Saturday, February 24, 2007

Time stands still

The other day, I finally felt like Lizzie's OT was hearing me about her behavioral issues. I mentioned a concern about Asperger's and she was quick to point out that giftedness alone can explain some of her quirks. I'm not sure. She is nearing three. That really is too young to make a definitive AS diagnosis, but at the same time I feel like she needs something. Some way of helping her through the sometimes paralyzing nature of just being herself.

The OT did her best to engage her in some pretend play with Cora's new dollhouse. She didn't get very far. Lizzie was mute and unable to play along and pretend the part of the daddy or anything. She eventually did follow along and make different toys sit at different spots at the table for a meal. But that's really not so out of the realm of what she always does. Arranging is the thing. When the OT and I went back to talking, Lizzie went right back to rearranging the toys and furniture in the dollhouse. She does this with her Little People and the Little Tikes school bus. That's her play. The end in it self. There is nothing past the arranging. The bus never gets to school. You have to prod, prod, prod. When it's me, she just gets mad and yells at me ...."leave me be" or similar.

One suggestion the OT had was for things like this or the incessant book reading ....set a timer. This way there would be something in between me and her telling her that it was time to stop and move on to something else. Well, I tried. She has a set of Sesame Street blocks I got for her on eBay that she loves to stack, arrange or whatnot. She calls it building a "castle" sometimes, but it usually isn't much more than blocks stacked in groups of 8. She was starting to lose it when Cora dared touch her "buddies" Cookie Monster and Elmo so I let her move them to the table and set the timer there. She ceased playing and began protesting the existence of a time limit. "I don't like the timer go beep, beep, beep at me" ...this was with 5+ minutes to go (I had only set it for 7 as she had been playing with the blocks for 20+minutes already). She understandably pitched a fit when her time was up. I tried again today with her 'ibrary books and she quit reading and clutched the pile of them to her chest. Imposing any limit was just more than she could deal with. Change just doesn't happen without great bodily or verbal protest of some form or another.

I can only surmise that for her time stands still. There is only now and what she is doing right this very minute. She will move on, but it doesn't flow for her. Another suggestion was to take pics of things from her daily routine and set up a daily order of events so she'll know what comes next. The past few days have seen me scouting out various local parks, stores and what have you for drive by pics along with ones to represent bath time, nap time, meals, etc. I went ahead and ordered a laminator for these as we'll also be making a ring of index cards that she can take when we grocery shop. Maybe just maybe she'll focus on something other than what registers are open or which aisle we're shopping in. I don't have high hopes. Every Monday morning shopping trip is like the movie, Groundhog Day, except the script is a little less enthralling. "Mommy, number 8 is open!! ....I want to check out at number 8, not number 5.... I don't like number 6.... I don't want to be in aisle 5 ...."

Tuesday, February 20, 2007

Figuring it all out

I hate not knowing more than I hate anything right now. That's where the worry is. I hate the awful responsibility of not knowing if I'm doing enough for my girls or if I'm making the right decisions.

We see the neurologist for Cora soon and it's looking more and more likely that she will get some form of CP/hemiplegia diagnosis. Finally today it seemed like her PT saw what I have been seeing all along about her fluctuating tone and how she holds her fist. It's almost like she didn't believe me up until now until she saw that she might also have some involvement on her right side. She was also very unsteady on her feet during her PT session today. I hate that it "helps" her case more when she is at her worst.

She is something though, that Cora. She is so driven to move and get going --not to mention get into everything. She seems to devise ways around the limits of her functional grasp with her left hand and hasn't known anything different. I get a bit upset on the days when she seems to be falling more often. She just gets up and gets on with whatever she had in mind. Or she gets mad and demands help. For her birthday, she got the Fisher price learning piggy bank toy and she can't quite make her hand and wrist rotate as it needs to. Sometimes I can turn the pig so the coins fit a bit easier for her. She resists most attempts to try and help her hand over hand. But oh the yelling when she can't figure out why her body won't work the way she wants it to. Give her time.

Time. I've feel like I've waited too long with Lizzie. But I think that's more because looking back I see that she was always the same as she is now. She was our first and even though I've had a lot of babysitting experience, it's just not the same. She was such an intense baby and at times would just scream and scream and scream. I used to think that it was just her untreated reflux, but now it's seems that it was and is her way. Life comes at her hard and she deflects what she can and carries on. I have to remind myself too, that she also has only known life like this.

It's just so hard to soothe her some days. I despise hearing that all two year olds have tantrums or like to be in control or this, that or the other thing. It's different. There's just this qualitative difference to everything about her and it's only so much more apparent now with her sister in our lives. Cora is as engaging as Lizzie is anxious and retreating. Some days are better than others. Some days I just want to cry. Some days I do.

We finally had some snow of note lately and I bundled up the girls and took them out back to play. Or tried to anyway. Cora was too cold to care much, but Lizzie had wanted to go out in the snow. But when we got out there, she had no interest in playing anything. Not in her toy house, not giving the snowy slide a try. Nothing. She was content to pace around one small patch of snowy patio and draw letters and pictures in the snow. I failed even to get her to talk to me about what she was doing or why it was fun.

The things she does, her obsessions du jour or her long-running perseveratives. Are they fun? Functional? I just don't know. Some days I hate that I ever showed her a letter or a number or taught her their names or sounds. I hate that I ever caved and let her watch Sesame Street. It's not as if she wouldn't have found something else to take the place of her comforting "things." I'm just angry sometimes I think because I don't have the joy that I would like to have. I see her doing things like lining up her Sesame Street blocks, minus the letters that spell Elmo and I only marvel a tiny bit that she knows how to spell elmo. I sigh to myself. I see a nonsense activity. I anticipate the tantrums ahead or the insistence that Cora not touch her latest "castle". And it's not a matter of sibling rivalry. It's just not. It hurts her to jump out of the routine and comfort of stacking/aligning/arranging letters/paging through books.

I want that joy back. I don't know quite how yet. The larger part of me know necessarily has to focus on finding out more about how her brain works. Do we pursue a diagnosis beyond the dyspraxia? Does Asperger's fit? Is she "just" overly anxious and perhaps somewhat gifted?

Sunday, February 11, 2007


And then there are good things, sweet moments, inchstones of progress... Cora is turning one and at her birthday party she did what most one year olds enjoy doing...smashed cake. She had no interest in licking the frosting, but she smeared my face with it when I asked for a bite. And then my brave husband let her feed him a fistful of cake. She tried two tiny bites off a fork. Earlier, before the cake smashing fun, she mooched some of my quiche and wound up eating more than a piece of her own. I'm guessing the liveliness of the party combined with my holding her and pacing in the kitchen while feeding her had something to do with it. I know that most all of the time that I put her in her high chair, she is just braced to resist and fight eating anything I might offer. But for today, I can focus on the small little inchstones....a girl enjoying her birthday cake and sharing lunch with mama.

Minimize this

I find myself becoming more and more angry, frustrated and fed up with Cora's therapists. She receives feeding therapy as well as physical therapy for her gross motor issues and has not yet been diagnosed. We see the neurologist this month and it's clear to me that she has a mild hemiplegia. Over the past few weeks, both of her therapists have tried to minimize my concerns in countless ways by pointing out how it isn't a "classic hemiplegia" or that perhaps some of her issues will correct themselves cognitively. That makes no sense at all. Just because she will know she wants to move her body in a certain way doesn't make it possible.

The other night she was trying to chase Lizzie around upstairs in their new game that involves racing in and out of their rooms and up and down the hall. Cora was trying to go as fast as she could to keep up and her left hip just couldn't keep up. She was swinging it out to the side and in my googling tonight it has a name...hip circumduction. I fumed to read that. That is something I had mentioned to her PT this past week and it was minimized. She made no attempt to explain why should would do that.

I struggle at times with minimizing their issues because I know there are worse things we could be dealing with. But we're not. This is my reality every day. It's my job to help them be their best selves and achieve what they can achieve and push against the limits of their current physical abilities. I won't minimize my concerns. I'm going to be that annoying mother who asks too many questions and already knows that answers she is supposed to be getting. I wonder if they wouldn't do better in private physical therapy and not the play approach of early intervention.

I hate looking at pictures and seeing Cora's awkward posture and the way she clasps her fist so tight at times. Just even something as simple as bouncing her on my knee isn't simple to me. She reluctantly holds my hands and her left shoulder is incredibly tense as if she's holding on for dear life on that side. I can't even imagine if that hurts her to have to compensate that way. Something isn't right and this mama isn't going to settle for waiting and wondering.

Saturday, January 27, 2007

It's a grieving thing

I know it is. I know that's what this is. This thing I can't quite shake. For most of the last week and a half since we got Lizzie's* diagnosis, almost anything makes me want to cry. It's not like I haven't known all along what her quirks and issues are with regards to her gross motor delays and behavioral issues. There is just something about getting her diagnosis (developmental coordination disorder/dyspraxia) that made it more real. It's not going away. It affects her in many ways and she will need continuing therapy to help her progress.

It doesn't help that the week following her diagnosis I had to have her first meeting for the transition from Early Intervention (EI) to the Intermediate Unit (IU) as she'll be turning 3 this Spring. I had been told that because she is so bright and doesn't require speech or a resource teacher that she won't qualify for "just" OT or PT for her feeding and gross motor issues. Not good enough for me. And after her diagnosis....really not good enough for me.

I am so burnt out from researching her diagnosis and the laws and state codes related to EI and the EI/IU transition process. But I keep on with it and do my best to do the best for her all the while wondering if it's my fault in the first place. Something I did during pregnancy, something from her horrendously long induced labor, something, something, something I maybe could have done differently.

It really won't make a difference now. It doesn't make a difference now. I'm reaching so hard to speed ahead to that place of acceptance where it'll all be okay. But right now I'm just stuck on sad.

And then multiply it by two. Her younger sister, Cora*, also receives EI for feeding issues related to reflux and PT issues that are just now coming to light. She has always had trouble with extension which we thought was reflux related. She only ever liked to roll to one side. She never took to cross-crawling and instead did a kind of crab scooting thing. But I've always sensed it's something more than that. When she claps her hands she holds her left and claps to it with the right hand. I mentioned some of my concerns at her 9 month well check and the pediatrician sent us to the orthopedist who pronounced her "fine" as far as he concerned, but maybe see neurology. So that appt is coming up next month. In the meantime, she has started walking. I was of course thrilled to see this and at 10 months even, when her sister didn't get the hang of walking until 13-14 months. But the less she crawled, the less she used that left arm to scoot with and the more worried I became. Her PT of course noticed some of the issues with her "back kneeing" or hyperextending on the left as well as her left foot toeing in. But now it's even more pronounced that she holds her left arm up to her side and her fist closed as she walks. She will play with the left hand, but reverts to the fisted position. I know it all points to some sort of mild hemiplegia.

Cue the guilt. Again. It's too much, you know? What did I do? is all I can wonder. She'll be fine. I want to get to that place where I don't worry or cry and know that she'll be fine. She's spunky as all get out and doesn't let anything stop her. My head is a jumble of all these and related thoughts. Am I doing enough? Do I insist on more frequent therapy?

Oh and I hate that my husband never openly worries over any of this stuff. Of course he's not having to worry that it's anything he did to cause their conditions.

So I'm not entirely sure why I'm starting this blog, but here it is. I'm just a mama to two sweet girls who is just trying to figure out what to do next.

*not their real names (though similar!), but perhaps a bit better than using some clever variation of "toddler" and "baby" ....