This Week's Super Moments

I just thought I'd take a quick moments and share some Zoey moments/accomplishments from the week:

1) The other day when the supports coordinator came to the house, Zoey mimicked me by shaking his hand and saying "nice to meet you". Normally she hides from new people or tells them "no" if they try to talk to her. Later when my sister came over, Zoey ran up to her, shook her hand, and said "nice to meet you". So obviously we need to work on when that social interaction is needed. LOL!

2) On the way to JAM on Wednesday, Zoey was able to tell me all of her friends' names from JAM. She needed a little prompting on the one little girl. She was also very adamant that she include herself in the list. We are continuing to reinforce this since it's one of her JAM goals.

3) She was able to correctly tell me 3 things she did in JAM and then she was able to tell Scott several hours after it happened. This is a pretty big accomplishment for her. Questions are very difficult for her. That was one of the big things that made me certain she had ASD even when everyone else was saying she was fine. Carrying on a conversation with Zoey and having her tell you about her day has really never happened until this week. So that's pretty awesome. Still a LONG ways to go in that areas, but big step in the right direction.

4) Over the past couple of weeks Zoey has really started to show more interest in other kids and has been hugging them when she gets to daycare and when she leaves. On Monday at JAM, she got excited and said another child's name when he got there. It's really giving me hope that with work, she will be able to have age appropriate friendships.

This week Baby had to come to the Farmer's Market with us. Of course she needed buckled up as well

Negativity is Contagious

Negativity is contagious and I am trying really hard not to catch it. However, I feel that at times there is a fine line between the normal need to vent and just having a negative attitude. For instance, I take Zoey to her speech group twice a week, and at first I was really happy to have other moms to talk to who were dealing with the same things I am. However, I find it hard to keep a balance between venting and maintaining a positive attitude. Is raising a child with Autism a walk in the park? No! But it's also not the end of the world, and it does no good to act like it is

So where does the line between venting and just having a negative attitude get drawn?

I can't change the fact that there are difficulties that we face on a daily basis. There are days were I just want to scream, and I find someone to vent to (so I understand that need). However, I'm trying to maintain a positive attitude and focus on the good things. I'm hoping that I can find a way to spread a more positive attitude to my follow moms without coming across as a know it all or judgmental (cuz there's a fine line there as well).

Feelings Overwhelmed by Decisions

As a parent I always want to do what is best for my child. I'd like to believe that is true for most parents. However, I feel like since Zoey was diagnosed, I have been under even more pressure to do what is best for her. I acknowledge that this pressure is completely self-imposed, but non-the-less it is there.

There are so many different decisions Scott and I need to make that it is all very overwhelming at times. Right now I am mainly focused on two main decisions: 1) where to send Zoey to school, and 2) what type of treatment to get her involved in. These decisions seem to get more complicated whenever I talk to someone else about them. For instance, Zoey had her first session of group speech on Monday and one of the other moms and I started talking. She was asking what we were doing in regards to school and ABA therapy and sharing her feelings of uncertainty. While this mom wasn't trying to persuade me in any particular direction (we were both equally unsure), I do feel that my thoughts on both of the issues started to change a little bit and some of the thoughts I had before I started to second guess. So then I go home and I start doing research (mainly regarding ABA treatment) and my mind starts to go in a totally different direction.

Tuesday I had a visit to one of the special Autism schools that were recommended to us by the psychologist who did Zoey's evaluation. She didn't actually recommend that we send her to a special school, she just let us know that it is an option. Anyhow, I made an appointment to tour one that is close by. There are two main issues that I keep coming back to. The first is cost. If we decide to send Zoey to the special needs preschool through our district it is completely free. The Autism school costs $20,000 for part time and $28,000 for full time. There is an Autism Scholarship that covers $20,000. Finding out that cost difference between full and part time kind of threw a wrench in my thinking because the preschool through our district is part time, so technically both part time programs are free to us.Actually that's not completely true because the Autism school provides speech therapy, but it is not included in tuition, so it would cost extra.  So then it comes down to looking at what program is right for Zoey. Honestly I have no idea. I think if she were lower functioning I would be leaning more towards putting her in the Autism school. However, the fact that she is pretty high functioning makes me more hesitant. I think Scott and I are on the same page that when Kindergarten comes around we want her to mainstreamed as much as possible, so we would not be planning on keeping her at the special Autism school anyhow. On the other hand, I wonder if I would be giving her a better head start if we enrolled her in that school for her two years of preschool. However, then when it came to transition her to kindergarten the school district wouldn't know her so her IEP wouldn't be an individualized as it could be. See how all of these thoughts just cancel each other out and drive me crazy? I wish someone could just tell me "This is what is going to for sure be the best choice for Zoey". Sadly, no one can do that, so I just have to guess.

Now in terms of her treatment options, I had been pretty settled on doing ABA treatment with her. I'm not exactly thrilled with the way it works here in Ohio. However, I'm starting to think that most states work the same way. However, I work in Pennsylvania, which I like to say has a messed up mental health system, but for kids with Autism it seems to be a pretty good system (once you fight to get the managed care company to approve the hours). They have what are called Behavioral Specialist Consultants and Therapeutic Staff Support workers, who go to the home, school, or community to work with the children. The TSS workers are employed by an agency and supervised directly by the BSC. Here in Ohio, they offer the same kind of program, but the difference is that the agency employs the BSC equivalent, but you have to find a person to do the actual therapy (the TSS part), pay them out of pocket (not covered by insurance or county funding), and then the agency will train them. I have a really hard time with that because the random person I hire has no background in psychology and I can't see the training provided by the agencies as being all that comprehensive. There's also the fact that I'm not really sure what behaviors I would have them work with Zoey on. Her behaviors are really pretty good most of the time. It's mainly social skills that I am concerned about. I think we do a pretty good job of handling the minor outbursts we have.

During Wednesday's JAM session, we started talking about county funding and what is and isn't covered. I haven't met with our supports coordinator yet and the one mom had just met with hers, so she was sharing with me what she found out at her meeting. However, we live in different counties, so there are differences because of that. It's all so complicated. This service is covered, but only under these circumstances. I think I might pull my hair out before the month is over!!!

Cuz a blog post isn't complete without a picture of Zo :)

The Things We Take for Granted

Prior to Zoey turning 3, I don't think I every really thought about whether or not she would have friends. I just kind of took for granted that she would. Obviously I worried about things like bullies and already we have had to deal with that slightly. Really it was Scott who observed another little girl at the playground shun Zoey because she couldn't understand Zoey when Zoey told her what her name was. This little girl told the other kids to run from Zoey. Thankfully, at this point Zoey didn't really understand or care. But as she gets older she will encounter those situations and she will care, and as parents Scott and I will try to help her through them. Those are the situations I was expecting.

What I wasn't expecting ... What I took for granted was that Zoey would have connections with people outside of her family.  Scott and I would joke at times about how she was doomed socially due to the fact that both of us are socially awkward and have social anxiety. However, both Scott and I had friends growing up. We had people that we were close too. We had connections. 

Ever since Zoey turned 3 and I really started worrying about an Autism diagnosis, I have been hypersensitive to her social interactions, or lack there of. I mostly avoiding asking her daycare about it because I think a part of me knew the answer, but then when I finally did start to ask more, I was devastated by the answer. My sweet little girl, who has a personality that most people just fall in love with, spent the majority of her time in daycare by herself. She didn't seem interested in playing with the other kids. The picture that came into my mind was of Zoey off in a corner somewhere all alone, while the rest of the kids ran around having fun.

That is why these past two days have been so great. Yesterday when we were at COSI, Zoey made a friend. I had to walk her through the social niceties of asking to play and introducing herself, but Zoey was interested in playing with this little girl and she was able to engage in imaginary play with this girl. Then today when I picked her up from daycare, she was sitting at the table with the rest of the kids and they were all playing a guessing game with one of the teachers. Zoey saw me, ran up to me, and then immediately asked to keep playing. I let her and while she didn't seem to follow along with the guessing part of the game (I think because she had her back to where the teacher was), she was hiding her eyes and counting with the rest of the kids. When they transitioned to Simon Says, Zoey excitedly jumped up and down with two other little girls. When I finally got Zoey to grab her bag and head out the door, she said goodbye to everyone. Another little girl asked her for a hug and Zoey happily gave her one. That little scene melted my heart. Zoey had a connection, even if it was just a brief one, with a kid around her age who wasn't her cousin. It gave me hope that Zoey will have those things that I used to take for granted ... a meaningful relationship with a friend.

I know the road will be rough. I know that I will have to overcome some of my own social anxieties in order to help Zoey down this path. But I also know that there is a part of Zoey that wants that social connection and that she is capable of it. That means the world to me.

Zoey with her friend at COSI

Introduction

I decided to start this blog as a kind of online journal about my thoughts, feelings, and experiences as I journey down the path of raising a child with Autism. Zoey was diagnosed with Autism (High Functioning) in May and there have been several times that I have felt like writing about different things we have encountered, but I didn't really feel like our family blog was the right place to do that. I want our family blog to be about the fun adventures we have, and while I'm sure many of the Autism related adventures we have with Zoey will be fun, I also realize that many of them will be stressful and frustrating and I will need a place to vent. I am a very private person in terms of reaching out to people when I am going through a hard time or just need to talk, and writing is my way of staying sane and getting those thoughts and feelings out.

If you are new to the story of Zoey, you can check out my post on our family blog about her diagnosis. 

In terms of the title for this blog, I was trying to come up with something to highlight the thought process Scott and I have adopted regarding Zoey's Autism. As noted in my blog post about her diagnosis, we are viewing Zoey's diagnosis as her super power - hence Super Zoey. I gave myself the title of Ordinary Mom for a couple of reasons: 1) I do not have Zoey's super powers and will never know what it's like to be her, 2) As a psychologist, it seems that people think that I know how to help Zoey, but the fact of the matter is, I have no freaking clue what I'm doing. I am just an ordinary mom, and 3) I was told the other day at Zoey's IEP meeting that I was "the best mom ever". While that did make me happy to hear someone say that, it also made me think about the judgements (good and bad) that we put on parents. I'm trying really hard to ignore those judgements, set my own standards and focus on meeting those standards. So again, I'm just an ordinary mom.

As you read my posts here, please feel free to leave comments. I just ask that you respect my viewpoints and keep your comments positive.