A family's story

Posts tagged ‘Acceptance’

Stimerific

Summer, for our boys, is winding down. We have three weeks left of our “carefree” days and relaxed schedule. Well, considering our family, we have about week left of that. It takes about two weeks to re-establish school year routines and such.

I have noticed that as our summer has gone on, and as ESY has ended and therapists are off for their vacations, Tate has become more and more stimerific. He’s flapping a lot more. He’s doing his little dance more. He’s pacing in front of the TV as old favorites like Max and Ruby or Octonauts play. He’s squeaking and watching fan videos, and has even returned to watching his beloved Wow!Wow!Wubbzy videos on Youtube. I am not complaining, because, well, as he stims, he is keeping himself calm. He is not melting down. He is not regressing (too much) in terms of other areas like speech or motor skills. He’s trying to find his happy place.

Today Tate spent about a half an hour outside playing with the hose. Watching him with water is mesmerizing. He has a definite pattern of how he plays. He starts in the corner by our chimnea. He flushes it out and watches as water streams through the grates. Then he sprays down my plants. (Sadly, my jalepeno plant was a casualty, but we’ll live.) After those are sufficiently moistened, he walks over to the edge of the patio by the family room sliding doors. He has a piece of firewood that he pulled out of our pile. It has a hole. He has eroded a bigger hole as he forces water into it at full blast. Once that is accomplished, he waltzes over to the center of the patio, and acts like a sprinkler. He twists and turns and sprays down almost everything in his path. Today he was whipping the hose like he was Indiana Jones. I was amused. He was incredibly happy. Squealing and scripting to his heart’s content.

As I type, he and Cole have pulled the cushions off of the couch in the tv room. Cole is trying to play hot lava with him. Tate would rather jump on my poor cushions and flap as he does so. The movement is soothing. It keeps him grounded. Cole is a bit frustrated…but he’s handling it quite well.

My stimerific kiddo is finding his way right now. He’s really trying to hang in there until our schedule gets back to a more predictable pace. I hope that we can keep the stims going until then. Only 25 more days. (Now I must go make sure no one breaks his neck while avoiding the hot lava…or doing a jumpy stim….)

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A Whole New World

Last night Tate had his second SPRED class. SPRED is Special Religious Education. Our parish, gratefully, offers this program for children with special needs so that they may receive instruction in our faith.

He has a one-on-one catechist. A catechist is someone who teaches the faith of the Catholic Church by both word and example. In the SPRED program, this is done through one-on-one interaction, but not in a vacuum. There are about 8 children in Tate’s group. They also learn the whole concept of community which is a big part of our worship.

Tate didn’t want to go last night, at first. I reminded him that he enjoyed it the first time he went. I talked about Ms. S, his catechist. I mentioned how he loved the paint. He perked up after that. He willingly put on his shoes, hat, and coat. 

As we walked up to the ministry center, Tate got anxious. He flapped a little bit. He started a vocal stim. I spoke in a soothing tone, and squeezed his hand as we walked. He likes that…the hand squeezing. Occasionally, he’ll squeeze back. I love that.

In addition to the SPRED group meeting on Thursday nights, our ministry center hosts a food pantry that night. Usually the crowds are lining up outside when we arrive. Due to the bitter cold yesterday, the people were allowed to wait inside. Tate was thrown off by the number of people in the building. I know that a few of them were thrown off by my flappy, stimmy boy.

We walked upstairs to the SPRED room. See, last year, as part of a parish improvement project, some Boy Scouts built a special space for this SPRED group. Our fellow parishoners donated money for the cause. It is beyond amazing what can be done when people put their minds to it. 

We were a bit early. Tate started to flap again. He walked in a circle. I asked if he wanted a drink of water, thinking it might help calm him down. Luckily, it did. He got himself a nice drink…and then watched as he pressed the button and the fountain went quite high in the air. Luckily it did not make a mess. I gave him the “mom” look. He smiled and backed away. 

We walked back to the meeting space. There were 2 other boys waiting there. Oh. Yeah. All 8 children in the 6-11 year old program?? They are boys. Tate asked to play fans on my phone. I know watching fans helps him keep anxiety at bay. I allowed him to do it. 

Before we knew it, the catechists opened the door to the meeting room. The lead catechist welcomed the three boys who had arrived. Tate muttered, “Bye, mommy”, and disappeared into the room. I thanked the head catechist and went home.

An hour and 45 minutes later I waited in my car for the side door of the ministry center to pop open. As it did, I walked up and got Tate, who was smiling his megawatt smile. The one that tells me, more than any words could, how his time had gone. I felt my muscles relax…I knew my son was content…and happy.

We got settled into the van, and I blasted the heat. As we drove home, Tate scripted happily in the back seat. I interrupted his script.

Tate?

Yeah?

Did you have a good time?

Mmm-hmm.

Are you happy?

Yes. Yes. You said you’d come get me and you did. Happy!

What did you do tonight?

I painted myself. I clapped myself. I sang songs. I had some dinner.

What did you have for dinner? (They always “break bread” at the SPRED meeting.)

I had some goldfish and a lemonade juice box. Mmm-hmm.

Was that good?

Oh. Yes.

And with that, we were pulling into the garage. Tate happily scripted into the house, and greeted Hubz with a big smile. I asked Tate if he wanted me to put him to bed. 

No, Daddy. 

Hubz happily took Tate upstairs. I went with them and put on my comfy clothes. I popped into the boys’ room and wished Jake a good night. As I hugged and kissed him, Tate leaned his head over the top bunk. 

Mommy?! Give me kiss!

Of course–muh-wah!

So, this SPRED experience is a Whole New World…and one that I think I like. A lot. Tate knows these are “his” people. He feels cared for, he feels confident, he feels accepted. I couldn’t ask for anything more.

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.

 

Autism Awareness

Here it is…April. Autism Awareness Month. Today is World Autism Awareness Day. This is our first “official” year promoting awareness. Last year we knew that Tate had Autism…we just couldn’t bring ourselves to do anything public to help others.

I find it…ironic, no, coincidental that our son, whose due date was May 9th, was born in April. He started Early Intervention in April. He entered Early Childhood preschool in April. His diagnosis came…in April. Interesting, no?! I feel as if a higher power was trying to tell us something about a month which we should be aware.

That being said, the thing about awareness “months”, to me, is that it is 30-ish days of a special color, ribbon, PSA on tv, social media, etc…and then the topic fades away a bit…especially if I don’t have a personal connection.

With last week’s announcement of the 2008 numbers for Autism prevalence, well, I think more and more people DO have a personal connection to Autism. So, I hope, Autism Awareness continues as the months go by…and awareness turns into acceptance and understanding.

I can see acceptance in people close to our family. People, who, a year ago today had no idea that Autism was a part of their lives..who were mystified by it…a little scared, even, of what it meant. Now, they are doing their part in promoting awareness by supporting Tate and our family.

I see acceptance when my sister joins our Walk for Autism Speaks team. Or when she puts a blue light on her porch. Or when she wants to give me her professional psychologist opinion, but just listens and assures me that I am a good mom–even when I feel like a complete mess and failure.

I see acceptance when my dad pulls a stool out for Tate so he can play with the kitchen sink at his house. My dad, who isn’t always aware, understands that the social setting of a family gathering is overwhelming, and that running water..the sound, the feel, the stream of it, it calms Tate, it helps him relax. Or when he

I see acceptance when my BIL engages Tate in a game. Or when he gives him a big high-five after hearing that Tate put his clothes on–by himself. Or when he signs up to walk with us at the Autism Speaks Walk.

I see acceptance when my MIL & FIL are excited about purchasing play doh for our son. Or when my MIL hurries through the dishes after a family dinner so that Tate can use her sink. Or when they let him turn on every fan in the house–on a crisp 50-degree day–because they know the motion, the consistent hum, help regulate him amidst the chaos that comes when cousins and aunts and uncles and grandparents are together.

I see acceptance when our neighbor tells me that she’ll watch the boys for a bit…just so I can have a few minutes of quiet and “me” time. Or when she asks how therapy is going. Or when she says, “next weekend, then” when we have to decline an invite to hang out at night because it’s just too much.

I see acceptance when my SIL shows our niece the piece of blue in my hair and says, “isn’t that awesome-it’s for Autism Awareness?!” Or when she says that she and the kids have talked about Autism at home…and how they include..or try to include..Tate when they play.

I see acceptance when my oldest son helps his younger brother empty the vacuum canister so Tate can vacuum–again. Or when he lets his brother play Wonder Pets on his DS. Or when he helped an older child with Autism down the slide at the jumpy place..because he could see that the boy was overwhelmed by the maze.

I see acceptance when my friends “like” or comment on my Facebook photos of my “1 in 88”. Or applaud the shock of blue in my hair. Or dress their kids in blue today. Or dress themselves in blue. Or post something on Facebook. Or light up their houses blue.

I see understanding when the fellow church-goers hear Tate singing a song from school–during the homily–and smile, and say nothing. Or when they agree with Tate that “church pants” are not comfy. Or when they see him flipping his stim stick and say, “whatever it takes”. Or when the priest blesses him and doesn’t skip a beat when Tate says, “shoo”…and still smiles upon him.

Acceptance and understanding are out there…we have to promote THAT. As I see more acceptance and understanding, it gives me hope that Tate’s world will be a little friendlier. A little easier. A little better.

Acceptance of those who are different–for whatever reason–can be difficult. However, if we model that behavior ourselves…and show our children the examples…just IMAGINE what we can do to help everyone who is affected by Autism Spectrum Disorder. Imagine…

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