Finding My Meaning

I just read an article by Brian King:  http://spectrummentor.com/2011/04/28/meaning-life-autism/.  Read it for yourself right now.  If you have a child on the spectrum or a grandchild or the child of a friend, read it.  Brian is a GREAT writer, a great communicator who also happens to be on the spectrum and is the parent to three children who are also on the spectrum.  He knows whereof he speaks and he speaks well.

Now, I don’t necessarily AGREE with everything Brian has stated in this article but it certainly has challenged me to FIND MY MEANING in having a child with autism.  For years I can honestly say I was in the “fix it” mode.  We knew from day one (literally) that our daughter had profound sensory integration dysfunction.  (It’s hard to miss the signs when your newborn is constantly arching her back and raging upwards of four hours a night) So armed with our suspicions, we procured the best early intervention supports and services for her that we could.  We were blessed beyond reason in that endeavor and had absolutely the three best pediatric occupational therapists in the state working in our home with our baby and also with her older brother, who also has special needs.  I wasn’t prepared for the reality of not being able to fix her and I confess that’s led to no small amount of resentment on my part.  I’ve slipped into old patterns of thinking that I was somehow in control of my world and taken on the entitlements of,  “if I do this….then such and such will happen”……”if I work hard in my career, I will achieve a level of success”,…….if we provide this baby will all the right kinds of therapy then her brain will heal, it will form new neuropathways and we won’t always live in angst and turmoil”.  Well we’re eleven years into this and while we have countless beautiful memories for which I am VERY grateful, there’s also been no small amount of drama, that not even our closest friends and family can fathom.  Indeed, if our close family members had any idea what our day to day lives were like, they’d probably be shocked.

I’ve been out of the “fix-it” mode for awhile now but I can definitely recognize from reading that article that resignation has crept in, which has bred a spirit of futility.  I need to break that because it’s not helping me and more importantly, it’s certainly going to help my daughter develop and grow into the unique person that she was meant to be.

The part of the article where Brian has a “pretend” conversation with his view of his Higher Power is interesting too.  I definitely don’t subscribe to the finer points of his theology, but I can certainly appreciate his view that God created a variety of people to help us GROW.  There are so many ways having my daughter has helped me to grow.  Perhaps if I spent more time counting the ways in which she has helped me grow and less time naval gazing and feeling sorry for myself for all the difficulties, I would appreciate my time here on earth with her more.  She IS special and she IS very engaging and VERY sensitive.  She has a VERY tender heart and wants very much to hear the voice of God in her life.  That alone gives me more than enough for which to be thankful and in which to find powerful meaning for the rest of my days.

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