Spring is in full swing here in Florida, and everything seems so fresh and beautiful.  As happens so often, though, I think of what Gabriel misses out on.  The rest of us are admiring the blooming flowers or the butterflies, and Gabriel is blissfully unaware of it all.  Sometimes I pity Gabe for how unaware he is, and then he promptly shows me that it is I who am unaware.  I was gently reminded  of this once again the other day in the park.  I was watching pelicans out on the water, wishing that Gabriel could see them, when he suddenly layed down in the grass and started feeling it and rolling in it, laughing with delight the entire time.  Grass....how many of us actually give grass a second thought?  Gabe's blindness robs him of certain experiences, but he experiences the things he can so fully that it is sometimes enviable.  And so I laid down next to Gabriel for a moment and let him teach me how to be more aware.
     Gabriel is just about two and a half years old now, and has finally started talking A L:OT!  This is a welcome development, because three months ago a speech therapist determined that Gabriel was 10 months behind in language.  His language skills are improving quickly now, as he is using new words every day and is starting to talk in 2-3 word sentences.  Speech is a wonderful thing, and it has given Gabriel some control over his life.  He can make a decision, whether it be about what he wants to eat, or what toys he wants to play with, and he can now verbalize that want. 
     One thing that I hadn't truly considered before Gabriel started talking, was what his expectations are.  I have become quite good at describing and talking about things as we do them, but I hadn't been consistant in talking about things that we were planning to do.  For instance, Gabriel and I drove to Publix to go grocery shopping, and as I parked the car he became very animated and said, "Go go Spielplatz" over and over again.  That is baby German for go to the playground.  In his mind we were about to go play.  He had no way of knowing where we were, because I hadn't told him.  He was very upset, and I felt terrible.  Luckily, upon being put in the shopping cart he started saying, "go get cookie", so all was fine!  We now tell Gabriel our plans ahead of time so that he knows what to expect. 

     As Gabe's language skills develop, we are also working on his pre-braille skills.  We are lucky that he has always enjoyed "reading"  through touch and feel, textured books.  He has never shown tactile defensiveness or sensitivity, which can be quite common in blind children.  The textured books, which also have braille lettering in them, help teach the concept of reading.  Every time I think about teaching Gabe Braille, I get over-whelmed.  To me it just seems so very difficult.  Visually, I can tell the different Braille letters apart, but as soon as I close my eyes and try to feel the small dots, they all seem alike to me.  We have large wooden Braille blocks to help teach Gabe the alphabet, and he can already identify several letters.  It is pretty amazing.
     Gabriel has become so well-adjusted that we are able to do things as a family that we wouldn't have dared do 1-2 years ago.  We used to plan our days carefully, limiting our activities per day and avoiding certain situations all together.    Now we rarely worry about how Gabriel might react to a new place.  During Easter vacation we decided to go to Legoland along with our visiting Swedish family.  The nice thing about this place is that they have a waterpark within the main park, and all of the children, including Gabriel, really enjoyed this.  The water was very cold while we were there, but it didn't seem to bother Gabe.  He sat in the same place, splashing around, for a good twenty minutes before he allowed us to show him the rest of the fun to be had!  As I mentioned before, he experiences things fully, and at that moment he was experiencing cold water and did not want to be interrupted!  

                  As well as Gabriel is doing, there are naturally still hardships that we face with him.  But even as I write that, I see how a lot of our challenges are no longer so daunting.  One of the hardest things that we have dealt with over the last couple of years is eye-pressing/poking, and I wanted to share this in case there are other families that deal with this issue.    
      This may sound funny or strange to someone who doesn't understand, but it is a serious matter.  Many children with LCA habitually poke or press their eyes, which over time often leads to sunken in eye orbitals and other damage.  The experts aren't certain why children with LCA press on their eyes, but there are some theories.  We have been told that the eye-pressing provides stimulation to the brain.  In other words, the brain might be craving that visual input in a sense.  
       It has been a strong impulse for Gabe, and trying to stop this behavior has been a battle.  Thankfully, we have been somewhat successful in diminishing the behavior, especially over the last year.  During the height of his eye-poking, Gabriel would press or poke his eyes hundreds of times per day, to the point that his eyes were so swollen that they wouldn't close properly.  I would hold his hands down, and he would try to get his fingers in his eyes using all of his strength.  It was scary.  I will admit that there have been times that I have broken down in tears several times a day because of it.  When your child has an impulse like this, your life revolves around it.  I could never leave Gabe out of my sight, because inevitably a finger would be stuck in his eye.  I would drive my car with one hand and have the other hand holding Gabe's hands down.  It was constant stress ....I can still feel that stress when I think about it.  But it feels good being able to describe all of this in the past sense.  We haven't dealt with the extreme eye-poking in over a year now.  It is something that we stubbornly fought.  Yes, Gabriel still pokes his eyes, but it is usually when he is very tired or isn't feeling well.  There are actually days when he doesn't do it at all anymore.  And if he does poke his eyes, all we have to do is tell him to stop, and he usually  listens.       
              Before having Gabriel, I thought I was a patient person, but it is after having him that I truly learned the meaning of patience.  We have to trust that Gabriel will learn the things he needs to learn in his own time and manner, even if his therapists say that he is behind.  When dealing with negative behaviors such as the eye-poking, Bert and I have had to patiently teach Gabe to deny that impulse.  And when certain days seem impossible, I know that it is temporary, and that with a little patience and hard work, it will get better.   I have also learned to stop and smell the roses....or  to stop and roll around in the grass, and this is a gift that my son has given me. 






04/22/2013 7:25pm

We shall never forget the laughter Gabe provides when he "sings" and moves to his little songs! That sweet little voice piping up, using musical memory for rhythm, is priceless! Gabe is a precious gift to our family, and our world would certainly have been lacking had we never had the chance to greet him and claim him as "ours"! Love you all!

04/23/2013 12:33pm

He is our little Gabe :)....love you too!


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