Today was the Autism Awareness day at the school where I work. There were many kids that wore blue in honor of Autism Awareness. Many people hate the phrase Autism Awareness but I don’t. You see, I teach students all day long that have never even heard the word autism. I was very pleased when I received an email saying that they were going to show a video during lunch today. The video was of a young man with Asperger’s, speaking about autism and giving 10 important things about it that he thought people should know. The students watched and listened to that video. In addition to the video shown at lunch, I chose to play a short video for my students. Today was the day that I told all of my students about my own son and asked them to really pay attention to the video. After each class viewed it, we had a question and answer session. My students were interested in knowing more about it. A few students raised their hands to tell about a friend or relative that also had autism. By the end of the day several students came up to me and thanked me for taking the time to show the video, answer questions, and tell about my own life. It was a wonderful thing (especially if you know the behavior of a typical middle school kid lol). My hope is that they will never forget today and will move from awareness to true acceptance of their peers with autism.
Short video I showed to my students today.
Autism parents know that just because our kids line up toys or like things in a certain way, it doesn’t mean that they are neat most of the time. So I found it quite funny when MJ showed me his videos while we were putting away his laundry. He opened a drawer and said “Mommy look! I put my DVD’s together.” I looked in his drawer and he had all of his “Wow Wow Wubbzy” and all of his “Yo Gabba Gabba” videos all neatly organized! I was in shock. He has never done anything like that before! I laughed and laughed and told him that he did a great job organizing his videos. Of course right after that he made a complete mess on the floor with some of his other toys lol…Go Figure! Anyhow I am quite happy with this small step 🙂
A few weeks ago I wrote a post entitled “Disappointed”. It was about the big bunch of “nothingness” that was going on at my school regarding “World Autism Awareness Day”. Well, as I was walking into school today, I saw this sign:
I was actually shocked and had to stop to take this picture. Had they listened to me when I complained? Did someone realize that the school didn’t plan anything this month? Did they see the disgusted look on my face? Whatever the reason, I am glad that they are doing something. I know it’s late in the month. I know it’s not enough, but I am grateful that they are at least recognizing it. As I have said before I am new at the school this year. Next year I will make sure that much more is done to bring awareness and acceptance. For now, my job is to find out who is taking these donations and where they will be sending the money!
Yesterday at our local civic center, there was an event called Autism Swims. This event was for kids with autism to come and receive free water safety and swim lessons. There was also the local fire dept. and police officers in attendance as well as the autism society and other related vendors. It was a really fun event and I only wish that it happened more than once a year. We have been trying to teach MJ to swim for over 2 years now. We even had him in private one-on-one lessons and it was actually horrible for him. I am really grateful for the experiences that MJ had with the wonderful people at this event. I found it very interesting that a middle school student thought of creating this event and eventually made it finally happen. MJ saw it on the calendar in our kitchen and he was thrilled to be doing something special just for him…It was a great day!
Waiting for the event to begin.
Pic with a local fire fighter.
Swim lesson from an instructor.
Doing the “tango” 🙂
We can’t wait for next year!
MJ’s IEP meeting was yesterday. I am so happy to report that I had no reason to be as nervous as I was! The ESE specialist, his teacher, speech therapist, and occupational therapist were all in attendance. They had nothing but great things to say about his progress. It was just that….PROGRESS! They were able to compare where he was last year to where he is now. I didn’t have to raise my voice or quote some line from the “parents rights” handbook. I expressed everything that I wanted in his IEP and there were no hassles at all. We were in agreement with his goals for the year, his speech time and OT time. MJ is transitioning to middle school and as I have stated before, I am
nervous terrified about this “new start”. I have taught middle school for over 16 years. I realize that I am probably more nervous than the “normal” parent. I see how mean kids can be EVERY DAY. I have prevented several autistic students from being bullied in the hallways. Who do you think I am thinking about every time it happens? MJ, MJ, MJ! How can I make sure he is in an environment where he is safe and protected from potential bullies? For me and my husband, safety is number 1; education is number 2. I have done my research on private schools that are accessible within my area. One school was so pathetic. As I took a tour of the school I noticed that the students were seated but not working. I mean they didn’t even have a book, paper, or a pencil on their desks! I walked into 6 classrooms and only 1 teacher was actively teaching. It was horrible. The worst thing is that this is a private school for kids with autism! I was so disappointed after that visit. I visited another school and in comparison they weren’t too bad but the principal had a difficult time answering my questions and contradicted himself several times. I researched public schools and asked a close friend about one particular public school. Based on her recommendation I visited the school. It was great. I had the opportunity to sit in the classrooms and observe the teachers. I met the ESE specialist, speech therapist and the teacher’s aide. All of my questions were answered and I felt comfortable when I left. We have decided that we will be placing him in that public school. All I can do now is prepare him as best as I can for this transition. I will have to make sure that he tours the school, meets his teacher, and knows where his classroom is before school starts. Other than that I will be praying for his protection while he makes this transition into middle school life…Lord help me!
This was MJ at 3 years old when he was first diagnosed. He was having fun completing a sorting activity in his special needs Pre-K. He has always had that smile and has always loved school.
Yep you guessed it…He needed TWO therapists to assist him at the same time. This pic is from 2008 (4 years old). He needed one person to basically hold him down and one therapist to actually do the activity with him. During those days he would yell, scream, and cry during the first 20 minutes of therapy.
Some people say “it’s not good to look back”, but in this case I am glad that I do. Looking back is really helping me to see how far he has truly come. 🙂
It is exhilarating nowadays to actually be able to dine out as a family. When MJ was between 3-7 1/2 years old it was near impossible to do. I remember one specific day that we decided to give it a try. We went to “Johnny Carino’s” early one evening right after we picked the kids up from school. We knew the restaurant would not be crowded and we already knew what we would order. When we picked him up he seemed calm and happy. We walked into the restaurant and sat down. I was very nervous but tried my best to hide it. For the first 7 minutes everything was great. We sat, ordered, and got our drinks right away. However after 7 minutes MJ:
went underneath the table
began running back and forth down the aisle
was yelling loudly
and was banging on the table.
Oh, the Horror lol (I can laugh about it now)!
I was so happy that there weren’t many people in there at the time. My husband called our waiter and he immediately asked for the check and doggie bags. The idea of not being able to “get out” was very difficult for us. You feel trapped, isolated, and frustrated. None of the other people we knew had this issue…It was just US. While everyone was able to go out with their families, WE WEREN’T. The drive-thru was our best friend! Do you know how guilty we felt taking only Morgan places when MJ was in school? We didn’t want her to miss out on some experiences because of MJ but at the same time we felt guilty doing it. Due to the babysitting situation I previously wrote about (April 4th post), many times my husband and I would just go out separately in order to get a break. We both hated that but what other choice did we have. My husband never stopped trying to take MJ out. One day he took MJ to KFC. He sent me a pic of my son sitting down nicely, enjoying his meal, and calm. I was so excited! He continued to do “mini restaurant visits” like that with MJ more often. It was so amazing when we all were able to go to lunch at Cracker Barrel. Even now at 10 years old, going out is not without incident. We just plan before we go and we make sure he has his Nabi tablet, portable DVD player, or at the very least, a charged iPhone. MJ still has a limit of about 45-60 minutes at a restaurant but at least we are able to go out as a family now on occasion…It’s one of those things that I appreciate doing so much now. Now if I could just teach him to not try to lick the salt and pepper shakers, and not burp so loudly, this world will be a better place! 🙂
I used to use something like this to help MJ choose what he wanted when he was not as verbal.
Photo courtesy of Pinterest.
I have researched bed-wetting off and on for years. The bottom line is that no one really knows why kids wet the bed. MJ is almost 11 and still wets the bed on some nights. I toss back and forth the notion of, “Is this autism or is this his family history”? I must say that for the last 6 months his bed-wetting has decreased. As a matter of fact MJ recently went 13 days in a row without wetting the bed!!! Just as I was about to break out the party balloons, he wet the bed on day 14. I believe that MJ is now aware of the fact that it is not normal. He notices that his sister does not wet the bed. He says things like “I tried not to wet the bed mommy”. We never make him feel guilty and I have to credit my husband for teaching MJ to get up when he needs to use the bathroom. MJ now gets up (on his own) sometimes in the early morning hours and uses the bathroom but he still wets the bed a few nights per week. I am optimistic that his bed-wetting will stop soon but I will continue researching to find out what else we can do.
Possible chart I may use…I’m still not sure about it yet.
I have always gone to church. In fact I was raised in the church. My family went to church every Sunday. Of course when MJ was born, I figured that I would be taking him to church as well. Before MJ’s diagnosis, I could only stay in the church service for about 30 minutes. He was a LOUD baby/toddler and after the worship music was played he would be extremely loud to the point that everyone would be looking at me. While in Georgia, I used the daycare at the church when I could. It was very difficult because he would cry at the top of his lungs when I would leave him. Many times I would be called from the daycare to come and get him (sigh). After MJ’s diagnosis we were a part of a different church. I remember talking with the lead director of the children’s church. I was so pleased to know that she too had a special needs son and understood “the struggle”. So the next Sunday I took MJ to the children’s church. After about 30 minutes I was called out to go back to the children’s church. When I got there the director (the same woman I spoke with) told me that MJ was turning the lights off and on and wouldn’t stop. I looked at her strangely and said “was he doing anything else”; Did you give him the toys in the bag to distract him?” I looked at my little boy, gave him a toy and walked out of that church. I NEVER WENT BACK. If a special needs mom couldn’t handle that simple scenario then I was not interested in returning. I decided that until MJ was ready to go, I would simply have to have church at home. Thank goodness for television programs and being able to go to church online. That is what I had to do from the time he was three until he turned nine years old. When I made that decision I had a few people who did not agree and actually made negative remarks about it. I had to think to myself, “they love me and wouldn’t purposely hurt me by saying these things”. Those people were obviously ignorant to the fact that MJ was unable to sit still in a church service. He would be a mixture of the Roadrunner and a music concert…Fast and Loud! I’m not talking about a few loud moments. I am talking about the fact that MJ would yell out consistently and be disruptive throughout the service. I was completely unable to concentrate and listen to anything that was going on. Instead of leaving happy and spiritually full, I would leave tired and upset. When we moved to Florida a few years ago we began going to a new church. I was so happy to hear that they had a children’s church. I prayed and prayed and prayed and tried to prepare MJ for that fact that he was going to church. I spoke to him about it, showed him pictures, and even read a bible story with him. It helped that my daughter was excited about it. When I took him, I explained that he has autism to a few people and let them know that I would be sitting in the back of the church in the event that they needed to come and get me. I dropped them off and they looked happy. As I sat down in church I found myself looking back every 10 minutes expecting someone to come and get me…30 minutes went by…Then 60 minutes went by…90 minutes went by and I looked up, smiled, and thanked God. When I returned to get them, MJ was excited to show me what he did in children’s church. I asked him if he enjoyed himself and he said, “yes mommy”. It was a great feeling to know that he was finally able to attend church again. I attend church with MJ as much as I can. I don’t go when I know service will be longer and I very rarely go when there is no children’s church. I really am against him sitting in service for two hours when he can’t understand the sermon and is literally in pain because of how loud everything is (even with ear plugs). I do my best to teach him what I can and infuse our beliefs into his everyday life. My hope is that more churches have special needs programs for kids on Sundays or at least have caring and knowledgeable individuals that can accommodate more special needs kids.
MJ’s picture done at church today. That is supposed to be him playing basketball:-)
Recently my son has begun to wander. Sadly enough, he thinks it’s funny and does not understand how dangerous it is. First it started small…He would walk down the aisle in the grocery store instead of staying near me. I would call to him to “stay with mommy” and would give him a stern, serious look. It seemed to work as he would walk back and remain close to me for the rest of the time in the grocery store. A few weeks later, while in another store, he walked one aisle over. Then he walked two aisles over. He ignored my calls this time and I ended up leaving the store because I could not focus on getting the things I needed if he continued to do that (I only have about a 20-30 min timeframe with him). In addition to watching him, I had to also watch my daughter and prevent her from following her brother. The scariest moment for me came when we took our first trip to Disney World (will post about that later). After getting off a particular ride, MJ thought it would be funny to follow another family off of the ride. We all got off of the ride and looked around and though it was only about 8 seconds, we did not see him! My heart sank to my feet and I yelled out his name several times. There he was following another family and laughing! Laughing!??? We sat down and spoke to him about what he did right then and there. While we hoped that he understood everything that we were saying, we were not sure that he did (he was still smiling). About three weeks ago his teacher sent a note home saying that he wandered away during recess. He was hiding behind a tree away from where his classmates were playing. She reprimanded him and he didn’t like it one bit but I am glad she addressed it with him. A few times a year I hear about special needs kids that wander off to never be found or end up being found dead. I thought I would never have to worry about this. MJ has always been a homebody and LOVES staying at home. He used to always stay near us when out and about. I am praying that the wandering behavior stops completely but right now we are on our guard and are trying to teach him how to stay safe!