Birthdays and Autism

 

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My little ONE-year-old

As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.

In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.

My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.

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Wilson’s First Birthday

I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.

One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.

Parents: if you can relate to this, I want to remind you to hang in there.

Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.

This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.

He was so happy.

He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.

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This is SIX!

Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.

We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.

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Great Grandpa’s Birthday

We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.

I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.

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Progress will happen. It just might look different than you had imagined. Be careful not to miss it.

Your child will grow and change. And you will too.

You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.

I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.

Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.

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Joy ❄️

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Check out this HAPPINESS

Once again, a huge thank you to locations that provide Santa visiting hours for kids with sensory processing difficulties.  The kind Santas and whoever this totally awesome person was in the bear suit… heart and patience like yours mean more than you know to families like ours.

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Wilson was in awe of Santa’s cottage, of course after he checked on a few of the toys that were out of place from last years’ visit 😊#incrediblememory

This kid was absolutely GIDDY dancing with the holiday bear. They tickled and cuddled and Wilson said a completely unprompted “thank you, bear!” When it was time to leave. ❤️ #fullheart


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Malls, crowds, lights, lots of noise and unpredictably cause Wilson’s anxiety to rapidly escalate. Without this opportunity in a calm and peaceful environment, we wouldn’t have had the chance to see this wonder and joy in him. ❄️

This absolutely made my holiday season!! I think it made his too 😊🎄

click the photo below for a sweet video! ❤️

 

Happiness

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If I could just freeze this moment in time… 🙌🏻 This HAPPINESS. It’s so fleeting most days. Anxiety, communication disorders, sensory sensitivities, rigidity, repetitive behaviors… they all get in the way of THIS.

All of us are confused and scared about how this world operates. But for our little guy…it is so inexplicably complicated and overwhelming EVERY SINGLE DAY.

I try and see the world through his eyes and sometimes it’s beautiful, like when he stops to dance with his shadow or says “hi” to strangers.  He is wildly uninhibited and I adore that about him.

Then there the times when it is bewildering.  So unsettling and overwhelming that I cannot even bear it.

I just want him to be ok. To live right here, in this happiness. 💙

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Soulmates

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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.

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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!

 

Sibling LOVE

 

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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