I Love Someone with Autism

So often we avoid talking about the tough stuff. When someone is going through a difficult or emotional time, many people respond by backing away. They fear offending the person or getting it wrong or not having all the best advice or ability to “fix” the situation. I am guilty of this, even with my closest friends and family.

When it comes to autism, I want to talk about it.

The Centers for Disease Control and Prevention (CDC) says that autism now affects 1 in 59 children in the US. Including this handsome little man right here.

This number used to be 1 in a 1,000.

What does this mean? I am not here to start a debate about vaccinations, or epidemics or finding cures.

What this means is that you are VERY likely to cross paths with someone on the spectrum. This person might be in your very own family or circle of friends, at your children’s school, the neighborhood playground, or the grocery store.

Autism will touch your life.

I want to talk about some ways to support kids with autism and their families.

  • Lead by example. Your children see the way you are around people who are different.
  • Talk with your kids about autism. When they see a child behaving in a unique manner, draw on the similarities they share with your child. “Look, that boy loves the swings, too!” Your child will find their new buddy to be no less happy, fun, loving, adventurous and interesting as their other friends.
  • If a child tries to interact with my boy, he may not respond. He likely didn’t understand the question, or doesn’t realize someone is talking to him. He isn’t intentionally ignoring, and would never want to hurt anyone or make them sad.
  • This kind of social interaction is INVALUABLE for him to practice. Children should be encouraged to ask again, try again later, or “give” him the words to say. “Come get me!” “Let’s go!”
  • If a child is upset, give them some space. They are likely overwhelmed and/or sensory overloaded so too many words can heighten the situation. Offer a hug, or try counting down on your fingers.
  • Some kids on spectrum will repeat themselves over and over again. Children can respond gently with “I need a break” or “not right now”.
  • Remember that these kids can hear, feel and understand so much, even if they don’t say as much.
  • Don’t be afraid to ask questions (both parents and kids!) except “is your child high-functioning?” Who wants to go around with a low-functioning label? And don’t be afraid if your child asks forward and bold questions! Even if it creates an awkward moment, it’s the perfect moment to spread awareness and I love it.

And to support the autism moms and dads out there, especially ones with newly diagnosed kids, remember that you don’t have to fix anything. Just listen.

Autism mom and writer, Diane Dokko Kim, said it so well: “We will do the talking. There is so much in our heart that’s conflicted. We need a safe place to unpack it. You know what I really need from my friends? Just come and bring the emotional barf bag, I will fill it.”

When we sit in pain or struggle to unpack emotions, sometimes we just need a friend to sit with us.

Thank you for continuing to learn about autism, now I want you to talk about it too! Start a conversation, with your kids, your friend, your neighbor, your bartender, etc.

You are helping us spread kindness, inclusion, connection, understanding, patience, and so much love.

 

Autism Is…

This is a small glimpse into our little boy’s life with autism.

When my son was diagnosed at 3 years old, I spent a lot of time trying to condense autism down to something tangible, to fit it into a nice pretty little box.

I was desperately trying to understand what my boy was going through, so I could help others do the same.

It didn’t take long to realize that autism has so many varying elements, contrasting characteristics, unpredictable and unique journeys.

Autism is so much more than most people realize.

We share our story to help spread autism awareness and with the hope that this knowledge leads to more patience, kindness, inclusion, advocacy, acceptance and love everywhere.

 

If you’d like to share our video, follow or copy the link below:

 https://www.youtube.com/watch?v=vuglqN6k1PI

 

Listen with your Heart

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Hearts have always been Wilson’s favorite shape.

Because of his autism and limited verbal skills, in all of his five years on this earth he hasn’t told me this, I just know.

He is drawn to them. He likes to build them by putting other shapes together and points them out whenever he comes across one.

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This makes perfect sense, with him being the sweetest little guy I know.

Sweet, and a little spicy, too. He is often in his own world, one that we are constantly working to understand, and I know he is working so hard to do the same.

The daily frustration he feels from not always knowing how to clearly get his wants and needs across just hurts my heart to think about.

Our constant prompts and reminders to “use your words” or “try again” are likely just as maddening for him as the desire to hear his sweet voice is for us.

We often forget that words aren’t what is needed, not what is missing.

For someone with limited eye contact (or, as the reports say, “poor” or “lack of”) he catches me by surprise when he sits and stares into my eyes with such a prolonged gaze. It’s like he is studying every single molecule in my eyes, lashes, and skin.

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He touches, smells, takes it all in.

I always wonder what he sees when he surveys me so intensely. He is probably just admiring his own tiny reflection mirrored back at him from my eyes. His reflection has always fascinated him.

Sometimes it feels like he is peering right into my soul. He is so full of wonder and curiosity. I know he can’t read my mind, though. He doesn’t seem to feel my fear and worry nor is he weighed down with concerns about safety, inclusion or health.

He is pure happiness, and I am so thankful for that.

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Simple things make him so happy.

He recently discovered our old DVD collection and has been carrying several around with him, his new treasures.

The other night, he repeatedly played the same DVD over and over again, always stopping and restarting after the previews had finished.

During the preview for Dumbo, the sweetest song called “Baby Mine” played in the background as Dumbo’s mother caressed, comforted and protected her baby. Wilson came over and gently stroked my face during this scene every single time he replayed it.

If you haven’t heard “Baby Mine” (by songwriter Frank Churchill), grab a tissue, here is a little glimpse:

Baby mine, don’t you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one when you play
Don’t you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you

They’d end up loving you too
All those same people who scold you
What they’d give just for
The right to hold you
 

Cue the tears.

This sweet boy may not talk much, but he is learning how to communicate in so many different ways every single day. He pays attention and interprets even the tiniest of details.

In that tender moment, I went ahead and let myself feel what I thought I had been needing to hear from him.

I love you. I am happy. I’m going to be OK. Thank you.

Truthfully, I don’t know why I thought I needed to hear these things. Wilson has been showing me all along, I just wasn’t always listening.

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Living in the Present as an Autism Mom

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“Is he going to be like this forever?”

My seven-year-old niece was quiet and hesitant with her inquiry.

Her mom and dad have talked to her about my son’s autism and I was thrilled when they told me that she had some questions for me.

I love spreading autism awareness. I especially love talking about my sweet boy and all of the unique, wonderful and challenging pieces that come together to make him so very special.

I could barely contain my excitement that someone so young was taking an interest in learning more about autism. I said, “Ask me anything!”

“Is he going to be like this forever?”

I wasn’t expecting that. I was certain she was going to ask why he doesn’t talk much, or listen to her, or why he lines up his toys over and over again.

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I started rambling on and on about how he will always have challenges and possibly be delayed for his age, but he won’t stay like this. I’m quite sure I lost her.

I do know that I avoided saying, “Yes.”

I often write and talk about how important it is to stay in the present when raising a child with autism. I don’t allow myself to think too far ahead when envisioning my son’s future. There is so much fear and worry about the unknown, the stress over it can send me down a spiral to nowhere. I try really, really hard to avoid this. But once a week or so, I have a meeting or conversation that forces me to think of my boy’s future.

The other day we were in a session with our OT, who I adore, she has been such an integral part of my son’s progress, treatment plans and my overall understanding of autism and what he is experiencing. We were talking about cognitive testing and upcoming IEP meetings and preparing him for kindergarten.

Kindergarten. I seriously say that word like I am allergic to it. I have so much anxiety about him entering kindergarten but that is a whole different spiral that I will save for another day. She mentioned something along the lines of “if he graduates high school.”

IF.

I had absolutely never put it in my mind that there was a possibility he would not graduate. I mean, look, I can’t bring myself to think as far ahead as kindergarten next year!

That thought stayed with me the rest of the day. These are the kinds of conversations that trigger that pesky spiral to nowhere. I shouldn’t have to be thinking about IF my son will graduate from high school. He is five years old.

I should be dreaming about him graduating and going on to be an engineer, a firefighter, a professional climber, whatever he wants to be. He can be whatever he wants to be. God, help him be something. He’ll be something. Let’s see, his interests are keys, eggs, pirates, and trains… and music! He could be a musician. No, some sounds literally hurt him. That won’t work. How will he even get to work if he isn’t ever able to drive a car. I can drive him. He’ll probably be living with us anyway. Maybe he could take a bus? No. No bus. I just can’t get old, or unhealthy or busy so I can take care of him. No one else can take care of him like we can. God, please make sure I stay healthy for my boy. I need to be here.

I share these thoughts with hesitation. I know some people would call this a pity-party or complaining. Call it whatever you want. I still want you to know what it looks like, and how quickly it happens. I know some of you know what it feels like, too. The fear, worry and anxiety that some parents face. The push-pull of telling yourself it’s ok and it really not feeling ok.

I kept the excerpt short, because I will not allow myself to stay in that rabbit hole for long.

Negative thoughts are exhausting and they take their toll. That’s why it’s so important to stay right here, right now and continue to grow.

I know my boy is going to do amazing things. He already has.

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New Year, New {Autism} Mom

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I’ve never been that interested in New Year’s resolutions. But these days, as a mom to an adventurous five-year-old boy on the autism spectrum, I have found that goals are what give us direction, forward movement, and growth. They maintain our sanity and our hope. They are the light that remains through the daily storm of autism.

These are the top 10 goals I will accomplish this year. I’m not talking about aiming, striving or hoping. I WILL do these for myself, for my son and our family.

  1.  I will not fear the big stuff. The longstanding goals such as increased communication, temperament during haircutting, toileting and other self-care, broadening the diet and success and safety out in the community will all improve. While this “long-term” category can feel heavy and loom over us, we will not let these important pieces defeat us.

2.  Patience. Self-coping and calming techniques (for everyone in the family) have steadily made their way to the very top of our priority list. Some days, this is our only focus. For my son, every single other thing must come second as he cannot hear, speak and certainly cannot be reasoned with when he is overwhelmed or sensory-heightened.  Finding and remaining in this place of calm takes patience. So much patience. It’s funny, how many people comment on how patient I am. If only they knew the amount of time I spend searching and praying for more.

I will also be patient while my children stutter and search for their words or attempt to express their wants and needs. I will wait it out just a little longer when they struggle to put on their clothes or shoes, brush their hair and teeth, or attempt household chores. If I constantly jump in to assist, I’m robbing them of the opportunity to learn and gain confidence.

3. Join his world. So often, we are working on helping my son fit into our schedule or norms.

To join my boy’s world, to understand and connect, is such a struggle. We, as his parents, consciously work towards this every single day.

I will be his place of calm. Sometimes that means sitting on the kitchen floor and taking in his deep butterfly or bumble bee breaths with him. And some days this will happen on five different occasions before breakfast.

  1. Embrace the chaos. The couch jumping, dresser climbing, spinning, bouncing, running, loud scripting and high-pitched screaming. I will let him enjoy that energy for the freedom and happiness it brings him instead of constantly trying to corral it.

In those loud, chaotic times I will remember what it looks like when his anxiety and frustration have taken over. If I pause in that wild happiness with him, maybe some of that joy will spread. We just have to let go, even the tiniest bit.

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  1. Self-care. OK this is a tough one. I am going to put value on every single family member’s happiness, including my own. If you are like me, the recommendation of fitting more self-care into your already-hectic life is more irritating than hearing the Baby Shark song 50x a day. It is so important though. “You cannot pour from an empty cup.” I know, I’ve tried.

6.  When all else fails, find grace. I will be prepared for every IEP/ABA meeting, every doctor/naturopath/audiology/dentist/speech/OT/blood draw/psychologist/counseling appointment. I will bring social stories, snacks, incentives, and toys. And I will give myself grace when none of that stuff works like I had intended.

7.  Look back. I will continue to look back to where we have been so we can celebrate where we are now. Progress can feel slow and discouraging at times, but I will not get lost there and miss all the growth and amazing new things happening every day.

8.  Slow down. What’s the rush? I’ve been that irritated lady stuck in a slow checkout line. Or the one pulled over for speeding because I was running late. When I am pressed for time and irritable, it affects everyone.

9.  Be kind. One of the best things that has come from sharing my son’s journey in autism is seeing how he has inspired so much kindness in so many people. Because of him, I will always take a moment to consider what someone else is going through.

10.  Be thankful. My children have given me new perspective and I am blessed to have been changed in the most wonderful ways. I’m going to remember that when a snack gets thrown across the car or a well-intentioned social story totally bombs.

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Happy New Year

B20DB3F4-EFB9-4FDB-B8C0-21D7197DA1DB.jpegGoodbye, 2018!
Many days this year felt as chaotic, fast and disheveled as the wake of a leaf blower. Or a hair dryer. Or something to that effect.
We untangled the idea that life can be good and hard and messy and beautiful all at the same time.
I’m so thankful for this blog. It has become the safe place for my midnight ramblings and daydreams to live, the avenue to organize thoughts, put together our puzzle, vent, praise and celebrate our sweet boy.
We are so thankful for the support we’ve felt from friends near and far, old and new.
Looking forward to continuing the climb in 2019.  Forward and up.

Christmas Magic

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This Christmas was special. We got to spend so much time with our friends and family. My cousin Tony even welcomed his baby boy, Max, into the world all the way over in China as we kicked off our celebrations in Oregon last weekend.

Our kids really brought the Christmas spirit to life this year. I don’t think we knew what we had been missing in previous years. I’ll admit, I have been quite Scrooge-ish in the past because, honestly, trying to get Wilson to engage and care was just exhausting. 

A few years ago, we could barely get him interested enough to open a present. Even the kind in a gift bag with one piece of tissue on it.  This year, however, our main struggle was stopping him from opening every present he came upon. 

Yes, this year was different. Both Wilson and Charlie wanted all the Christmas music (except Silent Night, for some reason that’s a hard NO for Wilson), holiday shows and books, and even waved “hello” every time we passed all the Santa decor that adorned the neighborhood yards. Our tree lights were lit for their every waking minute and the countdown to Santa and our extended family’s arrival was discussed daily. 

Charlie’s face when she realized that Santa ate all her cookies and the reindeer ate the carrots, too?! Priceless.

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The excitement in her sweet voice when she told everyone that Santa gave her a new toothbrush in her stocking? The cutest.

Wilson used to prefer to be alone, and this year he wanted to be on top of everyone, spreading happiness and probably a few bruises, too (he does NOT. Slow. Down.)

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He not only obliged us in wearing matching Christmas jammies (long sleeve! (Thanks, auntie!)) with his sis but he insisted on wearing them for days!?

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We had our share of struggles, and there were some memories made that Wilson was noticeably absent from. We are still finding a balance of when and where outings can be successful for him.  Tears were shed at one point or another by most of us, but all the beautiful, messy magic is what’s still weighing sweetly on my heart, even days later. 

Who knows, maybe next year we’ll even be ready to take on this Elf on the Shelf madness.

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Sensory-Friendly Santa, we are so thankful for you.

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Wilson was so excited when we told him we were going to see Santa.  He had done well with this same visit last year.  Our local mall allows appointments for children who struggle with sensory processing to be made before the mall opens for the day. This means no crowds or long lines and it’s calm and quiet. 

There is a super easy-going Santa and patient elves and you don’t have to explain any behaviors to anyone. Honestly, without this sensory-friendly option, we wouldn’t have attempted a Santa visit.

Wilson allowed us to put him in his nice (uncomfortable) clothing, even including his adorable reindeer sweater even though it had long sleeves and he hates wearing long sleeves.

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When we got out of the car in the nearly empty parking garage, we heard another family returning to their car with a toddler in tow who was in the midst of a knock-down-drag-out-screaming-meltdown. David and I looked at each other, and we smiled. I’m not sure why, I know that reaction seems horrible.  I think it’s because that has been us. That is usually always us. It’s funny how something so simple can immediately make you feel less alone.

We were a little early, so the kids played on the outdoor play structure while we waited.  The dreaded wait. Our boy struggles to wait for anything. Waiting means time and opportunity for that pesky, fun-sucking anxiety to sneak into his sweet little body and basically ruin whatever the wait was for in the first place. 

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It didn’t take long and he was done.  He started screaming, which was surprisingly loud in the nearly empty mall. He ran over and kicked a sign, then a wall. Kicking?  I remember making a mental note of this new behavior.

Saved by Santa, it was our turn to enter his little living room.  Once we were inside, the jolly man in the red suit might as well have been invisible. Wilson was compulsively searching for a train, I’m guessing one that he saw last year, which was not where he had left it.  It was all he could focus on. In his mind, and in his world, things were just not right.  His memory and intense preoccupations are truly incredible. And frustrating. 

This is autism.

The rest of his day was blown. It was spent counting, sorting and repeating phrases he has learned from shows in attempt to create order and reorganize himself.

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I had seen that going much better in my head. I found myself wondering if these kinds of outings are even worth it. 

Without this sensory-friendly option, we wouldn’t have come. We would have missed playing on the playground and this adorable photo that, even with the stressful memory attached, still shows a boy who has made SO much progress.

We’ll be back next year.

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Our Tribe, I’m So Thankful for You

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and an autism mom, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind and generous humans who constantly offer their support.

Our friends and family and friends who are family, you open your homes to our curious five-year-old to redecorate, climb on furniture, your laps and shoulders and oblige him in his relentless requests to be chased in circles.

You continually say “hi” and attempt to engage with our little man, even when you know he will likely not hear you and walk on by.

Somedays he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.

I am so thankful for you.

His teachers, behavior interventionists, doctors, therapists and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.

I am so thankful for you.

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His BCBA, you were the first one to tell me that it was going to be OK and make me believe it. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

I am so thankful for you.

His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

I am so thankful for you.

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The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

I am so thankful for you.

All of our friends, family and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story. You encourage, support and lift us. When you share our story you are spreading autism awareness and acceptance.

I am so thankful for you.

Charlie, aka little sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also love, include and protect him. You aren’t afraid to get right up in his face so he sees you, so he hears you, and you would never go to sleep without giving him a hug goodnight.

I am so thankful for you.

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Our little one’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.

You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well.

You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

I am so thankful for you.

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My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still I pray for more every single night.

You have forced me into a vulnerability like I have never known, and shown me all the amazingness that follows such a leap.

You’ve shown us how hard your world can be. Through frustration, pain, confusion and sleep deprivation you are still so happy in your soul. You’ve shown me this is not only possible, it’s just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

Wilson LOVE