Friday, November 8, 2013
Monday, October 21, 2013
Tuesday, October 8, 2013
Update
I feel like I haven't written in a while.
Updates on us all:
AVA:
School is going great!
We are still waiting to start ABA therapy for Ava. She is doing really well but there are some days that she has a really hard time. Poor cousin Asher is the recipient of many of her hard times. We are hoping the therapist can come out and help us some figure out what to do. She loves Asher and will tell you that but its like she goes into survival mode if he gets within 5 feet of her.
She seems to be speaking more but when I'm around other kids her age or younger I have to remind myself not to compare her to them. It always surprises me how much other kids can talk and communicate.
DAN:
Dan turned 27 last month :) He had a good birthday. He has a few new things to play with so that's been fun for him. He has been working really late at work. Its been kinda hard on me and Ava but we will survive. He's doing a great job at work! He is already planning his May trip to the INDY 500 :) he loves going there every year with my dad and brothers.
ME:
I've been struggling the last few weeks with some health issues and pain. Its made life a little harder and work slower but I am coming around I think. Work is busy and I enjoy it, I'm sewing every day (and my house definitely shows it). I think I need to get out of the house more (and get a bigger office)!
Its been 3 months since the doctor first told us Ava has Autism. I spend a great deal of time every day (mostly in the middle of the night) reading and trying to find new things to help. Its very much on my mind everyday. I think some friends haven't known how to respond to the news of Ava's Autism or just haven't said anything. For anyone reading this, it is very much okay to talk to me about it. It really is okay :)
Friday, September 27, 2013
Ava's FIRST School Photo
Saturday, September 21, 2013
Wednesday, September 18, 2013
What ASD is like for Ava right now
Some friends have asked us where Ava is at on the Autism Spectrum. I don't know an exact answer for anyone, she was given a mild-moderate diagnosis but we were told this could change as she gets more intervention and therapy since she had not had any yet. The do believe she would be on the milder end.
Just to give you an idea what Autism is like for Ava (since it really is very different for every child with Autism) I found this list of "symptoms" and described how each affect or do not affect Ava. This also is largely for my record to help me see how things change over time.
Children with autism typically have difficulties in:- Pretend play (Ava does great with pretend play but typically prefers pretend play by herself)
- Social interactions (yes and no, she loves kids always and adults if its on her terms and she approaches them)
- Verbal and nonverbal communication (Yes, this is something Ava has struggled with)
People with autism may:
- Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes) (Yes, Ava has sensitive hearing and she does prefer just not to wear clothes at home)
- Have unusual distress when routines are changed (Yes, and this is evident mostly out of our house and sometimes in the house when we are trying to get her to transition between activities)
- Perform repeated body movements (Not that we are aware of)
- Show unusual attachments to objects (I guess, I don't find them that unusual but her doctors say so. She has a little wash cloth that she loves and then she finds really random little objects, say a handful of water balloons and decides she needs to hold on to them for a long time and take them everywhere)
Communication problems may include:
- Cannot start or maintain a social conversation (Yes she just struggles with speech all together)
- Communicates with gestures instead of words (Yes she has done this a lot for wanting to eat and wanting things done for her)
- Develops language slowly or not at all (yes slowly)
- Does not adjust gaze to look at objects that others are looking at (she's starting to more now but has struggled with this before, but its not been a huge issue)
- Does not refer to self correctly (for example, says "you want water" when the child means "I want water") (yes she does this a lot, before preschool she never used I, me or mine, she is just starting to use those words now)
- Does not point to direct others' attention to objects (occurs in the first 14 months of life) (she pointed back then from what we remember)
- Repeats words or memorized passages, such as commercials (yes this is one of Ava's biggest things, is her Echolalia)
- Does not make friends (She loves her little friends, she may be too loving at times but she enjoys kids)
- Does not play interactive games (she tries to although she doesn't always understand them)
- Is withdrawn (not with kids, perhaps with adults)
- May not respond to eye contact or smiles, or may avoid eye contact (she avoids eye contact with adult strangers)
- May treat others as if they are objects (I wasn't sure what this meant but were told such as using a person to climb on to get something, and she sometimes does that)
- Prefers to spend time alone, rather than with others (she does prefer to play alone at home, she doesn't like Dan or I to jump in and play, she tells us "no no no" a lot when we try, but if we start a game she wants to come play with us).
- Shows a lack of empathy (her empathy is sometimes a little delayed but I don't think she lacks empathy).
- Does not startle at loud noises (She is startled by loud sounds)
- Has heightened or low senses of sight, hearing, touch, smell, or taste (heightened sense of hearing for sure)
- May find normal noises painful and hold hands over ears (yes but less than she used to)
- May withdraw from physical contact because it is overstimulating or overwhelming (yes, she is not cuddly, she never has been one to want to be affectionate. Although she does love tickles and affection on her terms. You would never find her sleeping in our bed, that would be torture to her)
- Rubs surfaces, mouths or licks objects (no)
- Seems to have a heightened or low response to pain (no)
- Doesn't imitate the actions of others (no she imitates well now at least)
- Prefers solitary or ritualistic play (yes she does both of these at home a lot)
- Shows little pretend or imaginative play (yes and no, some of her pretend play is memorized from other things but she seems imaginative)
- "Acts up" with intense tantrums (yes at times but not horribly often)
- Gets stuck on a single topic or task (perseveration) (yes she again doesn't like to switch activities so she likes what she likes and it can take some time to get her to move on, she is extremely persistent)
- Has a short attention span (yes and no, really depends on the activity)
- Has very narrow interests (not really)
- Is overactive or very passive (shes very active, we thought she had ADHD and that, along with Speech were the things we were seeing the developmental doctor for)
- Shows aggression to others or self (she has shown aggression towards me and dan before in really extreme intense situations like the day she kept hitting me after swim lessons)
- Shows a strong need for sameness (yes)
- Uses repetitive body movements (no)
Thursday, September 12, 2013
Tuesday, September 10, 2013
Cute Octopus
Our life
We have made it through 2 weeks of school! And today was the first day of the 3rd week.
Ava LOVES school, and I think things are getting a little easier there with transitions as the teacher seems less overwhelmed with miss Ava :) Last week (and this week) I have been battling a horribly nasty cold and Ava only slightly came down with a little one, so thankfully she didn't have to stay home from any school.
Last week I spent my time (between coughing and sneezing) calling Autism therapists, particularly those practicing ABA therapy. I sort of knew Autism therapy was expensive but just like with infertility I had no clue till we were in it ourselves! I naively assumed our insurance company would cover therapy but we soon found out that was far from the case.
After calling a few places we found out that the standard ABA home therapists would NOT be an option. Everyone we had talked to (doctors and otherwise) suggested that she needs at least 20 hours of therapy a week to be super effective. We can cut 9 hours out of that for what she is in school, which is down to about 11-12 hours of Aba therapy. We found out that for 1 session a week (3 hours a session) would cost $1500 a month and closer to 10 hours of therapy a week would cost $5000 a month and we are looking at about 24 months of this degree of therapy.
I cried for a few minutes, picked myself up and decided to move forward with something else. I was determined to find something else that we could afford. We had been told about a program here that has lots of backers that help subsidize their costs so that therapy is more affordable. Its not in home therapy, we would have to drive to the center but 1 session a week is $175 a month. They want her to do 4 sessions a week which still ends up being $700 a month plus another $200 for some other activities that run 2x a month. Although we do not have $900 dollars a month extra to spend, we are going to find a way to make it work. I will be working more to cover therapy and we pray its enough.
We are no longer going to be able to pursue infertility treatments. There is just no way we will be able to afford it in the next 24 months. Again this was a very hard and sad realization for me but not really a hard decision to make (if that makes sense). Regardless I will always put Ava first and that is the reality of secondary infertility. I can't put off Ava's crucial autism therapy in order to try and maybe get pregnant via infertility treatments.
Our goal is to make our little family of 3 as happy and healthy as possible. I pray that someday we will be able to try and do infertility treatments again but till then we are focusing on our little family and on helping Ava get all the help and therapy she needs.
I pray someday insurance companies see a need to cover BOTH infertility treatments & autism therapies. Its not a fun thing to have to go through these things and then not be able to afford the help needed. I could sit here and cry every night over the fact that we cannot hardly afford one of these things let alone both. I could be angry and bitter but I'm choosing not to be. I'm choosing to move forward with faith, faith both in Ava and her abilities and that this is not the end to our infertility journey. We will continue to pray and do everything else in our power to add to our family.
We appreciate the prayers said on our behalf, the on going love and support, messages, emails, & notes. Although I am very much not good at responding, I am so grateful for the support. I am so grateful for my wonderful husband, beautiful smart loving little girl and that all 3 of us are here together, honestly what else could I really ask for!
Ava LOVES school, and I think things are getting a little easier there with transitions as the teacher seems less overwhelmed with miss Ava :) Last week (and this week) I have been battling a horribly nasty cold and Ava only slightly came down with a little one, so thankfully she didn't have to stay home from any school.
After calling a few places we found out that the standard ABA home therapists would NOT be an option. Everyone we had talked to (doctors and otherwise) suggested that she needs at least 20 hours of therapy a week to be super effective. We can cut 9 hours out of that for what she is in school, which is down to about 11-12 hours of Aba therapy. We found out that for 1 session a week (3 hours a session) would cost $1500 a month and closer to 10 hours of therapy a week would cost $5000 a month and we are looking at about 24 months of this degree of therapy.
I cried for a few minutes, picked myself up and decided to move forward with something else. I was determined to find something else that we could afford. We had been told about a program here that has lots of backers that help subsidize their costs so that therapy is more affordable. Its not in home therapy, we would have to drive to the center but 1 session a week is $175 a month. They want her to do 4 sessions a week which still ends up being $700 a month plus another $200 for some other activities that run 2x a month. Although we do not have $900 dollars a month extra to spend, we are going to find a way to make it work. I will be working more to cover therapy and we pray its enough.
Our goal is to make our little family of 3 as happy and healthy as possible. I pray that someday we will be able to try and do infertility treatments again but till then we are focusing on our little family and on helping Ava get all the help and therapy she needs.
I pray someday insurance companies see a need to cover BOTH infertility treatments & autism therapies. Its not a fun thing to have to go through these things and then not be able to afford the help needed. I could sit here and cry every night over the fact that we cannot hardly afford one of these things let alone both. I could be angry and bitter but I'm choosing not to be. I'm choosing to move forward with faith, faith both in Ava and her abilities and that this is not the end to our infertility journey. We will continue to pray and do everything else in our power to add to our family.
We appreciate the prayers said on our behalf, the on going love and support, messages, emails, & notes. Although I am very much not good at responding, I am so grateful for the support. I am so grateful for my wonderful husband, beautiful smart loving little girl and that all 3 of us are here together, honestly what else could I really ask for!
Friday, August 30, 2013
First week of school and diagnosis
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| Ava and Miss Shaunell Petersen her first preschool teacher |
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| Ava's very first day of school was Tuesday 8/27/13 |
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| Ava's 2nd day of preschool |
Tuesday was Ava's first day. We drove over to Grama's house and tried to take a few photos even though Ava wasn't really feeling it. I got her over to school and took her in. She immediately went and sat down at a table with all the other kids like it was no big deal. I did a good job and didn't cry even though I had a really hard leaving the parking lot. Dan went back to pick her up that day so I didn't get to talk to her teacher about how the day went.
Wednesday I took her in and got a chance to chat with her teacher before class started. She mentioned that Ava had had a really hard time transitioning between activities but seemed to really love the other kids and gave out a few hugs and even used the bathroom when they took her which isn't always easy for Ava in new places. I came back and picked her up and her teacher said the day went a little better but was still hard, but she had done excellent in adaptive PE, better than they had expected.
Thursday was Ava's evaluation in Salt Lake with the Developmental Psychiatrist to determine if she has Autism Spectrum Disorder (ASD). It was a very long evaluation and I was so proud of Ava for how well she did even though she was being asked to do so many things that were hard for her. She acted pretty much true to how she normally is and we were able to talk to the doctor for at least an hour before they started testing. They did some general testing that they had done before at the school district to gauge her cognitive level. She said she did great and had a good IQ, so we know she is cognitively fine. She however did diagnose her with ASD in the mild-moderate range. We discussed treatment options in addition to her being in school. She brought up the fact that Utah is one of the few states now that has 0 mandate for autism benefit coverage and autism therapy is very expensive.
We discovered today that for Ava to receive the amount of therapy that her doctor wanted to see would cost us 4000$ a month (or close to 50,000 for a year). We were to say the least EXTREMELY shocked. I cried for a few minutes alone in my bathroom after speaking to a few services realizing that we cannot afford any of them even on their minimum basis. I felt somewhat defeated as the doctor had stressed so heavily how important ABA therapy is and how important it is for Ava's future to start it immediately.
We have a few more avenues we are going to try (a few suggested moving to a different state!) but I'm praying the right situation will come to be and that we will be able to get Ava the therapy she needs to succeed. I'm just trying to have faith and learn as much as possible in the mean time!
Today was her 3rd day of school. I took her in and dropped her off and she immediately recognized her name tag and picked up and took it to her seat. I was so excited to see that! They were doing painting so I helped her get situated and get her paint shirt on. She just seems so at home in school! At the end of the day I got back a few minutes early and they were walking back to the classroom after an activity. My eyes scanned the little crowd of 3/4 year olds for Ava and there at the very end of the line was little miss Ava holding hands with a cute little blonde boy! I giggled a little and sent Dan a text. When I walked in Ava was so excited to see me! I stayed after again to tell her teacher that we did get a diagnosis and that I would bring in all the papers once I got them from the doctor. All the while Ava had lined herself up in the bus line with her "friends." Her teacher told me that today went much better than the previous 2 days but she was still struggling with a few things but she felt like in a few weeks she will have their routine down.
When getting her buckled into her car seat in the car I asked Ava how her day was. She said "she fell down" and I then asked her if she fell down or if another girl fell down and she responded "she was sad" and so I asked again was she sad or her friend. "no no, friend, she was sad" and so I asked if her friend was okay and she said "yes she's very happy" I was so happy to hear her trying to tell me about her day and something she remembered! I love this girl more than words can ever ever ever say. For me Autism isn't the end of the world, its not exactly what I expected or anticipated for Ava but I know we can make it through and that Ava will do wonderfully!
Friday, August 23, 2013
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.
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.
Almost 3 1/2
Cannot believe Ava will be 3 1/2 in just 3 weeks!! Last night she had a fever of 103.5 so we called the doctor and took her in today to get checked out. She measured in at 39 pounds (91%) and 42 inches (99%)
Her tonsils were red and swollen as usual. She reminded us that we still need to get them out. We are hoping to wait till shes a little older and bigger before we do the surgery. We have to have a few other tests run to see if she has a UTI or anything of the sort.
She also gave us some info and referrals for some help with Ava's developmental delays. I don't know if I've posted it on the blog that she's starting preschool next week. She will be receiving speech, physical and occupational therapy while there. She is behind in gross motor, fine motor, speech and a few other areas. The only area she was not behind on was cognitive.
She's also being evaluated by the developmental pediatricians at the Utah State Health Department for her delays to determine if its just delay or if she may have Autism. We aren't entirely sure which way it will go. At the time we first met with the doctors on July 3rd her primary form of speech was something called Echolalia and now she has added some of her own formed speech in but not a ton. So I guess we will see.
Her tonsils were red and swollen as usual. She reminded us that we still need to get them out. We are hoping to wait till shes a little older and bigger before we do the surgery. We have to have a few other tests run to see if she has a UTI or anything of the sort.
She's also being evaluated by the developmental pediatricians at the Utah State Health Department for her delays to determine if its just delay or if she may have Autism. We aren't entirely sure which way it will go. At the time we first met with the doctors on July 3rd her primary form of speech was something called Echolalia and now she has added some of her own formed speech in but not a ton. So I guess we will see.
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