Maybe Autism

Where do I start?

Ava's had ear infections since she was 4 months old or so. She has had them constantly till she got her first set of tubes put in around 18 months. Even with those tubes she got sick often. We noticed our very easy baby turning into a toddler and chalked up some of her behavior problems up to being 2 even though I look now and realize she was having sensory processing issues from just before her 2nd birthday at least.

We found out last November that her tubes had fallen out (she was just over 2 1/2) and that she was not passing any hearing tests.  She also wasn't talking a ton or very clearly at this point so our doctors reassured us that it was because she couldn't hear well.

They had kids on the move come to our house for an evaluation to see if she qualified for early intervention. She was measuring mild to moderate but not enough to qualify at that time for services.  We ended up getting her tubes put back in and her adenoids out the very beginning of February.  It was then that we decided that we would move forward with getting an ABR hearing test where she would be sedated in the hospital so they could test her full range of hearing to see if she had any hearing damage from the repeated infections.

She was speaking more between February and April when the test was done but not a ton and still wasn't communicating with us what she wanted or needed. I was sure the test would come back as she had hearing loss. Well after a very very long day at the hospital we found out she had no hearing damage or loss. I was very surprised by this because at this point she was still struggling just to respond to her name or look at anyone when they were talking to her.  We had people tell us how rude that was and that she should respond to them when they are talking to her.

By spring time we had tried a few different activities (dance, little gym, library lap time) with Ava and each time we did these activities I couldn't fully gauge how old the other children were but I noticed Ava doesn't function like other kids and even the kids that looked younger than her could participate while Ava struggled to even be in the room. I was starting to feel really guilty, like what have I not done with her to prepare her for group settings with other kids? is it because we can't have more kids? is she suffering from not having a sibling? would she be doing better if she had been around other kids more from the start? A million questions.

In this time attending church had become impossible. Ava could not sit for church and I could tell her nursery leaders were not enjoying having her in class when we would try and take her.. as well as the day care ladies at the gym. They would constantly tell me she won't listen, she won't sit down, she acts like she can't understand what we are saying. I'm at a loss because at home we do pretty well. When we go out in crowded situations she gets way overstimulated (not that I realized that's what it was called at the time) but she was struggling to function in noisy chaotic environments.

Move onto May when we went down to visit my family in Arizona. We had a few family members and other people point out that Ava was different from other 3 year old. And at this point I wanted nothing to do with anyone pointing out that there may be anything wrong with Ava. Within a week of being home from Arizona I knew myself finally we needed to seek out help. At Ava's 3 year well check in March our doctor had referred us to a developmental pediatrician but I had wanted to have her hearing test done first because I believed all her issues would be solved by the answer of "hearing loss" but when that came back as not the case and I sat with that fact for a month or 2 before it finally started to settle in.

We took Ava to swim lessons in the beginning of June and thought she would LOVE it since she loves to swim.  We signed her up for the youngest class with other 2 and 3 year olds.  The first day we went we found out she was the oldest in the class. There were about 8 different swim lesson classes going on in one small area. Ava was not super excited about her teacher and so I stayed with her for a few minutes hoping she would warm up. The other kids in the class were also leery but warmed up and entered the water with the teacher. Ava still couldn't function. At this point she was running up and down the pool deck screaming. I didn't know what to do. I didn't want to give up on lessons I was hoping she would calm down and be able to participate. They asked me to finally leave thinking that would help. I made it out of the locker room and up the stairs to only look down from the observation deck and see her teacher pointing at the locker room. I ran back down stairs to find that Ava bawling and holding hands with one of the life guards. I picked her up and took her back to the pool for the last few minutes. Her teacher was very unhappy with us at this point.

We came back the next day and we started the same game. This time I stood in the locker room for a few minutes before venturing upstairs. But once again as soon as I got up there I looked down and there was no Ava to be seen... this time no one followed Ava into the locker room so she was running around the locker room wet, cold and screaming her head off. When I got back down there were a bunch of elderly ladies trying to figure out what to do with her.  She wouldn't even come to me at this point. She wouldn't make eye contact with me or even acknowledge that I was there. It completely broke my heart to see her in so much distress.  I finally got a hold of her and she immediately started hitting me in the face, I just held her, held back my tears and told her over and over again how much I loved her. One of the elderly ladies stopped me and informed me that I obviously have not developed enough trust with my daughter. I just walked away. We went and sat somewhere quite and while she was still hitting me I simply held her wrapped in her towel and tried to calm her down.

I knew then that something was wrong. In this same week we had hung out with our friends and their daughter, who was nearly 2, and I noticed that their daughter was able to communicate more clearly her wants and needs being 16 months younger than Ava at just over 3. I thought at this point maybe she has attention deficit disorder or something of the sort.  So we decided to make the appointment with the developmental pediatrician that we had been referred to a few months earlier.  We had to wait a few weeks and on July 3rd we finally had our appointment.  Ava struggled with the nurses trying to get her stats and that wasn't unusual for her.  We met with a wonderful doctor who spoke with us for what feels like an hour or two. We went over all of Ava's medical history and our history and medical histories of our family members.

During this appointment they were also observing Ava's behavior.  She was acting completely like her usual self and nothing seemed out of the ordinary to me.  We talked about some of Ava's sensory processing issues that I had noticed a long time ago and learned more about (like her covering her ears to noises or anticipation of loud noises) and her attention issues, her comprehension and her speech.

The doctor looked at me and said "I don't know if anyone has ever told you this, but I'm pretty sure Ava has Autism" I looked at her and my eyes started welling up with tears.  I would be lying to myself and others if I said I hadn't had that thought myself (or something at least similar to that thought) but I had never said it out loud, even to Dan. I'm so grateful Dan was there with me.  We talked more and she explained what she would like to see happen and the next steps of testing and evaluation.

I left again with a million questions and very few answers.  I was pretty upset to begin with and very much in disbelief.  I didn't think it was possible. How could she have autism? She says so many words? She loves other people and kids, I thought there needed to be a huge social issue here to be autism? The more reading I did the more I learned about Autism and the wide range and spectrum that it really is. It was at that appointment that we learned that Ava's primary form of speech is delayed (and sometimes immediate) echolalia. Which is memorized speech. She has an exceptional talent for memorizing things, songs, shows, daily speech that Dan and I use. But she wasn't able to form her own sentences well enough to be able to communicate her wants or needs.

The doctor suggested that we go see the school district and get her evaluated for the special education preschool. I was convinced that she wouldn't qualify.  Kids on the move had told us "she knows too many words" to qualify for them or the school district. But back then we didn't know that those words and the use of them were echolalia.

I called the district and got her set up for her evaluation and my friend Becca helped me figure out that I needed her evaluated for more than just speech and talked me through the process. So grateful to have a friend who works in special education with our district!

The day of her evaluation with the school district came and I nervously sat and watched while she was tested on cognitive, speech, fine motor, gross motor and I did some written evaluations of her.  She did great with the first teacher evaluating her for cognitive.  She said she did very much notice Ava's echolalia and I mentioned that we were in the process of possibly being diagnosed with Autism. She nodded her head and went on with the test.  Next the fine motor tester came in. Ava adored him and tried to do the things he asked. I completely thought she was doing well but turns out not well enough for her age.

Next was speech. This was the most difficult one for Ava. The tester came in along with the psychologist. She was not happy with this testing and after about 5 minutes she broke down and went to hide under a chair for the rest of the evaluation which is not uncommon for Ava when she gets overwhelmed. This of course contributed in her speech testing coming back as low as possible.

Lastly they did gross motor testing and she met with 2 people for that. She really enjoyed kicking and throwing balls and walking on their balance beam.  And of course I look at her and just see her as a normal little 3 year old but once again she tested very low for gross motor.

So when we went over her scores with the psychologist I was horribly confused. She told me that they were calling it "significant developmental delay" until we otherwise get her autism diagnosis. I kid you not I was starring at them like "really?" I was pretty surprised. I immediately asked if they thought Ava would then be in preschool and they told us they couldn't tell us but we would have a meeting the next week to discuss it. I was horribly anxious because I was thinking, everyone is telling me she is horribly behind, so lets do something about this! Get us some help!

The week went by and Dan and I went to the IEP meeting. Dan looked about as bewildered as I had the week before. He wasn't entirely ready for everything they listed out about Ava. They let us know that she would be in preschool 3 days a week and receive a majority of her therapy in speech and then some therapy in fine and gross motor as well. We signed off and were sent home with a very large packet of papers about their goals for Ava this school year.  I was very unready to know that Ava would be in school and this wasn't something that we could "pull her out of because she's not ready" like everything else we have done. But at the same time I knew she would be getting lots of help and love from people who understood her.

By this time it was the end of July and we had only told a few people what had been going on. I was still pretty confused and wondering what this meant for us, and majorly what this meant for Ava. I got some mixed reactions from family and friends as we shared this news, some were surprised, some were not surprised in the slightest, all were very supportive. I didn't want to talk about this openly until I got my emotions about it better in check.

Its been almost 2 months now since we heard the word Autism and I'm much more at peace with it now. I've realized that the word or diagnosis of Autism or even Developmental Delay doesn't change Ava in the slightest. She's still perfect! She's funny, smart, beautiful, loving, kind... those are all still Ava. I'm fully aware of the grand scheme of things, especially thanks to our own dealings with infertility, that for us this is something we can deal and cope with and help Ava with.

The only thing any sort of diagnosis changes is our ability to get Ava services to help make her life a little easier. To help her be able to communicate better and be understood. To help her manage in situations that may cause her stress. There have been many a night where Ava has laid down in bed with tears welling up in her eyes as she tries so hard to tell us what it is she needs and can't. It breaks my heart every single time.

In the last 2 months we have seen improvements in Ava's language and even in her ability to transition from activities. Sometimes its still very hard but sometimes its not.  We could have just as easily ignored her delays and pushed forward and continued to get the same reaction from people and force Ava into situations that were too difficult for her to process.  I'm grateful for the lords hand in all things and that although it may have taken me a little longer to see it, that I did see it in time to get Ava into school. I pray that this year Ava grows and develops and that I grow and develop. That I am able to be apart from her for the 10 hours a week that school will take up without having any extreme panic attacks, as if it were up to me I'd never be apart from her ever.

She's our one and only and may always be our one and only. And as some have asked, no this does not change the fact that we are still trying to have another baby (ies). We are still going to move forward with fertility treatments, and pray that we can add to our family and make Ava a big sister someday (soon)! She loves babies and we pray everyday that we can bring more children into our home.