Tag Archives: agenesis of corpus callosum

Time for a 2nd act

8 Apr

So, I’ve spent the bulk of the last 2 weeks on the offensive for my daughter….researching/interviewing/praying for guidance in how to structure her middle school years as a special needs child. It is a daunting task, and one I’m just learning to navigate.

I left my ego by the wayside long ago when it came to my little one. I’ve tried to search for the best alternative therapies and to mix it into the public school model. And, while not defeated, I am certainly humbled by the idea that perhaps I need to take a step back and look at my girl with more objective eyes.

As a toddler, it was no big deal that she couldn’t ride a bike…the fact that she was behind developmentally in kindergarten really didn’t seem that big a deal when kids couldn’t write their own names or color between the lines. I bought into a false sense of cautious optimism, because I knew her determination would carry her far. And it has. She remains in the top 3 percentile for kids with her brain anomaly. I have to hold on to that fact as I push forward to a new reality.

It is quite possible that my little angel will never go to college. Or drive a car. Or navigate a map without divine intervention. She may never progress beyond the “Would you like fries with that?” level of employment…that is not pessimism, it’s a realistic view. I feel my focus shifting towards giving her practical knowledge that she can use in everyday life, instead of working towards age appropriate educational goals.

Add into it the fact that I now must help her deal with the inevitable mean spirit that seems to prevail in the middle school world, where awkward tweens lash out in mean rants that spew out from deep seated insecurities…

And I will, like so many parents like me, wake up in the middle of the night in a dead panic, wondering if there is anything else I can be doing to help my child.

But in the clear-eyed mornings, I remind myself to count my blessings. Know it could be MUCH worse, and be grateful that my daughter is here to teach me patience, exceptance, and determination every day……


On second Thought

22 Mar

The more I think about it, the more I’m thinking that my daughter should NOT take the Wechsler test per the school’s recommendations…. I fear that the test giver may be biased based on their desire to see her end up in an Alternative Learning Center setting versus mainstreaming her into the classroom.

I’ve been doing a fair amount of research, and I walk away buoyed by the knowledge that I NEVER have to sign off on an educational plan….it is up to the school to give my daughter the tools she needs to succeed in a regular classroom setting. This is a comforting thought, because I truly believe that she deserves a chance to perform, albeit below average, in a classroom with her peers….I would rather see her claw to the top of the bottom 5th percentile than give up altogether and have her be a ROCKSTAR in a full time special needs classroom.

I’m giving serious thought to hiring someone to administer the test privately, just to see if the outcome is different…..

The Joys of Swine Flu

26 Oct

It’s a bird! It’s a plane! It’s aero porcine! I mean, when pigs fly! I mean: SWINE FLU!!

Of course it has hit my youngest: my 9 year old immuno-challenged cardiac child. It had to be her. And it hit the very day she got a regular flu shot. (BTW, does anyone else find it odd that the h1n1 vaccine is only available at government free clinics, and not private practices?) I had an appt 2 weeks ago to get my little one vaccinated for h1n1, but it was canceled by my pediatrician when the vaccines didn’t arrive.

Meanwhile, the little one has had fevers as high as 105. She also has been wheezing and basically keeping me up all night. Ah, the joys of motherhood!

13 May

My youngest daughter is 8 years old with congenital brain damage. She is what is fondly referred to as “special needs”, although at first glance you might not notice. She has a condition known as Agenesis of the Corpus Callosum, which is a blog for another day. For today, just know that she doesn’t always process information the same as your average 9 year old.

Enter neighbor girl. She moved here about a year ago, and I’ve frankly never cared for her. She is always telling my daughter that she is fat and she needs to exercise.  She bosses my daughter around so much that after 15 minutes in our house, my daughter comes up to me and asks if she can send her home. She’s pushy, loud, insulting and rude…great qualities to have on a playground!!

We have, from time to time,  sent this child of God home on more than one occasion for various infractions, which usually keeps her at bay for a few weeks. She showed up again this weekend out of the blue, asking if my daughter could play. Hope springs eternal in me, so I decided to give this little darling yet another chance. Big mistake.

While Hubs and I were gardening out front, the two girls went inside to look at our new kittens. When they left to walk the girl home, my daughter was acting suspicious. When asked what she was hiding, my daughter only looked to her friend and shrugged.

“What?! She has Nothing!”

came the voice of the neighbor, followed by the all knowing smile which really should have tipped me off. But, I was engrossed in my gardening, so I let it go. I told my daughter that she could walk the girl partially home, as long as she did not cross the street, and then come right back.

A minute became ten, and then fifteen. I rushed to the girl’s home, only to find that my daughter had indeed crossed the street. I put on my best angry mom voice:

“I TOLD you not to cross the street! Now you are in BIG trouble! Get over here, NOW!”

At this point the little darling tried to back peddle, “I told her not to cross the street!”

My daughter cannot lie to save herself…her brain doesn’t work fast enough to think of a lie (lucky me!) So, when asked what she was doing across the street with before mentioned child of God, she replied “Well, she told me to steal a jar of sprinkles from the house, and we ate them and tossed the empty jar in the bushes…” She was so nonchalant about it: it was amazing.

Today it’s sprinkles, tomorrow it’s alcohol. I’m officially done with this little neighbor girl.