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Monthly Archives: April 2012

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.

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.