In September, Vivian had a neuropsychological evaluation. Basically, Jason and I had seen some unexpected changes in Vivian since her epilepsy diagnosis in January.
The differences were slight, except for the obvious change in energy/tiredness. She stopped reading long novels, and wasn't working on independent projects like she used to--projects that could last over a few days. Sometimes they were construction projects, sometimes painting, sometimes stories. They just seemed to vanish.
We weren't sure if it was a lull, or a real change, or if it was or was not related to epilepsy. I found out her condition qualified her for a visit to the neuropsychologist.
Vivian was evaluated over the course of two days. The eval consisted of a few questionnaires for me on her behalf, and a series of IQ/problem solving tasks. In short, Vivian is very intelligent, a good problem solver, highly motivated and enjoys being challenged. What was surprising was sometimes she misses "the big picture" type of question. While we'll never know whether or not this was always how Vivian was, or was going to be, Jason and I believe our observations of Vivian (types of books, projects, etc.) are different than they used to be. We've also seen her reading comprehension scores slide, even though she's on the higher level of scores related to her peers.
The neuropsych eval strongly hinted that this has been seen in epileptic patients. Normally this is not a side effect of medication, and was my suspicion, but rather a function of seizure effect/brain damage. Vivian's MRI shows no abnormalities. The evaluation gave us strategies to help Vivian as she grows older with things like reading comprehension, should we need them. In essence, this is a "baseline" for us, in case Vivian starts behaving differently or starts having trouble in school.
I'm glad Vivian was evaluated. I was disappointed that this was never recommended for Elena, so I asked the doctor about it. We had a good, long talk; basically, I noticed that when filling out the questionnaires for Vivian, I would have essentially recorded the opposite for Elena (self-sufficiency, social behavior, responsibilities, etc.).
She told me that currently, if a baby is born and determined to have a brain injury (as Elena was), their record is immediately flagged for a neuropsychology evaluation during her elementary school years. This can help a child who struggles with independence, personal responsibility, executive function, and social interaction--basically, all fields Elena (and many other kids) require assistance/help. It can provide strategies for her, and our family, to help achieve goals, manage expectations, and improve self-sufficiency. I wish I had known about this sooner.
I had Elena evaluated in November.
Our main question for the neuropsychologist was regarding our expectations for Elena, and if they were reasonable. They are not outrageous. She is intelligent, even though she struggles with some concepts, and is verbally talented. There is more to her stubbornness and lack of progress (in self-care) than just "being a teenager". It's a mix of "other', teenage angst, learned helplessness, and unwillingness to change (she is happy how things are, doesn't want to do more for herself--other people doing things for her suits her just fine, etc.).
The biggest message we got from the evaluation was that Elena is exhausted. Mentally and physically--the day exhausts her. She feels overwhelmed. By everything. She does not get excited about learning something new, it does not motivate her to do more with it--it just exhausts her. (She is not depressed.)
I thought that was how someone feels if the subject matter isn't interesting to them. I get that; if you don't like what's being taught at school or at home, it's a drag. To me, this would indicate nothing at school interests her--which I know isn't the case. And even though it's exhausting to her, she is doing much less than your average teenager--she has to be able to handle more, if she's ever to be a functional adult. Or functional teenager, for that matter.
The psychologist and I were a bit at odds, mostly b/c she was talking about how to encourage Elena through constant praise, very Kazdin-method type of lifestyle. I am convinced this doesn't work on a smart teenager--she can see right through shallow praise, and it backfires on us.
So, in short, we've been trying to encourage good behavior and try to be more patient. It basically just gave us more responsibilities than ever, and didn't help our home life much.
But, we eventually had a breakthrough. And that's where we are now.
Friday, December 7, 2018
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2 comments:
Hi Amy,
About exhaustion. I think what the neuropsychologist is talking about is "Neurofatique" https://www.braininjury-explanation.com/consequences/invisible-consequences/neurofatigue
I have CP and very mild Neurofatique and I know many stroke survivors who have it including a PhD science professor with a thalamic stroke and a woman with severe Neurofatique from a brain tumor that nearly crushed part of her brain. If Elena has Neurofatique her brain just doesn't have the extra "power" to stay engaged like an able bodied/non brain damaged person. Elena is not lazy, she is just trying to save her strength for things she finds more enjoyable. She does NOT need constant praise. A lot of people in the Neuropsychologist field think kids constantly have self esteem issues from disability when they may not. What Elena needs is empathy from you as her mom. You can give her empathy by teaching her whatever independent activity she needs to know in the least energy consuming way possible. Teach her in a way that gets her to understand being independent means she can control how much energy she uses. Make sure her IEP and school accommodations are NOT wasting Elena's energy. Some "modified" activities were more tiring for me than not tiring. Active brain activities like learning a new language or math will make Neurofatique set in quicker. I saw someone with Neurofatique try to teach math once and by the end of trying to teach he got so tired he was almost dizzy and felt very weak to where he looked zoned out and could not walk straight, even though he had not moved physically at all. This might be part of why Elena had so much trouble in Math. Her brain couldn't move fast enough to keep up with a fast teacher. Remember physically anybody with CP uses at least 2X as much energy because of spasticity. For example 5 steps for me equals 10 steps worth of energy. If my classmates take 10 minutes to walk to class I need 20 minutes to walk to class to function etc. My main point make everything slow and more "Elena speed" Elena might benefit from learning independent activities from another person with Cerebral Palsy and Neurofatique because a person with CP may teach it to her in a way that takes into account a lack of energy more easily and it might be less annoying to a teenager to hear the "independent" speech from someone other than mom because it doesn't feel like mom being a "nag" and a person with CP can demonstrate an activity in a way that may be more exciting to Elena because she can start picturing herself as an adult through an adult with CP.
If I remember correctly another check up you did a few years ago with Elena said she had a bit of a learning disability too right? Was this ever addressed?? Neurofatique does NOT effect intelligence at all!
Vivian may also develop Neurofatique and its possible her brain changed without actually being damaged.
I am a fully independent adult with CP. I am sitting here reading your old and new posts and daydreaming back to when I was Elena’s age. This quote “And even though it's exhausting to her, she is doing much less than your average teenager” because I completely disagree. From your past posts you have described Elena as swimming, working out, singing, biking, doing theater, traveling a lot, and that being a middle schooler she has a busy long school day and a ton of homework plus a ton of PT. At Elena’s age all I did was my school work, home work, basic chores, 2 fun activities on 2 different days to spread them out so I wouldn’t get tired, and one long day of PT/stretching. You have mentioned in some much earlier posts that Elena did not have much time to play or commute between different activities and that should have been a huge red flag much earlier on because if you were a bit squeezed for time know that Elena probably feels ten times more overwhelmed.
I also wonder if Elena is a bit of a perfectionist, perhaps she knows she is clumsy and slow and prefers an adult do something because they are faster and smoother at it. This might be what the Neuropsychologist was referring to about praising Elena because people with CP tend to become very aware of what they CAN’T do when they hit puberty because they see the CP is still there no matter how much they grow. Elena does not need constant praise to deal with this, she just needs to be taught a better less energy consuming way of doing the activity without you over correcting the activity unless you feel she is unsafe. People with Cerebral Palsy have some methods for doing things like cooking and laundry that likely look completely crazy to an able bodied person but are still safe and the most effective methods we have. I time things differently to take at least 3 times as much time as my peers so let Elena go slow and find her own way no matter how “odd” the method looks and don’t correct her to soon.
YES you should definitely expect Elena to become fully independent and have very high expectations for her academically and otherwise, but you need to teach Elena how to know when she is tired and how to describe it to you. Example: I was overloaded with math homework so I refused a leadership position in a school club so my grades would not suffer. A lot of people thought I was nuts because the club was basically all I was doing that semester but my brain could not handle one more thing.
The other comments are spot on about Neurofatique. In Cerebral Palsy because an area of brain cells is literally dead Elena has a lot less brain cells to work with, and these brain cells tend to tire more quickly. There’s only so much you can ask your brain circuits to do in a single day. Neurofatique is usually invisible to people around brain injured people because they look “fine” on the outside so people assume they are lazy or bored. Its not laziness or being bored, the brain itself is tired out. Does Elena have sensory overload? Or sensory integration disorder? Sensory overload makes people with CP very tired.
I'm ao glad you finally had a breakthrough! Please post about this breakthrough???!!!!
I’m so sorry you dad has cancer! :(
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