RSS Feed

Category Archives: young girls with asperger’s

Restart

IMG_3202

Wow, I can’t believe it’s been so long since I posted. All I can say I’m sorry folks. Our lives were upheaved again last summer and I have just stayed buried since. In a nutshell… things were pretty good in Pennsylvania for everyone except my husband. He took a new job, we moved to Florida in July, and I am now homeschooling Bailey. I decided that plopping her down in school #4 for grade #4 was not in her best interest because it has taken its toll on her (me too for that matter), so here we are. Summer break is here and I finally feel like I have time to sit down and pick up where I left off with my favorite “me” thing… writing about Bailey! 😉

So far things have gone pretty well. We are in a house, which means no more worrying about disturbing the neighbors with her yelling or stomping or flopping around and having to redirect her to her trampoline or closet. Ironically she is quieter here that she ever as been before. Go figure.

We successfully made it through 4th grade with all limbs attached (hers and mine!). I’ve never wanted so much to be great at something as I did her “learning coach”… and I don’t think I’ve ever had a challenge so scary and so exciting at the same time but that I so looked forward to every day. There were days I was gung-ho and ready to ride up on my winged horse, daily lesson planner in one hand and MagnaTiles in the other, and there were days I was reduced to tears. It can be maddening trying to teach a child as strong willed, sharp, and unfocused as Bailey.

Of note: Bailey did finish the year with straight As! I feel like I earned those As just as much as she did, so yes, I’m patting myself on the back! I truly believe the one-on-one lessons made a world of difference in her learning this year. She’s always done well in school, but I’ve felt like she has gotten lost in the classroom. Her mind would wonder, she would perservate on what toontask she would perform when she got home or if the part in her hair was a perfect straight line, and she would miss the math teacher explaining a new concept. Having that one-on-one time with her was absolutely wonderful and we could spend as little or as much time on a concept as she needed. By the time we hit the 3rd quarter of the school year, she was doing a good deal of independent work and I could step away. It has been good for both of us, her learning a little more independence.

IMG_2318

Other great achievements that Bailey has made are (sort of) learning to ride her bike (she still uses one training wheel) and she recently learned to tie her shoes. Some fine and gross motor skills have always been a challenge for her and anytime I would bring up either subject in the past she would go into panic-mode. She tends to let the fear of failing or the results being less than perfect stop her from trying certain things. I willed the patience to ooze out of me with teaching her both things (and believe me it took an army’s worth) and she finally did it. With both things she began with the panic and resistance, and when she saw that I was staying calm and quiet and ignoring her fit, she decided to let herself try. I could definitely see when it clicked and she was very proud of herself. I’ve decided to look into finger “exercises” I can have her do over the summer to help her improve her fine motor skills and hand eye coordination. It seems like such a little, insignificant thing to most people, but when you see your 10 year old child struggle with something so minute as tying a knot or putting toothpaste on her toothbrush, you do what you have to do to help her figure it out.

DW aquarium

We’ve gone on many outings since we’ve lived in Florida: to the beach, where we started a seashell collection and she was more content covering herself up with wet sand than anything else, the zoo, the aquarium, and the mother-of-all-places, Disney World. It was her first time and she’s had a blast each time we’ve gone. The girl is absolutely fearless when it comes to those rides and I struggle to keep up with her. As long as I can remember she has sought out any vestibular stimulation she could get herself into, and the roller coasters and drop rides are absolute heaven to her. Forget the character shows and meet ups and autographs (although I have managed to get her to humor her mom who is a big kid at heart to take pictures with Chip & Dale and Pluto), nooooo, she wants to go straight to the Tower of Terror or Rock ‘n Roller Coaster. I truly believe she is part shark… if she’s not moving with viciousness she’s not breathing.

oceanocean2

Her quirks and behavior can still be a challenge a big chunk of the time, and I still find myself having to apologize to the outside world for this or that, but we have made great strides in handling those challenges or being proactive so to avoid them altogether when necessary. I do occasionally see some behaviors that deep down scare the heck out of me because they could possibly turn into something destructive the older she gets, like picking at her pinky toenail until it comes off, scratching a mole on her face until it bleeds because it’s “bothering her being there”, or the fact that she will hit herself when she’s realizes she’s made an error in judgement. At this point I treat this behavior the same as if she has done it to someone else… She’s not allowed to slap the neighbor boy in the head so she’s not allowed to slap herself in the head either, and there are consequences if she does. I’m not sure how long that will be effective though. But for the most part her angry outbursts and lashing out has improved greatly over the past year. The last really bad outburst that I remember completely exhausted me and I clearly remember what it was over. I call it “The Multiplying Squirrel Catastrophe”. Sounds funny, right? Yeah, it wasn’t. A post for another day.

She still stims quite a bit but it’s definitely less noticeable than it has been in the past. Or it could be that it’s so normal for me and I really don’t notice much of it until we go out in public and I sort of see her from the eyes of others who don’t know her. I wonder what they must think of her and then I remember I don’t care. Not usually anyway.

wind

Bailey has made friends in the neighborhood which has been wonderful and terrible. It’s been great to be able to witness her interactions with her peers and to help her when she needs a nudge in the right direction. It hasn’t been all roses though. Another post for another day.

She’s made so much progress over the past year that I have found myself trying to push her even further. I know the older she gets the harder it’ll be to find resources for her so it would be great to get her to a point where she doesn’t need them and she can manage herself just fine. So I try to prepare her just like any typical mom has to prepare her typical kid for the big, bad world. I just have to use different means and modes to do so and sometimes it takes her longer to learn.

So that is the last year in a nutshell. I get a lot less free time, a lot less sleep, a lot less time to work on my own classes, and a lot more worry! I will manage though. We moms always do.

The Unsinkable Mom of an Aspie

RMS_Titanic_3

On President’s Day I had the brilliant idea to take Bailey to the Franklin Institute to check out the science museum and Titanic exhibition. She is an explorer and absolutely loves museums. It was a holiday and from the time we walked in we were rubbing elbows with rest of Philadelphia. It was too late to turn back in my opinion. I have the “I’m in it to win it attitude.” Once I get some place I might as well stay and make the most of it. But I soon learned that a nice quiet day curled up with Bailey, a movie and popcorn would have produced a lot less tears for her and a lot less gray hairs for me.

We started with the Titanic exhibition. We were each given a “boarding pass” that represented a real passenger with tidbits of information about them printed on it. At the end of the exhibit we were to look on a posted list to find out if we survived. She was very excited be dog lover that had a Westminster show dog. I was excited that I was a 22-year-old actress, half her age. She asked many times throughout the exhibit if I thought we survived. She was very interested in all the artifacts and asked lots of questions. She was especially interested in the giant “iceberg” set up in the large room near the end of the exhibit. She stayed next to it for a very long time, putting her hand inside all of the handprints of the people before her, running her hand along the entire thing. When I managed to pull her away from the iceberg we made our way through the rest of the artifacts and we came upon a piece of iron in a glass case with two very small holes at the top allowing visitors to insert a finger touch it. It had to be the only thing in the entire exhibit we were allowed to touch. After I had my chance Bailey walked over behind me and I turned away just long enough to hear her gasp a loud “oh no!!” I turned around to see her face twisting into a panic and I followed her line of sight to see the hot pink ponytail holder that was seconds before wrapped around two of her fingers, but now was sitting pretty as you please next to the 100-year-old Titanic artifact. Knowing it was impossible before I even tried I quickly shoved my finger into the hole in a vain attempt to rescue the ponytail holder before anyone in the crowded room spotted it. Of course my finger was several inches too short and I had nothing on me that I could stick down in the case to grab it. As I feel my face getting a red with embarrassment it occurs to me how very quiet this crowd is in this big room because Bailey starts crying hysterically that she will never see it again and she loves it and a lot of other things I couldn’t make out. For a few seconds I considered high-tailing it out of the exhibit and just leaving it there, but I knew that would ruin the rest of her day and our museum visit would be done for. I glance around at all the eyes in the room shooting us looks as I try to calm her down and remind her that she has a dozen of the SAME EXACT ponytail holders at home, but it didn’t matter. She “loved THAT one” and “would never see it again” and “would never be happy again!” I was thankfully able to find a very nice museum employee close by who called for a tech to come help. After a looooooooooong 15 minutes of Bailey clinging to the artifact display in hysterics, me half wishing I could just hide behind the gigantic iceberg and half fixating on the fact that a few of my baby’s long light brown hairs may take up residence with this hunk of iron from THE Titanic, and a lot of sympathetic stares, three more museum employees showed up with their invisible capes to save the day. A quick swish of a screwdriver and the hot pink ponytail holder was rescued. I can’t say how grateful I was that they were so nice about everything. One guy even threw out a merciful “happens all the time” when I apologized.

Thankfully the rest of our museum visit was uneventful. As we were sitting in the IMAX theatre watching the Titanica film and Bailey is fixating on whether the teddy bear belonging to the survivor being interviewed made it off the ship safely, she turned to me and apologized for embarrassing me (progress!). Then I felt bad that I had even muttered “this is so embarrassing” knowing the turmoil she was in over the whole thing but then I felt proud because not only did she just recall that something she did earlier affected someone else, but she apologized way after the fact. Any instance where she looks outside of herself is a major step in the right direction, so I gave her a squeeze, said it was ok and I was sorry too.

Later we met up with my husband, Easton, to eat at a restaurant that had absolutely nothing on the menu that my child would let touch her limps, besides tostito chips and salt. But she was in a new place, it was colorful and we were in “adventure” mode so everything was fine until she knocked over her glass and it shattered into 50 pieces. Still, not a tragedy. We apologized, paid the bill and left.

But the icing on the day’s cake was when we were walking through probably the largest Macy’s store I’ve ever been in to get to the parking garage where our car was parked, and Bailey decided to pull one of her nerve-racking “bolting” moments that I’ve written about before, here. It’s partly my fault and I should’ve known better. I’m usually very good these days with my Bailey filter. You know, the one where I keep everything I know will set her off to myself. I carelessly made a remark, something to the tune of “wow, you’re a hot mess today! First the ponytail holder and then a broken glass…” Now, to the unsuspecting person it’s a harmless comment. But to Bailey I’ve delivered the biggest insult and might as well just have told her she is the worst person ever to walk to earth. That’s what she hears.  And when she’s mad she runs. That’s how she processes her anger. So off she goes ahead of us like a cheetah and I lose her as she runs past a large floor sign into a sea of cosmetic counters.

And she’s gone.

Let me remind you, this is the largest Macy’s I’ve ever been in and it’s also the first time I’ve been in this particular one and I have no idea where to look. She absolutely just disappeared. Easton ran down one way and I ran another, feeling panic that the store entrance is right on a busy street and we’re very close to the entrance. I’m panicking, asking this person and that person if they’ve seen a little girl run by. No one has seen her. I turn around and start in the direction Easton ran, looking in-between counter after counter until finally I spot his head above everything and I pray he has her. I reach him and he’s holding onto Bailey and his face looks a cross between furious and relieved.

Time to go home, I say, enough excitement for one day.

You know how you always say “we’ll look back and laugh on that”. Well I’m there with regards to the ponytail holder incident and the broken glass is definitely small potatoes. But when I let myself think for a moment about how Bailey runs away without a thought of anything other than to just run, I get that panic in my chest all over again.

As I sat down on the floor of the living room later that night with my frayed nerves, I felt like I had actually been fighting my way to a lifeboat in a sinking ship, I just thanked God that she was home safe with me. It may have been a tough day but we got through it.

And in case you were wondering, my 22-year-old actress and her 41-year-old dog lover both survived the sinking of the Titanic. 🙂

A Day in the Literal Life

The other day after school Bailey jumped in the car squealing with excitement and announced that her class earned a “pajama day”. We discussed the different things they get to do… bring a stuffed animal, read to their stuffed animal, etc… I laid it on pretty thick how jealous I was. So Bailey suggested I dress up in pajamas and pretend to be a new student. I said “yes! I can put my hair in pigtails, put on my pjs, and bring a stuffed animal. I will say I’m a very tall new student!” I then asked if she thought they’d buy it. Her response:

“Well, it depends on how much it costs.”

I love that girl.

Tales of the 3rd Grade Nothing

Wow, it’s been a long time since I wrote here. I keep hearing that Steve Miller Band song in my head. I sort of expected writing over the summer would be difficult having Bailey home all day long with me. I find that it is extremely difficult for me to sit down and concentrate long enough to write something meaningful when I’m constantly up and down and up and down with her. Besides I try to use that time with her for one-on-one as much as possible. Then school started and I’m sure everyone can relate to it being an extremely hectic time. Then comes IEP planning and meetings and in-between emails and discussions with teachers about this and that. My days somehow have just gotten filled up with busyness. And some days they get filled up with laziness, when THINKING is the last thing I want to do. There are other days when I want to sit down and write but I feel like nothing but negativity would come out and I just don’t want to put all that out there. Maybe I should, maybe it would help… but I just haven’t wanted to dwell in it long enough to sit down and write about it.

Our summer was short and sweet. I tried to plan a fun outing once a week. For the most part I succeeded. A trip to Longwood Gardens, a tour of the Herr’s Snack Factory, a day at the pool, things like that. Bailey really thrives when we do things like that together, just me and her. She loves exploring new places, learning new things by doing, and being in wide open spaces. There were days when Bailey got in my bed in the morning and we snuggled and played computer games together. Days when we didn’t emerge from my bedroom until well after noon. Those were awesome days too.

I was very optimistic about 3rd grade because she had a great couple of months in 2nd grade after we moved here. She was happy to walk through the doors everyday. When I picked her up I heard stories of her great successes throughout the day. She honestly enjoyed school again. But from the time I dropped her off for Back to School camp (a 3 hour camp getting to know the teacher, classmates and classrooms) in August and she would barely acknowledge her new teacher, my optimism slowly started to roll downhill. She has fought me tooth and nail on just about everything that is school related. She has been extremely defiant and disrespectful to her teachers and her aide, she resents the fact that she even has an aide, and she pushes away most attempts by her peers to be friendly. She has become more and more aware of her differences and resents herself for every single one.

Bailey’s self esteem has gone downhill as well. While I may go a week without hearing the negativity, there are very long stretches of “I hate my life” “I hate myself” “Everyone thinks I’m stupid” along with many others. I honestly expected this. But years down the road. Certainly not at 8.

My biggest personal struggle in all this is I feel like we are pretty much in limbo. Again. Bailey isn’t receiving any services outside of school because we were pretty confident that they just weren’t needed. We’re way past the early intervention resources. Don’t get me wrong, I don’t think Bailey would be as far along as she is today had it not been for the intervention specialists working with her in Kindergarten and 1st grade. But we’ve reached a point where new challenges are popping up. She’s changing, her view of herself and the outside world is changing, what she’s experiencing is changing. Her peers are starting to pick off the differences they see in each other. Bailey’s quirks are under the microscope. I’ve determined that right now, at the very least, she needs some sort of therapy to continue teaching her coping strategies. I also need help with teaching her the skills to cope with what comes her way. She still needs constant social coaching. And she definitely needs someone, other than her mother and father, to help her see what a wonderful kid she is. But, we are in limbo. I don’t feel confident enough that we’ll stay put long enough to start a relationship with a therapist due to my husband’s job situation. She’s been uprooted and plopped down so much over the past 4 1/2 years so how can I introduce her to someone, to expect her to develop a trust with, only to say ‘we’re off again!’ Not only that, I want so badly to get her in music lessons. I think she would absolutely thrive with it. But with not being sure what next month will hold I feel like I would be starting something that can’t be finished. At least not here. I’ll either shell out a lot of money that will be nonrefundable, or she’ll have a wonderful instructor who we’ll have to snatch her away from again, or the lapse in ending here and starting up wherever we end up would cause her to lose interest.

Now you know why I haven’t been too keen on getting on here and spilling all this out and dragging you all down with me?

It’s not all bad though. Bailey has days that are a great success. She has short-term and long-term goals that she works towards and is a part of the process in picking her incentives. She helps to decide what “signals” she can use with her aide when she needs some space or a break. She is making great strides in group to build her conversation skills. She had a recent playdate that was a success. She is becoming more aware of other people’s moods depending on their facial expressions (huge!). She has also begun to show genuine empathy when she sees someone is down (again, HUGE!). I have no doubt that she has always felt empathy but knowing just how to show it, as with most aspies, has been a challenge for her. She’s gone from the 5 year old that would blankly stare at me for a moment while I was sobbing then leave the room or laugh hysterically if I accidentally hurt myself, to the 8 year old that sees the distressed face of her aide and asks if she is the cause of her not-so-great day or runs to put her little hand on my back after I’ve slipped down the stairs (again). There was also the other day when I picked her up from school and she proudly announced that she was going to try sitting on the other side of the car. This was a really big deal since the seatbelt goes the “other” way and feels so weird to her. After a little squirming and protesting she settled into it for the 8 minute car ride home. She isn’t interested in trying it again any time in the near future but I have to give her a big round of applause for stepping so bravely out of her comfort zone. So, it’s not all bad or a bunch of “nothing”.

Oh! And on a personal note, I’ve gone back to (online) school! I’m working to get my Human Resources degree, which is the field I was in before Bailey was born. I was good at it and had successfully earned my PHR (Professional in Human Resources) certification. Then I had her and everything else melted away. 😉 I figured it was time to start doing something big for myself.

So there it is. The good, bad and ugly of my absence from my blog. One thing I do know is I do enjoy writing even if I’m not great at it. It helps “get things off my chest”. It helps me stay connected to people who are going through the same things. I promise myself I will do better at setting aside this time for myself and anyone else who wants to listen.

Pink, Blue and a side of Green

Bailey, a few days old

I have been struggling for a while now with the absolute ache in my soul to have another baby. Every fiber of my being longs to have one of my own to hold in my arms. It’s more painful that I can explain to hear even an utterance about a cousin of mine, who is expecting her third child. I want so badly to feel joy for her, to join in with the others who express sheer delight that, after generations of boys in her husband’s family, there is finally a girl on the way. But all I feel is envy. We are the same age and grew up very close, and all I could muster was a puny “Congratulations!” on her Facebook page. I have two other cousins who each have babies under a year old. My brother has four children and my sister has three. When I’m out and about and I see a pregnant woman or a mother with 2 or 3 children in tow, I literally have to take a deep breath and look away, like seeing them will burn my eyes. In actuality, it burns my heart.

My older sister and me

My desire is not purely selfish. As much as I would once again cherish smelling that new baby smell or running my fingertip over a soft, plump cheek or staring at him or her for an eternity, I want more than anything for my daughter to have a sibling. When the inevitable question comes from every new person she meets, “do you have any brothers or sisters?” I don’t want her to have to answer no, because I know it makes her sad. I can see the disappointment in her eyes. Like since there are families all around us with multiple children, it’s one more thing that makes her feel different from her peers. Even with all the fighting she knows comes along with having a sibling, she wants so badly to have that live-in playmate. Someone she can run to when mama and daddy are being unfair. Someone she can tell secrets to and have imaginary adventures with. Not to mention the benefit of having that constant exposure to another child that could possibly help her develop the social skills she desperately lacks. There have been times when she’s begged me for a little sister. Heck, she would probably even love to have a little brother at this point.

Also, I don’t want her to have the sole burden of taking care of her dad and me when we get older. I’m not sure it’s something she’ll even be able to handle. That is something else that I can’t think about right now though. That is a “tomorrow” worry.

The plan was to have 2 kids four years apart. Well, there were many stressors in our household from the time Bailey was a baby that kept having another baby at the bottom of the to do list. When Bailey was 4 we uprooted and moved to Boston. A year later, off to Ohio. A year and a half after that, Virginia. Nine months gone and here we are in Pennsylvania. Somehow in the middle of all that uprooting, financial struggles,  Bailey’s diagnosis, school stress, work stress, social struggles, and being tossed around in the autism ball pit, there just hasn’t been a “good time”. Whenever I bring it up now, I’m shot down before I even get the “b” out.

I try to remind myself that Bailey isn’t a typical child and requires a great deal more of my time. Would it be fair to bring another baby into the mix? Would I completely lose my marbles, as I have so few left as it is? There is also the possibility of having another child on the spectrum, as apparently studies have shown there is a greater likelihood of siblings having an Autism Spectrum Disorder.

Maybe God’s plan for me is to just have this one child. Maybe He knows that she needs more attention and more focus to be on her. Maybe He knows better than I do that I have a very difficult time focusing on more than one thing (just like Bailey) and another child would take away from the extra care that Bailey needs. Maybe He placed all those annoying obstacles in my way throughout these recent years because he knew that if I had it my way, I would have bitten off more than I could chew… and the one to suffer would have been my daughter.

Those realizations don’t make it any easier though, and it doesn’t make it hurt any less. But when it starts to hurt I can always go to that super silly, gangly 8-year-old bundle of energy and wrap my arms around her. And when she wraps her arms and legs around me in return and nonchalantly tells me she loves me… the hurt stops and I feel like I have everything I need in one sweet package.

And I’ll do whatever I can to make sure she knows it.

Looney Toon

Today I have major brain drain. Bailey has done nothing since opening her eyes this morning except talk about the Toontown website, humming the theme music, and repeating chat phrases. I have tried in vain to divert the conversation to a different subject, but it is useless. She always returns to telling me about Lollipop (one of her toons) recently buying a new emotion: furious, and that “OMG” it cost her 500 jelly beans; and how the reward for her current “toon task” is being a tiny toon for a day; and let’s not forget the constant repeating “eepy eep eepy” which is the gibberish that pops up in place of an unapproved word, like “poop” which unfortunately is a word Bailey likes to use. She even mimics her toon’s emotions. For example, when she clicks on “angry” Lollipop will crouch down, clinch her fists, and grit her teeth. When Bailey is angry, she will do the same thing. When Lollipop is successful at a game and wins lots of jellybeans, she does a happy dance that involves tapping her feet and doing the 80s “arm wave dance”. Bailey will also do the same dance when she feels happy. It is a little hard not to laugh, even at the angry one.

I don’t know why it’s bothering me so much today. This is how it’s been going for weeks and, except for a sort break from it when she discovered Eden on the iPad, it went on for months and months after she first became a member of Toontown. I guess I’m just becoming increasingly more frustrated at the fact that I can’t hold a conversation with my 8-year-old daughter. When she wakes up in the morning and I ask her if she had any sweet dreams she tells me how she dreamed that a COG (Toontown bad guy) was in her toon’s estate, which apparently is something that cannot happen in “real life”. Or that when I’m reading her a bedtime story she will interrupt me mid-sentence to tell me about how she saved a building in Toontown that had been taken over by COGs and her toon’s picture was now hanging in the building. Or when I pick her up from school and ask her what she did in art class that day, she will respond “oh, I painted a bird. I wonder if the blue shirt I ordered from the cattlelog for Lollipop has arrived” or “I am completely out of gags so I need to go for a ride on the trolley so I can get more to defeat the COGs… can I get on Toontown when I get home?”

I don’t know whether to be sad that her fixation has taken over so much of her life. Or that I should just be thankful that she is engaged in something. There are so many children with Autism Spectrum Disorders who are much lower functioning than she is and their parents struggle for ANY type of communication or display of interest.

I also wonder how much I should encourage or discourage this fixation. We have the rule of 1 hour of computer time on school days and 2 hours on the weekend, and that is pretty much set in stone. But the remaining 22-23 hours in the day she is still so focused on it that any free time she has she spends it doing what she was doing this morning: pacing and spinning around the living room, humming the Toontown theme song and whispering something about setting banana gram traps. I take her to town with me to run some errands, but she talks about Toontown the whole time, telling me what she is going to do the next time she logs on. I take her to the playground, and she bombards potential friends with questions of whether or not they play on Toontown.

All this also makes me wonder if I’ll ever get to experience the heart-to-heart, mother/daughter talks that are supposed to be included in this package. But I have to push that thought far back in my mind. There are things about tomorrow that I must worry over before I can jump that far ahead.

Eight more weeks of school and I’m already thinking how in the world am I going to be able to fill up the summer days so she is kept busy with something other than Toontown… so she is more engaged in the real world. And so I don’t become a looney toon.

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.