Dear Learning Expressions Readers,
I can remember like it was yesterday, lying in my bed, talking to my husband, tears running down my face onto the pillow. We had just received confirmation - our 20-month old daughter had been diagnosed with autism. And like any good husband should, he listened and said, "She's gonna get better." That night, in that bed, those few moments were just about the only minutes I allowed myself to cry and mourn the loss of having a "normal little girl". The tears were a cleansing release. And acceptance followed right behind. I accepted the diagnosis, but would not even consider accepting the bleak future that had been written in all the publications I had read. I pushed up my sleeves and set on a mission to learn everything I could about what made this little girl tick. I was determined to give her as many opportunities to be happy as possible, while also minimizing her stress and anxiety. After all, isn't that all we want for our kids, to be happy?
Kiki had no language, which lead to constant frustration and seemed to be the trigger for all her behaviors. I always related to the story of Helen Keller and her tantrums before her teacher Annie came along and taught her to communicate. So language was our top priority. Through mirrored glass, I watched every Speech Therapy session and studied the therapists. I imitated how the therapist held things up to her eyes if Kiki wanted something, in order to encourage eye contact. I learned to speak clearly, in short, simple, sentences. I labeled our entire house with words, describing everything from “door” to “step” to “bed”. I learned simple sign language to visually reinforce what I said, words like "drink" "more" "help" "eat" and "finished".
I became a behavioral detective. I observed and studied her behaviors; I learned what made her excited and giddy; I learned what ticked her off. Just to get her to look at me I even learned to talk like Barney, saying her name just like the purple dinosaur! Those early days from 20 months to 5 years old were learning-rich years, I knew that from every baby book I read - the first few years in any child are the most important. We could not afford an in-home program. We could not afford hired-staff, nannies, mother's helpers or any additional support. We had to learn them ourselves and do it all ourselves.
When I look back now, I have so much respect for that frustrated little child. All she ever wanted was to be a part of our world. She learned at a much-slower pace, on her terms. We got down to her level, down on the floor with her. We were patient. We waited for any sign of improved communication or understanding. Flash forward now - she's 17 years old, a sophomore at our neighborhood high school. She is active in Special Olympics, and her high school choir and leadership class. And guess what? She still has Autism, but Autism does not have her! Autism gave us so many gifts - patience, tolerance, acceptance, and the purest love, from the purest heart, in our girl, Kiki. I would not have made it through those early years without the support from others. I asked so many questions and I read so many books. Since April is Autism Awareness Month I would like to share a few things I learned along the way, that helped make the journey a little easier during those early, most challenging years.
1. Never give up. If it's not working, step back and try a new approach. Sometimes when we are working to correct or remold a behavior, it can take years! (for example, a nose picker.....I had to place a box of tissue in front of her over and over, for years......ultimately she learned to use a tissue as opposed to her preferred finger)
2. Get your child around as many typically-developing children as possible, especially if your child imitates his/her peers. Try to empower the other children. Support your child by shadowing, engaging and encouraging the other children to join in. Bubbles at the park or playground are a great way to do that! Our yard was always the party-playground yard, we always had slip 'n slides, baby pools, bubbles, anything to encourage the other kids in the neighborhood to come over and play!
3. Do not assume that your child is not listening. They hear. They feel. They are SO intuitive. They FEEL our tone, our frustration and the frustrations of others. Speak calmly without emotion when you are most frustrated. We verbally praised her for everything she did right. So funny now, when I get into the car and buckle my seat belt, my beautiful daughter gives me praise, "Good job putting your seat belt on mom". Those are paychecks to me. We are the number one role model to our children. Label and define everything you do as you are doing it, as if you are on a tv show, labeling and explaining your daily tasks. Give your child constant color commentary, they are listening.
4. Sensory Sensory Sensory stimulation, they need it. Provide lots of sensory experiences, every day. If they like to spin - get a tire swing (we installed one in our garage!). Fill Rubbermaid tubs with rice and beans and let them play in it like a sandbox. Hide letters, animals, and toys inside it, and use it to meet their sensory needs while you work on language!
5. Use visual strategies - make picture stories or videos to teach basic self-care skills. We used neighbors and babysitters to make little 2 minute videos of "How to brush you hair." Kiki loved seeing her teenie-bopper babysitter making this silly video, but guess what!? She memorized it, played it over and over and learned SO much! (Bathing, dressing, sharing, asking, so many social skills and self care skills!) Use photos to label their emotions and feelings. Be animated when you read their favorite stories and be sure to focus on the feelings.
6. Educate, inform and empower the teachers, kids and parents in your child's class. Do not be afraid of the word Autism, it's just a word. Knowledge is power. Empathy, tolerance and acceptance come when others understand the behaviors your child may be working through in class. Be honest, our kids can have some serious meltdowns. Autism is not a scarlet letter. I would wear an A on my chest like a badge of honor. Your child's typical peers are the best asset your child will ever have. They grow up and become little advocates and make the world a better place. I have faith in them, praise them and thank them for being good friends. All children love positive praise!
Thanks for reading!