Anna's annual IEP meeting was scheduled for this week, as it normally is each year, but with year end stuff going on at work, the timing wasn't looking good for me. We usually push the meeting into February so that I can attend but there are already four days in that month where I will either be late or need to miss a full day of work due to appointments for myself and for Anna. These meetings are always scheduled for a time in the middle of day which means that I need to be absent from work for a full day. So anyway, we decided that because we are pros at this now, Rich would be the parental representative for this meeting. What could possibly come up?
We've known all along that there could be "side effects" such as learning difficulties related to Anna's hydrocephalus. Hydrocephalus, an accumulation of fluid in the brain, is a common occurrence in those with spina bifida. Anna has a shunt in place to keep the hydrocephalus in check but she still developed in utero with excess fluid in her brain. Thankfully, she hasn't had any issues with her shunt since it was intially placed after birth and then revised a few days later. Her hydrocephalus, just like everything else that goes along with spina bifida, has sort of become a normal part of our lives. We know the symptoms of a shunt malfunction and because she is old enough now to easily communicate those symptoms to us, we rarely give her hydrocephalus more than a passing thought. Yesterday though, a few observations of her behavior and habits were discussed during the meeting which lead to me frantically scouring the internet, becoming a hydrocephalus expert and long story short, some of what we thought were merely Anna's quirky personality traits fall into the realm of hydrocephalus side effects.
Kids with hydrocephalus process thoughts in a different manner. Many have difficulty with math. Many can see all the parts but can't put those parts together to make a whole. They may have difficulty with their fine motor skills. They may have messy handwriting. They may have problems with organizational skills. The list goes on and on. I read a few paragraphs discussing disorganization and hydrocephalus and it was as if the article had been written specifically about Anna.
Anna's a bright girl. We've been told this by her teachers and right now, she's where she should be academically for a second grader but the fear is that with each passing year, the difficulties may compound. We've always known this. In fact, it's been on my mind a lot lately as I try to hash out my Life Plan. I've been asked why I don't take a few years off from work and then find something else later. Take a break, so to speak. Financially, could we do this? Yes. But I've always known that fifth, sixth, seventh grade is going to be a whole hell of a lot harder than second grade and so here I am, continuing to work and plan for the future. Anna's doing well right now. She's holding her own but little things came to light yesterday that appear to be related to her hydrocephals - the way she organizes (or doesn't in this case), how she follows instructions, the misconception that she's being inattentive.
At the same exact time Rich was meeting with Anna's team at the school, the girls were on lunch/recess break. Anna's class and Allie's class ended up outside before Emily's so Em wasn't there when this happened but thank goodness Allie was, not only to stick up for her sister but to confirm exactly what happened. Apparently, this group of girls including Allie and Anna and Anna's friends from her class were near or passing by the garbage dumpster which happened to be giving off a dumpster-like odor. A girl in Anna's class said to Anna, "The smell must be coming from your diaper. I know you wear diapers." Allie told her that no, Anna doesn't wear diapers and it seems like it broke up from there. My first reaction was, "Why didn't you say it's your breath that smells like garbage," but of course, my kids won't say things like that. I have a smart mouth and I know it's not the way to resolve certain situations, including this one. Anna was quite upset last night and while my heart was on the verge of breaking, I cuddled with her and remained strong. And calm. I think this girl has said something to Anna before but I never had enough details to go to her teacher with it. All I could think was this ends now. And it has. It's over. The school handled it very professionally and Anna received an apology. They'll be speed bumps along the way, I'm sure, but Anna needs to know that she's better than that.
I think back to when the girls were two, three, four years old. Working was difficult because of logistics and lack of sleep and an aching heart from missing time with my kids. That all still exists right now but it has multiplied. There's always a feeling of hustle and bustle. Rushing. Me helping with homework at 8 PM. Bigger kids = bigger issues. It's not going to get any easier.