Friday, March 19, 2010

He is doing great, but...

**Just a little note that I wrote this post and really had to decide if I wanted to share this little facet of our lives as for Gabe it is personal and fairly revealing, but I want our lives with glaucoma not to be something he is ashamed about, or what defines him, but a challenge that he works through with our help!
Can I just spend a minute of your time telling you how wonderfully Gabe is doing? I will tell you why in a minutes, but for right this second I want to sing a few of his praises:

-He has picked up the english language so well in 6 months that everyone is amazed!
-He is extremely outgoing and friendly.
-He checks out everyone and everything and is not shy at all.
-Gabe will try almost anything once.
-He has a great sense of humor! Example, tonight he was not Gabie Xulu, he was monster truck "vroooooom"!
-He participates in group activities.
-He separates fairly easily as long as it is a familiar place or person.

Ok, so now why do I feel that I need to list those, well this week we had an interesting 'home visit' from our local ISD's social worker. This is a normal part of the IEP (individual education plan-aka special education) process. Without taking an hour typing out the whole visit lets just say that when we began the process of getting Gabe help with his vision, I thought that by saying, "congenital glaucoma of both eyes" was a moderate no-brainer. Ok, so it wasn't, so let throw in 'vision loss', or even "highly myopic".
(Here is Websters definition for myopia: 1 : a condition in which the visual images come to a focus in front of the retina of the eye resulting especially in defective vision of distant objects 2 : a lack of foresight or discernment : a narrow view of something)

Nope, still didn't do it. Apparently that little meeting we had a month ago where I stated that I wanted Gabe to receive services to help us and most importantly to help him with his vision loss and to help him be successful in school, I didn't give enough reasons why we feel that Gabe needs this! So, back to this home visit, the sw asked us why we wanted to label our son. So, I spent all of an hour telling her all of his negatives, how he runs into things, how he has difficulty seeing details, seeing the TV, seeing books, etc and the list goes on...Hmmmmm...this really got me thinking something was up after she left. (and not feeling so good that I just spent an hour talking in the negative).

What I thought was, "I think that they don't want to give our son the help he needs???" 2 sleepless nights later, and a call to the director (who is wonderful and a huge advocate of children) of Gabe's daycare (and preschool next year) and found out that yes, this is the case. Really?? I mean really?? I have seen kids with food allergies get IEP's, but my son with moderate vision loss doesn't qualify under Vision Impairment guidelines?? Trust me, if we didn't feel that we needed to do this, we wouldn't! If I could take away the glaucoma I would. No one is going to look at Gabe and say "Hey look at that kid with an IEP!" But there are going to be times when he is in school and maybe it is a book the teacher is reading at the front of the room and he cannot see it, or the teacher uses and overhead projector most of the day, the list could go on. It is my job and was my promise to make sure he has an extremely boring and normal life (ok not so boring around here), not a life where he has to struggle daily.

Well, Thank you Dr. T for writing such a great explanation of Gabe's glaucoma because we got a call yesterday saying that yes, they were going to give my son their help! Thank you Lord for helping us over that hurdle!


  1. So sorry that you had to stuggle so much just to get your son the help he needs. I hope that this is a step toward Gabe having a more boring life. :)

  2. Way to stick to your guns and be Gabe's number one advocate! I have a feeling we are going to be walking that road ourselves one day...