IEP Virgin- A Parent’s Perspective Guest Blog

This next guest blogger is a new friend of mine from the Social Media World.  She is an advocate for both of her children with Autism.  She is an inspiration to those who read her story.  She needs no introduction, as her story will tell you itself.

Last spring I began the “IEP process”.  It began very friendly and I innocently bumbled through the first few meetings for each child. I was an “IEP Virgin” – having never gone through the ETR nor IEP process for either of my children until then. I filled out a few questionnaires, sat through a few meetings for both my children and generally felt most of the children’s needs were addressed by the IEP’s the team wrote.  When I questioned a specific need that I felt should be spelled out to be clear, I was told by the team that was unnecessary that the school “knew” my children and of course would adjust accommodations as needed to ensure my children were given all the support they possibly needed.  After feeling I had gotten the children the support and accommodations they needed, I signed off on the IEP’s and enjoyed my summer off.

I was an absolute fool.  And for the next year, I had to fight dirty, curse like a sailor and pull out all the stops to right those wrongs.  Oh, and I had to take my grandmother to all the IEP review and reassessment meetings once the school year started and I found out I had been swindled and lied to.  My grandmother has been dead over 20 years.  But she was the best advocate my children ever had.

I was probably seven or eight the first time I walked in my grandparent’s home and saw my grandmother’s body lying flat on the cold, concrete garage floor.  She had unsuccessfully attempted to end her life with a drug overdose due to the emotional pain she felt from her mental illness.  Although she was diagnosed in her lifetime with major depression and anxiety, I would make a strong argument that she was misdiagnosed and was truly bipolar like myself and my eight year old daughter and ten year old autistic son.  I never forgot the image of her unconscious on that garage floor or the pain I felt not knowing if she was gone forever or not.  But I knew already at that young age why she had attempted to take her life.  My grandmother was a very unstable woman who searched for inner peace and an end to the demons that plagued her throughout her life as long as I can remember.  Sadly enough, she never found either.

When school began the fall of 2012, of course the inevitable standardized testing began as well.  I found out very quickly and very rudely just how the public school where both my children had attended since Kindergarten were treated now that they had formal IEP’s. In a word – horridly.  I was flabbergasted, insulted but worst of all, I had been played for a fool and I knew it.  Every time I had a phone conference with the Intervention Specialist to make specific arrangements for either child’s “standardized test of the week”, when I would point out an accommodation promised to me by the IEP negotiated the prior spring – I was rudely told that wasn’t what the IEP stated in writing and ONLY the accommodations specifically spelled out in writing could be given.

Looking over I.D.E.A.’s  (Individuals with Disabilities Education Act, 1975) approximately 162 pages, I quickly learned that recalling and quoting each passage was not going to happen quickly enough for me to help my children in this school year.  I did learn that the parent can call for a meeting to reassess the IEP and how it may need amended to best meet the need’s of the child anytime and as many times during the school year as the parent desires.  So with my grandmother who struggled with education never finishing high school and who fought inner demons that both myself and both my children share through bipolarism, I decided the school district had just tried to pull the wool over the wrong parent’s eyes.  

My grandmother married my grandfather when she was just 17.  She quit school without a diploma or G.E.D, a decision she regretted for the rest of her life, and began a family that eventually totaled four children.  She often spoke to me like a peer, on the days she could stand to pull back the curtains and allow the light of day into the house, when she would welcome my company as a brief release from her long, dark depressions.  Although she loved her children, motherhood and marriage were terribly hard on my grandmother.  There were weeks that would go by at a time when you’d know she was home, but all the lights in the house were out and no one would answer the door.  I never forgot the way my grandmother listened to me like I truly mattered, looking back now perhaps she did because she understood what it meant to exist yet not be of any importance to anyone.  I was an only child in an unhappy marriage of two people too busy working to have much time for me.  She was a middle-aged woman who never recovered from finding out she was adopted, who was trapped in a loveless marriage due to a lack of even a high-school education and who could never stay far enough ahead of the demons of mental illness to ever know happiness.

It seems like an unlikely decision.  Why would I think of a relative who has been dead over 20 years when I’m trying to clean up an IEP mess with the public school system?  Because I look at my petite, underweight bipolar daughter with her pale skin and huge blue eyes and know that she will likely end up on a garage floor, or hanging from an attic rafter or something just as terrible if I don’t fight like the devil myself to ensure she is given fair accommodations under the I.D.E.A. Law and ensure she continues her education instead of being trapped by poverty like so many others, like my grandmother  with mental illness.

That’s how I began making phone calls, then asking for supervisors, sitting in on my children’s IEP review meetings and eventually demanding that they be four hours long minimum.  I don’t sign any version of an IEP I don’t agree with regardless how strongly the school pressures me.  I never feel pressured to “either sign or sign in the box you don’t agree, Ms. Hobbs”.  No, that’s not true either.  I have the right to take a copy of the entire IEP home and read over it until I decide whether or not to sign it or reject it.  I have learned the school will misrepresent and downright lie over what’s legal and what’s not.  I have also learned to get all communication between the school and myself in writing.  I was amazed at what the principal wasn’t aware of when I brought copies of emails to meetings.  I called the state’s Coalition for the education of special needs students when the school insisted that I sign an amended version of my son’s IEP and wouldn’t give me the complete document to look over.  I also enlisted them to sit in on future IEP meetings.  It’s nearly the end of June and school was technically over on the 7th.  But the school and I still have another IEP meeting scheduled.  Grandma and I will be there.

Jodi Hobbs writes about special needs parenting who contributes regularly to The Gallipolis Daily Tribune, is a regular contributor to www.dandelionmoms.com , and blogs at www.throughthehardtimesandthegood.blogspot.com.  You can find her Facebook page at Special Needs Parenting: I did NOT sign-up for this and join her on Twitter @JhobbsSaunders . She welcomes readers questions and concerns at snp.ididnotsignupforthis@gmail.com .