Monday, July 2, 2012

Honorary Degree

I have started to look into returning to work.  Our bank account desperately needs it to happen!  One thing that has struck me as I have started to look is that I have learned soooo much over the past 4 years, but there is no way to tap into that 'professionally'.

I mean, I am a certified elementary teacher with some added special education endorsement.  So, you would think that I could just step right back into the teaching world and move on.  Instead, I find myself way more interested in early intervention, sensory issues with kids, autism ....  Even wanting to support families that need to find resources and navigate the medical/insurance/therapy/nutrition world.

I quickly realized though, that while I was caring for Ayden Jane and doing what I could, things sort of went on without me.  Not majorly, just in little ways.  Staff changed to new people, processes changed, technology, requirements...

It all has left me feeling a bit like I have learned ridiculous amounts during all this time, but have no way to use it.  I mean, parent of a special needs child with a rare genetic disorder might attract some attention on your resume, but not likely the sort you want!  It was the 'choice' of our family for me to just dive in and do for Ayden Jane.  Gary took over working all he could to pay the bills.  Other families do not have that choice and I know it is a blessing.

I just feel like those of us that have survived this world and even thrived in it should get some sort of honorary degree or something.  Not sure what it would be called, but along the way the courses have included introductions to genetics, nutrition, PT, OT, ST, sensory processing disorders, autism, navigating insurance, acquiring services, developing a medical team, endocrinology, IEP's, maintaining a marriage through stress, raising siblings of a special needs child, and oh so many other things.

So, to all of us who are working on our honorary degree great job!


  1. I was JUST thinking about this in the shower this morning!!! I was thinking about my "credentials" and how it's too bad I can't put those towards a "real" job. Too bad! Trying to figure out the work situation myself over here....

  2. I was also thinking about that, even if my story is a bit different.

    What I learnt though is that "being a parent of a child with a rare genetic disorder" does not explain your competences in the world. It explains your competences to other parents of children with special needs, but basta.
    For the rest of the world, and even for many doctors, it is like if you were saying : "I wear a purple dress to go shopping". It does not explain to people what is the point of wearing a purple dress for shopping.
    For "being a parent of a child with a rare genetic disease", it is the same : it does not explain what are your competences and of what benefit they can have by hiring you.
    Focus on your competences, how did you learn these skills (even if it is by taking care of your child) : explain your competences, explain, explain.
    Because they are not obvious for "the world".

    I am in the same situation with my own disability. I had to stop my studies to treat myself.
    But in the mean time, I have fighted to make a law change (nearly the end of my fight, thanks God).
    For "the world", "make a law change" does not explain what are my skills. The thing is that you learn plenty of skills : negotiating, medical and legal knowledge, how to find a piece of info and on the side, how to maintain a computer (a computer is a must, a working computer an absolute must).
    But I have to explain them : the implied competences of "making a law change" are obvious for me, but they are absolutely not obvious for "the world".

    So if I had to summarize my idea in only one sentence, it would be : "make your acquired skills obvious for the world".