I have been searching for several months for all of Daniel’s medical records and evaluations that I put in a “safe” place, that I would remember but I completely forgot. I have gone back and forth searching the entire house, garage, under the car, up on the roof everywhere except on top of my storage file box, hidden in my closet, with books and photo albums on top of them. Sometimes I really do not know what I am thinking when I put things in a “safe” place. I happened to find them the other day while looking for something else I put in a “safe” place.
I am so relieved to have found these papers, I also found some of the journals that I kept of Daniel.
I need these papers to go over and evaluate where he has improved and see what things we should focus on now. Daniel and Ariel are going to have their progress evaluations for school soon and I want to be prepared way ahead of time. I will need these evaluations for Daniel as we sit with the evaluating teacher for homeschool, so I was freaking out that I could not find them. Since I was now able to breathe about that and move on with my preparations, I decided to look through the journals and his first evaluation.
Here are some of the things I had written down:
9/30/07 Daniel had a rough day. He fought me all through breakfast. He got very upset at church and we had to take him outside, he was happier while outside. When we got home he began to throw things and get progressively angry. He got very angry with me during lunch. The rest of the day the same. He can’t talk so I am not sure what upset him. I believe it was some sort of sensory issue but I cannot determine what it was. Pay closer attention next time.
10/05/07 I woke Daniel up today. He sat in the same room with Ariel and Joshua all day. He seemed very happy today. He got fussy at mealtimes but he did touch my arm and legs while I fed him. He had a good day, but was unable to go to sleep, finally fell asleep around 1am. It was a nice day.
10/06/07 Daniel peed all over himself in his sleep and woke up very angry. He got upset with me, Ariel, and Joshua, I am not sure why. He had a bottle in his mouth all day, whenever I tried to take it from him he would get aggressive and scream.
10/07/07 Daniel had a great day. I put on music and we all danced together for quite a while. He had a hard time during meals. Later in the day he sat in his room playing with his gears and a music mirror toys. He was able to go to sleep.
As I went through, there were so many days that I had written that he was in his room alone, he was angry, he was doing self harm, he threw things at me, he got angry at his food. He went through a period of time when he was doing “poo art”all over his bedroom, Ariel’s bedroom and the hallway. We had to feed him nothing but mushy food, covered in cottage cheese or something white. He would only eat white foods. We were not gluten-free at this time and pretty much year after year I have written down something about Daniel being upset during and after meal times. That has changed since we changed our diet.
I have this entry as a general observation 10/21/07:
Daniel mainly plays alone with particular toys, they usually play music or make noise. He is fixated to the point of obsession with ceiling fans and spinning toys. He will turn on every ceiling fan in the house and if we do not have them on he will become very upset. When we have gone to people’s houses the first thing he does is turn on their ceiling fans and watch them and try to play the on/off game.
He beats on things repeatedly. He makes a game of turning the ceiling fan on/off and then beating on something as it spins from faster to slower. He also does this with turning lights on/off.
He loves music, especially heavy drums. He dances all the time, rocking back and forth.
He will not feed himself or drink from a cup.
He will not eat anything hard or crunchy.
He will not put anything in his mouth, just started to touch mouth with fingers.
Does not hug or kiss
Avoids touching certain textures, foods, liquids on the table.
He has a toy or bottle at all times.
Stands still or moves against the traffic in group activities.
Shows little or no reaction to pain.
Shows behavior that seems difficult when its a response to tactile stimuli.
Those were for sensory issues I assume.
I did not label my entries with a title for certain list entries, I wish I would have done that. He received a label from the OT “Motor Disturbance and Developmental Delay” on January 15, 2008. “Currently Fine Motor Skills, using the HELP, are at the developmental level of : ~24 month old. Daniel was 3 yrs old and 2 months during this evaluation. Patient’s fine motor delays are partially due to poor attention to task and tactile sensitivities”. She also had a three paragraph description of his sensory issues. His gross motor skills were considered “fair”. After looking at the short-term goals and long-term goals for that year, I am happy that he has achieved them all and beyond.
We did not get to go back for formal progressive evaluations because of our insurance problems.
I did see his OT last year at an autism symposium and most likely will see her this year. She told me to come see her unofficially so she can see for herself how Daniel is doing. I think I will have to plan that, she is an amazing woman and I am so glad that we got her from the beginning. In my post A Thankful Year I say that I am thankful for learning about the autism spectrum. Many people could misunderstand what I mean by that. I am not thankful for the hard things that Daniel had and does go through, the struggles that Daniel has, my personal struggles and facing my denial and confusion about all of it.
I am thankful that I have information.
I am thankful that there are so many resources and people who have already gone through life learning lessons with autism. I thankful that I can learn, grow, discover ways to help Daniel and the rest of us be able to live in this world better. I am thankful that the knowledge has given me awareness and understanding. I am thankful that I understand about how other people’s experience with autism is different and I can learn something from them or possibly help them understand it differently too.
Daniel has not miraculously stopped everything and now our life is great.
In the past two years Daniel has gotten progressively more verbal and that has changed our world. In the past 6 months his language has increased tremendously and that has made it possible for us to know what Daniel needs, wants, is happy about or angry about. When he is upset he does shut down at times but he is trying to talk when he can tell us. At times I just have to let him go and then go back and try to find a way to help. In Nov. 2009 Daniel was still drinking from a bottle and would not take it out all day except or meals. I wrote about that here The Bottle-My Nemesis!.
Getting rid of the bottle helped him find his voice.
There are just too many things to write about and at times I am too close to see the progress that Daniel has made. When I write about some of these things it helps me to step back and take a big picture look to see everything that is going on. I tend to be happy for a moment at his accomplishments but then jump right to the next thing that we should work on. Finding these papers will help me put things in perspective and actually help me see with clarity. I can’t wait for the day that Daniel can read all of this stuff and see all that he did.
I hope it gives him a sense of accomplishment and understanding that he doesn’t do things the way others do and that he doesn’t have to.