Thursday, May 30, 2013

My Future is Bright

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Last weekend Noah and his friend Jayden, hung out at the zoo together.   We first met Jayden when the boys were really little and they had therapy schedules at the same facility and time of day.  And over the years we keep crossing paths, which has always been nice and we finally coordinated a time to hang out together, just for fun.   Jayden has an awesome mom, and totally saved the day when we realized that there was miscommunication that left us without packing Noah lunch.  And without pureed meals we're pretty sunk.   Thankfully she had applesauce and saved the day.  As special needs parents, we have a tendency to pack for all kinds of situations, and it often takes us hours to plan exactly what we need.   We are generally prepared for all types of sudden weather changes, extra clothes, diapers, supplies, sunblock, food, drinks, cool packs and sprays, and in my case a service dog and all his gear in tow.    So we were extra thankful that Jayden's mom came with extra food to compensate for each my husband and I thinking the other one packed Noah's food.
Jayden & Noah

It was a really great relaxing day, the boys share the same love of the train at the zoo.  It was a lot of fun, and we can't wait to do more things with Jayden and his mom this summer.  The boys have a great time together.  Samson did really well too.  It was his first time to the zoo, and he did great.  There are of course certain areas of the zoo he is off limits in because he can disturb some of the animals there, but that was okay, we didn't mind skipping those at all.  We filmed his lesson four, and hope to hear that he passed soon so we can move onto lesson five. 
Samson & Noah

Lots of new things have been developing for Noah.  Which of course is taking a lot of time on my part to coordinate.  But it comes with the job of advocating for a child with special needs.  We are exploring custom seating evaluations and a power wheelchair for Noah.  Yes I typed that right - a power wheelchair for all those medical professionals who say it's not possible... Noah's going to just blow your minds and show you what he can do.  Nothing I hate more is when someone doesn't believe in Noah.  I don't believe in doctor's discouragements - but that would need it's own separate blog post.  I believe in Noah.  I see his spirit and what he's capable of... and I won't ever give up on him.  He can do this. 

We've also been trialing communication devices for Noah for a few months.  We've tried both the Dynavox and Tobii.  We were tremendously impressed with the Tobii system.  It has some incredible features and Noah is able to navigate it well, and is making choices.  I love that we only have to calibrate Noah's eyes once and the system will remember him each time, unlike the Dynavox where you have to calibrate it every time you use it.  It will also have the ability to transition to a proximity switch as we think Noah will likely have the potential to use his hands and arms with more accuracy with time.  I also love that they have something called a PCEYE which is a eye gaze device that hooks to any computer by way of USB port and any child can activate a computer using their eyes.  The technology is breathtaking.  And I'm thrilled that Noah's therapy school is considering obtaining one for children like Noah.  The new model that just came out is dreamy and I'm so excited.  It has a big sticker shock price tag of nearly $20,000, and now we await Medicaid approval.   But I love that Tobii has it's own attorneys on staff ready and waiting to fight if there is a denial... now that's a company I love.  One that will fight alongside you.   I have enjoyed their customer service representative that we have been working with, she is very knowledgeable and will train us for four hours when the device arrives.   It even has the capabilities of allowing Noah to change channels on our television, turn it on and off and even be mounted so that his eyes can be detected in the dark when he's sleeping and he can alert us if he needs us in the night.  Pretty awesome stuff. 

And we decided to do summer school with Noah one day a week this summer.  We weren't sure how it would go as in the past other children tended to overwhelm Noah and his attention and patience span isn't very long.  We made it a whole hour and fifteen minutes, and I love his classmates and teachers.  We are really blessed that Noah was granted a scholarship to be able to attend his therapy school, which integrates an equal amount of typical children and children with special needs.  So these children already have a great understanding of children with differences, so they don't see Noah as handicapped.   They are interested in him, they touch him, bring him toys, talk to him like he is just like them.  They have some questions about him and are naturally curious but seem to have this unconditional love and understanding that many adults never develop.  I will have to go with Noah each week, as he's too involved for anyone else to care for him. Which is okay, as I know Noah's limitations well, even this last week I knew during recess that Noah was done and had to go home before his meltdowns started.  Next week I hope that we'll be able to stay long enough to have lunch with his classmates... that's our goal.   I just love how it feels so comfortable there, everyone genuinely cares about Noah and including us. 

Keep standing, keep believing and keep hoping because God has a bright future in store for you!


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.