with autism. It’s how can I help foster his inner superhero?How can I help him build upon the wonderful foundation he already has, and how can I help further develop the person that he is? It’s hard as an autism parent mostly because there’s a fine line between trying to help faciliate the kind of growth that will better prepare him for this world and how and when to let him soar and just be him. I think many parents of children on the spectrum struggle trying to find exactly where that line is in a life full of therapists and interventions.
You spend every day trying to live in what feels like the same world as your child. You spend countless hours lovingly trying to bring him/her into your world and stay there. A world that brings your child extreme discomfort and pain. To even make my first real connection with my son, I had to enter his world, and I think that should really count for something. I may be uncomfortable with his world because — just like my world is to him — it brings me extreme discomfort. But he loves his world, and I feel that has to count for a lot when deciding where that fine line is. To be honest, I don’t think we really live in different worlds; we just see and feel things differently.
As a parent of a child with autism you need to go outside your comfort zone and think more about when to help foster the inner superhero inside of them. You see, according to the dictionary, a superhero is a fictional hero, but I don’t agree. When I see my son, what he can do and how he perceives and combats the world on a daily basis, it’s clear to me that superheroes are indeed real. There’s nothing fictitious about them, and I couldn’t be prouder to be raising one.
This blog is dedicated to all the real-life superheroes and extraordinary children out there. May we all feel the blessings of your presence and the amazing qualities that you possess and bring to our world. Thank you for all that you do.
If I had a dollar for every time I heard this, I could pay off my house, your house and probably have enough left for a nice new car. Honey, it’s time we had some real talk.
I keep hearing this. Hell, I’ve even said it myself. But, this isn’t about you. It never was. It hasn’t been about you since the moment the doctor said, “It’s a boy! Or girl!” Sorry, sunshine, I’m all for a pity party for one from time to time. But this resisting a label thing? That’s not helping your kid at all.
I’m not going to beat around the bush with this. Your kid (and mine) already has a label. The weird one. The troublemaker. The quirky one. The “What’s with that kid?” one. Why not get them the correct one? More important, get them the correct supports in place for success.
I believe the label is a necessary evil. I know being practical is about as much fun as watching paint dry, but it is what it is. Think you’ll get an insurance company to pay up for some sort of nondescript help? I can’t even get them to pay past 30 sessions of speech therapy, and my kid has an autism label. Plus, I get the added bonus of having my yearly conversation: “Why yes, I will still be taking him to speech therapy and paying out of pocket. He’s still very much autistic. He didn’t magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!”
And school? You’re definitely going to need a label there. No one is handing out IEP’s all willy nilly for kicks. You want that free and appropriate education the law entitles your child, you have to get the label. You just do. You want to get the best possible tailor-made education for your kid, you best accept that label that so terrifies you.
I get it. I really do. I was in denial for years. I didn’t want to see what was right in front of my face. Once I started accepting it, well, I got used to it. It’s not a case of getting better. You just start finding your kid’s own groove. I started following the tour guide that autism sent to me. Yes, there are frequent stops for french fries and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.
In other words, I got the eff over myself. Everyone just wants what’s best for their kid.
Last year I met a young woman through Facebook named Sophie Webster. She lives in the U.K. and we live in the U.S. Although we’re thousands of miles apart, Sophie has taught me far more than any therapist ever has about my son, Kreed. Sophie uses a communication device as well and can type out her thoughts. She’s given me insights into Kreed that’s allowed me to better teach and understand him.
I believe Sophie’s words can change the minds of anyone who thinks those who don’t use their natural voice have nothing to say. She spent years unable to speak or be heard, and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. I asked Sophie if she would write a bit about her experiences. So, without further adieu, here are a few snapshots into Sophie’s world.
Sensory overload is the worst feeling in the world! I get it when I see too many people walking past me or if I hear too many noises at one time. For example, in a room of people talking, my brain tunes into everyone else’s conversation, and I struggle to filter the voices out and listen to the carer I’m with. It’s so frustrating and I have to be redirected to listening to my carer. When I get sensory overload it’s like I have 100 buzzing bees in my head, and my head hurts a lot and feels like it will go bang! like a balloon. It’s the most uncomfortable thing ever. I bang my head on things to try and relieve the pressure in my head, to try and stop the feeling. While I’m experiencing sensory overload, I find it hard to talk or make any sentences. My speech just won’t come out as I want it to, and I can’t make the words make sense. I get cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it, but if you imagine having 50 people trying to talk to you at one time and needing to answer every single one of them, then maybe — just maybe — that’s a little insight into what it feels like.
I have a lot of obsessions like time and numbers. I like the numbers 0, 5 and 8, so when I used to wear a digital watch, I wouldn’t do anything unless it was on one of those numbers, which, as you can imagine, caused many problems. There are many ongoing battles of obsessions which come into my life daily, such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes, standing in the same place at the gym — the list is endless. But my carer is great at working with me and we’re overcoming a lot of hurdles my life easier. Sometimes cracking a new obsession is hard; it makes me so twisted and frustrated inside, and I throw my head back and close my eyes. I can imagine it’s frustrating for my carers and people to witness, but it’s just the way I work the frustration out of my body. Then I try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated, I bet, but believe me, overall it’s so much easier than just giving into all my obsessions.
I first got a communication app in 2011 for my 21st birthday (Best present ever!). I was having daily meltdowns because I couldn’t verbally tell my carers what was wrong or even say hello to my friends at my day service. I could sign, but not everyone understands that language, so my list of who I could talk to was limited. I decided to throw myself into using my app because I wanted to be heard and it felt good to have a voice (I had waited long enough!). Since then, I’ve never looked back.
I hope you’ve enjoyed hearing Sophie’s thoughts and will think about what it’s like for your kiddos and what we can do to better support them. It’s voices like Sophie’s that will ultimately raise awareness and give others understanding.
My son, Mareto, came home from Ethiopia as a sweet, wide-eyed and peaceful baby boy. Having a child was a dream come true for me, and I cherished every moment — even the nighttime feedings.
There were several moms at our church who were pregnant with babies due right around the time Mareto came home. While they talked about their kids’ growing bellies, I sat on the sidelines and thought about the paperwork I was laboring through. While they shared delivery stories, I sat quietly and thought about the trips I took around the world while I held my sweet son. At times I wished I could relate to their stories, but I didn’t mind too much because I figured after a little time passed, I’d be just another mom among all the other moms as we raised our kids.
So it came as a sad surprise to me when months passed and I still felt so alone and different in parenting. Why couldn’t my boy sit through church with me like all the other babies? Why did my son fall apart when we tried to take him into the nursery? When the congregation sang or applauded, why did my baby begin crying hysterically? All the other kids started eating solids and saying words. Why didn’t my boy call me “Mama” and start talking too? Was I a horrible mommy? Why wasn’t my son developing like all the other kids? Mothers shared milestones on Facebook, and I cried behind my computer screen.
Soon it became evident that something was different about my precious boy. I knew he wasn’t like the other kids, but I didn’t know why. On September 5, 2012, we learned the reason behind all of it. Autism. One word and I felt more alone than ever before. I didn’t know anyone with a child with autism, but I knew our world would never be the same.
While other mommies took their kids for mid-morning playdates, we drove to therapy. When other children enjoyed birthday parties and gatherings, my son melted down – overwhelmed by all the people and sounds. The other kids his age were beginning to speak in full sentences and ate sandwiches; Mareto communicated mostly by gesture, and we were happy if he ate a bowl of oatmeal once a day. Other moms brag about their child who just went in the potty, and I wonder if I’ll be changing his diapers when he’s 5. If I let it, having a child with autism can be a lonely place.
A special friend sent me an email with a portion of her daily devotional. I read the words, written by Beth Moore, with tears in my eyes.
Blessed are you when what takes the natural course with someone else means that a miracle has to happen for you.
I’ve got a friend that I admire so much, a young woman in the Houston area who has a son with autism. He, like many children with autism, did not speak for many years.
When he was about 4 and a half, I got a text from his mom saying, “He said ‘Daddy’ today!” Nobody on the planet has ever had that much celebration over saying the word “daddy.” Nobody! You can’t imagine how all of her friends just shouted praise to God.
Other kids have been saying it all day long and no one noticed, but we noticed when this one did! What had been a natural course for someone else had taken the supernatural power of God for this little boy.
What seems effortless to some may take miracles for others. But I’ve never met anyone who afterwards would have traded the miracle! I know it’s hard to imagine that when you are in the midst of it, but trust me you’d rather have the miracle.
Through the miracle of my son I can see that I’m never really alone. I believe God sees every struggle, every tear and every lonely moment. He holds my hand through it all even when I can’t feel his presence. Mareto has opened my eyes to see the miracles in our everyday lives. I’ve been blessed to find friends who have risen from the crowds, wrapped their arms and prayers around us and decide to take the steps to go on this journey with us.
Mareto has given me more joy than I ever could have imagined. We work so hard and we delight in each triumph. There are many joys to be found in the little things and that’s where I choose to spend my days — finding joy in what might seem like ordinary moments for others… but are truly extraordinary moments for us.
And because we’ve been given the gift of Mareto (and his little sister, Arsema) I’m never alone. I have more love, more affection, more snuggles and more hope than ever before… all wrapped up in a very special boy.