Monthly Archives: June 2018

Thank you, Daddy

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David and Wilson

Wilson will follow you wherever you go. Around the yard for hours, mimicking you shovel dirt into the wheelbarrow or turn screws with your tools.

You encourage him to try new things and to not give up when the unknown seems too scary or difficult.

He has your tender soul.

You’re there to exchange a knowing glance with me when the kids do something new, impressive or just plain awesome.

You also know when they’ve had enough and it’s time to go.

You make sure we all have fun, especially in the times when I tend to be more concerned with handwashing and sunscreen.

You have patience when mine has run out.

You’re always up for a dance party and teaching new moves. You’ll even listen to Moana on repeat because it brightens your little girls’ eyes.

You’re proud of every new step, no matter how big or small.

You do all the heavy lifting, from the tantrums to the veterinary appointments.

You’ve had to miss out on a lot, removing Wilson during meltdowns or following him as he wanders.

Your heart is so patient.

I know you would do anything for our family.

Thank you will never be enough.

We’re so lucky to do this wild and crazy, sometimes difficult, beautiful life with you.

 

 

Finding the Courage to Try

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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

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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