Anxiety

As I have been going to therapy with Nicole, I have been learning more about Aspergers and the behaviors that come along with it. A lot of the things that Nicole does and says suddenly makes a lot of sense. For some reason, as I learn more about Aspergers, I start to see Aspergers every where; not just in Nicole, but also in my self and in others.

A lot of the traits that come along with Aspergers, I see in people all around me; my mother-in-law's OCD with cleanliness, my sister's need for order, my own anxiety with sleeping, Matt's need to complete a task, my mother's attention to detail, my nephew's super intelligence, ect... I don't know why this happens, but I am starting to realize that Nicole's behaviors are not unique to Aspergers; it is the combination of behaviors and anxiety that make her different from everyone else.

We recently found out that for a girl to get autism, both parents must have the recessive gene (for a boy, only one parent needs to have it). And since then, I see so much of the autistic traits in myself. Matt has been doing the same. Perhaps this is just a consequence of having an autistic child. For instance, I have anxiety about travelling and it affects me physically; I get physically ill when I am travelling; I don't know why. Matt does not feel comfortable in social situations. For instance, we never have a Birthday party for Matt because he literally does not like them; they make him feel uncomfortable. We start to seriously wonder if we are a little autistic ourselves... but then we remember that we are not super smart and don't have all the other behavior issues that Nicole deals with.

But, one thing that I have discovered is that I have a lot of anxiety. I actually realized this during therapy. The doctor asked me if I had a history of anxiety. I know that my mother's side of the family has anxiety disorders and that my mother worries a lot, but I didn't think it applied to me... until it was pointed out to me that I am a worrier. The doctor told me that my whole body is constantly tense with worry; which is not too out of place in a therapy session because I worry a lot a lot about Nicole. But, perhaps, I have inherited the anxiety disorder that is on my Mom's side of the family. I don't know, but it is one more thing for me to worry about.

So, I shouldn't be too surprised that Nicole has a lot of anxiety when her mother is a worrier. Nicole is afraid of many many many things; the dark, new places, not knowing our schedule for the day, messes, eating, Dano "getting her," people in her space, people touching her things, large crowds, new people, riding in the car, spiders, bugs, long nails, pain, making mistakes, crooked lines, spots, anger, incomplete tasks... to name a few.

So, I suppose, I should learn to manage my anxiety and then I can help Nicole with hers... or, more likely, as I go to therapy with Nicole and learn tactics to help her overcome her anxiety, I can use those same tactics to overcome my own. Or, I can try at least.

Therapy

So, sometime in June, Matt was hired on full-time at Adobe and we finally got real insurance. Which was awesome because I was able to do something that we have been wanting to do for a while. I called a bunch of places and found a child behavioral therapist for Nicole.

After getting her tested with the school district, we really wanted to get Nicole officially diagnosed. It wasn't that we didn't believe the results of her earlier testing, it was that we want a real diagnosis from a doctor for our own comfort and for Nicole. Putting a name to the issues we have been dealing with with Nicole.

So, we took Nicole in to therapy and the doctor tested her while Matt and I filled out our own tests. It went very similar to what we went through at the school district, but it took a lot less time and it was a lot easier because we didn't have Dan there dying to be entertained by us.

The doctor determined that Nicole does indeed have Aspergers, or high functioning autism. It goes by two names. It was what we already knew, so it wasn't a surprise, it was more of a relief. It was a relief because most people are surprised when they find out that Nicole is autistic and some were even skeptical of the diagnosis, so we can say with assurity that yes, Nicole has Aspergers.

The doctor said that he knew right away when he met her because of her behavior and mannerisms, but the test confirmed it. What does this mean? It means what we already knew. Nicole has trouble with new things, with change, and has a difficult time adapting. She has high anxiety and can easily be over stimulated which results in melt downs or tantrums. She has trouble with physical coordination and is prone to clumsiness. And a bunch of other stuff that comes along with Aspergers.

We have been going to therapy with her regularly and I must admit that it is really more for Matt and I then it is for Nicole. The sessions involve Matt and I talking to the doctor and getting ideas of things to try each week to help Nicole overcome her anxiety and improve her overall happiness.

Some of the things that we have been doing...

Reward System: We started a new reward system with Nicole, per the doctor's recommendation. I was doing a sticker chart system with her, but we have switched to punch cards. She has three different cards that she works on: Following Directions, Eat Your Food, and Look in the Eyes. The cards have 20 spots that I punch out with a heart punch when she does the indicated action. Then, when she gets all the punches, she gets a little candy. This has helped immensely! She tries really hard to get punches and finishes about a punch card a day, so she is getting a lot of rewards which pushes her to try harder to earn punches.

Social Stories: We wrote a book with Nicole and illustrated it that is supposed to help her with something that we are working on with her. We wrote one for bedtime as it still takes around 1 to 2 hours for her to fall asleep every night. It has helped a lot with her being able to relax and stay calm at bedtime as she often has a lot of anxiety about going to bed and falling asleep.

Playdates: Part of Nicole's therapy is to have lots of playdates with structured play (play with games and rules instead of freeplay). I have set up a lot of playdates for her, but I have had to cancel all of them this month because Nicole has been sick a lot this last month. So, this is one that I am still trying to accomplish. It is also a lot of work for me. Not only do I have to set up a playdate, but I need to set up games or activities for the kids to do. But, I will do it because I can be super mom. The mom who is very involved in my kids play and activities and also does the housework and the cooking and also looks good.... okay, I can maybe do some of those things. I am trying here.

Worries: We are working on relieving Nicole's anxiety. We are starting "worry time" where Nicole can express her worries to us so that they don't weigh on her so much. So far, Nicole has a hard time thinking of what worries her unless she is worried in the moment. We will keep trying on this and hope that it helps.

It is a lot of work for Matt and I. We have to actively try new things every week and change our routines and I have to give Nicole a lot of attention everyday. Sometimes I feel bad for poor Dano because I have to put so much time and attention into Nicole that I don't have as much time to play with Dano. Luckily, during the week, Matt is home and he plays with Dano a lot while I work with Nicole.

Despite that it is a lot of work, I think that therapy has really helped. Before, I just didn't know what to do when Nicole continued to have meltdowns and crying fits and tantrums and was afraid of everything. Now, we actually have a plan and tools and tactics to help Nicole. Plus, Nicole starts public preschool soon, which I am really nervous about, so I am hoping therapy will help us help Nicole adjust to this new change.

So, one of the really cool things about Aspergers is that Nicole is super smart. During her testing with the doctor, he rated her at a 9 year old intelligence. She is just so smart. This month, she taught herself to read. She just started sounding out short words all by herself. We have been working so hard on behavior that we haven't had the time to work on academics. So, I guess she just figured it out and started doing it. I need to find the time to teach her more because she absorbs information like a sponge.

So, we are moving forward and trying hard to make things better for Nicole and for ourselves as it is not easy some days.

Aspergers

This is a hard post for me. Even now, I don't know if I can find the words. Every parent wants their child to be perfect, wants their child to have all the potential in the world, wants their child to have a childhood that is carefree and relatively easy. And when I discovered that my child, my beautiful little girl is going to have to face challenges that I never had to face, it broke my heart. I would do anything to take away the many things in life that will be hard on her, but at the same time, I know that we all face challenges in this life and this one will be hers... and mine... and Matt's.

If you are a long time reader of my blog, you know my Nicole. You know that she is super smart, very expressive, funny, emotional, fearful, and a little OCD. Matt and I always knew that Nicole was more sensitive and emotional then other kids her age. We also knew that she had some behavior problems and often threw tantrums. But, we always thought that it was a phase, something she would grow out of, something we could help her to work past. We have changed our lives in so many ways to accomodate Nicole's "particular" habbits; I plan our meals around things that Nicole will eat, we try to avoid places with large crowds because she has crowd anxiety, I help her go potty because she has a meltdown if the toilet paper doesn't rip straight across, her room has four different sources of light because she is afraid of the dark and we also have lights that stay on all night to help her fear, and I have developed mantras for Nicole to help her overcome a lot of her fears... to name a few.

Not long ago, with the help of my Mom, I came to realize that Nicole is not growing out of her many fears and quirks. And, her behaviors are not typical for a little girl her age. I always just thought that she was a little odd, a little clingy, a little high maintenance for a child, but I started to think that maybe something else was going on with my sweet girl. No parent wants to think that their child is outside the norm, I have been in denial for a long time, thinking that Nicoley was just a little off. But I started to realize when I saw Nicole interact in preschool that she just isn't the same as the other kids. When the other kids have play time, Nicole would rather sit by herself and draw, write, or read. When Nicole would become non functional because she forgot her show and tell, the other kids just show their shirt or pants when they forget.

So, after talking it out with my Mom, who has been a special education teacher for almost 20 years, and then talking it through with Matt, we decided that we should get Nicole tested. The school district offers free testing for their special ed preschool, so after multiple phone calls, I finally got an appointment for Nicole.

We went as a family, since we couldn't find a sitter for Dan and Matt and I both wanted to be there. Nicole was a champ and even though she was scared at first and didn't want to answer any questions or deal with the ladies doing the tests, she eventually warmed up and did great. Testing Nicole also means testing for Matt and I as many of the questions about her abilities, behaviors, and adaptability can only be answered by us. The questions were really hard to answer. I know my daughter, but a lot of things were not even anything I had thought about before. Like, does Nicole initiate conversations or physical contact with adults who are not us? Or with her peers? Can Nicole get herself a glass of water? (I don't know because she has never tried, she always asks for water) The testing went on for two hours and by the end of it, I think all of us were ready to be done. Near the end, Nicole was just refusing to answer questions.

And, at the end of it, the kind women there helping with the testing, scored Nicole and gave us the news that we had been fearing. Though they are not qualified to diagnose, they gave us a probability. It is Very Likely that Nicole has a form of Autism. They told us that it is most likely Aspergers due to her high functioning. It is one thing to suspect a thing and then another thing to have someone else tell it to you. I held it together like a good mommy and didn't let my sadness show and had myself a good cry later that night when I was alone.

Nicole scored Above Average in speech, academics, and cognitive reasoning. But, we always knew that she was an exceptionally smart little girl.

The good news is that because of Nicole's test scores, she qualifies to go to the special ed preschool that Provo School District offers. It is a free preschool with bus transportation and small classrooms. They say that early intervention is best for children with learning disabilities. Nicole's disability isn't due to an inability to learn new things, but in social anxiety. If Nicole was put into a classroom of thirty children, she would have a meltdown because she wouldn't be able to handle that many people around her. Nicole will be able to start getting the tools she needs to overcome a lot of her anxiety outside of the home. We are so grateful for programs like these that can help our sweet girl.

Matt and I have done everything that we can think of to help Nicole with her fears and emotional..ness. We have changed our home and the way we live to try and help Nicole be happy. We have done everything we can for her in our home. But, when Nicole is not with us, when she is outside of the home, she has a really hard time and I really feel for her. Not everyone understands why she is so emotional and crying all the time, or why she won't eat lots of different kinds of foods, or why she goes off by herself when there are too many people around. She needs the tools to help her function outside the home.

Nothing has changed about my little girl to me. She is still my Nicoley; sweet, funny, straight forward, and mine. This new information doesn't change who Nicole is, I just will now have the tools to help Nicole be a happier girl. I love my girl so much and I wish she didn't have this challenge to face, but it I know that Matt and I will be able to help her.

We want to take Nicoley in to see a behavioral therapist to get her properly diagnosed, but right now, our insurance doesn't cover it. And, we have had a lot of recent unexpected expenses, so we will have to wait to take her.

This is a hard topic for me. I have put off posting about this for over a month now. I have put off posting about anything for over a month now because when we found out about Nicole, I felt like it consumed my life. I think about it all the time, it has changed my actions and attitude as a mother. I feel a constant worry for my Nicoley. I worry that I won't be the kind of mother that can meet the needs of a special needs child. I feel guilt for not figuring this out sooner. I feel sorrowful that Nicole will have challenges that so many other kids don't even have to think about, let alone worry about. I feel afraid that this information will change how other people view Nicole and that it will change their views negatively. I feel afraid that some people won't understand and will judge Nicole's actions when they are out of the norm and then judge my actions as a parent. I feel overwhelmingly sad... a not small amount of the time.

I have been so frustrated these last three years as Nicole's behaviors have escalated. I felt like a failure as a parent. I have tried so many different things to regulate her behavior. I've gotten sterner and firmer and more angry with her in the recent months. But then, after we learned about the Aspergers, I started doing research and it so very fits with what we have being seeing with Nicole. So, Matt and I both changed our behaviors as parents. We read blogs and websites and started talking to other parents of autistic children for advice and it has helped so immensely. Instead of being harder and harder on Nicole, we have become more understanding, more comforting, less angry and more loving. And the changes in her have been so drastic. As we have changed our behavior, she has also changed hers. When we are dealing with a Nicole tantrum and we approach her with love and caring, it ends a lot faster then when her tantrums resulted in punishments. I started an aggressive reward system and it has helped so very much. She strives for good behavior to earn her rewards. So, even though an Aspergers diagnosis has been a very painful one, it has also been a blessing. Our home is so much happier knowing what we are dealing with and knowing how we can help our precious girl.

And though I still have my fears and my emotional parental turmoil, I know that we can do this; I can do this; Nicole can do this.

I have been scared to tell my family, tell my friends, tell... anyone. But I feel like this knowledge has been good for us as parents and for Nicole. So, I'm hoping that telling others will be good for us too. One of the special needs parents groups that I went to talked about how one of the hardest and most important things is to ask for help when you need it. So, I am asking for understanding, for love, and for support; for my family, for my girl, and for me.