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.