Thursday, January 22, 2015

Yeah, well, maybe it's your breath that smells like garbage.

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.

16 comments:

Anonymous said...

It does get harder, much harder. I have children in grades 9, 7, 5, and 4. I am busy everyday from 3pm (when I get home from work) till 10pm+, when at least two are still up doing homework. The hardest thing is organizing everyone, making sure the homework is done and done well, the papers are signed, the money paid, the sport driven to and back, the injury attended to, the laundry ready for the next day, the project supplies purchased, etc. The stakes are much higher now. You're doing a great job! I'm from MA as well. The academic pressure on the children in this high-stakes state is real and parenting has become a competitive sport.

Anonymous said...

Poor Anna. Comments like that must be so hard for her - and her sisters - to hear. She is so lucky to have such strong support in her family and especially her sisters. I have learned so much about spina bifida from your blog and it's amazing how it really does impact all areas of Anna's life. She, and your other girls, are going to be such strong and accepting women.

lesley said...

You do a great job mama. I love reading your blog and you are right-the issues will be bigger come 7th and 8th grade.

Caroline said...

I know you're doing the right thing by being calm and setting a good example for Anna by rising above it, but my first reaction is to call that little girl evil and horrible and other not so nice words. :) Some children just don't get it, what kind of pain they can cause. I'm sure your girls are scores ahead of other kids on the empathy front, not only because of your obviously wonderful and thoughtful parenting, but because of their unique bonds with each other.

Go you! Go Anna!

Anonymous said...

Girls can be so evil at times. And the sad thing is, it gets worse. I would be reacting just like you.

JEN said...

Her sister have her back. What a blessing!

Anonymous said...

My son has spina bifida as well and is in diapers. He is in first grade. As far as I know the diaper issue has not come up at school. I have often wondered if it is best to educate the other kids on why he has to be in diapers. Some of our neighborhood kids know and we have just been honest and explained. They have never even given it a second thought. I don't want him to be ashamed of being in them. It is so hard to know what the right way to handle it is!

Lauren M said...

I ache for you and your daughters, I understand the situation that you are in. I think I've commented on here before about this but my little sister was diagnosed with autism just a few months before her 5th birthday. While autism and hydrocephalus are not the same thing, there are definitely similarities. My sister Erica has brain inflammation as well as permenant brain damage, she is 16 and in highschool now, but every year she got older it became more and more apparent how far behind she was from the 'typical' kids. It was so hard and still is so hard to accept the fact that she will most likely be at a 7 year old level for the rest of her life and will never catch up to her peers, however, it is what it is and I think my family in coming to peace with it. Erica has an amazing support group at school, both with her peers and the 'typical' peers! She got asked to her first sleepover last year, got asked out to homecoming this year! She goes to the movies and hangs out at the mall with her friends, I think she has more of a social life than I did in highschool! I pray that Anna continues to fly past any limit that is put on her, while I've never met her I can tell how special and strong she is, as well as her sisters. There may be hard roads ahead but I promise it is all worth it in the end, no matter the outcome
Love,
Lauren

Katie said...

It's great that Anna has sister's around who have her back. It probably feels less isolating knowing Allie and Emily support her and are willing to stick up for her- she always has at least two people on her side.

Also, kids are the worst. I know they act horribly because they haven't finished developing their social skills/maturity level but that girl was just malicious. She probably has her own issues she's working out and decided to pick on Anna to make herself feel better. Ugh.

ChloeElyse said...

Have you ever considered homeschooling Anna?

Sarah said...

Thank you all for your positive comments.

Lauren - I always tear up when you leave a comment. Your sister sounds amazing and is so lucky to have such a great family and great friends.

As for homeschooling - No. I'm not a teacher. The schools in Mass. are the highest rated in the country and I would not want to deny her that education and support. Her teachers have been amazing thus far.

Anon with the son with SB - it is hard. Some of her friends know that she has SB and they don't care b/c it doesn't matter.

Anonymous said...

Curious - does she wear regular diaper/depend types?
Have you tried the GoodNite Tru Fits, Super Undies, etc?
If I saw the GoodNites, I wouldn't know the difference - but maybe those won't work for her, I'm not sure what her exact needs are!

Anonymous said...

So sorry Anna had to deal with the horrible comment made by her classmate. It really upsets me to read this entry on many levels. Love you Anna! Grammy

Leslie said...

It DOES break your heart! I'm so sorry that happened to Anna. My daughter has Apraxia and doesn't speak like other children. She's pretty, smart, and driven, but some people don't see past her speech. A few weeks ago, a girl on her cheer team got in her face and yelled, "SAY R!" over and over. I told my daughter to tell her, "Bite me, is that clear enough?", but she is a much better person than me. She told me it's better to be nice. I'm glad she doesn't take after her mom. :)

Anonymous said...

My daughter does not have spina bifida but, do to a traumatic birth, faced almost the same learning problems Anna is starting to have. It was hard,and we even ended up holding her back in 5th grade because coping with all the changes was just overwhelming to her. I'm happy to say that, with the help of the child study team, she went on to become a top student in high school and is now a special ed teacher. All my tears and sleepless nights were worth it. She struggled but succeded and we are all better people for it.

erniebufflo.com said...

Oh my heart. I know things like diapers comments are in our future, but I dread it. Claire's only almost-three, but she wants to wear undies like her sister, and it's just another thing where SB is rearing its head in a way it doesn't usually. I'm glad you post these updates. As always, having SB parents a few years down the road is helpful and comforting.