365 in 52 [2013] ~ Week Seventeen

Well… as good as last week was, this week wasn’t so hot. Anna was suspended from school on Thursday for an incident that happened on Wednesday. I debated on whether or not to share the details, but decided that Anna deserves to have people understand her behavior… and if you see someone agitated and acting out, perhaps you’ll think of her and offer love instead of judgement.

I also wanted to let other parents who have emotionally- and behaviorally-challenged children know they are not alone. My friend, Angela, recently wrote this post titled, “Sometimes life isn’t always rainbows and sunshine” about sharing the bad with the good and it struck a chord with me.

I really never thought a child with special needs could get suspended. Yes, perhaps ISS (in-school suspension) with other consequences, but how much do they understand about being suspended? Did Anna really understand why she couldn’t go to school on Thursday? How will this look on paper to her 6th grade teacher who will be taking over her education this fall? I understand there is an escalation of consequences, but for Anna… and kids like Anna… consistency is what really teaches them. So… the gist is that she pushed her teacher and pulled her teacher’s hair. That is why she got suspended. Last month, she actually hurt another child (not seriously) and shoved her teacher… and for that she got ISS for 2 hours with loss of recess as a consequence. Hmm.

I argued against the suspension stating that Anna would LOVE to be home with me, that would be a reward rather than a punishment. She will learn that behaving badly gets her more time with mommy. No bueno. But the principal would not be swayed mainly because they were doing state testing on Thursday and they simply had no resources at school to care for her. Oh… and they took away her 5th grade trip to Sea World too. Anna has been talking about that for a year and a half. She can only go to Sea World if we take her, keep her separated from the other kids, and can always guarantee we will be with her 1:1 the entire time. No bus trip. That does not promote integration, independence, or fun!

I’m just tired. And worried. And super duper feeling badly for my sweet Booski. For several months, Anna has been behaving strangely. She’ll be fine, happy, getting along when all of a sudden she snaps into a rage spewing anger and hurtful words. She hits, she shoves, she gives the middle finger. It’s like a demon child possesses her. If we engage with her at any sort of level that smacks of control or anger, it escalates her. Then after 30 minutes or so, she’ll weep. She’ll cry her heart out, saying she’s sorry. She doesn’t know why she says those things, she is horrified by what she has said and done. Then she sleeps.

Over and over again, this cycle.

I thought initially it might be seizure activity. I’ve been pushing her neuro to get an extended EEG but he continues to blow me off. There is a fascinating TEDTalks segment with a speaker named Aditi Shankardass whose clinical work with children with developmental delays suggest a large percentage of them are experiencing seizure activity. Anna’s psychiatrist agrees that it could be partial seizures at the onset that triggers these meltdowns but feels they are more behavioral. He was no help either, suggesting to Anna that she have 50 good days at school in a row to earn a new baby doll. Ridiculous. I don’t believe these episodes are entirely within her control. I’ve been charting her behavior. So far, they are very in tune with her menstrual cycle… about three days before up to a week during and after, she is a mess emotionally and behaviorally, having received all of the office referrals, ISSes, and the suspension during this time. We see the psych this week, the endo again in mid-May, and the neuro again in late-May. I will insist on an extended EEG starting a few days before her next cycle. There are seizures in the temporal lobe, partial seizures, triggered by menses called catamenial seizures. My gut says these are the culprit. They can cause all kinds of weird behavior.

I’ve also requested that the school re-institute her BIP (behavior intervention plan) so that they handle these episodes better. I need to write up how we handle them at home so they can train the staff on what to do. If these episodes are truly beyond her control, can you imagine how she feels?

The whole thing overwhelms me and I can’t even imagine what it’s like for Anna. The appointments, the training, the fighting, the advocacy, the upcoming transition to middle school, and just managing Anna minute to minute. It takes 100% full attention to keep her safe. She was out with my mom at a corner store last month when Anna ran away from her, then screamed at my mom “Don’t hit me!” Mom was terrified the police were going to be called and Anna would be taken away, so she had to call Curtis to come help. Thankfully they were just a few blocks away. My FIL came to visit and I would not let him take her out without me or Curtis there.

So now I have two children who have been suspended for aggressive behavior. It scares the shit out of me.

Now that I’ve completely depressed all of you too (sorry!!!), I will share some happy photos of my sweet Anna. I really only shot two days this past week, I was just too depressed. Anna got to miss school on Friday to attend the Individual Skills Soccer Competition for the Special Olympics. She earned a silver medal. I was a very happy and proud mommy… and it was a good day.

Day 116 ~ Special Olympics

Thanks for looking. I hope my sweet Booski has a much better week this week. <3

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