Wednesday, April 25, 2012

Open Letter...

Dear Mr./Mrs. Legislator, Educator, Principal, Guidance Counselor or Anyone who will listen...

Do you have children, grandchildren, neices or nephews? Could you imagine picking them up from school and asking them about their day only to be met with downcast eyes or tears because once again they failed that test (very badly) that they studied so hard for? What about having to repeatedly try to convince he or she that they are not dumb or stupid? These are only mild scenarios compared to what we, parents of dyslexic children, go through here in MS.

Our children hold great promise, but their ambition has been quickly tainted by their inability to compete and/or perform in the classroom because they are unable to produce results in the way it is expected. Our kids can not participate adequatley in the classroom because they are not playing on an even playing field.

As parents we have called teachers, principals and guidance counselors asking for help only to be told "Mississippi doesn't recognize dyslexia as a learning disability....there's nothing we can do." Many times that is the end of the conversation. There are no offers of even helping us find help. We are left on our own to keep our children in the game, when they want nothing more than to give up.

If Mississippi is concerned about literacy, then we as a state should take a very proactive approach towards Literacy and early interventions involving all forms of Dyslexia. It is very unrealistic to expect our children to perform well on state mandated tests when they look at a one page vocabulary test and watch words and letters run all over the page. Should our children be punished with bad marks because they can't match twenty vocabulary words on paper, but if split up they can match five at a time? Should they be punished because they experience multi-sensory overload? Right now they are.

We are begging anyone who will listen....please help our children. If you are a legislator can you help us with the law? If you are an educator and you recognize signs of dyslexia can you educate a parent on avenues that they may take to get help? If you are a guidance counselor, principal or pyschometrist could you offer other avenues for a parent to explore in order to advocate for their child instead of just shutting them down with "MS doesn't recognize dyslexia...."

Our kids have a future and they have dreams. They should count.

Saturday, April 14, 2012

Mississippi, Dyslexia and What I Just Learned

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.