Feeling Very Blessed

Right now is such a sad time in Facebook support group land. Obviously, it makes me sad to see so many people struggling to get through the holidays with their sanity intact, but at the same time it is providing me with some much needed perspective. It reminds just how blessed I am.

For most children with autism, the holidays are not nearly as full of joy as they are for typical children. Schedules are completely thrown off, there's a lot more noise and crowds everywhere you go, and there are so many "fun filled" (aka anxiety filled) activities that you are expected to participate in.

For parents of autistic kids, all of this means more stress (cuz heaven knows raising a child with autism isn't stressful enough), more parental anxiety, more meltdowns to try to prevent and/or contain, and more apologies to be made (for said meltdowns because people stare and all you can do is mumble an embarrassed apology).

There are two common themes I have been seeing in postings lately: 1) The stress of family gatherings and 2) Making Christmas work for your autistic child. This is where my biggest feelings of gratitude come from.

My family is awesome. Scott's family is awesome. It makes me so sad to hear other people's stories of spending the holidays with their family and dealing with judgement and rude comments, or being excluded from family gatherings all together because of their child. In our family there is none of this (unless it's done without us knowing, and I can deal with that). Some of that may be due to the fact that Zoey maintains herself fairly well at family gatherings most of the time (she saves the meltdowns for once we get home) but I honestly think that even if Zoey wasn't that way our families would be the exact same way. When Zoey was standoffish, and sometimes rude, to different family members, they never stopped trying. They didn't judge. They just accepted Zoey for Zoey. I'm sure it's easier for everyone now that Zoey has made so much progress socially and loves seeing family, but I have no doubts that she is loved any more now than she was back then.

I do worry about family gathering with extended family (aka the family Christmas party we are going to tomorrow) where she doesn't know people and they likely don't even know that she has autism. I worry about this causing her to meltdown and people not understanding. At the same time, I feel like we have to continue to give Zoey opportunities like this to continue to expand her comfort level with social situations. Even in those situations, I know that our family will support us.

I think I take a lot for granted when it comes to Zoey. Christmas is one of my favorite times of the year. I have all kinds of family traditions that I have either carried over from my childhood or started since Zoey was born. I read people's posts about how they have had to change how they celebrate Christmas and I am grateful that Zoey tolerates my Christmas craziness and actually seems to be embracing most of it. Other people can't leave wrapped presents under the tree or even have trees at all. Zoey hasn't messed with our tree at all. She notices when more presents are placed under the tree, but she doesn't try to open them or even ask when she can open them.

So I just wanted to acknowledge that I recognize that I am blessed in many ways and thank those around us that love Zoey for Zoey :)

Who is this kid?

Sometimes I am amazed at how far Zoey has come over the past month, and especially the past 6 months. She is now talking up a storm. You can't always understand her and she often has to repeat a sentence several times before she gets the whole thing out, but she's such a chatter box. While that in and of itself is wonderful, what I am truly amazed by is the complete 180  that she has done in terms of her social interactions. 

Social deficits were always the thing that I saw as a sign that she might have autism, and when she was diagnosed this past May she was so far behind socially. She did well with adults that she felt comfortable with and who met her at her level (down on the floor playing), but she shied away from less familiar adults and basically ignored other children. Now she is almost overly social. She says hi to people at the stores and restaurants. Tonight she ordered her dinner herself and used good manners (We still need to work on inside voice and waiting until it is her turn to order). At school she has made a "best friend" and talks and interacts with the other children in her class. At daycare, where I was told she played by herself and didn't seem interested in the other kids, she has a best friend and several other kids who all engage in the cutest exchange of squeals and hugs when they see each other. 

We've also had some disappointments socially. I was hoping that soccer this fall would be a great experience for her since Spring soccer had gotten so much better towards the end of the season. It wasn't. It was worse that the start of Spring and we actually ended up pulling her from it because it was making everyone involved miserable. 

So tonight was a bit of a test in my mind. We went to see Santa. In previous years this did not go so well. Two years ago she refused to go anywhere near Santa, so he let her sit in his chair and then he sneaked up behind her so we could get a picture. 

 

Last year involved some tears and we barely got her to stand next to Santa

This year it was like I was there with another child. She was super excited to see Santa. She tolerated waiting in line for close to an hour and did so better than most of the adults there. When it was time to see Santa, she went right up to him, sat on his lap, and told him what she wanted, a book. (We had read a social story about visiting Santa and it said you could ask him for a toy, a book, or a game and she picked a book. Black and white, concrete thinking at work there). He must have asked her a book about what, because then she proceeded to talk his ear off about the book she wanted, which was about a train. She even showed him how a train says "choo choo". LOL! Then when she was leaving she told him Merry Christmas! 

 

Seriously, who is this kid!!!!

Surviving Our First Kid Party

This will just be a short post. I will do a more detailed post on Zoey's birthday in the family blog.
This past weekend was Zoey's first birthday party where we invited other kids. I was super nervous about it for several different reasons. 1) Would there be anyone at the party,  2) Would Zoey even care about the other kids at the party, and 3) How would the non ASD kids (and parents) react to the ASD kiddos. I ended up having no need to worry about any of those things.

In terms of kids at the party, we invited all 8 kids in her preschool class, a couple of kids from her speech group, 4 kids from daycare, and one of her cousins. We ended up having 12 kids at the party. So no need to worry about a lack of kiddos.

I'm not certain which kids have an ASD diagnosis and which didn't. All the kids did so well. We had a few small meltdowns by a couple of kids, both ASD and neurotypical (have I ever mentioned how much I hate that term), but nothing major. All of the kids were fully engaged in the baking activities we did. They also all played really well together when we had some free play time.

Probably the best thing to see was Zoey's reaction to her birthday party. One, she was super excited leading up to it and for the first time really understood what having a birthday party meant. The greatest part though was her reaction when her friends arrived to the house. She was so excited to see them and yelled their names when they arrived (except for a few from school, who I don't think she interacts with as much). She gave the first couple who arrived a tour of her party and introduced them to her family. There was girlie screeching when her best friend, Rohina, arrived at the party, which just made me smile.

I held off tears for the most part. There was a brief moment later at the family party when we were opening presents and the card from Rohina was signed "love your best friend Rohina". There was just something so sweet about that. It was validating to me that Rohina, and her mom, also view her friendship with Zoey as important.

It was just a really good day and gives me so much hope for Zoey's social relationships. I love that she is making connections and has actually made more than I was even aware of.

The Birthday Girl

Best Friend from School - Abbie

Girls Decorating their Hats

Cupcakes Bring Everyone Together

 Hugs for Megan

Hugs for BFF Rohina

The Kids Making Cookies

Group Picture - Minus 2

The Kids Playing So Nicely

Rohina and Zoey

Misunderstood

Just a quick post tonight cuz I'm super tired but have something I want to get off my chest.

We took Zoey to Great Wolf Lodge (an indoor water park) today for our niece's kind of birthday celebration. On our way home Scott and I were talking about a meltdown she had today and hard it is because she probably just looked like a terribly  behaved child. See what happened is that we were looking for her cousin to go on a slide but when we found them they were in the lazy river and Zoey thought that meant we were going there next. When we tried to get her out of the water, she refused to go and had a meltdown when Scott pulled her out of the water. Now anyone watching that scene probably just saw another bratty child throwing a fit because they were told no. However, with Zoey, it's not as simple as that. The meltdown had nothing to do with being told no. It was that she thought we were going in the river and because of the rigid thinking that comes with her diagnosis, that was where we needed to be. People don't see that in her mind, she has tunnel vision and until that task is completed that is all she can see. They don't see that when we pull her away from what she thinks is supposed to happen it creates great anxiety about what will happen next. They don't see her repeatedly asking " what's the schedule" and us having to tell her exactly what we are going to do up until we get home and go to bed. They don't understand that her little nerves are already all out of whack because she is in sensory overload from all the noise and things going on around her. She's just another bratty kid . Sometimes even I forget because she's high functioning and the majority of the  time has minimal issues.

I think all families that are affected by Autism go through this. I hear things all the time about people staring as their kid has a meltdown. I've wanted to make a sign that says "stare harder maybe you'll cure her autism". It's an annoying and frustrating fact of our life. People will stare and people will judge.

My Biggest Fear

Since day one of even thinking that Zoey might have Autism, the same thought has dominated my mind ... What will her life be like from a social standpoint. Honestly, I think to some extent I worried about that even before she was born. I know it was one of the things that crossed my mind when we found out she was a girl. I've obviously never been a boy, but I think in general things are harder socially for a girl than they are for a boy.

I think this whole Autism thing would be a little bit easier for me emotionally if the social component wasn't there (of course I might feel differently about that if the other ASD symptoms were more pronounced than they currently are). I can handle the tantrums. I don't like them, but they are short lived and manageable most of the time. Her rigidity is frustrating at times, but we find ways around it. Her speech is a work in progress. It's the social pieces that I find myself focused on the most.  Hell, the first thing that went through my mind when they told me she needed glasses was "Great. Here's one more thing that will make her standout even more".

Some events in the news over the past few months have made me even more anxious about what life will be like for Zoey as she gets older. There was the incident where a Autistic man (I think he was 18) was lured to a party by a girl and then another man beat him up and videotaped it. I'm sure that most people are aware of the most recent incident in Cleveland where a teenage boy with Autism was told he was doing the ASL ice bucket challenge and then had a bucket full of urine and feces dumped on his head. Who does these sorts of things? It so hard for me to even imagine someone being able to treat another person that way, let alone someone with special needs. I think there is a special place in Hell for those individuals (It's right next to the place reserved for child molesters).

I don't know if I was just naive growing up or what, but I don't remember people being THAT cruel to other people. Now don't get me wrong, I know that bullying took place and a lot of people said a lot of very hurtful things to other people. I know that childhood and the teenage years were Hell for a lot of people I went to school with. I realized years later that I was a pretty big bully to one of the people I actually considered to be a close friend (at the time I just thought it was in good fun and didn't really consider how unfun it probably was for this person), but I never ever would have thought of taking things to that level. So has society really changed that much?

So up until now my biggest fear has been that Zoey would have to deal with an increased amount of teasing and girl cattiness just because she is different. Maybe she'll say things funny. Maybe she'll have interests that are considered not cool. Maybe she will not know how to talk to other kids and carry on conversations. Maybe she will dance to beat of her own drum and everyone else will be dancing in a different direction. Maybe because of those things we would have to deal with an increased number of days where she came home crying because the other girls were mean to her or didn't want to be her friend. Maybe we would have to work really hard to build self-esteem and self-worth. The thought of how I'm going to deal with those types of things is overwhelming at times. But now I have this added fear that Zoey will be subjected to physical forms of bullying and embarrassment (I also fear what Scott would do if that were to occur because then Zoey would also have to deal with having a dad in prison. I'm not joking). I can't even fathom what I would do in that situation. I try and tell myself that people are inherently good and we just hear about the bad things. I also try to tell myself that she will be less likely to endure that level of treatment because she is a girl (I don't know if that is true or not, but it makes me feel a little bit better). The fact of the matter is I don't know what life will look like for her and that scares the shit out of me.

I hope I am able to encourage her to always be herself

Feeling Very Frustrated

So today I had an appointment with a psychologist to discuss potential ABA (Applied Behavioral Analysis) treatment for Zoey. My goal for today was to get a better idea of what areas ABA would be targeting for Zoey and how many hours she would need. I have a basic understanding of ABA due to my work in PA, but I have never been specifically trained in it so I don't know exactly what is looks like and there is a lot of conflicting information out in the internet world. Based on this very basic understanding of ABA, I have been having a hard time envisioning what specfic areas need to be worked on, with the exception of social skills. In addittion to social skills, I view Zoey's other deficits as being that she is overly emotional and will cry even when she is happy, and she has some rigidity and will get upset if things don't go exactly how she thinks they should (but the resulting tantrums are very short in duration). She doesn't throw major fits. She isn't physically agressive. She doesn't engage in self-harm or elopement behaviors. She's potty trained and pretty independent. In other words, from my perspective, her ASD symptoms are pretty mild.

That's why I wanted to schedule an appointment to get a better idea of what ABA would be working with Zoey on and how many hours a week/month she would likely need. ABA is not covered by our insurance policy, which is a whole different frustration, and we have limited county funds which currently go towards her speech therapy, so we will be paying out of pocket for anything we decide to do (cost is $140 an hour). Unfortunatley, I felt that I wasted that $140 I paid today because I walked away with minimal answers. The psychologist started by saying the Zoey needed 25 to 30 hours in order to make progress. I don't know if she was basing this off of the evaluation report I had given her from when Zoey was evaluated at Children's, but I kind of doubt she read the whole report in the brief time I was in the waiting room. Plus, when I asked about what areas ABA would focus or help with she would tell me "whatever her needs are" and then would procede to give me examples of things that Zoey has no problem with, such as potty training, learning her colors, and using two word sentences. I just found it very frustrating that she was telling me Zoey needed all these hours when she didn't have an idea of who Zoey is or what her needs are.

I asked about having a consultant come and do a needs assessment, which she said was a possibility. However, the way she reacted to my quetion made me feel like she thought this was a ridiculous request. She also told me that she could have a consultant come out, but that since I wasn't committing to a set amount of hours ahead of time that she couldn't gaurantee that the consultant that did the needs assessment would be the one that would work with Zoey. I am fine with that and understand the reason behind that, but it was said to me in a way that made it seem like she was just wanting me to say "sure let's go ahead and do 30 hours a week". I'm sorry, but it seems stupid to me to just commit to a set amount of hours when I don't know that Zoey actually needs that many hours.

So I left there not committing to anything. I told her I would discuss the needs assessment with Scott and let her know. The needs assessment would take 5-8 hours at the $140 an hour, so that's a significant chunk of change to pay out of pocket. I just don't know what to do. I don't want to not get services for her if she needs them and they can help her succeed. At the same time, it would be $4200 a month if I went with the 30 hours!!!!

This Week's Super Moments

So I've actually had a couple of times over the past week and a half where I've thought to myself "I really need to blog about that" and sometimes I write part of the blog in my head on the drive home from work. However, once I get the downtime in which I could blog, it just doesn't seem pressing anymore and there are other things I'd rather do. I guess that's a good thing.

The thing I don't want to skip blogging are the Super Moments. I've vowed to keep a positive attitude with all this and Super Moments help me reflect back and focus on what's going well. So here are this week's super moments:

1) Zoey amazes me with her memory and ability to learn. I have no idea if she is actually ahead of where she should be in these areas, and in a lot of ways it doesn't matter. Scott and I are amazed and proud of her, and that's really what's most important. This week Zoey has added the spelling of her last name to her abilities. She is also now able to tell me our address when I ask her where she lives. We also just got her to tell us her birthday as well. This one took a little bit more work because she's been obsessed with birthdays since there were so many in July. However she wanted it to be her birthday and was resistant to the fact that her birthday is in November. Seems she is resigned to this fact because she will now tell us her birthday is November 5th. Lol! I think the thing that makes these accomplishments super to us is that they aren't the result of frequent trials and repetition. I've been able to tell her once and then she has it. We do some practicing just so she keeps the info, but it's not drill after drill. That's just a huge difference from back in April when we'd ask her what her name was or how old she was and she wasn't able to tell us. It took a lot of repetition and drills to teach those.

2) I know I say this every time, but Zoey is making leaps and bounds socially. We visited Zoey's Godparents on Saturday and for the first time she actually interacted with them and wasn't really shy or hesitant. She still needed a little bit more time to warm up to the kids, but by the time we left I think she had started to play more with Nick. She was also very upset when we left, which as much as I hate to see her cry sand I really hate the meltdowns, it shows me that she is connecting enough to not want to leave.

Zoey and Kristy (who by BTW is seriously the best Godmother ever)

3) Sharing is also coming along better. Like with most kids, she has good days and bad days. But I know she understands the concept because I see it in her play. For instance, as I'm writing this she is playing with her zoo animals on the floor. She just had one of the animals tell the other one "I want to ride too " and the other animal said. "We can take turns ".  She understands the concept and has the words, so now it's just about making sure she is using those skills in real life situations.

4) Zoey got her first invitation to birthday party that wasn't for family or a family friend. I asked her teacher and the invitation came from a little girl that Zoey plays with sometimes, so it wasn't an instance of everyone being invited. I would be happy either way, but it means more that the child decided to include Zoey rather than it being a situation where she was invited just because everyone was. I realize that for most parents, it wouldn't really matter, but it just is more evidence of how far Zoey is coming socially. 

4) In JAM they are building up to a trip to the grocery store. Our trips to the grocery store have been pretty good since I started using the visual grocery list with her, but I still make her ride in the cart because if she's out of it she wants to take off. This weekend I took her to the store and the cart started to get way too full, so I reluctantly had her get out of the cart. She did really well and listened to me. Later in the week I had to go to Kroger to pick up a prescription and a few groceries. I got a cart, but let Zoey walk holding onto the cart. Again she did awesome and stayed with me for the most part. A couple of times she let go to move to a different said of the cart, but immediately held on again. I'm just hoping this trip with her JAM groups goes smoothly and doesn't throw any kinks in our well oiled grocery shopping machine.

This Week's Super Moments

Here are this week's super moments

1) I'll start with this one because it is most recent. Zoey went to the doctor today and had no problems. She was a little bit of a handful in the exam room while we were waiting for the doctor, but considering we were sitting in there for 20 minutes, I'm ok with that. She talked to him and did what he said. She answered his questions. Much different experience than her 3 year check up where she refused to acknowledge him and just cried.

2) Zoey transitioned wonderfully today from speech directly to daycare thanks to the use of her visual schedule. I had shown her the schedule first thing in the morning (she asks for it before she even gets out of bed) and as soon as we got in the car after speech, she said "now we go to Kiwis".

3) Zoey appears to have made a friend at daycare. For the past couple of weeks when I dropped her off another little girl would come up and say hi to Zoey, but Zoey kind of clung to my side. I mentioned this girl to Scott and he said he had seen Zoey with her. On Monday when Scott picked Zoey up from daycare, she told him about playing dolls with this girl and she was able to tell us her name (which is Rahena and personally not an easy name for me to remember). Today when I dropped Zoey off, she asked where Rahena was and when Rehena saw Zoey she yelled "Zoey" and they immediately began playing with each other under the tree house. It made my heart melt. Zoey has been doing well with her peers at Jam, but I kind of feel that to some extent that interaction is more forced, so I am glad to see she made a connection on her own.

4) The other day when I was driving Zoey home from speech, she was in the back of the car "reading" a book. One of the characters was telling the teacher she was mad because it was her turn and her friends wouldn't let her play. I was happy that Zoey recognized the emotion and then did the appropriate thing of having the character tell the teacher. One of my big goals with Zo right now is feeling identification and expression. At times there seems to be a disconnect. For instance, at speech sometimes when she is given something she will hold it to her face and in a crying voice say "thank you, thank you". The therapists ask her if she is sad and she says no she is happy, but her face and behavior is sad. Same sort of thing today when I picked her up. She was sitting with all the other kids in the tree house for story time and saw me when I walked in the door. She starts crying and yelling "mommy, mommy". I asked her if she was sad and she said no she was happy. So anyhow, I was happy to hear her correctly label a feeling.

5) All in all I think that Zoey is becoming more social. Not too long ago, like maybe two or three months, she would hide and refuse to interact with people she didn't know or hadn't seen for awhile, even her grandparents. She would say "no" when they tried to talk to her. Lately she has been the exact opposite. She says hello to everyone she sees. She orders her own food when we go out to eat. She's just miss chatty (now we need to work on the appropriateness of those interactions, but for now I'm happy she isn't so withdrawn). This weekend we had a picnic with Scott's family. Without really any hesitation, Zoey was talking to and interacting with Scott's aunt. I think Aunt Phyl got more Zoey time that day then she has in total in Zoey's 3.5 years. Zoey also played with her grandpa, who normally she would hide from (I think she was always a little scared because he is so tall). She talked to her great grandma and wanted to make sure that Grammie was included in the game we were playing. She even helped push Grammie's wheelchair (now Grammie wasn't as big a fan of that. LOL). It was just a great day and a good reminder of how far Zoey has come socially.

This Week's Super Moments

I keep thinking that I haven't been writing on this blog enough, but when I think about it I realize that is actually a good thing because it means I am not needing to vent. LOL! So if all I write for a while is Super Moment posts then that is fine by me.

I belong to a Facebook group for parents of special needs children and Tuesdays there is always a place to post the triumphs for the week. I always laugh when I read some of the posts on there because to a parent without a special needs child some of the things that are posted can seem like such a small, trivial event. However, I laugh because I can totally relate. That's kind of what these posts are about. The people who read this blog (and I think there are like five) may not understand why the things I post are important, but it's important to me to acknowledge what others may view as small, because to us they are big.

1) Zoey ate a hamburger. We were out to dinner with Scott's dad for our birthdays and Zoey insisted that she get a hamburger for dinner. This is not something that she normally eats and will actively refuse when we try to get her to eat it. So we tried to steer her towards her normal of grilled cheese or pizza (mainly to avoid a fit when the waitress brought the food and Zoey realized it wasn't grilled cheese or pizza). However, she wanted a hamburger, so we let her order it. when it came she didn't throw a fit, but she did her normal dissection and just ate the bun and left the burger sitting there. However, at the end of the meal, she grabbed her hamburger, without any prompting from us, and took a bite. She said "yummy" and then proceeded to eat the rest of it (it was slider sized). Now do I feel comfortable adding hamburger into her repertoire of foods she will eat? No! But for that one night she was willing to step outside her box and try something new.

2) The other day when I picked Zoey up from daycare, she was telling me about her name on the craft she did and the letters in her name. So I asked her how she spells her name and she was able to tell me. At first I thought it was just that she was reading them off of her paper, but I asked her later when she didn't have anything to look at and she was still able to tell me the letters in her name. Now we just need to add the last name in there. (I'm always pushing for the next thing). 

She never cooperates when I try to video things, so this is the best I got

3) We took a trip to King's Island on Sunday and despite the fact that Zoey got maybe 5 hours of sleep the night before, she was amazing. She didn't have any meltdowns or even really cry. She was good when we told her we were moving to a different ride and when we were ready to leave the park.

 Zoey on the Viking Fury Ride

 

Feeling Like I'm the Bad Guy

This weekend bedtime has gone so well, but tonight was a different story. Refusal, tears, screaming, full blown tantrum. I try to give Zoey choices (i.e. Mommy can sing goodnight or mommy can just leave). Most of the time it works and she asks me to sing and that's the end of it. Nights like tonight it doesn't. She asks me to sing but then tells for me to stop, and she's stuck on repeat. So I end up having to walk out of the room with her still screaming. Scott stays and eventually she calms down and asks me to come back in to sing and I do. Then she is so apologetic about her behavior and sobs " I'm sorry mommy" over and over again. I feel like such a bad parent in those moments for breaking her heart. But it's all or nothing sometimes with her. If I don't give a natural consequence, she stays stuck. I just wish I didn't feel like I am always the bad guy. 

Thankfully Most Nights End Like This

This Week's Super Moments

A couple of good things happened this week.

1) Zoey allowed me to do her hair 3 days in a row with absolutely no fighting or crying. They were even pretty time intensive hair styles.

2) Zoey continues to do well in speech group and is interacting really well with the other children there.  I think she is making good progress towards her goals.

3) Today at the park, Zoey told me "I want to play with that girl" and with prompting she asked her to play (sadly the other girl didn't respond). She also joined in with a group of two other girls who were playing.

4) Zoey's pronunciation is really improving. She is doing a great job with the ending K sound.

5) We instituted a visual schedule this week and Zoey has really taken to it. She is also showing good retention of what is on her schedule.

Building a Visual Schedule

Visual scheduling is a pretty big thing in the ASD treatment community. I know that I have recommended it for many of the clients I see for evals in PA. So it was no surprise to me that it was part of the recommendations we received when Zoey was first diagnosed. What did surprise me is how long it took me to get around to making it and how much I struggled with figuring out how to use it.

For the most part Zoey does fairly well with transitions, except for when we are transitioning to a task that she really doesn't want (i.e. bedtime). However, even with those transitions she is hit or miss. Sometimes she transitions just fine and other times there is a meltdown. When she does have a meltdown, they don't last too long, but they can still be emotionally exhausting for everyone. So I'm hopeful that the visual scheduling will help.

I just wasn't really sure how detailed or structured I wanted to make her schedule, so I consulted a FB group I belong to and got some feedback from parents who currently use a visual schedule for their kids. Today was the day that the schedule was created. I did some Google searches for clip art for the various daily tasks Zoey has to do. I also used some real pictures from my photos for some of the important family members in her life (i.e. aunt, grandparents), just so we could include visits with them in the schedule. I also had to do a separate picture for Zoey's group speech and her individual speech. This is an area where we have been having meltdowns. On Mondays she does group and then immediately does individual, but on Wednesdays she does group but doesn't have individual. Zoey gets very upset when we get in the elevator to leave because she thinks we are supposed to see Leslie again. Then there are off days like today, where we had to reschedule individual, so we went in on our off day and then didn't have group. That lead to a major meltdown. I'm hoping that these visual cues will help her understand what is happening and know what to expect.

So after I found all my pictures, I printed them off, laminated them, and then added a magnet to the back of each one. I took an old magnetic board we had and made a simple schedule for right now. I figure there will be some trial and error in terms of what works and what doesn't. We just used the schedule for the first time and used it to transition to bedtime. While Zoey was watching her evening wind down show, I showed the schedule to her and reviewed it. Then I just left it where she could see it. When her show was over I asked her what was next on her schedule and we smoothly transitioned through the whole bedtime routine. Not a single tear was shed. Zoey made a modification to the way I had her schedule set up. I had bought three colored square magnets (2.5" x 2.5") and I wasn't really sure what I was going to use them for. Well, Zoey saw them and decided that the task we were currently on went on them, so I rolled with it and used it to mark the task we were currently doing and then when we finished that task, we moved the next task to the pink square. Now I'm thinking that I will use that and then also use the small squares to help with transitions outside of the home since they will be more portable than the bigger magnet board. I think I'll try that tomorrow for when we go to speech and run errand afterwards.

Zoey's schedule for tonight

All her extra pictures

Zoey's schedule at the end of bedtime

Squares I will take out with us tomorrow

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.