“How dare I?”

It was a question I asked myself after a yearlong depression over my daughter’s diagnosis.

At just over 2 years old, Kylee was diagnosed with autism after doctors exhausted every other reason to explain why she wasn’t learning how to speak.

After her final test, an MRI of her head, we went to see a neurologist for the results. My first question of him was, “What should we expect for her in the future?”

His response, “She’ll never be able to live on her own, but there’s a lot of nice homes you can put her in.”

Words cannot explain how devastated I was. Every hope and dream I had for my little girl was destroyed with that doctor’s response. It took a year for it to hit me. How dare I? How dare I want anything for my daughter that she didn’t want for herself? So what if she didn’t go to college, get married and have children and a career or anything else society tells us we need do to be happy? I wanted a healthy and happy child, and that’s what she was. Before me was the greatest teacher I had ever had. She taught me more about life, love and the person I wanted to be — more than anyone before her — and she did so without saying a word. She was, and still is, absolutely brilliant, and if the rest of the world couldn’t see her wisdom then that was their loss. I would pity them for their foolishness.

I set out to fight a war against autism, to cure her. My motives changed. I wanted her to have tools she needed to live among society to her best ability.

Finding resources to help us was a never-ending battle, but she has made outstanding progress. She has learned how to count to three, she knows most of her colors, she can sort shapes and coins, she can copy basic shapes, she can recognize the letters A, B and C, and she is starting to trace her name. She’s potty-trained and is using a communication device as a way to help her communicate her needs. She can now use it to say, “My name is Kylee,” and “I’m 15 years old.”

Much of the progress she has made has been over the last three years when she began going to a specialty school in Sioux Falls, South Dakota, 160 miles away from where we live.

The decision to send my then 12-year-old to the school was difficult, but I convinced myself that it was no different than college. She was going away for a better education, and she was still my baby girl. I would just have to wait until weekends to see her.

The fact is, that despite the increasing number of cases of autism, there is not nearly enough support for these children — especially if they are nonverbal or have a more severe case of the disability.

Kylee was on a waiting list to receive services from the Minnesota Autism Center for over eight years — those services never came. The most critical time for these children is before they turn 7. The window of learning never fully closes for these children — or adults for that matter — but they need access to specialists who know how to teach the way they learn. It’s also just as important to have people working with them who believe in their potential and not limit it like that doctor did so many years ago.

My daughter had her own behavioral analyst and therapist who worked with us at home for a number of years. In three weeks, one hour a day after school she learned her first sign and started to learn how to use a communication device. At the same time, we were fighting her home school district who wanted to deny her speech services. How many parents have the resources they need to be able to provide these services for their children? Far too few, in my opinion.

While funding may be an issue for politicians, acceptance is one everyone can play a part in.

When my daughter started kindergarten, I spoke to the parents at the kindergarten round-up meetings. I informed them that my daughter may be in their child’s class for things like circle time and classroom parties, but not for academics. I then told them if their child came home and said, “There is a girl in my class that is taller than me, still wears diapers and doesn’t talk,” and they respond with a look of shock, that’s how their children would look at my daughter. I asked them to respond differently.

I educated them the best I could so my daughter wouldn’t have to deal with an ignorant response. Sometimes I wish I could have that conversation with everyone — to tell them what to expect and the appropriate way to act, but I shouldn’t have to.

Our society is full of diversity. Some people are different, and that’s OK. Different is not less.

 

Kelly Wassenberg is the news clerk at the Albert Lea Tribune. She and her family live in Wells.