Dyslexia - part 2 (What were the early signs?) / Dyslexia

Dyslexia - part 2 (What were the early signs?)

You might be wondering.... "Are my child's struggles with reading typical...or should I be concerned???"

That was what we spent years questioning. We noticed that our son was struggling with reading when he was in kindergarten and first grade....but was it something he just needed more time to develop? As a teacher, I knew that kids develop their reading skills at different rates and that it is typical for boys to develop skills later than girls. So, in kindergarten and first grade I was concerned for my son, but wasn't on high alert yet. I knew that he was still developing his literacy skills and thought maybe he just needed more time.

Then second and third grade came. His reading skills weren't catching up to his peers and we started to get more concerned. Our son was in an unusual situation though. His teachers weren't overly concerned. He was a well behaved kid in school, and he had some really good coping strategies. He knew how to blend in with the other students and not draw attention to himself. His intellectual ability was high enough, that when he was reading silently he could pick up enough clues about what the story was mostly about that he could answer many of the questions on reading tests. Unless teachers were actually sitting down and listening to him read the words on the page...they had no idea how much he truly struggled with reading.

Our son was in the "gray area." He wasn't struggling enough to be flagged by teachers as a struggling reader. Due to this, he got very few reading interventions through the school and was able to skate through the majority of his school career under the radar. Even at this stage....with a diagnosis of dyslexia....most of his teachers are shocked to hear that he struggles with reading. He is good at hiding it. That's what I have noticed about my son....and other older students that I work with.

They know that they struggle with reading....even when they try their hardest....and they are embarrassed about it. So, they find ways to hide their struggles and blend in with those around them. Research tells us that about 1 in 5 students have dyslexia. In a typical classroom of 20 students that means about 4 of those students could have dyslexia. Looking around the classroom...which 4 students could it be? Is it the ones who obviously struggle and have been receiving help all along....or is it someone that is hiding it well, and struggling in silence, embarrassed that they just can't seem to "get it." That was my son. Struggling in silence for all these years. Wondering why he couldn't just "get it" like the other kids. Thinking that maybe he was just stupid.......

That was the biggest "ah ha" moment for me in this whole journey. I asked my teenage son how he felt about getting a diagnosis of dyslexia. He told me.... "Well, at least I know that I'm not just stupid!" That broke my heart.....

How many kids are we failing, that are trying their hardest, but just feel like they are too "stupid" to figure out the whole reading thing. Throughout my journey in becoming certified as a dyslexia specialist, I have come to some very important understandings.

1. Dyslexia is not curable. It is the way that your brain processes information, and not something that you can "fix."

2. Children (and adults) with dyslexia can ABSOLUTELY learn how to read well. It will take longer, and it will take a structured approach, but it can (and should) be done!

3. Early intervention is essential. The golden age to intervene is kindergarten and first grade. (It takes about 4 times as long to fix these same reading problems if intervention is left until they are older).

4. Better late than never! My son is now finishing his sophmore year of high school and will begin his official "intervention" this summer once I get a little more training through my dyslexia classes. He will spend his junior and senior years tutoring with me at home....because it is not too late. He CAN....and WILL... learn to read more efficiently because that is what he (and all students/adults) deserves.

Looking back....the warning signs that we should have acted on:

Read with caution.....

If your child is in preschool, kindergarten, or first grade....I wouldn't rush to get a diagnosis of dyslexia. These are the formative years when children are still developing and it very much depends on what kind of literacy experiences your child has had up until this point, and what kind of instruction they are receiving at the beginning of their schooling years.

Keep in mind....

Literacy starts at birth....not at school. What you do during those early years matters and makes a difference!
Structured literacy matters for students who struggle. Find out what kind of instruction your child's school is providing. Do a quick Google search on structured literacy and see if it matches what your child's school is providing.

But....

If your child is older and still struggling with these things it may be something you want to look into.

Looking back, I wish we had gotten a formal diagnosis when my son was in 3rd grade. That was when I was pretty confident that we were probably dealing with dyslexia.

I think I'll do a whole different post on what to do if you want to pursue a diagnosis of dyslexia, because it isn't actually that easy, especially in the state of Wisconsin. Even now, with a diagnosis (that was very expensive to get), we don't have a ton of options for tutoring for my son because the wait list is so long for free tutoring and our other option is paid online tutoring due to our rural location.

The warning signs (for my son).....

Age	Concern:
Infant years	None...
Toddler years (2-3)	Speech concerns....	Around age 3 my son began to stutter. With a little research we learned that this was typical and not to be alarmed at first and after awhile we didn't notice it as much. (We now know that this was due to his language processing deficits.)
	Attention concerns....	We began to notice that our son appeared to be hyperactive. He had trouble sitting still and couldn't seem to follow a small list of directions without needed lots of reminders. (This was assessed during his IEP at 4 years old and it was determined that he only showed these symptoms at home...not at school, and did not have ADHD.) (We now know that this was due to his language processing deficits and difficulty with working memory).
Preschool years (3-4)	Speech concerns....	Around age 4 the stuttering reappeared so we approached his doctor and were referred for a medical speech evaluation. He qualified for speech services through our medical clinic and they suggested that we approach the school for speech services which we did. We went through the referral process and attended his first IEP meeting....and to our frustration, our son did not qualify for speech services through the school. So, we followed up medically and did 6 months of speech therapy. This was provided medically and meant that I had to take time off work....EVERY WEEK....for six months to get him the help he needed. Interestingly, when he was assessed for speech, they determined that his vocabulary level was actually above level for his age. This makes sense now. Part of dyslexia is having a struggle with reading that is UNEXPECTED when looking at their other abilities. ie. speaking was hard for him, even though he understood A LOT! After 6 months his stuttering improved and he was dismissed from speech services. I suspect this was due to... Dyslexia - inefffective processing of language
	Academic concerns....	Letter names & sounds - we didn't find out until March of his preK year, but he scored "minimal" in his letter names and sounds. This was very frustrating to find out as a teacher mom, because I didn't realize what the expectations were for preK and we immediately began working on his letters at home. For reference.... - By the end of PreK - they should know most of the letter names (automatically....with little hesitation) and a few sounds - By the end of Kindergarten - They should know ALL of the letter names and most of the letter sounds (automatically...with little hesitation). We now know this was due to... Dyslexia - difficulty learning letter names and sounds
	Other concerns....	Low confidence... After his first day of preK I asked him how his first day of school went, and my heart absolutely broke with his response. My sweet little 4 year old told me that it went good because "I sat at the very back of the carpet with my hands locked in my lap so the teacher wouldn't call on me." During his Christmas program for PreK I noticed that my son had A LOT of trouble remembering a simple line for his part as the "groundhog." I also noticed that when the kids were doing the actions that went along with the song...my son had great difficulty following along and doing the actions correctly. I nowk now this was due to... Processing - not able to process at the speed of his peers Dyslexia - confusion of directionality (left/right)
Kindergarten	Speech/ Language concerns...	My son LOVED to talk!! All the time! But....his stories seemed to meander and never quite get to the point. When he talked he used a lot of general words to describe things like "this," "stuff," "that thing" and I never really new what he was talking about. I now know this was due to.... Dyslexia - language vagness due to not being able to retrieve the specific word for objects from short term memory
	Grammar concerns...	This I totally missed as a teacher parent. My son used to mix up his word tenses and use what seemed like "baby talk" every once in awhile. He used to say things like "I got none homework today," which I thought was absolutely adorable and cute. But then I got concerned when he was still making mistakes like this in 3rd grade. I now know this was due to... Dyslexia - mixing up word tenses, pronouns, and language order.
	Academic concerns....	In kindergarten my kids used to bring home leveled "early reader books" which were pretty typical in most schools back then. Books that were exactly the same on every page except for a word that they had to look at the picture to figure out. (Ex. I see a boat. I see a car. I see a truck.) But, then on the last page the sentence structure would change to something like.... "Do you see the ____?" My son "read" these books very well (by memorizing and looking at the pictures), but never seemed to pick up on the change in sentence structure on the last page. I got concerned when his little sister (about 2 at the time) started picking up on these things before he did. I now know this was due to 2 things.... Ineffective teaching strategy - encouraging kids to look at pictures instead of having them focus on letters and sounds Dyslexia - inability to learn letter sounds and words to help actually read these stories
1st grade	Academic concerns...	There were no concerns from school. He was doing well with his academic testing in school (which was all read aloud to him and untimed) and scored in the 61st percentil by the end of 1st grade. But....I was bringing home my own books from my first grade class to prep for my guided reading groups and I was IMMEDIATELY concerned when he was not able to read the books that I was prepping for my struggling readers. My concerns grew further when I noticed his behavior when I made him read. A lot of avoidance, distraction, and refusal. (ie. hiding under the table, telling me stories or asking questions instead of reading, putting his head down on the book). At the time I suspected this was due to a... difficulty with reading (sight words and sounding out words) I now know that this issue was made worse by.... ineffective instruction (by me and the school)- a continued focus on whole language strategies instead of a structured literacy approach that taught him the phonics sounds and rules that he was not picking up on automatically. I tried to help at home but was not effective in my appraoch for teaching him sight words by just trying to "memorize" flashcards instead of analyzing the sounds in the words to help him build connections.
2nd grade	Speech concerns...	The stuttering reappeared and he was once again evaluated for speech services at school. This time he did qualify for an IEP, but not because his stuttering was affecting his academics....only because it was affecting him emotionally because sometimes kids would ask him why he repeated himself all the time. After about a year of speech services he met his goal and was exited. Though, he stil stutters at times. I now know this is due to... Dyslexia - ineffective language processing and difficulty organizing his thoughts and words.
	Academic concerns...	Finally...the school became as concerened as I was about his reading. But only kind-of.... In the fall all students took their district reading assessments and this time there was a huge difference in his scores. At the end of first grade he scored at the 61st percentile (average). At the beginning of 2nd grade he scored in the 15th percentile (well below average). The main difference was that in 1st grade you listen to a story and answer questions (his strength). But in 2nd grade, they had to actually read the story themselves and then answer questions. (We new reading the actually words was hard for him....but the school didn't realize this yet). Unfortunately, they thought that he just didn't try hard enough because he finished the test so fast so they made him take the test again. He once again scored extremely low so they accepted him into reading interventions...although I don't know if this would have happened if I hadn't been working at the school at the time. I was able to advocate for him that he indeed was having trouble reading the words and we had been concerned about this for some time. I think they still believed that he just wasn't trying very hard on the test since he was able to get good scores on his reading comprehension tests in the classroom. I now know this was due to... Dyslexia - his incredibly slow rate of reading made the long passages on the test seem overwhelming and after trying for a bit he simply gave up when it became too difficult. He was able to show more success in the classroom stories because they were much shorter in length and presented in a more kid friendly manner (bigger print, bigger spacing, picture clues) and he had the time he needed to be able to read and reread parts to skim and find an answer that made sense.
3rd grade	Academic concerns...	After a year in reading interventions, our son had made enough progress that he was exited from interventions (and would go on to never qualify for another reading intervention again through the school). Our big concern was that yes...he could now sound out the words more effectively, but he was still nowhere near being able to read at grade level. At this point, I began to suspect that we were dealing with dyslexia. We discussed the concerns with our doctor and they suggested that we talk to the school. I talked to a few people at the school to just get a general idea of what our options were. We had three options at that time. Put in a referral with the school to have our son evaluated for special education, put in a referral with our doctor to have a medical evaluation done, or...wait and see. Being in the school district, and understanding the behind the scenes of how the referral process works, I knew that if we put in a referral for special education services there is no way that our son would qualify. Yes, he needed help with reading, but he was not struggling near enough to need the intensive support of a special education teacher. We considered doing a medical referral....but had that doubt in the back of our minds. "What if it just takes him a little longer? What if we go through the expensive process of a medical referral and it turns out he doesn't have dyslexia. What if....." So, unfortunately we chose option three...to wait and see. That was absolutely the WRONG choice and I would not recommend it to other parents who are concerned. What I now know... If we had gone through with a special education referral with the school, most likely he would not have qualified for special education services. BUT...we would have gotten some concrete evidence through the testing process that our concerns about his reading were valid and yes, he did need extra help. There also would have been a record on file at school that my son was struggling with reading and he needed more support somehow. We wouldn't have gone the next EIGHT years with absoluetly NO supports in place. And...now I know that the doctor could have taken those reports that the school did and used the data in her report which would have cut down on the cost of the medical evaluation that we eventually did pursue.
REGRETS and	WISHES	Looking back, at this point I would have put in a parent request for an evaluation for special education. (Did you know that is your right as a parent? You can request an evaluation for special education testing at any time and the school is (by law) required to evaluate. This is due to IDEA (Individuals with Disabilities Education Act). This is a federal law and has been in place since 1975 in some form, although it has been amended a few times to result in its current form. Looking back, if I had requested this school evaluation in 3rd grade (which I'm still sure he woulnd't have qualified for services) I then could have taken the results to our medical doctor to get a medical diagnosis of dyslexia, which would have changed the trajectory of how we approached his struggles with reading. I can't change the past for my son...but hopefully with us sharing our story, it will help other parents to act sooner and not waste as much precious time as we did.
4th-5th grades	Academic concerns...	Our son still hated to read, and would avoid it at all costs. We also noticed at this point that writing was starting to become very difficult. I thought this was just due to his poor spelling abilities which I passed off as probably dyslexia. I now know this was due to... Processing speed - inability to organize his thoughts in a timely manner to be able to get them written down Dyslexia - Difficulty with language acquistion and thinking of the words he wanted to use when writing. "It's right on the tip of my tongue......but I'm not sure." DIfficulty with spelling due to the inability to sound out words and match the sounds to letters. Lack of sight word spelling (mixing up words and letters).
	Strengths...	We began to notice that my son seemed naturally inclined to mechanical things. He was really good at building and creating things. He was a natural problem solver. I now know.... People with dyslexia often show a strong aptitute for other areas, whether it be mathmatical, engeenering, the arts, etc.) Hence the part of the dyslexia definition that says its an UNEXPECTED struggle in relation to the other areas of strength.
6th-8th grades	Academic concerns...	Continued to dislike reading and writing. Struggled with grammatical assignments. Extremely skilled in some academic areas! He was accepeted into the advanced STELM program during middle school and was grade advanced for math and science classes. We now know this is typical for people with dyslexia - to have strengths and "gifts" in other areas beyond reading and writing. I began to share with him that maybe he was one of those who was "twice gifted"... someone who had a disability in one area AND was gifted in another area. In 8th grade I actually brought up a list of dyslexia traits and had him look through it He agreed, that dyslexia was probably a likelihood for him. At that time I asked him if he wanted us to get testing done and decided to wait and see if things got harder.
	social concerns...	At this point our son's best friend moved away, and we began to notice the difficulty he had in making close friends. We thought it was shyness or just not finding the right "people," but we now know this is due to... Processing deficits - It is hard for him to keep up with the speed of a large group conversation and therefore does not really have the opportunity to interact. But, he does better with a one on one situation. I think at this time, low self confidence also affected his friendship building. Trying to find person who could connect with him was hard.
9th grade	academic concerns...	At this point we had a specific incident that took place where my son received a "zero" for an assignement and the reason was purely due to "dyslexia" traits. It was a writing assignment that was timed and he simply couldn't process his ideas in the amount of time given and therefore didn't have time to actually write the assignment. (But to any teacher....it would just look like he hadn't tried). At this point I began to think ahead to his college years and realize that we may need some official documentation of dyslexia to assure that he had the additional time that he needed to process information. I left the decision up to my son, and he decided that yes...he would like to find out if he had dyslexia because he would really like to be able to have more time to do his best work.
	Social concerns...	Same concerns continued...it was hard for him to interact with a group of "friends" and he always seemed to be on the outside, wanting to be part of the group. Again, we now know this is due to his processing speed and it has helped him to know that this is why talking to people is a struggle.
10th grade	FINALLY... testing	Finally we began the process of medically testing for dyslexia. EIGHT years after we first suspected that this was the issue. EIGHT years of missed interventions. EIGHT years of self doubt on my son's part...wondering why he just couldn't do it....wondering "Am I just stupid."

Well...there it is. Our journey with dyslexia.

Now we have....

a diagnosis -- dyslexia
a plan -- weekly tutoring with mom at home (1-2 years is what it takes)
a future -- 504 plan in high school & disability support in college

We wasted a lot of time and we're trying to quick squeeze this all in before he goes to college in two years. But, looking back, I'm not too hard on myself Because, there have been so many advancing in research and education in the last 10 years that I'm not sure we would have known what to do back then had we gotten a diagnosis. I know the school wasn't prepared to know what to do with someone like my son, and I'm not sure that I would have known what to do either.

Now, I have a clear picture of what needs to be done and I'm getting the training needed to make sure that I can help other kids who are in my son's situation, get the help that they need! I am still learning the process (I have 3 more graduate courses to go before I get my dyslexia certificate), but I would love to have a conversation with anyone who is in a similar situation and wondering what to do to help their child.