A family's story

Posts tagged ‘Understanding’

Struck a Chord…

I have read several blog entries over the past few days, and a high percentage of them address the latest gaffe by Autism Speaks. This time, it’s the fact that the co-founder wrote a very dramatic, fear-mongering Op-Ed piece in which she likens Autism to a malicious kidnapper that snatches up autistics and steals them away. She talks about all of the negatives associated with Autism. So much negativity. 

As a parent of an autistic child, it upset me greatly to hear that she, the co-founder of an organization that is supposed to be drumming up autism awareness, thinks that making people aware means you have to scare the ever-living daylights out of them. I highly disagree. We can promote awareness without freaking people out!

As the neighbor of a family who is starting to go through the process of evaluation, I am frustrated. I have spent the better part of this year trying to explain that an evaluation is beneficial. That a “label” isn’t a bad thing..and that it is better to know what you’re dealing with than to deny it into oblivion. I have discussed the benefits of therapy and intervention. I have talked about how living with my autistic son has helped me be more empathetic, more patient, and helps me put life into perspective. 

Now, I don’t deny that there are aspects of parenting an autistic child that are not all puppy dogs and rainbows. There are plenty of things that keep me up at night, or worry me. My son is one of those autistics who doesn’t sleep much. We are all sleep deprived. There are obstacles I watch my son grapple with every day, and a little part of my heart hurts (but that is on me, not him). We have had to cut vacations and change plans because we can’t afford it either money or time-wise. We are isolated at times, too. We don’t attend certain school events, nor do we entertain often. There are days when we deal with multiple meltdowns and opposition. It takes a lot of preparation and energy to coordinate things like haircuts and trips to restaurants or the mall. But we do it. In our own way. And in our own way, we are experiencing a rich, happy life. 

We aren’t, as Mrs. Wright suggests, “simply existing.” Hell to the mutherfrackin’ no. We are doing so much more than that. We are living–fully. We are laughing. We are loving. We are learning. And when we know better, we do better. So, “Listen Up”, Autism Speaks. As Marie Curie said, “Nothing in life is to be feared. It is only to be understood.” I think we all could benefit from understanding autistics and autism spectrum disorder better. I see my son, and how richly he experiences life, and I think I’d like to understand how he does it. I’d like to know how his mind works, and why certain things are calming and certain things are so anxiety-producing. 

Stop trying to instill fear, and instead, funnel your energies and time and money to UNDERSTANDING. Listen to autistics. Work with them to understand. That’s going to get us a heckuva lot further than rhetoric and fear-mongering.

*steps off of soapbox*

 

 

 

I get it

This past Saturday our family ventured out to a local AMC theater for the sensory-friendly showing of Despicable Me 2. We even brought Hubz’s parents along for the ride. Originally, Hubz’s parents had offered to take the boys by themselves, but Tate can be a wildcard, so we decided that we should all go. It was a very enjoyable morning.

Tate has done the movie thing enough now to know the routine. We go through the big doors, buy our tickets by the glass, get popcorn and find a good seat. Tate was beyond thrilled that the movie was being shown in one of the big theaters. He chose seats front and center, right off of an aisle. 

He played with my phone and munched on his popcorn as we waited for the show to start. As we sat and waiting for those 5 minutes, we noticed a boy walking around the theater. He would go down a few steps, or walk across the walk way and rhythmically pat his tummy. Step step step….pat pat pat. Step step step….pat pat pat. There was a very definite pattern to it. He wasn’t bothering anyone, aside from the few times he got a *little* too close to Tate’s popcorn, and Tate shooed him away. His mom apologized as she chased after him the one time. I shook my head as if to say, “no worries”. I smiled. I get it.

After the movie, which got double thumbs up from our boys, we all went to Red Robin. We were seated in a corner booth, and Tate arranged himself so he could have a view of every ceiling fan in the joint. He also had to have the end seat. It’s his thing. 

We asked for some fries to tide us over as we waited for our meal. The waitress brought them out with our drinks. We have found that if we get Tate a little sample of what’s to come, he’s content and much less likely to get overwhelmed by anxiety about when food will arrive. 

As Tate, Jake & Cole inhaled the fries, a mom and her two children were seated at the booth next to ours (behind Tate). They had been there for possibly 5 minutes when Cole announced that he had to use the facilities. As my four guys headed out of the booth, the little boy in the booth next to ours was flipping his knife. Just.like.Tate.

My mother-in-law leaned over with a smile. That looks familiar, doesn’t it? Yes, yes it does. 

I applaud the mother in that booth. She ventured out to a restaurant by herself with her two kids. It was clear that she was overwhelmed. I know that look. It is a big deal to do that by one’s self. I get it

The little boy was fidgeting and moving all over his seat. He was annoying his older sister. She started to whine. Knowing that her son needed a movement break, and knowing that she needed a few moments collect herself, she asked her daughter to walk the little boy over to the arcade games and entrance, where there was a tv in the floor. As her kids were preoccupied, she pulled out her phone and was clearly trying to catch up on email or Facebook or the Interwebz. She caught me looking at her. She got no judgement. She got no stink eyes. She got a smile and a nod. I get it.

My boys came back and we got our food. It was a blur of action for the next 10 minutes. And then…we were done. Cole was sitting under the table. Jake was playing with his french fries and asking if he could get new Beyblades (his go-to conversation when he’s bored and unsure of what to say). Tate was playing with Hubz’s phone and was starting to stim vocally. 

We got the waitress’s attention and started to clear out. As we were finishing up, I was able to sneak a peak at our booth neighbors. Their food had arrived. The little girl was using her mom’s pen and was trying to do some of the puzzles on the kids’ menu as she ate her hamburger. The mom was pouring the lemonade from the Red Robin cup into his sippy cup. As she tightened the lid, her son flipped his corn dog the same way as he had been flipping the knife. He was playing a game on his mom’s phone. As she got a moment of peace as she nibbled a fry. She looked relieved to have that one moment. That split second of quiet in an otherwise chaotic day. I smiled in her direction because, well, I get it.

Dear Fellow Parishoner…

Dear Fellow Parishoner,

Yesterday, when you arrived during the morning announcements at Mass, and chose our pew, I’m sure you expected the four of us to scoot inwards so you could sit on the aisle. Your very visible frustration with us when we moved our legs so you could move to the middle of the pew was not lost on us. Nor was your sigh. Nor was your irritated tone when you said, “Can you at least lift up the kneeler?”. We asked you to move to the center of the pew because we knew that when (not if) Tate needed to take a break from Mass, we would have to interrupt you again. And again. And again.

I saw your sideways glances at us as Mass began. Hubz, Jake and I stood to sing the entrance hymn. Tate sat “criss cross” on the pew, flipping his stick in front of his eyes, and commenting just slightly too loudly about the song. Tate tried to sit still in Mass. He tried all of his coping mechanisms. Only a few scripts slipped out as he tried to reconcile the weird lights, the hum of the electricity for the music equipment and sound system, and the cries of babies and toddlers who were none too pleased to be stuck in the pews as well. We encouraged him to stay with us for “just a few more minutes”.

Just as the visiting seminarian was approaching the ambo to give his homily/back story about his journey to the priesthood, Tate let out a vocal stim. Hubz scrambled with our son out to the nursery, where he could listen to the homily while Tate played with various toys and got out some of his anxiety. Fellow Parishoner, I saw you scoot slightly towards us, giving yourself more room.

Did you notice that Hubz and Tate came back as the homily ended? Did you see that Tate was more regulated and able to follow the routine of the Mass? We followed the crowd, praying, kneeling, standing…until, well, we couldn’t anymore. Tate needed another break. “Let’s get out of here, Mom.” I took him to the bathroom. He played in the sink in there for a minute. He needed a drink of water from the fountain, too. I had to step in when he started to perseverate and play with the button for the water. But, Fellow Parishoner, I’m sure you didn’t see that. No…you didn’t see that.

Tate wanted to come back in. We came and knelt down next to Hubz and Jake. Jake was handling Mass much better than usual, Fellow Parishoner. He was. He kept his hands to himself.  He kind-of paid attention to what was being said. He followed along with the prayers. He didn’t keep asking if he was a good boy. But you probably just figured he was a typical kid, and his little brother was not. I saw the way you snapped at your daughter to pay attention…and then ever so casually looked our way. You may have been looking at the people to my left…or maybe at the statues of the saints. Who knows? But the overly-sensitive, battle-scarred autism mom that I am, well, I figured you were probably giving me the “see-I-know-how-to-keep-my-kid-in-line” look. I get it a lot, you know, that look. I do know how to help my kid…and that’s what we were doing with all of those breaks.

Did you notice, Fellow Parishoner, that Hubz took Tate out of Mass again as Communion started? He needed another break. He was starting to get louder, announcing to anyone who would listen that there was a spider web in the wayyyy-upper left corner of the church. See, our autistic little man, while looking for a focal point to try to not get overwhelmed, well, he noticed something that most of us don’t. He’s good like that…noticing little details and such. And yes, he was going to keep talking about it…so Hubz took him for another break.

As we sat down after Communion, to listen to Father one last time before he gave his final dismissal, you glanced at us again. Hubz and Tate were back in our pew. Tate wanted to be there. This time, you looked a little perplexed. A little confused. Maybe you were stifling a sneeze…or maybe you were trying to figure out what Tate’s “deal” was. (Don’t worry, we get that a lot…we’re used to it…) Did you listen as Father started to talk about the Knights of Columbus sitting at the front of the church? Did you hear his praise for them and their hard work and donations which helped fund and build a new classroom for our church’s SPRED program? Father explained that SPRED is the Special Religious Ed for children with developmental delays and cognitive delays. He explained how our parish’s program is becoming a model for other parishes in our diocese. Father explained how amazing it is that there are volunteers willing to give their time so that the “special” children can learn about their faith in a one-to-one setting. Where they can go at their own pace and participate in all of the sacraments.

Fellow Parishoner, did you notice the tears glistening in my eyes? Did you notice Hubz squeezing Tate and telling him that the classroom was for him? Did you? See, Fellow Parishoner, our son, our beautiful Tate, is 1 in 88. He has Autism. He has SPD. He has a few other issues that impact his daily life. But, he was here, just like you, celebrating the Mass with other Catholics. It wasn’t as easy for him as some others, but he did it. He made it through a Mass without a meltdown. Without too much anxiety. And with a few breaks with mom and dad as needed.

So, Fellow Parishoner, please remember, next time you are asked to move to the center of the pew when you are late, there may be a good reason for it. Swallow that frustration, and let it go. We’re all together under God’s roof for the same purpose…to celebrate and pray, regardless of where we end up sitting in a pew.

 

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