Tuesday, September 20, 2011

Evaluation: Then & Now



We are beginning the process of re-evaluation this week for Elizabeth.  And as we work on it, it's always interesting to me to look back on how far we've come from where we were and how far we have to go still.
When we first started this journey it was with great hesitation on my part.  People had been trying to tell me that they thought something might be wrong with Elizabeth.  Finally, to stop them talking and harping on me I took her to Screen 4 Success a program in Kansas that works with Rainbows - an organization that helps disabled children and children with delays.  I took her not know what to expect but with a little worry nagging me in the back of my head and Elizabeth failed.   Let me rephrase that - Elizabeth BOMBED!!!! the tests.  At this point, I got a "counseling" from some young woman who proceeded to tell me what I needed to do to discipline Elizabeth.  I was already feeling crappy at this point, so that pretty much finished me off.  I looked at her sheet and let her finish, and then I not so politely finished her off.  I wasn't some uneducated, uninformed and not involved or engaged parent.  I had a college degree and I did have rules, structure and boundaries, but they seemed to fall on Elizabeth's seemingly deaf ears.  So we got things set up to meet with the social worker at Irving Elementary School and begin testing Elizabeth to find out how delayed she was.  I have never wanted to smack my own mother so badly in my life - especially since it was her idea to get her tested.  Why couldn't she have left me alone and let me live in denial a little longer?  NOOOOOOO she had to harp on and on - at least that was what was running through my head on the drive home from the Screen 4 Success.  Now I know she only had good intentions and I wasn't really upset at her, I was mad at me.  Although, in hindsight it might have been better for her to be so pushy AFTER my husband came home for Iraq and in one piece.  
So we started the evaluation process and they kept pushing to go forward and I finally was blunt with the.  "Look, my husband is overseas and I'm already overwhelmed as it is with everything else going on so we need to wait until Chris comes home.  I can face then when Chris comes home, not before then."  What I was asking was this, "Please stop, I'm drowning already and I need you to go away for a little while so I have my support system back before I face the reality that something is wrong with my daughter."  So we shut the house up and locked ourselves in and rode out the rest of the deployment and he came home.  He was safe and home and we were happy to have him back and September came way to quickly.  I couldn't put it off anymore, but more importantly I didn't feel the need to put it off.  I had Chris at home to help me go through this, so I wasn't alone anymore.  More importantly, I wasn't as overwhelmed by everything that a deployment requires of  spouse of a deployed soldier.   
September 2005 we resumed testing on Elizabeth and I let our pediatrician know that she had failed the testing at Screen 4 Success and she made a few phone calls and got us in to see Dr. Valerie Kerschon  in March.  Dr. Kerschon works at HeartSpring and organization started by actress Susan Dey (think Partridge Family and L.A. Law and that's her) to help children who were disabled.  She is a behavioral pediatrician who works there and we met with her and she played with Elizabeth.   

January 2006 saw us sitting in our first ever IEP/Individual Education Plan for Elizabeth.  We left feeling as if all the air had been let out of sails.  It was terrible and disheartening, because the initial IEP is always the one where they discuss where your child needs help and how poorly they are doing.  It's heartbreaking to sit there and feel as if they are tearing your baby to shreds with a microscope.  In some ways it felt as if they were judging me as a parent.  I was devastated and depressed.  The plan was to put her in afternoon school at Little Early Childhood School - it a school in Wichita designed to help children with special needs and delays.  So we started with a bus, Elizabeth loved it and loved her teacher Mrs. Tripoli and they fed her lunch, which she thought was great and would have loved even more if she had actually eaten food like a normal kid (what can I say, Elizabeth likes Elizabeth likes).  

In came March 2006 and it saw us meeting Dr. Kerschon and saying some goodbyes and preparing for me to have gastric bypass.  By May surgery was done, we had the video tape for Dr. Kerschon and I was positive I knew what the diagnosis would be. . . Autism.   Everything I had read in the assessment forms I had filled out and that I saw while making the tape of Elizabeth in Preschool class showed me what I hadn't wanted to see for a long time.  My daughter was autistic.  But until I heard it come out of the doctor's mouth I didn't process it completely.  It is one thing to know in your heart but to hear someone actually say it out loud.  Someone who has the power to put it on paper and make people pay attention - there is usually a glimmer of hope.  As reality began to sink in, I internally flogged myself.  I had failed my daughter, if I had quit my job when Chris deployed, if I hadn't eaten tuna when pregnant, if only's ran through my head.  But that was then and this is now. 

Then Elizabeth was barely verbal and used a lot of jargon (or what I called gobbledygoop) to talk.  I was her translator and even I struggled to understand her sometimes.  Now Elizabeth can talk the hind leg off of a mule.  Then Elizabeth would only willingly let Chris and I hug on her and love her.  Now she loves to get hugs, snuggles and love from her grandparents and others.  Then eye contact didn't really exist, now she needs some prompting, but is making better strides.  Then social skills didn't exist - she was left out of class activities by her peers because she didn't know how to ask to join in play.  Now there are some children she plays with regularly in our apartment complex.  Granted they tend to end the day fighting, but the fights must not be too bad, since the kids come back and ask if she can play daily.  Then food was picked over and sometimes she would plainly refuse to eat.  Now she eats, she may not like what she eats, but she realizes there is nothing else, so she better eat what we fix and make the most of it. 

We still have a long way to go and some things we face may always be a challenge.  Sitting in the music portion of church may always be a challenge (the voices that don't sing on the same pitch are a lot for Elizabeth's ears to take).  We may never fully tackle and conquer all of the social situations.   She may possibly ever only have two volumes, loud and louder, but looking at where we started from and where we are now, I don't count anything out.     And as for blaming myself - no, not anymore.  I came to a point where I realized that what was done, was done and that I could not wallow in guilt because it wouldn't help me or Elizabeth.  It took a while, but as she began to improve, I realized that I hadn't messed her up beyond help and that if she could move forward then so could I.

I hope you all have a good week.  It's going to be a busy week for us with Re-evaluations at hand and regular every day things going on, but for now life is good and I hope it's good for all of you too.
In Christ,
Maureen

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