A family's story

Posts tagged ‘Sensory processing disorder’

A glimpse into my kids’ lives

Tomorrow Hubz and I have a holiday party. A couple with whom we’ve been friends for years has an annual holiday party for grown-ups only…and it is a great night out. Except that the few days leading up to said event gives me the worst social anxiety. Like, I already have butterflies in my stomach, and I can hear my heartbeat in my ears when I think too much about going to said party. I know that once I am there I will get more comfortable, and that we’ll enjoy catching up with our friends…but it’s the waiting…where all of the what-ifs and insecurities play out in my head…that is almost painful, sometimes.

I am, to my knowledge, neuro-typical. I know that I am experiencing anxiety, and that the anxiety is actually worse than the act of attending the party. To keep the anxiety at bay, I focus on how I feel when I’m at the party…how it is enjoyable to see old friends, how it is always interesting to hear about what is going on with others’ lives. I can separate the two…the anxiety and the party. I talk myself down from the ledge. I focus on the positives. I try not to dwell on the pit in my stomach. I practice my party scripts in my head. (We all have scripts, you know.) 

This year, said party has an “Ugly Sweater” theme. I have to go to Goodwill and Walmart today to see if I can find some hideousness for the party. I get another pit in my stomach. I know Goodwill will likely be cheaper..and who wants to spend a lot of money on something that is a gimmick. But my sensory disorder starts to give me some anxiety… what if the sweater is itchy? What if it makes me too hot? What if it smells funny? What if I can’t find anything and have to go to the party in the current trendy non-tacky sweaters I have, but I win anyway…what if I’m tacky?! (See, the anxiety creeps back in…)

Again, I know that I’ll be able to make a rough attempt at humor over my attire…and that my friends will laugh. And no one will care. We’ll talk about work, about our kids, about the chaos that is the holiday season. We’ll eat, we’ll drink, and we’ll laugh. There’s always loads of laughter at this party…and that is good for the soul. And with that, I start to look forward to the party again.

As I grapple with  my social anxiety, and my sensory disorder, and the anxiety that the sensory disorder brings, too (such as the loudness of the party, the temperature…too hot..too cold, the amount of people crammed into one space (and the fact that I’m at armpit level), the smells, the perfume and cologne that people insist upon wearing but is a huge assault to my sense of smell), I am smacked upside the head by the realization that my boys, in particular, Tate, deal with this stuff every.single.day. And he isn’t always able to rationalize his anxiety away…he hasn’t totally pinpointed the causes for his anxiety…yet. He gets bombarded every day…no wonder the kid is on high-alert and has a melt-down. I know that when I get into the car after the party, I need that hour drive home to just totally decompress.

I can’t imagine having this feeling all of the time. It would be debilitating. It would be overwhelming…and again, I am reminded of how amazing my kids are, too. They struggle with these disorders daily. They have to work through the anxiety, the social awkwardness, the sensory disorders, just to make it through a day. Not a once-a-year party…but every day of the year. I have such respect for my kids…because they do handle it. Not always perfectly, but they are able to function. They get out of bed. They go through a routine. They use the scripts they have been provided…and they make it through.

Pretty impressive for a couple of kids who are developmentally behind peers, don’t you think? I say it so often, but Tate and Jake…they are my heroes. They teach me how to be a better person. How to be a better mom. Being their parent has given me such a deep perspective that I never used to have…and I am grateful.

 

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Quirkiness is…

Here at the House of Hope, quirks are the rule, not the exception. All 5 of us are fairly quirky in our own right. I know I have written about us being “quirky” before, but I never went into specifics. Here is a glimpse into the quirky side of our lives.

Jake

Jake does a few things that make Hubz and me smile…but some may say  he’s a quirky little bugger..and we’re okay with that!

  • He does laps in our house when he’s feeling sluggish or needs stimulation. This has been going on since he was a preschooler. We have a great floor plan for this exercise, as it is open and has a circular path.
  • Jake does “butt bombs” on the edge of the couch when he is really excited while watching a movie or tv show. If I did those, I’d have abs of steel. Instead, he does them to get some input while he is otherwise under-stimulated. Plus, I think it has something to do with pent-up energy that he has no other way of expending.
  • If frustrated or irritated, he self-talks. “It’s ok, Jake, take a couple of deep breaths.” I know that this is a good one and he’ll eventually say it in his head, but right now, I kind of enjoy hearing his coping mechanisms from his own lips…
  • Jake makes up songs to sing to his brothers about activities that are going on in their day. He does it to help calm Tate or to quiet Cole down after getting riled up.
  • He is a chewer. He chews on pencils, shirt sleeves, and straws. It could be worse.

Tate

He does the quirkiest things…but he does them with such a zest, that you can’t help but be taken into his world!

  • When he comes downstairs for the first time in the morning, or does something he’s proud of, Tate will exclaim, “Look at me here!!” He throws his arms out into a champion pose, and it’s just the cutest thing ever.
  • Tate makes up words. He then uses said words in every day conversation. Hence, why everyone in our house knows the difference between something being “squicky” and something being “bonky”. Let’s not forget that we also have “squish” on our bagels.
  • He often will lay on the ground and change his orientation so that he is perpendicular to us. He then declares that he is “upside down”.
  • His favorite “toys” are spatulas, a plastic frosting spreader, and water bottles.
  • He can watch a fan spin ad nauseum. Seriously.
  • He is always humming a tune, and seems to have music in his soul.
  • There’s often a smile on his face, as if there is some joke that only he is privy to knowing…and it’s so endearing…
  • Tate has his spot at the table, in the van, and on the couch. Hell hath no fury like Tate when someone is in “his” spot! Even the neighbors and their kids know where he sits.

Cole

While still young, a few quirks are there…

  • Kid can climb. Everything. Shelves, ladders, poles, parents…you name it, he climbs it.
  • He communicates verbally, but just in case we don’t understand, he’s big into using over-done gestures for emphasis. Lots of hand movements, twisting, shaking of his head, etc.
  • He sings his own song to me when he’s getting sleepy or needs a snuggle.
  • He plays with my or Hubz’s ears when he’s tired or scared.
  • He likes squeezing into small spaces. I know he likes the feeling of the input from being crunched up.

Hubz

A sampling of Hubz’s quirks are as follows:

  • He will fiddle with the automatic window switches in the car, even if the windows are closed, because he wants to make sure they are doubly secure.
  • His ears HAVE to be clean. I should buy stock in the makers of Q-Tips.
  • Will pull any type of fabric over his eyes if he wants to take a nap. He needs to block out the light.

I, admittedly, have gotten my quirk on, too. Some of the things I do that are kind of quirky include:

  • Sing random songs about my kids. I made the lyrics up, and sing them to my boys here and there…or sometimes to myself when one of them is on my mind. It’s just how my mind works.
  • Make up words because I like the way they sound. (Hmm, pretty sure Tate inherited this from me.)
  • Clip my toenails down to the very edge. I cannot stand my nails snagging on anything.
  • Have to wear tight-fitting socks. Floppy socks give me the willies.

So, there you have it…we are a quirky bunch. We may be odd, but we love each other…and put up with each other’s quirkiness on a daily, sometimes, hourly, basis.

A Concerted Effort

This past Saturday Tate was in our church’s Sunday School Christmas program. The kids have been learning the songs since September.

Hubz and I went into the concert with much trepidation. There are so many outside stimuli, and any one thing could throw Tate into a downward spiral. The lighting was harsh, there were about 45 kids between the age of 3 and 6 on stage, crying younger siblings peppered the audience, the whir of the fan in the gym, the smells from the treat table, the lack of his favorite aide, and the list went on.

We sat in the back row. We came at the last possible moment prior to the concert, so as not to ratchet up his anxiety as he waited in the classroom. We held our breaths as the kids took the stage.

As Tate awkwardly climbed onto the highest riser with his classmates, I watched him scan the crowd. He found us and waved. He rocked ever so slightly as the other kids settled into place. They put him on the end. Umm…is he going to fall? He doesn’t always pay attention. One of the aides stood behind Tate and helped keep him calm. The music director spoke. The group started caterwalling singing. Tate kept up! He sang some words. True, he rocked from side to side, but not in an out-of-control way. YES!!!

The director had the kids find their families and then wave. Tate looked at us, raised his hand, and he freakin’ waved. AT US! My kid…the one who doesn’t follow 2-part directions?!? He WAVED.(He also gave all 4 of us a shout out!! I won’t perseverate on the fact that he also shouted to diapers….really.)

Tate managed to sing with his classmates for the duration of the concert. Sometimes he sang loudly, other times he was just keeping the beat. However, he kept up. There was no crying, no whining, no attempt to bust off of the stage. He didn’t shout echolalic phrases over his peers. He didn’t act out. He was part of the group and was able to attend through the whole thing!!

This concert? Just one more example of how far our kid has come in 12 months. The hours of therapy, the medications, the team meetings with his specialists and teachers…they all made this possible. For the first time in a long time we experienced a family outing without all of the drama. It was a Christmas miracle…and we loved it.

The look of pride and accomplishment he had on his face was more than enough to keep my cup full for a while. And he knew how proud we were of him, too. It was awesomeness all around.

I love his successes. They give him confidence. They give us hope.

Calgon, Take me away!

We survived the long weekend. Barely. It was nice seeing Hubz’s family, but I am so, so, so relieved to be back home and easing into routine. 11 people and 2 dogs in one house is a lot…for anyone. But especially so for my Tater Tot.

Thanksgiving  itself went well. Much of the day was smooth, even if Tate stimmed a lot. He flitted between the kitchen sink, the fan controls in the family room, the Xoom, and whining. With 11 people to serve and feed, there was quite a bit of chaos and noise. His senses were on overdrive. (Truth be told, so were mine…)

Tate held it together fairly well until the end of Thanksgiving “dinner”. (I say it should have been called lunch because we ate at 1 pm.) We called it dinner, though, so he was hellbent on taking a shower when we were done. Cuz that’s what we do…take showers or baths after dinner. He tired of waiting and pulled off his shirt..at the table. Hubz and I figured that was better than losing his pants. My MIL seemed a little flustered, but shrugged it off. I feel like my SIL thought we were being too permissive. Oh well..we made it through.

Once the fam was done, Tate did get that shower. He was so happy. The rest of the day went fairly well.

Friday proved to be the breaking point. Everyone woke up in an ok mood. Tate stimmed at the sink again…especially when everyone was moving about with breakfast. We decided to head out…it was obvious we all needed a break. Luckily in the boondocks, no store really gets crowded…and that held true for the local Walmart. The kids were pretty good. They each got a small toy, which helped.

When we got back we had leftovers (my fave part of the holiday). Hubz, his dad, and BIL went out for a bit to test drive cars. It was a ploy to get my FIL out of the house so that we could set up a surprise party for his 65th birthday. Nothing fancy, but we could get the kids involved. This was a good plan…in theory.

Reality was not so fab. That afternoon was harsh. Cole wouldn’t nap, Tate was stimming a lot, and despite my best efforts, he would not be redirected to purposeful anything…and Jake and our nephew were getting squirrely. We had the TV off, too, as the kids were becoming couch potatoes. My SIL had the kids start to decorate. We blew up balloons and hung streamers. A few balloons were left loose. Worst.idea.ever.

Suffice it to say, Jake and his cousin were playing a game, batting around a balloon; they ran upstairs. The holiday feast table was still up so there wasn’t much room. Suddenly we heard a huge CRASH!! I bounded upstairs because Tate was up there stimming in the sink. (Yes, I thought he may be involved…) Nope. Jake and his cousin stood surrounded by glass…MIL’s fave lamp in shambles. My nephew blurted out, “It was an accident!” I sent Jake to the couch downstairs so I could help clean up. Tate was utterly confused.

Luckily MIL handled it quite well. Jake and his cousin each gave an apology. And we continued to wait for the men folk…

They called, and were on their way. The kids got more and more hyper as they waited for Papa and the uncles. Ridiculous is one way to describe it. Exasperating is another. The guys got home and they made us wait a bit while they went potty. ARGH!

The party went ok. Tate even was up for singing “Happy Birthday”…something he never would have done 8 months ago! Things were ok until dinner. That is when things really took a nose dive. Tate likes sitting smack dab in the middle of the couch. ANY couch. It’s “his” spot. We have talked about this so many times…a few times even that weekend.

Our nephew had sat down there while Tate was getting his pizza. Tate came back and asked him to move…in his way, which meant saying, “shoo, shoo, [cousin’s name], shoo”. He threw in a please and asked him to scoot over when it seemed like his cousin didn’t hear him. I don’t know why he wouldn’t move…but whatever. Then SIL raised her voice and told Tate, “Sit over there. We need to share.” She was clearly irritated with Tate. My hackles raised. Seriously?! I went upstairs to the bathroom to calm down.

Apparently when I was gone she said something to Tate when he pursued the couch again. Hubz told her to let it go, as it was going to start more problems. She dropped it, but wouldn’t talk to Hubz. Drama…

The next morning things were obviously strained…in addition to my hurt feelings, there were some strong comments made between other family members about non-related things after I had gone to bed. I could feel everyone just wanting to be done.

While I was sipping coffee and trying to wake up after Tate’s sleepless night, I heard SIL mention to  MIL that the running water from Tate’s stimming was driving her crazy…and she was loud enough in earshot for me to hear. I pulled Tate off the faucet and gave him the Xoom.

My in-laws were kind enough to have us all up there. They were generous and were fairly understanding of our shtuff. I am still flustered about my SIL.

My hope is that upon reflection, our family remembers a day in the life…about how a day with Autism can be a little bit of wonderful, a little bit of frustration, and a whole lot of you-never-quite-know-what-you’re-going-to-get…

System Overload

The holidays are upon us. This week we celebrate Thanksgiving…and for the next 5 weeks we have the seemingly never-ending barrage of Christmas festivities. Plus we threw in a vacation….to Disney World. (€re we gluttons for punishment?!)

Many people look forward to all of the excitement and revelry. For me, for our family?? It’s a mixed bag…we love the idea of spending time with others, throwing schedules to the wind, eating foods we typically don’t serve, and the excitement. But it takes a lot to make it through these weeks with our sanity intact.

Anyone with children knows that holiday celebrations are a bit taxing…Throw in a child with Autism…and sensory processing disorder, and you get a major system overload!  Spending time with others? Well, yes…but it becomes a strategy game. Analyzing Tate’s behavior, gauging when it’s time to “say when”. Keeping one step ahead of him..paying attention to his eyes glazing over, staring at ceiling fans…dealing with his insistence to play with the kitchen sink while his brothers and cousins play games in the next room. Redirection. Letting him stim with a pencil, spatula, or butter knife for 5 minutes so he can move forward with the rest of the day. And doing all of this while juggling Jake’s requests for approval and Cole’s antics…

Throwing schedules to the wind used to be glorious. And while I still try to enjoy the lack of appointments and activities to run to, abandoning our routines and schedules in favor of 3 days at grandma & papa’s house, with 11 people and 2 dogs, has me feeling a fraction of Tate’s anxiety. I am always anticipating the next meltdown…intervening and talking Tate through the loose plans for the end of the week. Writing lists of things to pack so we are ready for the down time…trying to come up with some at-home therapies to use when Tate is starting to come undone…

Oh, and the food. My mother-in-law is a great cook. She makes the most delicious turkey and sides. She uses real butter and cream and full-fat cheese. It’s heavenly…but for my picky eaters? *sigh* not so much. And guaranteed, we’ll have at least one incidence of gagging and puking. At.least.one.

Probably the most difficult thing to deal with is Tate’s excitement. He looks forward to seeing his grandparents. He loves his cousins…especially our nephew. He likes the flurry of activity…the busy-ness of it all. But, while he is excited, he still hasn’t mastered coping mechanisms for when things get too loud, too busy, too much. His anxiety ramps up, he starts to lose control, he melts down…and holiday tantrums have a whole life of their own.

This year he has made such progress. Between therapy, medication, and maturity, he has become a different kid. I hope beyond hope that these strides help carry us through the next 5 weeks…or this momma may need a complete system reboot starting on January 1st….

Potty Talk

Ah, potty talk. In a house that is full of testosterone, it is one topic that everyone just loves to talk about. Want to make any of my boys (yes, this includes Hubz) smile? Say the word, “poop”. Funny, right?

I think their sense of humor is rubbing off on me…or maybe it’s the sleep deprivation talking….whatever it is, I warn you that the following story has to do with poop…and I kind of find it amusing.

Today when we got home from school, Tate had to go relieve himself. After quite a dramatic production, and several exaggerated grunting sounds, my child beckoned, ” Heeelllppp me! I need help…I pooping.” (Yes, he meant he pooped, but hey, at least I knew to come running.)

We got him squared away…and it came time for my little guy’s favorite part…the grand finale….the BIG FLUSH. Flushing the potty is like crack for my sensory kid. He loves the sound. The motion. The swirling. The movement. The disappearance of bodily waste (and random other objects) down to an abyss that he can only dream about…or have nightmares about…it is something he perseverates about. He is quasi-OCD about flushing the toilets.

Now, where was I?? Oh yes, the BIG FLUSH. So he flushed the toilet, and much to his chagrin, some shtuff would not go down. He impulsively flushed again, and again…I started to panic as the water got closer and closer to the top of the toilet. I told him the potty needed a break.
“Like a time out?”, he asked.
“Exactly…a time out.”

The water receded from the edge, and Tate seemed ok with waiting a bit. I left and got busy helping Cole with something. Suddenly, I heard it..
WHOOSH
“Tate, leave it alone….it needs a rest!”, I shouted.
WHOOSH
“TATE!! Eeee-nough!!”
WHOOSH, WHOOSH
“It’s too squicky, Mommy.”
“Let it be…”
WHOOSH
“Tate?”
“No, Mommy. Too squicky.” (Hands flapping, side-stepping anxiety dance going on.)
I grabbed him, squeezed tightly, and tried to calm him down.
“One more time, Mommy?”
“Ok…once more.” (Feeling deflated.)
WHOOSH
“Yay! It is gone!! Poops are stiiiin-keeeeyyy. Pee-yew, gross.” (I totally laughed at this. I probably shouldn’t have, but it was just kind of funny…)

His mission accomplished, Tate bounced out of the bathroom, underwear bunched up outside of his waistband, edge of his shirt absent-mindedly tucked in, happy as a pig in….poop!

Show-ow-ow-ow-er

When I was a kid I remember watching sitcoms where they’d prank each other by flushing the toilet while someone was showering. Because I had sisters, we chose to fight with our mouths, not pranks, so I never dealt with this phenomenon…until now.

A two-bathroom upstairs home with a child with an obsession with water AND spinning is NOT a good combo for a relaxing shower. At. ALL.

I had to take a shower this morning. Had to. I told Hubz I was heading upstairs in a whisper. He-of-exceptional-auditory-abilities, aka, Tate, heard me. Of course, he had to come up, too. *sigh* We are on Code Red anxiety alert this morning, so I knew exactly what he was going to do…play with the toilet.

I spent 10 minutes darting in and out of the water stream. Hot, hot, hot…so I would turn it down…cold, cold, cold…and then back to a comfy temp…and then hot, hot, hot…ughhhh. Of course I had to shave my legs today…

I survived, but jeez, that shower was the furthest thing from relaxing. In fact, most showers at the House of Hope are a game of roulette.

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