Saturday, May 25, 2013


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.


Adrianne Miller said...

Awh Becky, this is an amazing blog post. I loved reading it. I am sure you are having a very hard time with things. I think you need to watch the TV series "Parenthood," if you haven't already. Aspergers is a huge part of that show. It's one of my favorites. If there was ever a mom that could handle this, it's you. Luckilly for Nicole, she has a great Mommy who can help her approach the world differently.

Becky said...

Thanks adrianne. I actually have seen parenthood and it has actually given me some good ideas to help nicole. Nicole is not as severe as the child portrayed in parenthood, but the parents depicted in the show have given me comfort at times.

Rebecca Susan said...

Is it weird to say that I enjoyed this post? Not that I'm glad that you or your little girl has to manage these challenges, but just how well you articulated the thoughts, processes and emotions that parents go through in all of this.

We noticed that Dylan was a bit odd quite young--he started speaking very late, was (still is) an insanely picky eater, was seemingly unaware of the existence of anyone beside me, Doug, and his sisters, he had some OCD-like tendencies (most of them revolved in some way around his obsession with cars), had a meltdown if I veered from certain routines (you should've heard him scream at me when he was 3 and I walked on the opposite side of the street as I usually did when picking Keilana up from school).

My dad, though he has never been diagnosed with anything, I'm certain would be diagnosed with Asperger's or high functioning Autism if he were going to school now (they just thought he was very smart and very odd because of it growing up), and Doug's brother has some similar challenges, so we were a bit concerned. Then, a good friend of ours who has a daughter with profound autism, babysat Dylan when we was about 25 months. When I picked him up, she asked me about several of his behaviors and his lack of language/interaction and asked if we had considered having him evaluated.

By the time he had started preschool, we had figured out effective coping mechanisms for most of his behaviors, and others, while odd, didn't cause any trouble for him or anyone else. When his teacher asked if we'd like him evaluated, we explained that, unless it was causing him problems in class or socially that we weren't seeing, he was actually doing really well at home and in our other social environments for the most part. So, thankfully, things have been relatively easy for us and him. But I have several friends who have stories much more similar to yours, and I think they would love to read this, and hear not only that they aren't alone in this journey, but aren't alone in how they feel about it!

Becky said...

Thanks becky. I wrote and rewrote and rewrote that post because it is so hard to express all the things going on in my head. I am glad that I came off as understandable and not just word salad. Also, thanks for your experience with your son. Sometimes just knowing I am not the only parent out there is encouraging.

Deanne said...

You have all of our love, support and understanding. I know the depression, mommy guilt for not catching something earlier, wanting so badly to take it away, etc. When Sean was diagnosed with Type 1 Diabetes we felt all of that. I used to think we were only given things that we could "handle" and were spared the things that would be too hard for us. I have since learned that we are given what we need to learn, grow and progress. You are such a great mom, Matt is a great dad and you will continue to do an amazing job raising her. Your post was beautifully written.

Laura said...

Beautifully written, Becky. You and Matt will help Nicole navigate this life wonderfully with the help and support of family, friends and teachers. You are not alone and neither is she. She will grow up to be an amazing woman with her own talents and abilities that she will use to bless the lives of others. You will all be fine. Believe and have faith.

Jenni Elyse said...

Hi Becky, I don't know if you even look at your blog anymore because I've noticed you haven't updated it for about a year and a half. But, who can blame you with 4 kids and two littlest ones being twins. I also know that we kind of had a little bit of a falling out with your second pregnancy because I wasn't very supportive and I'm sorry about that. It's one of the reasons I wanted to comment on this post, so I hope you do see it. I am very sorry for being so unsupportive. I had no right to tell you the things I did on Facebook, especially since I have never been pregnant and since everyone deals with pregnancy differently.

The reason I'm commenting on this post is that I thought it might help you realize why I did the things I did better. I've found out in the last year that I also have Asperger's. It has opened my eyes to so many things, to why I am the way I am, and why I do the things I do. I really wish my parents would've realized these things when I was a child, but of course, autism/Asperger's wasn't as known back then and as a result, there are a lot of adults with Asperger's that don't even know it. (My dad and my older sister also have it.)

I'm really glad you found out early for Nicole and that you're going through therapy. I hope things have gotten easier for you in the last almost three years and that Nicole is learning to be okay with herself as she is, plus learning how to cope with things beyond her control.

Anyway, I wish you the best. And, I'm glad that everything was going well as of September 2014.