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    Posted July 9, 2014 by
    cambryn1
    Location
    Sherwood, Oregon
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Dayblind from the sun...colorblind..degenerative disease..and aspergers and tons of fun

     
    My 3rd son is a special child with all sorts of unique special needs. During his IEP's no one can entirely put a finger on exactly why he is the way he is -- because he has a few different special needs. Being his advocate and educating teachers, doctors, even specialists brings me great joy. First, it wasn't until he was 3yrs old that we discovered he is actually day blind (achromatopsia) - requires him to wear red glasses $700 ea! - which means he's also almost colorblind, stickler syndrome (lack of proper collagen formation on his body; degenerative - which means his heath regresses at a youthful age; retina could detach before he's 10 or 20yrs old; legally blind w/o glasses - low vision w/glasses; joint issues/low muscle tone as well as fatigue easily. Lastly, he has mild Aspergers combined with SPD (Sensory).

    Within not even a year he was diagnosed with all this. My (ex) husband told me "he couldn't handle it" and left me to raise all 4 kids myself. After that, I ended up returning back to college in order to get back on my feet with a career to support us all after taking some time off to raise him (mothers intuition that he needed that basis to life). I attended almost 2yrs of college in 1yr and seeked employment after that 1yr in order to support my 4 boys myself. After seeking employment, I was actually offered a remote position with my previous boss which has offered me flexibility in order to better provide for Colin's needs as well as my entire new family situation.

    The feelings leading up to this point?
    Intense stress (made me unhealthy - my hair would fall out, heart rate was super high, blood pressure was up), depression, intense fear, fear of the unknown (will his retina detach before he's 10? He's turning 6yrs old this year!), how am I going to pay for 3 sets of eye glasses at $700 ea?! In order for him to see in the sun or any bright lighting situations? But also, with aspergers how is this all going to come into play as he grows up? Questions, that were always deep into the future. Research calmed me down, in order to "know" for better educating others, but also fatigued me immensely. When he was born, I had no idea, he was "healthy" just as every parent would of dreamed. Lastly, driving down a beautiful colorful fall scenic drive -- telling him to look out and see all the colors -- and suddenly being struck with "oh wait, he can't see that in color...what does that look like in B&W?"

    Milestones.
    Holding something to color during kindergarten and finally drawing his first picture, letters, and more. He didn't even use eating utensils leading up to that, as the fine motor was too much for him. Learning comes fairly easy for him because of Aspergers which makes him like a sponge for information, songs, tunes, facts, and more. First day of kindergarten, he came home reciting the entire book with perfect sing-song tune the teacher taught him that same day. Mostly, finding out that there's a new cure on the rise for Achromatopsia, that I've been trying to get him into trials now (very beginning phase!)..at least one thing can be *cured* Because of Aspergers, Colin doesn't have that fear/anxiety that can happen to little kids with Achromatopsia, which I think is a huge blessing to him right now. Because of that, I believe he runs into life head on having fun and smiling along the way despite everything. Also, it might help him tune out the mean comments he might get growing up from other school kids.

    Mostly, I want to be a "leader" for other parents. That they shouldn't let their kids having special needs hold them back, but use it as an opportunity to get back on their feet as well and rise above. Let the weaknesses become their strengths. It's not easy, but it's our normal. What other people don't understand about how your child and lifestyle is...doesn't matter as long as it is best for their family/child. They're special, their family is special..and that can actually be a blessing to them all not a curse. Also, I want to encourage health care, professionals, doctors, companies and more...know that these families and parents aren't weak or titles. They're human, and it takes a village to raise a child(s) so their involvement to help out, give back, and assist with special needs families plays a vital role into improving families and communities everywhere.

    This has also given me the inspiration to defy odds, and try to create more for my family. I went from utterly depressed and frustrated from being left to raise the kids on my own, to each day working through fatigue, anxiety, and fears into the beginning of our new future life journey together -- now we are back on our feet and the days are far brighter. I couldn't of done it with out friends, family, and coworkers rooting me on and believing in me. It's still going to be hard, time consuming, and expensive but my kids are worth it.

    Attached are images of Colins very first drawing ever (in kindergarten at 5yrs old!), with his brothers on 4th of july, with myself, and another one of him wearing his red glasses at the park (right now I'm working on getting enough to buy 3 pairs of red glasses since insurance won't cover that..they wouldn't even cover screening to see if he had aspergers so I had to pay out of pocket to find that out myself), a B&W picture I created to show that he follows our shadows in order to "see" around outside right now, and a few more.

    I want more for Colins life, and somebodies got to do that - and that some body is me as his mother.

    You can also search a youtube video I uploaded from a public speech I did during my public speaking classes (first one, lol, so lots of ums in there.), search for a chromatopsia or by my name Cambryn Courson.

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