Finding Our Place-- Successes and Setbacks in the School System. Chapter 12-- "Helping the Teachers Understand." My name is Greta. I'm from Iceland, but I live in Norway and have been living there now for 11 years. My daughter's name is Ainara. I think I first looked up the word "autism" online when she was three.

When she was born, everything was as it was supposed to be. I was not worried about anything. When she started kindergarten, life got a little harder. She didn't want to join and play with other kids or do the things that she was supposed to do. Trying to leave the house would lead to tantrums. She had problems learning to ride a bike.

There were many questions that I couldn't understand. I was always looking for answers. When she had great meltdowns, I had a terrible feeling that I couldn't help her. The answers I usually got were, she is not disciplined enough, we need to be tougher, we need to set boundaries. None of that worked, obviously. It was really hard.

I remember that it was a national holiday in Iceland and we were in this big gym with a lot of kids. Ainara didn't want to participate even though she knew some of them. She found these two hula hoops, went to one of the corners, and made her own game, doing it over and over again. It was this repetition which switched on something in my brain that said "autism."

I went home that night and googled. This was a long time ago, and what came up was mostly stereotypes-- mostly boys, specific interests, don't like to be touched, eye contact. Many of the stereotypical symptoms didn't fit my girl. She loves hugging. She has various interests and so on. The kindergarten didn't think she had it either, so we just moved on from it.

We moved to Norway when she was five. In Iceland, we can be quite harsh raising our kids, unfortunately. Norway seemed to give her a better experience in kindergarten. As she got more respect and less rigidity, she was allowed to be who she is. She's very imaginative and was able to engage in that type of play and bring her dolls and costumes to class, so she settled down a bit and there weren't as many meltdowns.

Things were better for her, and that was fantastic, but I still had all these questions lingering. We were still struggling. Why? Why is it difficult for her to ride a bike? Why is it difficult with all these types of food? I'm constantly reaching out my hand trying to understand what's going on. I really didn't believe we needed more boundaries and more toughness because it goes against everything that I felt.

We were just stuck. And then one day, my friend-- who has two autistic children-- lent me a book. It was a big book, and I found myself diving right into the spectrum. It wasn't just the front page on the internet with stereotypes because, as I learned, there's a big, big difference between boys and girls.

As a result, girls are getting diagnosed much later. It was in that book where I found all my answers. It was there that I found my Ainara. I was in shock. I cried a lot, then I wrote down all the characteristics and traits that matched Ainara. After that, the diagnosis process started.

For me, that process was painful, to be totally, brutally honest. I worked as a project manager. I resigned from my job and I hired myself as 100% her mother because I had such a strong urge to understand this. I couldn't focus. I needed to go all in. I found myself reading everything that I could and taking classes with the government and health departments here in Norway.

The messages I received were that it was going to be hard, emphasis on the gloomy statistics and things like that, so that didn't help very much. It wasn't until I ordered the book The Reason I Jump by Naoki Higashida and read the article "Don't Mourn for Us" by Jim Sinclair that I had this absolute revelation.

I had this grief and this sadness in me that had taken over. But it wasn't about me. It was about my daughter. From that point on, I thought that I was really on to something. It was then that I decided I was going to focus and concentrate on reading everything that autistic people brought to the table and put the things that were not written by autistic people to the side.

It was around that same time that I found Asperger Experts and learned about defense mode. That was a revelation for me, and I knew I was on the right path. It's hard to put into words the change that happened in my home when I fully felt at ease and stopped trying to be the mom trying to find all the answers, looking for something to fix.

I didn't need to fix anything. She is as she is supposed to be. It was calmness. It was ease. It was love. I love autism because I love my baby. That whole switch of my frame of mind came from learning, talking, and writing with autistic people. That changed a lot for us in our lives.

"Ainara's Book and Sharing Our Story." Ainara and I actually found ourselves getting tired of explaining things to everyone around us, especially because she's a girl, not the stereotype, and we were getting questioned at every step of the way. So we wrote a book together about how she experiences the world.

We printed 15 copies for our family and friends explaining her perspective, her life, and her normal. People around us sometimes felt awkward after the diagnosis, so we wanted to give a loving tone that addressed all sorts of things such as this is what the diagnosis means, this is why I behave differently, this is what you can do to help me. All you have to do is open up the book. There's nothing to hide. We have all the answers and explanations right here in this book.

We embraced a similar philosophy towards the school in terms of sharing our message. I thought, this is our school. We want to go there. I needed to build a team so the environment could be comfortable there as well. So we did it. Being open and forthright was so important for both of us, and that's why we decided to do it. If she wasn't on board, we wouldn't have done it.

It has gone really well with her classes. The kids are fantastic when they are included, and not in a way when they are feeling sorry for Ainara. It's all about respecting what she is going through and understanding how much effort it takes for her to be there. They have been awesome. She hasn't been bullied or anything like that and even has a best friend.

We've been open with parents too. When they have had these big parent meetings, I would speak up and tell them what was happening. We've got this diagnosis and this is what it means. This is why it's relevant for you, et cetera. I thought it was important for them to have the backstories so when kids come home they aren't telling their parents that Ainara is totally crazy and acting like a cat.

Sometimes she does things like that as a defense mechanism when she meets new people, and occasionally they can get scared, so it's important to let people know that it might appear a bit strange, but that's just her. I wanted to close the circle so that she would get the space to be her.

Openness to students and openness to parents were important, but probably most important of all was building up relationships with teachers. I remember being so afraid of stepping on toes, but I went ahead anyway. And the first thing I did was I ordered a book on autism and wrapped it up for a teacher for Christmas.

I said, I will not ask you if you read it. I just wanted you to have it in case you were interested. I ended up getting a lot of positive responses, and they really wanted it. I sort viewed it as, I am an expert in my child. You are a teacher and an expert in your area of expertise. So if these two can come together and respect the roles of one another, then you can build a beautiful relationship.

It's not like we need to talk to each other all the time, but I am very open and I will tell them if something's going on in our family. If Ainara didn't sleep well or something happened, then I will tell them that too. The more they understand, the more empathy and care they can have for Ainara.

In the end, it leads to beautiful relationships, and what they have achieved is what I am so grateful for. Ainara went from being a scared girl on the kitchen floor in the morning to someone who says, goodbye, Mom, kisses me, and then walks alone to school. Having safe people and a safe environment where she can feel understood and welcome has made all the difference.

Ainara really needed people in her corner that saw beyond her sometimes aggressive behavior and believed and understood that she was doing the best she could even if it didn't always seem like that. Fortunately, we were lucky enough to get those people around us and build a team that understood these things.

"Advice for Other Parents." Often, I am out in schools giving lectures and sharing our stories with teachers, and one of the questions I get asked the most is, hold on. Is the kid supposed to control everything? The short answer to this is surprising, and it is yes. It might be different for other people in other situations, but at least for Ainara, once you realize how much chaos she is living in every day and how much effort it takes to do the things she does, it's not that she is intentionally trying to be defiant.

She's not just going to go into a separate room and watch YouTube. The message that you give your child is that, you can do this. We trust you and we respect you. Tell us if we can make things easier for you. I think that that is an incredibly important foundation. Even today, Ainara is really adamant about telling people what they need to know about her.

Recently, she started a new school, and so she has told all her teachers that, when they see her rubbing her hands, that it's not a good sign. When she stops talking and looks down, that's another sign that she might need to leave the room and walk away. At her old school, they got really good at that.

When she would have distressed moments, there was a separate little room and safe space that she could go to where she had things from home-- pictures of her pet and our family. We know that we were really privileged and lucky to have this room, and it was a room where she held control.

She controlled when she came into the room. She controlled how long she stayed in the room. She controlled who was allowed to come into the room. It was all about building trust and autonomy. Not everyone is going to have opportunities for entire safe rooms and spaces like we do in Norway, but I think that providing safe spaces where your child can cool down, even if it's at home, is so critical.

In addition to that, build relationships and get motivated by cooperation. The effect that those things have had on our lives and Ainara's life has been so amazing and has brought us really beautiful experiences.