Wednesday, October 22, 2014

Susan Barton

My mom listened to the Jan Mickelson WHO Radio show show as promised to hear the interview with the "reading specialist" he was having on.  She eagerly reported back to me that this woman, Susan Barton, sounds like she really knows her stuff!  My mom really wanted me to sign up for the class she was holding the next day.  I vaguely remembered back to another seminar I had once attended about children's behavior.  Ultimately, it turned into a sales pitch, but because I had no other plan at this point, heck, Nick and I signed up for her presentation.

When we arrived at the class I was happy to see no tables full of products for sale.  There was a booth in the back with a sign of the sponsor which was Decoding Dyslexia- Iowa  There were quite a few people in attendance.  As the presentation started Susan introduced herself and stated that we were going to talk about the most prevalent, possibly most under recognized reading disability in our country- dyslexia.  She started with giving a picture of an adult today who grew up with untreated dyslexia.  About five characteristics in Nick leaned over to me and said "I think I might have this."  I gave him a reassuring nod and said "You do."

Susan then said that all people can read up to a point.  Most children can use their memory (not decoding skills) to "read" up until about 3rd grade.  At that point multisyllabic words are introduced and the vocabulary grows so quickly that simply memorizing words as a whole begins to fail.  And then she said this "Children who are identified into special education for reading failure by 1st or 2nd grade have the most profound cases of dyslexia."  And I cried.  In a unknown church with hundreds of strangers around I just started to cry.  She just told Zach's story.  He was in 1st grade and he had been identified for special education just the week prior.  In retrospect I don't know why I cried.  She said at the beginning of the program that she had solutions, but in that moment all I heard was that Zach likely has a profound reading problem.  It all got really, really real.

The next two hours I was completely engaged and engrossed.  Susan told the story of how she went from being a computer programmer to an adult literacy advocate to now a dyslexia expert because of  her nephew Ben.  Ben, like Zach, qualified into special education at a very young age.  What happened to him after that was tragic.  He was put through 8 years of special education, more reading programs than you can count, and his parents spent thousands of dollars at tutoring centers try to help Ben learn to read.  Yet, in high school he was still reading at a 2nd grade level.  This bright, happy child transformed into a young man with no self esteem that had been through the wringer.  His school held an IEP meeting and advised his parents that it was time to face facts.  Some people just are not meant to read.  So, with the few years of schooling he had left they advised getting him into a trade.  Preferably one that did not utilize a lot of reading so that he could earn himself a living after high school.  That news did not sit well with anyone.  His parents were despondent but Susan wasn't going to take this news lying down.  Through a series of adventures and misadventures she ended up volunteering as an adult literacy volunteer and teaching illiterate adults how to read using an Orton Gillingham reading approach.  She took this information back to her family, trained her own mother how to tutor Ben, and after just a few months Ben was reading at a 7th grade reading level.

Susan continued on to show examples of students work that she had seen over the years because kids with dyslexia have a series of highly predictable reading mistakes and often you can see highly predictable mistakes in their writing and spelling, if you know what to look for.  She talked about myths about dyslexia (people see words backwards, only boys have dyslexia, you cannot diagnose dyslexia until at least 3rd grade) and then the facts.

Susan also listed out the warning signs of dyslexia.  She gave about 30 symptoms.  She reiterated several times that if your child has 1 or 2 symptoms that she listed, do not worry, it is likely a normal stage of development.  But if your child has 3 or more of the symptoms she lists you should consider having them tested for dyslexia.  She proceeded to list off the symptoms and Zach had all but a few.  Well, I'm sold.  Whatever you are selling Susan Barton, I'm sold!  But there was no sales pitch...

Did you know that NIH (National Institutes for Health) began studying dyslexia in 1978?  They have multiple research centers throughout the country dedicated to dyslexia.  You might have heard of some of the places before like Yale or John Hopkins or Mayo Clinic.  NIH is the same group that gives us statistics like "heart disease is the number one killer of women in the US" and "colon cancer is the 5th most prevalent cancer in the US."  Things we accept as fact, things we take action on every single day because they have the research to back it up.  The NIH has years and years of research on dyslexia, it's cause, and it's known successful remediation yet the education institution, as a whole, has not taken action with all of this knowledge.

Part of the NIH research includes fMRI scans (functional MRI imaging) where they put children into an MRI machine and ask them to read.  When the non-dyslexics read their scan will light up in 3 different areas of the brain, predominantly on the left.  When the dyslexics read their scan will light up in 2 different areas on the left (1 area very faintly) with a long detour through to the right side which isn't the side of the brain that is most efficient at reading.  If that isn't proof enough (you can literally SEE dyslexia) the real magic is--- after receiving proper remediation through an Orton Gillingham based program the brain of the dyslexic will function (proven by follow up fMRI imaging) more like the brain of the non-dyslexic.  Remediation builds neuro-pathways which in turn improves the dyslexic student's ability to read, write, and spell.

At the end of her presentation she gave a list of different Orton Gillingham programs that could be used to teach a dyslexic student to read.  She gave a list of about seven.  She has made her own system, yes, but I am not exaggerating at all when I say she says "Sure, I like my system, but use ANY of these.  If you can get your child access to ANY of these programs, please do."

Now- here is my disclaimer- this is my blog.  This is not a research paper.  I have spent months researching the above information beyond what Susan Barton said at her seminar.  Everything I have read indicates that it is all accurate.  But I did not cite sources because again, this is my blog.  If you want more information please feel free to investigate.

Some sites I suggest are:

www.interdys.org
www.ddia.net
www.dys-add.com
www.nih.gov
www.mayoclinic.org
www.understood.org

If books are more your style I suggest:

Overcoming Dyslexia by Sally Shaywitz

I left Susan Barton's program full of excitement and hope.  I could not wait to share everything I had learned with the school...

Zach's Story

From the time Zach was young I knew he was different than his siblings. He always liked to line things up. Toys, books, movies, crayons, it didn't matter much what it was, it could be organized better! When Zach was two he and I were working in the attic after the holidays putting stuff away. He disappeared for a while with a bag of gift bows. When I came out of the attic to find out what he was up to he had made a PERFECT circle of bows, about 8 feet in diameter, and was sitting in the middle just beaming. You could not have made a more perfect circle if you had a pattern, which he did not. And he was TWO.

Zach was always happy and easy going. Like most kids he was thrilled when it was time to start preschool. He loved school and happily ran in every morning excited to start a new day of learning. He learned to write his name. He learned to count. He learned to group objects. He learned how to sequence a story. One thing that I remember thinking was odd was that he could write "ZACH" and he did on everything. However, if you asked him how to spell Zach he just looked at your blankly. Sometimes he might say "Z" but never in all of the times that he had written his name could he correctly identify those four letters. He had a wonderful teacher, Michelle, who towards the end of the year asked to meet with me. She gave me Zach's assessments from the beginning of preschool. They had screened the kids seeing how many of the 52 letters they knew by site (26 upper case, 26 lower case). It appeared that Zach had started a bit behind. He recognized two or three of the 52 on his first assessment. On his last assessment, after months of instruction on the alphabet, he still only knew two or three of the 52. Oddly, they were not the same two or three he knew coming into school and none of them were the letters of his name.

Michelle admitted she was a bit perplexed by him. He was socially wonderful and had mastered every other skill that the kids were evaluated on when they were checking for kindergarten readiness. She told me she talked with the AEA consultant that visited the preschool for other children, and they told her if he had all of the other skills mastered, she would recommended regular kindergarten for Zach. Being deficient in only one skill did not preclude him from a normal classroom placement. Well, I thought to myself, if he can do everything except recognize letters by site, then maybe he just can't see. I took him to a pediatric ophthalmologist and it turns out his vision was excellent. Coincidentally, at that time this was all unfolding I had an AEA early childhood specialist coming to my house to work with my youngest, Zane, for some missed developmental milestones. One day after she finished up with Zane I asked her about Zach. I told her what the preschool had seen, I told her that I took him for a vision check, and I wondered if she had any input on the situation. I felt reassured when she said "Boys sometimes take longer to learn the alphabet than girls. We don't become too alarmed unless a boy student is entering 2nd grade and still isn't recognizing their letters by site." Whew, what a relief! Zach was on to kindergarten without worry!

In Kindergarten children participate in reading screening evaluations. At the time our district was using DIBELS. Zach's scores were always below benchmark. But, I expected that knowing that he didn't know his letters. He went through kindergarten seamlessly. At his end of the year conference I asked about his letter recognition because he still did not know his letters by site. Mind you, this is after two school years of formal instruction on the alphabet. He knew maybe half of the letters now, but not reliably. His kindergarten teacher gave me some suggestions of things I could do at home to help him with alphabet recognition. So we filled our summer with an early childhood computer game that centered on letter recognition and Leap Frog Fridge Phonics. He did seem to know most of his letters by the time he was going into 1st grade.

1st grade started out pretty well. Zach's DIBELS scores were still below benchmark, but he happily ran into the building everyday eager to learn. After a month his teacher started sending home site word drill sheets for us to do at home. The sheet was essentially five different words written on the sheet several times a piece. So, the sheet had a total of 40 words on it, but they were the same five words over and over in a random order. At the bottom of the sheet was a spot to write your child's time in. They were to do it three times over the course of the week with the idea being they would get faster each time. Red flag #1 for me was that Zach would resist doing these sheets. My laid back, anything goes kind of guy was complaining when I said we needed to do them. Red flag #2 was that he treated each word as if he had never seen it before. So if it was "at, this, orange, ball, go" and we sounded all of those words out- he would then get to the next set of the exact same words and look at them as if he had never seen them before. Red flag #3 was that the spot where you were to record the time it took them was labeled "_________ seconds". So I would have to squeeze in "8 mins, 24 seconds" in the line. Lastly, Zach's times sometimes went down throughout the week, but typically were all over the place and never did they consistently trend down as they were expected to.

His 1st grade teacher watched him struggle and after winter DIBELS when he was even further below benchmark she asked to meet with me. He had been in reading intervention 20 minutes a day five days a week for the entire year thus far and was still not making progress. She felt he should be evaluated by the AEA to see if he might have a learning disability. I gave my consent and the eight week evaluation began. At the end of the eight weeks there was a meeting to discuss the findings. Zach's scores were discrepant enough from his peers that they were recommending special education. This would be 90 minutes a day that he would be pulled out of his regular classroom and work in smaller groups in the special education classroom for reading. Now, a few things struck me odd about this "IEP" meeting. (IEP means Individualized Education Plan- for the lay person, it means the kid is going to be put in special ed). First, at this meeting where we discuss Zach's evaluation there was a bunch of scores they had compiled to show how low he was compared to his peers in his class and presumably compared against other 1st graders in our state, the nation, heck, I don't know. Some other 1st graders from somewhere. I think. (Enter the system problem #1- get a group of teachers and AEA people together and put them across the table from a worried, confused, sad parent and see how much that parent really understands about what is being said). But aside from compiling scores, there was no evaluation; no IQ testing, no testing to determine what is causing the learning difficulty, nothing. So you leave with some papers that say you child has a learning DISABILITY and needs special education. To me "learning disability" is a pretty broad term. I want to know WHY he is not learning. Is it expressive language disability, receptive language disability, or is he just slow? Also, when it got to the area on the IEP where you fill out the students strengths this team of education professionals simply looked at me and said "What does Zach like to do?" So in his "Individualized Education Plan" it says that he likes to garden and likes Pokémon cards. Now, while both of those things are true, how in the world is that relevant to why my child cannot read or remotely helpful in determining a method to help him learn to read? The simple answer is... it's not.

That evening I was commiserating with my mom about the events of the day. I had my Parent's Handbook of Rights from the Department of Education which I intended to read. But honestly, I was in mourning. All the hopes and dreams I had for this amazing boy were now a big blank question mark. What if he never learns to read? What if kids start making fun of him because he is going to a special ed class? What did I do wrong? Did I not read him enough stories? Did I not take enough action? They told me in preschool they were worried, but I just let it ride for TWO years trusting the system and the experts. How could I have failed him so miserably? My mom reassured me that everything was going to be ok. I hadn't done anything wrong. We could figure this out. And then she said, as she so many times does, "The other day on WHO radio... they said a reading expert was coming to town. I think she's having a free class about reading too. I will listen to her and let you know what she says." And little did I know at the time, that was nothing short of divine intervention...

Friday, October 21, 2011

Comeback? Ha.

And a few days later I will pick up where I left off. Zach is doing much better and hasn't been too much of a bear on the steroids. Tomorrow is the last day of that, whew!






Bella- Bella-Bee has been my low key kiddo so far this year. She LOVES school and adores her teacher this year. Bella is the ultimate big sister. It is hard for me to realize that she is 8 already. Time has flown by so fast. She is still a big fan of shopping (for ANYTHING) and enjoys projects- like sewing or cooking.






Christian- Ah, Christian. He's started out the year rough with a broken ankle and surgery to fix that. This caused him to sit out of his favorite sport- wrestling- after he had a really strong start to his season. Too much time on his hands led him down a shady path for a while, but he has worked hard to turn some things around. He has worked really hard in football this year and is a great defensive guard. He is putting forth a lot more effort in school and is seeing the benefit to that. Slowly, slowly I think he may start to realize his full potential. We have all known it was there for years, but finally, he is starting to BELIEVE!






Nick and I- eh. We work, we clean, we change diapers, go to sports... all those parent things. Nick did graduate from his electrician schooling this summer. I am anxiously awaiting him taking his licensing exam.






This year started out with stress beyond belief. I am happy to report we made it to the "other side" and the view from here is great. We are blessed.



Tuesday, October 18, 2011

Trying to make a comeback

Well, hello. Long time, no posts. There is something about this last year that has just not been condusive to blogging. Last 12 months in quick review: Bella ear tubes, Zane ear tubes, Christian ankle fracture and surgery, Zane surgery, Nick graduated, we moved (twice), and last but not least--- did you know we have FOUR kids? Whew! To kick things off I'll start with a quick blurb about everyone here:

Zane- This toddler is a ray of sunshine. He can climb ANYTHING. Up until this last weekend you would rarely see him without a smile on his face. Now he has a smile 99% of the time, but has discovered frustration. Zane's current expression of frustration is a squeal/shriek combo with a scowel. We have seen this the most when he tries to take something from you (food, Wii remote, toy) OR when you try to take something from him he shouldn't have (Sharpie, whisk, toilet brush). He is a big little man, working daily on closing the gap between he and Zach on the scales!

Zach- It is so hard to believe he wasn't much older than Zane's age when I started this blog. Now, he is rapidly approaching his 5th birthday! Zach loves preschool and is always excited to arrive there in the morning. Last winter he struggled with a cough off and on and that has began again with the cooler weather. I took him to the office today and he will be trying an inhaler for his lungs during the winter months. Speaking of Zach, he's up from his slumber crying now because he cannot stop coughing. I better go fire up the nebulizer and help a buddy out.

To be continued...

Sunday, July 31, 2011

We are still here





Would you like some cake?

Monday, February 7, 2011

Sleepless nights

Between ear infections, stuffy noses, and coughs Zane has had a rough time getting the all night sleeping thing down. After his ear tubes were in he slept great for about two weeks. That was followed by two weeks of terrible nights. He took a little rest and let us have about a week of good sleep and last week the up several times problem returned. And now, after all his pain and suffering, Zane proudly presents... two teeth.

Tooth one is pretty visable, tooth two is in the "Can I feel anything?... Ouch, there it is!" stage.

Sweet dreams little baby...

Sunday, February 6, 2011

2011--- so far!

Adjusting to being a mom of four that works full time isn't as easy as it sounds...

Things have been wild and crazy, but good. In the past few months we have been super busy.

Christian's football season went well. His wrestling season started out great, but came to an abrupt end with an ankle fracture that had to be surgically repaired. He has been bored to death with his cast on since the first week of January. Only 3 more weeks before he's free of it. Of note, this cast has not detered him from ice fishing this winter.

Bella is doing great. She had a fun season of basketball. This spring she has decided to try soccer instead of softball. Then this fall she wants to return to dance class. In December she had to get ear tubes due to some hearing difficulties, but bounced right back from that little procedure.

Zach, well, he's a 4 year old boy. He spends his day playing with dinosaurs, coloring, and trying to perfect his Wii skills on Mario. His November birthday means no kindergarten this fall, but instead he will go to preschool 4 days a week. He is adjusting well to his role of big brother. Zach has also been blessed with health this winter. A few colds, but no surgeries- he only kid without surgery under his belt this winter. (KNOCK ON WOOD!!!)

Zane is growing so fast. I cannot believe he's already half a year old! He also had to get ear tubes in December due to persistent infections. I am glad we took this step with him, as he more often than not has infection draining from his ears. If that was caught behind his eardrum, he would be one sad little baby. Zane is amazing- he is beaming and smiling 99% of the time. We have been blessed with all good babies- he is the happiest yet. Happiest does not mean the best sleeper, but happiest none the less!

Nick started his last semester of school last week- he should be done in May. Be on the look out for a party invitation! This is like graduating from college for him so there will be some serious celebrating to be had!

Me? I have been just treading water to keep up with everyone else. I really wish I had a maid so that I could spend more time snuggling little bodies, snapping photos, and relaxing- but where would the challenge be in that?

In the upcoming weeks we are looking forward to thawing out. Zane will be having another surgery later this month. Please pray for Zane's safety and a positive outcome. While this has me concerned please do not mistake, I am eternally thankful for all of our family's medical issues being minor and my children being healthy.

If nothing else, it's going to be an interesting year!