We won’t help

I finally had the meeting.  The meeting that was cancelled because of Polar Vortex #2.  The meeting that I thought would start us down the road of getting #3 individualized help.

That wasn’t the meeting that happened.

I was told he isn’t far enough behind yet. We won’t test him.

I countered with:

He hasn’t made progress.

He is far behind when you look at where he should be.

He gets further behind each day.

He is far behind if you look at his intellect.

He’s had a ton of interventions and he is still just creeping along with progress.  The interventions need to be more intense.

I was told again and again….he’s not far enough behind the rest of his peers yet.  He is behind, but not far enough.

The teacher sat there and said how he is reading at a level of a kindergartener and hasn’t made progress this year which is very concerning.  He does not know the sight words automatically.  And he knows less sight words now than he did in the fall.  Yet, he isn’t far enough behind yet.  They won’t test him.

What about writing? He can barely write his letters.

What I heard was……We won’t help.  I know this is not what they said, they told me about what the classroom teacher will do, and how the special ed. teacher can answer her questions, but this is how I feel.  We won’t help. Over and over they said he isn’t far enough behind his peers yet.  On a standardized test for the district curriculum he is not enough standard deviations behind the rest of his peers.

I sat in an office with the principal, an LD teacher, a school psychologist, the classroom teacher, and a student teacher (who I probably completely freaked out) with tears streaming down my face saying “I’ve been down this road.  I’ve already had two children fail.  I want this time to be different.  Please help this be different.  If we all work together, imagine the difference we can make. There are so many children that need help.  Let’s start here. Let’s make a difference and help him sooner rather than later.”

I was met with stone faces by everyone except the classroom teacher, who was also tearing up by this point……we won’t help.  Perhaps their stone faces were because they were following orders from people higher up.  Perhaps district office has tied their hands.  I don’t know.  My takeaway was we won’t help.

“We can’t help you because of the laws in this state.  We must follow the laws.  Perhaps you should put your energy into changing the laws surrounding this topic.”

This was their solution to the problem.  Oh yes….that sounds simple.

“Why do you want him labeled?” they ask.

I said, “I don’t want him labeled.  He is labeled.  This is the reality.  He is dyslexic.  I want him to have help for that.”

The LD teacher says, “I can’t label him dyslexic.  That’s a medical diagnosis.”

Oh, don’t get me started.  Honestly.  My head was exploding.  My insides were churning. That was a discussion for another day.

To say I’m devastated is an understatement.  Where can I go to get my children the help they deserve? I want them to read.  I want them to write.  I want them to feel successful in school….and not dread anything that requires them to write a sentence or read a paragraph.  I want them to live up to their potential academically.  I want them to not have their self-esteem crushed.

“Here is some information on why you shouldn’t label a child or test them before the age of 8.” the LD teacher tells me.

This is when my adrenaline kicked in.  Fight or flight…..I chose fight.  I couldn’t hold back any longer.  I stared into her eyes and said, “That piece of paper is crap.  Research does not support that anymore.  How dare you tell me that catching my child’s dyslexia early and fighting for him to get services is not what he needs.  I know what he needs.  I’m his mother.  I’ve been down this road 2 times already, and I refuse to watch one more child fail.  I will not do it again.  I’ve pulled 2 kids from schools where they weren’t getting help.  I’ve worked very hard to put them back together.  I WILL NOT DO THAT AGAIN!  This time I want my child to get help before he falls apart.  Before the anxiety.  Before the low self-esteem.  Before they hate school. I honestly can not understand why you believe its OK to not teach him with the methods he needs in order to learn how to read. I do not understand why my children get punished because they are smart enough to not completely fall apart academically.  I do not understand why I am being asked YET AGAIN to sit back and watch my child make very little progress while I watch the rest of his peers learn how to read with relative ease.  I have a diagnoses.  I have paperwork saying he needs intensive and individualized help.  I do not understand why we can’t work together and get him the help he needs.”

And then I started to cry uncontrollably, put my jacket on, and shoved the papers in my purse that told me why they won’t test him.

Meeting over.

My heart is broken.

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Another lost day

We’ve been vortex’d…..again.  And, looking at the weather forecast for Minnesota, there is more bitter cold on the way for next week.

While many people are cheering because there is no school today, I am filled with anxiety and sadness.  Today was the day I was going to sign the paperwork to allow #3 to get tested by his school.  I’ve been asking for action since September (actually, I’ve been asking for attention since September of his kindergarten year), paid a large sum of money to a private tester, had meetings, phone calls, e-mails, written a letter, more phone calls, supplied the classroom teacher with information about dyslexia, had other conversations…..and finally I had broken through.  I’ve been asking for a team to sit down and discuss #3 since December.  And now, near the end of January, I was finally given the opportunity to share my opinions and sign a paper that brings all this to the next step, getting #3 closer to the education he deserves.

And now….it’s cancelled.  The process has frozen.

Perhaps it will be rescheduled for next week.  Maybe the week after.  The entire time I hear the clock….tick, tock, tick, tock….and see time wasting away.

1st grade is half over.  #3 has made very little progress.  He doesn’t have weeks, days, or even hours to waste at this point.  I see the other kids in his class making progress, while he stays at the same exact level he was at in kindergarten.  The gap becomes bigger by the day.  Education matters.  School matters.

I can see the future.  I’ve been here before.

He will be tested…eventually.  Results will be questioned.  There will be more meetings….but after spring break.  There will be a lot of head scratching.  I will have a lot of tears.  At some point its the end of April and I’m told, “Maybe we should just put something really minimal in place and figure it out next year.”  Summer school will be suggested….because if the approach didn’t work for 9 months, let’s try it for 2 more!  That sounds logical.  At this point I will lay my head down on the table and ask someone to wake me up when its all over.

How many other children are out there needing school to be in session?

How many other parents are filled with dread because of the lost days?

Time for me to focus on things I actually have some control over.

 Today #3 will weave potholders,

build with legos,

and perhaps make cookies.

And pray for warmer weather.

 

Complicating Factors

It was too hot.

It was too cold

I didn’t sleep enough.

I dressed too warm.

I started too cold.

I didn’t eat enough.

I ate too much.

I should have had a gel.

I definitely SHOULD NOT have had that gel.

The coarse was too hilly.

The coarse was too flat.

It seemed like we ran uphill, against the wind THE ENTIRE TIME.

There weren’t enough water stations.

I trained too much.

I didn’t train enough.

It’s the wrong time of the month.

I’m still slightly injured.

I injured myself 1/2 way through and gutted out the rest.

There are a lot of complicating factors to running races.  Conditions never seem to be perfect and a runner needs to adjust to the physical conditions around them.  Last spring my goal was to run a 1/2 marathon in 1:40 in order to get into corral 1 for the Twin Cities Marathon.  It didn’t happen.  There was always a complicating factor.  When I finally thought everything was working in my favor and I was going to run a very fast course I had run before….I injured myself.  It’s always something.

While #2 was being reassessed by the school district I had a complicating factor which caused me to not pay enough attention to the process.  My dad was going through a health crisis.  He was diagnosed with end stage heart failure that winter and had an LVAD implanted about a month later.  I was overwhelmed and felt pulled in two different directions.

The reason I share this information is not to gain sympathy, but to illustrate that there is always a complicating factor for families.  On paper I was the perfect parent to navigate the convoluted system of special education and get the best services for my child.  I did my college psychology research on learning disabilities, I worked in Special Ed., I was a 1st grade teacher, I felt comfortable with education jargon, I had a close and trusting relationship with the classroom teacher, I was a stay at home parent with flexibility to attend meetings, we had the ability to get an evaluation by a private professional, I had a strong support system of family and friends, etc.  However, I was also dealing with another stressful situation and that lead me to drop the ball on #2 for a couple months and trust that the school was doing their job.

It makes me sick to my stomach to think that other families are going through the same assessments and IEP meetings every day….well, the “lucky” children who’s learning disability is alarming enough.  Other children are just getting pushed aside and allowed to fall between the cracks (this was the tale of #1 before we moved him to a new school).  What about the children who don’t have parents as well versed in dyslexia?  What about the parents who are working 2-3 jobs to get food on the table?  What about the parents who don’t speak English?  Can’t afford an outside assessment?  Do not have a strong social support network? Have never heard the word dyslexia? Had a negative educational experience themselves so accepts when their child fails as normal?

This weekend the New York Times had a Piece “No Rich Child Left Behind.” While reading it I couldn’t help wondering what role dyslexia plays in the equation of the middle and lower class not performing as well in school as the upper class.  It is estimated that 5-10% of the population is dyslexic.  Many people believe 20% of the population is dyslexic. It does not affect 5-10% of affluent children who are able to afford outside tutoring and private schools, but 5-10% of the entire population.  Up to 10% of any classroom could be children with dyslexia, and our school district doesn’t recognize it and is not equipped to teach these children in the most efficient and effective way we know.  If a child requires a special method to learn, such as the Wilson Reading System, in my district you are told to figure that out yourself, even if your child qualifies for an IEP.  My district has one of the largest achievement gaps in the country.  Dyslexia is not the main reason for our achievement gap, but I do believe it is a complicating factor.  How many children out there are suffering with a learning disability and our schools are not equipped to help them?

My kids are fortunate.  They were born into a family with resources.  I have the knowledge, skill and financial ability (because of my husband’s job) to homeschool and tutor them individually with curriculum designed for children with dyslexia.  This is not most people’s reality.  Our situation is still difficult and we are stretched very thin at times, just like many families.  We are not an affluent family, but we are definitely not poor.  We have material and non-material resources and I was still unable to muster the energy to navigate through the educational system and figure out how to get help for #1 and #2 so they could learn and have the confidence to face dyslexia.

Our society needs to start recognizing dyslexia and do a better job of teaching these children.  We can do something about this.  It will always be a complicating factor, but it shouldn’t be the reason children fail.

For children with dyslexia, it’s time to

slow down,

get better form,

rethink the goals,

practice,

become stronger,

believe in yourself,

and get back on track…..

just like injured runner.

Imagine the possibilities if we could help children with dyslexia before they failed.

All children deserve the chance to soar.

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.