Monday, February 28, 2011

Chuckie the Mouse Part Two

A little bit ago I devoted a blog to my sons irrational fear of characters, especially of Chuckie Cheese. Recently there has been an update in this department so I figured I would share it with everyone. Ryan was invited to his first friend's birthday party at Chuckie Cheese. Now being a Mom who does not want my son to miss out on any activity just because he is afraid, I wanted him to go. Luckily we got the invitation about two weeks before the actual party so we had time to prepare.
Ryan wanted to go but I could tell he was very nervous. All of a sudden all his conversations revolved around Chuckie Cheese. He was drawing pictures of Chuckie Cheese in his classroom, having me rewind shows so he could watch the Chuckie Cheese commercials, and discussing the giant mouse with me at length. From what I could gather he wanted to play with his friends but he was terrified of the mouse saying hi to him. He knew that at the birthday parties there is always an appearance by the mouse.
Well I decided to do character training with Ryan. We are lucky enough to have season passes to Disneyland so one day when it was too crowded to wait in lines for rides, I bought the infamous "Disneyland autograph" book and we made the rounds. Now in the past when we have been at theme parks Ryan would scream and literally jump into my arms whenever he spotted a character. Even if the character was no where near him. We have been working on it and we have it now so Ryan could walk fast past the character and not make eye contact but he would not cry. He would get very tense. So I was expecting a disaster.
But when we made it to the front of the line to meet Dale the chipmunk Ryan came over and gave him a high five! I was shocked. It did take a minute for him to come over and I had to go over first and ask for Dale's autograph. Well after that Ryan was running around trying to get as many autographs as he could. He even posed for a picture with Pluto who had touched his head with his paw. Again I was expecting a disaster but Ryan laughed and talked about that moment for the whole week afterward. I was so proud of my little guy I couldn't stop smiling all day.
His big party was a few days after this so I was feeling pretty confident. I figured if he conquered the characters at Disneyland, Chuckie Cheese should be a piece of cake. Well we got there and Ryan ran off with his friends, not even acknowledging me. Again I was thrilled. But when it came time for the party Ryan started to get nervous, really nervous. He would not sit down to eat with his friends and keep running into the bathroom to hide because he was afraid that Chuckie Cheese was coming out. I tried to make a deal with him and told him I would stand with him in the back of the restaurant far away from Chuckie Cheese but he had to watch him. Well Ryan got too scared and ran into the bathroom and locked himself into the stall. I did not feel like crawling under the bathroom door, so I let him be. At the end though he finally unlocked his door and I brought him out to see the back of Chuckie Cheese as he walked away. After that Ryan was fine and enjoyed the rest of his time. Most of his friends did not even notice that he had left. Regardless I am proud of how far Ryan has come and I know we will conquer the last step soon.

Tuesday, February 15, 2011

Person First Language

I am in a credential program to get my Education Specialist Credential (a fancy way of saying special education). In all of my classes, on the first day of class, my professors go over person first language. As a Mom of a child with a disability I had never heard of person first language until I was in school and it surprised me. At the outlook it looks like a simple fix. Something that should be inconsequential but when you look at the ideology behind person first language I think it is really powerful. I encourage all of us to use person-first language. Not just for children with disabilities but for everyone.
Person first language is very simple. Instead of saying "sensory kid" or my "SPD son" you are suppose to put the PERSON FIRST and say "my son with SPD". The idea is that a child's disability or label should not define them. That a child is a person first and their characteristics are second.
I have discussed how I always worried about labels with Ryan. I was so concerned that people would not see Ryan and instead they would see a walking and talking IEP. I didn't want my son to be limited or looked down upon just because he was diagnosed with sensory processing disorder. In my head Ryan was Ryan and his diagnoses is just a part of who he is, a piece of the cake so to speak.
So when I first heard of person first language I was excited because I felt like people are trying to recognize the individuals beneath the diagnoses. Because as far as I know there are no two children with SPD that look alike.

Friday, February 4, 2011

Crazy Inducing Guilt

The logical side of me has always known that Ryan's disorder is not my fault. I have always been the type of person to put more value in my logical arguments as opposed to my emotional ones. But like anyone, the emotions can make you a little crazy sometimes.
In the beginning I felt so much guilt for Ryan's disorder. I felt that I was a failure as a mother and that I had not tried enough with Ryan. So I then did the exact opposite and tried too hard. My whole life became even more intertwined with his, which is saying a lot from anyone that knows a new mom and the obsession they have for their baby.
I think the guilt stemmed from the fact that it is the parents responsibility to raise their child to be productive members of society. So when Ryan was delayed I felt like I had failed him. That I had done something wrong. This feeling was also intensified by the therapists coming in and explaining how to do things with Ryan. I felt like Super Nanny was in my house 24 hours a day telling me what I have been doing wrong and how I need to fix that.
So I would watch intently while the therapists were over and then repeat things they did with Ryan for hours everyday. My house also started to resemble a toy store because I bought so many toys thinking that if only Ryan had this toy then he would not be delayed in his fine motor skills. Or if he had this toy he would not be behind in speech.
I spent so much time in "play therapy" with him that I spoiled him in a way. Now that I have been backing off from Ryan and trying to teach him independence I realized how dependent on me he was for everything. I realized how much I was doing for him instead of teaching him to do it for himself.
Of course I know now that I was going crazy. Any toy in the store was not going to change Ryan from who he is as a person. The therapists were not judging my parenting style, they were showing me how to help Ryan in his development. Also Ryan's disability is absolutely not my fault. Actually his disability is just one characteristic of who my son is as a whole. Just one part of the beautiful picture. Without his disability he would not be my little boy who I love so much. I stopped blaming myself and stopped looking at Ryan's disability as a problem because it is not a problem. It is just Ryan.

Tuesday, February 1, 2011

The New Website

Well today is the big day. The new website launched for the Sensory Processing Disorder Blogging Network! I am really excited. This website provides one location where people can go and read many people's stories that are all related to SPD. I was lucky enough to be put on the interview and review team for the website. My first interview with the author and illustrator, Martha Roth-Fisch (Sensitive Sam) is scheduled to post February 14th. There is also a giveaway of her book along with the article.
The website is great and I look forward to writing more through the blogging network in the future. Check it out at