Gavin's eye pressing has moved to a whole new level. I knew this day would come, but I thought it would be later, and hoped deep down inside it never would come. Along with the fists in his eyes and pressing down on his eye sockets, he is also getting his index finger and pressing on top of his eyelid on top of his eye, and pressing back, deep into his eye socket. Almost as if he is gouging his eyeball out. It is done with force, and the first time I saw him do it, I broke down in tears. In the back of my mind, I had been watching out for this, and when he did it, and got a new sensation, I knew it would be another level of habit to try to break.
I think I have stated before, my days are dependent if it's a good or bad eye pressing day for Gavin. If it's bad, then almost all of my list of to do's are written away, and my agenda for that day is to keep his hands occupied and out of his eyes. At times with mild restraint, and I know that sounds barbaric, but at times it is needed. Today, is a bad eye pressing day. A bad eye poking day, and I am just now getting my break to shower and eat since he has just laid down for a nap. I am exhausted.
I think we will be moving forward with purchasing the rec specs/goggles and the snuggle wraps.
Just another little affirmation to those parents out there who are going through the same thing. I know in the end it will all be worth it, but I feel your pain and your exhaustion.
Don't give up, I know at times I want to because it's easier to just let him poke.
Hang in there. I'm trying to.
Keep strong. I see a correlation with the eye rubbing and the rocking. I agree it does need to stop before the habit continues. It feels like the never ending road and so many times I wish when I woke up magically it would disappear. Please make sure you are getting a break with family members and-or friends who cherish your son like you do. You need to catch your breath and take some time for yourself. It can push you to the end of your rope, but stay strong. 3 years later I can say that was the toughest part yet.
ReplyDeleteCarlie, (Ireland, 3 LCA CRX gene)
Hi Jen,
ReplyDeleteI know you've probably scoured the bookstores for books on raising a blind child, but I wanted to share one I came across once in my own journey as I think you might find it interesting and possibly useful.
It's called "Elizabeth" by Sharon Ulrich and you can find it here: http://www.alibris.com/search/books/qwork/2005836/used/Elizabeth,?cid=g0NSyUqg6bChmjnYiXGAVw==
I wish you luck on your journey and remember there are many different ways to see a sunset. :)