Happy Holidays (or maybe not)

November 25th, 2013

In just a couple of days my family, many of my friends and I will begin celebrating the 8 nights of Channukah.  Now shopping for gifts for friends and family is something that I love doing and I am very good at!  I am one of those people who remembers if you mentioned at sometime that you love antique teapots, or if we had seen an item that you loved at sometime, etc.  I am very resourseful when it comes to where to buy one of a kind items and hard to find items.  And if all else fails, I will just make something.  There is no challenge I have not been able to tackle and conqueor, even the year my daughter announced that she loved octopuses with moustaches but she also wanted a new watch.  So after a lot of searching I found it!  An adorable watch complete with a cute cover with an octopus with a moustache!  VICTORY!  The year that she was into Freddy Krueger, I found a guy who had made a one of a kind bronze charm of his bladed glove.  It was awesome!

If I could start a business just doing this for a living for people I would.

But when it comes to Josh, I seem to have met my match, year after year.  First of all, everytime I walk into a toy store around the holidays, I am always overcome with a deep sadness.  For many parents of special needs children, the holidays can be a difficult time.  So many toys, so many DVDs, so many fun ideas so many childhood memories.  None of it that I can share with him.  Instead my mind is constantly thinking, how can I adapt this for him?  Can he play this with other kids?  He is so picky and no matter what he probably won't like anything I get him unless it is another ball (he has over 80), another talking pedometer or watch (he has about 5 of each) or another digital recorder (he has about 15).  Believe me, I have done my research, I have found items, I have great ideas but he won't like any of them!

The first few years of his life at Channukah, he didn't understand the holiday or presents so we concentrated on giving his things like clothes or stuffed animals.  At the age of 3, he told us that he didn't want any presents so we were happy to oblige.  At age 4, Josh again said that he didn't want anything so we breathed a sigh of relief and went on with the first night of Channukah.  When Hannah finished opening her first gift, Josh called out, "Where is my gift?"  Evan and I looked at each other in horror and after an ackward pause we said, "Oh it's upstairs, we will go get it."  Evan ran one way and I ran the other.  Within 10 minutes we were back in the kitchen, me holding a handmade knit scarf and hat that someone in the family had made and had given to Josh about a year ago but he had never used.  In Evan's hand was a wire hanger that he had bent and twisted to look like an insane sculputer with string tied to it and bells or something hanging on the end of the string.  I cocked my head slightly to the side like a dog that is highly confused by a new command or noise.  Evan beamed back proudly.  He was delighted with his creativeness.  And wouldnt you know it.... Josh loved his gift and hated the scarf and hat.

Last year we went all out and got him a small acoustic guitar and a small drum machine.  He cried and hated both gifts and hasn't touched either item all year long.  This year my father in law is giving Josh his old ipad since he just bought himself a new one.  His dad and I will buy him apps which I have spent many hours researching.  No expectations....  HAPPY HOLIDAYS TO YOU ALL!

Josh's Way of Trick or Treating! LOL!

Oct 31, 2013

Well trick or treat everyone!  Happy Halloween!  I must confess that I am not a huge fan of this so called holiday.  In fact this year I went as far as trying to bribe my kids out of it.  I said "Can't I just buy you guys a few bags of candy, we can rent a movie and call it a night?"

But alas, they turned down my offer and I once again found myself in one of those party stores, staring at the same costumes I have stared at for oh so many years, thinking "really is this all there is?!"

Now please be aware that the first year I took Josh trick or treating he dressed up as a ghost at 5 years old.  Oh how the people stared to see a little ghost at their door with a cane!  They would open their door with a bowl of candy in their hands and a huge smile on their face and then looking at him the smile would turn into a look of confusion.  They would look to me and I would just smile then they would look back at Josh and hold the bowl in front of him waiting for him to take a candy.  I would take Joshs hand and direct it to the bowl where he would then have to feel EVERYTHING inside the bowl before finally choosing his treat.  As the night wore on and Josh became more comfortable and familiar with the routine he began to get bolder and bolder.  He would say "Trick or Treat" then he would say "What is your name, I am Josh!"
Then came, "what kind of candy do you have?  I like chocolate.  Do you have any chocolate?"
And if they said "No" he would quickly respond "well can I come in and maybe we can find some in your kitchen or something else I might like."
Please understand this was said as a question but the little bugger was already making his way into their house as he was asking.
Of course I stopped him and at every house explained that we could not go in to the peoples houses, but he would say "Well why not?  Don't they like me?"!
Now there were those few who bought his little manipulation hook, line and sinker!  And sure enough, before I could drag him away the owner would say "Well I guess you can come in!"
"NOOOOOO!" my thoughts would scream inside my head!  But it was too late, he was in and stomping around their living rooms, asking if they had stairs he could climb, or a dog he could pet!"
It was a long night!
The next year he wanted to go as a dog.  Oh but not just ANY dog! NO!  Josh wanted to go trick or treating as a GUIDE DOG!  Yes, a guide dog!  A blind guide dog with a cane, no less!  OY VEY!
Again another long night of explanations and me apologizing for my very cute but very pretentious son who seemed to know no personal boundaries!
This year my 16 year old daughter was hellbent on being able to dress up one last time and go trick or treating even though none of her friends are going.  So she decided that she would take her brother trick or treating this year.  He had wanted to be a pirate or a dog, but after some gentle persuading by his big sister, Josh left the costume store with his Batman costume which nicely compliments her new Batgirl costume that she had been wanting.  I will go with them tonight as will daddy, but tonight we are going to be spectators to all of the maddness!
I will be driving them to a neighborhood away from our own, just to give the people that have already met him in previous years, a break.  Look out everyone, here he comes!

HOW DO YOU EXPLAIN WHAT "SEEING" IS?

October 8th, 2013

How do you explain what seeing is to a child who has never seen anything at all?  This has been my challenge and dilemma for the past 9 years and I am still no closer to having the answer.  Josh was born totally blind and wears 2 prosthetic eyes.  We found out at 6 weeks old that his optic nerves never developed so he has literally never seen shadow, light, NOTHING!

Josh has always known that he was blind and that most people can "see".  He didn't understand it but would simply say things like, "I can see!".  How do you argue with that?  So we didn't.  I mean, Josh does see, just not the same way most of us do.  When his sister Hannah would draw a picture, Josh would be the first one to put his face near it and say, "Wow Hannah that is great!"  When Josh was 5, he put his face up to mine one evening at the dinner table.  I said, "Um, Josh what are you doing?" to which he responded, "staring at you!" and he laughed.  I couldn't believe that he had just made a joke like that! Then one day when I said out loud, "I am so tired", Josh responded with, "Mommy, you don't look tired to me." Josh even has a favorite color (silver) and yes, he does dream.  As I have mentioned before there is the most special comment of all when he says, "Mommy you look so beautiful today!"

And so I try to explain the concepts and things that we take for granted.  Try explaining the clouds, the moon, stars, or planets to a child who has never seen the sky.  The other day we were watching TV and Josh asked me if Robin Meade was on (morning newscaster for CNN's sister network HLN)  I told him that she wasn't there today and that someone else was doing it today.  When he asked me who it was I told him her name and he said "How do you know?" to which I responded, "I can see her."  He then said, "No you can't!  The TV is not like a window that you can see through Mom!"

One of my favorites is when he will come into my room and say "Guess what I have in my hand?" and I will answer him, "It's a teddy bear".  He becomes stunned and says, "how do you do that?!"

But the very best is when he will put one of his big playground balls under his shirt or stuff his pockets with his toys on the way out of the door to go to school and I will say, "you can not bring those with you."  His response is always, "how did you know that was there?  I thought I could sneak it by you!"

The Endless Fight for My Son

 September 1^st, 2013

Two weeks ago, Josh started 3rd grade!  Although he is totally blind, he has attended our local public elementary school since kindergarten.  Every year in April, his "team" and I meet for his annual IEP (Individualized Education Plan).  His "team" consists of his Vision Specialist/Braille Teacher, his O&M (Orientation & Mobility Specialist), his OT (Occupational Therapist), his APE (Adaptive Physical Education) teacher, his regular classroom teacher for the year, the principal and his case manager from the district. The one person who is NOT invited to attend these meetings is Josh's one on one aide, who is with him everyday in class.  This makes absolutely NO sense to me at all!  Why wouldn't they want the input of the one person who works the closest with him on a daily basis? 

Anyways, these meeting are long and tedious but have generally gone smoothly.  I consider myself very lucky to have been blessed with teachers, specialists and principals of whom most are quite good at what they do and have grown to love and care about Josh.  Each specialist at the meeting goes over the prior years goals that they had set and whether or not each was met.  Then they go over their most recent assessment of where Josh's current status in that area, and then they go over the new goals they have set for him for the next 12 months.  

Well this year began with a bit of a bump in the road.  When I took Josh to his classroom a few days before school started to meet with his classroom teacher and O&M so that he could get a feel for the layout of the room, I was informed by the teacher that Josh would not be having Science or Social Studies this year!  "Why not?" I asked.  It was explained to me that the only time his braille teacher could meet with him for his daily lesson was that time of the day when the rest of the class would be doing those subjects. Both his teacher and I were outraged over this and she said that she had called for an immediate IEP meeting to discuss this issue! I went straight over to the principal’s office and asked her if that was legal and she said that it was because Science and Social Studies are not part of the Core Curriculum and therefore do not legally have to be taught.  They said that Josh would simply receive a "no grade" in those subjects on his report card.  

Now any of you reading this who know me, know that it is hard to get me angry.  I am the calmest, happiest, easy going person around, but don't mess with my child because I become a momma bear!

I went home and contacted a friend of ours who is a blind transcriber in another district.  I told him about the situation and asked him what to do.  He told me that yes it was in fact legal and that most parents of blind children just accepted it.  I told him that I would not and he asked me if all of Josh's text books were ready in braille in his classroom for the first day of school?  He said that if they were not, then the school had a big problem on their hands.  Well that was all that I needed to know!!!!  I contacted the classroom teacher and asked her and she said that yes his brailled text books were there and ready to go.....EXCEPT for his math book!!!!  

A week and a half later the team met for an emergency IEP.  They knew that I had no intention of laying down for this one, so the principal and the braille teacher had already come up with a plan which they then presented to me.  Josh's OT, O&M and Braille lessons would no longer interfere with his daily school work.  Most lessons would now be held after school in order for Josh to remain in the classroom.  Problem solved!  But I had a little surprise up my sleeve for them at the very end of the meeting.  I announced that I wanted all of them to be know that I was well aware of the laws being broken because a braille version of the math book was not supplied to him.  They told me that they had ordered it through the state of California but that the State didn't have it in braille!  I said that as long as Josh's work was always prepared for him in braille in time, I would not make a big stink about this issue.....but that because I owned a non profit that works to help the blind and visually impaired, I would need to take up this issue on a bigger level to raise awareness.  I felt the room get a bit tense and that information was added directly into my IEP paperwork.

And the fight continues, now I look out for retaliation!

"You look beautiful"

Nov 17th 2012

"You look beautiful"

Sometimes we are lucky enough to hear these words, and what a nice compliment.  But never have those words sounded so beautiful or meant so much as when I hear them from my blind son!  Since Josh, age 8, was born totally blind and wears 2 prosthetic eyes, he has never seen a thing.  Nothing! 

To him it is normal.  But to him, he can see.  His dad, sister and I don't correct him because we know that he does see, just not in the same way that we do.  His sister Hannah is an amazing artist and will draw a picture and then ask me to come look at it.  Josh will run over to her and say "Oh Hannah that is gorgeous!"  and he means it!  He can be very funny though too, like when he puts his face up to your and you ask him "Josh, what are you doing?" and he says, "staring at you!"

But imagine a world where people would never judge someone for the color of their skin, their weight, clothes, etc.  Envision a world where people are judged off how they make you feel, their energy, their aura some call it.  That is what Josh's world is like. 

I hate it when people meet him, or I tell them about him and they get that sad look on their face.  "No,"  I say, "it isn't sad!  Spend one day with my son and you will know that you are the one who is disabled!"