I would like to introduce you to Margie. Margie is author of two blogs Tired Mom and Speaking On The Spectrum and mother of two.
She wants to share with you what her experience was learning of her child’s diagnosis. It’s so important to share our stories and Margie is about to let you see Autism through her eyes. Be sure to check out her blogs to read more of her story.
Thank you Margie for allowing us step into your shoes for a few minutes and briefly share your life.
Also if you are interested in sharing your story here, contact me, and I will be happy to help.
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/ )
Cindy, I am so sorry for what you and your family went through. I can't imagine the pain of losing a child, but I'm glad he was happy. We've had a scare recently where my daughter developed something called HSP (Henoch-Schonlein Purpura) and it can be potentially fatal as it can affect the kidneys and cause internal bleeding. Lucky for us, she seems to be mostly over it, but we were scared for a while of losing our little girl. Thank you so much for your comment and for sharing a small piece of your life with me.
My recent post No News For Thursday
I can sure relate to this. My youngest son had full-spectrum and so much of what you said sounds familiar. I felt like a rug had been pulled out from under me. Unfortunately he also had epilepsy that couldn't be controlled with medication and we lost him less than 2 years ago at about the age of 20. I miss him like it happened yesterday. Fortunately he was always a happy boy and lucky in that he didn't really get that he was different than most kids. Like you I didn't have anyone around who could understand what I was going through. I was lucky in that I had older kids who helped out tremendously and to this day will always have my thanks and appreciation. Thank you for this article.
Thanks for this post. My son did not regress into Autism, but we did struggle for awhile before getting him diagnosed and I did go through the emotions of feeling that I had caused the autism myself by something done during pregnancy.
I think a lot of moms almost always try to find a way to "blame" themselves first. I'm not sure why it's almost a normal reaction, but it definitely took me a while to come to grips with reality and figure out that I did not cause her autism.
My recent post No News For Thursday
Thank you so much Rob!
My recent post What Goes Into My Autism Blog?
You are most welcome. I thank you for sharing your story and letting me be a part of it.