A family's story

Posts tagged ‘Awareness’

That Stings

Overall our winter break has gone relatively smoothly. Tate is starting to fall apart, but we are all trying to help him make it through. Jake is doing a magnificent job of using his coping mechanisms to retain his composure and focus.  I am growing weary from the bickering and complaints of boredom, but overall, this break hasn’t been one of our worst, and for that, I am grateful. We have four days left before the boys head back to school, and I am confident that we will make it to that date without any major drama.

I had figured I’d wait to blog again until the boys were back in school. After all, Cole is refusing to nap while his brothers are home, and I don’t have my couple of hours to myself right now. I get ideas in my mind, but have no time to write anything concrete. I was content with my little blogging break, too. It was a nice little vacation. Then we got together with some friends last night, and a few statements were made, and I’m left feeling hurt. And how do I process hurt? I write…

We were sitting around our neighbor’s family room watching the Rose Bowl. None of us were totally vested in the game, but it was fun to watch and hang out..and to get out of the house for a bit. The kids were playing in the basement, and we adults had some time to talk, which was much needed. Between the 6 of us adults, there are 8 children. As parents are wont to do, we discussed the kids, and various situations, experiences, and the like.

Most of the conversation was light–fluffy. We talked about how cute the kids were when we have been the “guest” reader. We laughed about reactions to gifts at Christmas. We talked about our children’s personalities. We marveled at how different the children from the same parents can be.

At one point, my neighbor’s 2 and a half year old woke up from his nap and hung out around the adults while he woke up. We had just been over there on Saturday, but I swore that their son had grown again. We all remarked that his speech had exploded, too. My neighbor acknowledged it, as well. She said she had started looking into getting a speech/language evaluation..and then he started to talk. She said she was beyond relieved.

Then she said the words that stung.  “Yeah, I totally didn’t want that kid who is in therapy, ya know?” As she said it, she rolled her eyes for effect. I stared blankly ahead. I should have come back with something..anything…but I didn’t. I couldn’t believe it. She’s been very supportive and asks questions about our boys and their therapies. She seemed to be understanding when I asked to change carpool for a therapy appointment. She had remarked about our boys’ progress, too. I always thought she “got it”. But I guess not. The disdain with which she made her proclamation was clear. Hubz prickled at the statement as well. It was very clear that having a child with a disability is seen as a bother…an inconvenience. Ow. Just. Ow.

I am terrible with confrontation…and I am not always quick on my feet with witty comebacks. I left the room to check on my kids in the basement. They were all doing fairly well. Glad that they were holding their own, I went back upstairs and took a deep breath before joining the group again.

Later on, our friends were discussing how their daughters, both third graders, had a sleepover a day or so after Christmas. They were laughing about how “cute” it was that the girls were on their i-Pod touches talking to other friends and each other while they sat next to each other on the couch. They weren’t talking to each other, but were wrapped up in their devices, huddled on the couch together. I had to laugh at the irony. Hubz and I spend thousands of dollars on therapy and social groups for our boys each year to get them to communicate with peers face-to-face…and here are two neuro-typical girls whose parents think it’s “cute” that their daughters aren’t communicating directly with each other.

Sometimes I wish I was able to find technological isolation “cute”. But I can’t. In our world, when our boys get absorbed with technological devices and isolate themselves from others in the room, we have to encourage them to put the devices away and interact. We have to model social behavior for them. We have to use social stories to help our boys understand the importance of communicating with others.

I am probably being overly sensitive. I know that the comments were not made to make me feel like a bad parent..and weren’t directed at making a point about my children. However, it became very, very clear to me that people who don’t live in our world don’t understand that therapy isn’t an inconvenience. It is a necessity. And it is a lifeline. And it works.

I also realized that among my friends, whom I thought had a fairly decent awareness of the importance of therapy for children with delays, there still is a stigma associated with delays and disability. So, as I sit and lick my wounds…I have decided that my biggest resolution for 2013 is going to be to spread awareness and to get people to understand that a child with a delay or disability is not even close to a bother or inconvenience.  A disability makes my children different, yes…and that’s ok.

Halloween Hoe-down

Saturday afternoon we attended a Halloween party at my sister’s friend’s farm. They had plenty of activities planned, and the majority of the party sounded like it was going to be outside. Outside and not crowded. We were game!! In fact, I talked the party up so well to Tate and Cole that Jake decided that he didn’t want to go on his Haunted Hike for Cub Scouts. Hubz and Jake joined us for our Halloween Hoe-down!

We scrambled to assemble our costumes Friday night and Saturday morning. My Katniss costume came together fairly well. I had everything except a bow and arrow. Hubz decided to wear my big, fuzzy pink bathrobe with the Werewolf mask from Jake’s original costume. We had a shower cap and he became the Big Bad Wolf as Grandma. Except that his mask totally, absolutely, without-a-doubt freaked out all 3 of our children. So he pulled it up on his head…and instead looked eerily like my grandmother. Jake was Hawkeye from The Avengers. He is bummed that come Wednesday he has to leave his bow and arrow at home…but the “no weapon” rule definitely applies to his accessories. Cole was a shark. YESSSSS!!! He tried on the Spiderman costume, but it was a little big, and the built-in muscles drove him nuts. I am sooo glad that it worked out this way..and I didn’t have to do ANYTHING.

What about Tate?! Well, I’ll have you know that Tate chose a costume idea..and I made it..and he wore it. Oh yes he did. For realz! When asked by 3 different therapists last week, Tate proclaimed that he was going to be a spider. The irony, here, is outstanding. See, Tate has a love-hate relationship with arachnids. He is fascinated and repulsed by these 8 legged critters. However, that is what he said he wanted to be. I found some black fuzzy socks at Target, stuffed them with crafter’s stuffing, pinned them onto the black side of his jacket, and voila! We had a spider. He even wore his Spiderman shirt. I think we found the perfect costume for him…because he can “dress up” without really having to dress up. Oh, and watching his 4 extra pinned-on appendages?! Hil-arious!

We arrived at the party around 4:15. It truly was in.the.middle.of.nowhere. Jake didn’t believe Auntie K when she said that it was a really small town…with one stoplight. Being the suburban boys they are, our boys marveled at the real, live livestock. Mommy, they have sheep! And goats! And chickens!!! Cole was mesmerized by the tractors. That’s right…there were TWO of them. Oh, it was Hope boy heaven!!

The boys made themselves at home…took off their shoes, and bee-lined to the playroom. They were having fun, and were being appropriate, so I socialized a bit with the other party-goers that I knew. I was shocked that they didn’t know who I was dressed as for Halloween. Of course, neither of them had read nor seen The Hunger Games. Sheesh! After some small talk, we rounded up the kiddoes to go outside for a tractor ride.

It was fairly chilly. Tate’s nose began to run immediately upon entering the chilly air. It didn’t stop him, though. He played on the swingset for a bit. From there, the boys ran to join the other children at a kid-size hay maze. Tate was apprehensive about going in, but after some reassurance from Mom, Dad, and Auntie K, he ran in. I was a bit nervous..would he freak out at a dead end? Would the hay be too itchy? Would it be too dank and smelly? I waited. He popped his head up at one point, and I headed in. Hubz and my sister, K, laughed at me, as I had to crawl on my hands and knees…and not 2 moments after I entered, Tate came bounding out of there, all smiles and giggles. Joke was on me!!

After that, we climbed aboard the hay ride. My boys loved watching the tractor. Jake was the safety expert, making sure nothing came apart. (I know he was anxious about it…but he played it fairly cool. We got to go down the field to the little hill that had been scattered with pumpkins. Each of the children got to choose a pumpkin. Jake found his first…he climbed to the top of the hill to get it. Cole chose a small pumpkin near the base of the hill. Tate was a hoot to watch. He haphazardly climbed the hill, found a pumpkin, looked it over, deemed it unworthy and threw it to the side. He climbed up a bit higher and found his prized pumpkin. He handed it to Hubz for safekeeping. We boarded the ride once more, my boys choosing to sit to watch the tractor in action. From the field, we drove to the neighboring house to trick-or-treat at grandma’s. (It was really the farm owner’s grandma!) The kids got treat bags…and they were the first (yes, Tate, too) to shout, “Happy Halloween, Grandma!!!” It was awesome.

After the hay ride we went back inside the house. The house was an old-fashioned farm house. It was small-ish, but the ceilings were so high that it felt bigger than it really was. They did a chili pot luck for dinner. There were also hot dogs. Jake had made up his stubborn little mind that he was not eating dinner there. So he didn’t. Tate was not hungry, so I didn’t push it. Cole sat and socialized with the other kids, chowing down on a hot dog and chips. Then he followed his brothers into the playroom. Hubz and I ate some dinner with Auntie K, periodically checking in on the boys, who were all playing very well.

More than once there was some high-pitched whining. I would perk up, run to check, only to realize that it wasn’t Tate. It was another little boy. Each. Time. He was younger than Tate, but reminded me of him in many, many ways. First, he had ringlet curls all around his head. Oh, how I miss Tater’s curls…but he hates them, so we keep them cropped. Plus,  now they are more waves than ringlets. Second, the inappropriate playing. He didn’t play with anything as it should be…except for a slice of pretend pizza, which he latched onto and would not give up.  Third, the whining…he was dysregulated. I knew it. Hubz knew it. Auntie K knew it. The parents…well, they seemed to be in a state of denial, which we all were at one time.  The little boy didn’t talk much, and he preferred adult company to that of other children. He especially enjoyed coming over to me and my sister.

I was torn. I didn’t know whether to say anything or not. I mean, how does one tell people they don’t know that, “Oh, your son reminds me so much of my son. Especially his behaviors. He gets dysregulated, too. He also prefers adults. He also struggles socially.” The parents just kept insisting that their son was shy…and maybe that was it…but, well, yeah. I never quite know whether I should throw out the big “A” or not in these circumstances. I mean, maybe it was just an off night…except that it seemed like it wasn’t. It seemed like this was fairly common. Especially so because his older brother said, “Ugh…he’s doing it again.” I have heard that phrase before…

Anyway, we were all getting tired, so we decided to pack it up. The boys helped pick up the toys in the play room. Then we thanked the hosts and headed home. No tears. No tantrums. No stress. It was a good night–especially when each of the boys exclaimed that they loved the Pumpkins! Tractor! Hay ride! Candy!

Nights like Saturday remind me of where we were only a few short years ago…and how far we’ve come. Nights like Saturday give me hope that it will continue to get easier…and that we’ll continue to be able to participate in activities like typical families do. As long as we go at our own pace and do it in our way, we will get there!!

Almost Wordless Wednesday

Here are some pictures of our month thus far….

Ja-ake, come get me here.- Tate at the Pump-It-Up Autism Speaks event on April 1st. (And they said he couldn’t engage others!) He also promptly scrambled up the “wall” after Cole as Jake chased them both.

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Here, we lit it up blue (and still are) on April 2nd.

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Cole totally booby-trapped the stairs with his lego “trash”.

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Jake and Tate using their electronics on Good Friday. (Before their evil mother took them away for a bit so they’d actually, you know, interact and play together.)

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A certain 2.5 y.o. absconded with a chocolate bunny…thief!

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I found this “gem” while out and about on Saturday. They really will try to sell just about anything, won’t they?! It’s a toilet that you “clean” with a sucker plunger. *gag*

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Tate riding his scooter while waiting for the bus.

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It’s Evil Cole-nevil! (I dread the tween and teen years….)

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An art project that Tate brought home from school. It’s just so gratuitously cute for me NOT to share it!

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Why Does He Do That?

I know that Tate, who appears outwardly typical in appearance, just, well, isn’t. His brain works in mysterious ways.

When our Tater Tot is excited, he flaps and volume control goes out the window. When he’s anxious, he paces, he flaps, he pulls his underwear waistband, he emits some odd sounds…a mix between a hum and a pained cry. So, yeah, not “typical”.

We walk the fine line that so many who live with Autism do…the one between encouraging more socially acceptable behaviors and allowing your child/brother/nephew/grandson just be himself.

Our family knows that this is Tate. It’s who he is, and how he reacts. We all, 2.5 y.o. Cole included, know how to talk Tate down from his anxiety. We all know which stims work best when…and we are starting to decode his scripts…even Jake, who has language issues himself, knows that Tate’s scripts mean something.

I have been preparing myself for the inevitable. The questions from kids in the neighborhood, at church, at the store, at the park….why does he do THAT? However, last night, as my boys frolicked in the Summer-ness outside, I felt blindsided.

We were outside with two neighbor families. The one family has a daughter Jake’s age, and 2 sons, each a year behind my two younger boys. The other family has a 3 y.o. daughter and infant son. The kids had been chasing each other through the yards and the cul-de-sac out front. They were all having so much fun. And Tate? He was keeping up, having fun and, loving being in the thick of things.

Somehow we ended up in our neighbor’s back yard. They have a small playset (since it’s only their 3 y.o. who plays out there currently), which has one toddler swing and a regular swing. The older neighbor girl, the one Jake’s age, began to swing on it. Cole was in the toddler swing.

Tate ran toward us. He made a beeline for the regular swing. He started to flap. I could see the anxiety catch up with him. Between the 7 kids roaming around, and Tate’s desire to swing on the unavailable swing, his inability to cope became obvious. He lost his words, and the emotions took over. He flapped. He paced. He made that noise.

Me: It’s ok, Tater. You can have a turn soon. She’ll let you swing when she’s done.
Tate: hruuuahhhuuuh. I’m fine. Huuurrmm. Huuurrmm. (Flap, flap, flap)
Me: Settle down, sweetie. It’s ok. (I reached out and gave a deep pressure hug.)
Tate: I’m fine (his script) (Flap, flap, flap)
A: Mrs. Hope, why does he do that?
Me: The flapping?
A: Yes. Why?
Me: (hoping the panic didn’t show on my face) Well, A, Tate reacts to anxiety differently than we do. Like, when we get excited, or really, really want something, but aren’t sure we’ll get it and we just wring our hands or think things quietly in our heads, well, Tate shows that feeling with his hands and feet. We might feel that way, but we do it inside, where Tate puts it out there.
A: Ohhhhh…
Me: It’s not bad or anything…just a different way of handling his emotions.
A: Yeah, I guess. (Gets off the swing.) Hey, bud, you can use this now.
Me: Thanks, A.
A: Sure. He really wants it more than I do….

Aaaannndddd, exhale. I am very lucky that one of my first explanations was to a girl who is (1) very mature for her age, and (2) fairly understanding of younger kids. I am sure she had more questions for her mom later, but she was content with my explanation for the time being…

Now to refine my explanation for future questions, looks, and judgements…

By the way, while we discuss Autism in our house, we really haven’t said much to other kids. Tate has never asked, and if I tell him, I don’t know how much sinks in. Jake asked once, but then he was like, oh, that’s Tater.

Our friends know, but never ask if we want to talk to their kids about it…and I never know if I should bust into a lesson about neuro-diversity.

Sometimes this parenting gig is hard!

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