Successful IEPs: Plan Your Work & Work Your Plan

My fearless blue caped superhero

I swear to you that our youngest daughter was born with absolutely no fear whatsoever. More than once the only thing that saved her was that little voice that whispers to me, her mother, "something's very wrong." I remember once taking her and her siblings to a wonderful park in our community that had the tallest slide I think I have ever seen. Scared me to death. I made it completely clear that none of my kids were supposed to get near it. To my fearless toddler my warning meant nothing and before I could grab her she was on her way up the staggered open sided platforms that led to the top of the slide.

I remember the first SST meeting I sat in for that same daughter. I felt just about the same way as I did watching her on those slide platforms. Intimidated, scared to death, fearful would be all be understatements to describe my feelings in those first meetings with the school. I had realized probably 2 years earlier that our daughter had learning disabilities far beyond the scope of her ADHD. For 2 years we'd been trying to get the school to listen and test her for disabilities. We didn't know how to make that happen and the school was not volunteering any help. Finally frustration led to my own research, friendships, information, the beginnings of understanding about student and parent rights and services. I stopped waiting for the school to help and started pushing for the school to help.

To be honest that first IEP was just a bare bones beginning but it was a beginning. It led to more decisions, more testing, more accommodations, and services. It opened the door to getting her help with multiple issues. For example, no one could understand a word our daughter said but for some strange twisted red-tape reason she didn't qualify for speech therapy until that initial IEP was in place for her Auditory Phonemic Processing Disorder. Then she suddenly qualified for speech and it was officially added to her services and goals.

A switch in schools to a charter home school program, more testing ended in a better understanding of

the extent of her disabilities, new IEP meetings, a revision of services, new goals, more work, research, more understanding. We were in the thick of it. Climbing platforms, adjusting our position, pulling ourselves up one level at a time.

ADHD, Dyslexia, Dyspraxia, Dyscalculia, Dysgraphia, Central Auditory Processing Disorder, Sensory Processing Disorder, not crossing the mid-line, problems with visual tracking the list got longer and longer. All led to speech, reading, writing, math services, occupational therapy. Hours and hours of therapy. Hours and hours of meetings about testing and services.  Hours and hours of work, for her, for me, for the whole family. We kept climbing, it was like we were almost to the top of those platforms and the slide back down to solid ground. That was the hardest and scariest time. Complicated to juggle goals and therapies, hard to do the work needed to make a difference for her, and to be honest difficult feeling like we were never going to get on top of things. Marking progress was arduous and painful. it often seemed like we were discussing the same goals and making no progress on them at all.

We just had our most recent IEP meeting last Friday with the intervention teacher that we've worked closely with since she returned to public school as a Freshman in High School.  He asked us if we wanted a copy of our parents rights. He was about to print them out for us when my husband and I both shouted, "NO!" we joked about how we might singularly be responsible for the death of a rain forest from all the copies of parental rights we already had tucked away in our files at home.

I realized something in that meeting as we were going through goals and checking things off that had been accomplished the largest of which was her passing both the English and Math sections of the California High School Exit Exam on her first try this last year. I realized that several years ago we started seeing real progress in her skills and began the process of eliminating goals and services as needed. More goals met and services dropped each year. Somewhere in the middle of the process we had hit the top platform and started down the slide and I hadn't even realized it. It was an exhilarating feeling this year as we dropped her one period intervention class and replaced it with a once a week meeting with the intervention teacher to make sure she was doing well in all her classes.

on a HS drama trip

She graduates next year, the more I thought about it the more I realized that our experience with her IEP is exactly how it should be. It is a testament of how the system should work. We started with the simple recognition that there was a problem, as we progressed we better and better defined that problem and set up goals and services to meet her needs. We planned our work and worked our plan until those services, coping mechanisms, therapies started to pay off, things started clicking into place. As she progressed, we met annually, more frequently when needed, we adjusted to meet her needs. For a longtime it seemed we only added and then slowly but surely goals were met and services started falling off. First to go was OT, then speech and most recently the last of her pull out services for Math and English.

She went from terribly behind to caught up to flourishing. This last year she score advanced in English/Language Art on state testing. My daughter diagnosed first with Auditory Phonemic Processing Disorder, then Dyslexia, Dypraxia, Central Language Processing Disorder scored advanced in English.

Interventions, modifications, accommodations,  pull out services, therapies, all seemed so intimidating and overwhelming when I first started this process. I didn't see how, couldn't see how, all this was going to come together for her benefit but I became a mother bear about it. I researched it, the disorders, the tests, the therapies, the modifications and services that would benefit her. I pushed, pushed the school, pushed the process, pushed myself, pushed her. And now, now we are enjoying the excitement, the feeling of freedom and thrill of conquering the slide.

I'm not going to lie, when my then toddler daughter got down the slide safely she wanted to do it again. I was still waiting for my heart to start beating again while I thanked those that helped her get safely down. I feel a little the same about this IEP meeting - we left feeling triumphant, I was wanting to thank the long list of people that have helped her get safely up to the top so she could enjoy the ride back down.

When I meet and talk to parents that are just starting on this journey the first thing I tell them is learn, learn everything you can and don't be afraid to dig until you really know and understand what is going on with your child. I tell them get your services in place as soon as possible, whether that is a 504 or IEP. Plan you work and work your plan. I tell them keep at it even when you are tired and discouraged and it seems like you aren't making any progress because I know from experience that if you do those things the pay off is big. It's big and wonderful and exhilarating.

Some things in life look overwhelming and intimidating the first time you look at them. That slide, the tallest slide that I'd ever seen was one of those things. I wonder what I would think about it if I saw it again today. Experience has a way of changing how we look at things. I wonder, if like the IEP/504 process, I would look at that slide with different eyes, knowing eyes.  I think I would.

You've Come a Long Way, Baby - Happy 16th

Oh Mary,

I can't believe that you turned 16 years old today.  My mind is filled with snapshots of all we've been through together.  You have been my greatest adventure, sometimes my greatest trial, always my greatest joy, and watching you continue to overcome the trials you've faced fills me with more pride than you will ever know.



You have taught me so much about parenting and life. How else would I know how to get royal blue fabric paint out of cream carpet. How to identify the sounds and smells of danger from across the house. How to listen to that mother's voice within just in time to catch a child who has decided to make a tightrope out of a bathrobe tie and traverse the distance from the crib to the bunk beds. How to unlock almost any door in record speed to stop you before you got into too much trouble.

You may be the most fearless person I know!

You taught me that while I may be a fearful person at heart, content to hide and operate in my little circle, there are things in this world worth fighting for. You, my dear, are one of them.You, facing your struggles, awoke the mother bear in me. Pushed me to be better, more dedicated, more courageous, persevere, fight both for you and for me.

Without you I would never know the power of a plastic pair of preschool scissors and that they could cut dollar bills into tiny strips or perfect squares out of metal mini blinds. For that matter I would never understand the value of your fierce independence.  Independence that made a little girl "problem solve" by taking those same scissors and cutting a huge strip of hair right off the top of your head to remove a comb that was stuck in it, giving yourself a reverse Mohawk.

I can see now that you needed that fierce independence. I can see now how that quality has served you in facing the litany of learning disabilities that you have had to face. I can see now how it helped you and continues to help you conquer them.

When we were doing the test shots for The Mighty Kubar and you were working the slate, you wrote the 5 backwards - I thought it was so funny when you started talking about all you dys-es.  As if it wasn't enough to have severe ADHD you came with your own special package.  Dyslexia, Dysgraphia, Dyscalculia, Dyspraxia, auditory processing, sensory processing, motor processing, wow, what a list and you only see out of one eye. How does this all fit together? It all fits together in you. You are so much more than your disabilities, though I know that sometimes it seems like the struggle to push past them is the only thing you can see.

I almost hugged the school psychologist that did your last set of IEP evaluations.  Why? Because she saw a fraction of what I see.  She started by saying, "Mary is really intelligent, so intelligent that she has come up with incredible measures to compensate for her disorders."  That my dear is the truth.  So intelligent.  More intelligent than you may ever realize despite our repeated efforts to drill it into your head.  But what you have is more than intelligence. Your fierce determination and perseverance, your fixation or obsessions, whatever you want to label it, pushes you. Your intelligence combined with your determination, perseverance, dedication, fueled by that fierce independence makes you nearly unstoppable.

That fierceness has driven you from a place where you couldn't read to a place where you read all the time. You write, draw, paint, film, act, invent, create, dream, anything you want to do, you set your sights on and do it. No learning disability has ever stopped you from pursuing what you want. I love that about you.  I admire that about you.  And when people see you doing all the things your peers do with ease I wish they knew what it took, the monumental effort you make, the hours of speech and OT, and work that you have put into doing what others do with ease. The fact that they don't think twice about it is a compliment to you. You make it look easy, natural, like a skilled ice skater or gymnast who makes it look easy, but has put hours of effort into their skill.


I know some days you wish you were "normal" that all the aspects of life and social skills came easily. We've talked about it. Mary, normal is overrated. You are so much more than normal could ever hope to be. At the end of the day you have a foundation of qualities that will push you past what normal could ever hope or dream of achieving.  I know it because I have seen it in your strong, determined, beautiful blue eyes.

Happy 16th  Birthday!

You've come a long way, Baby! I look forward to the adventure ahead, to watch and enjoy all the places you go, all the dreams you'll reach for, all the goals you'll achieve.

Love,

Mum

A Triumph for Sure: 22 Books in Less Than a Year

"Hi, this is Mary.  She is going to be in your class this year.  Believe it or not she is medicated, on the highest dose allowed by the FDA of two ADHD medications.  You can't really tell but trust me there is a big difference.  You should know that she is also dyslexic, she only sees out of one eye, she has a speech problem - you can't really understand a word she says.  She reads like she writes like she talks - it is all jumbled. Oh, and when she runs she leans farther and farther forward until she falls.  Have a good day!"

Turns out besides ADHD she has dyspraxia, an overall motor processing disorder.  It is a combination of all the dys' - dyslexia, dysgraphia, discalculia, etc.  She also has a language processing disorder - she doesn't separate all the sounds that she takes in - meaning that language has sounded like jumbled words to her most of her life.

Needless to say, despite her intelligence, she has really struggled to do the things that most of us take for granted like reading and communicating.  Her education has really been a constant struggle for her - she has had to work for every bit of knowledge she has.

Frustrated with the answers we were receiving in traditional school, tired of her sitting in class with most information flying over her head, we turned to a public charter home school program.  The program we chose was California Virtual Academy (CAVA).   They are responsible for the evaluations that really discovered the extent of her problems.  They have provided her with private speech and occupational therapy.  I could not talk about her successes with out praising their efforts and the system that really worked both for her and with her.

As hard and slow as the progress has been going to home school is a decision I will never regret.

When we started with CAVA Mary was in the 5th grade but reading at a second grade level.  She couldn't visually track well when reading, skipping large chunks in the text.  What she didn't skip she mispronounced or misread.  The amazing thing was that while she was at a 2nd grade reading level her comprehension was at grade level and beyond.  Some how in the fragments and chunks she was able to read she was masterful at finding meaning.

When Mary was about 10 years old she described it this way to her Aunt Anita, "It's like there is a beautiful picture and everyone can see it but I am stuck behind a fence.  I have to look through the cracks and holes in the fence at little pieces of the picture and guess what the rest looks like."

How profound.  How troubling.  How true.  How beautifully put. 

After years of hard work reading finally clicked.   She really started to make some progress about 2 years ago.  First, we got her books on CD,  her interest and drive to read  were finally there but her ability and stamina weren't.  We didn't want her to just rely on audio books so we made a deal with her - she would read a book and then we would buy her one on CD.

Then last April Mary came across a book she could not resist, Ender's Game by Orson Scott Card.  No more audio books.  She is 14 now and since last April Mary has read 22 novels.

Just like I have always said about her, she is still reading like she writes like she talks.  With her improvement in reading we have seen an improvement in her writing and her speech.  Just a couple weeks ago she felt and heard the difference in making the right 'R' sound for the first time. Her occupational therapist says her visual tracking is improving and she crossing mid-line spontaneously more regularly.

Last night I sat and watched her conduct a Young Women's program, she was distracted for sure; but, she was confident and pretty clear as she emceed the event and read aloud from printed materials.  Most of the time we are so deep in the trenches that progress really seems slow.

Most of the time our view is centered on the length of the long row we still have ahead of us.  Last night was one of those moments when I get a better clearer view.  Instead of just seeing how far there is to go I could see how far she has come.

This tenacious young woman is really starting to see the pay off a lot of hard work.  She has been strong when it was embarrassing, when she felt alone, and out of sync with her peers.  Plank by plank she is tearing down the fence and with each board she pries loose the view is getting clearer and clearer.  No more cracks and holes, she is after a better view.

I am proud of her.

* special thanks to Lisa Martin, her speech therapist, Goodfellow Occupational Therapy at The California Learning Connection, and her CAVA teachers, Mrs. Falco who has been with us all the way and Mrs. Shea