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

Winning the Battle with Struggling Readers

I was a reluctant reader when I was a kid. In fact, calling me a reluctant reader might have been an understatement.  My parents tried everything.  They took me on frequent excursions to the books store to buy me the book of my choosing. They sent me to after school reading programs with strange plexiglass sheets I was supposed to place over the page, a mechanical arm lowered down the page line by line at the speed I was supposed to be reading.  It always beat me by what seemed like hours.  They even taped money in the back of books as a reward for when I finished reading a book.  I am not sure I EVER got the money at the back of the books.  In fact, whoever goes through my parents books is likely to find a small fortune still waiting for me to finish.

Eventually, I figured out some things about myself.  First of all, I really can't read unless I am saying the words out loud in my head.  Can't do it.  Second, I'm really not a huge fantasy fan.  I love facts though, I am a great factual reader and if I venture into fiction you can pretty much bet it's factually or historically based.  Third, my spelling and reading struggles would certainly tend to prove that I had some sort of learning disability going on.

I didn't want those struggles to be passed onto my kids.  I didn't want them to have a string of unread books trailing behind them.  I wanted them to be avid readers.  Imagine my own distress as I struggled with two dyslexic daughters, trying to help them overcome their disabilities and find a passion for reading.  By the time that Fernando came to live with our family we had overcoming reading struggles and instilling a love for reading down to a science.

I recently read an article about helping the reluctant reader become an enthusiastic reader.  There were some great ideas in the post but unfortunately most of them would not have addressed the needs of my reluctant readers. We have found some great tools, however, that we have used over the years with all seven of our kids, those with dyslexia, those without it, and our late comer to the family who we are pretty sure is dyslexic also.

1.  If you have a child that is reluctant to read please consider starting with an evaluation for learning disabilities.  Most kids will not be seriously reluctant to read unless there is some sort of problem making it difficult or frustrating for them.  An evaluation can confirm learning disabilities and set you on the path to conquering them.  In the absence of disabilities it can also find weaknesses or gaps that may be making reading hard.  Regardless of the outcome, it's a great place to start.

2.  Weak visual tracking skills can make reading hard and exhausting.  The solution is fun.  Play games that help visual tracking like mazes, connect the dots, word finds.  Investigate with I Spy type books, Where's Waldo, and picture searches.  One of my daughters went to Occupational Therapy for 3 years, she loved tossing colored items on the ground then spinning (like on a swing) and trying to pick up all the red or yellow items and place them in containers.  There are many OT games that help with visual tracking.  Look online or check out The Out of Sync Child Has Fun (a wonderfully helpful book)

3.  What kind of reader is your child?  We have some that love fantasy and some that hate it. My 20 year old was just telling me that she still prefers fantasy to any other form of literature.  Her younger sister is a factual reader all the way.  Another sister will hardly entertain anything that isn't science fiction.  Especially for a child that struggles with reading it's important that their pleasure reading be from a genre they want to read.  Fortunately we live in an era where children's literature has a lot to offer in almost any direction your young reader wants to go.

4.  Phonics doesn't work for everyone - there are other ways to break the language code. My oldest, one of my dyslexics, to this day can't sound anything out.  She learned to read by memorizing whole words, their shapes, using key letters as cues.  Once she realized what worked for her she went nuts studying words and adding them to her internal dictionary.  She reads extraordinarily fast now, around 300 words per minute.  There was a time when I thought that would never happen but when we found what she loved to read and combined it with a way to break the code of language, she became unstoppable.

5.  Split the reading.  One thing we have done with all of our children is split the reading.  At first, with each of them, we would read large chunks and they would read a sentence or two.  As their skills and stamina took hold we would read less and they would read more.  Regardless of the amounts we would take turns, I would read then they would read.  This is a long process, it's not like by the end of one book they are going to be reading a page and me a sentence.  But as you continue to read with them, over time, their skills and stamina will improve.

6,  Reading aloud with your children opens up the world of literature to them.  We don't just read aloud to them though, we read aloud with them as a family.  From the time our children were too little to read we would take turns reading, helping the younger ones, or ones that were struggling with words they don't know. At first they would be simply repeating what we whispered in their ear.  Then they may only be able to contribute all the "and"s or "the"s in there part of the reading. Contributing gave them a sense of success. We would also stop to explain what certain words or phrases meant.  Reading together has become a  cherished family memory in our house.

7.  Use technology as a tool to help your struggling reader.  There are many types of assisstive technology that allow you to change the color, size, and spacing of text.  What a gift for those that are struggling with text that is too close together, a sea of text or other issues.   Take advantage of services out there like BookShare and Audible that can help with adjustable text and books on CD or mp3.  One of our daughters had her first successes by "reading" along with books on tape. That sense of accomplishment fueled her desire to read on her own, at her own pace.  We have always been careful that she didn't become so dependent on audible books that she gave up on reading for herself.

8.  Pick books that are a little challenging in context, language, and length but NOT defeating because they are so hard. As your reluctant young reader grows and learns it's important that they have success.  Triumph fuels empowerment, defeat re-enforces a sense of failure.  Sometimes that means you will have to tell your reader they're not ready for a book.  We always made the desired book a dangling carrot, then found stepping stone books to help them reach their goals.  These stepping stone authors became some of our children's favorites.

9.  Make time for reading when your child is at their best not overly tired or mentally exhausted.  This was really important in our ADHD house where mental exhaustion from trying to focus is a real and tangible issue. One of our dyslexics told me that trying to read at the end of the day as part of homework was like smearing mud on her face and rubbing it in.  It just made things worse and certainly made her struggles seem insurmountable. Make reading time special, create a bedroom fort, a closet nook, a cozy corner where reading is the only activity that gets to take place.

10.  Give rewards - treats, new books, whatever your reluctant young reader's currency is, use it. One of our very artistic daughters would argue with the pictures as she was first learning to read.  We started covering the pictures and then letting her draw her own illustrations when she finished.  It was a great motivator to her, is it any wonder that she's a concept artist now, reading peoples literary works and creating visual images of their characters.

The biggest advice I have to share - never give up. Where there's a will there's a way has gotten us through some mighty tight spots. As you are figuring it out remember to have fun, we all learn better and faster when we are having fun.  Today, I have to pry the books from my children's hands, chase them down out of the bathroom and other perfect hidden reading spots, sometimes I even cringe when they beg to go to the bookstore because they finished a book, the 400 or 500 page book, I bought them yesterday.  But these are great problems to have.

*The pictures are all covers to some of our family's favorite books - I excluded the obvious best sellers like Harry Potter and Lord of the Rings and put up picture of some gems that you might not have heard of
 
PS For some people the library is a great tool but not for us. Remember we are a house of ADHDers - we really can't afford the lost books and late fees that come with visiting the library - and no one really wants to see their face on a wanted poster.