Ava's FIRST School Photo

Ava has finished 5 weeks of school. I can't begin to explain how much school has already helped her. How much of a change we have seen in our little girl. She LOVES school, she thrives there, she adores her teachers and her friends!! 5 weeks ago I was terrified and didn't know how I would even make it a day without her constantly by my side, but seeing how happy school makes her brings me so much happiness as well!

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)

The symptoms may vary from moderate to severe.
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)

Social interaction:

• 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).

Response to sensory information:

• 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)

Play:

• 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)

Behaviors:

• "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)

3 1/2 years old!!!

 

Cute Octopus

What happens when mom is browsing embroidery designs on etsy. Ava finds one she loves and wants to talk to it :)

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!