Rock Star

We have our difficult days with Ryan but a lot of the time Ryan cracks me up. For Christmas this year Ryan is desperate for a "pedal drum set" and I am desperate for him not to get one. He has been drawn to music since he was around one years old. He got his first play guitar for his second birthday. It was a wiggles guitar, his favorite show. He would play it none stop for hours every day. I thought he would get tired of it and move on to a different toy but he never did.
He got other guitars throughout the years and he still puts on shows in our living room. He will even watch music performances on TV and copy the performers moves. I remember one time I taped the finale of American Idol for him and the band Kiss was playing. He got so upset when they broke a guitar at the end of their song that he cried for awhile.
Ryan will still play with guitars but now he is interested in microphones, headsets, a keyboard, and lastly a drum set. In our house where Excedrin is considered a daily vitamin, I am not too thrilled of the drum set idea. But it is all Ryan can talk about so Santa has one for him under a sheet in our garage. The other day a flier came in for Toys R Us with drum sets in there. Ryan carried it around with him the entire day, petting the pictures of the drums and showing all his friends. Then he even took it to bed with him. He told me he is saving his allowance money for a drum set just in case Santa does not bring it to him.
Ryan's love for all things musical has always amused me. Here is a boy who will cover his ears and cry at the sound of a lawn mower but he will sing on the top of his lungs and play a mean pretend show. One of his therapists laughed one day and told me it would be something if Ryan grow up to be some sort of music star. I know that whatever Ryan chooses to do with his life, I will be there cheering the loudest for him.

Did I hear you right

A lot of the therapies for sensory processing disorder seem very strange. I remember when Ryan's therapist first introduced us to brushing Ryan with a surgical brush every three hours throughout the day. I wish I had a camera that day because I am sure the look on my face was priceless. I think I said something along the lines of, "You want me to brush my child, like his whole body, and this will help him how?" His OT laughed and explained how brushing him would give him sensory input which would allow his sensory system to relax.
Even though it was one of the oddest things I had heard, I was desperate to help Ryan and willing to try anything. So I brushed him. Ryan was not very fond of the brushing at first and I had to chase him through the house and pin him down to brush him. Soon enough he was asking for it though.
I never got use to brushing Ryan. I always felt embarrassed when I brushed him, especially in public. I did not notice if it made any difference to his behavior so we stopped doing it after a few weeks. It just was not working for our family.
Brushing was not the only odd therapy we tried. We tried compression vests, jumping on trampolines (which we purchased for Christmas), and gluten free casein free diets. Most of these therapies did not work for us though we did find some very helpful therapies through our therapists. I do not know if the motivation to try all these therapies comes more from guilt or desperation. It is probably a combination of both. I know that with Ryan I felt an overwhelming urge that it was my responsibility to "fix" him. I felt that the buck stopped at me and if Ryan was not eating healthy or making friends that it was my fault and I needed to fix it.
After living with the diagnoses for a few years I now know that it is not my fault and it is okay if Ryan does not act like the other kids or that he does things just right. I am here to help him on his journey in life but he decides the journey.

Look Into My Eyes

One of the first things we worked on was getting Ryan to make eye contact. I had honestly never noticed that Ryan avoided looking into my eyes. Before it became a goal, Ryan would generally roam around our little apartment and then when he wanted something he would run over to it and point. This was usually followed by some whining. If you could not figure out what he wanted, in about 2 seconds, then the screaming started.

The therapist told me to wait until Ryan would give me eye contact and then give him what he wanted. To not say anything and just look at him until he looked at my face. Once Ryan looked at my face then I was suppose to jump into helpful mode. As a psychology major I quickly recognized the positive reinforcement technique and it was one we would repeat over and over again for several behaviors we were trying to help Ryan with.

So the first time Ryan ran over to the fridge, pointed at the fridge and whined (which was his way of asking for juice), I followed him into the kichen but ignored him. The two seconds went by and Ryan started screaming. Instead of looking at me though, Ryan throw himself on the floor and started banging his head againist our tile. I continued to ignore him (trust me this is very hard to do when your child is hurting himself). Eventually Ryan looked up at me, I think he was wondering why I was not rushing over there like I usually did. The second he looked at me I said, "Oh you want some juice," and I ran over to the fridge and gave it to him.

Luckly for me, Ryan caught on really quick and by the end of the week he was looking at me as he whined and pointed to the fridge. I felt very happy though. It was the first of many hurdles we crossed, and one of the easiest, but I knew we were on our way in the right direction. I felt confident that night that Ryan was going to be all right.

Our New "Friends"

When Ryan began receiving services from early intervention we were thrown into a whole new world that was very confusing and full of new "friends". Ryan was receiving occupational therapy (OT), speech therapy, and group therapy (where they worked on Ryan's social skills). But in Ryan's eyes he just had all these new friends to play with. Just four adults who wanted to do nothing but play with him. For OT and speech they would come over to our house with toys and play with Ryan while teaching him different things. During group we went to the center and there were six or seven kids in his group with two therapists and they would try to get the children to interact with each other. This was harder then it seems when you have several children with social problems.

We got really close to our therapists. I think it is impossible not to get close to them when they get to know all the intimate details of your life. At first it feels a bit like having super nanny in your house week after week because they are constantly telling you what you are doing wrong and how you can help your child's development along. We actually got so close to our OT that I sent her Christmas cards and a baby announcement after I had Kate. The therapists got to know everything about our lives. Its part of their job.

What the hell does "sensory issues" mean?

The therapists told me that Ryan had sensory issues. Early intervention is not allowed to diagnose children, they just point you in the right direction. I had no idea what sensory issues were. So like anyone in our day and age, I turned to the Internet for understanding. I googled it and many different websites came up. I spent hours after Ryan went to bed looking it up on the Internet. In this research I came across sensory processing disorder. I remember reading the description and just staring at the computer. It described Ryan pretty good. Overall the descriptions of sensory processing disorder were very confusing. I had a hard time understanding what it meant for my son. Most of the descriptions state that the child has trouble processing information from their senses so they have trouble learning. These descriptions were too vague for me. I later found out that they are vague because there are six different types of sensory processing disorder. The type Ryan had was sensory modulation disorder- sensory over responsivity (try saying that ten times fast). He mainly was affected in the senses of tactile, motion, and sounds. After looking everything up I still did not understand how Ryan saw the World, how he felt everyday. I knew that it was hard for him to sit and watch fireworks but why was it hard for him? What was going on.

Finally after Ryan had started seeing his new OT friend, I asked her. She was the first one that described it to me so it could make sense. She told me that to imagine I was driving and a car was coming straight at me. She told me how all of our senses go in slow motion and everything is intensified in a life or death situation. She then told me that Ryan feels that way 24 hours a day. That all of his senses are intensified. Because his brain is using so much power to process his senses, he has trouble learning other things. Then his "meltdowns", as she referred to his two hour tantrums, was when he was in overload at all the information coming at him. After she told me that it started to make sense. Ryan's brain was overloaded and that was why it was hard for him to do certain things. His repetitive behavior helped calm his brain down. And that was why he would do things over and over and over again.

Also with research I found the close link between autism and sensory processing disorder. I found out that most kids with autism have sensory processing disorder but not all kids who have sensory processing disorder have autism. This was the most worrisome news I found. Autism had been getting a lot of attention lately and I knew a lot about it. I worried that Ryan's problems did not stop with sensory issues. The best piece of news I found out was that most kids learn to live with this disorder by the time they are seven. The disorder does not go away, Ryan will always view the world this way, but he will learn to live with it so he can be a productive member in society.

At the time I hoped that Ryan only did have sensory processing disorder. I figured if I could get through these couple of years then we would be all set.

Ummmm, I think there is something wrong with your kid...

Ryan was my first baby. Because he was my first I did not notice that things were running a little behind when he was a baby. We were practically isolated in Germany with little friends and no family around. I was an avid reader of "What to Expect the First Year". They made developmental milestones seem like a minor detail in the book so I never got too worried. When Ryan would change into a different month I would grab the book and pore over the milestone page. Ryan was usually a month or two behind what the book said but he always seemed to get it eventually. In my mind Ryan was the most perfect baby to walk on this planet.

As any new mother all my conversations revolved around Ryan. My house was plastered with pictures of Ryan. If they made a Ryan wallpaper it would have been up in my living room. My son was amazing at everything he did. His laugh was cuter then all the other babies, his smile was bigger than everyone elses. Ryan was my entire universe. Now that I have two children and I come across new parents at the park, I always find their obsession with their children annoying. But I remember that I was just as bad if not worse.
Anyways in my eyes there was nothing wrong with Ryan and God help anyone who said otherwise.

When Ryan was one we got out of the Air Force and moved in with my parents during the transition. My step-dad Jeff was the first one who got the nerve to tell me. He told me one day that he thought I should ask the doctor about Ryan's behaviors because he thought Ryan was showing early signs of autism. At the time I was so angry. How dare Jeff tells me that something is wrong with my perfect baby. I didn't care that Jeff was a teacher for 30 years, that Ryan seemed to be behind his same aged cousins. I was just upset that someone would suggest that Ryan's mind was not working correctly.

Now as I look back I realize how much guts that took Jeff to tell me. And he was right. Ryan had some odd behaviors. He was not pulling up, crawling, or babbling. He was screaming loud and was often upset. I promised them I would get him checked out. So I brought Ryan to the doctors and they told me not to worry. Lets just wait and see. If it wasn't for the promise I made I would have waited but I decided to call early intervention for an evaluation.

They evaluated him when he was a year and a half. Before they came over I was nervous that they would think I was an overly nervous mother. I did not believe anything could be wrong with my son. The speech therapist came first and I told her that I wasn't that worried anymore because Ryan had just said his first word a few days ago, it was "hi". She looked at me and told me it was better to be safe then sorry.
After the evaluation they turned to me and told me that Ryan was behind on several developmental milestones. Some of his delays were pretty bad. He was not giving eye contact, barely talking, had just learned to walk, and had a diet of maybe 5 things. He also throw major tantrums that would last in the hour to two hour range. At this time he was biting me whenever he got mad and I had bruises up and down my whole arm. He was also banging his head against our tile floors and never seemed to notice the pain it would cause him. He played by lining toys up. Instead of making  the toy car drive somewhere he would line all of them in a straight line and get very upset if someone moved them. But at the time I could not even discuss this with them. They got time to say Ryan was behind, he qualified for services and something about sensory issues. Then I quickly got them out of my house and cried. I put on Ryan's favorite show and I just hugged him and told him how much I loved him and everything would be okay. I cried for most of the day and night. It felt like my world had been turned upside down.

My Little Foghorn

Ryan is loud. Really loud. He has always been loud since he was a newborn. "A good set of lungs," as the polite people would say. As an infant he would cry for hours a day. At the time we did not understand why our baby seemed so unhappy with the world. Now we know that things were too bright, too loud, too rough for him. But at the time we had no idea our son viewed the world differently then we did.
Ryan was colicky and would cry for hours, usually between 4pm and 9pm nightly until he was around six months old. It seemed that very few things seemed to soothe him. Car rides would usually put him to sleep so we would drive him around and then let him sleep in his car seat for the night. He did not like his crib, pack n play, or bassinet. Even in the hospital as a newborn he did not want to sleep in his little roll around bed.
He also had a loud, deafening scream. Every now and then he would scream a high pitch scream. To this day I have never heard anything like it. It was so loud that if I was holding him while he screamed my hearing would become muffled for a few minutes afterwards, like I was swimming underwater. It would make anyone nearby stop dead in their tracks.
As a new mother still waking up in the middle of the night, his nightly screaming was enough to frustrate me on several occasions. I learned a few tricks to help me through the long days.
1. While he was crying I would turn up the music and dance with him around our living room. It was stress relief for me and I found different motions that Ryan seemed to like. I also found that he liked when I patted his back while swaying around the room. Also when I was singing along to my favorite songs it helped take my mind off of the crying.
2. I started movie nights. Once a week I would leave Ryan with my husband and go to the movies by myself. Most of my friends had kids but I did not mind going to the movies alone. I would show up right before the movie started and you never talk to people during a movie anyways. It would refresh me and allow me some much needed time out of the house. My husband also gained respect for what I did with Ryan day after long day. He was able to build his own relationship with him.
3. If I felt myself starting to get annoyed at Ryan I would put him in his crib, shut the door, go downstairs and watch a Friends episode (a show that gets me to laugh no matter how many times I have seen it) and then I would go back upstairs and get Ryan out of his crib, usually still screaming, and try to calm him down again. At the beginning I felt so guilty for putting Ryan in his crib. I did not want to tell anyone about it because I felt like a bad mother. But now as I look back I am glad that I did it because it allowed me to get a fresh start on the problem and keep my emotions under control.
Ryan is still loud and crys but nothing like it used to be. I have not heard his deafening scream in over a year and Ryan is using his words to express himself more and more everyday. As I look back I do not know how I made it through those first months. I know it all feels like a blur...