Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.



By, Ivy Scherbarth


Being a parent of a child with Duchenne seems to be my big chance to face every one of my deep, dark, lurking fears. I am afraid of death. I am afraid of the gradual decay and loss of independence that awaits us all but comes to those living with Duchenne so much faster. I am afraid of failing my children. I am afraid of losing their respect and attention when they still need a parent’s help. I am afraid of doing it wrong.  I am told that these feelings and doubts are normal and common, maybe even universal.

But now, as my son approaches school age, I find that I am also afraid of other things. I am afraid of IEPs (Individual Education Plans).

I vividly remember being six years old. I remember my first day of kindergarten. I remember wishing that my parents and teachers understood me better. I remember my inexpressible frustration when the adults around me just didn’t seem to get it – that I had no interest at all in reviewing my ABCs. Why couldn’t they understand that I just wanted to talk about the dietary preferences of Brachiosaurus versus other sauropods and whether the picture of Stegosaurus in my book showed the real placement of those mysterious boney plates? How can anyone concentrate on arithmetic in a classroom full of wiggly six year olds when there is the mighty Tyrannosaurus rex to contemplate instead?

I guess you could say that my early experiences with elementary school authority were less than glowingly positive. And now I have to do it all again, only with a kid whose special needs are much more special than my early passion for paleontology? And I have to convince a huge bureaucracy that they are required to accommodate my son when they may have never even heard of Duchenne? I have to understand a huge amount of information about something as opaque as education law? I think I’d rather face a real, live T. rex. At least I have a pretty good idea of what might happen to me with one of them. I don’t want to go to the principal’s office again! Oh, sorry, that really was too whiny.

Duchenne doesn’t let us parents stay whiny for very long before we have to pull ourselves together and take care of business. Duchenne requires commitment. Duchenne requires self education. Living with Duchenne requires us to face our worst fears and get over it because our children need us. Our boys with Duchenne need us to be unfailing advocates for their special needs.


So I’m working on it. I went to a lecture given by our local children’s hospital resident neuropsychologist on navigating the school system’s programs for kids with special needs. Dr. Kendra Bjoraker has been through this before. She has attended IEP meetings as a school psychologist and as a parent of a kid who needed an IEP. Her advice to us was pertinent, specific, and helpful. Kendra told us that working with the school administration is a kind of game and that if we play by the rules we are more likely to get what we want. She suggested these key points:

·         Prepare

·         Know the law

·         Know the players

·         Know what you want to achieve

·         Take notes

·         Dress and behave professionally

·         Smile and shake hands

·         Sit next to the highest ranking official in the room

·         Liberally distribute copies of the new edition of PPMD’s “Education Matters

·         On the table in front of you, set out a notebook, a copy of “The Everyday Guide to Special                       Education Law” by Randy Chapman and your copy of “Education Matters

·         Bring donuts

This is the part where I freak out. OMG that’s a long list! I don’t have time to do all that work. I’m still trying to get those darn stretches done for him! I don’t know how to do this!! But parenting is all about overcoming our own feelings in order to serve the best interests of our children, right? You try not to laugh at the toddler throwing the hilarious stomping and dancing tantrum, you try not to swear in front of the kids even though you just hammered your thumb. So….

The IEP is a legal contract which has a lot of rules. It is binding. It must be reviewed and updated yearly. The IEP allows your child’s team to customize the curriculum to accommodate your child’s unique needs. Kids with Duchenne are eligible for an IEP under the IDEIA law “if their disability interferes with their education.” I’d say that pretty much counts for all the kids with Duchenne, even discounting the infamous “cognitive package,” since learning to write is all about repetitive physical exercise and getting up and down from the floor is part of the typical kindergarten curriculum.

A Section 504 Plan, on the other hand, is a part of the ADA, which covers the civil rights of people with disabilities. A 504 Plan is not legally binding and is not required to be reviewed or updated ever. These plans prohibit discrimination but do not confer the ability to alter the curriculum. Kendra suggested that the kids who are only using a 504 Plan tend to slip through the cracks educationally.

OK, breathe. What I've learned over the years is that the most important things to remember in life also tend to be the most obvious once you stop to think about them. Applying that here, basically sums it up to 1. know your kid, and 2. know what you're up against. It seems that the IEP experience for most folks is a confrontational one. In my case, however, I am just //naive// //foolish// sanguine enough to believe that my son's IEP doesn't have to be. I know that our elementary school is one of four "focus schools" in town that has the full spectrum of special ed services. Our school has lots of kids with IEPs. I know that our principal is an intelligent and caring education professional. After all, if the principal is good, the principles of the school will surely follow. And I happen to know that the gym teacher at our school is the kind of guy who wakes up each morning and says to himself, "I am so lucky! I get to help all kinds of kids participate today!" I've actually seen kids who need wheelchairs in regular activities ascend the school's climbing wall with their peers (a great harness system and a supportive environment can do amazing things).


The bottom line is that we have chosen the best school available to us. These are nice people who want to see success from all of the kids in their care. These are professionals who are used to kids with disabilities. And I have the good advice and good examples of the folks whose boys with Duchenne have already been through the process. I know that no matter how tight funding may be, or how limited resources may seem, the law is there to make sure that my son gets everything he needs; if necessary, I can insist that the school provide services that work for him. So I shouldn't be worried. Pass the donuts.


Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.


Before IEP 

By Pat Furlong

Fall:  School Days

The day each of my children started kindergarten I cried because life changed for them and for me.   In my head, there was a protective bubble around Jenny, around Michelle, around Chris, around Patrick and with each school year, small windows appeared in that protective bubble, some good and some (for me) worrisome.  For this reason, my love/hate relationship about school began to evolve.


I love education, the more the better in my book.  Education expands our world, helps  mature the way we think about things, entices us to imagine the impossible and enhances our creativity.   And while I smile when someone mentions the ‘perennial student’, I am secretly one of them.     My children loved school,  for the scholastics, for the competition, for the sheer enjoyment of learning, for the friends, for the anticipation and, to be honest, for the hustle and bustle of the school schedule.


My love/hate relationship crystalized on that June day, when the word Duchenne accompanied every sentence.   I loved school because of what it held for Jenny, Michelle, Chris and Patrick.  They thrived.  They were engaged in their studies, all except Patrick who, much like his mom, found reading textbooks and spending time on homework to be less of a priority than his social strategy.   Within the first weeks of school, it was not a surprise to receive a call from the principal to alert me to the fact that Patrick and his friends were playing poker in the cafeteria with their lunch money.  And I was never shocked to learn that Patrick called Pizza Hut and had pizza delivered to the principal’s office, just to make everyone smile.   Jenny, Michelle and Chris consistently lead their class in academics.  Patrick explained that 3 out of 4  children in one family with 4.0 was actually sufficient, that he would cruise in with ‘B’s’, leading his class as the ‘most fun and most loved’.    Indeed, he was.


I loved everything about school in terms of learning, growing, developing and maturing.  The hate part rolled in with the diagnosis.  At that time, there were no formalized systems (at least in the parochial school system) for discussing individual students, their needs and how to insure a successful school experience.  I found that I had to reach out one-by-one, to teachers, to administrative staff, to parents, to students – to talk about Duchenne, what to expect, what might be required, how to help.   I found myself in the principal’s office (at times apologizing while smiling about Patrick’s behavior) requesting a meeting with all of the teachers.   In tears, I explained what I knew at that time, describing an unpredictable future and finding the word DUCHENNE so big, that it was nearly impossible to explain or comprehend.


I loved and hated the school schedule, waking early, often rushing through breakfast, running through the checklist – books, homework, lunch – and in so many ways wishing for weekends, when we had extra time – time to play, time to laugh,  time to spend together.


And each year, as we all found ourselves in the rhythm of school,  I hated the part where every one of the students could run, up the stairs and into the classroom and my sons struggled.   It was so easy for them and each day I wished for my sons to have that experience.


As the years flew (and they flew!), I learned to navigate the system.  I learned about word and the impact of those words.  I learned to find champions.  I learned to smile and I learned to bribe – giving thanks, sending notes, happy to explain to anyone and everyone.  I learned to ask for what we needed and I learned to expect results.  I learned that dark chocolate and doughnuts are entry points.


Patrick had to write a book review and to this day, I cannot recall the title of the book, but I remember the last line of his book review.  It is painted on the inside of my brain “people are good, you just have to believe that, ask them to help and expect they will.  CARPE DIEM”.


Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog





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Comment by Chris cate on September 21, 2011 at 10:49pm

We have heard horror stories of the 504 and IEP meetings.  We have been praying our meeting would go well. Our school wanted our son to have a medical plan as they did not understand the disease.  After spending 10 minutes of informing them the progression of the disease they stopped the meeting.  At this time there was only a principal, teacher, and nurse involved.  All of the school staffed agreed he needed an IEP "now" so to protect him in the future.  We were only praying for a 504 but was blessed with an IEP.  Now we start the IEP process.


I think what helped us was one (the article above).  My wife and I dressed in business attire (not suite tie / dress) but like we mint business.  We came with our sons 3 inch binder of medical information.  I think they were shocked when they saw the 14 business cards we had for all of his doctors from Ohio and Tennessee.  So, go prepared, talk positive about the teacher, sit beside the person who make decisions, and come prepared.  Look like you know what you are talking about, even if you don't.  Please note our son is in Kindergarten so we have a long process.  We pray we can get this encouragement each year. 


Praying for all of our sons,


Comment by Carol Keskeny on September 9, 2011 at 11:55am
Donuts are the key!  It shows you come in peace and some of the teachers need to have something in their mouths so they can keep quiet while you explain your child's needs.  I have been a teacher for 32 years, however, sitting on the "other" side of the table as a parent at endless IEPs was an experience I never want to go through again in my life.  MOST of the teachers and administrators understood my son's issues, but the few who didn't still haunt me.  It took me 3 years to get an accessible door button put on his high school entry way.  There were teachers who refused to cut homework, what were we doing every night that my son couldn't do 50 math problems written out to show his work, etc?  My saving grace was my husband who happens to be an OT would calmly put his hand on my leg, (to hold me down from crawling across the table ready to strangle the next person who made a rude comment) and explain to the team that what they were suggesting was illegal.  I was appalled at my own profession!  My son was "lucky" we were in the business so we weren't bogged down by all of the jargon.  My advice is to be your son's advocate in the most positive and supportive way possible.  And please don't wait 3 years for an accessible door button!  Take an advocate with you if you are stressed, scared, or unsure of what is being said.  It can be very intimidating to walk into a room with 8 other people telling you what your child can't do.  Bring donuts!  (I actually took flowers...wish I had thought of the donuts so some of them could have stuffed their mouths!  smile)
Comment by Ofelia Marin on August 11, 2011 at 10:31am
Ivy, I do understand your anxiety. However after my first experience with IEP last year when my son started preschool I actually found out that it can be change at any time, not only once a year, that you can request a meeting to modify/discuss/add to it whenever you want during the school year. It is actually not such a big deal. While I did not have to change anything in my son's IEP and he does not have any issues with his academic development, I am now certain that everything you have in your son's IEP can be changed easily to fit his changing needs. It is not set in stone and the people involved are flexible.

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