Some of you have asked for an explanation of how Kate received her diagnosis. Some worried parents have asked about the signs that led us to ask questions. I am happy to share our story with the disclaimer that every single child develops differently. So please, do not panic if your child is doing a little toe-walking or likes to spin the tires on toy cars. If you are truly worried then please make an appointment with your GP and ask questions. With that said, I'll tell our story. Kate was born eleven days late in May of 2010. We took her home from the hospital the same day with permission (since as second time parents we were pros) and started our life with her. I remember when she was a few weeks old we received a call from her doctor that she had tested positive for hypothyroidism. Grace was scheduled for an echo cardiogram the same week. It was a rough week but in the end the test turned out to be a false positive and Grace's echo results were fine. As an infant, Kate was collicky, much like her sister was, for about three months. Also, like her sister, she did not sleep through the night until she was about one year old. All pretty typical I think. This next part is really difficult to say. I really do not want the tone of this next thought to be taken wrong. Please know that I have always and will always adore Kate to the depths of my soul. She is our sweet Baby Kate. But, if I am being honest, then I have to admit that I was struggling to connect with Kate when she was an infant. As a mom, that is so hard to write. Looking back I can see that Kate was struggling to connect with us. Which is the cruelest part of autism. A lot of people will swear that their child changed after their eighteen month vacinations. I don't deny that some children with autism could be vacinne injured but I do not believe that it the case with our Kate. I believe there are many different kinds of autism. I truly believe that Kate was born with hers. We choose a biomedical approach to her treatment because we believe that environmental factors as well as genetic factors contribute to Kate's symptoms but the core of how her brain works is something I could sense immediatley. Does that make sense? I certainly did not suspect autism at any point in her first year. I just knew something was different. Right around her first birthday we noticed that Kate was not making the sounds that were typical for children that age. Kate's aunt is a speech pathologist and was so kind in helping us get Kate started in speech and helped us ultimately discover that Kate's ear drums were not functioning properly. I was so relieved to hear this because I thought this must be the reason behind that nagging feeling that something wasn't right. Kate would never turn around when you called her name. It was very hard to get her attention and even harder to hold it. After visiting the audiologist we discovered that Kate's hearing was very weak. It broke my heart to hear that she could only hear at a certain decibel level. It was described to me like this: she could likely hear my husbands voice but not my own. I felt gutted. Poor baby Kate. But, we had a plan now, we were going to get tubes in Kate's ears and she would be able to hear and all would be well. We booked her surgery and waiting impatiently for it to happen. Kate had her surgery and her head began to turn a little more quickly when she heard a loud noise but she still was not really responding to her name. Now, the autism thing was starting to creep into my thoughts. I would quickly push it away. I work every single day with kids with autism. Surely, I would know if my own baby had it. Wouldn't I? Here is when I knew. I have not told many people this but it was during a trip to Disney World the March before Kate turned two. Talk about sensory overload for a little girl with autism! Looking back she handled it like a champ and loved mostly every minute of it. We were preparing the girls for a visit to Bibbity Bobbity Boutique. I dressed Grace in her Princess Tiana Dress and she floated around the hotel room vibrating with excitement. Next, I tried to get Kate dressed. We had purchased her a Princess Jasmine costume. When I tried to put it on her she reacted as if it was like fire on her skin. She had a complete meltdown. At that moment I knew. I was able to bury it deep for a few more weeks, but I knew. I knew a little bit about sensory issues and I knew what this meant for Kate. I cried in the hotel room and hugged Kate and dressed her in her regular clothes. Off we went. (See the photo gallery below for pictures of our trip. You'll see that Kate was a happy girl.) When we got home from Disney World Kate's aunt came over and spent some time working with Kate on her speech goals. It was a Sunday afternoon and it's burned into my memory because it was that day that she came out and told me that Kate had 'the soft signs for autism'. Can you imagine how hard that was for her to say? I have never really properly thanked her for having the courage to say that to me. She has been amazing to Kate and our whole family and we are so grateful that we have her in our lives. After she said this, things moved pretty quickly. We were already on the waiting list to see the developmental paedatrician and Kate was already enrolled in speech. The next step was to meet with the paedatrician and speech pathologist so they could observe Kate. It was July 12, 2012, Gramma's birthday. We headed up to the hospital in the afternoon and were preparing to go Gramma's birthday dinner after we left. The assessment took about two hours. Mostly, they asked us questions and watched Kate play. They asked us questions like: "Does she toe walk? I said, "I don't think so, maybe a little." (I believed myself at the time because I had a level of denial going on but the truth was she was toe-walking a lot at this point.) They asked if she pointed at things and looked for our reactions; she did not. They asked if she had an interactive attention span and again she did not. They asked many more questions and I tried to craft my answers so that they could not nail down a diagnosis. I had done multiple internet checklists for autism at this point. Kate was passing with flying colours every time. Even after answering these questions and watching Kate struggle to engage with the doctor and the speech pathologist, I still had hope that she would not receive the diagnosis. I remember I kept reminding them that her hearing was not good. I can see now I was desperately trying to make them see another reason for Kate's behaviour and delays in development. I imagine they see two types of people in their office: those in denial of the diagnosis and those begging for it to help answer some questions. After they were done observing Kate, they left the room while Alex and I waited and sat on the floor playing with Kate. We knew they were coming back with an answer. We still had hope, until the very last minute when the doctor walked into the room, sat down and said: "Kate has autism spectrum disorder." I have no idea what she said after that. I remember signing lots of paperwork and I remember how incredibly kind she was but my mind was stuck on that sentence. I couldn't move past it while we were in the office. In fact, I think it took me a couple of days. We took Kate and walked to the car. We drove to Gramma's house for her birthday party. I held it together a little bit until I walked in and saw my mom and my brother. Then I cried for a little while. Then I remembered that Kate was the exact same baby girl we walked into the hospital with when we walked out. The diagnosis did not change her. She was making huge gains in her ability to communicate with us. And with floor time, speech and occupational therapy, we were connecting with Kate like we'd always wanted. She was still our awesome little girl. I am not going to pretend it's been easy. We have only been dealing with this for six months. We know we have a lot to learn. The emails and comments we are receiving through this blog have been priceless to us. The sweet comments and the suggestions are helping us make connections that are going to change things for kids like Kate and their families. If there is anyone else out there reading this that is willing to share their story, I would love to hear it. Leave your story as a comment or if you would rather send it as contact form and it will be for my eyes only. If it too private I understand. I won't write her name here but I really wrote this post due to a request I received in a contact form from a mom with a little girl around the same age as Kate. I have been trying to email her back but it keeps bouncing back to me. Please write me again! You know who you are. I do tend to get more private messages than comments on here and I understand that these things are very personal.
p.s. We had 327 hits two days ago. Even with Gramma clicking on the site a few hundred times a day that still means we have lots of readers. Thank you so much. I think we might be building a little Autism Army.
Happy Mail to:
27 Wellington Row
Saint John, NB
Click below for info on getting a custom illustration of your pet, by yours truly!
Grace and Kate's mom. (Shanell)