What do I do if my child is struggling with reading?

Hope you win the lottery.  Seriously.

First, I’m so sorry.  It’s painful.  It’s difficult to have your child’s independent reading sheet look like this.

You begin to wonder what you did wrong and what more you should have done.  Listening to others talk about how their kindergartener is reading and equating that to intelligence or fantastic parenting or how often they brought their child to the library can be heart wrenching , especially when you thought your child was kinda smart, you were and OK parent and you have enough library fines to prove you do in fact visit libraries.  You wonder what is wrong with your child that should be on the road to reading, but for some reason is just not getting it.  The child that you thought was so normal in preschool is suddenly struggling and you feel like you are in the middle of an incredibly slow moving train wreck.

As the parent of this child, you need to find some resources and educate yourself about what dyslexia is and what it isn’t.

The International Dyslexia Association defines dyslexia as:

It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.

Studies show that individuals with dyslexia process information in a different area of the brain than do non-dyslexics.

Many people who are dyslexic are of average to above average intelligence.

A great book is Overcoming Dyslexia.  But beware, if you are like me you can read a book on ANY SUBJECT and start diagnosing yourself, your children and especially…your spouse.  A related website is the Yale Center for Dyslexia and Creativity.  There is a lot of great information here about interventions and advocacy.

Your first resource should be your child’s teacher.  If you have a good relationship with him/her and you trust them, be very honest and share your worries, observations and fears.  Everyone learns to read at different times.  If you child is behind, but making progress, its possible they are just a late bloomer.  But, if interventions have already been tried, no progress is being made, and there are no other reasons why reading should be struggle then its time to look for help.

Another good resource is your pediatrician.  These people see a WIDE range of children and many times have a good feel for when to worry and when not to worry.  Many times doctors have a good educational psychologist they can recommend if this is the direction you should go.

If you live in the Twin Cities, I suggest people contact Groves Academy.  It’s very expensive, but you can trust they are going to do a very thorough job assessing the strengths and weaknesses of your child and helping you come up with a plan.  I believe that going to an educational psychologist is very important for learning disabilities.  Sometimes a neuropsychologist or something who works more in a hospital setting doesn’t have the educational background and they give a different battery of tests and someone with an education background.  #2 was tested twice within months of each other with VERY different results.  The difference came with the educational psychologist giving him a phonemic awareness test, whereas the neuropsychologist left that out.  Without a test on phonemic awareness there is no way to diagnose dyslexia, since this is one of the telltale signs.  Sadly, if you rely on the school district, many times the help your child needs can take months or even years.  Of course, you will still need to go through the school district to get direct help from them, but if you already have an assessment in your hands from an outside source, many times teachers will use this information for accomadations, interventions and to move a 504 or IEP forward.

While all this is going on, continue reading out loud to your child and/or have them listen to books.  There are many ways to read, and reading with your eyes is just one way to enjoy books.  Listening is another great way.  The important thing is that your child views books as something enjoyable and something “for them.”

Another word of advice, find support, especially from other parents who understand the pain of having a child that struggles in school.  Having a child that struggles can be very isolating.  It’s really easy to feel judged, because, let’s be honest, there is a lot of stigma that goes along with having a child that is struggling in school.  If you can’t find someone near you, keep checking back with this blog!  One of my goals about being so open with my journey is to help other parents know they are not alone.

Last word of advice….go for a run.

 

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What are your thoughts on Assistive Technology?

First, let’s define Assistive Technology (AT).  The best information I found was, surprisingly, on the PBS website:

Assistive technology is any device that helps a person with a disability complete an everyday task. If you break your leg, a remote control for the TV can be assistive technology. If someone has poor eyesight, a pair of glasses or a magnifier is assistive technology.

Assistive technology includes many specialized devices as well, like typing telephones for people who are deaf and motorized wheelchairs for people who cannot walk. Assistive technology can be “low-tech” (something very simple and low-cost, like a pencil grip), or “high-tech” (something sophisticated, like a computer). Assistive technology can be critical for the person using it – if you wear glasses, think how hard it would be to get through the day without them!

The federal government recognized the importance of assistive technology for students when it revised the Individuals with Disabilities Education Act (IDEA) in 1997 and again in 2004. IDEA states that school districts must consider assistive technology for any child in special education. That means that for any child receiving special education services, the educational team must ask if there is a device that will “increase, maintain, or improve functional capabilities” of that child. If the answer is yes, the school district must provide certain services:

• a qualified evaluator must complete an assistive technology evaluation;
• if the evaluator recommends a device, it must be acquired;
• and if you, your child or the staff in your child’s school need training to use the device, that training must be provided, too.

There is the information.  It sounds pretty good….yet in my experience it’s a slippery slope.

In third grade #1’s reading scores started on a sharp decline, actually showing that he made backwards progress during the school year.  In fourth grade his teacher suggested he start listening to all the books he was reading (the curriculum is designed around independent reading), telling me this is Assistive Technology and a way that has been found to help children with learning disabilities or children who are struggling.  Because he had always loved listening to books on CD at home I thought, “GREAT!  At least he’ll be looking at a book and taking something in instead of staring into space.” (which was his mode of operation in 3rd grade)  Becuase he was now listening, he really blasted through those books, but did he learn to read better?  No.  Did anyone teach him? No.  He was put in a corner with headphones on during reading where he quietly spend all of his reading time for the next TWO YEARS.  Because I was dealing with so many issues with #2 (and other complicating factors) I wasn’t paying much attention to the fact that no one was actually teaching him how to read (although the school did believe they were fulfilling their requirement for reading instruction).  What did he learn? Reading is not for me and I can only “read” a book if I listen to is, so why even try.  He had no confidence and no competency when it came to reading.

When #2 received his IEP (Individualized Education Plan) the school also wanted him to use a lot of Assistive Technology.  Although its against the law, they suggested I get him an iPad so he could dictate his work to a computer at all times.  There is also an app that will read material out loud.  I was a little smarter the second time around and I asked, “What is your plan to actually teach him how to read and write without the use of a computer?” They had no answer….except that they believed an iPad was essential for his life because they doubted he would ever read or write (I have proved them wrong).  And don’t get me started on the numerous ways I was outraged when they suggested the district could assign him a scribe…an actual person sitting next to him all day long doing all of his writing so he wouldn’t have to.

Assistive Technology, to them, was a crutch.  A replacement for actual teaching.  A replacement for actual learning. An excuse to not do the hard work….for both the teacher and the student.  Would #2 like to play on an iPad all day? Y-E-S!!! Would #1 like to listen to all his books on an iPod? Of course.  Will their mother allow this….N-O!  Sorry children, your mother is stubborn….and a Scandinavian Lutheran with a strong work ethic.

Last Friday the New York Times had a wonderful article, When Helping Hurts.  It focused on the harm that helicopter parenting can do to our children.

“it [help] must balance their need for support with their need for competence. We should restrain our urge to help unless the recipient truly needs it, and even then, we should calibrate it to complement rather than substitute for the recipient’s efforts.”

I think this ties in perfectly when thinking about Assistive Technology.  With #2 I use AT for homeschooling, however, it looks much different than what the school was proposing.  He does use a computer for writing…but he is not dictating into a microphone.  He is typing with Microsoft Word.  He does write with paper and pencil, but is more motivated to write a paragraph when he can type it.  He is delighted when he can look through a list of spelling suggestions and figure out the correct way to spell a word.  He is still doing the work and using the skills he has learned through the Wilson Reading System.  He uses a Kindle to read, but he is still the one reading.  #3 uses large pencils, but he is the one doing the writing.

The main point is this: when dealing with learning disabilities Assistive Technology should be used as an aid to help the child do the learning and work independently.  Use AT to aid in competency, not harm their confidence.  The AT should not be the thing that is doing the actual work.  Any more invasive of AT should be used only as a last resort after many interventions and instructional methods have been tried.

The look on #1’s face when he got to the end of his first book during the fall of 6th grade was priceless.  He looked up and with a big smile said, “I just read an entire book by myself! That is the first time I’ve done that since 2nd grade!”

Don’t use Assistive Technology because the child CAN’T do something….use Assistive Technology because they can.

What is the hardest part about homeschooling?

The answer to this varies.

In many circumstances I am searching for concrete.  To me, there is nothing concrete about homeschooling.  Before #1 was born I was a classroom teacher.  There were a lot of rules that I had to live by and I knew my role.  I had my classroom at the end of the hall where I taught 1st grade. The curriculum, standards, and schedule were dictated to me.  Not all bad.  With homeschooling, for better or worse, I’m the superintendent, principal, teacher, cook, janitor, secretary, community liaison and the parent.  No one is telling me what units I must do, or what due dates there are.  There are no set school hours or calendar.  There are no tests.  No report cards.  No conferences.  No one else in charge of his learning.  I don’t have any idea how many months or years I will be doing this.  These are all good things for the type of learner #2 is, and I am fortunate to have the opportunity to help him in this way. I enjoy the challenge, but it’s sometimes very hard for me to live with the chaos.

Life is still happening.  The house gets continually used (trashed).  #4 is home much of the time doing what preschoolers do, moving things around.  Last year #3 was home too and they moved throughout the house like a pack of wolves just waiting for an opportunity to deconstruct something.  If I had a job in which I left during the day I think it would be a matter of “out of sight, out of mind.”  However, I sit by #2’s side at the dining room table for most of the day with the knowledge that if I turn my head the house looks like this:

and…..

and….

and get ready…..

AHHHHHHHH!!!!

In response, I make my bed every day.

When the day is particulary chaotic, at least there is this.

And you better believe there are crisp hospital corners.

The emotional answer to the question is that it’s hard not being able to spend the time with #4 that I spent with the 3 boys when they were little.  Again, if she was out of the house, it would be different.  However, she roams for much of the day, stealthily flying under the radar.  She is independent, happy and easy-going.  She seems to understand that her brother needs my attention and she doesn’t.  Her preschool teachers said they think #4 should go around with a banner that reads:

“Live and let live.”

Perhaps I have found the principal for my homeschool.

After you got the diagnosis, then what?

Good question.  A lot of tears.  A lot of frustration.  Some swearing.  Temper tantrums. And then finally laying my head down on a table and saying to school administrators, “Honestly, I have never been more frustrated or beaten down in my life.”

Let me explain.

After #2 was diagnosed I was naive enough to think he would get the help he needed to be successful.  Because his learning disability was so severe and he was so incredibly behind where he should be, I knew he would qualify for special education and was looking forward to him getting the support he deserved.  The exact opposite happened….nothing.  A couple months later we did some more testing at school.  The same tests he had taken that summer.  The same tests he had taken that fall.  Now he was taking the same tests that winter.  The testing dragged on and on for weeks….all the while he was falling further and further behind.

They diagnosed #2 at school with some incredibly random LD not-specified-something-because-we-actually-don’t-know-what-we-are-talking-about label…who knows.  I was so angry I put the first draft through the shredder because the school assessment and initial IEP were incredibly non-helpful and vague.  At one of the many meetings concerning #2 I said, “We know the problem.  He’s dyslexic.  We also know how to help.  It’s called Orton Gillingham or a related curriculum.  This is not difficult and we are wasting time as he continues in a downward spiral and falls further and further behind.”  I was met with crickets…silence around the table.  Finally someone said, “Our school district does not recognize dyslexia.”

SAY WHAT?!?!?

I broke into tears.  There is research.  Books.  A local school. Curriculums.  A center at Yale…..all about dyslexia and YOU PEOPLE ARE TELLING ME IT DOESN’T EXIST? You don’t recognize it? Should I introduce you?  You can do a brain scan and see dyslexia….but this school district is telling me its not real?  Is that what they mean? This is a physical difference my child has and that is why he is having a difficult time learning, yet you are saying it’s not real.

Oh the rage.

I was speechless.

And that takes a lot.

Just when I thought I had found answers and we could move forward with a plan for both #1 (who had been privately diagnosed while all this was going on) and #2 I was met with a brick wall….and two children that were beginning to unravel.

Did you have to battle to get a diagnosis?

Yes and no.  It was a very VERY V-E-R-Y long journey.  As I said in the previous post we had known something was going on with #2 when he was in preschool.  I spent 4 years trying to figure out why he was having such a difficult time in so many areas of his life.  He had a kindergarten teacher that I love and trust and she supported all of my concerns.  The kindergarten teacher said that red flags for a learning disability went off for her when she was working with a small group on letters.  Everyone was getting the letters and #2 was still stuck on learning one letter, just one!  Suddenly he put his head down and said, “This is perhaps the most exasperating thing I’ve ever encountered in my life.” His vocabulary was intact (although he had major articulation issues), letter identity was definitely not happening.

We went to the U of M for a test with the pediatric neuropsychology clinic the summer between 1st and 2nd grade (after an 8 month wait).  They tested him for 7 hours and 3 weeks later I received the results.  They put his IQ incredibly low and said he was having a hard time reading because he did not have the cognitive ability to read.  I was furious and heartbroken….not because I believed them, but because I didn’t.  We had wasted almost a year and I was starting to panic.

I had been reading Overcoming Dyslexia and was convinced he was dyslexic.  #2 fit all the signs of someone who is dyslexic.

According to The Yale Center for Dyslexia and Creativity the signs in kindergarten and first grade:

Reading

• Reading errors that show no connection to the sounds of the letters on the page — will say “puppy” instead of the written word “dog” in an illustrated page with a dog shown
• Does not understand that words come apart
• Complains about how hard reading is, or “disappearing” when it is time to read
• A history of reading problems in parents or siblings.
• Speaking
• Cannot sound out even simple words like cat, map, nap
• Does no associate letters with sounds, such as the letter b with the “b” sound

Strengths

• Curiosity
• A great imagination
• The ability to figure things out
• Eager embrace of new ideas
• Getting the gist of things
• A good understanding of new concepts
• Surprising maturity
• A larger vocabulary for the age group
• Enjoyment in solving puzzles
• Talent at building models
• Excellent comprehension of stories read or told to him

My pediatrician found an educational psychologist and she tested #2 a couple weeks later.  She spent about 4 hours with him and then gave him a phonics test.  She discovered he had absolutely NO phonemic awareness. After a couple more tests to figure out strengths, it was obvious to her that he was profoundly dyslexic.

With #1 we had also had questions for a long time.  He was a later talker, which is probably because he is dyslexic.  He didn’t read much until the end of second grade and by 4th grade he was far behind his peers in reading, although he had been given ever opportunity to be a good reader.  He avoided it at all cost.  And writing…..what writing?!?  His notebooks were blank.  Afew weeks after #2 was diagnosed we brought #1 to the same educational psychologist and he also had no phonemic awareness and showed many of the strengths of a dyslexic child.

We have not gotten #3 tested.  He is in kindergarten.  And, while he struggles with all things having to do with letters, his personality is much different than our older two children.  Life is a party for #3.  He loves everything about school.  He is getting the support he needs at this point and I know how to support him at home (something I didn’t know much about 4+ years ago).  I don’t see any point in having him tested at this point (not to mention the obscene cost of the testing!).  Perhaps the time will come when we need a label to get more services, but at this point I’m just following the path of the party and enjoying watching him still be full of wonder and joy.

My advice to parents is always….trust your gut.  Don’t let teachers or other people say that the reading will come.  If you think there is a problem, start digging, and ask a lot of questions.  If a diagnosis doesn’t seem to fit the child you know, get a second opinion.

How old were your children when they were diagnosed?

I’ve been getting a lot of questions from people through e-mail and Facebook.  I’ll try to do my best to answer them.  Thanks for asking your questions.

#2 was our first child to be diagnosed because he is the most severe and we were desperate to figure out why he was struggling so profoundly.  He was diagnosed in 2nd grade.  Starting in preschool we knew that his learning style was outside the norm.  In kindergarten his teacher started documenting things she was observing.  The documentation continued in 1st grade and by the beginning of 2nd grade we had figured out he was dyslexic.

#1 was diagnosed 3 months later.  He was in 4th grade.  He was still struggling with reading and I was concerned that he had no skills for decoding a word he didn’t know while he was reading.  Because he had a brother with a diagnosis we had him tested.  Dyslexia is genetic.  If one sibling has it, the chance that another sibling has it is about 50%.