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

ALL HAIL TO THE QUEEN

(a letter from the Distracted King and his court of jesters)

It is ADHD awareness week.  As some of you may already know, my lovely wife went along with my scheme to get her on a local TV show to talk about ADHD. Don't get me wrong, she is not afraid to talk, she is just embarrassed about how she looks and she feels frumpy, however she did it and did not complain.  Like so many things in our lives, she does them and DOES NOT COMPLAIN.  People ask her how she is doing and she usually says, "I'm fine" but little do they know, she is a master liar.  Well at least where HER health is concerned.  

She arrived a little early at the station on Monday because she had just finished attending a school intervention meeting with a friend that was in over her head trying to get accommodations and a diagnosis for her son.  For those of you that saw the video clip that we posted the other day, you probably saw a housewife and a mom, advocating for those that have a difficulty speaking for themselves.  She does it every day, all day for us and for anyone within her reach.


What you didn't see is the cane that is her constant companion and with her everywhere she goes... she happened to leave it in my office during the show (which I didn't realize until afterwards).  She did it because she doesn't like explaining to people why someone so young needs a cane and she doesn't want people to know that she is in pain all day every day.   

Lisa has an auto immune disease called "Ankylosing Spondylitis" (say that three times fast)... we just refer to it as A.S.  For many years the only thing that helped with the pain was a nasty little drug called Prednisone which does combat the chronic unbearable pain, but it has some very unpleasant side effects.  Major weight gain and Moon-Face are some of the more obvious side effects and sadly not as severe as some of the others that are associated with Prednisone.  Back when we were first married, the alternative was to lie still in a completely blackened room secretly wishing to die… sadly she started taking it years before she met me, I believe in her early teens. Thankfully, the Prednisone that has made the only difference in her pain for the last thirty years is now at a very low dose and is taken mostly when her NEW infusion medication is wearing off (usually at the end of the third week in her four week cycle). 



So in the interview, what you couldn’t see is how she struggles every day.  How the muscle relaxants and pain killers that they prescribe to help her manage the golf ball sized knots and muscle spasms do little to help. You can’t see how difficult it is for her to get in and out of our 15 passenger van because in addition to A.S. she (and several of our kids) have another lovely disorder called "ehlers-danlos syndrome (E.D.S)" so if the chronic pain, spasms and knots weren’t enough, she gets a whole new batch from the E.D.S.   E.D.S. is a connective tissue disorder that basically makes her elastic woman, but not in a good way.  Her joints are so loose that you can pull her kneecaps around the side of her leg. So stairs and steps, uneven ground... heck even flat surfaces are all accidents just waiting to happen.  So the disease is turning her immune system against her and literally attacking her muscles while the disorder produces far too much collagen in her skin and connective tissue so any support she might have with her joints is weak and minimal at best.  I guess she should be grateful that she is even upright at all.
  

She has determined that she will post something every day this week.  Today's post was going to be a picture with a funny blurb or something inspirational, but I am afraid that just won’t do!  The reason it was going to be a picture with just a blurb is due to the fact that today, she will spend several hours hooked up to an I.V. getting an infusion. To date, this medication has been the only thing that seems to really help slow down her disease... not cure it or stop it, but just slow it down.  After her infusion, she will be driven home by our daughter and hopefully, if the cards are aligned and no major school trauma comes home on the 4 o'clock bus, she will get several hours of restful mostly pain-free sleep.  If all goes well that blissful sleep might stay with her for a few nights, which will end up being the only decent sleep she has all month until her next treatment. 

Why am I sharing all of this? I am fairly certain that she will want to kill me when she discovers what I did. That's okay, I am ADHD, I don't really care about the consequences right now, sure I may later, but I am fairly certain I can outrun her. The truth is she doesn't want people to know, she doesn't want pity or anyone treating her differently because of it.  In some degree, I think her trials are partially why she understands US so well.  On some levels she has empathy in regards to not being able to function the way the average person does.  She may not get us entirely, but she understands enough to communicate with those of us that are lost in a world full of possibilities and distractions, absurdities and epiphanies all wrapped up snugly in a bundle of co-occurring conditions.

When we were engaged, many of her friends half-jokingly told me that I was marrying a medical bill.  Too true, our co-pays for her medications and all of the many medications that the rest of us take literally make-up at least 1/4 if not more of my monthly salary... and that's with health insurance. If I knew then, what I know now, I would still choose to marry my little 5' fireball.  She has saved me in every way that one person could save another (my Titanic quote for the day).  She has rescued me from myself and the down sides of my disorders, she has encouraged me to soar and given me the strength to do so, but has helped me stay tethered enough to not float off into the ether.  She is my light in dark places and she is the most incredible person in my life.  Without her and her influence in my life I would most assuredly be dead or at the very least a broken person.  Although our life has been far from easy, it has been a life of worth, one of value and one that I am not ashamed of.  There are not words to describe how I feel about my soul mate, my wife and my queen, but I will spend the rest of our time together trying to find those words and saying them often enough for her to never forget.  

This week is ADHD awareness week.  While we are doing our best to advocate for this disorder and to help those who need help, let us not forget to thank those heroes who sink into bed or the couch each night, exhausted from a day full of re-directing, encouraging, reminding and every other thing that our friends and loved ones do to keep us on task and on track.  Let's take a moment to thank them and let them know how much we appreciate them and what they do.  Let's not forget that while we are neck deep in our struggles and difficulties, that the hands that reach out to us, that lift us, dust us off when we trip or fall, dress our wounds and guide us through the rocky terrain of life with our disorders… let us not forget that they have burdens of their own and trials to carry in this life, unrelated to us. Some may be on the surface some may be buried deep, but while we struggle to communicate and function in a world that is not necessarily designed for us, let's be sure to remember, show appreciation and even praise those that give so much for us with so little in return. I believe that the greatest gift that we could give our heroes and  our caregivers, is to harness the UP-SIDE of our disorders and use our incredible minds and often untapped gifts to make this world a better place and in some small way (at least), to bless the lives of those that fight for us each and every day. 

I have asked each of my kids to take moment to share a thought about their mother and what she does for them.  So when the Queen is getting her medical care today, we will do our best to hold up the Castle until she returns.  Long live the Queen... (This is my greatest secret wish!)

Humbly,
The Distracted King





Rachel – Age 20 
(ADHD, Inattentive, Dyslexic -  allergic to painkillers and stimulants)
When asked to write a paragraph about what my Mom does for me, my first thought is "that's impossible....I'd have to write a book" and that's not an exaggeration. My mom is the coolest most bad-A mom on the planet. Not only does she take time to help me with my needs and wants in life, but she takes the necessary time to understand them. She has not just watched me fight my battles but been there alongside me, fighting them with me. I am so blessed to have a mother who cares about me and my disorders, so… so… so… blessed. A mother who, before I was diagnosed and even now would sit for hours with me trying to help me understand homework problems or just simple matters of life that I couldn't process or didn't quite get. I could go on and on and on, but thanks Mum, you really are the coolest mom on the planet, and anyone who disagrees is gonna have to deal with me... or Mia cause she's more threatening. I love you.


Mariah (Mia) – Age 18 
(ADHD, Sensory Processing Disorder, ODD)
My mum is a phenomenal person. She is selfless and empathetic and very, very stubborn. This is probably part of what makes her such an excellent mother and a strong competent voice for ADD/ADHD and learning disabilities. Her demand for respect is balanced by her kind eyes and gentle heart. She does not understand what it's like to be me, but she has made more effort than anyone else in the world to try and understand, more than that, to help me learn and grow as a person. She has taught me that I have absolutely no excuse to fail. I cannot blame it on my ADHD or my sensory processing issues. She's taught me that even though it’s hard and sometimes it really sucks, it's a part of who I am. I love my mum so much.

Mia’s follow up email #1
Daddy,
I am lying in my bed sobbing because I wrote my paragraph and my stupid iPod keeps malfunctioning and won't send the email. It keeps telling me I have the wrong password when I don't, and its making me sob I hate it! :( :(

I am so mad, my paragraph was perfect. I smashed my iPod against my bed and I'm still sobbing I'm so mad. I can't even think. F u Steve Jobs you f-ing bastard you suck and I hope you're miserable!!!!!! :'(

I guess I'm just gonna have to start over and idk why this is making me cry but I'm really upset. It’s been doing this since I installed the f-ing new iOS and iHate it. I need to write it later I'm so mad and sobbing I can't do it.

Mia’s follow up email #2
By the grace of heaven it looks like it sent! Let me know if it did. Sorry about flipping out, now my eyes hurt for no reason.

Love you,

Mia

P.S. I still hate you Steve Jobs

Fernando (Fernie) – Age 18
(he has lived with us for 3 years now, we have no insurance for him so he is currently un-medicated)
Lisa has done so much for me. I am the un-medicated ADHD child. She listens to me when I spout about comic book crap that she has no interest in, and she makes a great effort to understand what I am saying when I am talking about the shows and the stuff that I love. She asks how my day was at work and how my friends are doing. She bends over backwards like an Olympic gymnast and doesn't even think to ask for the bronze. Thank you and you deserve platinum.


Hannah – Age 17
(the only one without ADHD)
The things my Mum does for me are innumerable, but I think the main thing she does for me is keep me sane. When I'm bouncing off the walls going crazy because of something one of my siblings has done she understands me and talks to me. She gets me like no one else in the house does. I miss the days when we were able to drive to Denny's and sit and drink hot chocolate and eat fries for an hour just to help clear my head. I always enjoy the times when we can drive together in peace, without the buzz of a million thoughts surrounding us. Even though sometimes my needs are put in the back because my siblings need something I feel like she is always keeping me in mind. She is always supportive and there to talk to and sometimes ‘to talk’ is all you need. When my siblings don't understand me or what I am going through I know that she will, and that she will help me in any way she can. My Mum cares and loves me, she listens and understands and that is what she does for me.

Love you Mum,
Hannah aka The Voice of Reason


Mary (Maggie) – Age 15 
(ADHD, Dyslexic, Dyspraxic, Dysgraphic, etc.)
Ever since I was born, I have had lots of disorders and problems which made it hard for me to do pretty much anything… Talk, write, do math.  Most parents would find me an impossible challenge.  She took me every day at 3:00 to therapy, then the school finally gave up so she switched me to a personal therapist which was a 30 minute drive each way.  I would go on Monday and then every other Thursday my mom would take me to another place an hour away.  She took me and waited for me for all of this.  Out of the last four years she has spent 730 hours taking me to speech therapy and occupational therapy so I can learn to function in society today.  This what my mom did for me.  I love you mum.


Hunter – Age 14 
(ADHD, OCD)
Mum you do so much for me. You listen to my stories even when you are extremely tired. You support me in everything I want to do from writing and drawing to calligraphy. You make sure I can get where I need to go, and help me when I need help. Thank you so much mama.

Jaren – Age 11
(ADHD)
(The intro to his email is in Korean and Russian… I didn’t bother trying to translate it, but he sent an attachment in English for his mom… double spaced [which I removed] with no punctuation)

my mom is made of angel tears she is the most amazing person in the entire world she has always been nice to me even if she has been hurting extremely bad she also buys everything we like and she cooks the food we want and she makes the most amazing pies in the world she also bakes extremely good and lastly mum I love you so much I just want you to know that