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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

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Still against her will

So at about 12:45 a.m. Bailey, who was sleeping next to me as she does when her daddy is out of town, woke me up crying out and kicking covers. She complained of being hot so, realizing I felt a little warm myself, I went downstairs to turn on the air. When I got back in the bed I heard her crying quietly about her feet feeling uncomfortable so I reached over and grabbed her hand to help her to relax enough for sleep. It was on fire. I reached up and put my arm on her face and sure enough…fever. 103. So I put on my nurse hat and swooped into action with cold water to drink, a cold washcloth for her forehead, ibuprofen and Tylenol. I sent the school an email and her dad a text.

After reassuring her for the 30th time that she wasn’t dying, the same reassurance I must give her every time she is sick, she calmed down enough to go to sleep. Then the cycle began, as it always does when she is running a fever during the night….Her soft snoring would lull me back to sleep just long enough to have a crazy dream then be jolted awake by her thrashing and crying out, then me digging around in the dark for the cold compress. That went on about every hour…

She finally woke up for good at around 8:30 and seemed to feel a little better, even though her fever has teetered around 101/102 most of the day. Now, on any normal day the girl is all over the place. But today she has been as still as a stone. She has tried to will her body to get up and move, and even tried to talk me into taking her for a walk. She bravely sits up to show me she is better, only to flop over a few seconds later. Even Cookie, our chihuahua, realizes she isn’t herself and has nursed Bailey with her puppy kisses and stayed curled up beside her for the majority of the day.

There has been wordless yelling and occasional shrieks from her for me to help her, to make it go away. What a powerless feeling we mothers have when our babies are sick. I know I’ve done everything I possibly can but my heart breaks feeling like it’s not enough to take her discomfort away.

Now, at the risk of catching her bug, I am going to take advantage of some snuggle time… It’s a risk worth taking because maybe she will feel a little better with me there. Plus, it’s just plain irresisitable. And afterwards I’ll be cleaning like a mad woman because I’m pretty sure I won’t feel up to it tomorrow when I will be right where she is now.

Bolt

The blog Autism In A Word turns me into a huge puddle. Every one of her posts that I have stumbled upon leaves me in tears. The other day I read her post “Safer” (click to read, but be sure to grab some tissues) where she describes an incident when her daughter, Rhema, who is Bailey’s age but is more profoundly affected by autism, and is also nonverbal with a seizure and feeding disorder, disappeared as they were unloading from church. Apparently this is an ongoing and very troubling problem she has dealt with on many occasions. By the grace of God, Rhema has been returned safely to her arms each time.

It struck me how similar that behavior is in Bailey… the wandering and having no sense of danger. Bailey will also bolt at lightening speed when she is upset. On more than one occasion I’ve had to run after her in a department store, searching through and under racks of clothes to find where she may be hiding while nursing her anger or frustration. We can be browsing around peacefully and a minor collision between her and a sign can send her into a frenzy and she’ll run for the hills. I have an extremely difficult time keeping her with me when we go anywhere in public. Something will catch her attention and she will take off with no warning. No “hey mama, can we go look at that?”. Just swoosh, and she’s gone. Most of the time getting her to hold my hand is like a wrestling match with a monkey. Even when crossing the street, if something peaks her interest in the road she will snatch away from me to go back to look, paying no mind to the potential dangers around her. Most of our outings I spend using my acrobatic eyes… the left is on Bailey and the right is on whatever it is I’m looking for. Bailey’s cousin, Cowboy, said on more than one occasion during my family’s visit that Bailey needs a leash. I believe he’s on to something. She often wandered ahead or lagged behind the group, in her own little world. And just thinking back to her pulling from me to lean way too close to the incoming train to feel the rush of wind makes my stomach flip-flop.

I’ve stepped back before and watched her, keeping my distance, to see just how far Bailey would go on without me near her. It terrifies me…. how she will get lost in her head, start humming to herself, and simply wander off without a care in the world. She doesn’t watch where she is going so the possibility of stepping into the path of a moving car is a very real danger. She knows to look both ways when crossing but when she’s right there in the moment she just doesn’t. And she would make it simple for a person with evil intentions to take her. So I’m always right there, hovering.

I dread the day Bailey pleads for more independence. She is starting to notice that I am a lot more visible than the other mothers. I am trying to balance her need to grow with her emotional and social challenges. I try to keep a safe distance and still give her room to breathe. When I’m not there will she be able to snap out of her head long enough to pay attention to the world around her?

Will she look out for moving cars?

Will she bolt when something upsets her, oblivious to what is going on around her and what danger that may put her in?

Will she wander to an isolated place and disappear forever?

I’ve had the conversations with her. But will she be able to recall my words when it’s important? Right now she doesn’t feel the danger that is out there but I do. The worry eats away at my heart.

We all have to let go of our children at some point. We all have to trust that we’ve instilled in them the survival skills they need to make it from one day to the next. And most of them get it. But what about those that don’t? What about the kids on the very high functioning end of the autism spectrum who absolutely lose themselves to their thoughts, to what holds the most importance to them in that moment, to what is at the end of the tunnel they are looking into? What about the ones who throw every speck of caution to the wind… and give no respect to plain ol’ physical danger. That healthy respect that danger so rightfully deserves. This goes way beyond worrying that she may follow the wrong crowd.

Again, I am left with only one option. After all the warnings and cautionary tales, I can only put my trust in God. Without it I would end up in a straight jacket. With a stomach ulcer. And probably bald patches on my head. I already bite my nails down to nubs because of worry. I already have a crappy diet because of worry. I already lose sleep because of worry. I dread next year, and the year after, because of worry.

So I turn to one of my absolute favorite Bible verses:

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil 4:5-7)

And to keep the worrisome thoughts away I will try to think about these things…

Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–anything {that} is excellent or praiseworthy… (Phil 4:8)

So the God of peace will be with me.

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.

Comfort

(A few minutes after getting off the couch, where I was sitting next to Bailey)

Bailey: “Do you know what was uncomfortable?”

Me: “What?”

Bailey: “When you left my side.”

The girl makes my heart melt.

Visitors

After a wonderful weeklong visit with my mom, sister and nephews doing the tourist thing in DC, and another week of just trying to get back in the swing of normal life, I’m back! I’ve really missed writing here and have found that it truly is a form of therapy.

I can’t believe how fast the week with my family flew by. But we had a great time. The only real issues I had with Bailey was what I call her “sass mouth”. Sometimes she fast-forwards through the years and becomes a 15-year-old with nothing but disagreeable attitude. And it was all focused on me. Her “nina” (grandmother) became her new favorite and I was chopped liver. I didn’t mind that one bit of course. She gets so little time with our family and she absolutely loves them all so much. What flustered me was that I knew their time here would be painfully short and fly by at warp speed so I was trying to enjoy every second. I didn’t want so much of that time spent in a battle of the wills with Bailey. I couldn’t use the usual consequence of losing computer time because that was the last thing on her mind with her family here. Sending her to her room wasn’t an option because most of the time we were either on our way out the door to sight-see or we were already out and about. Although I threatened it once or twice, spanking isn’t really effective with her.

The frustration of her disrespectful words was more than I could take at one point and, after a morning of constant arguing and backsass, I told her to “shut her mouth”. In front of everyone. I knew the instant the words were coming out I would regret it. I heard myself in slow motion like the kid in The Christmas Story. Another instance when I really could have used that time machine I’m waiting for someone to invent. I make a point to never say things like “shut up” to her. I think it’s disrespectful and it certainly doesn’t teach her the proper way to speak to others. But I let myself get to the boiling point and it was definitely not my proudest moment.

I realized that all the excitement was really to blame for her being out of sorts. All the rushing from this thing to the next put a lot of pressure on her. She has to have downtime and got very little of that so eventually I realized I just need to take a breath and pull her aside whenever she got to be too much of a pickle. That really helped both our stress levels.

Bailey’s quirks were a little fewer during their visit. I jokingly attributed that to us keeping the kids moving so much that she probably didn’t have time to display so many. On several occasions she leaned in a little too close to the oncoming metro to feel the rush of the wind (sensory) and my panicked heart leaped from my chest onto the train tracks each and every time.  She orbited, was a little loud, kept her nina awake at night by humming the Angry Birds tune, and wandered quite a bit, which is one of the common problems I have with her out in public. But all in all I noticed she wasn’t as quirky as she normally is. Her cousins were great at helping me keep an eye on her. The oldest, French Fry (I call him that because the boy is absolutely obsessed with french fries. He even gave up the opportunity for dessert at Friendly’s for more french fries) was constantly making up games to keep her near. Simple games like ‘whoever stays closest to the group is the winner’ that as a mother I’m ashamed that I didn’t think of…but I’m sure it was only cool to her because he came up with it. Cowboy, the second oldest cousin and a horse lover (he wore cowboy boots every day, even through all the walking we did, which was a ridiculous amount of walking), was really good at…you guessed it…coraling her back to the group like a little stray calf. She drove them both crazy, playing with French Fry’s hair and copying every single thing Cowboy did, but I don’t think they minded too much. The youngest cousin, Optimus Prime (for his pure love of all things Transformers) was an absolute and complete angel. I want so badly to clone that little boy. He is only a year younger than Bailey and was a great playmate for her during the short time we were at home. They played with his transformers and her little dolls and stuffed animals “separately together” and they were both happy as clams.

And as quickly as we all rushed to each other with hugs on their first night here, they were driving away to go home. The week was a blur with just flashes of them in my head and pictures to prove that they were actually here. Bailey cried the first few nights after they left. It’s funny how I was worried when we first moved away that she would eventually forget the closeness she feels to them. But in the weeks leading up to their visit I got the constant “when-is-my-family-going-to-be-here” (every half-hour on the day of their arrival). When they first arrived and we were walking in the parking lot to their hotel she was literally about to explode with excitement. And then there were the tears that came after they left. All of it shows me how much she loves them and how close she feels to all of them.

It makes me extremely happy and extremely sad at the same time. So happy that she hasn’t lost that bond with them but so sad that she’s missing out on so much time with them. I try to remind myself that she could have very easily fallen through the cracks back home and her diagnosis may have come much later or maybe not at all. She would’ve been seen only as a strange, defiant, spoiled child. I try to remember in each situation to let go and place myself and my family in God’s hands. I truly believe He puts us where He wants us to be, if we trust Him. But it doesn’t make it any easier to be so far from my people. The people who are my umbrella on rainy days, my shoulder to cry on, my stone and slingshot ready to smack Goliath right between the eyes. Being so far away from them I just get wet, cry alone and get pushed around by the giant, all the while trying to keep him from spotting my baby. It would be so much easier if I could be back home with my army. I have to constantly remind myself of Hebrews 13:5 (Never will I leave you; never will I forsake you) and Romans 8:28 (We know that in all things God works for the good of those who love him, who have been called according to his purpose). Holding onto those truths is what gets me through.

I also have Thanksgiving to look forward to…

*Orange text indicates link. Click with confidence.

Colors

Last night I jolted awake at around 2 a.m. as I normally do when my husband is away on business. While I pile Bailey and Cookie in the bed with me to keep us all together and feeling secure, I feel overwhelmed at being left as the “protector” of the household. I mean, let’s face it, Cookie may annoy an intruder to tears with her yiping, but she’s certainly not going to fight one off.

After waking up like that my brain is wide awake. I usually jump on the computer, but last night I was determined to stay away from it and try to get back to sleep. That leaves my mind open to letting worrisome thoughts run amok. Worry over getting Bailey the help she needs, worry about her future, worry over the past, worry about how she’s being treated at school. Then it occurs to me that the very-unlike-her quiet spells that I’ve noticed in her lately may be related to school. She’s only been this way in the past week or so and it seems to happen after we get home, after she’s had time to check on her toons and terrorize the dog. Add that to her “crazy” question the other day and I’m starting to get really concerned.

Unfortunately this morning was one of those rushing-out-the-door-with-her-breakfast-in-one-hand-and-me-in-my-PJs-kind of morning. But after parking the car and walking with her up to the building I asked her the question I usually ask her after school.

“How is school going?” I ask.

“Great!” she replies.

“Are the other kids nice to you?”

Even though I can only see her profile I immediately notice her expression change.

*mumble*

“What baby?”

*mumble* “Fine”

“You can tell me.” I say.

“Not right now” she snaps.

Alrighty then. *Red flag*

I go into pissed-off-mama-bear mode because I just know there is a little twirp inside who has been mean to my baby. But I put on a smile, kiss her, and tell her she can tell me later. I emailed the special services teacher when I got home to ask her to check on Bailey today, to see if she can get Bailey to open up to her. So far I’m really not impressed with how they run things there but I’ll be darned if I’m going to sit by and let them ignore me on this. All this makes me really miss the special education teacher at Bailey’s last school. If she were handling this situation I wouldn’t have to give it another thought.

I know there will be mean kids out there. I know she will struggle with making friends. I know her peers will have a hard time understanding her. But I will not stand by and accept cruel treatment of her. Especially after the pool incident…

A  few weeks ago, Bailey and I were having a particularly rough day. After we both had meltdowns, I decided we should try to turn the day around and head to our community pool. When we first arrived she was the only child there and she made several remarks about hoping some kids would show up. You see, she has a great desire to make friends, but her quirks most often times get in the way, never allowing new friendships to last longer than 20 minutes. Aside from the remarkably awesome army of 22 kids in her 1st grade class, there has been only 1 or 2 children that have gravitated towards Bailey and proved to be true friends.

After a while a group of five girls showed up. I would say their ages ranged from 4 to 9. They proceeded to get in the water, squealing and playing games. After watching Bailey pretending not to watch them for a good 10 minutes, I encouraged her to go over and play. She followed her normal “I’m Bailey. You wanna be friends?” script and for a little while things went swimmingly, pardon the pun.

Enter the made up game “Colors” for which I still can’t say I’m clear on the rules. But it involved tagging and one person being “it”. I could see trouble brewing from a mile away, but I try to give Bailey a chance to work through things without me always jumping to her defense. That’s what we’re supposed to do right? Throw the kid in the ocean and let them fight off the sharks, otherwise they’ll never learn to take care of themselves. Right? OK, that is a bit dramatic, but you get my point. Anyway, I’ve been accused by her in the past of being too “there” and embarrassing her, so I try to give her space. So with her anti-executive functioning mind, Bailey has a difficult time comprehending instructions and you have to break them out in small steps. She’s not dumb by any means. In fact, she scored gifted on verbal IQ. But her filing cabinets are all mixed up and the incoming mail she receives gets dumped in a messy heap on the floor of her brain.

Now, when you have a group of little girls throwing rules out to a made up game, and the rules are changing with the wind, she’s definitely not going to be able to keep up. Along with the fact that she is not a great swimmer and graceful she definitely is not. It was obvious that she was struggling. So her frustration got the best of her. She quit twice and reluctantly rejoined twice. But after being ridiculed for being a quitter and a sore loser by the oldest girl, and breaking down into tears, I finally stepped in to pull her out of the pool. My heart was breaking and I couldn’t stand it anymore. Knowing how bad she wants friends and how excited she gets when kids are around…and this is the result. Of course Bailey didn’t want to get out of the pool. She wanted to stay in and continue the torture. So the girls got one last show, as did the two dads and grandmother who were sitting idly by, wearing their smirks. I could read their expressions… “What a brat. Can’t even handle a simple game at the pool.” I wanted to run away and hide. But I had to rescue my girl from those rotten baby sharks first.

After having to threaten to go in after her and throwing out a bunch of “I know, I know” while she’s yelling loud enough for Texas to hear her, I managed to get her dried off. I noticed the parents trying to gather their girls up to leave and I hear the oldest girl speak so firmly and disrespectfully to her grandmother, and I shake my head at what is tolerated by adults from their children. They won’t step in to keep their child from bullying mine, because they themselves allow their little monsters to bully them.

In the girls’ defense, do they really know any better? As I mentioned in a previous post, Bailey doesn’t have a sign hanging from her shoulders that lets people know the potential for fireworks shooting out of her ears and they don’t know how difficult it is for her to process rules that aren’t her own. But I would like to think that just one out of the group would’ve managed a little bit of compassion for the tears and obvious frustration. The adults…they do know better. And they should teach better. Any grown up that sits by and watches their children treating another child that way and not encourage them to show a little patience and kindness should be ashamed of themselves.

I try my best not to worry. But when I settle for any amount of time on thoughts of her in the near future, at the stage in her life when friends and being accepted are so important, I feel sheer panic in my chest at what she will most likely endure. Right now she is so incredibly sensitive about feeling or looking different from her peers. As true as it is, she doesn’t buy the “everyone’s different” business. In her 7-year-old, Asperger’s mind she wants more than anything to be the same. I’m so afraid that she is going to sacrifice her true self in an effort to be like everyone else.

So the other day I made a point to catch her when she was calm and quiet. That time that I know she will hear me and it will sink in, and maybe what I have to say will even be filed in the right place. I said, “Will you promise me something?”

“What?” she asked.

“Promise me that, no matter what, you will never change who you are to make someone like you.”

“I promise.”

For now that little promise will have to do. I know it’s not going to be that easy in the long run. But for now it will do. And even though I know there will come a day when I’ll be the uncoolest person in the world, I will always fight for her, I will always be her biggest fan and I will never let her forget it.

*Orange text indicates link. Click with confidence.