When life hands you lemons you..

suck it up and move on.

A few weeks ago I posted about how we suffered a blow to Avery's therapy team here. She lost her OT she's had from the start, she maxed out of the therapy for our insurance and we lost the extra income that would have been helpful to pay for out of pocket therapy for the rest of the year.

I went to work ASAP and was able to find an interim therapy solution at Easters Seals for the time she had a break from the summer to fall session of school. So far so good. She seems to not have skipped a beat with the therapists much to my surprise. She has attended to activities with the therapist and even told her "all done" when done swinging which is huge. So for an interim band aid it seems to be working.

I want to get her on the waiting list for the therapy place I go to for my physical therapy for my foot. 
While at therapy today I saw the PT who worked with my oldest for about a year while she was in our states Early Intervention program. She also worked with Avery for a short time from 5-9 months ( i think I'm fuzzy about that time period).  She really adored our girls and they were great with her.

When I talked to her today she was really shocked to know that Avery has Autism. She kept saying, "but she gave me good eye contact", "she wasn't withdrawn", etc. I mean I am not sure how much she could have been clued into with her at that age because she really didn't start to show major signs until she was about 2 and the sensory issues didn't explode until she was in therapy. I mean there were small things to start with but nothing big during the first year. It's all the developmental milestone's in the second year that she didn't hit.

I saw a few issues the first year but did anyone see the big issues the first year?

Like when I told the DR who delivered her that she has Autism I kinda of felt bad telling her about Avery's situation. It's not like she did it to her or she could have noticed anything to cut it off at the pass. I mean it is what it is. She has Autism. In the grand scheme of things she's lucky. No physical health issues, she's not in a wheelchair, she doesn't have seizures. When she starts school again in a few weeks she'll be getting more services, more attention and God willing things will blossom for her.

I'm trying to keep things in perspective these days. No matter how I think our life sucks, I'm pretty sure someone else has it worse off and is envious or wistful of the life we have. I don't mean that in a cocky way either. When I have a moment and I talk to my BF and we are both having a bad day, and we both go "I wonder what it would be like to have "normal" kids" you know a life that does not revolve around a therapy schedule we remind ourselves of these things.  I'm just counting my blessings. Which is something I sometimes forget to do and need to do more of.

I hate Autism.

I haven't gotten to the point where I can embrace it for all that it is.

It basically fucking blows.

My oldest daughter doesn't get a normal playmate for a sister. In fact though she's a great kid, it's like she's the third parent in our house and not by choice.

Mom!- Avery's spilling her milk on the couch again.
Mom!- Avery's got the remote for the tv.
Mom!-Avery's doing something she's not suppose to be doing ______!

I can't be in the same room as them all the time and though our house is like a deluxe apartment it's that small I still can't have my eyes on her at all times so I am grateful that my oldest see's things that are wrong and reacts and let's me know.

Maybe that's part of being a normal big sister but she never gets to say:

Mom!- Avery just shared her animals with me!
Mom!- Avery just gave me a big hug and kiss!
Mom!- Avery just told me she loved me!

She doesn't do any of those things with me either honey.  I'm sorry. I wish she could. I'm sorry you told me last week that Avery is your best friend because she can't express that back to you nor would she know what a best friend or even a friend is.

I feel bad for her. She's missing out on a normal childhood. I mean really what is normal these days though? I see kids who get to participate in classes together, take swim lessons together or just play normally together. They get to share memories together.

What does my oldest get?
So and so therapist came today to play with my sister again.
Today my sister was having a very bad day and we had to pick her up from school early.
Today Avery is still doing that thing where she's spitting the milk out of her mouth after swirling it around for a bit and making a big mess on her shirt and the couch.

While I worry every day about how Avery's placement with the school district will go (pray, she goes to a special school!). I worry every day about the affect on our oldest. When I am trying to deal with an Avery melt down sometimes the oldest needs attention and well she just kinda of has to wait it out. Which have you ever met a patient 5 year old? Yeah didn't think so.

Obviously our lives don't look like a spread in Parents magazine. I would imagine that most people's lives don't.  Which is probably why I stopped getting the magazine a few years back. During the month of April if you live under a rock it's Autism Awareness month. And Parent's magazine did nothing in the print magazine. Though once they found out that the Autism Mom community was quite enraged about it they decided to put some articles online including this one that get's dissected here: Butler Way: Parent's Magazine Fail For Autism.  They could have done something besides the normal signs there might be something wrong type of article because really all I would have done to follow up on that is comment, "Trust your instinct! If something is off seek out specialists to either qualm your fears or verify your child's needs." Because once someone reads "those signs" articles they start to ask their friends with normal kids who say, "Oh they'll talk when they want to, Every kid develops differently it's ok if they don't start walking to later, Hey that hitting  of the head oh that's such a boy thing don't worry about it! or the more famous one is Boys will be Boys!"

What I am really grateful for though is that my oldest had her own issues to begin with. She had a global developmental delay. So she needed help in all areas but other than that she's pretty much a rock star kid. She'll be going to normal Kindergarten in the fall and still get some services. BUT if it wasn't for me going "something is not right, why can't she say hot dog" and asking her pediatrician (who respected me as a parent and said, let's get her evaluated instead of brushing me off). If it wasn't for me already being aware from our first daughters issues we might not have gotten as early of a diagnosis of Autism with Avery as we did.

Today I was asked what Avery's future prognosis is. I couldn't answer the person. It's to early to know if she'll mainstream or heck even what early childhood preschool program she'll be entering into this summer. I basically just shrugged when all I really wanted to say, "Fuck if I know."