This week we received the diagnosis that our oldest daughter, Tennessee has Moderate Autism. We have been walking through this process since last October. I was hesitant to blog about this. To be honest I'm still processing what this means to me, my daughter and our family. I felt that blogging about it may help my process as well as others who may be experiencing similar situations.
Ever since Tennessee was a baby she would do certain "quirky" things. I attributed these "quirky" behaviors as her personality. Since she was my first, I honestly didn't know what to expect from a child's development, aside from the pediatric guidelines that she seemed to eventually meet. So nothing "medically" seemed amiss. Since she was 4 weeks preemie she was always a little delayed, but I was assured by my pediatrician at the time, that she would fully catch up by age 2. And she seemed to eventually meet all the milestones. However, there were still these "quirky" behaviors. For example, she didn't really like people touching her unless she initiated it, including her father and myself. She preferred to be alone "reading" a book, rather than socialize with her friends. She would rock and bang her head against the wall, to fall asleep at night. She would have a little nervous tick of rubbing her thump nail against our fingers. And she had an incredible ability to memorize verbatim books, songs, movies, and melodies by the age of 2. She also, never seemed to hear us when we gave direction. Nor did she seem to understand time-out or correction. Now as I write this, I think Oh MY GOSH! How did I miss all those signs?! But when everyone around me including my pediatrician says, she seems "normal", I trusted them more then my own gut.
The Melt Down:
We had just moved to our new city, Nashville. I decided to take Tennessee (3) and my youngest daughter (16 mo), to the Science Center. They had a preschool time that seemed fun. We did most of the exhibits and explored the different levels. Tennessee was in love with the planets and was running around playing with everything. We then went into the human body exhibit, which is geared toward kids with bright colors, lights and loud sounds. As we walked into the exhibit, I noticed Tennessee grabbing my hand a little harder and walking very close to me. My youngest one was running around playing with all the different stations and laughing. I encouraged Tennessee to go and play. And then it happened, the Melt Down. She had never thrown a fit before or even screamed until that moment. She lost it, she began to grab onto me and scream and cry. I didn't know what to do, I had never seen her like that. Her eyes were telling me she was scared, but she couldn't verbalize what she was feeling. So I grabbed my youngest and held Tennessee in my arms and ran out of the building. I was able to finally calm her down in the car, and then it was like nothing happened. She switched back to her happy self, once she was safely strapped in her car seat watching her movie. I on the other hand, was overwhelmed. I went home and told my husband what happened and then little things began to click. I mentioned to him that I thought maybe Tennessee might have a development issue, possibly autism.
The Process of Diagnosis:
I called my sister-in-law later that day. Her youngest daughter is autistic and she is a wealth of wisdom on the matter. I began to tell her all the little things that I had dismissed or had dismissed by my pediatrician in California and then about our incident at the Science Center. She then told me she felt like she saw signs, during our last visit to San Diego.
I made an appointment with our new Doctor immediately. At our doctors visit, I relayed all her signs and was expecting a dismissal. The doctor looked at her and looked at me and said, "Mom, always trust your gut. Hearing what you are saying I agree with you 100% and I will be referring her to a specialists immediately." I was shocked to be honest, finally a doctor who validated what I had been feeling!
Of course the appointments and assessments take ages, we made our appointment in October and couldn't see him until February and then just now at the end of April received our results. However, through the whole assessment process our pediatric office handled us and our daughter with such care. I can't say enough praise!
With the birth of our third daughter, Tennessee's behaviors have increased. We now recognize she has oral sensory issues, which is very stressful. Since I have to constantly be checking that she isn't putting small items in her mouth or too much food as she has a tendency to cause herself to choke on food. Her melt downs, anxiety, repetitive behavior & conversations, and OCD behavior has increased significantly with the change in our home. And with that increase came the final diagnosis. I felt a sense of relief when I read that report, I finally felt like I could put words to what we have been living.
There was a sense of relief and an overwhelming flood of questions. The last three weeks have been very challenging for me. I have sat by Tennessee's bed as she sleeps and cried. Not because she has autism, but because I feel like I can't connect with her, that I'm going to fail her, that I've already made mistakes because I didn't know what she needed, and that she will feel different. All these worries and anxieties to protect her began to break me down. Then I remembered a Word God spoke to me. It was nearly two years ago, Shawn Bolz a man with an incredible gift of hearing God called out Tennessee's name during a service. My husband was the only one there and went to the altar. Shawn began prophesying over Tennessee, incredible things that she would do and become (which I'll share in the next post), most having to do with music. He never met us and didn't know anything about us. Then right before he finished he said, "And Ailina, is the right one to be the mother of her. She's the right one and has the gift of mothering." I remember when I heard that I was thinking, "Well that was just him being nice and saying something nice about me." I didn't really think much of it. Until this last week, when I was at my end and felt like there was no way I could mother this amazing child and give her what she needed. God in his goodness reminded me that he chose me for her. That I was the 'right one'. I sat there humbled and thanked God for that moment of encouragement. I'm not going to do this perfectly. I will make mistakes, but I also know that my love for her will be an anchor that no matter how many times I get it wrong, love will always win.
So to every parent out there who may be feeling like not enough, just know YOU were specifically chosen to love and raise an amazing child. You have everything you need to raise your child. You are 'The right one.'