Having a Child with Autism - A Mother's Perspective
By Dr. Isabel Villica˜a, DMD / April 1, 2015
From the time Catalina was six months old, I knew there was a problem. She had a very unusual aversion to water. Every time we tried to give her a bath, she would scream and thrash around uncontrollably. It was so horrible for her that she actually developed an incredible physical strength requiring two to three adults to actually pin her down just to touch water on her skin. And it was not just water that would drive her to insanity. It was the feel of a diaper, sleeves on clothing, and even the soft touch of her parents. She often removed her clothing entirely, even if it was cold, because the feel of anything on her skin was just not acceptable. Once again, it would take two to three adults to pin her down, kicking, screaming and flailing around just to get her dressed. Then it would be a complete emotional meltdown for hours. She often did not want to be held, which is highly unusual for a baby.
For a while, we thought maybe she could not hear. We would talk to her and make loud noises, but she would not turn and look. Then we realized that if we turned on the TV to her favorite cartoon, she would look immediately. She also had very little facial expressions. My son, Sebastian, who is only fifteen months older, was giggling by the time he was only four months old. With Catalina, however, there was virtually nothing. It started getting worse, not better. Noises seemed horrible.
The sound of my electric toothbrush would drive her crazy, and sometimes she would even scream at the sound of the air conditioning running in the car. It was a daily struggle ... to bathe, to dress, to diaper, to do anything at all. She also refused to go outside in the light, closing her eyes and screaming at the bright light. It seemed like she was living in constant discomfort, and I struggled to figure out ways to help her, but to no avail.
Things started getting stranger when she turned two. She started engaging in self-abusive types of behaviors, like banging her head up against the wall or biting herself so hard that she would tear her skin. She could fall down, have streams of blood running down her, and not even feel it. She was totally oblivious to pain. I would just sit in the corner and cry, not knowing what to do. I actually thought she was having psychotic episodes ... either that, or she was just a 'very bad child.' Several times, Catalina would disappear, and I would find her hiding in a dark quiet space or pinned behind couch cushions. I know all children are different, but I also definitely knew that my experience so far with her was completely different from what I had gone through with my son. My pediatrician finally insisted that I go see a developmental pediatrician. I had no idea what was coming next.
The day of our first appointment was a day I will never forget ... February 11, 2013. After spending almost two hours with us, Dr. Judith Aronson-Ramos told us, "Your daughter shows several traits of being on the spectrum." What spectrum? What is this lady talking about? She kept telling us how Catalina was on the spectrum, and all of the steps we would have to take: Contacting Broward County Early Steps, starting her in Applied Behavior Analysis (ABA) therapy, speech therapy and occupational therapy. My head was spinning. What was happening? I thought we were going to hear "Your child is a bad little girl, and you need to be more strict with her." And now she is on some "spectrum" and needs to be in all sorts of programs and therapy? Never did I think that in those two hours, my life would change forever.
As I slowly started telling my family and friends, several of them indicated that they knew all along. How I wished they had said something to me sooner. They helped me come to terms with the fact that Catalina had Autism Spectrum Disorder. The next few months of my life were the most difficult times I could have ever imagined having to endure. I felt confusion, denial, depression and frustration. After about a month of spiraling into a very dark hole in my life, I finally realized that I was worsening the situation. Catalina could sense that I was depressed and desperate, and it was making her unusual behaviors even worse. I decided to regroup and take action. Not only did I have to be strong for her, but I also needed to be strong for the rest of my family: my husband Patrick, my son Sebastian, who was only three, and my newborn daughter Valentina.
Anyone who has a special needs child can understand the amount of hours that are needed to find the right help for your child and the number of hurdles that must be conquered to get anywhere. I cut back my hours at work. It felt like there were not enough hours in the day to accomplish what we needed to do for her ... to set her up for success. I was determined to turn things around for her, to get her to allow me to bathe her, to cut back her constant all-day tantrums, to be able to put a sweater on her and ... to get her to TALK. The next task was interviewing therapists in all fields ... ABA, speech and OT... until I found the right fit for my daughter. I decided to set up a therapy center in my own home. And so it began ... seven therapists per week for a total of 27 hours. I dove in, head first, and absorbed everything possible to help my child succeed. She started speaking. She could tolerate washing her hands ... then to bathe ... one foot at a time, quite literally. The day I first put a sweater on her without having to pin her down is a day I will never forget. I actually left the room and cried.
It has been almost two years now since my daughter was diagnosed. It's amazing how much progress she has made. She is actually a different child. We do go through our weeks of regression sometimes however. Whenever there is a break of pattern ... a change in schedule, etc., ... it sets her back a step, and we have to work through it. Sometimes I think, "Oh my goodness, everyone was wrong ... she is perfectly fine!" Then I am reminded shortly thereafter that she is so different than her neuro-typical counterparts. My heart sinks, but I need to keep going forward. This is my reality. It is her reality. And it is a reality that several parents have to face. To talk about my daughter Catalina is actually very difficult for me. I do it to raise awareness of a situation about which I myself was ignorant. Dr. Aronson-Ramos, who is well known in her field, calls my daughter "the poster child of early and aggressive intervention." I could not agree more. There are so many children out there who have a serious problem, but their parents do not want to accept it and are in denial. I see it every day, even amongst my own patients. They believe their child will just grow out of it, and that's what I thought too, for a while. For many of those children, by the time something is actually done, it is too late. Studies show that early intervention is the key in trying to give your child the most "normal" life possible. There is help out there even for families who cannot afford private therapy. Early Steps, Florida's early intervention program, is an unbelievable resource available to all families in need of support. Had I not pulled myself together and been aggressive in getting the help Catalina most desperately needed, I am still scared to even imagine how she would be today. My daughter is bright and beautiful and the light of my life. And she is Autistic.
Dr. Isabel Villica˜a, DMD is the owner of Parkland Family Dentistry in Parkland.
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