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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! ūüėČ

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.

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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.

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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.

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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.

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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 Chicken Patty Friendship Club

Since Bailey started¬†her new school I have witnessed some of the¬†friendliest children try to engage her. The kindness that the kids (and adults) have shown her¬†leaves me utterly speechless. It’s such a breath of fresh air after the negative experiences she had¬†at her previous school.

I have noticed a few instances, however, where Bailey has flat-out ignored a person who greets her.¬†One¬†morning as I walked her up to the school building, she was anxious while going over¬†her little¬†laundry list of worries. A¬†boy called out¬†to her from a few yards away and asked if she wanted to walk with him to class. Without a word she quickly looked in the opposite direction. The snub wasn’t directed at me but I sure felt the sting. When she’s so caught up with what is going on in her mind, she just refuses to give anyone else the time of day.

Another day, not long after moving here, we went to check out the local¬†library and a little girl approached¬†me to ask if she could say hello to Bailey.¬†I was delighted and said “sure!” but Bailey just stood there and look everywhere but at the girl. Soon after the mother approached us and asked if this was the new girl at school.¬†We¬†made a little small tall, all the while I’m gently nudging Bailey to speak but instead she abruptly spins around and¬†walks away. I felt a twinge of embarrassment that Bailey had once again come across a bit snobby, so I threw the “she’s a little shy” comment out there, which was such a lie. I’m¬†not in the habit of dropping the “A” bomb just as I’m meeting new people. Usually that comes if we spend any significant amount of time getting to know each other. Even with all that we did manage to set up a play date, which wasn’t any more successful. It started out promising with Bailey being a lot more enthusiastic and outgoing, but her perservating on certain topics quickly turned the little girl off and she obviously¬†became annoyed with Bailey very quickly. When we left I was not so¬†confident that we would be invited back.

Over the weeks Bailey has come home with stories from her classmates, such as the world coming to an end in May.¬†June¬†has safely arrived¬†but having to reassure her all through the months of¬†April and May was extremely tiresome.¬†I also found her in her bed a few nights ago terrified and crying¬†because some little jerk (sorry, I don’t typically call children jerks, but this kid was a big jerk) told her that her stuffed animals can come to life while she’s sleeping and kill her. My child has always loved her stuffed animals¬†more than any of her other toys¬†and usually will carry¬†one or two wherever she goes. So you can imagine her horror at hearing that her precious, fluff-filled friends would do her in. The effort it takes to calm her anxiety is so emotionally draining, and the little turkeys who tell her these absurd stories are really starting to tick me off. I get the impression that little girls this age typically ignore the nonsense and tell the stinky boys to ‘shut up’, but Bailey takes every word that is spoken to her to heart. She carries¬†them around¬†with her. They affect her entire¬†being.¬†The “that’s just kids being kids” business does not fly with me, especially when my little girl is left in a puddle and I’m the one cleaning up the mess.

There was also a recent birthday party that inevitably and glaringly¬†put Bailey’s awkwardness¬†on display. First it was all the sideways glances Bailey got from so many of the girls as if¬†they were looking at¬†a two-headed monkey. Then one little girl asked her why she kept making strange noises. But what really made my heart sink was when Bailey walked past two of the girls – with her noises and hand flapping – and watching them whisper and frown as they stared at Bailey walking away.

When it’s just me and her, Bailey is just Bailey… Quirky, silly, fun, sometimes moody like she’s 5 or 6 years older than she actually is. I love to hear the crazy made up songs she sings, filled with nonsensical words.¬†I don’t mind the pacing because I know it’s calming for her. I don’t mind the crashing noises or contorted facial expressions. I’ve come to just expect those little things as part of the day. But seeing her in a group of her peers, Asperger’s screams at me. Out of control, noisy, different, loud, odd, fixated, annoying,¬†emotionally immature like she’s 3 or 4 years younger than she actually is.

I worry¬†so much about her making friends. I worry that all the moving we’ve done so early in her life has prevented her from even having the desire to make friends. I¬†worry about her being made fun of, being bullied, pressured into doing things a more socially savvy child wouldn’t be suckered into doing. I also worry about her turning potential friends off by coming across cold, loud, and annoying. I worry about kids who don’t take the time to look past all the quirks and strange echolalia to get to know that bubbly, energetic, imaginative and adventurous little girl that I know.

But in the midst of all the disappointing encounters that squash my hopes of solid friendships for her, sometimes little things happen that make me feel lighter than air and replenish that hope.

One of the first few days I went into the school office to pick Bailey up, I noticed a little boy walk in with Bailey and Miss T, the Special Education teacher. Adam was in a pretty rotten mood and obviously annoyed by anything and everything. Over the next few days seeing him come in every afternoon, I got the distinct impression that he was a bit more profoundly affected by ASD than Bailey.

Over time I noticed him coming out of his shell a bit,¬†making a point to say goodbye to Bailey as we would leave, and eventually he even started saying goodbye to me too. One day after she told him she would see him the following day, he enthusiastically sat up straight and said “Bye Bailey, I love you!” Miss. T and I looked at each other with eyes as wide as saucers. Miss T said, “wow things move pretty fast in the second grade!” and I laughed so hard. It was incredibly sweet and innocent, and it made me happy to know that my Bailey, as difficult as she can be sometimes, has managed to get through the wall that Adam built for himself.

Weeks later when I was in the office to pick Bailey up, she and Adam were deep in conversation as Miss T and I talked about their day. She began telling me that she was amazed at how they are with each other. That Adam has never responded to anyone like he has with Bailey. She told me of how patient Bailey is with him when no other child in the school has been, and how he holds appropriate conversations with her when he usually struggles with them.

As I stood there watching them hug each other goodbye,¬†it hit me. I’ve been so concerned with neurotypical¬†kids accepting and understanding Bailey, and her not driving them away with her quirkiness, that I didn’t stop to realize what an awesome friend SHE can be to someone even further down the spectrum. Someone who looks straight through her quirkiness to see her, just like she looks through his quirkiness to see him. Bailey is capable of being the one that offers comfort to the child who is high-strung¬†and gets hysterical over discomfort (when she herself is¬†not in the middle of hysterics, that is). Bailey is the one that says “cool!” to¬†the child who comes up with the oddest name for a friendship group. Bailey is the one who¬†has patience with¬†the child who refuses to stop talking about¬†chicken patties. Her responses may not be appropriate or on topic, and may¬†even include ToonTown references, but she is still showing great patience.

Now when I see Adam, he is¬†relaxed and cheerful. It’s the best feeling in the world knowing that my girl played a part in that. All the things I have desperately wanted for her to receive, she already has in her¬†heart to give¬†to others. I just need to focus on helping her pull¬†those things¬†out more, instead of focusing on what others give her. I can’t make her peers magically accept all the little things about her that may turn them off. I would rather put my energy into making sure she’s equipped with all the ingredients to make the best chicken patty on the planet, so she is that¬†special friend to someone who needs her the most.