Category Archives: Inclusion

growth, change, & autism

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One clear memory from Wilson’s autism diagnosis evaluation has stuck with me.

We sat in a stark room with no windows. The psychiatrist had brought out one activity at a time, then locked them up in a cupboard once they were done.  I vaguely remember a baby, and a pretend birthday cake, and so many blank stares and unanswered questions.  

I sat quietly in the corner as they had requested. No jumping in to answer for him or prompt and encourage him.  The psychiatrist asked me to call his name from across the empty room. 

“Wilson.  Wilson. Wilson!” 

Nothing. He didn’t even turn his head in my general direction.

He wasn’t distracted by toys, which was the reason I had convinced myself he didn’t usually respond to my calls for his attention.  He just casually looked at the doctor, then around the bland room.

It truly seemed like he could not hear me. But we had already been to all those specialists for all of that testing by the time we landed in this office for this autism spectrum disorder evaluation. He could hear perfectly fine.

The psychiatrist asked me to do whatever it is that I do to get his attention at home. So, I said, “Hey buddy!” and eventually walked over and touched his shoulder.

I told her we wondered if he thought his name was “Buddy” since we called him that so often.  Maybe that was why he didn’t respond to his name yet.

Hope and denial and acceptance ran murky lines during those first few years.

Fast forward five years, and I must tell you this boy doesn’t miss an opportunity to say “Hi, Mommy!” or run to the door to say “Hi, Daddy!” when he hears his dad’s truck coming up the driveway.

Change happens. Growth will happen. It may look different for each child, but we will all see it, and we will all feel it.  We will all go through the phases we cannot wait to get out of and the moments we want to freeze in time.

So proud of how hard this boy has worked for all his growth.

For Wilson’s Tribe

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While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and the mother of an autistic child, 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 and lift this family up.

Our friends and family and friends who are family, you open your homes to our curious boy 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 you will likely not hear a response. Someday, 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. 

His teachers, behavior interventionists, doctors, therapists, and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.  You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

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.

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.

All 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 helping us achieve inclusion and acceptance.

Charlie, aka Sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also unconditionally love, include, and protect him. You aren’t afraid to get right up in his face, so he sees you, so he hears you. He feels how much you love him; I promise you.

Wilson’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.

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, but also just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

To the Mom of a Child with a Disability this Mother’s Day

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I am thinking about you today.

I want you to know that everything you do matters.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough.  There may have been no progress made with toileting, feeding therapy or communication today and that is okay.

Your child is safe and so loved.

The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.

The research, the meltdowns, the battles over chicken nugget brands and clothing choices, all can withdraw every ounce of patience from your soul.

The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow.  Years later, they remain in your child.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.

But they know you are Mom.

Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.

I want you to know that you are not alone.

When your patience has been depleted.

When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light. 

The loneliness you have felt from the long days spent with a child unable to read your emotions.

The difficult medical and educational decisions you struggle to make.

Know that there are so many of us with you.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

I want you to find hope.

Today let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears.  With so many unknowns in the future, know that it’s going to get better. 

I know this because we will grow stronger.

We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved. 

I am so thankful for this sisterhood of amazing mothers today and every day.

Have a very Happy Mother’s Day.

remember my boy

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Explaining autism is hard.  Understanding the complexities inside of my sweet boy can feel like trying to catch and examine the wind.

If there is one piece of autism awareness I can leave you with this month, this would be it:

The next time you are stuck at the grocery store, irritated with the man at the front of the growing line because he keeps chatting with the clerk, think of my boy.

The man might be verbally ruminating about new soda flavors he saw on tv or explaining his frustration that the store is out of the only bread he eats. How it is very important because he eats this bread for every meal in his day.

He may also bring up the triangle-shaped crackers he saw on aisle seven. For him, this is so silly because crackers really should be square.

He’ll fumble with his money.  Something that seems so simple for many but for him, this has taken intentional practice.  He carefully counts and counts again.

He’ll often adjust his big, bulky headphones. At first, you probably thought he was listening to music, but they are there to block out the unwanted sounds, squeaky grocery carts, fluorescent lighting, beeping registers, that kind of distracting thing.

When he moans, chats to himself, and waves his arms, he is growing more uncomfortable and overwhelmed in this busy place. Moving his body and voice this way helps him stay calm.

Remember by boy.

Because one day, this will be him.  While I don’t know exactly how he will behave, I do know he will be processing a lot just to be there.

I know he will have worked hard for years to be in that line alone, and I will be so proud of him for this.

I’ve seen him work harder than most for his entire life just to participate in this world. This work began long before his autism diagnosis at three years old or before any of the accompanying anxiety, sensory-processing disorder, and obsessive-compulsive behaviors were ever put down on paper and filed away somewhere.

So please, remember this blue-eyed boy who loves pirates, music, and square crackers and whose hard work began when he was a toddler.  The 1-in-54 whose brains work differently like his, they will grow up, and their hard work will remain, too.

Remember that you do not have to see the struggle for it to be there.

As his mother, I need you to be kind and patient with him. I beg that of you.

He works so hard.

autism: the beginning

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“STOP FOLLOWING US, BABY! Why doesn’t he talk? He’s a BIG BABY! AHHH!!! Run!!” 

I watched as the two older boys screamed these words into my son’s face at the otherwise-empty playground.  They couldn’t understand why a kid my son’s size wouldn’t talk or pick up the clue that they didn’t want him around, even after it was screamed into his face.

My sweet boy had recently been diagnosed with autism. He had limited verbal skills and a spirit so big and bright. He laughed as the words were screamed in his face and continued to chase the boys who wanted nothing to do with him.

The boys’ mothers were deep in conversation at a table across the park. Once or twice, they called over something along the lines of “are you being nice?” and got right back to their conversation.

I can still feel the tightness in my throat as I fought with all my being to not cry. The tears poured down from behind my sunglasses. I stood there alone, praying for the mothers to notice my special boy and intervene in some way. Occasionally, I choked up a few words to try and redirect my little man to another part of the playground.

I had no words that day.  I was fragile, still processing this new world of autism and what life ahead was going to look like for my boy. And that afternoon just broke me.

This was the beginning.

Luckily, my son did not feel the pain of exclusion that day.  I know it will not be that way forever.  He understands so much more than he can say, and he feels so deeply.

Now, I would know what to say, and I wouldn’t wait on strangers to say the right thing for me. But it sure would have helped this mother’s fragile heart if those boys had learned a little about differences, kindness, and inclusion.

April is World Autism Awareness Month.  When we advocate for autism awareness, really, what we want is kindness + inclusion. That is what really matters.

Learning about and celebrating our differences and those of others can change everything.

Always Presume Competence

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-Nonspeaking does not mean a person cannot communicate, understand you, or that they don’t have feelings.

-Please drop labels like high/low functioning. Would you want to be talked about that way? Instead, you can say, “Tell me more about your child.”

– If a person is not making eye contact, or moving their body in a unique way, do not assume that they are not listening. In fact, that might be HOW they are able to focus on what you are saying. 

This was the first time I saw Wilson write his name. At the time, I didn’t know he could do it. In fact, I didn’t think he could do it.

I can’t believe how many times I have underestimated this boy.

If you think he looks proud, you should have seen me.

autism & awareness

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Oh April, Autism Awareness Month.

I have mixed feelings about you.

You see, I am never unaware of autism.

When I answer the same questions 1,980,674 a day from my little boy with autism, it’s impossible to be unaware.

Or when I help him go over his schedule 630,238 times a day. My husband looks at me and says, “It’s so bad right now.” He means the OCD behaviors. That is just a bonus thing to be aware of with an autism diagnosis. Anxiety is right up there, too.

Yes, then I am very aware.

My boy with autism. Or my autistic boy. This is a very important thing.

One is a person first, after all, he is a boy who just happens to have autism. 

The other is an all-encompassing identity worn with pride. 

I wish we didn’t have to choose. Can’t it be both? I want both for him.

There is no right answer, but people will tell you otherwise each way you choose.

Maybe someday my boy will tell me his preference.

Just like someday he will answer his dad when he asks him what he did at school that day.

Every day he is met with silence and a smile. Some day.

A lot of autistic adults really want to skip the whole awareness thing and have everyone move right on into acceptance. That sounds ideal to me, but I really don’t see how one can happen without the other.

So, we talk about autism to spread awareness.

It does get a little exhausting, I will be honest.

The repetition, the hope, the advocacy on eggshells.

But I get excited, thinking about more people joining in on this awareness thing. 

I can start to see a world where communication without words is commonplace.

And maybe things like atypical eye contact wouldn’t be a thing, and maybe parents like us wouldn’t hear that word, ATYPICAL, so damn much.

In this world I see, people would understand that sensory processing is so different for everyone. It can be downright painful for some, and never given a second thought by others.

People would be better about not taking the little things in life for granted, like outings outside of the home that for some, like my boy, require navigating a battlefield of anxiety, sensory input, and communication barriers.

They’d know that nonspeakers still FEEL greatly.

There would be just enough awareness for people to be kind and patient with those who are different.

Yes, that world would be so nice.

the weight of hope & autism

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“Will Wilson still have autism when he’s all grown up?”  My little girl asked, continually curious and looking out for her big brother.

“Yes, he will,” I told her with a smile.

<enter her look of pure shock>

“But! How will get married? His girlfriend won’t understand him!”

Sometimes these conversations are hard.  

They can be beautiful moments of learning about people and their differences and all the reasons we love and celebrate uniqueness.

They can also knock the wind right from your lungs when you least expect it, while in line at the grocery store, or in the stillness of a bedtime routine.   

When your child is born, you know you’d stand in front of a bullet or a train for them. What you don’t realize is that it will likely never be that simple.

Hope in the world of parenting and autism can be heavy. 

It’s like invisible, antiquated body armor you pack on each day. You always feel the weight but know you need to carry it.

There are days when it’s just easier to set it down, to rest. And that’s ok.

Sometimes you need innocent conversations with a five-year-old to remind you to pick up your hope and keep going. That the weight is worth it. 

“Of course, he can get married! He is learning more and more every single day, just like you are, sweet girl. He just learns in a different way.”

I’m carrying hope with love and confidence today. You can bet if I ever set it down, it will not be for long.  

this brave boy

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Who do you advocate for?

Autism moms came together by using their voices this month to demand justice for a child with autism who was abused at his school by a teaching assistant. 

These stories are becoming too much. Children with disabilities are all too often being kicked off airplanes, out of restaurants or church, abused at school or in their own homes.  Each new story stings as much as the last, like thousands of tiny papercuts while watching the evening news.

With each one, I glance at my bouncy, blue-eyed, happy, innocent boy. How could anyone ever treat a human that way? 

With each story, I pull him in a little closer. Silently renewing my vow to protect him from the evils of this world.  

The school district failed to hold this abuser accountable, but our voices were heard. The teaching assistant has resigned.

When people come together, change will happen.

The incident prompted one autism mom, a documentary filmmaker, to reach out to us bloggers to submit a photo of who we advocate for in our lives and communities. You can watch the video via the link below.

I am truly amazed by the power of community.

I also believe that ONE voice can make a difference.

Will you tell us who you advocate for? It can be anyone; a child, a student, a relative, or yourself! Tell us one thing that you wish people would know about this person. Post it in the comments below.

I’ll start. This brave boy. I want people to know that people with autism understand so much more than they may be able to express. They are human, they feel deeply. 

So be kind, always.

link to video (you may have to copy and paste it to your browser):

https://fb.watch/3PEtKfP9gM/

my son has autism & he is wired wonderfully

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“He’s just wired differently.”

We heard this phrase often in those first months after Wilson’s autism diagnosis.  We were trying to wrap our heads around this world of autism in which our son was living.  It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable.  Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time.  It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.

Wilson is a typical boy who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy.  He loves anything and everything to do with pirates, trains and keys.

What makes him so different? This is where the wonderful comes in…

He is absolutely enamored with his shadow and reflection. Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.

He says, “You’re welcome!” whenever someone on the television says “thank you.”

Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.

Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.

Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood.  There were times it felt as though he would just repeat me forever.

While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.

That one single word fed my soul so much hope that night.  It seems so simple, but for him, it was a remarkable step.  I remember every single moment of that exchange, and it was nothing short of wonderful.