What Will the Future Hold

What will the future hold? That is a question that I became obsessed with when Zoey was first diagnosed. Over the past couple of months I feel like my anxiety regarding that has decreased to the point that I really don't think about it too much. Well, at least that was the case until a few days ago.

I think the main reason my anxiety decreased was because Zoey has been doing so well. My biggest concern for her has always been her being able to make friends. However, since she started school I have been feeling more optimistic. She developed a friendship with Abbie (her BFF from school) all on her own. She has several different kids that say hello and goodbye each school day. At daycare, she is now interacting with the other kids and talks about them by name when she is at home. When you have been agonizing because those things weren't happening I think it is easy when they do to be so grateful that all the other things get glossed over.

Then the other day the stars aligned to remind me that things are not as great as I would like to make them out to be. It started when I read a blog post that someone posted in one of the groups I belong to. The title was The Unique Grief of Special Needs Parents. The parts of the post that got to me where the following:  

The social differences are much more noticeable at age nine than they were at five.  Instead of getting better, in many ways, the disability has worsened.  




But the hopes and dreams I had for my child die a little more each day as I watch him move forward in life.  When he was just five or six, I had hope that he would outgrow certain behaviors with age, that he would function better.  It was that hope that kept me going.  Yet here we are at age nine, and while some behaviors have improved, others have declined.

If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others.  He will always be different.  

Excuse my language, but Fuck! Why can't I just be anxiety free for just a little while? Now I am back to looking at everything she does and analyzing it. Last night she was jumping up and down while watching a show and I told her to stop. Not because it was annoying me or anything, but because I didn't want it to be self-stim behavior. I hate that I went to that place. If she needs to stim, which I don't even think she was, then she should be able to do so in the comfort of her home.

It wasn't just this post that has my anxiety up. It was like the perfect storm. On Wednesday Zoey had a meltdown (albeit a mild one) at Tae Kwon Do. Then she wasn't listening and following directions and Scott was getting frustrated with her. He said something along the lines of "I don't want people to look at her (or treat her) like she is different" (I'm not sure which one it was). I told him, "she is different, whether you like to admit it or not". Then on Thursday Zoey was outright rude to her best friend. She told her "I don't want to see you. You aren't my best friend". Then 5 minutes later she is giving her a great big hug. Then when I picked her up from school she asked where Abbie was and why she wasn't going down the slide with her. But then when I asked her why she was rude to Abbie earlier she told me that she just wanted to be friends with Audrey (a girl that is in Abbie's class). I talked to her about how you can be friends with more than one person. "Oh. Ok mom. Thanks". That's the response I get. She just doesn't get social relationships. She doesn't see how saying what she said is just as hurtful as what the boys who made fun of her shoes earlier in the week. She has friends, but she doesn't understand what that really means.

Those things, those are the things that make reality come slamming back down. She has made so much progress since she was first diagnosed, and that does give me hope and I do think she is going to be happy. I think she will have good relationships. I just know that it won't always be easy and that kills me. That keeps me up at night.

C.O.P.E.S

When Zoey was first given her diagnosis, I posted a couple of things on my Facebook page regarding the fears I had and the stress I felt regarding making the "right" choices. Someone I went to high school with saw my posts and invited me to join a FB support group for special needs parents called Lilly's House (it's name has changed now due to stupid and unfortunate drama, but will always be Lilly's House in my mind). Anyhow, this support group is awesome and they do all kinds of events and get togethers in addition to the online support. Unfortunately for me, it is based in Southern California, so that makes it kind of impossible for Zoey and I to participate.

I searched Facebook and found some pages for autism families in Columbus, but nothing that even comes close to this other group. There have also been a couple of different people who posted about wanting to do play dates or get togethers but nothing ever seemed to materialize. So I decided to take things into my own hands and create my own group. I knew that I couldn't do it completely on my own, so I reached out to a mom I knew from the Columbus Autism page and asked if she would be interested in taking this journey with me. She was kind enough to agree and we met that weekend to discuss things.

Lisa and I had a mini support group with just the two of us that day at Mimi's Cafe. It was so nice to just talk to someone else, face to face, who was struggling with some of the same things I was. After our meeting, I came home and brainstormed some names. I'm not very creative when it comes to things like that. The name Lisa and I ended up settling on was C.O.P.E.S. which stands for Central Ohio Parents for Empowerment and Support (although I'm thinking of seeing if everyone is ok with changing it to Central Ohio Parents Empowering and Supporting because I just like that better. It seems more appropriate since we are about empowering and supporting each other rather than advocating for empowerment and support. If that makes sense).

C.O.P.E.S is open to parents of children with any special need. However, right now the majority of the members have children on the spectrum just because that is Lisa and my base for inviting people to the group. The goal of the group is really to foster face to face connections between the members. The online support is great, but there is really nothing that compares to that face to face. The group has been up and running since January 24th and has 63 members. Not all of the members are what I would call active. We had two events planned for February, a play date and a coffee time. The play date had to be canceled unfortunately due to a big snow storm we had. The coffee time was the next weekend and I think it was a great start. Lisa and I were a little nervous about no one showing up, but pretty soon three people were there looking for us. Then someone else came a little bit later, so there ended up being six of us hanging out and talking in Panera. It was such an encouraging start that I can't wait for our next meet up.

I hope that we can continue to grow and develop C.O.P.E.S into something really special.

Where Do We Fit

I've found my self wondering a lot lately where Zoey, and therefore I, fit in terms of the Autism world. Zoey is very high functioning and there are times that I wonder how she even ended up getting a diagnosis (because a lot of more severe kids have had a hard time getting a diagnosis from Children's). Now let me clarify, I do not think that her diagnosis is wrong. I know enough about Autism and see her on a daily basis, so I see the symptoms/behaviors. However, from the outside looking in, they are a lot harder to see.

I find myself reading various posts from the online support groups I am a part of and I at times feel like an impostor. We don't have the sleep issues where she is up all night or up in the wee hours of the morning. We don't have the physically aggressive behaviors when tantrums happen. She is verbal and able to communicate fairly well with us. The other day she spent some time at her grandparents' house and was there with four other children. We were told that she was actually the best behaved.

I read a post the other day on Facebook that asked what things other autism families couldn't live without. It was in regards to the person's iPad dying and the upheaval that caused in the home. I thought and thought and thought about that and I really couldn't come up with anything. There are things that Zoey gets attached to and she will have a fit if we can't find it or if she thinks we are taking it away from her, but she can always be redirected and calms down. We aren't the what I think is pretty typical autism family where there is something that the child has to have at all times and can not go without.

However, we also don't fit nicely into the neurotypical world. She still struggles with social skills, appropriate boundaries, and having a back and forth conversation. Today I was at the dentist and the dentist's daughter, who was born a few months before Zoey, was in the office. I was listening to her have a conversation with the staff and I was reminded just how far behind Zoey is in that area. She has made so much progress since May and I am always hearing from her teacher and speech therapist how wonderfully she is doing that I sometimes don't see just how far behind she still is socially.

We still struggle with meltdowns over things that other children would not throw a fit over. For instance, we had one the other day because she wanted to have three books in bed with her and three toys, and three blankets. She gets upset at her social skills group if she isn't able to sit in the number 3 chair. If things are different than she expects them to be, it will throw her off at times.

So I'm left feeling frustrated. I need to vent sometimes about the things she does struggle with and the impact those things have on us, but at the same time I feel that I can't do so on the support groups because our issues aren't as bad as most people's. In a lot of ways I am grateful for that. It just at times makes me feel that as a special needs mom I don't really belong.

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.