I have always loved April. Growing up, April meant Easter, Spring Break, vacationing at my grandmother’s house, and the beginning of beach weather. Since I’ve become an adult, April has taken on an even greater meaning for me. It felt like April was the best time for me to write my first blog, because my life has become April all year long.
I graduated from the University of Florida in December, 1994. I passed the National Certification Exam shortly after and became a Registered Occupational Therapist. Believe it or not, April is Occupational Therapy Month! I love being an OT. I started out working in nursing homes, which I really enjoyed. I made the switch to pediatrics in December, 2000. I then truly fell in love with OT. When they tell you to do what you love and you will never work a day in your life, it is true. I love all of the kids I have the privilege of working with. However, I quickly developed a special place in my heart for kids with autism. In fact, I had at one time pursued opening an autism clinic. God, however, had other plans for me.
Hurricane Ivan hit in the fall of 2004 and turned our lives upside down. Our house was flooded, and it took months for us to rebuild. When we finally got settled back into our home and our lives returned to a state of normal, we found we were pregnant. I was 37, and had pretty much given up on the idea of kids after two earlier miscarriages. When our daughter was born on Jan 31, 2006, it was one of the best days of our lives. We were finally complete as a family. Plus, I could now watch how a typical child develops daily and have that information to compare with my delayed kids at work. I was a therapist, so my child would be perfect. I would help her reach all of her milestones and she would be a regular kid. I quickly realized that just as death is no respecter of persons, neither is autism.
When my daughter was between 6 and 8 months, I started noticing the signs. The signs were there earlier, but I wasn’t really putting them together. I could only hold her a certain way on a certain side. She would fling herself backward when I carried her on my hip. She loved to swing constantly. She was fascinated by the credits rolling at the end of any television show. She wouldn’t work for a toy, but would play with whatever was close to her, even it was just the carpet or picking at the blanket she was on. I started noticing how she would seem to look “through” me instead of looking “at” me. She was late with most all of her milestones. Then the hands slowly started flapping. I denied it as long as I could, but deep in my heart, I knew. Rhianna had autism. April, of course, is Autism Awareness Month.
This is the part of my blog that I want to stress to parents to trust your instincts. If you know that something seems different about your child, keep looking for the answers until you get them. I was lucky enough with my profession to know that the signs I was seeing in my daughter pointed to autism. When her pediatrician told me that she wasn’t autistic because she would inconsistently respond to her name, I wanted to question him and ask him where he was getting his diagnostic criteria from, because that is NOT how you determine if you need testing for autism. When I explained to him that I really did know what I was talking about (and showed him the video of her hand flapping), I was given a referral to neurology, OT, PT, and Speech Therapy. I basically had to demand it. Amazingly, the pediatrician was shocked when our neurologist agreed with me.
We went through all the initial testing. We had blood-work, an MRI, and an EEG. When she was diagnosed with having seizure activity in her left temporal lobe, I was actually excited. That could explain her symptoms, there were medications to treat seizures, and maybe she didn’t have autism. When we had her seizures controlled, that is when reality sunk in. Not only did she have epilepsy, but she really did have autism. An Early Steps evaluation and the ADOS confirmed it. I was so relieved that I already had her in therapy. I was so blessed that I knew the signs to look for. I was so glad that I didn’t let our pediatrician talk me into waiting for intervention.
Early intervention is the key. I can’t tell you how many times I crawled around behind my daughter with a book in my hands, reading to her. I can’t tell you how many therapy sessions we went through and I felt like I was torturing my child. I can’t tell you how many people still look at me like I am an awful parent when she has a public meltdown, or even if I need to be firm with her on something. (Autism does not mean you don’t ever discipline your child. You are constantly molding their behavior.)
I can tell you that I love my daughter. I can tell you that every milestone she achieves is a high point. I can tell you that nothing in her development goes without notice and celebration. She is 11 now, and gives hugs to everyone that will let her. She never meets a stranger. She might not be able to carry on a typical conversation, but for the child that was non-verbal for so many long years, she is a little chatterbox.
I realize that my story is different than any other, because if you’ve met one person with autism, then you’ve met one person with autism. I can tell you that Early Intervention is the key to the best chance of improvement. I can also tell you that as an OT with an autistic child, every month is April for me.
…..until all the pieces fit…..