I am Alexandra Nicole's mama. My daughter is a beautiful, 4-year-old girl. She has the regressive form of autism. Alex met all of her developmental milestones for the first year to year and a half of her life. She was a very happy baby, a good sleeper from the start, and she looked at us and imitated us, and we fell head over heels in love with her. She was the tenth grandchild on my side of the family, and no one suspected anything was wrong early on.When Alexandra was about to turn two, I noticed she was far behind her peers in terms of speech development. At the time she had only 15 words, and the chairman at my child psychiatry fellowship was telling me that a child of 2 should have a vocabulary of 200 words. We had her evaluated by the Early Steps program, and they diagnosed her with a speech delay alone, since her interactions seemed normal. A "CHEM specialist" visited her daycare for an hour once a week to play with her. We also enrolled her in speech therapy three times a week.
The speech therapist told me that Alexandra did not possess the necessary building blocks for speech development--she lacked the requisite attention, imitation, and eye contact. At home, we began noticing that Alexandra stopped looking when we called her. She would spend hours playing alone, emptying and filling buckets of blocks. She loved stacking things, climbing things, and hiding in corners and crevices. She would not initiate any form of interaction with us; instead, she spent hours flipping the pages of books and singing to herself. She lost all of her words. One night I held her and a glazed look came over her face.
My husband and I worried that Alexandra might have autism. I researched autism on the internet. I devoured books on autism, especially those written by Jenny McCarthy. We expressed our concerns to our pediatrician. I made an extra effort to engage Alexandra and describe every part of our daily routine in words. We saw very little progress. We were finally able to enroll Alexandra in a specialized daycare with therapy services, while I finished the last six months of my child psychiatry fellowship.
The day after I finished the program, we started Alexandra in 3 hours daily of one-on-one ABA (Applied Behavioral Analysis) therapy. Through Alex's new therapy program, I was introduced to the Son-Rise approach and realized, for the first time, that great results could be achieved if parents acted early and viewed their child as a gift, rather than a tragedy. We placed Alex on a gluten-free and casein-free diet. I gave her probiotics and multivitamins, as well as omega-3 rich foods. Weeks into these treatments, we heard Alex sing "Twinkle, twinkle, little star" for the first time. Alex began giving us more eye contact and would even stare at us at times. In therapy, she was taught to high-five and ask for "more" in sign language. She was matching numbers and images and completing puzzles. With the passing months, she began showing more affection (holding out her head for a kiss and hugging us). She also began understanding and responding to verbal commands ("Come here," "Let's go," "Stop")--a very useful development.
This summer we've been able to enroll her in one-on-one afternoon therapy sessions in a center which has been highly recommended by people in our lives also affected by autism. Starting next week, Alexandra will start a new verbal behavior program in the mornings, so that she'll be up to 6 hours of one-on-one therapy a day.
Our hope is that she will one day be able to use words to communicate with us. Alex has said "Mama" or "Daddy" on rare occasions. I have overheard her say the alphabet and numbers (1-10), especially when she is reading an ABC or number book. She will not say these on command, however. Alexandra babbles quite a bit (always has) but still engages in a number of obsessive, ritualistic behaviors throughout the day. Nowadays, she comes up to me and presses her nose against my face and says "Wee, wee" several times. I guess she's heard me say "Wee" a lot when I playfully pick her up and carry her into my arms.
This blog is about Alexandra, and our quest to reach her. We hope to one day be able to hear our daughter speak. We know we are not alone.
