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  • Ever Wonder About Your CRS syndrome, Quiltheimers...ADHD?

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    Old 06-19-2009, 08:44 AM
      #71  
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    You go girl!!!! This is one of the reasons schools need to stop trying to make everyone act and think alike. MY daughter is 33 now and a mom, we struggled through her school years---teachers said she was very bright, just lazy all through grade school & junior high. They had to practically torture her to get her to read. Stupid me, believed them because she was in a girls group of Job's Daughters and had to memorize pages for their meetings and did it quite well. Finally in her first year of highschool, her english teacher contacted me and told me that she was flunking that subject, but he wanted to have her tested because he was sure she had dyslexia. She tested and guess what, she had a form that reversed whole words. They put her in a class to help her with her problem and within 6 months we could not stop her from reading and her grades improved. Found out the reason she knew her memory work for Jobies was because I was reading it to her and having her repeat it. Years later a doctor diagnosed her with bi-polar as well. She is not on any meds, but has learned to be able to control it better with age. Now fast forward to my grandaughter---had trouble sitting still in class and could only focus for a certain period of time. Had trouble retaining what she read or wrote down. Had her tested in grade school and she has ADD
    My daughter refused to put her on meds because the meds totally ruined my nephew after he was diagnosed. He is pretty much a zombie today. We struggle a little, but her teachers are infomed at the beginning of each new school year and that also helps. The only problem we have had is with her principal. She has had her since 4th grade and this woman should not be in that position. She only likes and caters to the normal, good kids, and thinks every parent should be in the PTA and volunteering at the school. A little hard when you are a single parent and work full time. Yes, we have complained and my daughter is filing charges with the school board as we have discovered we are not the only ones who see the problem. Seems like this is the norm out there. Besides, we all have our quirks , I don't have either one of those, but I do have maniac depression and that is a whole other battle.But it seems that no one really understands it unless they have it or live with someone who has it. My heart goes out to anyone that struggles with any of these things. We just keep taking one day at a time and one situation at a time. I tell my girls, just be yourself, I love you no matter what, but I am always here to help.
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    Old 06-19-2009, 01:07 PM
      #72  
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    Originally Posted by fktsewing
    You go girl!!!! This is one of the reasons schools need to stop trying to make everyone act and think alike. MY daughter is 33 now and a mom, we struggled through her school years---teachers said she was very bright, just lazy all through grade school & junior high. They had to practically torture her to get her to read. Stupid me, believed them because she was in a girls group of Job's Daughters and had to memorize pages for their meetings and did it quite well. Finally in her first year of highschool, her english teacher contacted me and told me that she was flunking that subject, but he wanted to have her tested because he was sure she had dyslexia. She tested and guess what, she had a form that reversed whole words. They put her in a class to help her with her problem and within 6 months we could not stop her from reading and her grades improved. Found out the reason she knew her memory work for Jobies was because I was reading it to her and having her repeat it. Years later a doctor diagnosed her with bi-polar as well. She is not on any meds, but has learned to be able to control it better with age. Now fast forward to my grandaughter---had trouble sitting still in class and could only focus for a certain period of time. Had trouble retaining what she read or wrote down. Had her tested in grade school and she has ADD
    My daughter refused to put her on meds because the meds totally ruined my nephew after he was diagnosed. He is pretty much a zombie today. We struggle a little, but her teachers are infomed at the beginning of each new school year and that also helps. The only problem we have had is with her principal. She has had her since 4th grade and this woman should not be in that position. She only likes and caters to the normal, good kids, and thinks every parent should be in the PTA and volunteering at the school. A little hard when you are a single parent and work full time. Yes, we have complained and my daughter is filing charges with the school board as we have discovered we are not the only ones who see the problem. Seems like this is the norm out there. Besides, we all have our quirks , I don't have either one of those, but I do have maniac depression and that is a whole other battle.But it seems that no one really understands it unless they have it or live with someone who has it. My heart goes out to anyone that struggles with any of these things. We just keep taking one day at a time and one situation at a time. I tell my girls, just be yourself, I love you no matter what, but I am always here to help.
    Sometimes, it's just plain hard being a parent, and sometimes, it's just plain hard being a kid.
    I am so glad that your daughter was finally able to have some answers, and that made you all more aware, when your granddaughter came along.
    I was said to have manic depression for many years. They wrote, high functioning hypo-manic in my file. A counselor once let me see a paragraph, (although she wasn't supposed to), and someone had detected some adhd, but didn't tell anybody or do a doggone thing about it! that's incomprehensible to me! He worked in mental health!
    It's tough to make these decisions, and for those that can cope without the meds, I hope and pray they do ok.
    For those like me, that just have to have them, I hope they do well, and find understanding from their families. They have a tough row to hoe, either way, but with meds, eventually for most, it gets easier.
    I always tell ppl, (the ones I have confided in)...don't underestimate the power of counseling etc. Pills are just pills, and can only do so much.
    These kids, and adults, by the time they find out they have a disorder, have much to overcome. Sometimes, the parents struggle to forgive themselves, too. thanks for your support, fktsewing :D
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    Old 06-19-2009, 02:56 PM
      #73  
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    Originally Posted by fktsewing
    You go girl!!!! This is one of the reasons schools need to stop trying to make everyone act and think alike. MY daughter is 33 now and a mom, we struggled through her school years---teachers said she was very bright, just lazy all through grade school & junior high. They had to practically torture her to get her to read. Stupid me, believed them because she was in a girls group of Job's Daughters and had to memorize pages for their meetings and did it quite well. Finally in her first year of highschool, her english teacher contacted me and told me that she was flunking that subject, but he wanted to have her tested because he was sure she had dyslexia. She tested and guess what, she had a form that reversed whole words. They put her in a class to help her with her problem and within 6 months we could not stop her from reading and her grades improved. Found out the reason she knew her memory work for Jobies was because I was reading it to her and having her repeat it. Years later a doctor diagnosed her with bi-polar as well. She is not on any meds, but has learned to be able to control it better with age. Now fast forward to my grandaughter---had trouble sitting still in class and could only focus for a certain period of time. Had trouble retaining what she read or wrote down. Had her tested in grade school and she has ADD
    My daughter refused to put her on meds because the meds totally ruined my nephew after he was diagnosed. He is pretty much a zombie today. We struggle a little, but her teachers are infomed at the beginning of each new school year and that also helps. The only problem we have had is with her principal. She has had her since 4th grade and this woman should not be in that position. She only likes and caters to the normal, good kids, and thinks every parent should be in the PTA and volunteering at the school. A little hard when you are a single parent and work full time. Yes, we have complained and my daughter is filing charges with the school board as we have discovered we are not the only ones who see the problem. Seems like this is the norm out there. Besides, we all have our quirks , I don't have either one of those, but I do have maniac depression and that is a whole other battle.But it seems that no one really understands it unless they have it or live with someone who has it. My heart goes out to anyone that struggles with any of these things. We just keep taking one day at a time and one situation at a time. I tell my girls, just be yourself, I love you no matter what, but I am always here to help.
    I have mentioned above about my son and his troubles when he was put into 1sr grade he was tested for a learning disability. I tried to tell them then I thought he had dislexia but I was told in 83 that dyslexia was not a
    medical diagnosis and could not be in his evaluation. He had trouble reading because he could not tell the differance between d p and b. He could not tell between w and m He wrote his last name Moodswall instead of Woodsmall. He had a hard time with spelling. It was virtually impossible for him because he could not remember them. As soon as he memorized them he lost the memory.
    He had a real hard time through school but the teachers always said he tried hard and was a joy to have in class. He is a gentle giant. He is now 31 and 6' 4' Has a theory that you should always let things you can't do anything about slide off your back. Wish sometimes I could do that more!!

    If it hadn't been for computers he would never have made it through school! That and the LD teachers. Some teachers are great and some shouldn't be teachers!!!!
    I had to go to bat for him and keep on top of what the teachers were doing with him. You as a parent have to fight for your child to have the best education possible and stand up for your child's rights!
    My daughter has two sons with special needs and a daughter and she has used my experiences with her brother as a spring board to take control of the situations and not give in!! She has had to fight some ongoing battles for her children to get the teachers and principle to do what they are required to do by law in providing a good and healthy education!(sorry my soap box~ getting down now!)
    They gave him a spell checker he could cary like a calculator and that got him through a lot of term papers. They made allowances for punctuation and things like that because he just could not do it!
    He still does his checkbook in his head because he can't deal with writing everything down.
    He reads a few science fiction books sometimes but he is not and never will be a reader! I used to try to get him to understand that books can take you to new places but he was too bogged down in the pronouncing each word to really get the concept.
    These kids do struggle alot and it is through everybody teaching others what these kids go through that helps change the climate we live in. I find myself teaching people all the time about autism and ADHD.
    When more people understand the problems these kids face it will change the school environments and the public one person at a time!
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    Old 06-19-2009, 03:32 PM
      #74  
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    You go girl. My DD is ADHD and has depression with multiple learning disabilities.
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    Old 06-19-2009, 09:16 PM
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    QNC - I can't believe I didn't find this thread until tonight! You started something wonderful :thumbup: :thumbup: You've been so much fun from the first time I read one of your postings, but this is the best yet :wink: :wink: :wink: As I said to you before, we're both SURVIVORS :D :D :D

    Like so many others who have responded to you, my family is dealing with ADHD. My son was probably ADHD, and his sons are, too. I'm OCD. We're a family of 'A' personalities, all over-achievers, often verbally banging heads with each other :lol: Never a dull moment at our family get-togethers and Holiday dinners :wink: :evil: :lol:

    My 2 grandsons are autistic and ADHD, both need to be on meds to be calm enough to learn :shock: They're 8 and 10. The 10 year old is also OCD. He is just beginning to put words in real sentences. Until THIS MONTH he only used words to get something he wanted (snack, cookie, tickle, outside). He can't speak for himself to tell anyone what is wrong :cry: - so DDIL is his interpreter. She is a fierce lioness - NO ONE stands between her and what her sons (both of them) need.

    They just moved from IL to VA. The VA school disapproves of ADHD meds and wants to take the boys off of them. My son and DDIL said, calmly and clearly, "WE'RE the parents. WE decide about his meds."

    It takes YEARS of behavior-specific, communication-specific and other training to help a child like our 10 year old. His 8 year old brother is less affected, but it's taking years for him. too. He speaks well, so sometimes his needs are ignored because he doesn't seem 'autistic', but he definitely needs behaviorial and other training. Both boys are in special ed classes, tho' the IL school system was trying to put the 8 year old in a 'typical' classroom with an aide. We use 'typical' not 'normal' because the 'n' word simply doesn't apply to the autism spectrum. VA recognizes his special needs and wants to have him in some special ed classes for teacher training this summer - extra summer school which will be VERY GOOD for both him and mom, and give his older brother more one-on-one time with mom.

    The boys had an excellent doctor in Illinois - a neurologist with a specialty in autisim. Now we have to find someone like him in VA - in Fairfax County or the area nearby - the Greater Dulles Airport area - Johns Hopkins Hospital. IF ANYONE HAS A RECOMMENDATION, PLEASE PM ME.

    Bless you, QNC for starting this discussion :-P I think it will probably go on for quite a while. Your 'coming out' has served as a great stimulus for us all.
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    Old 06-20-2009, 04:48 AM
      #76  
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    JoanneS wrote:
    ....They just moved from IL to VA. The VA school disapproves of ADHD meds and wants to take the boys off of them. My son and DDIL said, calmly and clearly, "WE'RE the parents. WE decide about his meds."

    It takes YEARS of behavior-specific, communication-specific and other training to help a child like our 10 year old. His 8 year old brother is less affected, but it's taking years for him. too. He speaks well, so sometimes his needs are ignored because he doesn't seem 'autistic', but he definitely needs behaviorial and other training. Both boys are in special ed classes, tho' the IL school system was trying to put the 8 year old in a 'typical' classroom with an aide. We use 'typical' not 'normal' because the 'n' word simply doesn't apply to the autism spectrum. VA recognizes his special needs and wants to have him in some special ed classes for teacher training this summer - extra summer school which will be VERY GOOD for both him and mom, and give his older brother more one-on-one time with mom.

    The boys had an excellent doctor in Illinois - a neurologist with a specialty in autisim. Now we have to find someone like him in VA - in Fairfax County or the area nearby - the Greater Dulles Airport area - Johns Hopkins Hospital. IF ANYONE HAS A RECOMMENDATION, PLEASE PM ME.

    Joanne, I just can't believe the unmitigated gall of the school system butting in on a medical issue like this.
    I like what one person said, about their teachers, etc. can tell a parent that a child seems to be displaying symptoms that might indicate ADHD and they should contact a professional for testing, to be sure.
    I don't know if I can be of any help, but I can try...referring to your looking for a good doctor in the area your grandchildren live in. I can inquire at my doctor's office. He is an excellent doctor, and any time I went to a new medical doctor, once I said, I was working with this therapist...they didn't mess with that. He is highly esteemed, and respected. In 24 years of being, 'in the system', I have never seen his match. I'm sure there are some others just as good, but not here.
    I appreciate your support, big time! hugs, we be friends from the very beginning :wink:
    I'm thrilled with all the support on this board, and I am so happy that so much information has been added to this thread, for those that are curious, maybe knew a little bit, but needed some encouragement to actually look into these behaviors, disorders and issues. Thanks for adding to this thread, Joanne. I really appreciate it. :D
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    Old 06-20-2009, 04:49 AM
      #77  
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    more sharing:
    I believe if one person in a family has something of the nature that requires medical expertise, it is a family affair.
    You can't be in a family and have no effect on the other members. A lot of doctors and nurses are motivated to their professions, bc of a family member.
    If ppl here, only knew how far I have come in six and a half years, with my doctor, they would realize how important it is, not to just let tom or sally "grow out of it."
    I think I will expand here just a bit: six years ago, my family viewed me as being way too blonde to drive more than 30 minutes from home, by myself, bc I have gotten lost, - no sense of direction. I'd get lost in a round room!
    I struggled to have a conversation with my doctors, bc I was severly intimidated by 'authority figures', and the anxiety would cause my sentence sequence to be all jumbled up. Much of the time, away from home, you couldn't understand too many of my sentences. I am a visual thinker, and if I couldn't, 'see it', I couldn't say it.
    Imagine, trying to say:
    I think I saw a red headed woman, with a little boy, get out of their car and go into that store.
    It might have went something like this, for me:
    I'm not sure, um, maybe this woman,...well she looked about 35, well, my niece is 35 and she looked older than her...my niece lives in Akron, haven't seen he in a while now...she has 3 kids,...their names are...what were we talking about....(trying to remember) (other person has to prompt)...oh, I was just sitting here in my car, and...we just got this car. We bought it...well we borrowed the money, don't know how we'll pay it back, they cut back on my...did you see that show last night with the dancing poodle...I've got to go feed my dog...he just got all his shots, the other day
    I just made this up, as an example, and it doesn't even reflect what I was trying to show. You can actually understand the different phrases, even though, they veer off subject. I was much worse than this...and could not find the 'end' of a sentence...see? I got lost, just talking. Still do sometimes, depending on what I have been eating, (MCS-multiple chemical sensitivities), time of month, amount of sleep, (fibromyalgia),
    etc. etc. etc. Hence the nightmares of driving with no brakes, bc I felt compelled to finish. If I didn't finish one topic...it would keep trying to breakthrough the next thing I was doing or saying...talking was like walking through mud. Even self-talk in my head.
    Can you imagine, not being able to understand your own self-talk?
    Ex: I need to get something out for dinner.
    Me, six years ago, thoughts: I need...hey, I was looking for that...better put it up high bc of gbabies...Crystal will be coming over...this needs to go in washer...oh, I was going to get a band-aid for this scrape...hubby will be home, it's 3 pm...i fell asleep at 3 yesterday...this shoe is tearing up...should get some more, dont want to go outside barefoote...I remember that time...oh yeah, freezer...should get some meat...and this board was laying...there are boards all over front porch...I meant to sweep porch...did I feed the cat?...on and on...over one task.
    Trying to get pictures of each thing, couldn't hang onto them...distracted at every turn. Couldn't cook a meal, without at least 3 timers!
    well, enough sharing, LOL...hey, didn't mean to put ya to sleep, LOL!
    yeah, those that knew me then, that were impatient? had to find a way, to GET AWAY...me? I had to finish what I was saying to them...so I was stuck, trying to finish in my head, long after they had left! :wink:
    TTFN, QC
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    Old 06-20-2009, 05:45 AM
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    C - the more I know you, the more I like and love you!
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    Old 06-20-2009, 05:57 AM
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    Originally Posted by k3n
    C - the more I know you, the more I like and love you!
    aww, me too...and your so honest and right, LOL!!! :mrgreen:
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    Old 06-20-2009, 07:57 AM
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    You make me think of my son. Sorry I write about him a lot but this is so like him!!
    He did not talk alot but kept to himself. I would ask him to carry a dish to the kitchen and I would find it on the dining room table. He had gotten distracted and ended up outside in his own fantasy world. He used to battle the monsters(trees) with a branch(sword) and spend hours in his own world because it was less confusing than dealing with people.
    He would have a hard time staying on task or getting through anything he was asked to do. When he cleaned his room he would throw everything good and bad into a garbage bag and be done! I lost a lot of legos that way! It was his way of coping with staying on task and not getting yelled at. I always had to go through his trash (If I caught it before he threw it away!) and go through it for the things we didn't want thrown out!
    With my autistic grandson we have come to understand this is partly a lack of impulse control. If I think it i do it. So every thought that happens distracts because the impulse is to follow it instead of shoving it aside for what you were already doing.
    With Zach this results in running to do what ever he has thought of. He outran his mom and his dad across a main road through three streets and was caught by a cousin at the bottom of the hill. He was going to go to the high school to play on the stage someone told him about. He is obsessed with putting on shows. He watches a lot of Wiggles and acts out what he sees. He is getting some better at controlling his impulses but this just happened two weeks ago.
    So I completely understand the jumbled thinking! I cannot clean one room and then go onto another. I pick something up and go the kitchen to put it away and stop to put something there away and then that something takes me to another room and so on. I do get done! eventually!
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