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.