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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.


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.


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.


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.


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. ūüėČ 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.

Moving on

It has been months since I’ve been able to sit down and write. I feel awful because just as I was getting this blog started life got so hectic and my new outlet was placed on the back burner. So much to tell, but the condensed version is this: school for Bailey was MISERABLE. Our home life was MISERABLE. My husband’s job was MISERABLE. So we packed up and moved. Yep, call us nomads. This is move #4 in 4 years. But you won’t hear complaint one out of me. There is absolutely nothing about¬†where we were that I will miss. And we are all so much happier where we are.

My husband was offered a job by a former boss at a company in Philadelphia. This man is someone he admires, respects and generally likes. That is saying a lot for him as most people get on his nerves. He’s so much like Bailey. Or she is like him. Anyway, I am so happy that he has found a company to work for that holds so many possibilities for him. As hard as he works, he deserves to feel rewarded by his work.

On to Bailey, that school was just not working. She was drowning in a sea of kids and there were not enough life jackets (resources) for Aspies like her. She was expected to kick her feet and make it to the shore just like all the good swimmers (NTs). I was being flooded with emails of “issues” and “problems” but no one there had solutions. They had her IEP goals written up nicely, but no strategies in place to help her reach those goals. They would ask me to “talk to her” (insert hysterical laughter here) about her behavior. The last email I received from the teacher was her going on and on about how my daughter was being¬†“sneaky” about getting a ride in the nurse’s wheelchair because she complained of leg pain. One thing that is the truth about Bailey, when she feels any sort of pain, whether it’s level 10 or level 1, in her mind it’s ALWAYS level 10. She’s not trying to be “sneaky” or setting out to inconvenience anyone. Regardless, it became very apparent to me after that, and all the other emails I received from the teacher, for some reason this woman was taking my daughter’s challenges very personal and I had just about had it. I knew in my heart Bailey would never receive the little bit of extra understanding and compassion she needs at that school.

So¬†in a whirlwind of moving boxes and great timing, here we are. A¬†fresh start in southeastern Pennsylvania.¬†We are¬†unpacked, Easton has been at his new job since April 1st, and Bailey has been at her new school for one week. And both are happy. And that makes me happy. The school reminds me so much of the one Bailey attended in Ohio, and that is a really good thing. They have been nothing but warm, welcoming and so eager to help Bailey in any way they can. The special education teacher’s room¬†is right next door to Bailey’s classroom. The room has¬†a trampoline, a swing, and all the learning and¬†fine motor skill resources you can imagine. She welcomes Bailey to take motor breaks whenever she feels it’s necessary. There is a 1:1 para in Bailey’s classroom with her throughout the day. They’ve put Bailey in a social skills “friendship” group. They have been more than accommodating in every way I can imagine. After I dropped her off on her first day, I floated to my car with such a feeling of peace.

I can’t remember the last time I felt that way.

My hope has returned.


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.


“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.