April is Autism Awareness Month, and when we first received her diagnosis, it knocked the wind of out me.
And my husband. While we knew she was struggling in certain areas, news like that doesn’t settle in easy or quickly.
This photo was taken a month before we knew. Could you tell? She is a bright, beautiful little girl, who is very high functioning, so outwardly you don’t know. How could you, unless you spent a significant amount of time with her? Once the diagnosis settled in, the work began…and through referrals, research, and countless interviews, we aligned ourselves and surrounded our girl with amazing therapists who went beyond, so far beyond with our girl. WE ALL GREW. And learned. And struggled together.
With a child like miss Mari, it doesn’t make sense for outsiders to see her fall apart in a restaurant…or have a hard time at a sports event, or movie theater, birthday party, trip to the park, or any “normal” type of activity for a then 4 and a half year old. That was a rough patch, receiving those looks like…[those parents have NO control, they don’t set boundaries, etc.]
Since Autism is different for every.single.person affected, it is difficult to understand how she processes differently and why she can appear to be slower, and how her bright little mind knows what she cannot articulate.
What we have learned in the past 3 years is how critical early intervention can be……………..
I want to share one of the examples her psychiatrist shared with us to describe how part of her mind works, and was so instrumental in helping us to understand how to help her.
You and I, who don’t live with Autism can jump from topic to topic in a conversation. Have multiple conversations at the same time even. We have clear “walls”…
A child like Mari has CEMENT walls. Once she goes down a path and is focused on that activity [because of her delays and sensory issues], for her to go to another topic means: She has to back down the corridor through the cement wall and come out of the tunnel before going down the next “tunnel” or topic. And then she said, now imagine if YOU knew that you had to do that, and that everyone around you didn’t have to do that. And your amazing little mind was leaps ahead of where you could take it. And YOU knew everyone else knew that about you, too.
I came across this story and as parents who only want the “best” for our children, adapt to a new brand of hope for our children living with Autism and hold one another tight every single step of the way!
Welcome to Holland
Written by Emily Perl Kingsley (in 1987)
I am often asked to describe the experience of raising a child with disability – to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this…
When you’re going to have a baby, it is like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy! ‘.
But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It’s slower paced than Italy. It’s less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, ‘Yes, that is where I was supposed to go, That’s where I had planned’.
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
We love you, miss Mari more than you will ever know, and simply could not be prouder of how hard you work and how very far you have come!
Thanks for reading and allowing me to share!