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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.

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.

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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 Unsinkable Mom of an Aspie

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On President‚Äôs 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 ‚ÄúI‚Äôm in it to win it attitude.‚ÄĚ 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 ‚Äúboarding pass‚ÄĚ 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 ‚Äúiceberg‚ÄĚ 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 ‚Äúoh no!!‚ÄĚ 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‚Äôt 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‚Äôt matter. She ‚Äúloved THAT one‚ÄĚ and ‚Äúwould never see it again‚ÄĚ and ‚Äúwould never be happy again!‚ÄĚ 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‚Äôs 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‚Äôt say how grateful I was that they were so nice about everything. One guy even threw out a merciful ‚Äúhappens all the time‚ÄĚ 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 ‚Äúthis is so embarrassing‚ÄĚ 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 ‚Äúadventure‚ÄĚ 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‚Äôs cake was when we were walking through probably the largest Macy‚Äôs store I‚Äôve ever been in to get to the parking garage where our car was parked, and Bailey decided to pull one of her nerve-racking ‚Äúbolting‚ÄĚ moments that I‚Äôve written about before, here. It‚Äôs partly my fault and I should‚Äôve known better. I‚Äôm 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 ‚Äúwow, you‚Äôre a hot mess today! First the ponytail holder and then a broken glass‚Ķ‚ÄĚ Now, to the unsuspecting person it‚Äôs a harmless comment. But to Bailey I‚Äôve delivered the biggest insult and might as well just have told her she is the worst person ever to walk to earth. That‚Äôs what she hears.¬† And when she‚Äôs mad she runs. That‚Äôs 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 ‚Äúwe‚Äôll look back and laugh on that‚ÄĚ. Well I‚Äôm 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. ūüôā

The Basics

This is a link to¬†10 Key Things To Do For Your Child With Autism shared by the awesome Ellen Seidman over at Love That Max. It was written by Kerry Peterson, Board Certified Behavior Analyst and Director of the¬†TrainIn Program at Kaufman’s Children’s Center. It’s so easy to get overwhelmed, especially in the beginning, so read this list and¬†take one step at a time.

http://www.parents.com/blogs/to-the-max/2012/04/05/uncategorized/10-key-things-to-do-for-your-child-with-autism/

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. 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.

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.

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.