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Monthly Archives: October 2011

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…

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