Left out

Happy World Autism Day!

Take today and be an encouragement to someone you know and support these exceptional kids!

Jude spontaneously stopped sleeping through the night (in his bed) a year ago. He started getting up two, three, five times per night. His obsessions with certain things started to surface at this time: among other things…Cars. ALL the cars. He started watching a YouTube channel of a man un-boxing hot wheels cars and giving the make & model. He has hundreds of cars memorized. “1960 Corvette” “1983 Honda Civic” “1950 Chevy 5-window”. It’s honestly astounding and if he asks you what the make/model is and you don’t know, he gets very upset. These were common occurrences in our house last year:

Scenario A: (holds up Hot Wheels car)

Jude: Mommy, what’s this?

Me: I don’t know, maybe a mustang or challenger?

Jude: NO!! NO!! What are you talking about?!… I ask daddy

Then he would run to our Nest doorbell camera, ring it, wait for Joey to answer and hold it up to the camera to ask Joey the correct make and model.

Scenario B: 3am. I’m asleep in our room. I’m awoken by the sound of my bedroom door slamming.

Jude: Mommy… where is 2017 Dodge Challenger RT?

Me: I have no idea and also GO BACK TO SLEEP

Jude: Mommy, you can do it… ok go get it… Where is Dodge Challenger RT? (repeat 4x)

Knowing he would never go back to sleep, I walk the steps up to the play room, where we have BINS FULL of hot wheels cars. I stand there, half asleep, while he digs in them for 2-3 minutes.

Jude: OH THERE YOU ARE 2017 DODGE CHALLENGER RT!

With the Challenger safely in his hand, I put him back in bed, fully knowing that in about an hour, he’ll be back down asking for a new make/model and we’ll be back to dig through those ridiculous bins when it’s still dark outside.

This is when I was introduced to the world of perseveration, or the act of perseverating.

According to Understood.com, “Kids who perseverate aren’t being defiant or stubborn. They have specific challenges that cause them to get stuck. They might struggle with managing stress, processing information, shifting attention, or being able to put the brakes on certain behaviors or thoughts. They simply can’t “move on” to something else, until what they are obsessing over, or concerned with is completed in their mind.”

I’m not gonna lie, this particular aspect of Autism is infuriating to me. I truly can’t fathom, what would drive someone to leave their warm bed, climb a set of stairs and dig through a bin, until you find THAT ONE car. But to Jude, when he wakes up thinking about 2017 Challenger RT, he cannot (his brain won’t allow) fall back asleep until he completes this. It doesn’t matter that there are literally hundreds of other cars in his room (and honestly 5-7) in his bed, within reach… He needs 2017 Challenger RT to relax enough to return to sleep.

When he wasn’t speaking much, this made his perseveration extremely challenging. Imagine a kid being obsessed or consumed with something they can’t tell you or explain! It was like living in an awful version of the movie National Treasure. My entire year was just clues… no real direction or clear instructions, just Jude-clues. He would master one word, or a 2-word clue (such as No This!) to try and communicate to me but it was still a draining scavenger hunt for information and answers.

I would try and give him what he wanted, or change what was bothering him (while he’s screaming and melting down) not really understanding that he was perseverating on something I had NO IDEA was even in the picture. Lump on the SPD issues (tags on clothing, elastic on pants, food textures, certain sounds, balloons, bells and whistles, certain shoes, zippers, nail clippers, toothbrushes, etc) and the combination was nearly unbearable. (Insert the scene from Turner and Hooch: Tom Hanks screaming WHAT?! What do you want?! You tell me… what am I supposed to do!?”)

By April 2017, Jude had 2 PIC teachers, speech therapist, occupational therapist, BCBA and 2 ABA line therapists. You do the math. That

means, on any given day, anywhere between 3-5 people were working with him. From 7a-7pm, there was almost ZERO “family time” with just us. 5 days a week, he had school, and 6 days a week we had ABA therapy.

This time frame can be summed up with one banner: a life I never imagined. I truly couldn’t believe what my life looked like during 2018. I didn’t even recognize it.
The life, I knew, was gone.

It was frustrating, defeating, lonely, maddening, infuriating, rewarding, exhausting and about a hundred other emotions. Prior to our son being born, I could count on 2 hands the number of times I’d cried (outside of funerals), but I cried ALL.THE.TIME. last year. Almost always by myself in private; some were angry tears and more were from pure exhaustion, but most were mourning the loss of what I thought motherhood would be like and the life I envisioned, since I heard “it’s a boy!”.

THIS was not it.

I would look around at the pieces of my life: a visual schedule, prompt hierarchy chart, token board, weighted blankets and vests, visual timers, occupational therapy tools and toys, flashcards, data sheet, therapist time sheets, endless insurance paperwork, a rigid packed schedule of appointments and therapy and I just wanted to SCREAM.
While my friends enjoyed their first soccer seasons, swimming lessons, Christmas programs, and field trips etc. I was using a token board and about 400 skittles to get Jude to put on pants.

I recently wrote a post for the “Encouragement from Women Who Have Been There (EFW) Blog”… This is an excerpt from that post:

I glanced down at my phone and read the post of friend who was complaining about her “rough morning” that involved her kids and some water play in the bathroom with some a cliché ending like #sendcoffee… I rolled my eyes so hard they hurt. I sat there typing a comment and deleting it for several minutes, ending with no comment. Instead, I hit “unfollow” and closed my phone. Send Coffee? REALLY?? Give me a break…

I would LOVE to just be cleaning up some tiny puddles in the bathroom. I thought over my week with Jude: still only sleeping about 4 hours a night, destroying nearly everything he touched in our house, still not able to play alone for even 1 minute…

This particular week, Jude smashed a porcelain pedestal, that I loved, on our deck, in the 10 mins it took me to blow-dry my hair, smeared at entire tube of neosporin on my pillow and my personal favorite, threw a huge handful of “slime” into a basket of clean laundry that I found a day later—ruined, dropped a toy bubble-mower, over the balcony sending liquid bubbles everywhere and the list went on and on.

I have never been one that really does the comparing thing—it’s not my style. But 2018 brought so many unexpected changes in me and challenges to my life, that all of the sudden, out of nowhere, there I was! As the gap between Jude and his piers continued to widen I started to sink deeper into the trench of animosity. As you watch your friend’s kids engaging in the “normal” activities of life and you’re buried in therapy to teach your child something that should be so easy, all of the sudden you’re exactly where Satan wants to you—you are in a perfect position to become bitter; and this type of bitterness holds hands with jealousy and contempt.

I was weary. I never slept, still working full time, and doing 25 hours of ABA therapy with Jude per week. I was growing more resentful of people with “easy/normal” children by the day. Even people I LOVED, with their children, whom I also loved were starting to frustrate me.

For about a year now, Jude has not slept through the night, in his bed. He will either start in his bed and come down to our room multiple times a night, get up for the day at 4am, or we give up and let him sleep in our bed. As a result, I live in a constant state of sleep deprivation, which by the way, is the oldest form of torture used worldwide. There are nights here and there, when Joey and I change things up and sleep with him, or we separate into different rooms, but overall, I function with getting up 2-3x per night. It’s like having a newborn, if they could kick down your door.

This was truly the first time in my life, I ever experienced the feeling of “envying someone else’s life”.

Also (not that I can recall) I have never felt “left out”. That’s not to say I haven’t been left out of things, I’m sure I have, I just never cared. Then 2018 came.

In October, I was sitting in the glider in his room, rocking him to sleep, when a picture flashed across my Facebook wall. It was posted by a neighbor. It was a photo of all the little neighborhood kiddos, who were Jude’s age, on her porch eating popsicles. I am friends with this neighbor and she always makes an effort to invite Jude to stuff for her son, and they play together semi-frequently. Sitting there rocking my son, I felt something for the first time—Left Out. And this hurt way worse than me being left out of something—Jude had been excluded from the group. I was so sad for him. Mind you—he had no idea—and frankly would not have even cared—but I knew and I cared.
I know Jude is very challenging and hard to control, hence there aren’t many play date invites, but this mom was not like that, so I decided to text my neighbor to make sure I wasn’t missing something.

Her answer made me even more sad…

She explained that it was a total “spontaneous” meet up as all the kids were riding their bikes by her house and it spilled over into her backyard and ended up on her porch eating popsicles. She also said she was so sorry for not texting me and including Jude and asked for forgiveness.

Please get this part: My neighbor did NOTHING wrong.

There was no reason for her to apologize or ask for forgiveness (although super kind of her to offer that). There was no prior conversation, between the moms, where it was decided not to ask Jude, because he’s so challenging or he’s a bad example to their kids (his meltdowns often look like temper tantrums and he says really “inappropriate and mean things” bc he lacks understanding and social conscientiousness). There was no plan to leave him out, under the guise of “it’s just easier without him”.

He was left out, because there was no way that he would be part of an impromptu meet up of his neighborhood piers, for so many reasons, and that’s what stung.

Jude would never be just riding his bike in the neighborhood with his little buddies. He could never just, on his own, transition from bikes to playing in their backyard. He would NEVER in a million years eat a popsicle (nothing frozen is one of his “no this” rules).

Besides the fact that he was in therapy for 4 hours every afternoon, when these kids are playing with each other, there would be no way (in the foreseeable future) that he could ever be unsupervised with other kids. THAT’S what hurt. My son was being left behind from this awesome stage of life, with a neighborhood packed with kids his age, because of his differences. For the last 18 months, Jude’s life has been school, then therapy, repeat. Mom guilt—party of one.

Time for a tip! This seems fairly obvious, but honestly, I don’t think I would have really put much thought into this, prior to Jude.

INCLUDE your friends with special needs kids in your plans.

Even if you know they can’t or won’t be able to do the activity—ask them anyways. We already know that our kids are tough in social situations, and yes, they’ll likely have meltdowns and struggles at your party or activity, but if you give us lots of notice, we can take the (many) steps to prepare for it, and possibly have a great experience. Our kids need practice… lots of practice… in social settings. Why shouldn’t it be with kids and people they know and friends you love? Is there a chance it will go badly—ABSOLUTELY (Jude almost ruined a gender reveal party 2 years ago when he shoved his hand in the colored cake) but that’s ok. We know when we should exit a situation and we know when we should ultimately not even attend, but we still want to be asked! Not for us–for our kids!

This is a recap from one of my favorite parts of the book, Refresh by Kimberly Drew:

The author’s daughter has Cerebral Palsy and she’s non-verbal and in a wheelchair. She writes about her good friend, with whom she was pregnant at the same time and they both had baby girls. That’s where the similarities ended for them, as her road with her daughter with CP went in the opposite direction. Read her words, carefully…

“One second I was smiling, as my friend told me about her daughter’s ice-skating birthday party and the next moment, it occurred to me that our girls are the same age, and had Abbey not been disabled, she’d be skating right along. I’m not sure at what point my grief and sadness turned to anger, but below the surface of my smiles, and almost 4 years of friendship, my heart was still broken that it didn’t occur to my friend to invite Abbey along. Since then, my friend and I have cried through these issues together. It was an opportunity for both of use to learn to truly love and forgive each other like Jesus.
Abbey is 14 years old now and has a Sunday school class full of girls her age. I have lots of friends outside of church with daughters who are also Abbey’s age. We do not experience the same things with our girls, but that doesn’t mean we cannot do life together.
I wonder often what my role is supposed to be in making this happen. I’ve cried over feeling forgotten or left out on so many occasions that I can barely type through my tears. It’s a delicate situation when your child is disabled, because you don’t want to force friendship on anyone. Children aren’t comfortable with Abbey in social interactions and I’ve never felt it was fair to ask a child to be her friend if she/he didn’t want to…but children just need to be taught HOW (to befriend and include special needs children)…It hurts that other parents haven’t done this with their children.

Proverbial mic drop.

It’s very appropriate that today is April 2, which is World Autism Day. Additionally, April is Autism awareness month. Echoing my last post, I will not argue about these items (shockingly, the community fights about the word “awareness” and the puzzle piece logo, etc.). All I will say is awareness is great, but only if it leads to understanding and acceptance. I was definitely “aware” that autism existed prior to 2017, but I clearly didn’t understand or respect it. I certainly judged parents who’s kids were “pitching fits” in public and even made fun of socially-awkward people who most absolutely had autism.

So, awareness is not enough. Learn about it! There are so many good aspects if you put in the effort to learn and understand it. Teach your kids small ways that can make a huge difference for these special kids.

The puzzle piece—personally I love it because it adequately represents how it feels being Jude’s mom. He is a HUGE puzzle that must be put together to understand. One piece of a puzzle is nothing—it doesn’t show you anything—in fact, by itself it makes no sense at all.

Autism is just one piece of Jude.

He’s also athletic, funny, social, enthusiastic car collector, empathetic, problem-solver, resourceful, adventurous, and a huge encourager.

I’m super excited about the next series of posts and if you have a husband, boyfriend, dad or grandpa struggling with an exceptional child, or their diagnosis, you’ll not want to miss it!