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Category Archives: clothes shopping for autistic kids

Expectations

This morning I stood in the doorway and cautiously watched Bailey put on the new shirt she picked out of her closet. I listened to her speak, then repeat to herself everything in a whisper. This is something she does constantly, like “rinse and repeat” when you’re shampooing, only with words. I’ve come to expect it. I’ve also come to expect what happened next. She got one arm in a sleeve and a scowl appeared across her face.

“It’s uncomfortable,” she said.

“Just put the other arm in and let’s take a look.” I said, although I don’t know why. I knew how this would end. The sweater and I were going to lose this battle.

She put the other arm in and stood up. It was a beautiful sweater on her. It had the layered look; white long-sleeved shirt underneath with a short-sleeved sweater over it with grays, red, pinks and whites. It had little pockets at the bottom and a drawstring belt with little puffy balls at the ends.

But I knew how it would end. I knew how it would end the minute I bought it. Sweater material. Seams on the upper arm and upper chest. A drawstring belt. But it was my last ditched effort to think outside of the wardrobe box. I didn’t even have enough faith in this sweater to discard the tags. They were placed knowingly on my dresser after I cut them off. There have always been the outfits in the past that I purchased for her, thinking how adorable they were, but they hung in the closet for the entire season until they moved on to Bailey’s older but smaller cousin or Goodwill because she refused to wear them.

There have been such battles over clothes in the past. Over shoes too. The few times I stood my ground, swearing that I would not allow the adorable outfit or shoes go to waste, I’ve ended up getting a call from the school that a shoe was thrown across the room and Bailey was walking around barefoot, or that she was undressing in front of everyone. Clothes shouldn’t be this hard though. I myself have always been drawn to comfort over style. Don’t get me wrong, I still like to look cute but I’m not going to walk around in 3 inch hills, a tight skirt or some crazy, asymmetrical blouse just because someone says it looks good. So I have come to terms that only yoga pants, leggings and basic, blingless shirts will have a place in her closet. I have come to know what to expect and what to plan for.

I have proudly dubbed myself Bailey’s Pre-Planning and Expectation Specialist. I know as grumpy as heading to school makes her, there is a spot in the road leading to her school that gives her a “tummy tickle”. So I will speed up and we will sail over it, leaving our hearts in the air, just so I can hear that giggly exclamation, “Whoa!” and look in the rearview mirror to see those eyes wide as melons. I have come to expect extra time added to any trip out and about during the cold months where there is a jacket involved because the jacket will come off when she gets in the car and she needs a few minutes to get it back on before we exit the car. I know that if the seat belt is twisted in any way she will struggle back there as if trying to escape a snake’s coil. Being in a rush is futile when she is with me because she will move all the slower if she senses it. A hiccup will inevitably surface and a meltdown will follow if I try to get her to push through it.

As I mentioned earlier, each sentence she speaks she will immediately repeat in a whisper. I listen and wait for it before I respond.

I’ve come to expect that even with the charts posted in her room listing every step she needs to take in the morning, her executive functioning skills are just not there and I will still have to remind her to move the toothbrush around and to make sure she’s not putting her underwear on backwards.

I know that even though one of the things I love most about my husband is his ability to pull me out of the foulest of moods with laughter, his attempts to do the same to Bailey will only result in her screaming bloody murder. When the first utterance of a tease towards her comes out of his mouth I tense up and squeeze my eyes shut knowing what will follow.

I know to expect at least three meltdowns that involve flailing arms and grunting and kicking and screaming during a playdate because even after going over all the rules and all the expectations and all the strategies to handle frustration, there will still be occasions like her stuffed cat getting accidentally locked in a room or misplaced in a very large house, and all the strategies we reviewed were forgotten before we walked through the front door.

I know to expect that on rainy days, if we go anywhere there is hard flooring, she will become very agitated because of the sound of her wet shoes squeaking as she walks.

I expect that when music is playing her body will be moving.

I also know that the meer mention of homework will result in the grunting and breath-holding and the tensing up. I know that humming will follow if I’m saying something she doesn’t like or if I’m boring her. I also know that she hums when she is happy, or when she is concentrating.

I have come to expect that when she is excited she will tightly wring her hands together and tense up her jaw. I expect hand flapping when she’s anxious and pacing around furniture when she is thinking.

I know when she is expected to do anything in unison with a group, for example a performance with her class, that I can absolutely forget her doing what everyone else is doing. She will face the wrong way, she will do the wrong movements, she will invade her neighbor’s personal space as he or she tries to perform, and she will walk away from the group when she is supposed to stand close to them. She marches to the beat of her own drum. Always has. Always will. But I just keep the camcorder rolling. Because that is Bailey. And I don’t want to miss a moment of her.

I have come to expect that I need to adjust my expectations so I’m not trying to force her into the mold of who I think she should be. Of course I want her to learn that she has the same rules to follow as everyone else. But I also have learned to appreciate her quirks as part of who she is and not her way of aggravating her mother. She may never be the child who works tirelessly on a school project on the weekends or jumps at the chance to get her homework knocked out. But she is going to beg me to play with her and snuggle with her. Who could complain about that? She’s not going to be the kid who is always shy and quiet. But leaders never are. She may never jump at the chance to play with kids her age. But she and her four-legged best friend will always have a bond that no one can break. She may never be the person who turns the other cheek when she is wronged. But she will stand up for herself.

She is who she is. She is who God made her to be. He has a purpose for every one of her little quirks. And I look forward to her discovering each one.

Now I must go hunt down a Kohl’s receipt so I can return a certain sweater.

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Halloween

Well, after 7 loooong days of Bailey having a “stomach” flu (and I will spare you all the fun details, but it was BAD. I mean, anytime she is sick it’s bad because the slightest hint of the wheels in her stomach moving in reverse causes her to scream out in panic, convinced that she is dying…but this was fever up to 105, going to the ER, not eating and barely drinking anything for four days with major lethargy and me almost convinced IV fluids would be the only thing to pull her out of this bad) she is now well enough and at school. I am SO fortunate that I didn’t catch it.

Although I had several fun Halloween activities planned for her she was only well enough last night to hit up a few houses. So I held my breath and crossed my fingers and pulled what I knew would possibly be a costume reject up her legs and up her arms and securely fastened the velcro in the back. And I say “reject” not because of it’s seriously high level of cuteness…she LOVES cute…it’s because of the comfort. I detailed her lack of tolerance in a previous post, Seasons (click to read), and Halloween costumes are always tricky. But after a pep talk and some tugging here and there she decided to cooperate. Either that or she was just too weak to put up much of a fight. I’m thinking it’s the latter.

So off we went to beg for candy…Bailey, Cookie (our chihuahua), Easton** (my husband) and me. We decided to keep it short and sweet. Now you would think since this is technically her 8th Halloween she is an old pro at ringing a doorbell, yelling “trick-or-treat” and shoving her bag in a person’s face demanding free candy. But one of Bailey’s challenges is instructions and organizing steps in her head, and if it’s not a ritual that belongs to her she needs constant and clear prompting. Since Halloween is a once a year thing I reminded her of the script before we started. And this is how it went as we approached every. single. house.

Bailey searches for doorbell. Bailey finds doorbell. Bailey pushes doorbell repeatedly as I plead with her to stop and explain how rude that is.

“But I like to hear the different door bells”. Luckily it didn’t seem to bother anyone, with only one exception.

After the homeowner opens the door and says ‘Happy Halloween’ Bailey stands there and stares with an expression of ‘why are you here?’. I remind her of her line…

Bailey: ‘Trick-or-treat.’

Homeowner drops candy in Bailey’s bag.

Me: ‘What do you say?’

Bailey: ‘Trick-or-treat!’

Ugh.

Now when the typical kid collects her candy she will take off for the next house, determined to get as much loot as possible. After Bailey collects her candy she must stop and study each decoration. She has to touch them and talk to them. And since Cookie accidentally knocked over a small pumpkin in the walkway, Bailey has to imitate her and get down on all fours, put her nose on the pumpkin and knock it over again after I put it back in its place.

This year she seemed to have a much more difficult time remembering the steps of trick-or-treating. At first I thought maybe she was just out of it from being so sick. But when she made a comment about it being too quiet I remembered last Halloween and how excited she was at the simple fact that two of her friends and their parents walked with us. It was a smaller town and the neighborhood was flooded with kids, spooky sounds and music playing over loudspeakers, and decorations on every house. Each house we went to she was with her friends and there were usually several other kids hitting it at the same time… so she was in a group doing what the group did… following their lead. So, in a sense, they were there prompting her instead of me prompting her.

‘Lack of ability to follow social cues’ is a term you hear often if your child has an Asperger’s/Autism diagnosis. So now I’m a little confused. Although, if you think about it, what kid wouldn’t follow the social cue when it involves your peers getting handfuls of free candy.

I think in Bailey’s case it is more of her “imitating” than following cues. Just like her imitating Cookie knocking over a decoration, she would imitate the other kids trick-or-treating previous years. This year there just weren’t any with us to imitate so I had to TELL her what to do. And even then she couldn’t get it quite right.

When her cousins were in town she mostly refused verbal requests/demands when it came to her behavior, but she imitated their behavior like a champ.

*lightbulb*

The verbal imitation… reciting movies, shows. Even parroting sounds she hears in the environment.

Now I’m going over in my head how I can use this fresh ray of light. It just amazes me how if I stop long enough to pay attention I will learn new ways to help her, even if they seem small. For so long after her diagnosis I was just stuck in this rut of what does this mean for her future? What does this mean for her school life? How do I get the services and training for her that she needs to operate in this world successfully? All of these things are important, don’t get me wrong. But it’s so important to be still long enough so you catch the little things that can help your child. Especially when you’re like me, on a very long wait list to see a behavioral specialist that is covered by your insurance. That’s when the seemingly insignificant things can make a huge difference.

So I will now proudly add this little nugget to my growing list of trial and error “Do-It-Yourself” therapies. I WILL find a way to help her turn this challenge into a strength…

…while I help myself to her Halloween candy.

*Orange text indicates link. Click with confidence **not his real name

Seasons

It is now one of the two times a year I absolutely detest. The changing of the seasons. It’s not the season itself. I LOVE Autumn… the beautiful reds, yellows and oranges in the trees, the smell of apples and cinnamon, picking out pumpkins, carving them and roasting the seeds, the fall festivals, THANKSGIVING (especially this year because after three loooooong years I am going back home for a visit!), and to top it all off magical, precious, peaceful Christmas. No, it’s not all those things I dread with every fiber of my being.

It’s the two times a year I have to go clothes shopping for my very intolerant, inflexible aspie.

She doesn’t want long sleeves on her arm so she pulls and tugs then tries to bunch them up to her elbows. But that is uncomfortable so she will pull her arms out and stand there with both arms inside the shirt, or maybe with the shirt hanging around her neck. The jeans are too stiff and she will perform gymnastics on the floor, twisting her body this way and that to force them into submission, but ultimately will take them off. She can feel the shirt seam that runs across her back so she will tear the shirt off in a huff. Layers are intolerable. She refuses to sit in the car with her jacket on. Enter car with jacket on, take jacket off…when we reach our destination put jacket on (added to the wrestling match she has with the seatbelt every time she gets in the car because it MUST NOT BE TWISTED), and all at a snail’s pace… it’s a wonder I get anywhere on time. New shoes feel weird. Walk a few steps and stop to fidget with them. Walk a few steps and sit down in the middle of the sidewalk/grocery store aisle/mall food court to take them off and sit there frozen with a frown. Nevermind the people tripping all over her. Then she will proceed to let the entire town know just how displeased she is by yelling that the shoes disgust her.  I have given up on snow and rain boots. Too many meltdowns to count.

Oh, I’ve tried wrestling the clothes or shoes or jackets onto her body, but Bailey is a very tall 7-year-old who is 90% arms and legs. Plus she’s more than half my size. It ain’t a pretty tussle.

And once we have weeded out the rejects and washed the acceptable items so they are soft enough to tolerate, the flowers will begin to bloom, the birds will begin to chirp and the butterflies will burst out of their cocoons… Spring will be upon us. And it will begin all over again.