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MM and School Work (Read 3590 times)
ClaireMom
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My daughter Claire had
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Savannah, GA
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MM and School Work
Feb 3rd, 2006 at 8:59am
 
It has been a while since I posted, after Claire's surgery on 10/25/06.  After about a month of bumpy start when she had frequent TIA's, she has been fairly stable so far.  Whenever life seems to be normal, this MM concern creeps into me, and that's when I resort to this list. 

I want to pose this question to all the parents of school age children with MM.  Do you think MM interferes with academic work?  Being an Asian mom who values academic work greatly, I am having hard time in deciding when to stop having high expectations, and when to loosen up a little bit considering her infliction.  Claire used to be straight A student and a high achiever.  From about a year or so, I notice that her critical skills falling behind compared to pure memory skills.  I wonder how much of it do I have to relate to spread of MM in her brain.  How did the other children do before and after surgery, and what is their long-term outlook?  Have any of the children successfully went to college and do good work? 

If you want to e-mail me privately, please leave a message for me in the private e-mail.  I am eager to discuss this concern with other parents.

Thanks, always.
Alexis Smiley
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Helenor
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Re: MM and School Work
Reply #1 - Feb 3rd, 2006 at 9:14am
 
Hmmm. I had surgery when I was 14 in Middle school. My grades before were straight As, but afterwards I had one or two Bs. I believe that the Bs were a result of classes getting harder, not brain surgery. After surgery, my parents were pretty lenient with grades, telling me to recover first and grades came second in importance. I think I'm doing okay in school now, not magnificent grades since I still have one or two Bs, but not really low either.

My parents are hard on me about school sometimes, and I know it's because it's my junior year, very important year for grades and I haven't gotten good enough grades to make up for my lower sophmore grades. But in school, I'm able to take  some AP classes. I haven't really thought of MM affecting my grades. I thought that stress had a bigger factor for me.
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mg12061
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Re: MM and School Work
Reply #2 - Feb 3rd, 2006 at 9:59am
 
   This is something I will be extremely interested in hearing others answers too.Our experience says that yes it does affect Kathleen's school work.It's kind of hard to tell what level she would be at if she hadn't had MM and several strokes because she was also born with Down Syndrome.She has always been a very high functioning child considering her Down syndrome.What I see that is different is her level of energy and concentration.What happens is she has great days and not so good days.Days that she just appears to be exhausted,and not very responsive.As a team we're trying to come up with a plan for these times and some strategies.Maybe even find a common denominator as to what causes these days to be not so good.I'm not so sure we'll find one, I think there are just too many things that can affect her day.Like heat,lack of sleep,hydration,possibly other things she can't tell us that I know other people experience like numbness,confusion,headaches,blurred vision etc....The school will wnat something from a Doc to add to her IEP but I'm not sure what Doc to go to for this,and what they can really add.It seems I've gotten more input from tlaking here with others as to what their day is like and what they feel like on a not so good day.I hope this made some sense.What does your daughter tell you about her day and how she feels? does she tire easy?Looking ofrward to others input on this.
Mary Grace
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ClaireMom
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My daughter Claire had
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Re: MM and School Work
Reply #3 - Feb 3rd, 2006 at 1:12pm
 
It has been couple of hours since I posted, and I am already seeing some interesting responses.  I hope that most of the moms of school-age children notices this thread and contribute, as I would like as much input.  Being out of surgery only 3 months now, Claire looks like as if nothing happened.  However, she complains of frequent headaches, and easily gets tired.  We started her music lessons, and she is back in tennis lessons, which was fine for her.  Sanelle's response is interesting in that lower grades are not due to brain surgery but harder work.  As a parent, you try to unravel how much is due to changes in her health and how much is due to lack of hard work.  You tend to walk the fine line between understanding and high expectation.  I am sort of rambling here but I would like to discuss with other parents and MM grownups who have been through school about this. 

Does Moyamoya put a stop to any higher aspiration about education you had before?

Alexis
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Re: MM and School Work
Reply #4 - Feb 3rd, 2006 at 1:14pm
 
I believe that when you put your mind to something that anything could be done.  When I was 12, I had was diagnosed with MM and had two surgeries.  The left left side of my brain was the one that was affected the most.  My reading comphrension and writing was affected and for awhile I couldn't keep up with the amount of reading that I had to do to learn the subjects.  Luckily, I was able to get time extensions for exams that I had to take.  I took the extra time to take tests for the first year or two then eventually joined the rest of my classmates using the normal allotment of time for exams.

Quick side note: Check with the school to see if they will allow you/ your child to take more time for tests.  I know this is possible with SATs and other standarized tests.  This will probably require a Dr's note or something.

In the end, with lots of practice and time, my reading comphrension and writing got better.  I guess what I'm trying to say is, you just have to try and work at it and don't think about MM holding you/ your child back in terms of academic acheivement. 

I'm now an engineer at a biotech company.  I successfully completed my bachelors and masters degree programs.    Smiley

Michelle

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gotchlorine
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Re: MM and School Work
Reply #5 - Feb 3rd, 2006 at 1:43pm
 
Hi Alexis!

It's great to see you on the board.  I hope you Stanley, Claire and Elliott are all doing well.  We do need to catch up!  You know some of what I'm going to write here, but I think it's important to give the information and perspective to others also, so bear with me, o.k.?

Tara wasn't properly diagnosed until the end of her junior year of high school.  The doctors said that her 2 small strokes likely occurred early in infancy so I believe, in hindsight, that she had MM at a very young age.

Tara has a long history of problems with test-taking.  She was an almost straight A student . . . until it came time to take a test . . . and then she would absolutely bomb it.  Unfortunately, this wasn't an isolated incident - it happened consistently.  We were frustrated as we also placed our priorities on academics.  Campbell and I wanted her to be the best at whatever she did.

Fast forward to now and a year and a half post-surgeries . . . our perspectives have changed.  We're grateful to have a child (well, not so much a child anymore, as she's celebrating her 19th birthday today!) who's alive and well.  Please don't misunderstand me - academics are still very important.  But the expectation of her having to be the best (at least for me and Campbell) doesn't exist anymore.  She needs to get her education and be happy with her chosen profession.  That's all that matters.  Does it have to be at the best college or university?  As far as I'm concerned, no.

Tara's test-taking difficulties may have existed even without her MM.  I don't think we'll ever know.  What I do know is that she's happy.  She knows what she wants and she's going after it.  The 3 of us have occasional melancholy moments about the affect MM has had on our lives.  It wasn't what we planned!  Life isn't about what we've planned, though, and we must adapt to what comes our way, all the time believing that there is a reason for everything.  (Being the control freak that I am, this is never easy!)

As a fellow parent, my advice to you is to try not to worry.  Certainly keep an eye on her other side, because (as you know) if the blood flow to her brain is compromised it obviously will affect her schoolwork.  Having met Claire, though, I'm sure she'll do fine.  She's a bright, energetic, positive child who will find her way.  And, with parents like you guys, how can she go wrong?  Looking forward to seeing you next month . . .

Warmly,
Jill

     
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Shan
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Re: MM and School Work
Reply #6 - Feb 3rd, 2006 at 1:59pm
 
Hi Alexis,

Sorry, I don't have any direct input to this thread, but I got excited when I saw your name, so I thought I'd stop by...and say "HI!"

Please give Claire a big  Smiley for me and let her know we're thinking of her!  (I still have a box under my desk at work all packed up and ready to be mailed..sorry, it's been here since Christmas!  Embarrassed  I actually went to the post office twice in December, but the lines were unbelievably loooooooong! Anyway, enough excuses..I will go by the post office sometime this week.  Just discard the Christmas card that's in there. Wink )

By the way, this is an interesting thread.  And my  Smiley...I also find myself a little hard on my son and have high expectations from him academically.  (I think this is because my parents were this way with me.)  My dad always told me that even if he tried, he couldn't get a C.  (He always got A's and sometimes B's..)  I do think though, that MM may be affecting Claire.  For me personally, my frequent headaches do affect me at work.

That's all for now...

Aloha,
Shan
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"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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ClaireMom
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My daughter Claire had
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Re: MM and School Work
Reply #7 - Feb 3rd, 2006 at 5:18pm
 
Jill, I am glad that you noticed me.  I saw the pictures from Princeton and wow, you guys were across the continent.  It must have been super for Tara to frolick in the snow.  Shan, good to hear from you, too.

This is becoming very interesting.  I feel that, I am getting over the information-gathering stage, when I was frantically searching for information in the website, and crossing over to "Living with Moyamoya" stage, as new questions about how to plan for the future and cope with daily crisis. 

Jill, I think I asked you before about this briefly and what you have written is exactly what you told me.  However, I did not know about Tara's testing problem.  Interestingly enough, Claire's testing difficulties just started to emerge, and that is why I started this thread. 

I try very hard to understand how my daughter goes around the day in school and at home with MM and how MM affects every aspect of it, but there is a limitation for me since I myself is not the one with MM.  Michelle's response was very interesting for me in understanding what my daughter is going through.  Her reading comprehension level seems to have fallen down, but again, it might have started even with MM.  These are not the questions that we can ask Dr. Steinberg, and I wish that there more research into the way MM affects brain functions, so that we parents can use to deal with problems of and plan for the future of MM children. 

Are there any other MMers or parents who can give their two cents?  Michelle, thank you so much for letting me know how far you have accomplished in your education.  It is inspiring. 

Alexis
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Roz
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Re: MM and School Work
Reply #8 - Feb 3rd, 2006 at 7:16pm
 
Alexis,

Just before I was diagnosed (I was diagnosed just before I turned nine), my schoolwork started to slip. I had also always done well at school previously.

I had my surgeries done in January and May 1996 at age 14 and 15. I have to admit, my writing didn't seem to flow as easily afterwards - by that, I mean the thought processes going into writing - it took me longer to compose what I wanted to say. I did very well with my GCSEs (exams sat at 16) and went on to do my A-Levels (exams sat at eighteen). My grades allowed me to go on to university and I graduated in 2002. I was also allowed extra time in exams at school and university.

I am now very happy in my job in the Insurance department of a national company. Incidentally, I told my manager about my Moya Moya today and he was absoulutly great about it. He has said that he has no worries about my work. I have a great job and a great manager!

I had a routine Neuro-psychology assesment done last summer and the results were normal. I have to admit that I did struggle with the mental arithmatic/short term memory tests but I think that may be due to lack of practice (mental arithmatic wise) rather than Moya Moya.

I hope this post helps.

Best wishes to you and your family.

Roz
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« Last Edit: Feb 3rd, 2006 at 7:20pm by Roz »  
 
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ClaireMom
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My daughter Claire had
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Re: MM and School Work
Reply #9 - Feb 3rd, 2006 at 9:20pm
 
Wow, Roz.  Thanks for posting all the way from England.  We are planning to visit London with a couple of years. 

Your saying that the grades started to fall off with diagnosis are interesting.  With Claire, it started a few months before that. 

By mental arithmetic, are you meaning quantitative reasoning, aka math word questions?  Claire started lagging behind it those.  Again, we never know how much is due to MM and how much is due to her ability. 

The most important thing is that you went on and finished college and have satisfying career.  I will be very happy if we can expect that.

Thank you so much for sharing your stories with me.

Alexis
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Re: MM and School Work
Reply #10 - Feb 4th, 2006 at 8:10pm
 
Hi MM Mums/Dads
This is a subject that I also am very concerned about...When you look up info re MM. It does indicate that cognitve development can be affected.

My daughter has prob had MM since infancy. She is now being considered for surgery. The rational for surgery has been escalated because of Lydia s frequent TIA S and her learning difficulties,( which are deteriating)

Lydia has 16 hours  1 to 1  school support a week. despite being very advanced in her language skills.  She gets extremly tired in school by the afternoon and needs fresh air often.

The MM consutant we deal with in London says that learning probs are linked to MM in children.

My little girl really strugges in school despite being a bright child. She tells me that her brain feels "fuzzy" often, and that its hard to concentrate if others around her are noisy.

I dont know what the future holds for Lydia re her cognitive development, hopefully after surgery this may improve !

All I can do is give her as much support and encouragment as I can so that she has a feeling of  self worth.

Lou x
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love and hugs Louise & Lydia
 
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Roz
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Re: MM and School Work
Reply #11 - Feb 5th, 2006 at 8:07am
 
Hi Alexis,

If you wanted to, I would love to show you all around London. I'm about an hour and twenty minutes away by train and have done the tourist sight-seeing bit myself. The open top red bus tour and boat trip along the Thames allows you to see quite a bit.

With regard to mental arithmatic, I felt that I struggled because I had no pen and paper to work things out - I wasn't allowed a pen and paper as I think the person assessing me was looking at how well I could break down information, hold the information, then use it for another part of the question. For example two or three part Maths questions. One question involved the following - (I can't quite remeber the figures but I'll use my own)  six apples cost £1.27. A man bought a dozen apples and gave the shop keeper a five pound note. How much change was he given? I could quite easily tell the assessor how to figure it out but couldn't hold the information to do the sums in my head for long enough. These type of questions were read out to me so I couldn't see the figures in front of me. I could quite easily solve it if I had a pen and paper (or calculater!). I was also given a time limit. I was very concerned about not being able to do such a simple sum and the other short term memory tests but the assessor reassured me and said that it may simply be more of a concentration issue than anything else.

With reference to my schoolwork slipping prior to diagnosis, the onset of physical symptoms were more sudden. From what I remember, the cognitive side of things may have been more subtle and I think that with diagnosis, my schoolwork was then looked at more closely.

As for cognitive improvement after surgery, I asked the assessor if he'd studied other Moya Moya patients pre and post op and he said that he had. He mentioned one particular case where he had seen very encouraging improvement. I hope this info in turn will help both you and Lou.

Best wishes,

Roz
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« Last Edit: Feb 5th, 2006 at 11:25am by Roz »  
 
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Re: MM and School Work
Reply #12 - Feb 5th, 2006 at 11:52pm
 
Hi all!!!  I was diagnosed at the age of nine.  Had one surgery at nine, and the second at ten.  Never had a stroke, just TIAs.  I don't recall ever having difficulties before or after diagnosis.  It was even speculated that after the surgery and the increased blood flow, that IQ would improve.  I'm now 30 years old, graduated 1st in my nursing class (Bachelor's degree), and currently work as a pediatric emergency room nurse.  We are a Level I Trauma Center that sees over 48,000 children annually.  Just my experince...

Renee
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Re: MM and School Work
Reply #13 - Feb 6th, 2006 at 7:51pm
 
Hi, Alexis:

I saw your post in another thread  and I totally agree with you that we can not thank enough for the support we received. I saw many responses on this interesting topic already, but just wanted add mine. Li was diagnosed two year ago when she was 16 and in her junior year, no treatment until last month. During these two years, she graduated from high school and got into a college, but I did notice her short memory is not as good as before, school work got harder for her. For us we really don't know it is MM or the late effect of chemo, she had many high dose chemo at age 12.  According to herself, when writing, sometimes it's getting harder for her to search words and had no interest in math any more. For reading, she needed more times to get the facts on what she is reading. Just like Jill said, we are so grateful that she is still with us, I feel happy on whatever she is happy to do. She is still very interested in humanity, like reading, writing. Now she is at home, will return to college this fall, we'll wait and see how she is doing after the surgeries.

Regards
Tingxin
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Re: MM and School Work
Reply #14 - Feb 8th, 2006 at 12:21pm
 
I've been following this thread with great interest.  Alexis, being of Asian descent as well (Indian), I can empathize with the value on academics that you have.  My parents had the same emphasis on me growing up. 

After being diagnosed with MM in 2005 (at the age of 33), a lot of events in my life made sense.  I had what a lot of people have described above - I had short term memory and reading comprehension problems during school and higher education.  I thought I had a learning disability in high school but that dept. thought I was crazy for thinking so (as I was an AP student and I was excellent in my math and analytical skills).  In college, I finally was tested and they confirmed mild learning disability/dyslexia.  My parents could not understand why I had so much difficulty.  My older brother was brilliant - he graduated high school at 16, med school at 23 with almost a 4.0 GPA (still love him – it’s ok HAHA). 

When I finally was diagnosed last year, both my pre and post surgery neuropsych testing confirmed that I had this mild dyslexia due to reading comprehension and short term memory.  By this point, we realized why.  When I was first diagnosed, it was very dispiriting for me.  However, when I think about it, I have really accomplished a lot.  In college, after my LD diagnosis, I started focusing on the things I do well.  Analytics and computers became my thing.  I went on to finish college, get 2 master's degrees, and I work as a system analyst at a major hospital conglomerate in Long Island, New York.  I still have trouble at times, especially in the last 4-5 years, but despite the uphill battles I had, I believe it's possible to succeed in anything you put your mind to.  While I understand the concern (my parents had the same), I would continue to support Claire in the areas she is good in and she will succeed guaranteed. 

I don’t mean to imply that you should ignore the areas she’s having trouble in.  If it helps, I read more books now than ever before.  I am really slow (and sometimes can’t remember stuff from one chapter to another but then I just go back and re-read), but I still love surrounding myself with books.  The local bookstore is my favorite place.  I would continue to support her in these areas where she’s having difficulty too – the power of encouragement knows no bounds. 

Hugs,
Trina
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Re: MM and School Work
Reply #15 - Feb 9th, 2006 at 5:03pm
 
Claire, it's been a while since I've visited MM.com, too, but glad I took a look today.  It seems theres definitely something related with mental ability and MM.  These replies are great!  It just gives us such hope for our kiddos to hear that others have been there and came out alright!
Our son, Kyle was just 3 1/2 when he had a left-hemis. stroke and was dx'd w/ MM.  He had surgeries on both sides and then occupational and speech therapy.  No one ever mentioned that he may have LD's or suggested testing.  In 1st gr, his teacher noticed that he could not read anything even though his phonics & comprehension skills were excellant.  The schools' tests did not reveal an LD, but they enrolled him in the sp ed. center for ELA anyway and he stayed in until we had him put back in the regular class in 4th gr.  His reading grades were fine, but writing skills were lacking so they put him back in sp ed for writing.  We eventually had him tested by a neuropsycologist who found that he did have language skill deficits as well as trouble with attention and impulse control.  Her conclusion was that his comprehension would serve him very well in spite of his deficits.  We left him in sp ed for 2 more yrs (writing only) then had him tutored (200 hrs - very $$$) at a local learning center over the summer and he is doing pretty well so far this year.  Good solid B's in ELA & history, Sci (sometimes A's) and B - D's in Math.  This year he seems to have more trouble with tests that previously. ?  He does say that he feels the tutoring helped with his reading.
In retrospect, I wish we had known about the testing earlier and had him tutored privately rather than the sp ed. classes.  He felt "different" going to different classes than his peers.  We also noticed that their goal was to work him at his level, not help him catch up and move out.  That may be handled differently in a different school district.  Ask around to parents whose children have been in the program.
Kyle has always dealt with headaches, too.  His neurologist has him on Periactin to help with the migraines.  He really doesn't have them much anymore. He used to get very tired, too.  A neurosurgeon told me that is to be expected of someone with MM.  Kyle takes Strattera for the ADD (which, we found out after the dx, is very common in someone who has had brain injury).  Strattera is not a stimulant, so is safer for someone with cerebra-vascular disease.
We try to keep his schedule light - sometimes that means I email his teacher to ask for an extra day for a project (he has classroom modifications which allow this), but he is really doing quite well these days.  In addition to school, he is in Boy Scouts (earned his Star rank in just under 2 yrs) takes tennis lessons 1 x wk and is playing in a church basketball league (its much more low-key than the school or area leagues).
I definitely recommend the neuropsycological testing.  With learning, the brain is so much more adaptive at an early age.  The sooner you know and can get intervention, the less they'll have to struggle.  I learned how to help Kyle w/ his reading at a Center that teaches parents and teachers how to help kids with Dyslexia even though Kyle is not dyslexic.
He may go to a local Jr. college before the University, but I truly feel he's going to be OK!
Good luck to you - I know you worry - you are a very caring parent and it does get frustrating not knowing who to ask, what to ask, etc!

Sue
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Sue (Kyle's mom)
 
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Re: MM and School Work
Reply #16 - Apr 5th, 2006 at 7:35pm
 
Oh my God!  I did not realize that there were many other reponses to this thread.  I must have forgotten to turn on the notice for the reply.  Anyways, glad to hear from you Tingxian, Sue and Trina.  We have been at Stanford for Claire's 6 month follow-up.  We met Jill, who is on official Stanford payroll now. 

Trina, I have heard about you from Jill and DJ, (and about Dr. Dodd, who I haven't seen personally), but I had not known about your personal accomplishment.  It is very encouraging for me to learn that guys like you are faring so well in real world after the surgery.  Your experience with short-term memory and reading comprehension make a lot of sense.  Claire was, and still is, a brilliant young girl.  We just couldn't understand why for about a year before the surgery, she would have lapses in concentration.  I understand that it is due to the lack of supply of blood into her brain, at least in part.  

I agree with Tingxian and Jill.  What is most important is that I have my daughter with me.  She is being such a trooper one MRI after next.  We just finished our follow-up at Stanford, and she realized again how hard it is to go through angiogram and lie flat for 6 hours in a row.  She just amazed me this time, and I realized that I am truly blessed with such a tolereant, fortuitous, and generous child.  

Dr. Steinberg told us that her other side is ready for the surgery.  Her surgery is scheduled for June 6.  I start to feel apprehensive about the upcoming surgery, but she is not.  These kids are strong kids, and they put us into perspective.  Glad to hear from all of you, MM parents.

Alexis
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« Last Edit: Apr 5th, 2006 at 7:42pm by ClaireMom »  
 
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Re: MM and School Work
Reply #17 - Apr 5th, 2006 at 9:46pm
 
It's been very intresting reading all the responses. I've been going through similar situations with my 10 yr old son. He was diagnosed in January 2005. I have always pushed him to be the best. He was always an A student. Even after missing so much school due to MM and being tutored at home. After several strokes and occasional Tia's he was still an A student. After each incident he had to learn alot of things over again. It wasen't until a few weeks ago, I relized his grades were decreasing. Mostly, in Math (his best subject). Of course, after my son was diagnosed I put my priorities in order. His school work is important but his health is #1. I still push him but, in alot of different ways. He has had to start over so many times. He's a tough boy and does not quit. His PT, OT and speech are very aggervating to him but he overcomes them each time. I have backed off alot with the school work but, I still push him. I think you have to. I have always told him he's going to be president. Everyone is different, and after reading all the young adults responces, I think I may hover to much. I don't know how else to be. Also, I think the children need to feel grounded and normal. If you change everything and treat them differently, won't  that will remind them that they are different? I don't think I helped at all, I hope I haven't confused you as much as I did myself. God Bless, Saundra
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Moya Moya Survivors, You are an inspiration to all of those who know you.... an example of courage..... true heros.
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Re: MM and School Work
Reply #18 - Jul 28th, 2020 at 4:13pm
 
Market research by Everest Poker found that students are the largest group of online poker players. In different countries, this figure ranges from 20 to 30% of the total number of online poker fans. Do you think bluffing skills can come in handy in the test? The money won is useful, that`s okay, you can use the services of professional essay writers for hire and order a professionally written essay from the сustomwritings.com. How do you like this skill development among students?
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