Our Journey with Dyslexia and ADHD in MS

[ANewMe]

The following is a from my blog www.picksnpassions.blogspot.com

 

 

 

 

For the past five years I have watched my son struggle with his studies and try

to keep him from giving up. I have heard him say "I'm stupid." or "I'm dumb"

more times than I can count. He refers to people who do well in school as "those

smart people" while lumping himself in the group of "zeroes". I have comforted

him when he got in the car to tell me he was one of two people left in the

bleachers at the Award's Day Banquet. It didn't matter that he had won Science

Fair or placed at District....he was still left in the stands....alone...with no

award because he didn't hit that all A or A/B Honor Roll. No matter how hard I

have tried to drill into his head that he IS smart and that he is NOT a

looser....it just doesn't seem to take. When I explain to him that HIS 100% is

good even if it's a C or D (depending on the class) he can't grasp it because

it's not the 100% that is expected from whoever. Let's face it....everyone's

100% is different but my son has learned at an early age that it is

not.

 

When he was young we knew that this child was more energetic than normal. In fact, there is no candy-coating it. He was WILD. No matter what we did he could not focus on anything more than a few seconds and he was wide open until he literally passed out.

 

When he got to kindegarden I repeatedly told his teacher that I was concerned because he "didn't get" the site words. He couldn't remember them. He wrote sloppy and backwards. We got to first grade and again it was a nightmare. He couldn't retain anything and again I was concerned, but I was again told it would work out. During this time we decided to have him tested at our own expense in order to speed up the process of getting him help. He was diagnosed with ADHD and I brought all of that paperwork back to the school and was led to believe we were heading down the right road.

 

Second grade.....we saw a little improvement because we tried medication as a last alternative, but this year there was so much more that he was responsible for. His spelling grade was anywhere between 0 to 17, with 17 being the highest. He couldn't read. I repeatedly talked to the teacher and begged for help. I asked her if his spelling words could be cut in half like the previous year. We got nowhere because she said, "I have half a class scoring the same and I can't do it for them." You would think that would tell you there was a problem?? But, hey, I'm just worried about my kid at this point.

 

We scheduled a meeting and looking back I'm thinking that maybe this was a TST meeting? It consisted of the Principal, Psychommetrist, his teacher, other teachers and myself. Now remember, I work for the school district but have no clue what TST is, how it works.....nothing! I thought I was going to get help from my son in this meeting, but boy was I wrong. In hindsight I wish I had taken someone with me as a witness. After listening to my concerns they looked at test scores, which were not good. I told them that I really thought he may be dyslexic, but I was quickly told that MS didn't recognize Dyslexia as a reading disability and even if I DID get a diagnosis they would not make any accomodations for him based on that diagnosis. At that point the Principal, being very frustrated said.....AND I QUOTE "I don't know anything else to do other than put him back in first grade!" I absolutely thought I was going die. I could not believe what I was hearing. They seemed so frustrated and "out-done" with my baby like he was a burden! I quickly told her that would kill his self esteem. She very quickly told me....and again I quote..."You need to decide what's more important, his self esteem or his achievement!" After much discussion they decided that they would have him tutored with first graders and just see what happened. I left there in tears and went straight to Central Office and asked to have him moved to another school. After telling them we would sale our home and get an apartment in the other school zone we got our transfer. Imagine our suprise when they pulled him the first day at his new school and said he had strong dyslexic tendancies and was placed in the Texas Scottish Rites Program!! What we found out was that this program was only offered at certain schools so we were lucky we got him transferred to a school that had it. I still wonder why they did not tell me in that meeting that this program was available since I very clearly brought up the issue of dyslexia? The Psychometrist had to know it was there!

 

When we got our transfer, we were very fortunate to get a fine teacher who sat down with us and set goals for our child. We agreed that we had every intention of holding him back and that we would all focus on progress and not grades. When he started 2nd grade he read on a Pre-K level. At the end of the year he was on a 1st grade level. He gave up time during the summer to go to Knowledge College and again showed a lot of improvement. With a lot of hard work he finished Texas Scottish Rites but in third grade we hit another pothole. The medication that he was taking had built up in his system and he was no longer able to take it. Because of an underlying health issue we were afraid to try anything else so we went with no meds. He struggled and fought through 3rd, 4th and 5th grade. Home life was a nightmare. It's hard to get a kid motivated when he thinks he's dumb. When he does give it all he has and still fails....he sees no point in trying.

 

So now we are in 6th grade and worried sick about him. No idea how he will make it in Junior High, but I will say that this has by far been his best year as far as teachers. I am in no way knocking any of his past teachers, because they have all been good, but this year he has a teacher who "gets him." She sees his struggle and seems to know how he ticks. She recognizes that HIS 100% is not the same as the kid sitting in front of him. When we get excited over a C she understands that we aren't settling.....it's because that C for him is the equivalent of an A on everyone elses playing field.

 

I have been working at the same school my children attend for the past two years. I just found out about the 504 Plan and we were so excited that we may have found a way to level the playing field for him. We have his diagnosis for ADHD and with that we are hoping that some accomodations can be made that may inadvertantly help with his Dyslexia. Maybe by doing this he can go into the classroom and finally have an educational experience that is the equivalent of running across a field instead of trying to run wide open up a cliff. Thank God I wasn't holding my breath because I wouldv'e died.....I was told that the diagnosis in his file is no longer acceptable because it's too old so we have to start all over, fork out more money to go back to the Doctors and get re-diagnosed. Frustration is not even touching what I'm feeling right now.

 

So here we are.....back to square one. I'm frustrated beyond tears, but I can't show it. Not to him. I have to be his rock. He has to know that his Mama BELIEVES that he can get a fair shake because if his Mama doesn't believe why should he?

 

There are some serious questions and issues that need to be addressed. I want to know why I went through the expense of having him tested and getting the diagnosis if it wasn't used. I was told that they don't just automatically do something with an ADHD diagnosis. If that's the case why did I go get it and bring it to them to get help? If I needed to once again ask for help with the diagnosis in hand, why didn't someone tell me? All the times that I spent on the phone talking to the teachers.....did it count for anything? Why wasn't the 504 Plan suggested? I'm also concerned with the fact that we can no longer afford tutors to work through TST interventions so the kids are being buddied up with another student for tutoring. Has anyone stopped to think what this does to some of the kids? I understand that it has worked in some instances, but I can very confidently say that my 6th grader would have been humiliated beyond words. I am very grateful that he is able to work with an adult but what about the other kids? And the ones who aren't humiliated...do they take it serious working with another kid? If parents are to get involved they need to know what avenues are available. If the law allows different options then parents need to be made aware when they are struggling with their kid. A kid shouldn't have to fail to get help. We need EARLY intervention BEFORE they fail.

 

I recently called the MSDOE and found out that the statement "Mississippi does not recognize Dyslexia" is not a completely accurate statement. Our state does recognize it, but it does not recognize it as a criteria for a 504 Plan etc. Most kids who have Dyslexia also have another condition that DOES qualify them for a plan such as ADD or ADHD. I also found out that the state has grant money specifically to help school districts work with dyslexia. All we have to do is apply and that money has been available since around 1995....4 years before our son was even born!!! So why are we not trying to get this funding? If we want our kids to score high on all of these tests then they have to be able to read them. If the words are running together or running all over a one page vocabulary test, or if a one page test causes a sensory overload.....those test booklets are going to be a nightmare. Our kids need to be given the skills to cope and learn to work with what they have so that they can excel. They deserve that opportunity.

 

I won't stop fighting for my son. I believe in him and I know he is smart. I hope that because he has experienced what it's like to have a teacher believe in him that it will help keep him in the game. I hope that it will be enough. At the rate things are going we may not get help until it's too late. I don't want that for him. I want him to enjoy his childhood and education is a major part of his childhood.

 

 

NOTE: I recently looked back over the Diagnosis that has been on file and it stated that he had a Provisional learning disability in reading and math. If I'm not mistaken this should have qualified him for services???

Edited May 11, 2012 by ANewMe

[Mt_Rider]

What we don't know about brain function very likely is far more than what we DO know. It's a good thing your son has an advocate. Too bad this has only brought a bit of help from the schools. I hope your move will bring your son everything he needs to find his own excellence.

 

Have you been able to find any hobbies he can excel in? School consumes most of the time/energy and is the primary standard for accomplishment in children. But if he can be good at something else....

 

Way back decades and decades and.... well, way back when I started school , I could already read a bit (in an era when that was actully discouraged!) but my math skills were strangely awful. They did not improve. I thot I was stupid until a teacher I had for both 4 and 5th grades convinced me I wasn't. Funny, it didn't matter that I excelled in the language skills. Testing out at 99th percentile. But testing in 15th percentile in math....in that day, it didn't tell them anything. More likely they thot I was 'lazy'. In one subject but not in another?

 

Anyway, it took me until high school to come out of the slump and apply myself, but I eventually did. Graduated honors from college. [but simply avoiding math is easier than avoiding the language skills.] And tho it hadn't been named yet, my mother strongly believes that I was 'hyperactive'.

 

I still avoid math...I automatically tune out numbers when I encounter them. But my self-perception is intact. I simply explain, if I run into an embarrassing situation, that I have "number dislexia". I don't perceive numbers like other people do. I have no capacity in my brain to do so. I don't even know if they've invented the term 'number dislexia' but it works for me. I should have been taught on an abacus (sp?) cuz the hands-on learning would have activated other parts of my brain making comprehension better. No one knew...

 

A lot has been learned since those 'olden days' and I hope and pray you and your son can find a way to access that knowledge and assistance. There are alternate ways of learning/retaining. You'd be puzzled and amazed by how *I* do the little math that I can't grab a calculator for. Kinda weird and sometimes laborious but...it works for me. He's got the extra challenge to find his own way. Tell him an old grma says he'll find his ways of doing things if he keeps trying!

 

MtRider

 

edited for spelling [while one of the language arts, it was also problematic for me. I've noted the MS has made both math and spelling much worse.

Edited May 12, 2012 by Mt_Rider

[sassenach]

its called dyscalcula in math, MtRider, sounds like what you probably have... I have it, nobody cared to notice. I also have LD stuff I didnt get identified until age 31 , deals with multiple concepts and math type logic. Also short term and long term memory recall problems. They were amazed I could do mileage averages and do basic arithemetic at all.

I started having problems in division ... got a student tutor who I really couldn't stand socially.

Was sick too much in jr high with bronchitis from swimmers ear , new math was prevalent then and it was all ignored by my parents and teacher. Getting through basic algebra was a terror for me but I managed in it in college the first time but a 5 week online course for online U stuff is beyond me.

I was finally tested in college after the navy when I couldn't easily memorize or fathom geometry and trig , luckily the brilliant teacher was kind enough to suggest testing.

 

Now I cant even remember how to do decimals or fractions hardly and am still hoping the local drug store will come up with some grade school books on those so I can review.

 

What bugs me is so many of the things that take this higher math are things I actually understand without knowing all that stuff .....math is greek to me, what can I say but i understand concepts and can zone in on alot of stuff that seems abstract, like physics and chemistry , can understand the processes and even come up with explanations on how the stuff works, lol... if I had been able to grasp math, how far could I have gone.

BTW the top physics guys in the research labs for the military said to me they even use cheat sheets for formulas now, even had a binder of them, to do their various tasks with it as they got older and away from the school environment.

 

I know it took my son about five times the average study to make it through calculus and such at the naval academy. They will tutor them like crazy but if they diagnose an LD problem, they have to discharge the midshipman. If they can get through the courses they can stay so they bend over backwards trying to help them.

I think my mom had problems with the concepts and sequencing like I did. My son had some issues too but his steel trap memory skills helped him memorize it with a lot of effort. Unfortunately they forced him into electrical engineering because of his avionics background while enlisted but he prefers mechanical engineering although he got a slow start on mechanics because he refused to get greasy as a kid, although I know he liked building mechanical stuff that didn't require grease. ( he has since gotten over that somewhat).

Dyslexia comes in many forms. I know too many adults our age or retired age that cant read because of it. You tend to get alot more help and there is more help available now because its been studied and things applied today, although many areas are hindered by budget problems and often rural areas just do not attract the specialists needed.

 

I urge anyone with kids with dyslexia to keep advocating and trying different things and doing their own research if they have to. There are many good books on it by now and probably have some good suggestions.

 

I know one form of dyslexia responds to using a yellow protective sheet over the page being read. My brother has that type. If you never tried it, its worth a try. It seems to clarify and reverse the way the brain reads the letters or word backwards for some who have dyslexia.

I think that may also work for those with glare sensitivity too.

[Jeepers]

I have dyscalculia too. I was punished through grade school because I simply could not learn the multiplication tables. I had to study them, secluded in the bathroom, for a half of an hour every day after school. When I learned them, the punishment was over. I never did get past the 6x... Decimals and fractions still elude me.

 

A N M,I feel so bad for your son. I know how it feels to feel dumb. Although I did well in other areas, a sixth grader now probably has better math skills than I do. And studying and determination has little to do with it. I've tried as a child and as an adult to conquer math and it just isn't going to happen for me. I can learn just enough to pass a test and then it magically disappears from my brain. I cannot retain it. I was so glad when I learned there was a valid name for it.

 

As it turned out, some of my cousins have the same thing. We also have a mild form of AADD. I tried meds, both OTC and prescription and nothing helped.

 

Your son is so lucky to have you behind him. He may not realize it now but when he is an adult he will!!! I hope he knows that everyone has some sort of 'learning disorder.' Some are more obvious than others but none of us are perfect no matter how hard we try.

[gofish]

Been there done that . I'm not dealing with dyslexia or ADHD but there are learning problems with my Son. The 504 plan is OK but I feel the IEP is better.

This might help.

http://www.wrightsla...o/iep.index.htm

 

http://specialchildr...ht/getanIEP.htm

 

http://www.sheknows....hild-special-ed

 

http://www.additudem...rticle/711.html

 

 

It might take more time but make the school do the evalvation. START NOW AND KEEP AT IT !!!!! Call, keep a good notebook every time you talk to them . Get names and dates.

TAKE SOMEONE NOT EMOTIONALLY INVOLVED WITH YOU TO MEETINGS. Take notes. Take notes Take notes.

I SOBBED when I signed my Son up for kindergarden. They just kept handing me tissue and telling me everything was going to be OK. But I knew better.

It took us untill 5th grade to get him the help he needed.

They did the evalvation in 1 st grade and told us he didn't qualifie for help. In 5th grade he got a teacher that was a social worker before she started teaching. She went out on a limb and bypassed the special ed department and went to the school supperintendent to ask for help for my Son. Lets just say it was not a popular move on her part but it did get us help.

Edited May 12, 2012 by gofish

[windmorn]

The color over the reading material can work for anyone, even if they don't have a problem with reading. The different colored background makes it easier to see and causes less eye strain. My favorite color is pink and a shade of pink is what I determined works best for me, but I don't use it. I'll have to ask my speech therapist friend what the website is to test for a color without buying things. You could do it on your own, by using a word processing program and changing the background color. You can get different colored overlays at some school supply stores and test them in the store. This is probably a better way because the color is true and the lighting is more like what you would normally use. The ones on the computer can give you an idea, but they aren't exactly the same as what you can buy. Another cheap way to test is get colored see through plastic 3 ring binder dividers. My friend did this once for a language disability child she was working with. Target sometimes carries the dividers in the $1 section, especially at the beginning of the school year.

 

Dyslexia alone will not qualify you for an IEP in most places, as it's considered a classroom/school level problem. It has to be accompanied by a special ed serviceable diagnosis. The speech person in the district maybe be able to test for language disorder or ADHD may in some circumstance help in that qualification. I'll have to ask my friend what the name of the book was I gave her. It's about dyslexia, dyscalculia, dysgraphia (problems with fine motor coordination and writing), adhd and a few other diagnoses being all related and caused by the way the brain develops in the 3rd month of development and there was no controlling it if I remember correctly. It says there's never one diagnosed without at least one other diagnosed. One activity that the book suggested was having a child walk up and down a few stairs backwards. Somehow it retrains the brain. The book didn't go into a lot of detail on what to do because he wanted people to go to his clinics, but it was informative on the cause of the problems and how they are related.

 

Another thing I learned when I worked in a school for helping dyslexic kids was to use mulitsensory techniques -

 

letters made out of sandpaper for them to trace with their finger

trays of salt or sand for them to write in

moving while learning

letting them stand if they need to - ask for a seat at the rear of the room so they can

let them fidget with a quiet toy like a stress ball as long as they aren't throwing it - one teacher thought I was crazy but the complaints about the child sure went down

let them doodle while the teacher talks

use taste to help them associate the letters to - this one I never saw work and have wondered about many times I know I was told something about candy letters

let them write cursive - it can't be written backwards

give them oral testing - for some dyslexic kids it's not that they write/read backwards it's that they can't get it from their heads to their hand to the paper

do jumping jacks or other movement as they learn times tables

computer games sometimes work well with them

using pictures to help them remember

let them draw a cartoon as a memory aid

teach them organizational techiniques - how to organize a binder, note cards, graphic organizer - google this one as there are too many to list here

teacher and parent initial an assignment book to make sure it's all getting written down and done.

 

 

As I remember other things I can post them. It's been a couple of years and I've only had one cup of coffee, so my recall is a little so this morning.

[Mt_Rider]

Wow......just WOW! There really is a group of us who don't handle numbers like most people do?

 

 

Thank you all for the NAME of what I've dealt with for .....lots of decades. Dyscalculia. I just called it number dyslexia cuz as an adult, I recognized the similarity to the reading type dysfunction. Wow....I'm kinda blown away. I've never met anyone who could relate to the 'number thing'.

 

I could understand the concepts of math but couldn't do the arithmetic. I actually have some really different ways of calculating and it's all based on multiples of five. Cuz that was the only part of the multiplication tables that would stick with me. Yeah Jeepers. I know the learn-and-then-POOF! It's gone. And I could memorize the 'twins'. 2+2, 3+3, 4+4, etc. So 8+7...is sixteen minus one and thus: 15 OR it's fourteen plus one. Either way. Don't ask me how that's something my brain can compute quickly. 46+12....round the 46 to 45. Round the 12 to 10. So far we have 45+10=55. Then pick up the extra 3 that I eliminated temporarily. 58 THAT is simpler for me.

 

I can still see my high school math teacher [algebra and geometry] holding his head in his hands as I explained HOW I got the right answer...the "wrong" way. But it was RIGHT for me.

 

And believe me....MS exacerbates the problem. Likely aging-focus-issues do too. That's why I'm having more and more spelling issues but they can be so bizzare!! [and I think I spelled that wrong too. ] When the MS really got noteworthy [we can trace my MS syptoms back to age 7 ] I began to do things like spell 'of' ..."ove". Over and over, tho I'd catch it and correct it. And I'd look at something I'd written and it had letters missing or all the letters were there in the wrong sequence. Or a letter from the last sentence ended up hooked to the next sentence. Then there is a classic MS-Word-Search. The brain comes up with something close but not *quite* the correct meaning..often starting with the same letter. I'm great with vocabulary so that bothers me a lot. I need the word I'm looking for, not something close.

 

 

Ah...you all have made my day. Can't wait to tell my mom about this. It's always been quite a mystery and today...today I have found out I wasn't the only one with this particular dysfunction.

 

 

MtRider [....may this generation of children be able to avoid what we went thru.... ]

Edited May 13, 2012 by Mt_Rider

[Jeepers]

Mt. Rider, I usually do the 5x... and then add on from there too. There are some 'times' that are easy for me because they rhyme. 6x6 is 36. 6x8 is 48. 9x9 is 81. Okay, that last one may only work if you have a southern accent.

 

And I used to say I had number dyslexia too.