Some people know a lot about autism, others, nothing at all. Some think that you can cure autism or autism is a mental illness. Not at all. Wrong in both cases. Some people with autism can be high functioning. Some of them think, that their self-advocacy is taking into account each person with ASD, but that’s not a case.

I’ve seen so many arguments about who is wrong and who is right in this field. As parent, I got my own opinion.

 

Having autism doesn’t make you a specialist in this field, as being a father not making you a good role model. Raising awareness about autism in any form is crucial and very important. Although we cannot forget about families who experience autism with additional support needs.

 
I am the father of a child with developmental delay and autism. I used to work with low functioning children, on the spectrum, with very complex needs. And I can tell you that only few self-advocacy people talk about this level of everyday struggle. I loved my job, I love these kids to bits and I can relate. Some time ago I wrote a post about grief in autism. So many people with autism wrote – “I have autism, I am alive and I’m doing well. It’s no need to grieve after me, this is wrong.”
"I have autism, I am alive and I'm doing well. It's no need to grieve after me, this is wrong."
But I will tell you right now. You’re wrong. Telling Us- parents of children with autism and additional support needs, that we are not allowed to grieve, is not ok. We had to go through all spectrum of emotions in our grievance, it’s our right to feel this way, about our emotions. Have you ever heard a poem called “Welcome to Holland”?
Check it out below.

Welcome to Holland Emily Perl Kingsley. 
All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…..

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.You buy a bunch of guide books and make your wonderful plans.

The Coliseum. The Michelangelo David.

The gondolas in Venice.
You may learn some handy phrases in Italian.

It’s all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!

I’m supposed to be in Italy.
All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan.

They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say “Yes, that’s where I was supposed to go.
That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …
about Holland.

I grieved, mother of my son also. It’s normal, it’s healthy. Without it, without going through sadness, anger, disbelief, without feeling guilt, challenges of ASD and additional needs, we wouldn’t manage to accept it and deal with our fears about the future of our children. Who will answer our questions about those fears?

 
Will my child ever be independent? Will I cope with it? What will happen after my death? Who will look after my child after my passing? Will he\she speak, understand or be happy?
 
Those are many questions without answer and we need to go through it all to reach acceptance and move on. To be able to settle this and help ourselves. To conquer those fears and be able to support our child. As on the plane, you need to put your oxygen mask first, before you can help your child. Please give us a chance, gives our right to go through grief and don’t judge us. Please don’t question our need to do so, and don’t take this away from us. As otherwise, we will not become who we are. A better and stronger parents for our children. They deserve best parents ever, best chances in life and as much love as possible, but to do so, we need to get it right. 
 
Every single person on the spectrum, self-advocate and their experience is unique. Equally important for understanding of ASD. To know better what our children might go through. I believe in this motto – “If you know one person with autism, you know only one individual with autism, not the autism itself. Even with similar behaviours each of us is different and unique.
 
Share love and understanding, rise awareness.