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     Gabriel the three year old, Gabriel the school boy, and Gabriel the big brother.  These are just a few new things about Gabe these days!  Those of you who know us, know that the last several months have been trying.  We welcomed our third little son, Samuel, into our family, and although NOT blind, he was born with spina bifida.  As overwhelming as it has been, we, and in particular Gabriel, are doing fine.  Somehow in the midst of the chaos, Gabe has left behind babyhood and become a little boy!

      "Twinkle twinkle little circle.  Twinkle twinkle little square".  This is Gabe's own adaptation of "twinkle twinkle little star"!  Every time he sings it, going through every shape imaginable, it makes me smile, happy to hear him being creative, and sad as I realize what he is singing.  To Gabriel, a star is nothing more than a shape, and a twinkle is just a word in a song.  As he gets older, I will be able to explain to him that there are millions of stars in the night sky, but how I wish that I could just take him outside, point, and say "look"!  I often wonder how Gabe "sees" things.  For instance, what is an elephant ?  He has never touched one.  To him it is that roundish piece in the animal puzzle.  It is a small plastic figurine at the Ocupational therapy office, but a large plush toy at school.  It is the leathery feeling texture in our animal book at home, but it feels completely different than the one in the book at school.  An elephant is many things to Gabriel.  However, without having ever explored and interacted with one, Gabe's perception of a real elephant is probably not very accurate.  
    Since Gabe understands things differently from us, we wondered how he would react with having a new baby in the house. Thankfully, it is easier to explain what a baby is than a twinkling star or an elephant, and Gabriel adapted well when Samuel was born.

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     Gabriel experienced first hand how my belly grew, and noticed that it was gone when Sam was born!!!  We let him touch Sammy to show how small he was, and explained that babies wear diapers, nurse, cry, and sleep.  These are all things that Gabe has an understanding of, and that helped a lot in explaining what a baby is.  He has shown interest in Sammy, feeling his feet, hands, face, and patting him NOT so gently!!!  It is sweet to listen to him talk to the baby, but he doesn't quite understand why he doesn't get a reply.  What Gabe doesn't know is that Sammy is staring at him intently, or smiling when he talks to him.  There is a natural disconnect due to Gabriel's blindness.  It becomes obvious when I see how Ollie and Sam interact with each other.  Words aren't needed, as they look into each other's faces, smiling and giggling.  I hope that as Sam gets bigger he and Gabe will share a similar bond to what Ollie and Gabe have shared, and what Ollie and Sam already share.



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         Gabriel started school before Christmas, and was placed in a blended pre-k class at a mainstream school.  This means that half the children are typically developing, and the other half of the children have some sort of special need.  Gabe is the only blind student.  He is assigned a TVI (teacher for the visually impaired) who is with  him daily for 2 out of the 4 hours he is there.  It is her job to adapt activities, and teach him his pre-Braille skills.  I have been asked numerous times if Gabriel can read Braille books.  I don't think most sighted three year-olds read books yet, and  no, Gabriel cannot read yet either.  He is expected to learn his letters like any other child.  By the time he starts Kindergarten in two years, he should be able to identify the entire alphabet.  Gabe is also learning how to type on a Braille machine.  It looks like an old-fashioned type writer, and his favorite part is when it goes "ding"!  The TVI describes Gabriel's work on the Braille machine as scribbling.  Just as sighted children are encouraged to scribble with crayons, Gabe is encouraged to scribble on his Braille machine.  I was impressed to see that he can name all of the parts of the machine, and even load his own paper! 

      In addition to his TVI, Gabe also has an O&M (orientation and mobility) instructor.  He comes twice a week to Gabe's school to teach him how to properly use a cane, and to explore the school campus.  Gabriel loves his O&M sessions, and has made a lot of progress.  Gabriel's use of a cane is becoming more refined, and we take it with us whenever we are out.  Just last week I had a complete stranger ask me what the point was of giving such a small child a cane to use.  Afterall, he is obviously not using it 100% correctly, and he still holds my hand when we walk.  Wouldn't it be better to wait until he is older?  I believe that it is important to start early, especially if the child is wiling to learn, and Gabe is.  I don't force the cane on him, and if he says, "no cane", then we let him be.  It is like anything else, I suppose.  A child isn't born knowing how to properly throw a ball, or play a musical instrument.  You have to let them bang on a piano first before they start figuring out that you can actually play melodies on it.     



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     Gabe's TVI at school and the Lighthouse (services for the blind) have been instrumental in helping us teach him.  Teaching Gabe isn't difficult.  He loves to learn and catches on quickly.  He could probably teach me a thing or two, such as being able to identify cars by the sounds of their engines.  Gabriel loves listening to and riding in different vehicles!  If you want to get on Gabe's good side, just offer to drive him in your car!

       The difficult thing, as a parent, is knowing what to teach him.  We try to make things as hands-on as possible, otherwise he will have an incomplete perception of certain things.    Gabe sometimes  does laundry with me, and yes it takes twice as long!  I've let him wash plastic dishes so he knows what we are doing when we say that we are washing up in the kitchen.  Apparently, Gabe thought I was eating dental floss once, when in fact I was chewing gum, so I explained that several things can have a minty smell besides dental floss.  We try to see the world from Gabe's perspective, but I still have  "of course"  moments when watching the TVIs working with him.  Recently, at the Lighthouse, Gabe's teacher went through the steps of making orange juice with him.  She let him hold an orange, and he had no idea what it was.  I had only given him orange juice in a glass, and he had only ever eaten cut up orange pieces.  His teacher first let him feel the orange.  Then they peeled it together and ate the pieces.  Then they took another orange, sliced it in half and made orange juice together.  Lastly, Gabe drank the juice that he made.  NOW he has a full and accurate understanding of what oranges and orange juice are.

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         When I compare Gabe to the rest of us, I sometimes think that he is the happiest person in the world.  Feeling the wind blow in his face gives him the same level of excitement as a sighted child receiving a new video game!  I wish that more people could look past Gabriel's blindness, and see him for who he is.  We are lucky in our community, that we have plenty of people who treat Gabe with love and understanding, but we have come across just as many that don't.  At the age of three, Gabe is not yet good at socializing with random people that he doesn't know well.  If he has met you one-on-one, and you have shared even one minute of fun together, he will forever remember you and associate you with whatever fun you shared.  There are, however, plenty of people, even friends of ours, who don't even acknowledge his presence or become silent when they are around him.    When things become silent, in a sense Gabe is doubly blinded.    

     We continue to be amazed by Gabriel, and I find myself trying to be a little more like him!  He still has a lot to learn and work on, but the way he views the world is beautiful.  Gabe's favorite "characters" aren't Mickey Mouse or Scooby Doo.  We, his family and friends, are his favorite characters. 



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A Small Update on Samuel

     Samuel is now four months old, and being that he is a baby, there isn't too much to report!  We are grateful that, despite his diagnosis, he is doing very well.  He is over 20 lbs. and is the size of a one year-old!

       Sam was born with an open myelomeningocele, spina bifida at L4 (the fourth lumbar vertebrate), which means that parts of his spinal cord were protruding through a hole in his back.  He had surgery to close the hole before he was even a day old, and came home one week later.  At 11 weeks Sam had another surgery.  This time he had a shunt placed in his head to drain fluid from his brain.  Thankfully, he overcame the surgery well.

     What remains to be seen, is what Samuel's mobility will be like, and if his bladder and bowels function properly.  We are in a "wait and see" period, as each case of spina bifida is unique.  It is hard to know which spinal nerves were damaged.  We, and Sammy's neurosurgeon, are optimistic that he will be able to walk.  His hips developed normally, and he has strong leg movements.  In fact, we have started putting him in a bouncer!  Unfortunately, Sammy does seem to have certain deficits in his feet.  They have limited sensation, and limited movement.  As he gets older, we will be doing physical therapy, and hopefully with the help of some foot braces, Sam will be walking around!

     Samuel has captured all of our hearts.  He is a sweetheart, who smiles and laughs a lot, and he sleeps through the night!!!!!   

    

      











Rickard Wahlberg
05/31/2014 3:21pm

I do like your blog Rebecca. You are Writing in a very sensible way. It's good for a grandfather to read. I wish you and your family the very best.
Farfar Rickard

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Rebecca
05/31/2014 4:36pm

Tack so mycket!! I am happy that you got to spend so much time with us during those early weeks! I will try to be better at keeping the blog up to date!

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mary haupt
06/01/2014 12:10pm

Your blog is wonderful and full of the info that those of us who live far away are glad to know..You and Bert and the boys are family and though the miles separate us our hearts are filled with love for each of you.I keep you in my daily prayers and know that God holds your family in His loving hands and that you draw joy and strength from His amazing love. I so look forward to meeting Bert and the boys when I retire and spend winter in your area. I hope you will keep your blog going.I know it takes a lot of time but it helps us long distance family to stay connected and we love to know how you are all doing. Love and prayers.

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06/04/2014 3:53pm

I was so glad to hear news of your children, who are in my prayers, and wish you would add a note about Ollie too. It sounds as of you are working very hard, and are a great mom to your children. I hope you are able to enjoy some fun times over the summer, as well as all the learning/working/therapy, etc. Blessings from Tricia

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