Wednesday we had Eli's parent/teacher conference. I was in such a bad mood before we went in I thought for sure I would be a blubbery mess. It didn't help that I only had a few hours of sleep. I brought up a lot to them. I explained what was going on medically currently. How the cardiologist is concerned that the oxygen is not going to the brain properly because the blood is basically flowing up his right vertebral artery and down his left vertebral artery into his left subclavian artery into his left arm (they used part of his left subclarvian artery to repair his original coarc so it can't flow back into the heart that way). How the neurologist wants to see him because he believes it is very possible, this would be giving Eli basically a hypoxic-anoxic brain injury. These type of injuries are OFTEN not visible on a MRI. They cause A LOT of symptoms and problems. I talked a lot about symptoms and problems we are seeing and they are seeing the EXACT same things. I mean he's so bad they have to strap him into a chair. *Note to self: I must get one of those.* They are also concerned because they see his symptoms getting worse as do DH and I. They also mentioned his flat feet and the way he walks. They think he overwhelmingly needs inserts. He has them, but if he needs a bigger size we have to go out and pay for them again. They are going to see if someone who has worked with the insurance companies and worked their magic can help us even. I don't think ANYONE has EVER believed me when it comes to his feet. Although people do comment on his "funny little walk". I was just so relieved they see I'm not imagining things. Honestly the relief makes me cry. So he will be staying in DD preschool another year. They just don't think he would do well even in DD Kindergarten. I honestly wasn't in favor one way or another I just want him to be successful and I knew regular kindy was not going to work. Now I don't have to worry about it.
I'm glad the conference went well! That's awesome that your district still has the DD Kindergarten program! Ours dropped it a few years back due to budget cuts and I see kids all the time that really need a program like that. They just need a little more time to get some things worked out before joining their peers in reg ed.
Are they using a Rifton or a Chairies chair with him? Are they using the belt because he can't balance in a regular chair or just to keep him still for instruction? Just curious. I didn't realize he was having those types of issues.
I have no idea. They showed me, but I don't know the names. What's the difference? Do you have pics? They used one and they couldn't keep him in it so they moved to another one which they didn't fully strap because he mainly needs it for keeping him still and attempting to help him pay attention. But then they had to fully strap him in because he kept playing with the straps. He apparently is getting worse and worse. They also notice he doesn't have the stamina. That was one of the other reasons they are not putting him in DD Kindy. They told me they have kids go to DD Kindy when they need just a little bit of help and would do okay in a smaller class, but he can't even do it then. We also think that because of the brain issues he may be having eye issues. We did go to the eye dr, but apparently the eye problems he would be having an eye dr would say he is fine because it's in the brain not the eyes. I could see on their faces they realize that's probably why he has problems with stairs and tilts his head, etc.
Sounds overwhelming, but also sounds like he's getting some really good care! It must be somewhat of a relief to know you're not the only one seeing some of these things. I know it was for me after Clara's assessment.
The two chairs are very similar, both wooden with a "seatbelt." I've used them with children in the past, but our district has very strict policies about restraints and we are no longer allowed to belt them in (unless their balance is so poor they'd fall out otherwise). They really are a good tool to keep children put for short periods of time so you can instruct them. Most chairs even have a tray (similar to a highchair, just smaller) so the children can work in their own little space, away from others. I'm glad Eli seems to be benefiting from the chair and it sounds like he has excellent teachers.
WE are here for you.
Thank you ladies.
Tanya - The chair they use is a seat2go. They tried the feeder seat, but it wasn't what he needed. I really like his teachers. Especially since they were really honest and admitted they have the same concerns we do.