Thursday, September 13, 2012

Excited to Introduce.......... Jack the Brave

I am so excited to be back on this blog. The truth is I have been busy with another project that I am thrilled to share with all of you. My Mom and I have co-wrote a series of children's books about Jack the Brave. Jack has sensory processing disorder and must be brave every day in order to experience his World. For the first book, Jack the Brave Conquers the Snow, Jack gets help from family members to join in and have fun in the snow. We hope our books will help encourage children with spd to be brave. We just okayed the final touches on the book and it should be available soon. This has been a project of love and we have been thrilled to see our idea become a reality. I know I could not be prouder of the final product.

Wednesday, March 30, 2011

A Super Memory

I know that it is easy to focus on some of the more challenging behaviors that come with sensory processing disorder. But I wanted to focus on one of the positives. Ryan has an extremely good memory. I am not talking about a typical good memory but something better. Ryan remembers events that happened several years ago. And not just vague recollections but he remembers the tiny details. The first time I realized how strong his memory skills were was when he was 4 years old. We were playing with his toy metal airplanes around the living room. I grabbed one of the planes and made it do flips in the air making an awesome plane engine noise. Ryan smiled and keep saying "hot dog". At first it took me while to realize he was saying hot dog and then it took me probably 2 or 3 minutes to make the connection.
I remembered that a year (yes it was a full year before, well 11 months to be exact) we had gone to an air show and while we were there we bought a hot dog at a food stand. I stopped mid flip in the air and just stared at Ryan. How could he remember that? I looked at him and I said "air show?". He looked at me and said "yeah, air show".
Now that I am more aware of how Ryan's mind works I know that the air show was a new event for Ryan which means he was probably more likely to remember it. Also eating is a major thing for Ryan and a big concern so it is something he would pay more attention to then most kids. But I was still surprised.
Ryan says stuff all the time that demonstrates his good memory skills. Most of these involve new or scary events for Ryan that involve a major sensory challenge. Just this week he was recounting for me who came with us to our first visit to Chuckie Cheese which happened 3 years ago. We have never discussed who was there since the event with him. 
One of my favorite memory story is when Ryan told his Dad how to get to his favorite park from the backseat of the car when Daddy was lost. He did not know the names of the street but he was able to tell Daddy when to turn and which way. His memory for directions was noticed before he could even say right or left and he would point with his fingers which way to turn. Even though I know Ryan has an excellent memory it still amazes me.
Typically with his school work Ryan will take a little bit longer to learn the material but once he has the material he remembers it for life. I think that Ryan's memory skills are going to come into handy for him throughout his life. He also would not have this skill if it was not for his "disorder".

Tuesday, March 22, 2011

The Dreaded T word

For Ryan all transitions are difficult. Transitions include changing of settings or activities and also the big life changing events that happen in your life. Because all new sensory information is a lot for Ryan to take in he likes things to remain the same, to stay the status quo. Unfortunately for Ryan he has had a ton of change in his short life, more change then most adults deal with. Despite his difficulties with transition and change Ryan has been forced to deal with it straight on. Since Ryan was born we have moved a total of six times, that is one more move then the amount of years Ryan has been on this Earth. Some of the moves were minor but most of them were major moves. From Germany to California. From California to Massachusetts. And from Massachusetts back to California. We have lived with extended family and by ourselves. Each move has brought many changes for Ryan, new schools, new roommates, new rules, new friends, and even new places to eat. As his mother, I have always felt guilty that we were not able to provide a more stable beginning for Ryan's life. Hopefully the rest of his childhood will involve less change.
Besides moves there has been an addition to the family, a little sister. And of course there are the more trivial transitions that Ryan has had to deal with like going from school to home, or from playing to going to bed. Each transition brings its own set of struggles for Ryan.
I have found that Ryan responds to most transitions by crying through it. He will cry and do something intentionally until I put him in time out. After time out he is happy and can go on with his day. As he is older now we only see this behavior with the big transitions. But when he was younger he used to do it several times a day. The best visual example I have of this was when Ryan was attending preschool. We literally lived right across the street from Ryan's school so I would walk him across and walk him back. On several days when he was having a hard time with the transition of coming back home he would just collapse on the sidewalk the minute we were out of the blacktop. It was like he would melt in slow motion. He would come home and start screaming and then throw something until I put him in time out. He would then sit in time out and then he would be fine for the rest of the afternoon in the house. I am not sure how Ryan began to associate time out as his transition tool. It probably started because he would become upset over the transition so inevitably he would end up there and he started to use it to calm himself down. One day I was busy and could not put him in time out right away. So he continued to throw things, even though he had stopped crying, until I put him in time out. It was like he needed it to handle the transition.
As a said he does a similar pattern even now. We are in the middle of a big move right now (surprise surprise). We have purchased a home in California but are only living there on the weekends. During the week we are living with relatives. So this is a huge transition for Ryan. On the weekend living in a different house in a different city is a lot for Ryan to handle.  Just this last weekend Ryan cried the entire drive back to the house for the work week. He cried himself to sleep in the car and when he woke up he was fine again.
As his mother it is hard to watch. I felt like crying with Ryan this week as I was watching him try to handle his life full of change. As I said, I wish that life was not so full of change for him but often change is unavoidable. I wish that Ryan could work on his transition skills in small doses instead of the gigantic changes he is forced to deal with on an everyday basis. I can only hope that it will make him stronger as he gets older. As I watch him get upset I feel like I am watching my son fall apart and I wish I could hug him tightly and help him keep it together. Unfortunately it is something Ryan has to work out on his own.

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