Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Tuesday, October 22, 2013

I'm Sorry - From One Special Needs Mom to Another |

I'm Sorry - From One Special Needs Mom to Another |

The thing about “I’m sorry” is that it’s something we’re constantly telling people we don’t want to hear.  We don’t want people to pity us as parents of children with special needs.  We don’t want people to be sorry that we have a child with special needs, or with challenges, or sorry for our daily struggles, or our challenge to survive the hour much less the day or a lifetime.  I’ve said that before myself… don’t pity me.  Don’t pity my child.  I wouldn’t change a thing (except maybe there would be a couple things).  But essentially, don’t be “sorry” for me / him / our family / our life.
With that, I’ve found that when I want to say, “I’m sorry”, it’s been hard to find words that say something else.  Because to me, when I say “I’m sorry”, it means…
That it totally sucks that you just found out your 9 year old has the mentality of an 18 month old; that’s a hard one for people to wrap their heads around from the outside, much less as a parent.  And it sucks that it also means that (realistically) while there will be so many beautiful things he will accomplish in life, so many changes he will make in the people around him that are heartwarming, touching, and yet to be known, there are still so many things he will not get to experience in life. I’m sorry means… I know you already knew it, but it sucks to have it thrown at you on a piece of paper, in black and white.
It means it sucks that on top of everything else, he has yet another ‘big deal’ diagnosis.  That what he already has should be ‘enough’, but along the way has come Sensory Processing Disorder and more.  And now, he has Autism too.  I’m sorry means it sucks that the biggest positive outcome of this diagnosis is that he can be eligible for more services.  Because it just sucks that he needs more services for another diagnosis… regardless of what it is.
It means I’m sorry… because I am overcome with the emotions that linger from every slam to my soul, for every time my own son received a new diagnosis.   Each delivery no less devastating than the one before.  
Many will differ with me.  Will say how horrible I am for not appreciating my son, or your son, for who they are separate from any diagnosis.  
My son is the most important person who has shaped my adult life, and I would have it no other way.  My son has taught me about love, resilience, strength and bottomless selflessness.  More than that, my son has taught me that it’s okay to be human.  To feel the pain that comes with knowing the struggles he will face in his lifetime.  That it’s okay to be paralyzed with fear for all the struggles I don’t yet know about, and that I can mourn those losses so long as I recognize the accomplishments when they come.  But my son has also taught me that it’s okay to say “I’m sorry” out of compassion and empathy for what another mother feels when she is told many of the same things that I have been told.
So, my friend, when I say I’m sorry, please know that I’m not sorry for your special needs life.  I’m not sorry that your son is who he is, because I love him too.  Just know that I’m sorry for all the pain that I know you feel right now, and for how it feels when you read that on a report, for when your mind jumps ahead to all the questions you won’t yet have answers for in the years ahead. I’m sorry for the mourning you will some day do in your own time, own space and own way.  
My friend, I say I’m sorry because it sucks to go through all this pain in order to find the beauty…but know there has to be beauty because he’s an awesome kid.  Maybe I’m sorry will mean something different when it comes from someone who doesn’t know you, your son, the special needs life… but I hope you know what it means from me, when I say…
Hugs_Emily Burnett_Flickr
I’m sorry.

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