A New Chapter

Back in April 09' I was concerned about Aurora and her lack of speech. I knew that Christina had speech delay due to her seizures and thought to myself maybe it was just a hereditary trait that Aurora had picked up in the genetic sweepstakes.

I called up Christina's previous SLP therapist Leslie, who had also become a good family friend. Leslie told us to call NEIS (Nevada Early Intervention Services) and schedule an assessment. I was familiar with NEIS as Christina had gone through them for her Speech Therapy before she turned 3. We got in rather quickly for an assessment. During the assessment it was shown that Aurora's speech was a little behind it became secondary to a larger red flag. As a precaution during these assessments a person will ask you about your child. The test is called an CHAT. It is a standard criteria that most parents go through now a days with Autism being so prevalent. Aurora did not pass the assessment. I wasn't concerned at the time and knew that her speech might be the reason and in the back of my head I knew she would sail through the 2nd assessment a few months later when she was speaking more.

The next few months her speech was still behind but it started to EXPLODE when we went to Seattle in July 09' She saw large bodies of water for the first time and loved it! WaWa (Water) was everywhere she looked. We were visiting with family in Portland and Seattle so she was forced to use words to communicate with them instead of her typical gestures which we understood and complied with. (we have since learned we should have ignored them to make her speak)

Aurora had always been an anxious baby but early on in the trip really it was really magnified how attached she was to me, and how anxious she was in strange situations. The first night of our travels we were on the road. We had been driving for 6 hours which Christina and Aurora seemed to enjoy. They were both magnificent car companions. (Duncan had the privilege of flying from UT to Portland as he was at football camp when we left) We stopped in Medford OR about 11:30 at night and the screaming began. She would not sleep in a port-o-crib she would only sleep with me and her arms had to be pulled as tightly as possible around my neck. After a restful (not for me but for Aurora) sleep we headed to Portland.

Our First night in Portland was a hectic one. I was going to a Coldplay concert with my sister Jenny, and her husband Trent was taking Edric and the kids camping with his family. Jenny and I headed out to the concert. Edric got lost getting to the campsite (blame google maps) but in the end Edric and Trent found each other. Aurora some how figured out in the middle of all this that I was not around and that she was going to be sleeping in this port-o-crib thing and not her bed at home. I think that is when she snapped. She became so inconsolable that Edric called me at the concert. I missed his call but when the concert was over we talked and agreed he needed to go back to Jenny and Trent's home and wait for me.

Duncan and Christina were more than happy to stay with Trent and their cousins so Edric headed back. After a long time of getting out of the parking lot at the concert we were on the road and home. I walked into Jenny's house to a very upset baby. I picked her up and within 10 minutes had stopped crying and was back to her sweet little self. She slept in between Edric and I that night. The next day I was never from her site. Jenny and I ran a few errands and she went with us. We headed up to Seattle the day after that and as long as I was in her view she was fine. Aurora had always been attached and everyone kept saying she would outgrow it but it was just not happening. I could handle a speech delay I knew all about that but this constant companionship was starting to take it's tole on me. Don't get me wrong I love Aurora, but I felt like she was more of an extra appendage at times than a toddler.Seattle was more of the same but the language explosion she was having was extraordinary. I could not wait to get back and let Leslie know.

In August a NEIS worker came to the house for a short visit and administered the 2nd Autism test to see where Aurora was. The interview which the first time lasted at least 45 minutes lasted only 10 and I was told Aurora was fine. (I would later find out that this interview was flawed on so many levels. )

While Aurora's speech was exploding it was still behind she was not conversing, but labeling everything. She could still not communicate to us that she was hungry, thirsty, tired etc. She was also sleeping way too much. She was, and to this day still does, taking (2) 3 hour naps a day and sleeping 12 hours at night. Aurora's therapy finally began and Leslie who was her speech therapist and Tanja who was her Developmental Specialist got me in to se the NEIS pediatrician Dr. Kinman. We spent the appointment talking about Aurora and her sleep patterns and Dr. Kinman was alerted to Aurora's disinterest in all of us and what was going on. She decided that the 2nd Autism test needed to be readministered and Aurora did not pass. I sat there in shock. Not knowing what do to but get the information they gave me and absorb it I put a smile on my face and pushed whatever worries I had aside. I didn't have time to deal with the ramifications of the diagnosis, I just wanted to start Aurora on the right course of therapy and get her going in the right direction. I came home and told Edric and explained what was going on. I called Granny and Papa Haddow and started being to busy to over think it.

Dr. Kinman told us about The Mind Institute at UC Davis in West Sacra

mento and we got her enrolled in their Autism Phenome Project. A longitudinal study that is looking for genetic markers for Autism. After Christmas we scheduled our time up there Granny Haddow made arrangements to come out and watch Christina and Duncan and all was well. Aurora was doing wonderfully, and her therapy was really making a difference.

My family is very supportive and knows that we have our children's best interest at heart and have really been a beacon of strength for our family. Edric's family does not believe the diagnosis and there has been a lot of resistance to the diagnosis and to make sure that we know that this didn't come from anywhere in their genetic family line. I don't say this to criticize I say this because these are both common reactions. You will have the family members that embrace the diagnosis and do whatever they can to help and then you have the family members who resist and tell you that there is nothing wrong. Both are done out of extreme love for the child. I know that both sides of our family love Aurora with all their hearts. I think it is easier for my family because they have had to deal with my Epilepsy as a child and Christina's. My family has also helped my mother and her struggle with Auto-immune deficits over the years and know that just cause you can't always see it doesn't mean it is not there. Edric's family has such an immense love for our children that I am sure it is hard for them to see anything wrong with Aurora. It is hard enough for them to recognize Christina's epilepsy that Autism is just not in their realm of thinking since in Aurora's case is not readily apparent by her appearance.

On the outside Aurora is a beautiful 2 1/2 yr old. she is cute and does cute things and is relatively quiet. When you truly sit down with her she is still cute and quiet but you start to notice the funny little way she arranges her fingers and holds them there. She does not engage you until you force her to, she will not make eye contact with you (unless food or a favorite toy is involved) and don't even think of touching her stuff. Purple Blanket, Wall-E, Eve, etc. It is hers and hers alone. She loves Sleeping Beauty and wears a green tinkerbell dress everyday and constantly sings the song "Once Upon A Dream" from the movie. The other day I counted and she sang it over 45 times.

Singing and Dancing for Granny Haddow

In her mind she is "Princess Aurora". We have viewed Sleeping Beauty and Wall-E more times than we can count but it is what makes her happy and when you find something that can stop a melt-down in less than 2 seconds you stick with it. Aurora can work an Ipod easily and is always taking Edric's and telling him it is "Aurora's Ipod" taking the Ipod away is like taking food away from a starving dog. You might get bit.

Aurora has therapy 2x a week and we go to play group 1x a week. When Aurora turns three she will most likely go to pre-school at Christina's elementary school and she will have therapy at home also. We will continue with playgroups and other social/sensory activities that force her to interact with her peers. Aurora is extremely bright, she is very advanced in some areas, the areas that are most difficult for her are social and emotional. It wouldn't surprise me to see Aurora turn into a bookworm as she gets older instead of going out to play with friends. Well maybe one friend and that is Meadow.

Aurora and Meadow as babies

I must say through all this we have been blessed with the presence of Meadow. Meadow and Aurora were born 11 days apart and are best friends. Meadow is typically developing... and in a lot of way much more advanced than any 2 yr old I have ever met. She has been wonderful for Aurora. Meadow challenges her and loves her and is the best therapist Aurora could ever ask for. I have the wonderful job of watching Meadow 3 days a week and when Meadow is not here you see the difference in Aurora. I believe without a doubt that it was no accident these two girls were born at the same time. They are opposites in ever way you can imagine (just take a look) but if you saw them interact you would think they were sisters. In fact when I go out with them a few people (not very bright people, but a few) have asked me if they were twins. LOL

I think the other day was the first day that I really sat down and took a moment for myself in all this. It has been a few weeks since we went to the MIND Institute. We did a slew of behavioral tests, medical tests, we even did an ERP and an MRI (which they were able to get Aurora to sleep through- undrugged) It was an amazing experience and I am so glad that we could contribute. Aurora will continue to go back for various tests and MRIs over the next 8 years.

This past Friday we received the behavioral analysis from the MIND Institute. I think in the back of my mind I was hoping and praying that they would not see anything and that Aurora would not have Autism even though I knew she did. It was the second opinion that I could not dispute because of the expertise of the people giving it. I knew Dr. Kinman, Leslie and Tanja were right but I wanted them to be wrong. In the conclusion of the analysis they concurred with her previous diagnosis and there is was in black and white that Aurora was autistic. I felt a wave of emotions come over me and I wept. I wept for Aurora and even though I know how bright she is and how far she will go in life, I wept for the struggles she will have socially and have because of how the label of "Austism" is perceived. We all want the best for our children and I felt responsible for this diagnosis, just as I felt responsible for Christina's epilepsy. I know it takes two different genetic codes to make a child and that both sides of our genetics played a role in Aurora diagnosis. Even though I know all this, I still could not stop crying. I think I was letting out a ball of emotions that I had been keeping inside since her original diagnosis. I didn't want this for Aurora. I talked to my sister Jenny a bit and then my friend Leslie. I felt better and was ready to move on to the next step. I am sure I will have a few more weeping moments but I know I have people I can go to.

I think one of the things that I have realized over the past few months and I know Edric has too is that Aurora is special. Everything about Aurora was planned. Her conception, her birth (c-section) We chose to bring this little girl to Earth to be part of our family. We knew before she even came that Aurora was supposed to be here with us. On the other hand Aurora's life has not gone as planned. She is constantly throwing us curve balls and we are constantly readjusting. One thing about Aurora though, everything , and I mean everything that we love about her is a result of her Autism. Her silly fascination with Wall-E and Sleeping Beauty. Her little anxious tics, the way she holds her hands and folds her fingers. The way she only talks when necessary to really get her point across. The way she dances and sings her Sleeping Beauty song over and over. It is all those things that make Aurora into who she is and I wouldn't wish for her Autism to just go away if we were to lose those things that make Aurora into her quirky little self.

So we start this new chapter in our lives of therapy, fighting insurance companies for coverage for therapy ( and no it is not covered in that crazy Health Care bill, trust me I checked), filling out form after forms to get grants for uncovered therapy, finding patience through all the tantrums and hard days, and enjoying the sweet little girl that is smarter than just about anyone I know and helping her along her way.