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Monthly Archives: September 2011

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.
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Normal

It’s sometimes a double-edged sword, so to speak, when your child has Asperger’s, or mild autism. To the random outsider, she looks like a typical, energetic kid. Maybe even a little bratty. There isn’t a sign I can hang from her shoulders (not that I would want one) that tells the world “I have autism and you will have to be patient with me”. I can go out with her and there be no “episodes”. Only the select few that are at the right place at the right time get to see a show… The meltdown over a shoe tongue that is slightly leaning to the left, or the fit of rage over that stationary object that spotted Bailey coming and decided to spring to life and bump into her, …. And not everyone stops to notice the little girl* in the Wal-Mart checkout line who is spinning in circles, flapping her hands, and making crashing noises.

Heck, even at home I’m not quite sure which one I’m going to get lately. While she tends to be a little more on the quirky side at home because she relaxes here (as she should) and lets go of bottled up energy, lately I’ve gotten a few little glimpses of this child I’m not too familiar with. Out of the blue yesterday she asked me what I would do if I found $200. She NEVER asks me questions like that. Her questions are usually Toontown related, like “Why do all the toons wear white gloves?” or “Do you think I could be friends with a cog?” In the past there have been “why does 13 come before 14?” (I love trying to answer those!). But not too many questions that actually begin a real give and take conversation.

This past Sunday there was about an hour or so when she was particularly “normal” which is to say “abnormal” for her. I was piddling around, cleaning up, and she was sort of wandering around quietly. As I’ve said in the past, her wandering is never quiet. Even when she’s not busy with something like playing on the computer or with toys she is still making noises or verbalizing the playtime she’s having in her head. So I stood back and watched her to see where this was going. I see her follow Cookie, our little chihuahua, out on the balcony. I go a little closer so I can eavesdrop. I carefully peak around the corner to see what they are doing. I see Cookie with her nose up in the air, sniffing, and I see Bailey sitting down facing Cookie.

“Cookie, did you know that you’re my best friend?”

Ear twitch.

“I can tell you anything and I have something to tell you but not now because it’s not appropriate out here where people can hear.”

My curiosity is certainly peaked, but I keep quiet. There is a little more chatter.

Then silence. I sneak another glance. They are both looking down at the ground. At a bird, maybe?

Bailey starts fidgeting with her feet. She asks lightheartedly, “Cookie, do you think I’m crazy?”

I’m taken off guard and I wonder if I heard her right.

A minute later they both came back in, happy-go-lucky, and it was back to loud outbursts of laughter for no apparent reason. It didn’t seem to bother Bailey that she didn’t get an answer to her question, but it makes me wonder what in the world is going on in her head for her to use that word to describe herself. I wonder if she is beginning to notice how different she behaves from her peers. It takes me back to the pink burgers conversation and if I should think about trying the explain her diagnosis. But I’m so afraid that I’m going to screw it up. I don’t have her specialist here to help me with this. More than anything I wish I did. The appointment with a specialist here is a good six months out. So in the meantime it’s me that is left to read the books and research the web, looking for ways to help her cope, manage her sensory issues, be as abnormally normal as possible. Is it better to come clean with her diagnosis, tell her, tell the world, before I have a handle on exactly the best way to face it? Or do I cause her anxiety and heartache by confirming her suspicions of being a little different AND that it actually has a name? Or am I over thinking all of it?

One day at a time, I suppose. For now I’m just going to let her be herself. I will continue to arm myself with as much information as possible, so that when I do decide it’s time to have the talk I will have the answers that are available to give. I will make sure I know enough to feel comfortable with what I’m telling her. And I pray that she sees herself as the extraordinary blessing that I see her as.

*Orange text indicates link. Click with confidence.

Don’t blink

During our weekly movie night, Bailey exclaimed, “Every time I blink, I miss a part!”

Don’t I know it…

Alarms

So the other day Bailey’s school had their first fire drill of the year. As anyone who knows anything about Asperger’s knows, this can be an extremely big problem for an Aspie. Any type of alarm or loud, unexpected noise can cause great distress. This has been something my daughter has struggled with as long as I can remember. In fact, her fear and reaction to alarms should have been my first clue that something wasn’t quite right. But I just thought “hey, what child isn’t frightened by alarms?”

I remember her as a toddler running with sheer terror on her face as I, much too often, accidentally set off the burglar alarm at our home in Georgia. Her running through the house and collapsing in her grandmother’s lap after I, once again and absent-mindedly, opened the back door in the morning without first disarming that darn thing. And what was my reaction? I laughed. Not in a cruel way, of course, but I had to sort of chuckle at her overreaction. Early on we all dubbed her the “drama queen” in the family. I would comfort her and tell her everything was fine and mommy made a mistake. Looking back now I kick myself for reacting that way. Knowing the anxiety it caused her now that she can use her words. Thinking of all the times since, before and after her diagnosis, learning that loud sounds can be so traumatic for Aspies… Her fixation on where fire alarms are located in every single store we enter. Me visiting her at school and her pointing out every single fire alarm on the wall. Oh, and I can’t forget the last place we rented in Ohio… there was a smoke detector in every room. Watching her as she stood directly underneath it with her head all the way back, staring at it, whispering gently to it as if she were facing a grizzly bear in the forest, trying to make friends with it so it wouldn’t attack her. Even the look of panic on her face when the dryer would beep to let me know the clothes were ready. No matter how many times I explained to her that smoke detectors and fire alarms are here to help us, it never registered. All she worried about was that at any moment one would go off and send her into a frenzy.

All of that takes me back to those chubby, red cheeks streaked with tears falling from her big blue eyes that held only terror and confusion. And I feel so much regret for not hugging her a little tighter and a little longer.

With all the anxiety and commotion caused by the emergency drills in Kindergarten, and her being evaluated and given the diagnosis of Asperger’s Syndrome that summer, I knew well enough to make sure accommodations were made for fire drills during her 1st grade year. She certainly needed to know the routine in case of a real emergency, but everyone worked together to make sure there was as little stress for her as possible. They would alert her the morning of the fire drill so she would be expecting it, but then that caused her to fixate on the looming alarm all day until it finally went off. A little counterproductive as she certainly wasn’t going to concentrate on her assignments. So after a little tweaking they came up with a system of letting her know just a few minutes beforehand and an aide would stay with her every step of the way. She would still talk about the fire drill for days and still fixate on the smoke detectors at home and even had frequent nightmares about smoke detectors and fire alarms going off. The nightmares are what really broke my heart. She was so pitiful in the middle of the night, crying because of a sound that she imagined in her sleep. How can you fight that?

I also have to wonder back to the nights when she was 2 and 3, the same years of all my false alarms, when she would have what I almost describe as night terrors. She would wake up screaming in the middle of the night, I would go in and try to comfort her but she was absolutely inconsolable. She couldn’t verbalize what was going on because she was so hysterical. She would reach for me to hold her but then push me away once I did. That would happen a dozen times before she would finally, out of exhaustion, fall back to sleep. I have to wonder if she was having nightmares then about alarms. I can’t think of anything else she’s had such a fear of in her life.

During the IEP meeting over the summer with her new school I made sure the principle was aware of my daughter’s alarm “alarm” and she assured me they would stay with her and watch her closely for any signs of distress. Weeks later after finding out class assignments I also sent an email to the teacher to alert her. And sure enough, I picked Bailey up from school the other day and she told me they had their first fire drill. She proceeded to inform me that although the alarm was very loud, louder than at her last school, she was very brave. I told her how proud I was of her. I also got an email from the teacher stating that even though she was quite anxious, she handled herself very well. I started to think that maybe she’s becoming a little less sensitive to the unexpected sounds and alarms, and maybe that is something we can mark “conquered” on her sensory dysfunction list.

But at 2:30 a.m. the following morning, as I was woken up by cries of panic, I went into her room to find out she heard alarms in her sleep. I felt like that grizzly bear had knocked me down and was pawing at me.

So maybe I can’t mark it “conquered” just yet, but she has come a long way from running through the house screaming in terror. But it breaks my heart that her anxiety over something that most people see as such a little thing causes her to have nightmares, especially since I can’t fight off nightmares. It’s also so frustrating that I have to, once again, wait many months to get her the services she so desperately needs to help her with her anxiety issues and help her function in our world. I try to read as much as I can to help her in the meantime, but none of the books that I’ve read include a section on “dealing with sensory nightmares” in the sensory processing disorder chapter.

So until I find that treasure box of weapons to fight off the grizzly bear when he’s after her in her sleep, I will simply have to go into her room, climb in her bed, and hug her a little tighter and a lot longer.

Pink burgers

In the year since my daughter’s diagnosis, I have tried very hard to protect her from the “A” word. And the other “A” word. I have come to terms with the fact that her life will hold a few extra challenges than a typical person’s, but she is at the point where she has anxiety and stress any time she sees herself being the slightest bit different. While I’m still not sure when she will be emotionally mature enough to handle hearing about her diagnosis, with our recent move and starting a new school, I had decided now is definitely not a good time to spring it on her.

So with our move we lost a wonderful provider who had many great therapy plans for her. We are also now stuck with a 6 month waiting period to get her in with a specialist in our area that is covered by our insurance. I imagine just as we get good and settled with the new therapist we’ll be facing yet another move. That’s the pessimist in me talking…

In an effort to help Bailey with her coping and social skills in the meantime, I have purchased several books on Asperger’s and Autism Spectrum Disorders. I’ve printed out Tool Kits and Parenting Your Child with Asperger’s articles and so on. It was only a matter of time until my little girl, who the majority of the time is in her own little world, started noticing these books and articles lying around. I should have seen it coming or at the very least been a little more prepared. But there we were sitting at lunch and she pops off “Mama, what is Asperger’s?” I’m taken off guard not only at the question but at the fact that she even pronounces the word correctly.

I paused to organize my thoughts a little before opening my mouth. I tell her that Asperger’s is something that some very smart children and grown-ups have. That they may have a hard time making a LOT of friends, but the friends they do make are the very best kind. They may know everything there is to know about things that are very interesting to them, but they may struggle in subjects that don’t interest them very much. I noted that loud noises or bright lights may upset them a great deal. Children with Asperger’s may talk like a grown up or talk very loudly. Sometimes they may even recite phrases they’ve heard before as a way to communicate what they are feeling because they struggle to find their own words. They may seem very silly and have funny body movements, but that is their way of expressing themselves. I told her they may also have a hard time controlling their bodies, and that they may act before they think. Sometimes they may get so upset about something that they need a break in a quiet place to calm down. Sometimes they need movement to help them calm down, like swinging in a swing or jumping on a trampoline…that the movement soothes them. I tried to make it as simple and positive as possible so just in case she identified with what I was saying she would have positive thoughts and not get upset about feeling different or singled out. The last characteristic that I spoke about was simply that an Asperger’s brain has a hard time organizing its thoughts and memories and it processes things just a little differently.

She looked at me with those big, blue eyes, listening more intently than I think she ever has, and responded “You mean, different from ours?”

Ugh.

I kind of was hoping for more of a “Hey! That sounds like me! Asperger’s is SO COOL!” Ok, maybe that was shooting a little high but why did she have to say “different from ‘ours’“? It just confirmed to me that she is going to see herself as an alien and I’m so afraid she will dislike herself for being an alien. In reality, there are many ways she is like a typical child. But she has many quirks that do separate her from the crowd and I’m so dreading the day when her new schoolmates start picking up on how different she is and jump at the chance to point out to her how weird she is acting or talking. Her 1st grade classmates were an absolute Godsend. It’s almost as if they each felt a duty to protect her and help her whenever they could. They loved her quirkiness and talked openly with me about how funny she was and how much they liked her whenever I came into the classroom. But I know the older she gets the less understanding and compassionate her peers will be. It breaks my heart to even think about it.

Without giving me an opportunity to reply (thankfully) she said, giggling, “I thought Asperger’s was a package of tiny pink burgers. Big ones too.”

Her explanation does sound a lot better than my explanation.

I suppose the best thing to do until the time we have “the talk” is to continue to point out to her how wonderfully made she is, and that God doesn’t make mistakes, and He gives us all wonderfully different gifts to share with others. That the brain (and heart) He gave to her, He gave with a perfect plan in mind. I will also continue to point out to her that I wouldn’t change even the smallest thing about her for the whole universe.

Round n’ around she goes…

Bailey’s oldest quirk is “orbiting”. She’s had many that have come and gone but this one seems to have stuck around the longest. If she’s anxious or just has a free moment she is going around in a circle. She walks around tables, pools, playgrounds… heck, even me if there is nothing else around that has complete open space encircling it. She hums, sings, or makes crashing noises as she’s orbiting, completely oblivious to what is going on around her. She gets lost in her own little world. I can almost see what she sees and I wish I could get lost in that world too. Hers is filled with music and colors and dancing on clouds and snuggles. Her quiet singing made-up songs about love and missing someone makes me feel like I’m in a dream. Although when the hand flapping and crashing noises begin I feel like I’m in the middle of a 12 car pile up.

Last night as she was circling the dinner table I noticed our little dog was following her. Round and around and around. I thought to myself, ‘now that is a sweet picture’. So then I started to follow her too. Not chasing her just keeping pace. After a while she stopped humming and started to giggle. I had managed to sneak into her little world. I’ve never really been able to do that before. Usually when she is talking to herself or makes all the crashing noises and I ask her what is going on in her head, she doesn’t respond. But last night I managed to get a temporary pass in. And it was so much fun.

Phewwww!

As I drove up to the school building and saw the big grin on Bailey’s face and her arms flailing around (and a smile on the principal’s face), I exhaled. She had a wonderful first day.

*Relief*

Now, here we are at day two and I’m still kinda holding my breath. The staff at the school doesn’t really know her yet and her IEP won’t be updated until they have a chance to observe her for about two months. While she may have several great days, it only takes one little thing to set her off and turn things upside down. From what the principal told me at the IEP meeting they will have several emergency drills during the first couple of weeks. She has a great deal of anxiety over any type of alarm and I’m hoping that by me alerting the principle to that fact they will work with her closely during those times. I’m also concerned about the morning routine. The kids are kept in an extremely noisy cafeteria until being released to their classrooms and that is sure to send her into sensory overload. At her last school she was taken to a dim, quiet room where she could lay under a weighted blanket and read a book to decompress after being in the hustle and bustle of the cafeteria at lunchtime. Now her day is going to start out in that chaos? That is definitely going down on my list of things to discuss at our follow up IEP meeting.

For now I will take one day at a time and try not to worry too much about what might and might not happen at school. Just leave it in God’s hands to watch over her when she’s there. Now that she’s started school and we’re settled in I need to begin the search for a team to work with her on her behavioral and emotional issues. We need to restart what was interrupted with the last specialist. He had such a wonderful plan of action and I regret so much that we won’t have him to work with her. But I’m hopeful that with an Autism Speaks office so close by I will find some great resources here.

Wish me luck 🙂