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.