I’m excited to introduce to you Melissa and her sweet daughter Eden for this week’s Words In the Sand article. Melissa and I went to high school and were in marching band together. She is now a stay-at-home mom of three girls. Her youngest daughter, Eden, was diagnosed with Autism Spectrum Disorder three years ago. This is Melissa’s story of navigating the countless evaluations in the diagnosis process. Melissa blogs about raising her daughters at Lissa’s 3 Girls.
Hey everyone! This is Melissa and I am a stay at home mom of three beautiful (although VERY different) girls. There is Carly, my very independent, smart and beautiful (almost) 13 year old. Tanya is my adventurer/Tom boy who always will be a Mama’s girl she will most definitely be a scientist when she grows up and she is 11. And my youngest, Eden is a happy, silly, cuddly, and loving 6 year old. I live in the awesome state of Maine. I have a wonderful husband who works and attends college. We have been married close to 14 years now. I share my thoughts, experiences and sometimes some helpful behavioral tips that I’ve learned on my journey with my girls on my blog.
Three years ago Eden was diagnosed with Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), Speech and Global Developmental Delays. I think my story is important because Eden is so different than what most people see in a child with a Developmental Delay especially ASD. She is always smiling, lovable, always the center of attention, and is a non-stop chatter box. It hasn’t always been this way. Her father and I never even realized how developmentally delayed she was until she was 3 years old. Being the youngest of 3 girls, we always thought that she was a late talker and generally just a more difficult child (or even a bit spoiled), because our other two children were so different from her. Things turned out much more different than we expected from this adventure.
When I was asked all of the questions that the nurse or doctor asked me during those “developmental” questionnaires at doctor appointments I never really paid much attention to them. I just answered yes to the ones I thought she was doing. That seemed simple enough, right? During her 2 year check up when they asked me about her words I listed the 10 words she could say. At that time she wasn’t using any sentences or questions but I could understand her. I never thought anything about it.
In 2009, during a visit with her primary care physician, the doctor tried to talk with Eden, but all Eden kept saying was one word, which sounded like a question, “Doctor?” over and over again. I have to admit now it was kind of odd, but for Eden it was the way she had always talked. The doctor asked me a few questions about her speech development. She asked if Eden answered to her name and I answered “Not really.” She recommended a speech/language and hearing evaluation to be done just to be sure.
We were scheduled with a hearing evaluation, speech evaluation, and an appointment with Maine’s early intervention program called Child Development Services. It was very overwhelming for all of us. We had no idea what we were getting into. At first, the anticipation of taking your child to all of these places to let strangers “evaluate” your child was overwhelming. Second, Eden was never an easy child. Even on her best days, she ran away constantly and always got into stuff she shouldn’t. She was a kid that needed someone within an arm length to try and keep her from getting into trouble. Oh and not to mention if she got mad it was like World War 3! Every appointment gave me panic attacks. Going into the evaluation I was filled with questions: What if she doesn’t behave? What do I do if she starts to freak out? What will they think about my kid? Will they notice what I want them to? What will happen after? What kind of parent can’t teach their kid to talk or behave?
I soon found out that all of these questions were so normal. The therapists that ended up doing the evaluations were really understanding and probably have seen everything. If Eden misbehaved, they tried to redirect her; which is a fancy way to say try to keep her focused by making things more fun. If she didn’t want to cooperate they would just skip that part of the test and try to get back to it later on. They have tricks upon tricks to make things easier. After a while, I decided that it is what it is and if they can’t handle playing with my child, frankly they need to be in another line of work.
I was told by family members for a number of months before this that something was different about Eden. I had even done some research, which kept leading me to information about Autism. I had such a hard time thinking that something could be wrong with my baby. After thinking about it for a while and reading some information, I asked one of the evaluators about Autism. She told me that she couldn’t tell me if Eden did or did not have Autism, but then she proceeded to inform me the following:
Eden gives great eye contact, so she couldn’t have Autism.
She gives hugs and wants attention, so she couldn’t have Autism.
She can talk (even though she never had said a sentence), wait a few months and she’ll come out of her shell.
I was then informed that Eden passed all the developmental benchmarks at the evaluation and was handed a bunch of questionnaires to fill out.
It was during those questionnaires, I started to really watch her. I learned so much. I didn’t realize that when she looked at me she never really looked at my eyes. Her eyes were always on the top of my head and when she did look at me she couldn’t keep her eyes there. So, just because she was looking in my direction didn’t actually mean she was looking at me. Her eye would wander to the side of my head and still does everytime we talk. When she wanted someone to look at something or get something for her she would just look at the object and point. We went through the motions of “coaching” her through asking for things but she would only repeat what we said. She preferred to play by herself other than with kids her own age or even older kids. She would seek out a place where no one would bother her in a corner somewhere when we were at gatherings or parties.
I noticed other things about her. While playing she would only play with the same toys at one time. She would grab two ponies or two stuffed dogs. She would never mix and match toys, and we actually had more doubles of things than I realized but those were the only toys she would play with. She would play with her dolls, but she would never make them talk. They would make noises but no words. Eden loved to line things up and was very specific about the way things were set up. She would freak out when things weren’t the same. She did things with her fingers, like cross them, flick them like a penny, or even hold them all out straight.
All of these things were only noticed after going through the questionnaires and really observing Eden’s behaviors. These were all little things and so easily unnoticed (even today). It’s so important to be knowledgeable, if you are going to be into this world. Even if you are just having your child checked out just to make sure. These questionnaires are very important for people who don’t know your child. They depend on accurate and truthful answers so the evaluators can best help your child. The diagnostic criteria for ASD is here if you are curious.I did ask for Eden to be evaluated by a Developmental Pediatrician (a doctor who goes to school for pediatrics with a specialization in Behaviors in children). It wasn’t long after that we got the diagnosis of Autism Spectrum Disorder.
I didn’t know that when I started this process, I would be going on a journey that would end up here. I’m not sure what I would have done different, if anything. I felt like I was so unprepared in so many ways, but I’ve learned many things since then. I’m an expert on Eden. I know how to calm her when she is overwhelmed. There is so much in preparing for any situation like grocery shopping, restaurants, going to a friend’s house and anything that is out of our regular routine.
I’ve been fortunate very early on to have some great people who knew how to navigate the system of therapists and services. Now, Eden still needs support in her kindergarten class but she is fully mainstreamed. She still receives Occupational Therapy and Speech Therapy a couple of times a week. We have a specialist who comes into our home a few hours a week to teach her things like how to play, take care of herself and how to behave in a grocery store. Being a mom, I don’t know all the things she’ll have trouble with and with this assistance the things she needs to learn are all broken down into small tasks. As she gets older, the specialist will teach her how to live independently and social skills. I also have had the opportunity to go to parent training and read a lot on behavior prevention so we can know what to do when hard times come up. It is a learning process and it’s never going to stop.
Eden is a child and Autism is a part of who she is. Early intervention has been such a blessing for our family. Eden has the best memory of any person I have ever met and memorizes things almost instantly. She makes anyone who meets her feel loved and appreciated. We will always have our share of difficult times. She will always have challenges as she learns things so differently than other children. It is because we recognized these differences early that we were able to use them to make her so successful.
Thank you for sharing your story Melissa. If you have any questions for Melissa or just need another parent to chat with about your child please feel free to e-mail her at lissa914us@yahoo.com.
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