Blog post from another parent addressing "Expectations"

There are no words to express the emotions this post brought out in me...WOW is about all I can say as I really feel this mother took our life and just wrote it out on paper without even knowing me! Through this turn of events in our life, we have definitely learned to not take one word, one skill, eye contact, etc for granted. Like the writer said, multiple expectations are placed on a child as soon as they are born not only by parents, but other family, strangers, etc...and then when your child does not meet these expectations and are "left behind" by other children their age, it hurts so much knowing there is no specific path to follow to "catch" them up. No doctor can tell us one certain therapy or one certain behavioral or sleep medication will work...so we just keep going and going and going...and we feed off of those extraordinary things he does that are unexpected like the child in this story yelling out "a cow." So many skills come easy to children and the parents just cross that off their mental list and move onto the next one. Meanwhile, here is Brycen fighting and trying so much harder just to cross that one thing off of the list...the one thing that another parent of a similar aged child has pretty much forgotten about because their child did it so easily, without help, and it was so long ago.
I hope you enjoy reading this post as much as I did...and hope it gives you one more glimpse into the lives of Autism!

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.
I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.
With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.
On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”
Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”
When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.
So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.