Thursday, 6 August 2015

To Those Who Have Said....

As autism parents, we all experience an incredible amount of judgment, advice, “words of wisdom” and whether intentional or not, belittling.  Sometimes it is truly a result of someone trying to make us feel better, the whole “it’s not that bad” idea.  But the bottom line is that when your children are young and newly diagnosed with autism, well, it IS that bad.  It’s awful.  I am sharing this not to make anyone feel badly who may have said these things, but to help open people’s eyes to the truth.  Autism is not a blessing in our house, it’s not.  And frankly, autism is one of the most belittled, minimized, diagnoses out there right now, between the kids who reportedly “recover”, to the kids who thrive, to the idea that it’s overdiagnosed and not that big of a deal.  Then to the, “why are you treating them, accept them as they are?” or “what else are you doing for them?”, or “why seek medical treatment when it’s a not a medical disorder?” (YES IT IS!!!!).  Everyone wants to fight over what causes autism, and talk down when they don’t agree with another’s opinion.  Everyone wants to debate what to do for children who have autism.  Nothing we do as autism parents is respected in the way that it should be.  Everything is minimized, until another child drowns, or a high schooler goes on a shooting rampage and all of the sudden people are talking about him/her being on the spectrum.  It’s a mighty fine ball of wax to be handed as young parents- because there is no way to “do” this.  There is only feeling your way and praying and finding amazing people who have been there and want to help.  It’s a big cluster fuck if I’m being honest, which apparently today I am. 
So without further ado, to those who have said:

“Of course Nathan is going to talk, he’s just a little late- I have zero doubts and you need to stop stressing so much about it”
Wrong- here we are today, at almost 6 years old.  I was right to stress because so much blood, sweat and tears have gone into getting my sweet boy to say MAMA to me, purposefully that you can’t even fathom it.  You have no idea what that feels like, to put your heart and soul into one little being every single day for 6 years and finally, finally hear him say mama (again in our case, as he said it before he regressed and then lost it).  Any parent, if their child is not developing normally, is going to stress- and they are right to!  You do not have the answers- no one does- that’s the scariest part of all. 

“Get him into early intervention, you won’t even recognize him by next year”  (said by a teacher, well meaning)
I did it- 4.5 years ago.  I recognize Nathan quite well.  He is progressing now.  But for close to 2 years, I can truthfully say that he did not.  Everyone knows a kid who had intervention and made incredible strides- it’s so awesome.  But it is not the norm.  Not every child does this.  Mine did not.  And for those two years, I was so angry at that early intervention teacher, because she said it!  I waited for it!  It didn’t happen!  And God knows I wanted it to.  I took him everywhere I could, took communication classes, took him to studies at Hopkins and NIH.  And he didn’t progress- until he did.  And no one can predict when and if that is going to happen. 

“my kid is obsessed with things too”
WRONG WRONG WRONG!!!!!! If I showed you an age progression of photos of Jack, you would see him with airplanes in his hands from age 2 until now, which is age 8.  You cannot have a conversation with my son without him bringing up his obsession at least 3 or 4 times- on a good day.  His obsessions keep him from being able to focus on anything, and I mean anything else.  He struggles in school, he struggles to eat, he struggles in therapy, he struggles to do really any tasks because his little brain cannot move past airplanes, or bulls, or whales, or crabs….it is REAL, and while your child may go through a week, or even a month of this from time to time, we are not residing on the same planet on this topic.  Not even close.

“He seems fine, and god is he cute!”
Now see, I can understand what you are trying to do here, I really can.  And I more than anyone know just how cute my kids are.  (they ARE!).  But it actually makes me feel like crap when you say he seems fine (either boy).  They are not fine, not even close.  They may be doing well today.  That being said, while you may even mean, right at this moment, the statement conveys that there is nothing going on here- and it minimizes our daily struggles. 

“My kids hate changes in their routines too!”
All children thrive on routine, I am not disputing that.  But can you go down a grocery store aisle for a second time without a full on meltdown?  I can’t.  Can you take a different route home if there is traffic?  I can’t.  Can you walk around your neighborhood a different way?  I can’t.  Can you leave the radio playing as you pull into the driveway?  I can’t!  When a therapy provider calls and says they can’t make it, or that they will be late, or that they need to change days, do you worry about how you will accommodate that change with work, or do you worry about the fact that it will likely throw your son into a tailspin?  I am B (well and A) That’s what I mean by rigid.  That. 

He’ll grow out of it (in regards to Jack)
I just can’t even.  Yes, he has learned some new strategies to help him function a little better in life.  Has he grown out of his issues?  NO.  Some of his issues have lessened, he is more capable of dealing with unusual sounds and things like that, but these issues are replaced with others, such as new behaviors and even aggression most recently.  This is not thumb sucking people, or a blankie.  This is a lifelong challenge

“You need to be stronger”
This one really sticks in my craw.  It was said to me quite a while ago, by someone who barely knows me, and knew very little of our family situation.  Oh, and they were also intoxicated lol.  It didn’t make it sting any less.  No one knows what all goes on behind closed doors, not even the people who think they know.  During the time in our lives when this was said, I can now confidently say that I was stronger than I ever could imagine being and moving heaven and earth for my family even with lots of resistance from other members of the family.  I handled the situation, quite frankly, beautifully.  Not that I did a beautiful job all the time, but trust me, if you knew the reality of everything I was facing, you would never, never say that to me again.  EVER.  I have bad days, weeks, even months.  But I put my head on my pillow every night and fall right to sleep because every single day I know I have done everything I can for my babies.   You try it—you try this life--- and then we’ll talk


  1. We have been doing ABA for 8 years and have gone through many therapists and consultants. We are not in the US/Canada, but our consultants were all trained in the US. We had to train the therapists ourselves.

    If you can find an ABA consultant who has been treating children for 20 years they will be able to help you with most of the problems you highlighted in both your boys. Compulsions, radio on/off, obsessions etc and all the issues that lie ahead, like puberty, bullying etc. You can make adjustments to how you live that will pay off big time, otherwise you may end up like lots of parents who get trapped by the obsessions/behaviors of their adult-sized kids. It is much easier to sort these things out when they are small.

    One of our consultants was from the New England Center for Children and other was trained in Philadelphia and did her Phd at Temple University. I am sure you can find such a person for advice.

    They can give really practical advice that later will appear as common sense. They would tell you to vary your routes in the car, regardless of any tantrums. They would tell you to control the radio as you want. Otherwise when they are 18 years old, and much bigger/stronger than you, what will happen? Mom has to be the boss, once they learn that they will never forget it, regardless of obsessions and compulsions.

    You just need someone with decades of experience to follow you around for a couple of days to see how you can change/improve things. A kid fresh out of ABA school does not know these things.

    It is not easy, but it is much easier if you are in the US (the home of ABA).

    1. Thanks for the perspective- we are lucky over here- relatively speaking