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

Friday, January 28, 2011

Winter Blues

Just this summer we moved to the ever-constant warmth of Southern California. Actually today, at the end of January, my thermometer in my car read 82 degrees and I actually put the air on in my car because it was too hot. But before this year, Ryan has always lived where it has snowed in the winter. As always Ryan has a hard time getting use to things, because of the way his brain sees the world it takes a longer time for him to get use to new sights, smells, tastes, and basically all sensations. So getting Ryan to like the snow was a long process.
For most of the winter, snow covered the ground where we lived and it was almost impossible to leave the confines of your house without coming across some sort of snow. Ryan did not want to walk on the snow, touch the snow, or wear any of the clothes associated with the snow. To get Ryan use to things we did what we always do and go slowly.
For the clothes it took about a month to get Ryan to dress for the appropriate season. Actually I thought we were over the struggles but just this year Ryan held up a battle over wearing his sandals instead of shoes once fall hit. First we would get Ryan use to wearing pants, then we would add a long sleeve shirt. After a few days we would add a jacket, a hat, and lastly gloves. Though sometimes we went the winter without gloves.
To get Ryan use to the snow we got him to shovel snow  without touching it. Now he will touch it with waterproof gloves if you make him. But he still only touches it gingerly at best. Ryan has become the master of snowman building though. He loves it and will use his shovel to help build.
I remember when I was pregnant with my daughter I took Ryan sledding with a friend and her kids. Ryan refused to walk on the snow, even though he was wearing boots, but he loved sledding! He would laugh and smile the whole way down. So I gave in and carried him and the sled up the hill. No easy feat, I slipped several times.
Ryan asked me earlier this week to take him to the mountains so he could play in the snow. He has grown to really love it though I do not expect him to be in a snow fight anytime soon. Getting a sensory kid use to new experiences just takes time and a lot of patience. I found, that with Ryan at least, if we tried something enough times he would eventually grow to like it. The trick is getting them to try it.

Sunday, January 23, 2011

Baby on a plane (yes its worse then snakes on a plane)

Traveling on planes is just a part of everyday life for our family. Our family is divided between two different parts of the country, California and Massachusetts. Ryan has made so many plane flights in his short life that I have lost count. His picture in his passport was taken when he was 10 days old. Just days after leaving the hospital. Even though Ryan is a world class traveler, one of the most stressful experiences for me was bringing Ryan on the plane when he was younger. I would get physically sick about a week beforehand and would spend weeks planning what to take on my all important carry-on bag. Hoping that maybe bringing the right things for the plane would somehow make the trek easier.
It was never a matter of if Ryan would cry it was a matter of how long Ryan would cry for and when. All of my plane trips were rough but the hardest plane ride was when I flew back for my sister's wedding. Ryan was a few months away from turning two and trying to save money I put him on my lap instead of buying him a ticket. That was my first mistake. My plane flight was booked solid with no extra seats anywhere. I sat in the back of the plane because I figured that is where most people would expect the crying baby to be seated. That was mistake number two. Ryan was right in the middle of his door obsession. And what is in the back of the plane?...the bathroom. With, of course, a bathroom door. Well all Ryan saw was the door and he started screaming and trying to get away from my arms. As I was trying to keep him under control he was hitting and kicking the poor people sitting next to me. He even wiggled out of my arms twice while we were taxing to the runway. I had to unbuckle my seatbelt, get out of my seat, smile at the flight attendants (who were all glaring at me), retrieve him from the door, and carry him back to my seat. Later on in the flight during one of Ryan's tantrums a person actually turned around and started mouthing cuss words at me from across the aisles. I couldn't blame the other passengers for being upset, it just did not make my job any easier.
As Ryan got use to the plane flights, things got easier. I would feel guilty putting him through the flights in the beginning because it was obviously a hard thing for him. Now Ryan loves going on the plane and asks me at least once a week if we are going on a plane soon. Our last trip, just at Christmas time, Ryan even helped calm his little sister when she got mad because she had to sit in her seat for so long. He told her it was okay and she could walk around in a minute, just not right now. Ryan usually takes a while to get use to different situations but once he does he is all on board.

Monday, January 17, 2011

Chuckie the Mouse

Ryan stayed in from recess for a few minutes today because Chuckie Cheese was walking around outside. Now when Ryan told me this I started laughing. Ryan's love-hate relationship with Chuckie Cheese has been a long standing thing, since he made his first visit to Chuckie Cheese at the age of two. Ryan has always thought that Chuckie Cheese is fun but has been limited by his sensory problems.
Chuckie Cheese is a land of sensory overload for any child. The place is jammed packed with lights, sounds, smells, and people. The ultimate challenge for Ryan. The first time we went was for my niece's third birthday. Ryan spent the whole two hour party playing statue on my shoulder. His eyes were closed but he was not sleeping. He was not moving. I could tell he was not sleeping because his breathing was actually slower. He did not move for the entire party. His therapist told me he could not handle the environment so in a way his body just shut down. The moment we went through the doors towards our car, Ryan lifted his head and smiled really big. he looked at me and said "All Done" then got down and ran towards our car. Ryan never shut down again. It was the only time he did that and it scared me to death.
I made it my goal to get Ryan use to Chuckie Cheese. So next I brought him when we were the only ones in the whole establishment. Ryan screamed the minute we got there so I told him I had to use the bathroom and I forced him to come inside and wait a minute. Then we left. We repeated this every time we were near Chuckie Cheese. Eventually he stopped crying.
Then I branched out and had him play one game. It was ski ball. The whole time he would look frantically around him for any sign Chuckie the Mouse was around. Ryan has always been terrified of characters.
We slowly got him use to Chuckie Cheese. It took a long time and Ryan still can not calm down when we are there. He loves playing the arcade games but the whole time we are there he is on high alert. His eyes are bugged out and he frantically hurries through his games. The first time my Mom saw Ryan at Chuckie Cheese she laughed so hard because of Ryan's facial expressions.
I know that if Ryan did not have sensory processing disorder Chuckie Cheese would probably be his favorite place. I have always taken the philosophy that I wanted Ryan to not be left out of experiences because of his disorder so I have always forced him to do certain things. Whether this is the right path or not is almost impossible to tell. It is just the path I took. It has made me look like a horrible mother plenty of times. Such as staying with my screaming child through birthday parties, swim lessons, t-ball games, beach outings, movie theatres, and of course Chuckie Cheese. Ryan has grown to enjoy all of these things but it just took him time to get use to them.

Tuesday, January 11, 2011

Please Just Sleep

I am writing this after a long week of trying to get my kids to sleep at night. It amazes me that no matter how obviously tired they are, the thought of sleeping to them is about as pleasant as going to the dentist. For me I am usually more then happy to jump in the sack.
We got back a week ago from visiting family in Massachusetts for the holidays. We live in California. And ever since we have arrived home Ryan is holding on to the East coast time. Refusing to let it go. This morning Ryan was so tired he throw probably three tantrums before I could deliver him to school.
I have tried many things to help Ryan sleep. He is probably one of the only kids with black out shades hanging from his windows. Even though the room is almost pitch black he always rises about 5 minutes after the sun does, no matter what time he went to bed at the night before. We also have an alarm clock in his room and told him that he has to wait in his room until the alarm clock rings. We set the clock to 6 am and he still will run into my room the second he wakes up. I will escort him back to his room and tell him to wait for the clock to ring.
Sleeping has been made worse since Ryan and Kate started sharing a room together. The two of them egg each other on and they will giggle as they wake me up repeatedly throughout the night.
It does not seem to matter how many toys I take away, how many times I explain to them to stay in their room, and how loud my voice gets.
I woke up this morning and told my kids what a great job they did sleeping in this morning, they did not wake me up until 5:30am. But when I got downstairs my mother told me they were opening and closing doors last night at about 4 am. I guess I was just too tired to hear them. So both of my children have been overtired and crying most of today. I guess I am wondering if anyone has any suggestions? Any helpful tips that helped keep your children in their bedroom?

Sunday, January 9, 2011

Open Door

When Ryan plays he can get caught up in repetitive behavior. When he was younger and playing with his cars he would line them up in a perfect line. I don't think if he had a ruler it could have gotten any straighter. My husband would joke that he was playing car dealership. I would tell him that no one was buying the cars. And may God help you if you would try to move any of the cars out of their line. Ryan would start screaming until the car was put back in its exact location.
One of the oddest obsession Ryan had was with doors. This lasted for over a year and Ryan would just want to open and close doors. He would not walk through the door or pretend that someone was coming to visit him, he would just open and close, open and close, over and over again. One time I was curious to see how long he would open and close a door for so I just let him do it until he got bored. He finally gave up after an hour and a half. Also if there was a door and Ryan was not allowed to play with it he would have a major meltdown. This was always difficult because in public places there are doors everywhere. It was to the point that I could not take him to any stores and would have to wait for my husband to come home to do our grocery shopping.
Ryan's therapist informed me that the repetitive behavior was a calming mechanism for Ryan. He had a hard time processing information from his world so when he would get overwhelmed he would turn to something repetitive and familiar to calm himself down.
I had to learn to make Ryan's repetitive behavior functional in some way and try to limit it, so Ryan could find more acceptable ways to cope. So I got rid of most toys that had a door on it. We would let Ryan open the door to get into our house but then he had to stop. No matter how much he cried. We tried limiting going out in public until Ryan would stop crying to open the doors at home.
The part that would make me laugh was the way that Ryan would run frantically across the parking lot to get to the mother of all doors, the double sliding automatic ones that lead into the store. As soon as Ryan was out of the car seat he would run through the parking lot at top speed with no regard for his safety, and scream "opy door! opy door!" My sister still does an excellent impersonation of Ryan doing this.
Now that Ryan is five he does not even notice doors. He probably does not even now how important they were to him. His repetitive behavior has taken a new outlet lately. That of art.
Ryan will sit at the table for hours and draw the same pictures over and over again. Or he will write words on his white board. One time Ryan's cousins joined in on his art table and all five of them were furiously completing a whole stack of art projects. My sisters and I sat back and laughed and discussed how they would make the best office workers ever.
Ryan's play is a little different from other kids his same age but I do not worry about it too much. Ryan is having fun in his own way and that is all that matters.

Saturday, January 1, 2011

The Scarlet Letter A

Most children with autism have sensory processing disorder. But not all children who have sensory processing disorder have autism. My son is one of the latter ones. It took awhile to make sure that Ryan did not have autism though. It took a year of testing and waiting. A lot of waiting. There was a six month waiting list to get him tested in the first place. Then they tested him and wanted to see him in another six months to see how his social pragmatic skills were coming in.
The year that we were waiting for the final word, I was just trying not to panic. I knew that if Ryan had autism he would still be the same exact boy I brought into the clinic before his appointment. He would not magically change from the second before they told me he had autism to the second after they told me. He would still be my beautiful boy. I was just dealing with the idea of this label that would be put on Ryan. All I could think of was that all anyone would see when they looked at my son was a giant scarlet A on his chest. All his teachers would get a paper at the beginning of the year that said autism before they even got a chance to meet Ryan. I did not want my son to be judged.
As I look at Ryan now I am glad he does not have that label. He is doing great in school. Labels are both good and bad and I know I struggled with them for a long time. At one hand the label allows your kid to get the help they need. But on the other hand, a label can put your kid in a box. People can prejudge them and assume they know all about your kid before they even meet them.
The first person who really mentioned autism to me was Ryan's doctor. I was 9 months pregnant with my daughter (I had her exactly one week later) and the doctor sat us down and explained that they thought Ryan had autism and we should get him tested. Of course being about ready to pop I started crying. The doctor keep handing me tissues and asking me not to cry. A week later when she came to the hospital after I had Kate she looked like she wanted to hide in a closet when she saw me there. I just keep thinking about how crushing that label would be for Ryan. But I also knew that I had to find out and get him the help he needed to be successful in life.
The day of the appointments were the most nerve-wracking days of my life. I was sick to my stomach and literally shaking the whole 45 minute drive to the doctors office. I sat there as they asked Ryan questions and silently prayed he would answer them right. I cringed everytime he got one wrong. When they officially told me it was just sensory processing disorder and not autism I know I had a huge smile on my face. I remember feeling lightheaded because I was so happy. No mother wants to hear their kid has autism.