Wednesday, July 29, 2015

Our Sharing is Not Shaming

I finally read the blog post that is calling out parents of children with disabilities for shaming their children by oversharing their experiences, their photos and the details of their days.

First of all, I will say I understand the point of view from which the author is coming.  I think there is a line that should not be crossed and I would hope each parent would take their child's dignity into consideration when they are trying to raise awareness and let the world know how certain disabilities impact individuals and families.  I would also encourage readers to read the post script, as I think it further explains the author's perspective and clarifies not all sharing by parents of children with disabilities is considered shaming or oversharing.

Ms. Findlay does mention one "shame" of which I have been guilty: "sharing stories of autism meltdowns."  This is something I do pretty regularly, as we experience them pretty regularly.  This is not something that I feel is wrong or demeaning to my child.  I share these stories so other caregivers of children and adults with autism do not feel alone.  I share these stories so that others on this journey who are further along than myself may offer advice to those of us who are still trying navigate how to best help our children when they are experiencing a meltdown.  I mostly share these stories so the world outside of our community will know how incredibly out of control and difficult autism can be for individuals on the spectrum and for those providing these individuals care.  Our friends, our families, our communities and our leaders need to know that many individuals with autism AND their families are struggling and not getting nearly the help they need to help those on the spectrum meet their potential.  Many families and individuals in our community are not getting the help they need to merely survive day to day.  Does this mean I am going to take a video of my child throwing a television across the room or attempting to beat the snot out of his siblings and post it all over Facebook.  No.  But I want you to know it's happening.  I want the medical community and legislative leaders to know that it's happening and, more importantly, that they need to give a shit.  Because there are days when we feel like we are drowning and gasping for air.  There are caregivers that are on the brink of their own mental breakdowns who are reaching out and not being heard.  And on those days sharing that pain and that exhaustion with others who have experienced the same may be all that keeps us going.

I try to focus on the positives.  I glow with pride at my son's reaching of milestones and growth and I share them to give hope and inspiration.  If and when he can read and comprehend my blog posts, he will know that we had hard days, but he will also know how far he's come.  And I won't hide that from him.  Ever.  I think autism acceptance that refuses to address the difficult aspects of our days and our fears for the future is not true acceptance at all.  I think that kind of acceptance indicates we are ashamed of those aspects of autism.  Wouldn't that be the opposite of acceptance?

As a parent of a child with a disability, as his experience is relevant too.  I hope my child grows into a refined, well-spoken self-advocate, like Ms. Findlay.  And maybe the disability blogosphere is too much of the parent's perspective without enough written by individuals with disabilities.  But the fact is that for many of us with children with cognitive delays and impairment, we, the parents, will always be our child's only voice.  Please don't attempt to silence that voice.

Tuesday, July 7, 2015

The Two Words You Can Say to Someone Facing a New Diagnosis

We have moved across the country again and have been at our new home for a couple of weeks.  I must admit, I feel like a veteran autism mom this time around.  Even though we are still early on in our journey, this move went much more smoothly.  Services for our son have already been established (services I have been working for months before the move).  I walked into his new district building with two former IEPs, his medical diagnosis, birth certificate, lease, medical records, and slew of other paperwork.  I filled out registration papers with three kids climbing all over me and trying to tear down the waiting room and I didn't bat an eye.  I've got this.

As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their children and I didn't know what to say.  I think I found myself tongue-tied because all I could think about was all of the things not to say.  All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife.  During my discussion with these moms all of those comments came rushing back into my head.  Some almost came out, because I just didn't have the right words in that moment.  Wow, this is what it feels like to be on the other end of this conversation.  Even without the right words early on I just couldn't bring myself to say the wrong ones.

I wouldn't say "I'm sorry."  I heard a lot of these.  And they were always empathetic and heartfelt.  But they made me feel worse, not better.  I didn't want people to be sorry for me.  While this life might be different, it is not less.  While my child might miss out on some things, he is not less.  His life and his diagnosis are not things I feel sorry for, you shouldn't either.

I couldn't say to these moms "He'll be fine."  I don't know if your child will be fine.  I don't know that early intervention will move mountains.  I don't know what the next twenty years looks like for you and your family.  And when people told me "You caught it early, he will be fine..." it hurt.  If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed?  Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine."  ASD is very complex and no two journeys are the same.  Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.

I knew better than to say "Really?  He seems so normal."  I was surprised by how much I heard this one.  It seemed like an attempt at a backhanded compliment.  But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.

I would never say "Oh, I hope not."  I only got a few of these doom and gloom responses.  They lacked empathy and pretty much damned us to a life of a misery in one simple phrase.  It is not a comfort and it is not helpful to try wish away a family member's diagnosis.  It's hurtful.

You see, all of those are overthinking and overanalyzing someone else's situation.  Those phrases do not comfort, they simply insert my opinion when my opinion was not asked.  Parents facing an ASD diagnosis do not want unsolicited advice or pity.  They do not want you to minimize their feelings or give false hope.  They want you to listen.  They want you to care.  They want you to stay in their lives and not brand them as special needs parents.  They want you to understand that although their lives might be taking a different turn, they still need friends.  Their children still need friends.

Then it came to me.  The two simple and perfect words you can say: "I'm here."  And mean it.  Mean it through every struggle, every victory and every passing year.  Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands.  Mean it when you are making out the list of which children to invite to your child's birthday party.

They don't need you to be an expert on autism.  They don't need you to always say the right thing.  Now, more than ever, they need you to just be there.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...