May I ask...

Today I had someone very politely ask me about Gabe's eyes. Did they automatically know there was something up due to his glasses? I have seen countless blogs of little ones from China home and wearing glasses. I have to wonder if Gabe had been looking very closely at things which made her wonder?? She did however, ask very nicely if she could ask "to what degree..." and pointed to her eyes. I got the hint and openly volunteered that he had glaucoma of both eyes that was under control...same story every time. To see the look on peoples faces when I tell them though, sadness, pity, worry??? That bothers me to a certain degree. Gabe sees great, for well, Gabe! He does everything all the other 4 year olds do. He does not need sadness, he his perfect! He has his glasses now, he is home, and he has all the toys a kids could want (ok, who am I kidding, he always wants more!).
Here is a link to an article which I have seen another version of the same thing about how Chinese are more likely nearsighted: http://www.8asians.com/2010/06/18/chinese-more-likely-to-be-nearsighted/

On another note, my MIL was out with the kids this past week and they ran into a teen who just could not get over how cute Gabe was, because...he looks like Aaden Gosselin. I have heard this one more than once too. It cracks me up,(I had to look Aaden up as I have never seen the show) but Jon Gosselin isn't Chinese at all he is half Korean a quarter French and a quarter Welsh. It appears that he has inherited more Korean characteristics as he looks more Asian. His mother is Korean but was born and raised in Hawaii. This was stated on the Korean American Journal. Just a bit of useless trivia for you all!
So what do you think? Aaden and Gabe-could Gabe be his look alike?

Updated eye appt.

Gabe had an eye exam on Wednesday. It was in office and Gabe was a real trooper again! The nurses and our doctor was just amazed at his language in 9 months! Dr. could tell that his pressure still looks very good and there are no cataracts forming!
Yay!!
We will head to Munson in Dec. for another under anesthesia eye exam and we are going to order him transitions lenses in the next couple of weeks. Dr. has seen the transitions help some people with glaucoma with the brightness and sun.
I have to say that I was filled with a lot of anxiety for this appt. We have not seen any changes in his vision at home, but it is in the back of my mind..."what if..." After all this little boy has already been through, I do not want him to worry about this!
Summer is here and Gabe Xulu is enjoying the outdoors...he would be outside 24 hrs a day! He loves the trampoline and the sandbox! We cannot wait until beach weather is here to stay!

No Hands But Ours

Gabe's story is on the web for families who are considering adopting special needs to read. It is my prayer that by reading it, families will open their hearts and minds to not only waiting boys, but children with vision needs. Click on this link and then click on family stories-ours is the first one!!

http://www.nohandsbutours.com/

All Set

Gabe's IEP is all set and ready to help him as he needs it. This plan is speical educaion, but not how one might view special educaion in a negative way. So many view those words as something bad or negative. This is a plan to help Gabe be successful if he should need it. He will not be pulled out of his classroom and sent to the 'special' room, but instead the vision impairment specialist will be in contact monthly with Gabe's teacher for any questions, or needs on how to make things easier for him. Right now at preschool there not be much that needs to be done, but Gabe is the first vision impaired child our school has seen in many many years. Gabe's wonderful teacher for next year already has some great questions and our #1 goal is to make things normal for him! This is scary territory ans yesterday I had to speak up and say, "Hey, some things that have happened over the last couple of weeks were not ok." (Which was very hard for me as I hate confrontation/conflict). So, this is a good thing. Asking for help is ok. And one thing that I keep saying to myself is the comforting words of my Jesus saying over and over , "Do not fear!"

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!
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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!

Tests??

Since coming home, Gabe has been thoroughly seen for his special need-his glaucoma,but has really not had much medically checked out. We asked the doctor to perform the recent stool samples for parasites etc which can be common in institutionalized children. However, we have not had anything looked into for low iron, things like hep b, lead, or any flags raised about his low weight. Recently I asked an adoption community I am a part of if this is common. Many thought that yes, we should have had all this done or at least should at the 6 month mark. Well, in the next couple of weeks we will be hitting 6 months. So, my friends shared this link to the American Association of Pediatrics brochure for Internationally adopted children http://www.aap.org/sections/adoption/healthtopic/BrochureEasy-to-read.pdf that I plan to take to our doctor this week to see what they think Gabe should have done. I would like them to be monitoring him a little more closely as he is only in the 5th percentile as far as I can tell.

Also, yesterday Gabe was observed by the vision impairment specialist that will be working with him. She really wanted to get to know the child, not just a name on the paper-isn't that wonderful! She agreed that he is not anywhere near a 4 yr old developmentally and she thinks that he would benefit from going to the center more than 1 day a week. So, we are going to work on that in late March. He loves going, but I think it may be hard on his Ayi to let him go as she is really attached!!

Looking to the future

Today we started down the road that I have been on as a teacher many times, but as a parent-a first. Today we held an EPM (Educational Planning Meeting) for Gabe. It is funny as many of these as I have been to, I am still surprised at how strange it felt having it be "my" child we were talking about. It was very intimidating walking in and seeing the table of 7 education professionals sitting there. There was OT, Speech, vision impairment specialist, Teacher consultant, Center director, classroom teacher, and School psychologist. At this meeting we begin the process of getting Gabe Special Education services and to see what he needs right now and what he may need in the future to help him to be successful in school. We will have another meeting in a month to put the plan into place for him.
Right now Gabe is doing great-having only been home for 5 months he is doing wonderfully, but there will be a time, when he may need some help especially for his vision loss. It was very frustrating for me that after we came home, I found that in our area we do not offer much for children who are delayed between the ages of 3 & 5. As great as he is doing, Gabe is still very far behind other 4 yr olds in all areas. It is my hope that after a full summer home, running and playing, that we will not see a need for OT or speech. But, I wanted it to be in place if he needs it after school starts. That being said however, the need for services for his vision will not be something that goes away. He may become more comfortable with his glasses, he may get more used to them, and his eyes will continue to grow. But, there will be things that are going to be out of the 'norm' for my Gabie and I want him to have every opportunity that he can and to be successful.
So, during out meeting we agreed that Gabe will have a 'working' file and we will revisit his needs as next year (preschool) begins. Right now he is still adjusting, so the need for OT and speech may diminish as time goes on between now and Sept. The vision impairment specialist will continue to monitor were Gabe and his teachers need for support as right now in daycare they are doing a wonderful job accommodating him. Taking it one step at a time :-)