Run Luau Run

I was going to entitle this post “She believes her farts smell like roses”, but I didn’t really think that would be appropriate.  That being said, there are people out there, in the real world and in the blogosphere, that truly believe that, in a metaphorical sense of course…or at least they are trying to convince you that it’s true – that anything she writes or says is the one and only way to parent an autistic child.  I read a post recently that shouted, “You’re kid has just been diagnosed with Asperger’s  – Congratulations!!!”  It was part of a running theme about how wonderful it is when your child has autism, that an autism diagnosis is all Sunshine and Unicorns and Rainbows, and how we just need to focus on the positives of autism and how if there is stress in your life because of the effects of autism, it’s never due to the autism, instead it’s the parents’ fault for feeling stressed and not loving their child enough.  In a nutshell that there is nothing difficult about autism in and of itself; that any difficulty is because as parents, we don’t love our kids; that if we get angry at autism, that is wrong and we are not accepting our child, that we are rejecting our child; that if we blame autism for some difficult moments, we are failing our child…

…that autism can only be seen as Sunshine and Unicorns and Rainbows.

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I’m a sunshiny guy.  I love rainbows.  I believe that somewhere in the multiverse, a la Max Tegmark,  unicorns actually exist and dispense “magic” from their horns.  I believe that our attitudes can shape our reality.  I believe in the power of positive thinking.  I believe in the incredible magic of a welcoming smile and an outstretched hand.  I’ve been accused of being Mickey Mouse-ish, Peter Pan-ish, PollyAnna-ish – and I plead guilty, guilty and guilty, with pride.

But here’s the thing: it’s not always Sunshine and Unicorns and Rainbows.  Yes, there are positive aspects to being autistic, no doubt, but there are negative ones as well – just like any other human condition (and I mean that in the are you human? then you have a human condition! way)

My Brooke has autism and along with the autism comes anxiety, sensory issues, scripting, rigidity, social difficulty, teasing by peers, dismissal from adults.  Her days can be and often are hard.  She picks at her skin, she makes unsuccessful play bids, gets overwhelmed by words on a page.  She panics when a baby or toddler cries, she avoids our kitchen whenever someone is cooking…the list goes on and on and on….

…but also with the autism comes a steel trap memory and perfect pitch – she can sing a song back to you after hearing it just once; rule based thinking is allowing her to learn and extrapolate the grammar rules of Spanish just from watching Dora the Explorer; a different perspective allows her to solve certain problems more easily that her NT-peers; what she sees often cuts through the bullshit image we put out there for the world to see, allowing her to see who we really are at our core…again, the list goes on and on and on…

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I had a friend years back who always insisted that everything was fantastic; everything was great!!!  Even when the shit was hitting the fan big time, she would insist that there were no problems, no issues…in the words of Han Solo:

…everything’s under control…situation normal…everything’s perfectly all right now. We’re fine. We’re all fine here now, thank you. How are you?

This despite meltdowns happening all around her.  I finally stopped asking.

***

Raising kids is not easy.  There are highs and lows, strung together with everything in between.  Being the parent of an autistic child, of any special needs child for that matter, I believe stretches that range.  I tell people that Brooke has made me a better father, husband and friend; that the lows are just that much lower, but the highs can also be that much higher.  Along the way, I think I’ve learned to appreciate the little things that so many of our fellow parents of NT children forget to pay attention to.  Brooke has shown me the way.  She stops, she notices.  While others are whizzing through the world, she is taking in its incredible beauty.

But to claim that there is nothing negative about being autistic or being the parent of an autistic child is, in my opinion, naive at best and extremely harmful and dangerous at worst. The authoritative claim that family stress only comes from the parent and not from what autism can do in terms of anxiety to a child? Misguided at best, hurtful and quite possibly negligent at worst.  What happens to the child whose parents start to blame themselves for everything and decide they simply can’t take it anymore and either walk out, check out or in a truly desperate act, take their own life? – all because when they found out about their child’s diagnosis, they were told that all they had to do was remain calm and that any stress their child was feeling was a direct result of the parents’ behavior – that any problems their child was having was because of them and their inability to accept their child.  I’m not a lawyer, but that sounds like dangerously negligent advice to me, especially when dispensed as if it were the one and only truth, not just the truth for one advice-giver.

There is no one truth when it comes to parenting…any kind of parenting.

We are all on our own path – what works for my family may or may not work for your family.  In fact, what often works for me doesn’t work for Jess and vice versa.  Each person with autism is a unique individual that in some areas has more in common with other autistics than those who are not, but in some cases have such differences that as a layman you would swear there is no way they would have the same diagnosis.  If every autistic person fit into the same description and needed the same kind of response from parents and care-givers, there would be no need for an IEP would there?

Listen, if you are living by the “Everything is Sunshine and Unicorns and Rainbows” philosophy and it’s working, well then more power to you and I wish you well.  Amen! That is fantastic, but understand that you’ve essentially proven only one thing: that Sunshine and Unicorns and Rainbows work for you and your family. Different strokes for different folks…but I would urge you to really take a look in the mirror and see if there is something, anything, that you are refusing to see.  A life that only sees the positive is a life with blinders on, in my opinion, and in the end it cheapens the wonder of the highs.

But if you ARE struggling with your child’s autism diagnosis; if you ARE asking WHY and HOW; if you DO get angry and sad, sometimes at the same time; if you do FEEL stressed please, please, PLEASE don’t read these posts by the Sunshine and Unicorns and Rainbows crowd and then think of yourself as a failure, as a non-loving mom or dad – don’t believe for a second that the pain you or your child feels is your fault, is anybody’s fault.

It. Is. NOT!!!

I am not saying that you shouldn’t read the stuff by the Sunshine and Unicorns and Rainbow crowd, I’m just saying you should accept their philosophy as something that seems to work for them.  If you think it might work for you, well, go right ahead!  But if you try it and it doesn’t work, DON’T BLAME YOURSELF!!!  It reminds me of the churches that say if you can’t pray away whatever troubles you have in life, then you don’t have enough faith.  Sometimes faith alone isn’t enough, because that which troubles you doesn’t go to church.  Sunshine and Unicorns and Rainbows are not the end all be all authority on parenting autism and if it doesn’t work for you, despite what they may lecture at you with unyielding assuredness, that’s okay.

Struggling, asking why and how, getting angry and sad, feeling stressed are all normal reactions to life in general.  Every parent goes through those feelings, even parents of NT children.  If you’re having a hard time, remember that you are NOT alone; that there are places you can go to vent, talk and find support; remember that all parents struggle; we, as special needs parents, may struggle a little more; we may worry just a little bit more.  I would think that not worrying about the future, whether it’s tomorrow or when our kids turn 22, is a sign of denial.

Struggling, questioning, feeling overwhelmed and stressed are natural – it all comes with parenting, whether your child is autistic or not; and in my conversations with NT parents, their struggles are just as big to THEM as ours are to US.  Those thoughts and feelings are what instigate change and progress and hopefully move the conversation forward.

Did your child just receive an autism diagnosis?  This is what I will tell you – it’s going to be okay.  The diagnosis doesn’t change your child.  He or she is still the wonderful, beautiful being you have loved since birth.  His or her diagnosis will open doors, it will give you a starting point, it will give you tools, it will let you know where certain behaviors are coming from and will hopefully allow you to communicate better with your child.  The road will be bumpy; there will be lows, there will be stress, there will be anger and sadness…

…but just remember there will also still be sunshine, there will still unicorns and there will definitely still be rainbows – and those moments will shine brighter than any sun, be more magical than any unicorn and be more colorful than any rainbow.

We are all on different paths, but we are all, ALL, in this together.