Lanterns: Parents of Special Education Students: Don't be Afraid to Release Your Inner Grizzly

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Parents of Special Education Students: Don't be Afraid to Release Your Inner Grizzly

I have never met a teacher that woke up one morning and declared, "Today is the day I will ruin the life of a child."  

Teachers work hard. They care. They try to make a difference in the lives of all the students they work with year after year.  I am sure of these things, but when your child has a learning disability and is in Special Ed, it might not always seem that way.

My husband and I are blessed with five healthy kids.  Three of them my friend describes as "twice exceptional" (she is a special ed teacher).  Of course, she doesn’t have to live with them.

They have very high IQs, but are dyslexic.  They struggle with reading and processing visual language.  As their Mom, it was apparent to me that something was wrong.  I picked up on it very early, but struggled to convince the school.  

The first one is going to graduate this year, and it has been a very long exhausting journey.  As a parent, it was worth it, but there were times it seemed like a battle I could not win.  Lucky for me, I had a strong support system, and even better, an understanding of the law.  Let me tell you part of his story.

My son was a very difficult toddler. When I say difficult, what I really mean was horrible, traumatizing, and looking back, God only knows why I had three more after him.  

At 18 months I found him sitting on top of the refrigerator in the middle of the night.  He wanted cookies, and six ft was not a deterrent. He used the drawers as a set of stairs, the microwave, the toaster, and a big mixing bowl.  He was able to stack them in a perfectly stable way, climb to the top, and get the cookie jar.   

"Child proof" took on a whole new meaning.  He was able to open child proofing devices faster than I could lock them.  By age four, he had done so many dangerous things, that I didn’t think we would get him to age five, must less age 18.  He ate my prenatal vitamins and had to have his iron levels tested every 4 hours for 24 hours.  He fed the dog his Grandma’s diabetic pills, he caught the house on fire- twice, built a campfire on the porch (since I got mad when he did it in the house), and tried to drive the quad by pushing it over a hill to get it started.  Oh yea, that one ended badly.  Broken rib and collarbone.  

And then he went to school...

He was hyper, creative, and did not learn the way other kids did.  I knew it before he went to school.  He did not like to read.  He would not sit on my lap and focus on a book.  He had a hard time identifying in a book which way was up.  By the end of kindergarten, he still had six letters he could not identify: b, p, g, t, o, and q.  They all looked the same to him.  

First grade was the beginning of our real problems.  He had two teachers that year.  One recognized his intelligence, and one did not. The second actually told me my six-year-old was lazy and would never going to amount to anything. She said he was too “stupid” to even be good at cheating on a spelling test  (Yes, she said it, and it took everything in me not to hit her).   

He could not identify the words that were on the wall as being the same on the test.  I saw the problem then; she could not.  She made him hate school.  It has been a battle ever since.  I had to fight him, and the system too. By the end of first grade, I asked to test him. They told me "NO."  He still could not read.  I suggested retention, and again they said "no."  So he did reading recovery.

Second Grade

He had a good teacher that year.  She still could not teach him to read.  He was creative.  I knew he was bright; he was too good at thinking of things that were crazy smart.  Dangerous, but inventive to say the least.  I asked for him to be tested again and this time they said, "OK."  None of their interventions were working.  

Rule number 1:  When they say no, just keep asking.  Don’t give in and don’t give up.  Follow your instincts.

The school had him tested internally.  The school psychologist that tested him did not have a doctorate.  We came in for the meeting, and  I was told “...you might just have to accept that he is not very smart. We are not going to recommend him for any additional services at this time.”  

This answer was not acceptable, so I took matters into my own hands.

I scheduled an appointment with his doctor, and she recommended us to the nearest children’s hospital.  We spent all summer running back and forth 120 miles round trip.  I bought a pass to the zoo, and in between appointments we did some mother-son bonding.  It made the testing a little easier for him to tolerate.  Our insurance did not cover the services that he needed, so the bills wracked up-- almost $8000 (It took us fives years to pay it off).  By the end of the summer, we had our answers.  He was smart, but they had a hard time with determining just how smart.  In most areas he tested as "gifted," but then there were other areas that he was low average. The biggest clue was the memory test.  He could remember up to 8 numbers 30 minutes after he had been told them.  He recited them perfectly... backward.  We left with answers, and I knew what he needed.  Now I just had to get the school on board.  

Rule number 2:  Schools hate the word attorney, and a lawsuit scares them to death.

Third Grade

I called a meeting.  The school only has so many school days to comply, but by the time we got there, we had lost half of 3rd grade.  I provided the school with a copy of the hospital’s testing results.  They were more comprehensive than the schools, and had been conducted by doctors.  The hospital's results were conclusive.  My child had a non-specific learning disability in language, aka dyslexia.  

The director for the case conference committee informed me that they would not be accepting the doctor’s recommendation, that they were not required to, and that my child was not L.D.  Challenge issued and accepted!  My response was simple. I said, “I spent $8000 determining what was wrong with my child, and I have no problem spending $8000 more to sue you.  How will you explain to the judge why you will not accept the diagnosis of the premier children’s hospital for our area?”  

The next day, they called to tell me he qualified.

Fourth Grade

Overall things were progressing.  I did research and learned a lot about kids with processing problems.  I also hired reading tutors, and worked with him at home, and communicated with the school-- a lot.

Rule number 3:  Don’t wonder.  Ask!

At this point, we were starting to need more extensive accommodations.  These can be anything.  Don’t be afraid to ask for thingsand never be afraid to point out stupidity!  My son had to leave his regular teacher who was great with L.D kids and go to a young teacher who had limited experience.  Her idea of an accommodation was to remove two choices on a four-choice multiple choice test. She did not see the problem, and to this day has not forgiven me for not allowing it to be done.  This was when I realized that periodically, I needed to remind everyone that the goal is/was learningnot a grade, and definitely not just getting it done.  THIS was when I discovered the difference between an accommodation and a modification.  

Rule number 4:  Know your stuff!

Accommodation vs. modification

According to Understood.org:

Accommodations can help kids learn the same material and meet the same expectations as their classmates. If a student has reading issues, for example, she might listen to an audio recording of a text. There are different types of classroom accommodations, including presentation (like listening to an audio recording of a text) and setting (like where a student sits).”

“Kids who are far behind their peers may need changes, or modifications, to the curriculum. For example, a student could be assigned shorter or easier reading assignments. Kids who receive modifications are not expected to learn the same material as their classmates.”

They wanted to modify.  I did not.  I wanted him to be able to go to college someday.  We had to catch him up, not delay him more.

At that point, I called another conference.  I can not tell you how many we have had over the years, but more than they wanted for sure. "Fair" is the new "F" word.  I hate when I hear teachers and staff use the word, "fair" regarding my son.  They tell me it's not "fair" that he get's extra time to do assignments, or "fair" that he get's to redo homework...  Really?  Do you really want to talk about fair?  It's not fair that it takes my son two hours to read ten pages.  It's not fair that when he looks at a page of text, it looks like it's moving.  Let's talk about fair, shall we?  Fair is a word that should NEVER be used when discussing a student with learning disabilities.  They have to work longer and harder while being treated like they're incompetent, lazy, and stupid. That's definitely the opposite of FAIR!  

One accommodation that really helped my son was being able to redo assignments without penalty when he could not show mastery of the skill. School should be about the learning, not the grade.  Every Saturday and Sunday was a redo day.  And this began a battle that still is going on today.  If it is not the kid fighting me, it has been the school.  They have tried to get rid of that accommodation repeatedly.   The answer remains the same.  NO, because it is effective. When teachers say, "That's not fair."  I tell them that what's not fair is that my kid is sitting for five hours Saturday and Sunday redoing assignments while other kids take the weekend off. Seriously? In "real" life people retake tests without penalty all the time-- doctors, attorneys, even teachers don't pass the tests required in order for them to obtain a license the first time.  

It's important that we, as parents, follow through.  If you're not willing to do it, don't ask for it.  

Rule number 5:  The committee is not a democracy.  Popular opinion doesn’t matter.  IF you don’t agree, they can’t do it.

I have asked teachers to leave the conference, and I have invited teachers of my choosing.  It is my right.  If they are not contributing, they are not needed.  I have been criticized, blamed, and chastised.  I have had conferences where they have admitted they are not following the IEP, and I have had conferences where I have felt that we really were working as a team.  It’s not been all bad.

Rule number 6:  Don’t sign if you don’t agree!

Things went as well as could be expected until high school.  Bigger school, more teachers, more opinions, lead to more arguments.  We modified his accommodation to better meet state requirements. We added a quantitative piece.  The accommodation now defined mastery at 70%. Right after we finished a three-month rewrite of the IEP, a brand new special ed teacher joined our school.  My son was added to his case load, and after six days, he decided we should change the only thing that had ever seemed to make a real difference in my child’s learning.  My response to him.  NO.  Not going to happen.  You have known him for six days, I have known him for 16 years.

Rule number 7:  NO ONE knows and loves your child like you do.  FIGHT for them.

That day I made an enemy.  It was his fault.  He listened to teachers use the "fair" word and bought into it.  What he did not know is that raising my son has given me a will of stone, and I don’t negotiate-- not when it comes to his future.

Rule number 8:  Never give up!  And don’t forget to celebrate the successes.

As I told you earlier.  We are down to the last few months.  The finish line is in sight, and he is going to cross it.  I use to think that I would have to drag him across, but he is going to do it at a run.  He is taking honors classes and maintaining a B average. He has passed all of our state graduation tests and is achieving things that I did not think possible. He will graduate high school with nine college credits.  None of this would've happened without the help of great teachers, and an iron clad IEP.  We ran into a few turkeys along the way, but most were eagles and taught my son to soar. 

 

Written by Rae Ashcraft

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