About Geri

My name is Geri; I am married and have 4 wonderful children. My family and I live in Boise, Idaho, and yes our football turf is really blue. My youngest daughter Emily is my inspiration for this blog. Emily was diagnosed with a rare genetic syndrome 18p- which effects 1:50,000 live-born infants. My blog at http://emilyanned.blogspot.com details how I feel about raising a child with special needs and how I navigate various systems to better my daughter’s future.

It’s the Little Things

(Guest post by Geri Kochis – Geri blogs at EmilyAnn)

As a warning – This post is my own opinion and I apologize upfront if I offend anyone.

In the Geri dictionary, Cheerleader would have had following description: cliquish, flexible (body), high energy, lot’s of makeup, crazy parents, revealing clothing, and popular (kids/teen/adults).

Emily joined a special needs Cheerleading squad in October/November of 2010 (Idaho Cheer Spirit). This was a competition squad, so they did more than just practice. I wasn’t sure how it would turn out and really concerned she wouldn’t perform well enough. The kids not on the special needs squad also worried me. Most of children (even adults) don’t know how to react to Emily. It is not uncommon for her to walk up to strangers and say she likes their shirt or shoes, or just say random things. To make it worse, Emily has bi-lateral hearing loss along with 18p- so her speech can be hard to understand at times. The response to Emily is usually, umm.. ok and then a confused look directed at me. I didn’t think Emily would fit in with her traits combined with my thoughts on Cheerleading. Here were are 5 months out and a National Championship later and I can admit I was wrong about everything.

Not only did Emily’s squad welcome her with open arms, but so did the entire gym (Idaho Cheer). No one cared that she would say random things, or sometimes get distracted by the other squads tumbling. The promoters/producers of the competitions made the squad feel special and they always received at least medals. The support from all the parents (different gyms, states) at the competitions was great. I can’t think of once where the entire crowd wasn’t cheering for our girls. The spirit squad had great coaches that always encouraged the girls to do their best without discouraging.

Idaho Spirit has had junior coaches. These coaches were girls from another squad with an age range of 11-15 (maybe a little order/younger). I have never in my life encountered girls that age who were so accepting of differences and truly cared about the girls. The parents of these girls should be proud.

This past weekend Idaho Cheer Spirit earned the title of National Champions (along with 4 other special needs teams) in Anaheim California. Cheerleading has made such a difference in Emily, and me as well. The Geri dictionary has definitely changed.

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Difference in School

(Guest post by Geri Kochis – Geri blogs at EmilyAnn)

I recently attended an IEP (Individualized Education Program) meeting for Emily who is in 3rd grade.  These meeting are held annually to go over her progress the past year, and develop goals for the next year.  The people who attend these meetings makeup the IEP team.  This team is tasked with making sure Emily receives a FAPE (Free Appropriate Public Education) in the LEA (Least Restrictive Environment).

Emily is currently educated in a general education classroom and goes to a resource room for specially designed Math & Reading instruction.  The IEP team (minus me) think that Emily would be best served educationally in a segregated classroom at a different school.  Emily is not a behavior problem, she just needs additional instruction and is slower getting her work done.

Segregated classrooms are not the answer to kids that learn different.  Segregated classrooms are not going to teach the other 3rd grades that it is okay to be different.  Emily will also wonder what is wrong with her and why it is not okay to be different.

I know some schools do a good job of realizing that Different Iz Good, and I hope one day all schools will do the same.

Every Journey Must Have A Beginning

We didn’t find out until Emily was 6 that she might have a genetic disorder. I didn’t think it was possible, when I heard genetic disorder I think of Down Syndrome.  One of my aunts has Down Syndrome and I knew she didn’t have that.  We knew she was delayed and had been since birth and had various medical problems.  You don’t see many full term babies in the NICU for 63 days, on a vent, and had to have CPR in the delivery room.

The first genetic disorder she was tested for was VCFS (Velo-Cardio-Facial syndrome). We learned all we could while the FISH test came back.  Two weeks later we were negative for VCFS.

The developmental pediatrician thought a trip to the Geneticist was need.  He gave Emily a clinical diagnosis of William’s Syndrome during the appointment.  We were so happy to finally have a name for Emily’s collection on symptoms.  He ordered a blood test to confirm.  The blood test came back negative for the Williams Syndrome (she had both genes).  The Geneticist decided to keep the diagnosis until something better came along or more symptoms.  I was happy with William’s Syndrome, it was very well studied and I had a good idea of what we would be facing in the future.  It was about 6 months later and we knew it wasn’t William’s Syndrome and I was concerned about possible medical issues that weren’t explored because we didn’t know what was wrong.  I requested a referral to Primary Children’s in Salt Lake to get a second opinion.  That Dr. ordered a DNA microarray.  The 6 weeks to get the test back was awful because there was a very good chance it would show everything was normal.  The first words out of the geneticist mouth when we got “the call” was “The test did show a small deletion on one of her Chromosomes”.  I then held my breath while thinking please please don’t let it be a bunch of number.  He then went on to explain Emily has 18p- Syndrome and she was missing the top part of the p tip of Chromosome 18 (18p11.32 to be exact).  He went on to explain they don’t know a lot about but there is a website that can give me more information.  This was more heartbreaking to me than the confirmation of a genetic disorder.  My fear came true on that day, Emily has a genetic disorder that is “numbers” and they don’t know a lot about it.

This is my intro blog, so if I get around to posting more everyone will understand why Emily having a “bunch of number” for a genetic condition causes me more heartache then the condition itself.