Brain Tumor Exec Functioning Rec

[Anonymous]

Probably a long shot but thought I would ask….

Anyone have a brain tumor kid (middle school) and find an executive functioning coach who really helped him/her? With routine brain tumor issues like memory, following multiple steps, reading comprehension…..school anxiety

[Anonymous]

Unfortunately I don’t have any useful recommendations. However, my thoughts and prayers are with you and your child.

[Anonymous]

My daughter had brain cancer as a toddler and the long term effects on her processing speed and likely having inattentive ADHD have been tough. Her working memory is also crappy.

I think you need to take a step back and not think one person can help. First, I think you need to get a handle on the anxiety. This may involve meds — don’t be scared to try them.

Second, do you have a full neuropsych? At our children’s hospital, my kid could basically get a neuropsych every year as a former brain surgery patient. Do you have the same? If so, get the full assessment and ask them to put in all the accommodations you think you need (assuming they agree with them). This will be your roadmap for your IEP/504 if you don’t already have one. This should also tell you their IQ, and you need to have realistic expectations based on IQ. I say this as a person whose other kid has profound ID. Brain tumor kid has an IQ of 110 and sees herself as someone who should get straight As. She has managed to do this by hook or by crook, which means she does a lot of “advocating” with tea herself for extra credit, etc.

Third, think through which subjects you can help your kid in versus what you need to outsource. I have outsourced math since late elementary. Mathnasium worked for elementary. We have moved to a tutor from Fusion for middle school school. She actually likes for me to help her a lot, which is exhausting. I have a new part time job as a middle school teacher essentially. We agree on what works for her. She comes home and we watch 15 minutes of TV. I then walk through every class (in order) and she tells me what she needs to do for homework and I ask EVERY DAY about upcoming tests and quizzes. I follow the parent portal to help her keep track. Straight up memorizing is really hard. I’ve made up songs, dances and cheers to help her because the way she remembers things if with TONS of context. So she can basically tell you in detail about a book she read, but can’t sum it up to save her life. This is all very kid specific. If your kid hates working with a parent, the you have to figure out what tutors you need. And maybe a coach also, but I find we do better with me coaching.

[Anonymous]

Anonymous wrote:My daughter had brain cancer as a toddler and the long term effects on her processing speed and likely having inattentive ADHD have been tough. Her working memory is also crappy.

I think you need to take a step back and not think one person can help. First, I think you need to get a handle on the anxiety. This may involve meds — don’t be scared to try them.

Second, do you have a full neuropsych? At our children’s hospital, my kid could basically get a neuropsych every year as a former brain surgery patient. Do you have the same? If so, get the full assessment and ask them to put in all the accommodations you think you need (assuming they agree with them). This will be your roadmap for your IEP/504 if you don’t already have one. This should also tell you their IQ, and you need to have realistic expectations based on IQ. I say this as a person whose other kid has profound ID. Brain tumor kid has an IQ of 110 and sees herself as someone who should get straight As. She has managed to do this by hook or by crook, which means she does a lot of “advocating” with tea herself for extra credit, etc.

Third, think through which subjects you can help your kid in versus what you need to outsource. I have outsourced math since late elementary. Mathnasium worked for elementary. We have moved to a tutor from Fusion for middle school school. She actually likes for me to help her a lot, which is exhausting. I have a new part time job as a middle school teacher essentially. We agree on what works for her. She comes home and we watch 15 minutes of TV. I then walk through every class (in order) and she tells me what she needs to do for homework and I ask EVERY DAY about upcoming tests and quizzes. I follow the parent portal to help her keep track. Straight up memorizing is really hard. I’ve made up songs, dances and cheers to help her because the way she remembers things if with TONS of context. So she can basically tell you in detail about a book she read, but can’t sum it up to save her life. This is all very kid specific. If your kid hates working with a parent, the you have to figure out what tutors you need. And maybe a coach also, but I find we do better with me coaching.

NP - Why shouldn't "brain tumor kid" think that is in reach? I know a 110 is not tippy-top IQ but still very well above average. Seems like at many schools these days "straight As" = 50% of the class, and DC falls well within that band.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My daughter had brain cancer as a toddler and the long term effects on her processing speed and likely having inattentive ADHD have been tough. Her working memory is also crappy.

I think you need to take a step back and not think one person can help. First, I think you need to get a handle on the anxiety. This may involve meds — don’t be scared to try them.

Second, do you have a full neuropsych? At our children’s hospital, my kid could basically get a neuropsych every year as a former brain surgery patient. Do you have the same? If so, get the full assessment and ask them to put in all the accommodations you think you need (assuming they agree with them). This will be your roadmap for your IEP/504 if you don’t already have one. This should also tell you their IQ, and you need to have realistic expectations based on IQ. I say this as a person whose other kid has profound ID. Brain tumor kid has an IQ of 110 and sees herself as someone who should get straight As. She has managed to do this by hook or by crook, which means she does a lot of “advocating” with tea herself for extra credit, etc.

Third, think through which subjects you can help your kid in versus what you need to outsource. I have outsourced math since late elementary. Mathnasium worked for elementary. We have moved to a tutor from Fusion for middle school school. She actually likes for me to help her a lot, which is exhausting. I have a new part time job as a middle school teacher essentially. We agree on what works for her. She comes home and we watch 15 minutes of TV. I then walk through every class (in order) and she tells me what she needs to do for homework and I ask EVERY DAY about upcoming tests and quizzes. I follow the parent portal to help her keep track. Straight up memorizing is really hard. I’ve made up songs, dances and cheers to help her because the way she remembers things if with TONS of context. So she can basically tell you in detail about a book she read, but can’t sum it up to save her life. This is all very kid specific. If your kid hates working with a parent, the you have to figure out what tutors you need. And maybe a coach also, but I find we do better with me coaching.

NP - Why shouldn't "brain tumor kid" think that is in reach? I know a 110 is not tippy-top IQ but still very well above average. Seems like at many schools these days "straight As" = 50% of the class, and DC falls well within that band.

I mean, sure. I’m proud of her for this. But her processing speed is 5th percentile. Her working memory is terrible.

She has made it through middle school by hook or by crook. But I am skeptical she can hack this through the AP/IB world she envisions herself in. If she didn’t have me to spend intense amounts of time with her on this stuff and spend a crap ton of money on tutors, she would likely make some As, some Bs and an occasional C. This kid thinks she can go to Yale. I won’t crush her spirit, but I don’t think this is happening. I will however continue my part time job learning the curriculum along with her — which is a huge pain.

My larger point to the mom of another brain tumor kid is to be realistic about where you are going to land given the full
Neuropsych details. It can give you a lot of information to help you parse things out. My other kid has an IQ of maybe 35 so I’ve had to adjust my expectations there as well.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My daughter had brain cancer as a toddler and the long term effects on her processing speed and likely having inattentive ADHD have been tough. Her working memory is also crappy.

I think you need to take a step back and not think one person can help. First, I think you need to get a handle on the anxiety. This may involve meds — don’t be scared to try them.

Second, do you have a full neuropsych? At our children’s hospital, my kid could basically get a neuropsych every year as a former brain surgery patient. Do you have the same? If so, get the full assessment and ask them to put in all the accommodations you think you need (assuming they agree with them). This will be your roadmap for your IEP/504 if you don’t already have one. This should also tell you their IQ, and you need to have realistic expectations based on IQ. I say this as a person whose other kid has profound ID. Brain tumor kid has an IQ of 110 and sees herself as someone who should get straight As. She has managed to do this by hook or by crook, which means she does a lot of “advocating” with tea herself for extra credit, etc.

Third, think through which subjects you can help your kid in versus what you need to outsource. I have outsourced math since late elementary. Mathnasium worked for elementary. We have moved to a tutor from Fusion for middle school school. She actually likes for me to help her a lot, which is exhausting. I have a new part time job as a middle school teacher essentially. We agree on what works for her. She comes home and we watch 15 minutes of TV. I then walk through every class (in order) and she tells me what she needs to do for homework and I ask EVERY DAY about upcoming tests and quizzes. I follow the parent portal to help her keep track. Straight up memorizing is really hard. I’ve made up songs, dances and cheers to help her because the way she remembers things if with TONS of context. So she can basically tell you in detail about a book she read, but can’t sum it up to save her life. This is all very kid specific. If your kid hates working with a parent, the you have to figure out what tutors you need. And maybe a coach also, but I find we do better with me coaching.

NP - Why shouldn't "brain tumor kid" think that is in reach? I know a 110 is not tippy-top IQ but still very well above average. Seems like at many schools these days "straight As" = 50% of the class, and DC falls well within that band.

I mean, sure. I’m proud of her for this. But her processing speed is 5th percentile. Her working memory is terrible.

She has made it through middle school by hook or by crook. But I am skeptical she can hack this through the AP/IB world she envisions herself in. If she didn’t have me to spend intense amounts of time with her on this stuff and spend a crap ton of money on tutors, she would likely make some As, some Bs and an occasional C. This kid thinks she can go to Yale. I won’t crush her spirit, but I don’t think this is happening. I will however continue my part time job learning the curriculum along with her — which is a huge pain.

My larger point to the mom of another brain tumor kid is to be realistic about where you are going to land given the full
Neuropsych details. It can give you a lot of information to help you parse things out. My other kid has an IQ of maybe 35 so I’ve had to adjust my expectations there as well.

PP here --Thanks for sharing your story, I have a DS (7th) with a similar IQ/neuropsych profile to your daughter (including very low processing speed). Did not have a brain tumor but an underlying condition that impacts learning in some standard ways but also unknown. He works hard, wants to go to college, has professional motivation but does not have the huge internal motivation of actively trying to be an A student and I think that counts for so much so I was mainly writing that I would not view that as a limiting factor for another kid. Won't necessarily = Yale (but same applies for 97% of other students) but can take her far and is a great life skill). I need to work with my son in a similar fashion to you (but often with some resistance).

[Anonymous]

Anecdotally I have heard that some psychiatrists prescribe a stimulant for cognitive symptoms of brain injury so maybe it could be similar for a brain tumor. It’s not ADHD per se (although would likely be coded that way) but stimulants may help.

[Anonymous]

I think I would see this as an “activities of daily living” issue and see if there is an actual licensed health professional (maybe an OT, ABA, or psychologist) who can work with her. She needs to learn workarounds for all sorts of reasons for independent living, not just school.

[Anonymous]

OP here. Thank you for the detailed response. Yes, a lot of what you say as the parent of a kid who had brain cancer sounds familiar. My brain tumor kid has poor/slow processing, bad long term memory, and recall issues. He really wants to do well but, as he gets older, he realizes how much harder he has to work in the academic setting and he gets discouraged ...and needs outside motivation/support to get back in there. This individualized support is just not always practical/feasible in the classroom and at home. He just had a neuro-psych eval and looks like he is average intellectually (I don't see an IQ number). Yes, he has been in mathnasium since second grade and tutors here and there. He is actually really good at computing numbers in his head and enjoys math...he reads well...it's just the reading comprehension starting to kill us... i don't know...and his tumor messes with his metabolism so he gains weight easily and so he is in a lot of physical activity in the evenings... i don't know...they tell me to get a therapist and a tutor and exercise and exec functioning support and i'm just trying to prioritize and try to keep this tumor from taking more from him...and me

[Anonymous]

Anonymous wrote:OP here. Thank you for the detailed response. Yes, a lot of what you say as the parent of a kid who had brain cancer sounds familiar. My brain tumor kid has poor/slow processing, bad long term memory, and recall issues. He really wants to do well but, as he gets older, he realizes how much harder he has to work in the academic setting and he gets discouraged ...and needs outside motivation/support to get back in there. This individualized support is just not always practical/feasible in the classroom and at home. He just had a neuro-psych eval and looks like he is average intellectually (I don't see an IQ number). Yes, he has been in mathnasium since second grade and tutors here and there. He is actually really good at computing numbers in his head and enjoys math...he reads well...it's just the reading comprehension starting to kill us... i don't know...and his tumor messes with his metabolism so he gains weight easily and so he is in a lot of physical activity in the evenings... i don't know...they tell me to get a therapist and a tutor and exercise and exec functioning support and i'm just trying to prioritize and try to keep this tumor from taking more from him...and me

Brain cancer mom again. So my other kid actually has profound ID. And I will tell you my biggest learning from both my kids is that you just cannot optimize everything. Doctors and therapists will give you a laundry lists of things you “must do” and really, you can’t. So take a breath, look at your time and finances, and what your other kids need. Then, you make a plan.

I will say this. My daughter has done much better with a 1:1 tutor from fusion for math than she did at mathnasium. The 3:1 ratio there just wasn’t working as she hit middle school. It might also help if you have a consistent male tutor since you have a son — whatever the subject.

I also understand the self worth thing. Middle
School was tough for my kid as she realized her other straight A friends were so much faster and everything came easier for them. She pushed through it and now does homework a lot with friends (at Starbucks, etc). I don’t know that boys socialize like this, but it is really helpful for her. She has one really gifted friend so that is her favorite person to study math with. But, she also likes to study with her friend with high functioning autism where my kid actually can help her with getting organized and staying on task. It gives my kid confidence when she can help someone else out. And both of them will ask me to help study for social studies and ELA. Any chance your kid has a studious friend that would want to come over and eat junk while they do homework together? I try to have fun food the kids like when they do this at our house.

Overall, I just had to be really frank but supportive “yep, it totally sucks you are missing a chunk of your brain which makes things take longer, but you are smart, work hard and care a lot. You also have better problem solving skills than some of the gifted kids.” Don’t try to gaslight your kid (not that I think you are).

For reading comprehension, I read to my kid a lot. I read out loud both assignment stuff and a sort chick lit murder mystery book at bedtime. We stop and try to give her time to catch up with the processing in her brain and I might summarize a few paragraphs with her after reading them. The bedtime stuff is a pain because it is 45 minutes at night when I’m tired myself. But, I do think it helps even when it is relatively junky reading - summarizing what happened and talking about new vocab words is always helpful. Is there anything he would like you to read to him?

Anyway, just a few ideas. But really, this is a marathon, not a sprint. And you cannot do it all.

[Anonymous]

Yeah, I definitely can’t do everything they recommend and my kid doesn’t want to. I just need to put more support in place since academics are getting harder. He also still has MRIs and all the clinic appointments every three months (since 2016) and it is just a lot. Yes, he knows everything since doctors talk in front of him and I let him know what’s going on and, yes, I tell him that everyone has something to deal when and work on and this is his… i can’t spend that much time in the evening reading with him between other kid club soccer and everything else…but we’ll figure it out

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. Thank you for the detailed response. Yes, a lot of what you say as the parent of a kid who had brain cancer sounds familiar. My brain tumor kid has poor/slow processing, bad long term memory, and recall issues. He really wants to do well but, as he gets older, he realizes how much harder he has to work in the academic setting and he gets discouraged ...and needs outside motivation/support to get back in there. This individualized support is just not always practical/feasible in the classroom and at home. He just had a neuro-psych eval and looks like he is average intellectually (I don't see an IQ number). Yes, he has been in mathnasium since second grade and tutors here and there. He is actually really good at computing numbers in his head and enjoys math...he reads well...it's just the reading comprehension starting to kill us... i don't know...and his tumor messes with his metabolism so he gains weight easily and so he is in a lot of physical activity in the evenings... i don't know...they tell me to get a therapist and a tutor and exercise and exec functioning support and i'm just trying to prioritize and try to keep this tumor from taking more from him...and me

Brain cancer mom again. So my other kid actually has profound ID. And I will tell you my biggest learning from both my kids is that you just cannot optimize everything. Doctors and therapists will give you a laundry lists of things you “must do” and really, you can’t. So take a breath, look at your time and finances, and what your other kids need. Then, you make a plan.

I will say this. My daughter has done much better with a 1:1 tutor from fusion for math than she did at mathnasium. The 3:1 ratio there just wasn’t working as she hit middle school. It might also help if you have a consistent male tutor since you have a son — whatever the subject.

I also understand the self worth thing. Middle
School was tough for my kid as she realized her other straight A friends were so much faster and everything came easier for them. She pushed through it and now does homework a lot with friends (at Starbucks, etc). I don’t know that boys socialize like this, but it is really helpful for her. She has one really gifted friend so that is her favorite person to study math with. But, she also likes to study with her friend with high functioning autism where my kid actually can help her with getting organized and staying on task. It gives my kid confidence when she can help someone else out. And both of them will ask me to help study for social studies and ELA. Any chance your kid has a studious friend that would want to come over and eat junk while they do homework together? I try to have fun food the kids like when they do this at our house.

Overall, I just had to be really frank but supportive “yep, it totally sucks you are missing a chunk of your brain which makes things take longer, but you are smart, work hard and care a lot. You also have better problem solving skills than some of the gifted kids.” Don’t try to gaslight your kid (not that I think you are).

For reading comprehension, I read to my kid a lot. I read out loud both assignment stuff and a sort chick lit murder mystery book at bedtime. We stop and try to give her time to catch up with the processing in her brain and I might summarize a few paragraphs with her after reading them. The bedtime stuff is a pain because it is 45 minutes at night when I’m tired myself. But, I do think it helps even when it is relatively junky reading - summarizing what happened and talking about new vocab words is always helpful. Is there anything he would like you to read to him?

Anyway, just a few ideas. But really, this is a marathon, not a sprint. And you cannot do it all.

You sound like a wonderful mom and I'm so glad your kid is okay.

[Anonymous]

You are a wonderful mother and it’s so unfair what you’re all going through. I have a contact for a EF coach that has a great reputation and has been recommended by many. It might be worth reaching out to them. I don’t think it’s appropriate to post their information here but feel free to shoot me and email & I’ll send it to you. [e-mail] Good luck and stay strong.