The past couple of months I haven’t posted as much here on the good ‘ol blog. I’ve been sharing my Project Life pages each Tuesday and occasionaly sharing a funny story about the girls. The truth is that there has been a LOT going on. We’ve been processing through information and emotions. First and foremost my concern has always been and will always be about my girls and being sensitive to their feelings about what I share here in this space. I’m so thankful for our family and friends that have walked this road with us and who have encouraged us to take our time in processing this information, as long as that may take. I just really haven’t felt like sharing about any of this until now.
I have shared a lot about Hailey’s journey as an infant, being diagnosed with Failure to Thrive at 11 months old, and the subsequent placement of a G-tube to nourish her for the following 2 years. If you missed any of those posts you can go back and read them here. Shortly after moving to Arizona last April we started the process of having Hailey tested to determine whether or not she fell somewhere on the autism spectrum. After a long, arduos process, we received a definitive diagnosis of Asperger’s Syndrome in February. For those of you who don’t know what Apsperger’s is, it is often times referred to as High Functioning Autism. It falls under the autism spectrum and is usually characterized by difficulties in social interactions, along with restricted and repetitive patterns of behavior and interests. It is often times, though not always, diagnosed later than autism and PDD-NOS.
I want to share with you a couple of reasons why it took so long for us to have Hailey evaluated. It is my hope and prayer that our story might help others in a situation similar to ours.
-Having our 1st child diagnosed with autism played a big role in our delay. Hailey functions at a much higher level than Skylar not only academically but in everyday day life as well. Because she is independent in so many areas our original thought was “She has just picked up some of Skylar’s quirky habits because they are around each other so much.” I didn’t want to be THAT parent that thought “since I have one kid with autism, I bet my other kid is going to have it too.” I didn’t want to overreact. I didn’t want to have Hailey labeled if it wasn’t the case. And honestly, I wished with every fiber of my being that I was wrong!
-Every one of Hailey’s teachers, since the 2nd grade, has approached me regarding Hailey’s difficulty with attention, staying on task, and forming friendships. In meeting with those teachers we always seemed to come up with a reason that she might be “off”. For the 1st half of 2nd grade Chris was deployed to Afghanistan and she really struggled emotionally with that separtion. After he returned, she was less emotional, but still had multiple issues in the classroom. In 3rd grade Chris was again gone for several months conducting a special study for the Air Force. He ended up leaving that assignment early as his father took a turn for the worse and later passed away after a 9 month battle with brain cancer. It was easy to attribute Hailey’s difficulties in class and her withdrawn behavior from other children to the fact that she missed her dad & just lost her grandfather. However, in 4th grade, Chris was home and our lives were in a completely normal routine. When her 4th grade teacher approached me shortly after Christmas with her concerns, I was aware that we needed to have some evaluations done. Shortly after that we received word that we would be moving. Chris and I agreed that once we moved and got settled in that we would request further testing.
After 2 weeks of being in her new classroom here in Arizona, Hailey’s teacher requested a conference with me. This gal had been teaching for over 30 years and clearly knew her stuff! I knew what she was going to say. “Difficulties staying on task. Multiple visual cues needed to get back on task. Extremely fidgety. Would rather play by herself even though the kids in her class were inviting her to play with them.” At this point I told her teacher about Skylar and the fact that she had autism. I then said “I have had some concerns that Hailey might possibly have Asperger’s. Would that surprise you?” When she answered “Mrs. Coryell, that would not surprise me at all” I knew that my gut feeling was right.
Those of you who have been down the road of testing know it is not a quick process. There are many appointments, referalls, & lots of time to wait. Prior to Hailey having the full neurocognitive testing done, we met with the psychologist for about an hour. She asked Hailey all sorts of questions and the two of them had a great rapport. I was so thankful that we had been placed with this psychologist as I knew that Hailey would be willing to work with her as she had such a sweet personality.
Following the testing we had to wait several weeks to get the results as the psychologist had 7 hours worth of tests to go through and evaluate. One Wednesday night, while we were waiting for the results, I had the opportunity to take Skylar and Hailey out to dinner before youth group at church. Chris was working so it was just me and the girls. We went to Red Robin and when we came out of the bathroom Hailey saw this picture.
I remember her saying “That is such a funny picture! Who is that man?” I told her that it was Albert Einstein and explained a bit about him. I told her how there is a lot of speculation that Einstein had a form of autism, possibly Asperger’s. She was so interested in learning more about him. We talked about Asperger’s and other famous people from history that they believed had Asperger’s. We talked about how a lot of individuals with Asperger’s have difficulty forming friendships and some of them have sensory issues. Hailey said “that sounds a lot like me.” I’m truly thankful for what I know to be a door that the Lord opened allowing me to broach the subject with Hailey. This conversation was integral in setting the ground work for us to share with Hailey later about her diagnosis.
We are already undergoing the process of getting the necessary help in place for her at school. We have no doubt that Hailey will be even more successful in school now that we know how to help her. I am really thankful for her teacher this year, who has worked with us since the 1st day of school to help accomodate her needs in the classroom. She has been wonderful in helping Hailey to have a successful 5th grade year. We are diligently praying about what is the best setting for Hailey as she transitions into middle school next year. We are so thankful for our friends & family who have been praying along side of us for what is best for her.
One final thought:
The day that we received the definitive diagnosis of Asperger’s for Hailey, Chris said exactly what I felt and exactly what I needed to hear from him as well. He said “Julie, Hailey is still the same kid today as she was yesterday and every day before that. This diagnosis does NOT change who she is. She is still the same loving, silly, quirky, & remarkably intelligent girl she has always been.”
He is such a wise man! I’m so glad that I’m walking this road with him. He is right. Hailey has not changed because we got a diagnosis for her. The diagnosis didn’t change her. It allowed us to get the necessary help she needs. It also has answered many of our questions that we had concerning some of her behaviors. It has made us realize that we need to be more patient and more understanding as she navigates the world around her.
One thing that we know for sure is that this diagnosis does NOT define who she is. This is just another part of her story.
Thanks for walking this road with us!