The Day My Whole World Turned Upside Down

When my daughter was a year old, I knew something was wrong. She stopped smiling, she stopped saying “mama” and “dada,” and she always had a blank expression on her face. She was extremely reserved and refused to play with other kids. She was also very set in her ways; everything had to be done exactly the same way at exactly the same time, every day. Though I voiced my concerns to Beauty’s pediatrician at her 1-year check-up and her 18-month check-up, I was told, “Give her more time.” I wish I’d listened to my gut instincts.

At Beauty’s 2-year check-up, the pediatrician finally said, “Ok, let’s get her evaluated.” At the time, I wasn’t sure what to think. I did want answers as to why my daughter wasn’t acting “normal,” but I also wasn’t prepared to handle a diagnosis of any kind, especially because that wasn’t in my plans! My plans were to have a baby, love and educate it, and have her grow up and have anormal life. Getting an evaluation is not a normal step in a child’s progression. Her doctor referred us to an early intervention program in our area (Jordan Child Development Center) and within 1 1/2 months, we had her IFSP (Individual Family Service Plan) and speech therapy visits all set up. I wasn’t prepared for what came next.

Needless to say, scheduling therapy visits and thinking about possible diagnoses for my daughter was stressful, not to mention that I had just had a baby 2 months prior and my husband was working long hours at the office. I already felt like a single mother and now it felt like I was going through this whole stressful ordeal alone. When it came time for Beauty’s first visit with the therapist, I was extremely nervous. Beauty didn’t like being around people and who knew how she’d react to a complete stranger in her home – in her personal space! But, of course, the inevitable happened – the doorbell rang.

In walked in a very happy, spirited woman named Kimberly, and with a smile on her face she said hello to Beauty. I felt at ease with her right away. Somehow, I knew they sent the right therapist for my child and I was so much more relaxed. My daughter, however, ran to the other side of the room and hid in the hallway. Kathy spent a couple of hours with us, allowing Beauty to get a little more comfortable so the evaluation could be performed effectively. Once the evaluation was complete, I was informed that the evaluation alone wouldn’t be enough to make a diagnosis. Several speech therapy sessions would need to happen first so the therapist could have adequate time to monitor and evaluate Beauty’s behavior. DARN! I was really hoping I’d get an answer right then and there, so my questions would be answered already. I had to be patient a few months more.

The evaluation occurred March ’08 and Kimberly came by the house twice a month for 3 months, until she finally had enough information. She made a phone call to the pediatrician and discussed her findings. Then I got THE CALL from the pediatrician himself in June ’08. I knew once I picked up the phone that my whole world would be turned upside down. Somehow, I just knew. Here’s what I remember about that conversation: “Blah, blah, blah….your daughter has Autism…..blah, blah, blah…”

I hung up the phone and broke down in tears. My world was shattered. Everything I dreamed for my beautiful little girl was destroyed and gone. Autism – AUTISM – really? I couldn’t wrap my brain around it. I couldn’t believe it. I didn’t want to believe it. I looked at my girl, watching her Baby Einstein DVD, and I cried until my stomach hurt. I got up to sit next to her and hug her, but because she hated hugs and people getting in her personal space, she yelled at me and pushed me away. I slid off the couch, onto the floor, and cried some more, this time until I could barely open my eyes. I just kept thinking, “Did I do something wrong? Was it something I did during the pregnancy? Why didn’t I push harder with the pediatrician a year ago? We lost all that time – this is all my fault…”

Eventually, I got up, wiped the tears off my face and continued about my day. Chores still needed doing, meals still needed to be prepared, and I had a newborn to take care of. By the time my husband got home that evening, it was almost midnight. He came to bed and went right to sleep. I couldn’t bear to tell him the news. He was already so tired and worn from his day at work, so I decided to just let him sleep. I was relieved. I didn’t want to tell him anything yet, mainly because I was still in shock. For 5 days, I carried around this devastating news and kept it to myself, without sharing it with my husband. I didn’t want to burden him, especially because he was working on a really big project at the office and he needed to focus on that. Once the shock wore off and the project was over, five days later, I broke the news to him.

We were in bed and it was midnight. Our newborn lay sleeping in his cradle beside our bed and we had a very low night-light on. I don’t remember much about the conversation itself. What I do remember is laying there in each other’s arms, sobbing as quietly as we could so we wouldn’t disturb the baby. I can’t remember how long we cried – no, how long we mourned for our daughter. It was as if we were given a death sentence. We didn’t know any better at the time.

I wish I could say I had a great support network around to help me through those difficult months, but I didn’t. I had no one. The only ones truly there for me was my caring, supportive, and forgiving husband and my best friend Telisha. She, however, had a very busy life with two kids and no access to a car, so unfortunately, she wasn’t able to spend much time with me physically. My husband was the only one I could actually lean and cry on, though I didn’t do that very often. I’m the strong, independent type, and I didn’t want to be a burden to my husband.

Eventually I got through it. I’m not sure how, but with time I learned to accept the diagnosis, and learn that my daughter was still my daughter and she needed my help. That’s when I decided I was going to be proactive about this. I wasn’t going to take this lying down. I was going to do everything in my power to help my child overcome this thing called autism and nothing was going to stop me. In the meantime, I needed to do research on autism and figure out what my next step would be (but those details will have to wait for a later blog post).

(BTW, check out my autism blog:http://speakingonthespectrum.blogspot.com/ )