Finding the Courage to Try

bubbles pic

Group activities for children on the spectrum can be hard. So far, we’ve had to pull Wilson out of swim school, soccer, and community preschool. Even birthday parties can be tricky. Wilson is so excited to be there, but he wants to open the presents and blow out the candles no matter whose special day it is. He cannot understand why someone else would get to do that instead of him. This was easier to manage when he was a toddler, but he is getting bigger. And louder.  I’ve tried bringing a present and treats for him as a distraction, and even a set of candles so he could have a turn to blow them out after the birthday boy or girl.  This hasn’t done the trick. We’re on high alert for the birthday song to start so we can redirect him before he potentially ruins a three-year-old’s special day.

When we attend events as a family, we typically divide-and-attempt-to-conquer and end up separated the whole time. One of us is constantly on the move keeping a close eye on Wilson, the persistent wanderer, and the other stays with Charlie, who is usually participating with the others at the event.

Wilson’s former preschool had a Mother-Son Game Night the other night. Typically, we do not attend these kinds of events anymore. I receive invites or hear about them from friends, with my immediate reaction being “this isn’t for us.”  I feel sad for my son, that because of his autism he simply cannot participate in these fun events like the other kids his age.  I briefly feel sad for me, too, and then I move on.

Wilson LOVE shirt

This game night stayed on my radar. I received reminder emails, saw posts online, and several friends asked if I was going. My answer remained a pretty hard “No.”  I am ashamed to admit this, but I actually toyed with the idea of going without Wilson. Just so I could visit with my mom friends that I hadn’t seen in so long.  I knew Wilson would not be able to participate but I was sad that meant I couldn’t see my friends either.  These are the times our life with autism can feel isolating.  I am so thankful for my sweet friend who encouraged me to bring Wilson (and didn’t judge me for considering to leave him at home!)  She said her son would love to see him and they would have fun running around.

I knew what would really happen. I would chase him the whole time, try to contain his curious mind from getting into everything, touching anything, and taking people’s things. I would attempt to quiet his shrieks and screaming as people stare (for the record, I do not blame people for looking, his screaming is impossible to ignore but the glances inevitably fuel the feeling of inadequacy for the inability to have control of my child.)  And any hope of a smooth exit? Not a chance.  This is why this kind of event is just not worth it.

But this time, it was.

We went, armed with tools from Applied Behavioral Analysis Therapy that we had been working on for the past few days. I had a little white board, flash cards, and snacks for incentive. Wilson sat down and earned stars by answering social and basic vocabulary questions that he had been working on in therapy and at home.

star chart

flash cards

Once he got five stars, he got to do what he wanted, which was DANCE!  We did this little routine several times over. He was so proud of every star he earned and excited to go run and dance on the stage in the school’s auditorium.

Wilson Dance

We left before the real games began but we stayed much longer than I expected we would. When it was time to go, I told him he had earned his favorite snack and we would eat it in the car on our way home. I prompted him to say “goodbye” to some of his peers, he did, and we calmly walked out, hand-in-hand. I was so proud of him.

I was reminded that night that it’s easy to give up, to stay home. It takes hard work to face obstacles and learn from them.

I am not saying we’ll be going to every single event we come across. Not by a long shot. Our life is still about balance and doing what’s right for Wilson and our family. I want to find the courage to do more though, and to never underestimate my little man.

Wilson Dance 2

 

Soulmates

EmmettFamily-11

Sometimes when I look at my son, it’s like he is not even there. The happy, sweet boy that we are learning to connect with is missing from behind his bright blue eyes. He’s completely lost.

As a parent, trying to manage a meltdown from a child on the autism spectrum is incredibly difficult. But to actually experience that meltdown? I can’t even imagine.

Wilson’s sensory reactions and how much his developing system can handle can be so unpredictable. His ability to understand and follow instructions has improved, but when coupled with a new environment and tons of stimulation, he completely checks out.  We cannot communicate or reason with him. He throws himself to the ground, pushes, pulls, screams and attempts to run away.  He experiences fear, sadness, anger, confusion, pain and all his senses overloaded at once.  He really doesn’t know what to do, so he completely loses control.

One of the first experiences I had with this type of meltdown was before Wilson was diagnosed with autism. We were headed into Target one day and I had him and his baby sister in the double stroller. Wilson was screaming and I assumed he would get distracted when we walked in but it immediately got worse.  This wasn’t a whining toddler cry. It was blood-curdling screaming. Everyone from Customer Service to shoppers and the staff at the checkout stands was staring. We did a U-turn and walked right back out the automatic doors. I walked to the front of the stroller and leaned down close to try and reason with him. I’m not sure why, he wasn’t speaking yet and could only understand a limited amount of my words. He screamed and flailed his limbs and his foot made a perfect connection with my jaw like he was some kind of professionally trained MMA-Super-Ninja.

My two-year-old had just kicked me in the face.  We headed to the car, both of us in tears.

We’re learning ways to help avoid or work through these meltdowns. Sometimes, hard as we may try, we just can’t see them coming.

We were on vacation last weekend and wanted to take Wilson to the outdoor mall to ride the children’s train (he LOVES trains). We arrived to find a massive children’s festival. Bounce houses in every shape and size, a petting zoo, miniature golf, firetrucks, and long lines for all of the aforementioned activities, including Wilson’s beloved train.

The screaming began the moment he saw the train and couldn’t jump right on. We maneuvered him to the end of the line, hoping we could come up with some distractions while we waited. The screaming didn’t stop, and we found that we had to purchase tickets for the train at another location in the mall. Both my husband and I were panicked and fumbling.  Trying to think on the fly while your child is experiencing a (loud) meltdown is nearly impossible.  We tried to distract him by visiting the firetrucks, the one area without a line or ticket requirement. The firemen were kind and tried to help calm Wilson by showing him the truck and giving him stickers.  When Wilson realized he couldn’t get in the firetruck, it was game over.  We all left in tears (except for his little sister Charlie, she scored a popsicle out of the ordeal.)

I was so sad for my boy that he couldn’t be there. That he couldn’t understand how to be there. Or withstand the stimulation of all those fun activities happening at once.

born rad

Wilson thrives in a routine so vacations can be difficult to begin with. Every outing, home or away, takes a lot of planning and preparation to avoid incidents like this one. The big meltdowns seem to be growing fewer and farther between, but screaming is still one of Wilson’s main means of communication every day. He screams to protest, to express when he is sad, mad or scared, and to drown out another sound he cannot stand to hear.  Then there are times he does it simply for good old fashioned attention.

I will not lie, it all wears me down.

A friend of mine (and fellow autism mom) sent me this text out of the blue one day:

“Thinking about you as I listen to this (podcast) it’s so good. Hope you are doing ok… Remember you are the perfect mom for Wilson…even on your worst mom days…you two are soulmates ;)”

Soulmates.

I come back to these words often. They have picked me up off of the kitchen floor when I couldn’t take one more of his meltdowns so I had one myself.  This little human needs me. No matter how much kicking, screaming and frustration we go through, it could never take an ounce away from the good stuff.  Every new word, achievement, thought or emotion expressed, every connection made, his sweet hugs and when he giggles as he awkwardly holds my face nose-to-nose with his. Singing new songs, hugging his sister tightly, when I see him brave and proud.

He is mine and I am his and I am so thankful for that.

Mom and kids

 

Charlie

Siblings of people with special needs are exceptional humans who love deeply and selflessly. Charlie has had to learn about patience and sacrifice earlier than most.  She spends more time in the car helping me take Wilson to his various appointments and therapy sessions than anyone would want to, let alone a two-year-old. She does it (most of the time) with a smile on her face and a snack in her hands.

Charlie makes sure to tell me that “Wilson’s screaming” or “Wilson’s sad” (as though I didn’t already know) during his meltdowns and she attempts to give him hugs or bring him a toy or “chewy” to make him feel better. She has so much compassion wrapped up in that little body. She will not go to bed at night without hugging her brother.

Our silly girl loves babies, books and riding in grocery carts (thank goodness!) She is an in-de-pend-ent woman and likes to do things all by herself, which makes me sad, proud and nervous all at the same time. She will NOT be ignored and repeats herself, continuously louder, if you don’t respond.  This trait actually comes in handy in this family.

We ask a lot of her, often with her needs coming second to her brother’s. But don’t let her easy-going soul fool you. She is something fierce. She will not hesitate to b*tch slap a 90lb American Bulldog if she’s sniffin’ too close.

And if you want to mess with her brother, you’ll have to get through her first!

 

I would not change my son for the world.

advocate like a mother

“I would not change my son for the world. I would change the world for my son.” I came across this quote the other day and it reminded me: This is why I share my son’s story.  There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.

Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.  Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people.  I am slowly learning more about the triggers and sensitivities in Wilson’s world.  He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.  He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.  He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.

He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.  Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over.  He gets irritated if we take a different route to therapy or home.  His memory is truly incredible.

When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch.  He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down. People stare and make snarky remarks. Luckily, this only bothers my husband and I. Wilson doesn’t read other’s emotions well or understand the comments.  Someday he will though.

So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.  All children could benefit from a friend to help them overcome challenges and build confidence and self-worth.  Let’s teach them acceptance and inclusion. Let’s change the world.

Wired Wonderfully

812D391C-D6C9-426C-99AB-85E4F34C0BE6

“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 toddler 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. He prefers (aka will only eat) his peanut butter and jelly sandwiches open-faced and cut into bite-sized pieces. He has mastered running away with his pants around his ankles when you attempt to change his diaper.  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.

Sibling LOVE

 

wilson and charlie.school

I’ve found it very difficult to protect my heart when it’s beating outside of my body. These days it’s running around in the form of a little blonde-haired, blue-eyed toddler, in its most vulnerable form.  I’ve wanted to protect my son from the Big Bad World since day one. Most of the time his adventurous spirit would get in the way of the bubble wrapped life I had in mind for him.

Then came his autism diagnosis. How will I protect him now?

Will he be okay?

Will he ever talk? Be bullied on the playground? Or even attend school? Will he have a job? Drive? Live independently? Fall in love? And the spiral to nowhere continued.

As parents, we never want our children to feel pain and sadness. Hunger or cold. Lost or confused. It tears me up from the inside out when I look into my boy’s eyes and see how confused and frustrated he can become.

The other day, during one of his meltdowns, his 2-year-old little sister hugged him and would not let go. Eventually he started laughing because it became a game to try and get her off of him. I noticed something that day. The way she looked at him. It was simple and unconditional adoration.

In her eyes, he isn’t “different”. He is her big brother. Her hero. Her person. I prayed that night that she will always see him in that same light. As time passes, the weight of his world will inevitably impact hers more. New challenges will arise, they both will grow and change, but God, I hope that their unconditional love remains the same.

My children are both unique, and made for one another. I can’t catch them every time they fall down. But I can teach them how to help one another back up. To comfort one another. To laugh together.

My son has a wonderfully badass tribe of family, friends, doctors, therapists, interventionists and peers to help raise him up as high as he can go. And he has her.

So just like that, I had my answer. He’s going to be okay.

Wilson and Charlie