When my daughter had her craniotomy, I was initially worried about changes she might experience. Who would she be when she woke up? Depending on the part of the brain that is affected, some children have trouble walking and talking. Some experience personality changes or mood swings.
In her case, she was able to walk and talk after surgery. She was a little weak at first, but was able to walk around the block within a week. She was able to remember things and her personality came back. All of those were a huge relief. But, in the three months since surgery, I have noticed some changes, particularly to her executive functioning skills and concentration. I am thinking about these things because I will need to work with her school to create a 504 plan for her. We also have neuro-psych testing at the end of the month to make sure she has appropriate accommodations. So what have I noticed?
Before surgery, she would get herself up for school, get dressed, and make breakfast before the rest of us got out of bed. Now, she can still do those things, but it takes way longer. She gets distracted and forgets what she is doing when she walks into a room. She has to be reminded of tasks frequently. She has trouble remembering steps to tasks that she's done many times before.
When she was in kindergarten, I used to sit on her bed in the morning and constantly remind her what she needed to do next so that she could make it to the bus on time. Then, in first and second grade, she had a list she would use to stay on task, but could manage her morning routine herself. This year, we may have to return to the lists and the step-by-step guidance.
My daughter has never been the kind of kid who can eat and watch TV at the same time. She gets sucked into shows and cannot multitask. She is still the same, but a little more extreme. Now, she cannot eat and listen to conversations around the table. She starts listening to what everyone is saying rather than eating. At dinner, everyone else is finished and she has only taken 2 bites, despite our constant nagging to eat, eat! At school, students have 10 minutes of silent lunch to eat before they can talk. This might be sufficient for her to eat something, but I'm not sure it will be enough.
When she was in kindergarten, I asked her teacher about testing for ADD. At gymnastics that year, we noticed that she was distracted by all the other kids there and was not able to remember routines like the other kids. Her teacher said not to worry about it until second grade because some of those things are age appropriate, and she might grow out of it. We chalked it up to her being extroverted and didn't worry about it. She was excelling in school, admitted to Composers in second grade, and then AIG in third grade. She made friends and was doing well.
Now, when I look at a list of executive dysfunction symptoms, she checks them all.
- difficulty with organization (forgetting items)
- problems planning an initiating tasks (needing prompting to begin projects)
- challenges with focus (easily distracted)
- trouble with working memory (forgetting instructions or multi-step directions)
- difficulty with emotional regulation (strong reactions to things outside of her control or expectations)
- challenges with social interactions (understanding cues and following conversations)
Some of these things are just things kids do because their brains are still developing. I have seen kids who struggle with these way more than my daughter. But, she did not struggle with these things before to the extent that she does now.
The hardest one for me to witness is the last one - challenges with social interactions. Its hard to see her being awkward or going along with something because she doesn't want to say she doesn't understand. In general, when she has had friends over, I can tell that she doesn't always follow what is going on and is a bit awkward talking. She has developed a stutter like she can't find the words that go next, so she repeats herself a lot. She says, "what?" and "got it" a lot when she is trying to follow conversations. And who knows, maybe she would still have these issues regardless because 9-year-olds are weird and awkward. But, I do think it is exacerbated by effects from her brain surgery. Her friends have been pretty patient though and no one, to my knowledge, has pointed these things out. They might not even notice or care themselves.
Then, last weekend, we went to a birthday party for a friend's daughter, and it wasn't great. While my daughter and the birthday girl don't go to the same school, they have done gymnastics and soccer together, and have been friends since preschool. At the party, my daughter knew the birthday girl and another girl, and that was it. Normally, it isn't an issue, and she will just play with whoever is there, but, they are entering 4th grade this year, and I guess that is when kids really start forming friend groups. So, at the party, my daughter, who is not really part of the friend group, was left out and ignored. No one was being mean to her, but no one was inviting her to join them either.
It was hard to watch and brought up a lot of my own issues about being left out. I know that figuring out who your friends are and aren't is just part of growing up, but its still difficult to witness your kid going through it. And for me, it's compounded by all of the other emotions I have about my daughter's situation. She's been through so much in the last few months, and I'm really hoping that she can maintain her friendships as we wade into whatever the future holds for us.
Of course, finding and maintaining supportive friendships is really hard as an adult, much less for 9-year-olds, who can be self-centered and oblivious about what other people are feeling. At the party, I watched as the two girls my daughter knew tried to plan a sleep over with my daughter sitting right next to them. My daughter excitedly said "Sleep over?!" and one of the girls responded, "I'm just talking to her right now." I had to go to the bathroom to compose myself, and then we left early.
That night when I tucked my daughter into bed, I struggled with how to bring it up. I don't want my interpretations or feelings to influence her, but I also want her to know that she shouldn't accept that kind of behavior from a friend. While she doesn't have to be invited to everything, it still isn't cool to have someone plan an activity you aren't invited to right in front of you. I told my daughter that what they did wasn't nice, and that if she ever feels uncomfortable anywhere or like she is not having fun, that we can just leave. She cried. I cried. And the next day, I invited one of her good friends over to play, and they got along great.
A Song About Friendship
Huntrix, "What it Sounds Like"
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