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

BRAVE - Embracing Your Inner Mother Bear

©2012, All pictures are the property of Disney/Pixar

We had anticipated its release for months, watched and re-watched the Brave trailers and teasers, planned what our excursion to see it in theaters would be like. Then we found out that, my husband was going to have to be out of town for the memorial service of his beloved uncle when the movie was released. We, ourselves, would have to be brave. We would wait for him to get home to see it.  Then his wonderful aunt stepped in with a solution. 

She sent tickets for us to go see the movie here while she and Mark would see it there and then we would Skype about how absolutely wonderful it was.  It was perfect.  Perfect, except that by the time we sat down in the theater I had been single parenting it for nearly a week. Yeah, I have a couple adult children but I will remind you that all of them have ADHD so they really aren't always 20 and 18 years old - they're on occasion, most occasions, more like 17 and 15 years old.

That day we had endured the accomplishment of chores (used the movie as a motivator), scorching Central Valley heat with no air conditioner, a trip with seven kids into the store to get movie treats (that's right I took seven indecisive kids into the store for treats). Not to mention trying to get from the entrance of the theater past all the distracting movie posters, video games, shiny lights, and survey-takers to make it to our screening. I had mediated arguments, consoled candy woes, redirected and redirected and redirected again, reminded pretty much everyone what socially acceptable behavior was repeatedly.

Finally, the screen darkened, the movie played, and I watched as the beautiful faces sitting down the row from me lit up with excitement and wonder. I took a breath, a deep one, I made it, and it all looked promising. Then I watched the movie... Wait a minute! This was my house on the screen if you multiply the fiery redhead a couple times and add another brother or two. Even the kids kept nudging me and whispering, "It's US!"  And the mom, the one constantly trying to keep order, teach social etiquette, and help her daughter grow into the wonderful powerful leader she knows she is going to be...me.

Suddenly, I wasn't so sure I wanted to be in the theater anymore. It wasn't the magical escape from reality I was expecting...it was my life!  And then the mother got turned into a bear. Really!? I smiled and nodded through Skype. Later, I would confide to my husband that the jury was still out on this movie for me. I would somewhat tearfully tell him that I was ready for him to come home.

Since then I have thought a lot about it.  I am that mom, I am a mother bear when I need to be, and I am okay with that. 

As parents of kids with ADHD or ASD or SPD or LDs or some combination thereof (and more), we don't have the luxury of not engaging in mother bear parenting. Our kids are brilliant but it takes a mother bear to uncover that brilliance so the world can see what we see easily.

We mother bears research disorders setting aside pleasure reading for books like The Out of Sync Child has Fun, Attention Deficit Disorder: The Unfocused Mind in Children and Adults, and Overcoming Dyslexia. 

We mother bears tell social stories, teach our children how to recognize when they're getting overstimulated by using number and smiley/angry face scales, we teach self-advocacy, right the world when it's unfair and unbalanced (which is nearly every day). We console children who know they're different from their peers who recognize that they will never get an award for staying on task, keeping a clean desk, turning in all their homework on time. 

We mother bears fight back very real demons like self-doubt and inadequacy. Sometimes those demons creep in on the heals of well-meaning but misinformed adults who don't understand the harm their looks, words, and actions can do. We stand between our children and those who don't understand, no matter who they are, sometimes even family, to advocate and educate.


We mother bears are up all night with kids who fight insomnia, depression, anxiety. We are at the school helping mediate in the classroom, we are in the principles office, at 504/IEP meetings often feeling guilty and accused when really we are just trying to protect and help what's ours.

We mother bears laugh at the comedic brilliance, at silliness, and uniqueness. We see greatness in our child's perseverance, diligence, and endurance. We glory in every bit of progress we see and trust me, we see the most minute bits of progress as huge steps. We see potential when the world sees trouble.

You know, I would rather be a mother bear than anything else in the world.  In some respects, I am here to say bring it on! This mother bear is here to stay. Because at the end of the day, like at the end of the movie, I know my kids recognize how important it is for me to be their mother bear. How do I know? My daughter has set a date for us to go see Won't Back Down. She says we have to see it together, "Because it's about a mom that takes on the school for her daughter, just like you."

The IEP (Individualized Educational Plan) as it Should Be

I will be the first to admit that I have IEP (Individualized Education Plan) PSTD (Post Traumatic Stress Disorder)- I get bristly just thinking about it.  I'm sure it was the horrible 2 year fight with the school to get one in place for my daughter that is to blame.

I was new to ADHD, learning disabilities, and educational rights at the time, new and inexperienced.  I was under the assumption that we all wanted the same thing for my daughter and that it was a simple process to get it done. That experience was the perfect example of how the system is NOT supposed to work.  Recently, with the same daughter I have had the perfect experience of how it IS supposed to work and I think it bares telling.

I sat in a meeting a little over a year ago for my daughter Mary.  I am not sure I have ever been so nervous in my life.  We were letting go of the security and control we had in home school after 4 years and braving public high school.  That was a big step.  As it would turn out we were due for our Tri-annual IEP meeting, complete with evaluations and reassessing her special-ed placement.

I braced myself for a fight, not knowing what I was going to be dealing with at a new school and school district. Completely prepared for them to want to downgrade her services.   I was completely bowled over when the school psychologist started her report on the testing, "It is clear that Mary is highly intelligent, it comes out in her ability to compensate for her disabilities, which are also clear."

It was a dream, I was sure of it.  I pinched myself.  It was exactly what I saw as her parent and what I wished and hoped that others would see in her.  We discussed her weaknesses, her skills, ways to make the system work for her, and a new set of goals.

I had never been in an IEP meeting like it.  It wiped away years of PTSD from some really terrible experiences to the very removed and clinical experiences.  These people seem invested in my daughter, in her success, and most importantly working with me as a team in her behalf.  

More impressive was the communication and adjustments that were made through out the school year last year.  Things were working and moving forward for her and as they changed her intervention teacher wouldn't hesitate to call.  I have never signed an amended IEP in the course of the school year before but I believe I signed 3 or 4 of them last year.

Needless to say I was not the least bit worried about her annual IEP meeting this year.  I knew what to expect.  I knew it would be friendly, understanding, helpful, and productive.  I felt very safe in the process, for the first time.  I was greeted by her intervention teacher.  Got reports from her individual teachers.  Each acknowledging her effort, her dedication, her struggles.

One teacher even said that she saw Mary doodling on her notes and remembered what she had heard on a radio broadcast recently; that for some kids with ADHD they actually absorb more when they are keeping part of their brain busy with some kind of fidget like doodling.  She told Mary, who was there in the meeting, you can doodle as long as I can see you are taking notes on the highlights of the lesson too.  I was back to sitting in bewilderment, pinching myself to make sure it was real.

Her intervention teacher started to go over the goals.  Goals has always been so tedious and so ridiculously far off.  Not anymore, these were reasonable.  He talked about the previous years goals of getting her ready to take the actual California State Standardized test and not the modified version.  That was one of our IEP amendments I had signed last year, he called to tell me that he talked to all of her teachers and they felt she would be successful, she was ready.  They had been right, she was ready and quite successful.  This years goal would be to up all those scores.

Then he talked about a goal I had never heard discussed before in any IEP meeting - her plans after high school.  What her career goals were, what colleges she was looking into.  I pinched myself again.  A written out plan to look at colleges, go to their websites, research their entry requirements, set goals towards the careers she is interested in, and work towards being ready to meet those college and career goals - throughout each school year.

This last two years has proven to me that it can be simple - it can be about the success of the child.  An IEP team that actually worked as a team. An Individualized Education Plan can be, as I believe it is truly meant to be defined.  A plan to start where your child is at, acknowledge where they want and need to go, plan for how to get there, and work to make it happen. 

If I Knew Then What I Know Now

Well time did not come to a screeching halt.  We were on the eve of Rachel’s most dreaded 18^th birthday and last night she said family prayer,  in it she slipped in a little personal request, “God if thou will please stop time for me.” 

Thinking about our oldest becoming a legal adult started me thinking about her life.  As the oldest there is no doubt she is the child we learned on, our guinea pig in parenting.  That is especially true when it comes to ADHD (Attention Deficit Hyperactivity Disorder) as she was the first diagnosed.

There is no good way to put into words Rachel’s brilliance or her struggles educationally.  She was about two years old when she drew the boy next door playing basketball.  There was a face, eyes, ears, nose, mouth, hair, body, with circles for all the major joints, feet, hands, and a basketball.  Developmentally that is astounding. 

But as she started school there was no end to her struggles.  She wrote her letters perfectly, but they were just art to her.  Perfectly formed but they had no meaning and she could not recall what they stood for or what sound was associated with then to save her life. 

As we worked and worked with her and she started progressing she was plagued by a younger sister who would blurt out the word she was agonizingly trying to sound out.  It was a never ending battle that raged in our house daily after school for hours on end.  Despite the years spent struggling, reading and math were like foreign languages to her and no matter how hard we tried or how many ways we tried she could not break the code.

I remember Mark and I many times trying to convince Rachel that she was smart, but one time in particular really sticks out and stings.  As Mark and I told her how smart she was and she argued back. She stopped the conversation, pulled out a spelling pretest with a big red F on it and said,

“See I am not smart... I am a failure.”

Our highly intelligent, amazingly artistic 8 year old could not be swayed.  To her core she felt she was a failure. It didn’t matter at that point what we said she wasn’t buying.  She had all the proof she needed. 

One of my biggest regrets has to be not seeking help for Rachel earlier. 

It was sixth grade before we would get her help.  Before she would get the help she needed.  The help she deserved.  I took her to a trusted friend and pediatrician and she was on medication the next day.  People have all kinds of things to say about medication, good and bad.  There are experts and studies to support whatever position that you want to hold onto.

There was, however, no greater proof for me than her excitement the next day as she greeted me at the school with the news that she had gotten a 90% on a math benchmark test. She had never ever passed a math benchmark test before. Never.

I have said before that medication takes you most of the way but is not a cure all.  Rachel didn’t ace every test or assignment placed in her path since she started medication but she was drowning before and it gave her the power to swim. 

Our last self esteem/intelligence talk was only a few months ago.  Unfortunately, it doesn’t seem to matter how many successes she has had since she started medication, and she has had many, she still battles that rough start, she can’t get that big fat red F out of her mind.

I can’t help but contrast that with our youngest son Jaren who started medication in kindergarten. Of course by then we knew what to look for.  When he started kindergarten I told his teacher that we suspected ADHD, filled her ear with the family history.  I told her we were watching to see when, not if, to put him on medication.  She clearly thought I was crazy and assured me that I was over reactive.

It wasn’t three months into school when she grabbed me after class and indicated that Jaren was, “not available to learn.”  Jaren started meds with in a month or two.  Jaren has never doubted his intelligence or his ability to learn.  Largely because he has had the benefit of everything we learned from parenting Rachel.

He is not scarred by those years of frustration, the hours of work to get one assignment done, the supplemental programs, summer long work to retain,  not to mention seeing and feeling the difference between him and his peers that Rachel had before we got her help.

Mark always says, “IF ONLY will kill you.” That you have to live by phrase “NEXT TIME” and that is true.  Rachel has made it and we have worked one day, month, year at a time to better meet her needs.  Despite her own doubts she is a good solid student and an amazingly creative and talented young woman.

But if I knew then what I know now I would not wait to get help, I would pursue it with a vengeance that would make any mother bear proud.  I would go to my pediatrician, if I was not satisfied with the answers I got I would seek a second opinion. I would not wait to do all the research and reading that I did after I was given her diagnosis. 

I would not be afraid of any diagnosis because now I know the power of knowing, accepting and doing.  Today I would encourage anyone facing the same road as our family to do the same.