I feel like we are standing at the foot of Mt Everest, getting ready to start heading up without equipment.  I am and hoping and praying that we are going to find the right people along the way to help equip us with what we need.  This adventure has the potential to be a wonderful and enriching experience, or a terrifying trip that could end in disaster.  So, what in the world is my Mt. Everest?!?  It’s the education system.  Sydney turns 3 this summer and we are starting the process of putting her into the school system in the Preschool Program for Children with Disabilities (PPCD).  It all starts with an introduction meeting with a rep from the school district and signing papers to let the process begin.  The next step is for Sydney to get evaluated by the school specialists.  I am still not sure who all have evaluated her, but there were several people who watched her at her current daycare over several visits. 

Now think about the pressure in that…  Strangers will go watch your child and decide what she can and cannot do by observing her in school.  There is also a form that I fill out as her parent and her Early Childhood Intervention (ECI) Specialist also fills out an evaluation form.  The ECI specialist has been with Sydney weekly for the last three years, so knows her pretty well.  All of these reports will be compiled into an Independent Education Plan (IEP) that will determine what services Sydney should receive, how much she will get and how often.  The school puts the IEP together and then calls a meeting where it is a many to few situation.  Randall and I will bring our ECI specialist to a meeting with a host of elementary school specialists, teachers, mediator, principal, etc.  We will sit across a table with this panel of people and go through the IEP and sign off or debate the goals and objectives for Sydney for the next year.

This all sounds good and diplomatic, so why would I be so concerned and worried?  Because of the horror stories of those who have come before me.  There are countless warnings from parents of older kids “Don’t sign it at the table, always bring it back home”, “Don’t let them be vague with the objectives”, “Don’t let them be too specific with the objectives”, “Be sure to demand full inclusion”, etc. etc. etc.  Everyone is trying to save you from doing the wrong thing and learning the hard way, but it is SOOOOO hard to know what is a good IEP and what is a bad IEP.  Basically, the message that you get is make sure it is specific enough but not TOO specific… make sure it is vague enough… but not TOO vague.  Oh and by the way, another mixed message is “Make sure that you don’t let them label her Mentally retarded (MR) so that she isn’t excluded” vs “Make sure that she is labeled MR so that she gets more resources”.  Top this off with the form not asking me what I would like for Sydney to learn, it just asks some very vague questions about why/how she is disabled.

AAAACK!  What is a mom to do?  I do feel fairly well about the meetings that we have had.  I asked the school to come to the house to see Sydney in an environment that she is comfortable in.  She is doing well at daycare, but hardly speaks or signs.  At home she is a chatterbox.  Yesterday we had the meeting at home and Syd was stubborn, but showed her more chatty and interractive side.  Whew!  I was a little concerned at first since she was saying “NO” every time I asked her to do or say something.  She warmed up quickly and they said that they were glad that they came by.

It was my first act as an advocate parent to ask for the home visit which wasn’t part of their original plan.  They have been receptive so far.  So, here we are at the bottom of Mt Everest, craning my neck to look straight up at a trip that will take at least 15 years (she is just 3).  At this stage I cannot see the top, but I know what it looks like because others have been there before me.  I have heard many stories, some are cautionary tales, some are horror stories, some talk about how difficult the climb is, and others tell of the glories and amazing scenery along the way.

We are taking our first steps of this long journey, but I know that we do not walk it alone.  There is my amazing husband, friends, family, DSACT and great organizations like DownsEd who can walk with us, guide us, lift us up, and sometimes carry us.  Most importantly, we keep our eyes on God and pray that He will carry us through this journey.