Author Topic: Kind of an obnoxious brag  (Read 2768 times)

CindyBS

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Kind of an obnoxious brag
« on: September 10, 2017, 02:16:44 PM »
It has been a very rough year for my family. 

My oldest son, age 14, is extremely intelligent, but also has a learning disability in writing, Asperger's Syndrome and Generalized Anxiety Disorder (very common co-diagnosis with Asperger's).  He always struggled in school, despite testing off the charts in terms of aptitude.  We've had good and bad teachers, years that went well and not so well, but school is not really set up for this type of kid.  Seventh grade ('15-"16 school year) was particularly bad.  Even though he reads 5 grades levels above his age, he still barely passed Language Arts. 

Then our world fell apart in the summer of 2016 when he was diagnosed with an aggressive subtype of Leukemia.  He went through 9 months of horrific chemo, 1 brutal infection after another.  By March it was clear the chemo was not working as hoped and we decided to do a bone marrow transplant.  He had his transplant in June.   All the time he was not able to attend school and the district gave us the most wonderful home instructor, who totally "got him" and his varying abilities.  He had 100% individualized instruction and she really worked on his learning disability in writing.  She is also a cancer survivor herself, so she was so understanding about the cancer end of it all. 

So many victories lately!

1) We are +93 days from his transplant and he is doing really really well - no signs of cancer.

2) He is still on home instruction b/c he is too immunocompromised to go to school, but he is in classes and gets work at home. He is now in 9th grade. For the first time ever - He is in ALL ADVANCED CLASSES!!!  Including an AP class.  On his AP History test he just got an 85%!!  That is with NO help from an adult with the writing and not having attended a single day of class.  He is holding his own!!

3)  I had to stop working to take care of him so our income went down at the same time many of our expenses went up.  OUR NW INCREASED BY MORE THAN $100K SINCE HIS DIAGNOSIS!!!!  Most of that was due to a booming housing market and the value of our house went up a lot in one year helped by the stock market increases. 

The obnoxious part is that I can brag incessently about #1 and get support.  I am finding bragging about #2 doesn't go over as well - especially to parents of healthy kids who cannot achieve that.  #3 - no way I would say that to anyone IRL. 

Thanks for letting me brag!

lexde

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Re: Kind of an obnoxious brag
« Reply #1 on: September 10, 2017, 02:26:44 PM »
What a year. Honestly, congratulations on all fronts. You deserve it. I can't imagine how scary and difficult everything must have been for you. And I'm so happy to hear your son is doing so well in class! You should be able to brag about it -- no doubt he's been working hard, too.


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SwordGuy

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Re: Kind of an obnoxious brag
« Reply #2 on: September 10, 2017, 03:00:04 PM »
Bravo to you, your kid, and the new teacher!

jooniFLORisploo

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Re: Kind of an obnoxious brag
« Reply #3 on: September 10, 2017, 03:00:31 PM »
All freakin' fantastic!!!!!!!

Gosh, nothing obnoxious in there at all. Big celebrations, for big reasons :))))

What a breath of fresh air to hear such news, too!

marty998

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Re: Kind of an obnoxious brag
« Reply #4 on: September 10, 2017, 03:19:07 PM »
Congrats - great lessons in resilience there.

lizzzi

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Re: Kind of an obnoxious brag
« Reply #5 on: September 10, 2017, 03:21:53 PM »
Congratulations--a big thumbs up!

lhamo

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Re: Kind of an obnoxious brag
« Reply #6 on: September 10, 2017, 04:00:21 PM »
Very happy for you on all fronts, but particularly #1 -- if you don't have your health you/he can't enjoy any of the other stuff.

Do you think you can keep him in a homeschool/unschool environment once he is not immunocompromised?   Some kids just really learn better OUTSIDE a traditional school setting, and it sounds like he is one.  Stanford has an online high school program for gifted kids that you might want to look at --  I knew someone at the US Embassy in Beijing whose kid was using it who was very happy with it, and my brother/SIL know some people who are using it.  It is not particularly cheap (I recall it was $16-18k a few years ago), but they may have scholarships.
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maizeman

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Re: Kind of an obnoxious brag
« Reply #7 on: September 10, 2017, 06:13:14 PM »
Congratulations on all three!

Regarding #2, in my experience, schools can be pure hell for kids on either extreme end of the bell curve. Sounds like your son was on both ends of the distribution at once, so I'm thrilled to hear that once he got away logistics of the classroom he's been able to excel at the actual learning-stuff bits.
« Last Edit: September 10, 2017, 06:35:11 PM by maizeman »
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former player

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Re: Kind of an obnoxious brag
« Reply #8 on: September 10, 2017, 06:30:55 PM »
These forums are great at handing out the facepunches but they are also about the only place where you will be heartily congratulated on all three achievements without anyone thinking anything the worse about any of them.

Congratulations.  May your hard work and good fortune long continue.
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solon

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Re: Kind of an obnoxious brag
« Reply #9 on: September 10, 2017, 06:36:35 PM »
For some strange reason while reading this, my heart swelled with pride and my eyes teared up. And I don't even know you. You've been through so much, and achieved so much - you should be very proud.

Juslookin

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Re: Kind of an obnoxious brag
« Reply #10 on: September 10, 2017, 07:30:30 PM »
I agree with everyone. I don't think you're obnoxious bragging at all. As a parent of teenagers I applaud you and your strong, courageous son. May he use the strength from his recent victories to help him win his battle. You brag all you want!

SlowMustachian

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Re: Kind of an obnoxious brag
« Reply #11 on: September 10, 2017, 07:46:33 PM »
What a story.  Thank you for sharing!!

nancy33

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Re: Kind of an obnoxious brag
« Reply #12 on: September 10, 2017, 10:43:39 PM »
Nothing wrong with bragging about your kid! congrata to him for all he has overcome and I hope life gets easier for him from here on out.

Secretly Saving

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Re: Kind of an obnoxious brag
« Reply #13 on: September 11, 2017, 03:45:29 AM »
Yippee!  That's terrific on all fronts.  Congratulations!

mustachepungoeshere

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Re: Kind of an obnoxious brag
« Reply #14 on: September 11, 2017, 04:23:49 AM »
What an amazing update!

Here's hoping that, after all you've been through, universe keeps smiling on you and your family.

CindyBS

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Re: Kind of an obnoxious brag
« Reply #15 on: September 11, 2017, 06:02:49 AM »
Thanks so much everyone!

As far as this:

Very happy for you on all fronts, but particularly #1 -- if you don't have your health you/he can't enjoy any of the other stuff.

Do you think you can keep him in a homeschool/unschool environment once he is not immunocompromised?   Some kids just really learn better OUTSIDE a traditional school setting, and it sounds like he is one.  Stanford has an online high school program for gifted kids that you might want to look at --  I knew someone at the US Embassy in Beijing whose kid was using it who was very happy with it, and my brother/SIL know some people who are using it.  It is not particularly cheap (I recall it was $16-18k a few years ago), but they may have scholarships.

While I think it is better for him scholastically to get the home instruction, it is absolutely terrible for his Autism.  His ability to cope with the outside world is very diminished since he is not out at school interacting with people and having to do things like cope with sensory challenges, things that make him anxious, etc.  Not only that he wants to do things like join the cross country team, go to game club, etc. - which are not possible at home.  I also feel one of the roles of school is to prepare people for life and in the work force he will have to deal with things like groups of people, sensory problems, etc.   

Thanks for the suggestion, though.  I'm sure some kids do great with that system.

BAM

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Re: Kind of an obnoxious brag
« Reply #16 on: September 11, 2017, 07:04:10 AM »
Congrats on all the achievements!! You're not obnoxiously bragging at all. Those are all such huge accomplishments. You and your child both deserve a pat on the back!

A thought about the home instruction: there might be a middle ground that will work well for him. Most states allow homeschooled kids to participate in extra curricular activities or even to take a class or two at the school while not attending full time. You might want to consider having him home for his main instruction and at school for a few electives and extra curriculars. Could be the best of both worlds.

jooniFLORisploo

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Re: Kind of an obnoxious brag
« Reply #17 on: September 11, 2017, 10:58:22 AM »
Quote
A thought about the home instruction: there might be a middle ground that will work well for him. Most states allow homeschooled kids to participate in extra curricular activities or even to take a class or two at the school while not attending full time. You might want to consider having him home for his main instruction and at school for a few electives and extra curriculars. Could be the best of both worlds.

+1.

Your child is currently in an exceptional circumstance, in which he actually needs to be physically isolated, but most homeschooled and unschooled kids have ridiculous amounts of social, sensory, group, etc, experiences via shared play and field trips, plus shared classes in art, gym, tech, science, etc. This is a situation in which lots of kids really flourish.

acroy

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Re: Kind of an obnoxious brag
« Reply #18 on: September 11, 2017, 11:45:30 AM »
WOW that's a lot of winning!
Congratulations & prayers for your son & fam !
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Livingthedream55

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Re: Kind of an obnoxious brag
« Reply #19 on: September 11, 2017, 01:50:19 PM »
All freakin' fantastic!!!!!!!

Gosh, nothing obnoxious in there at all. Big celebrations, for big reasons :))))

What a breath of fresh air to hear such news, too!

+1



Giro

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Re: Kind of an obnoxious brag
« Reply #20 on: September 11, 2017, 02:33:10 PM »
I love this post.  Thank you so much for sharing.  Congrats to your family. 

Bateaux

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Re: Kind of an obnoxious brag
« Reply #21 on: September 12, 2017, 02:18:38 AM »
Cindy, we've been there and are there.  Our son, at 14 AML Leukemia, chemo, BMT. This spring he graduated college.  Lot's of very hard days.  Our lives came crashing down, my wife had to quit work for two years.  It was 2008 and the market was soon to crash as well.  I kept my job and cared for our youngest son while my wife lived in another state trying to help save the oldest.  I lived on the highway burning that over 4 dollar a gallon gas to get myself and our youngest together with mom and oldest son.  Friends and family helped me take care of the youngest son.  It's tough.  He made it while so many didn't, nothing we did right and nothing they did wrong.  His prognosis was worse than many who didn't make it and he beat the odds.  Financially we were pretty frugal, once this happened we really shut down all unnecessary spending.  Once everybody came home my wife went back to work, but the spending never really ramped up.   We actually ramped up savings more as income returned to normal.  Unfortunately, it wasn't that way for everyone.   Many families we're in no financial shape to fight cancer.  We watched them lose jobs, homes, cars and marriages due to financial reasons.  My wife didn't set idle those two years, she did then and does now raise money for cancer research hospitals.  It's in the hundreds of thousands of dollars now.  Personally we're now millionaires and have no debt.  We're still working till he turns at least 26 to keep his medical insurance coverage.   Without the ACA I'm afraid we'd be in a troubling situation.   In 2019 he turns 26 and I worry daily about how we're going to get him health insurance if we lose the ACA.  Most Mustacians would be early retired with our NW of two million dollars.  We just can't, we have to be the fall back plan and safety net for him.  Our net worth is growing at about $500 a day and we don't spend nearly that much, what Mustacian does?  I don't really care.   Whatever we don't use in this life will be donated to fight the beast of cancer.  Good luck.  We know it's rough, you can brag a little.
« Last Edit: September 12, 2017, 02:22:55 AM by Bateaux »
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CindyBS

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Re: Kind of an obnoxious brag
« Reply #22 on: September 12, 2017, 04:10:52 PM »
Cindy, we've been there and are there.  Our son, at 14 AML Leukemia, chemo, BMT. This spring he graduated college.  Lot's of very hard days.  Our lives came crashing down, my wife had to quit work for two years.  It was 2008 and the market was soon to crash as well.  I kept my job and cared for our youngest son while my wife lived in another state trying to help save the oldest.  I lived on the highway burning that over 4 dollar a gallon gas to get myself and our youngest together with mom and oldest son.  Friends and family helped me take care of the youngest son.  It's tough.  He made it while so many didn't, nothing we did right and nothing they did wrong.  His prognosis was worse than many who didn't make it and he beat the odds.  Financially we were pretty frugal, once this happened we really shut down all unnecessary spending.  Once everybody came home my wife went back to work, but the spending never really ramped up.   We actually ramped up savings more as income returned to normal.  Unfortunately, it wasn't that way for everyone.   Many families we're in no financial shape to fight cancer.  We watched them lose jobs, homes, cars and marriages due to financial reasons.  My wife didn't set idle those two years, she did then and does now raise money for cancer research hospitals.  It's in the hundreds of thousands of dollars now.  Personally we're now millionaires and have no debt.  We're still working till he turns at least 26 to keep his medical insurance coverage.   Without the ACA I'm afraid we'd be in a troubling situation.   In 2019 he turns 26 and I worry daily about how we're going to get him health insurance if we lose the ACA.  Most Mustacians would be early retired with our NW of two million dollars.  We just can't, we have to be the fall back plan and safety net for him.  Our net worth is growing at about $500 a day and we don't spend nearly that much, what Mustacian does?  I don't really care.   Whatever we don't use in this life will be donated to fight the beast of cancer.  Good luck.  We know it's rough, you can brag a little.

Thanks for your post - it means a lot from someone who really "gets it".   I am in an online support group and while it the support is very much needed, watching others lose the fight is like a punch in the gut - especially when the child is your kid's age or has the same diagnosis.   Not a week goes by without a post that says some version of "my son/daughter died today".   

The ACA thing is terrifying to me - I wish some of these people who are so opposed to it would spend one day with a family in the Pediatric ICU and talk to them about what losing protections for their child would really mean.

One thing about my son is that he will most likely go into engineering.  Part of picking possible degrees, classes to take, etc. for the rest of high school and college will be choosing a route that will qualify him for a higher qualified worker visa to a country that has a more reasonable policy with health care.  Then when lawmakers decide to dick around with pre-existing conditions, lifetime caps and the like he has the option of leaving the country.  Basically we are going to try to set him up with a lifeline so he can be a health insurance refugee if needed.  After everything these kids go through, it is truly tragic what it has come to for our survivors. 

PS.  Today we got results of a blood test.  100% Chimerism.  No detectable cancer (his specific type they can go to 1 in 1 million cells)  :-)

CindyBS

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Re: Kind of an obnoxious brag
« Reply #23 on: September 12, 2017, 04:12:00 PM »
Forgot to mention he has (can I say had?) Philadelphia Chromosome Positive ALL.

FireHiker

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Re: Kind of an obnoxious brag
« Reply #24 on: September 12, 2017, 04:28:29 PM »
Cheering for all the good news in your post!

mustachepungoeshere

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Re: Kind of an obnoxious brag
« Reply #25 on: September 12, 2017, 05:45:56 PM »
Cindy, we've been there and are there.  Our son, at 14 AML Leukemia, chemo, BMT. This spring he graduated college.  Lot's of very hard days.  Our lives came crashing down, my wife had to quit work for two years.  It was 2008 and the market was soon to crash as well.  I kept my job and cared for our youngest son while my wife lived in another state trying to help save the oldest.  I lived on the highway burning that over 4 dollar a gallon gas to get myself and our youngest together with mom and oldest son.  Friends and family helped me take care of the youngest son.  It's tough.  He made it while so many didn't, nothing we did right and nothing they did wrong.  His prognosis was worse than many who didn't make it and he beat the odds.  Financially we were pretty frugal, once this happened we really shut down all unnecessary spending.  Once everybody came home my wife went back to work, but the spending never really ramped up.   We actually ramped up savings more as income returned to normal.  Unfortunately, it wasn't that way for everyone.   Many families we're in no financial shape to fight cancer.  We watched them lose jobs, homes, cars and marriages due to financial reasons.  My wife didn't set idle those two years, she did then and does now raise money for cancer research hospitals.  It's in the hundreds of thousands of dollars now.  Personally we're now millionaires and have no debt.  We're still working till he turns at least 26 to keep his medical insurance coverage.   Without the ACA I'm afraid we'd be in a troubling situation.   In 2019 he turns 26 and I worry daily about how we're going to get him health insurance if we lose the ACA.  Most Mustacians would be early retired with our NW of two million dollars.  We just can't, we have to be the fall back plan and safety net for him.  Our net worth is growing at about $500 a day and we don't spend nearly that much, what Mustacian does?  I don't really care.   Whatever we don't use in this life will be donated to fight the beast of cancer.  Good luck.  We know it's rough, you can brag a little.

An amazing post.

You guys are champions.

Bateaux

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Re: Kind of an obnoxious brag
« Reply #26 on: September 12, 2017, 08:09:07 PM »
Keep up the good fight Cindy.  Way to go on 100% donor cells!
« Last Edit: September 12, 2017, 08:11:19 PM by Bateaux »
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okits

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Re: Kind of an obnoxious brag
« Reply #27 on: September 12, 2017, 11:05:43 PM »
So glad your son is doing well!

As for #3, I don't understand why anyone would reasonably hold that against you.  It's not like your expenses went up because you started living the high life, your child got sick and needed parental care!  Not obnoxious at all.  I'm happy for your family.  :)

CindyBS

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Re: Kind of an obnoxious brag
« Reply #28 on: September 13, 2017, 07:52:27 AM »
So glad your son is doing well!

As for #3, I don't understand why anyone would reasonably hold that against you.  It's not like your expenses went up because you started living the high life, your child got sick and needed parental care!  Not obnoxious at all.  I'm happy for your family.  :)

We did not ask anyone for any money.  No Gofundme.  No fundraisers, nothing.  People still gave us a lot of money and especially gift cards.  We probably got thousands of dollars given to us unsolicited.  It was very much appreciated - especially for things like groceries, gas, and take out for those days everything just falls apart.  I graciously accepted.   If bragging about net worth can be a sore spot in general, you can imagine how it could sting - especially for people with a lot less money than us - who gave us gift cards or money.  The housing value increase I can talk about because that has happened to every home owner in my community. 

swinginbeef

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Re: Kind of an obnoxious brag
« Reply #29 on: September 13, 2017, 10:00:53 AM »
All great news! Congrats!

And for anyone who hasn't, go to www.dkms.org or www.bethematch.org and get on the marrow donor registry!! As a previous donor (found via the list and chosen as a match to a total stranger), I can assure you it's very simple, painless and one of the most rewarding experiences you'll ever live.

stashgrower

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Re: Kind of an obnoxious brag
« Reply #30 on: September 15, 2017, 07:07:50 AM »
Well done, and I don't think it's obnoxious at all. Kudos to you all.

UnleashHell

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Re: Kind of an obnoxious brag
« Reply #31 on: September 15, 2017, 10:58:57 AM »
Is that all?





bwhahahah.

That's freaking awesome.  go do some more happy dances. I think you earned them!! all of you.

:D

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mustache you a question

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Re: Kind of an obnoxious brag
« Reply #32 on: September 15, 2017, 02:36:15 PM »
Congrats!  Wish your family continued success, especially with #1!

sparkytheop

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Re: Kind of an obnoxious brag
« Reply #33 on: September 15, 2017, 11:52:08 PM »
That's great news on the cancer front!

My son is 19, with asperger's, and had a rough jr high and freshman year experience.  Believe it or not, what really helped him was joining the high school theater group!  For the first time in years, he was using the term "friends" when talking about other kids.  He was an ace at memorizing his lines, and usually played the straight man type to some of the more animated kids, and it was perfect for him.  All the clubs he was interested in seemed to shut down the year he became eligible (like chess club), so it was hard for him to get involved.  He's graduated now, but is interested in joining community theater when he can, and he still hangs out with some of the kids from the group in high school.  Just something to think about suggesting (it was actually a teacher who talked my son into auditioning).