The Dreaded IEP

I am a mom of a 35, 29 and 27 year old, all having IEP's from the day they began school. First in NY and then in Florida, I learned a lot about how the system works, or does not work. In total, I figured that I sat at the table at 34 IEP's and Transition Plan meetings, not counting the repeats, retries and reviews, to which I was invited so I could sign the changes!

I was lucky, in a way, because I didn't have friends, families or other acquaintances advising me that IEP's were created to drive parents crazy, or the friends that would say "just grin and bear it, your kid will get what they see fit anyway"...I was able to figure it out for myself, which was a good thing.



My first IEP was for my oldest adopted daughter. She came to live with us, already registered in the second grade. She was a challenged 8 year old. The time we spent at her meeting was pretty productive: an educational psych was ordered, her classroom assignment was predetermined by her last school placement and any special accommodations that might be necessary were placed on a back burner to be based on the psych evaluation. What I didn't know was that it would take 8 months to get an eval completed! We limped along with her education, trying different ways for her to learn (Thank you Mrs. Roberts for being so inventive!) I began to see a connection between her ability to learn and music. It did not matter how bad the music sounded, as long as it was music. I began singing the times tables around the house and making songs up about colors and numbers. She learned, not as much as I had hoped, but more than before.

So the following school year, eval done and all the bits and pieces of Mrs. Roberts and my experiments in ways for her to learn in hand, we sat down at the IEP table. Now, I had a healthy understanding of the IEP's focus and how the procedure went. There were teachers, therapists, a psychologist, an administrator and some others who just had to be there because they were supposed to be. We all shook hands and introduced ourselves. I might have been a bit nervous about what was about to happen next but, I did listen, and waited. I got a different prospective and realization about these professionals. In many cases, it was the rules and regulations and the laws that kept them from assisting. I was able to find some ground centered around my daughter's ability to learn better through music. I thought for a moment and then decided to just say it, no matter how absurd these professionals would think it to be. I took a breath and spoke, "I teach my daughter by making up songs that help her!" Some of the professionals were nodding at what I was saying and one, even smiled. She explained to me that the learning part of the brain is in a different part the part that hears, understands and enjoys music. "Wow", I thought, I wasn't such a nutcase after all! That moment brought with it a whole change of thought and prospective for this and future meetings, we thought of different way to use music in her learning and set up accommodations to work in that capacity.



The tone was set, from that time on, through Middle and Senior High School our IEPs and Transition planning went well. There were times when we had differences of opinions, and sometimes that was a good thing. What I found most important about the process is that most of our teachers care about the kids they are teaching, but they have restrictions and have to be compliant to do their jobs. I am really sure that many of them get frustrated and angry about how their hands are tied by the very system that is supposed to do it's best for every child. If there is respect between the parent and the school, if you don't walk into one of these meetings with a chip on your shoulder but instead you do have your facts and ideas ready for them, the meeting will go reasonable well and you will have given them a reason to respect you for your care and concern for your child and for them.

There are some times when there is no answer and other avenues and ideas need to be explored. When those times come around, I found that getting assistance from online sources is very helpful. I use The Central Florida Parents Center at times. (Although this is a Florida based organization, the information you can find on the site is of good value in many situations). I have also looked for information on ECAC.

If you can go into these meetings with a list of necessities and a wish list, offering it to the professionals in a respectful way, I believe they will do all that they can to do as much as they possibly can within the rules and regulations that they have to follow.

My girls are out of school now, although one is still in college and does take advantage of the accommodations offered by the Disability Department at her school, it is very clear to me that the IEP experience need not be one that can bring anxiety and upset with it.

Learning to Embrace Homeschooling our Special Needs Child and Why it Wasn't Easy

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She was absent, more than she was present due to frequent hospitalizations and illnesses.  She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make...

I would be lying if I said it was an easy choice to make.  The road to acceptance was long and difficult with many bumps along the way.  Homeschooling our daughter was not something that had ever crossed our radar as parents.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace. The inability to help her succeed in public school, and what at first felt like a forced decision to homeschool honestly just felt like one more thing that her disease had taken from her, when in reality we were looking at it from all the wrong angles.

There were many days in the beginning that I felt as though I was failing her.  As she would sleep the days away unable to be alert and present for lessons I neglected to see how we could benefit her any more than her previous educational arrangements.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that control might be some family's reason for choosing to homeschool, that created an intense fear in me that kept me from being able to fully embrace it.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. We have the ability at home to work around her, which is nearly impossible in a public school setting.  She sleeps when she needs to, and we school when and where she is able.  If that means we are doing lessons on the Ipad from inside her hospital bed, then that is where we do them.  Although we cherish the days where we can break out into the fresh air or get down and dirty with hands on activities we know those are blessings that we can not take for granted.  We never know what the days will be like for her.  While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop, with lingering hope that we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Adapted from "Embracing our Path to Homeschooling," originally published on Learning to Let Go; A Different Dream for Us