Friday, March 15, 2013

Meeting the Newest Teacher

  The time had come for us to meet Mikey's new teacher. I think I speak for most of the parents in that class when I say we were anxious and concerned. After losing two teachers over a short period of time, I know I was beginning to wonder if this program was ever a really well-thought out plan. I didn't believe that this school really had any concept of what they had taken on, and after dealing with the last teacher, I was even more skeptical.
   How relieved I was after meeting her! This person seemed genuine, she really wanted to do a great job, and she wanted to help the kids to learn as much as possible. She always greeted the class with a huge smile on her face,and never seemed irritated by them. Believe me when I tell you that a job is special education is not easy. It requires a tremendous amount of patience,compassion and kindness. Fortunately, this teacher had all of the above. I was filled with a sense of relief as well as a new found hope for the future.
   We all worked well together, and I always appreciated that she had a good sense of humor about it all. After all, if you were not able to laugh at some of the things that went on, you might as well have called it quits. We always seemed to be on the same page, and Mikey liked her as well. That was very important....more so than whatever my feelings were. He also had a great lady working with him as his aide. She took very good care of him, and showed such a genuine concern. I finally felt comfortable again knowing he was in good hands.
   All in all, the year went well. Mikey seemed to stay on task, he seemed happy, and the classsroom was once again a happy, productive place. The kind of place that it should have been all along. The kids spent the year learning to read, working on math problems and learning about money, working on art projects, and having fun at recess and on field day.Things were good...and sometimes that is all that was needed. We didn't need everything to be perfect, for that wasn't even a possibility, but when things were good, it was much better than when things were bad. For us, it was a time of peace, albeit a short one. Unfortunately for us, things were not about to stay so calm and peaceful. It would not be long before some behaviors crept back in and dealing with school administrators became more of a battle than a help.

Thursday, March 14, 2013

Midnight Madness

   As any parent can tell you, one of the most difficult things about parenting can be the lack of sleep. When you first bring home a newborn, getting up every 2-4 hours can really take its toll. I remember with all four of my children,they never slept well as infants, then for some miraculous reason, they hit age two,and slept like rocks. Considering the fact that my oldest is seven years older than my youngest, meant that at one point we had 4 kids  seven and under.Suffice it to say, we spent many nights awake, and weeks on end running on interrupted sleep.Not enjoyable. However, once we had everyone past age two, we enjoyed the luxury of being able to sleep all night,something we had missed for a long time.
   Mikey had usually slept pretty well. When he was very young, he would fidget a lot in his sleep,turning this way and that, but as he grew older, that subsided. Then, what I like to refer to as "Midnight Madness" hit our home.
  As I have mentioned in previous posts, Mikey was genuinely a happy kid.Always laughing and smiling. We noticed that as he got older, he developed somewhat of an obnoxious laugh. Not his typical giggling, but rather a loud, high pitched ,never-ending laugh. What was even more interesting was that he seemed to do it on purpose in order to annoy his brothers. Now, at first, I have to admit,that I thought it was funny. Just knowing that he was actually behaving mischieviously warmed my heart. He knew how to aggravate his brothers, and enjoyed doing us, it was refreshing to see such a "typical" behavior from him. Lord knows his brothers drove him crazy all of the time ,so I guess he felt the need to pay them back, and it was kind of funny.....for a little while.
   Every so often, in the middle of the night ,when our house was super quite and everyone was sleeping,Mikey would wake up. Instead of just falling back asleep, he would start to giggle. At first, they were quiet giggles, very sweet actually, and even though it woke me up,it would make me smile. I was happy to know that whatever he was thinking about made him very happy. Slowly but surely, the soft giggles turned into full-blown cackling at the top of his lungs. Not very cute anymore. Yet,while I still couldn't get mad at him,  his brothers did.They would yell from their rooms telling him to lay down, be quiet ,etc. It drove them crazy,and understandably so. After all, everyone was trying to sleep, and with that laughter so loud, it was impossible to do so. However, the more they yelled,the louder he laughed.
   When this did happen, I would often try to take him downstairs to watch a little tv, and hope that his brothers would be able to get some rest, but was often times not very successful. It seemed as though his main mission was to wake everyone up, as if he was having a little party. It was indeed annoying, yet I still found myself unable to get angry with him. He was happy, and as the parent of a child with autism, that was what was important to me. Of course, the boys getting their rest was important as well, so again, the struggle to keep everyone happy continued.
  Fortunately, these episodes were few and far between, but they have never stopped completely. Mikey still does this ,and actually did it a few nights ago. It makes him happy,and the rest of us very sleepy. Yet, we consider ourselves lucky because we know many families with autism who not only have kids who hardly ever sleep, but also kids who try to leave their homes at night. We will gladly take the laughter,as loud as it is, and count our blessings.

Monday, March 11, 2013


    As parents, we continued to do our best to address Mikey's needs each day with great determination. However, we also were the parents of three other children. While the boys had always been understanding and cooperative for the most part, we did have many moments of difficulty as well. What many people fail to realize is that it is not necessarily easy to be the sibling of a person with special needs. Autism affects the entire family, not just one child and the parents.
   There have been many times throughout their short lives where our boys have had to make sacrifices for their brother. Of course, none of these sacrifices have been too serious, but when you are a little kid, they can seem monumental. Many times, we have had to cut pool time, park time, or beach time short because Mikey was having a tantrum. There have been times when one or more of the boys have been late for parties or other events because Mikey may not have been cooperating.Times, when as much as we wanted to, we were unable to listen to a story they were dying to tell. I have already shared the story of Mike missing Chris' communion because of difficulties with Mikey. I have had to miss some of my boys sporting events,plays  or extra-curricular activities due to situations caused by autism. Again, nothing (at least I hope not), that will scar the boys for life, but little inconveniences here and there.
   Then there are always the questions from friends.."what's up with your brother?" " Can he speak,is he okay?"  All well meaning questions, but forever present. Not to mention the public stares. Yet, through it all, our boys have proven to us time and time again how amazing they are. They understand that we ,as a family, are not on the easiest of journeys, and that is not the fault of anyone. It is just our life. Crazy at times, difficult at times, and yet sometimes funny as hell.
   I often am amazed at their relationships. They will fight with each other to no end,yet always have each other's back. They do not discriminate either...they will fight with Mikey too, because to them, he is just one of the boys. I cannot tell you how many times I have been out with both Mikey and my son Timmy, and Timmy will see someone staring, or looking at us funny. He will look at them and say" what are you looking at? He has autism, everything is okay here, turn around." I know it sounds rude, but to hear it from a 10 or eleven year old speaking on his brother's behalf makes me smile.
   It may not sound like a big deal to some people, but when you have to tell your kids that they can't go on the ride they have been waiting for, or get the ice-cream they have been asking for all day because their brother suddenly has a problem,  it is unfair. Yet, life is not fair, so we did what we could. We learned that sometimes we need to go out with each child or just a few of them so that they can indeed do something they have been looking forward to ,and see it through. We have also worked very hard to try to teach Mikey how to wait patiently,if needed, and were sometimes successful. Like everything else, it was all a work in progress.
    As the boys have grown older, they obviously have a better understanding of things, and Mikey has become more patient and cooperative. That is not to say that they do not still get upset when these situations arise, but they are only children. I think it is natural and to be expected. They have been through so much more than many of their friends. Yet, it has not only been negative. They were thrilled to have special passes at Disney to go on every ride quickly, courtesy of Mikey.
   More importantly, this experience has taught my children to be tolerant....of not only their brother, but of others as well. They have a genuine compassion for those in need, those with disabilities, and those who are easily picked on. Those lessons alone, have made the journey worthwhile.

Monday, March 4, 2013

Teacher Trouble

   Things were going very well at school for Mikey and the boys in his class. Unfortunately, I have learned that all too often, when all seems well, something else is bound to happen. As we headed towards the end of the school year, we received word from his school that his teacher would not be returning the following year.
    Now, we were never told why, as the district was trying to respect the privacy of the teacher, but we were told that the change would be immediate. That meant that the school only had a short time in which to find a replacement. They started to interview immediately, and we anxiously waited to hear the news.
   When a replacement had been found, we were called to set up individual meetings with the new teacher in order to provide her with some information about our children, and to voice any concerns we might have had. Personally, I liked the teacher who had left abruptly. I thought she did a pretty good job with the boys, and they seemed comfortable with her. I felt badly that she had up and left, but it was out of my control. So, I waited for the date of  my meeting, and was eager to meet her replacement.
   Well, let me just say this.... I had a bad feeling from the moment I met her. She reminded me of a combination of Rachel Ray and Rosie O'Donnell. She had ,it seemed to me, a "bully-like" quality. She was nice,but not overly friendly, and we spoke briefly about Mikey. I was very curious to know what her qualifications were, because the school was not providing us with much information. What I did find out was that her prior experience included training aides who worked with children who had autism. I was not very impressed.
   When I left my meeting, I couldn't help but think that the district made a rash decision in hiring her due to time constraints. However, I kept my opinions to myself and let things happen as they would. School started up again, and Mikey went in happily,as usual. A few months in, we noticed that the head-banging began again. He seemed to be a bit frustrated at times, and we were concerned. At first, we thought maybe just the teacher change that  had caused it. He had been so used to his old teacher, maybe he was having difficulty adjusting.
   I was called in for meetings on various occasions, and each time I met this teacher, I disliked her more. Again, I just felt she was a little too" rough around the edges "to be working with this group of children. I was not getting any sense of genuine kindness, or love of her job from her and it made me uncomfortable. One day ,I was called in to observe the class. This was something that the school did from time to time. When I came in, the class was filled with aides, along with the speech teacher and the new teacher. The teacher was going over the days of the week with the boys. She was standing in front of the desk of a boy that Mikey had known from preschool..a very sweet,happy boy. As she asked him what day of the week it was, he did not initially respond, because he was busy fiddling with his shoes. The teacher then, bent down,grabbed his feet,pulled off his sneakers, and threw them at the wall behind her.She then slammed her hand on his desk and said" Now, tell me what day of the week it is!"
   I could not believe my eyes or my ears. All I could think was did I just see what I thought I saw? I was livid....I stared at this woman with the nastiest expression possible, and looked around at all of the other adults(aides,speech teacher), in that room, and could not understand how this was going on with noone saying anything. At that point, I wanted to speak my mind, but I did not want to upset the boys.When her little episode was over, she behaved as if nothing had happened, but I was furious. I left the classroom,with Mikey,  in a state of shock. In retrospect, I know I should have approached the principal immediately, but I needed some time to process it all.
   When I arrived home, I told Mike what I had witnessed, and while I was not looking to have anyone lose a job, I could not let this go. Perhaps this type of behavior was the reason Mikey was banging his head again. I made a call to the class consultant and told her what I had experienced while in the class. I explained to her that if this person behaved like this with a parent in the room, I could not even imagine what she was capable of when no other parent was there. I also expressed my disappointment at the other ladies in the room for not coming forward and expressing concern over this erratic type of behavior. She assured me that she would make sure the complaint went to the right people.
   Before long, we were informed that there would be another teacher change. However, it did not happen right away. A few moms in that class even received calls from this person begging them to speak on her behalf. All I know, is that whether or not the reason for her dismissal had anything to do with what I witnessed, this person did not belong in a room with these innocent boys. I had a bad feeling about her from the get go,and unfortunately I was right. This, is why I have difficulty trusting some people that work with my son. I always go with my intuition, and it has not worked against me yet.To see someone taking advantage of the fact that these children were unable to go home and tell their parents what went on was simply disgraceful. My only regret is that I was not present to watch her walk out of the doors of that school for the last time. I would have been more than pleased to show her the way out.