Saturday, September 7, 2013

The Ugly Side of Autism

 
One might be surprised by the number of times I have been asked " okay, I see that he is unable to speak, but other than that, what makes Autism so bad?" It really is not a dumb question, it is simply an example of how much there is that is still not understood by many about this epidemic.
   Please understand, that as I write this, I am not complaining, but rather explaining what goes on in our particular situation. I am not looking for sympathy, but there may be others who are in need of some compassion, and hopefully when you finish reading this,you will understand what I mean.
   Our son Mikey is generally an easy going child. He loves to laugh and be silly. When he sees his brothers getting into arguments or getting too rough, he removes himself from the situation quickly.
He is never in search of a confrontation. That said, he definitely has his moments of frustration.
   The problem with being non verbal is that it is very difficult to express yourself. Yes, getting a glass of juice or a cookie is easy enough, but when you really need to convey a thought or feeling, it can be excruciatingly difficult.
   Today was a perfect example. I needed to run a few short errands, and I took Mikey and one of his brothers with me. By the time that I was five minutes into the trip, I could tell it was already an epic failure.....why? Well, I cannot give you the true reason, but something had Mikey upset. He began to push his wrist into his head as hard as he possibly could, which quickly progressed into a ferocious head banging episode. He has unfortunately started a habit of hitting himself on his head ,right between his eyes, with his wrist. Hard.
    Realizing that nothing I had planned to do was critical, I went home. Upon entering the house, Mikey dug his nails into my upper arm as hard as he could, and ran into the house. He proceeded to go out the back door,slamming it four times, and let out a scream not to be believed. What had happened? I am not quite sure, but I do know that he was angry. He wanted to let me know how angry he was, and both he and I walked away from the situation hurt. Not a good thing. Below are the pictures of the scrapes on my arm, and the way his wrist looks from banging it into his head.
   

While he will frequently hit his own head, not very hard, but more as a self-stimulatory behavior, fortunately for us, he does not lash out at others often. Truth be told, it has been a very long time since he has behaved this way. We are not sure what causes the frustration, but have noticed that when seasons change, or we change the clocks, he goes through something.When I tell you that watching and hearing your own child hurt himself is a horrible thing, I mean it. I wouldn't wish it on anyone.
    Many families affected by autism deal with these type of situations daily. I once was told by my sister that a friend of hers confessed that the worst beating she ever endured in her life was from her seven year old adopted child who had autism. This life is by no means an easy one.
   Of course, noone should endure this kind of thing, and if it is a frequent occurrence, it should be addressed with doctors and therapists who will suggest various means of alleviating the problem. However, when it is a rare episode, each family must decide what is best for them.
   I am sharing this so you may take a moment to understand why this disability can be so devastating for families. It is by no means easy. As I mentioned above, I am not complaining, but rather trying to educate those who may not understand why it is so hard to live with.When this happens in our home,after all of the parties have calmed down, we hug and kiss Mikey, and talk to him about what he has done, because we know he understands. We  try to figure out why it has happened. Today, he kissed me, and rubbed my arm, clearly an apology on his part.....I, of course,always forgive with an open heart.This is my child, and I love him unconditionally. It is like being the mother of a toddler who has tantrums...you have to use these moments as teaching moments.Again, no easy task.
   For some children, puberty alone can trigger such emotions and frustrations.Parents have their work cut out for them, and patience is key. We parents of children with autism are tough, tougher than you know. We, like people fighting other medical problems, never give  up, as it is not an option. We persevere, look for solutions and continue loving our kids.
   So while breaking a nail, or trying to help your child decide on what school to attend, or even having petty arguments over trivial things with people are common complaints, understand that these things can all be fixed. If only the same were true of autism.

Wednesday, May 29, 2013

Maternal Instinct

Call it good judgement, or perhaps just a mom being overprotective, but sometimes things just rub me the wrong way. Every year, Mikey had always taken the bus to and from school. At first, it made me uneasy, but after getting to know the drivers and matrons on the bus, I felt more comfortable.  However, I was always on alert, always, because I really do not trust many people with my son.
   Throughout  his school years, we were always fortunate when it came to bus drivers. We had a great relationship with them, as well as with the matrons on the bus. You can always tell when someone really enjoys helping the kids, and when they don't. We always had a nice group of people working with him, so we were happy.
   Fast forward to fifth grade. I am not sure what happened to our beloved driver, but one day he just disappeared. We never really found out what had happened, but a few other moms had told me he passed away. I felt terrible about that, because we really liked him. Obviously, a replacement was needed. When we initially met the new driver, something just didn't sit right with me. He was very nice, but almost too nice, and that made me a bit uneasy. I told myself that it was probably just me, and we went about our usual daily routines.
    After awhile, I kept telling my husband that something about this guy bothered me. I found him almost annoying. Each day he would talk to me a bit too much....I can't explain it, but it made me uncomfortable. It was as if he was trying to ingratiate himself to us. It got to the point where I dreaded the bus pulling up. I would always get a big " Hello Barbara, God bless you ."
    He also started asking me ,what I felt, were too many questions about Mikey. It was really getting on my nerves. I decided that I did not want Mikey on the bus anymore. Nothing happened, and he arrived home safely and promptly each day, but I couldn't shake this uneasy feeling I had.
   One day, as I was walking in front of the school ,his bus was parked out front waiting for the kids. He opened his doors when I passed, as he did each day( there was no escaping this guy), and said, hey Barbara, I want to show you something. He handed me a picture of my son that he had taken while Mikey was on the bus. The picture clearly showed that the bus was parked in front of the school, but this upset me. I never had given him permission to take any pictures of my son, either verbally or in writing. I replied" What is this?when was this taken? He told me that he just wanted to show his wife pictures of all of the kids on his bus. This was not okay with me. At that moment, I was happy that I made the decision to take him off of the bus.
    I mentioned it to a few other mothers, who said he did the same with them, and they found it very odd. I didn't want to have the guy lose his job, but this entire thing made me uncomfortable, and I have learned to always go with my gut. I did tell the school staff about it, but as of last year, he was still driving the bus.
    Whether I was overreacting or not, I can't be sure, but I do feel that I made the right decision about driving him to school everyday. Mikey, is non verbal, so he cannot tell me when people take his picture, or much of anything else. In my mind, that makes him more vulnerable than the average child, and I refuse to ever allow my child to become a victim of anything. 
    For all I know, this driver may just have been an over zealous guy, however, I wasn't about to test that theory. Maternal instinct is an amazing thing, and I will continue to listen to mine every time.

Tuesday, May 28, 2013

Just A Boy and His Mom

Mikey had been having a pretty good year at school, given all of the transitions that he and his classmates had recently gone through.He never really gave us any trouble about going to school. He would wake up early every morning, with a big smile and bright eyes, and get ready for school.. He always went willingly. If there ever was a day that he seemed agitated in the morning, then we knew he really wasn't feeling well and we would keep him home.
    This particular day started out as any other. He was very cooperative in the morning, got dressed, brushed his teeth, and was ready to go to school. His school was on the other side of town, and I now drove him everyday. He used to take the bus, but I ended that after a brief discussion with his bus driver( more on that in a future post). So, we loaded up the car, and off we went.
   Each morning, I would walk Mikey into school and wait for one of his teachers/ aides to come and meet him. He willingly went with his teacher, waved goodbye, and he and I parted ways.
   After dropping him off at school, I went home. I was busy taking care of the usual household chores, you know, the never ending mountain of laundry that comes along with a large family, when my phone rang. It was Mikey's principal. She never called me, so I was quite surprised to hear from her.
  She asked me if I could possibly come back up to the school immediately and get Mikey. I asked what was wrong, and she went on to explain that he had been in school a short while, and he completely broke down. Hysterical. He was sobbing uncontrollably, and they could not figure out why. I assured her that I would be there in a few minutes, and raced out to my car.
   While driving to the school,my mind raced. What had happened after I left him? Was he sick? Was he in pain? He had been so happy this morning....what changed? I pulled up to the school and raced inside. The principal was there to meet me, and she told me that he was just sobbing and seemed  inconsolable. She escorted me down the hallway toward his classroom. Before we reached the room, Mikey, his teacher and the school psychologist turned the corner. I could see how sad he was, and my heart broke. He did not see me at first, as he was too distraught. When our eyes did meet, he took a few deep breaths, and his sobbing stopped. Just like that it was over. I kneeled down and held out my arms, and he ran into them. He squeezed me and just breathed in my ear, but no more crying. I assured him that I was going to take him home with me, and that whatever he had been upset about, he was now safe with me.
    The school psychologist appeared confused. She told me that when they asked him what he needed he responded on his communication device that he wanted to go home.  She could not get over how his hysterical sobs ceased the moment he laid eyes on me. How could he appear so distraught one moment, and then so calm and relieved the next? I explained to her that perhaps he just needed to be with me today, for whatever reason, he felt the need to be with his mom. She agreed, and told me that he quickly responded when asked if he wanted to go home. He needed me, and I was so happy to be there for him.
  You see, everyone has bad days now and again. Some of us long for a day off from work, others long to crawl back under the covers and go to sleep. That day, Mikey just needed me.  We thanked the ladies, and left the building. When we got back into our car, I looked at him and said" what happened Mikey? Did you miss me that much?" He just laughed, and my heart swelled. We were going back home......just me and my boy.

Friday, April 12, 2013

Eloping

 
  When raising a child with autism, a parent faces many difficulties. Things that we often take for granted in our everyday life, suddenly become important in your life for all the wrong reasons. Have you ever thought twice about placing a plastic garbage bag in your garbage pail, or placing your tube of toothpaste on your bathroom shelf? Probably not, but when you have a child that rips the bags consistently, and squeezes all of the toothpaste out of the tube, these things require much more of your attention.
   The same is true of relaxing. The parent of a child with autism, does not relax. It just does not happen. I want to share a story with you about a day that I wish had never happened, but it did. I am sharing it just so that you are able to step into this life,if only for a brief moment, and share an experience that was not only scary , but also extremely important. If you are the parent of a child with autism, this may be something you have yet to experience, but it could happen, so here is a little forewarning.
   On this particular day, nothing seemed out of the ordinary. It was a beautiful summer day, the boys were up and about, with Mike at work, and me taking care of things at home. The boys always played in our yard,which I had fenced in for safety purposes. If I was not in the yard with them, I was in our kitchen, watching them through the glass doors.
   Mikey was playing outside with his brothers, our usual routine, and was enjoying the swings,and the warm sunshine. One of the boys came in the house,I believe it was Sean, and went upstairs. Within a few minutes, he was yelling for me, as he need help with something. Knowing that the other boys were outside with Mikey I ran up to help Sean. By the time I had returned downstairs, two of the boys had come in, but Mikey was not one of them. I stepped into the yard to see where he was, but he was not there. I immediately asked the boys where he was,and they said they did not know. Frantically, I ran through the house, calling his name, from the basement to the attic, but he was not in the house. The boys and I then all ran outside and searched up and down the block,in all of the neighbor's yards, but we could not find him.I told Chris to call Mike,and I ran in to call the police.
   This was the moment every parent dreads. Sick to my stomach, I immediately called 911. Fortunately, I always remember what my boys are wearing, so I gave them a full description of him, his clothing and his situation. While I was making the call, my dear neighbors were out in their cars and on bikes searching the neighborhood.
   As I ran back outside, a police car came down the block to let me know that they had Mikey. I felt like passing out. The sense of relief, fear, shame and guilt that came over me was overwhelming. How could I have let this happen? The officer informed me that they had him for about 15 minutes before I contacted 911...that was because my immediate reaction was to search for him. Within minutes, an ambulance pulled down the street,and an officer opened the back doors. Out popped Mikey ,with a ball in his hands, laughing hysterically. This had all been a big adventure to him. I ran over to get him,hugged him, and burst into tears.
    By this time, Mike was home, we had spoken with the police, and were informed of Mikey's whereabouts. He had walked far enough away from our home, crossed a variety of very busy intersections, and was heading further away. He was found for one reason....he was barefoot. Since it was summer,and he had been playing in our yard, he had no shoes on. A woman had seen him,and thought this was peculiar,so she called 911. She slowly followed him until the police arrived, after which they took over.
   I am sharing this story for a variety of reasons.....eloping is not uncommon for children with autism. Many leave their homes on a daily basis. It is one of the most difficult aspects of this disability to deal with. I thank God each day that this woman had the sense to call the police. I wonder how many other people saw Mikey,but just kept driving? I think about the tremendous amount of guilt I felt that day. As I ran through neighbors yards, and up and down blocks I remember the horrible scenarios going through my mind. What if someone had taken him? What if someone was hurting him? Was he hit by a car? Was he hit by a train? Would I ever find him? How would I ever go on if something happened to him? I felt I had failed him.The entire day was horrific, and as I write this, my hands are trembling just thinking about it. Yet, this all transpired because I was simply helping one of my other children, and never expected the unexpected to happen.
   Many people may read this and other similar stories and be quick to say it is the fault of the parent. While I certainly agree that I dropped the ball that day, I can confidently say that both Mike and I are good parents. I do not know many people who would be able to handle all that we have with the love and compassion that we do. I am by no means trying to absolve myself of any fault, because,taking things for granted almost cost us everything that day. I am just trying to use this as somewhat of a teaching moment. If you take anything away from this story, please know that reporting any unusual things that you see, even if it is only a boy with no shoes, can make all the difference in the world. Be aware, and be concerned, not only for your own family, but for all families.
    In the end, we established the fact that Mikey had taken it upon himself to attempt to walk to the beach that day.We spent our summers there, and were not going on that particular day.When asked if that was where he was going, he replied "yes" (one of his few words). When I told him he had no money to pay the toll at the bridge, we both laughed, but inside I was sick.
   Something changed that day. Something important happened. In our house, we were no longer able to run off and do something, without thinking, or knowing where he was. Imagine spending all of your waking hours on alert.....that is what we do. That is not to say that there have not been a few escapes since this episode. A day later, he climbed up on a neighbor's garage roof. Fortunately, we were there,and found him. He is a quiet and sneaky (in a fun way) boy. If I call his name in the house, and do not hear him at all, I get frantic, and the boys pick on me..but one close call is enough to make you crazy. He has become better ,for the most part, although he will occasionally climb our fence and run into an adjoining yard. This is something we deal with, and have to continue to be aware of constantly.If we look tired, we are. If we look worried, we are. If we look happy, we are, and things are going well. Yet these "elopements" or attempts at eloping happen from time to time....we are just fortunate enough to have great neighbors and a great support system, in case we ever make the mistake of  taking a moment for granted and tend to another child.
      Be thankful for your moments of relaxation, and be thankful that your children can tell you where they are going or where they would like to go. Most of all,pay attention to the world around you,as that kind lady did that day.If something seems wrong, it probably is. Do not be afraid to get involved.You just may save an entire family with one phone call.

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 it...to 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

Siblings

    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.

Thursday, February 28, 2013

Religion and Autism

  One of the things we did for all of our children was to sign them up for religion on Sunday mornings. Each weekend, we would take the boys, drop them off at their respective classes for an hour, and then spend the day doing something fun together.
   While the other boys went off to their classes on their own, Mikey had a one-on-one teaching situation. He would willingly go each Sunday, and I would stay with him and his teacher while she went over his lesson with him. Now, I am not an over the top religious person, but I do believe in God, and I believe in tradition. I wanted my children to all know about their faith, receive their sacraments, and follow the same rituals that Mike and I did as children. Whatever they decided to do with this knowledge and foundation when they were older would be their choice, but for now, we believed that it was important for them to learn these things.
   Mikey actually enjoyed going each week, and loved to stop at the local donut shop for a treat along the way.By the time he reached second grade, he would be receiving his First Holy Communion, and I was a nervous wreck.He had aversions to certain foods, and I didn't think he would even put the host in his mouth. He might get upset too. Not wanting to  upset anyone else's special day with a possible outburst, I had asked the nun if we could possibly do ours privately. Since this is a special event in the Catholic religion, and represents joining the Catholic community,  she suggested we do it during a regular Sunday mass. This made me very uneasy, but unfortunately, the church still had much to learn about autism.
    We scheduled a date with the nun , and Mikey would receive Communion in June. As the day approached, we were nervous, but we wanted him to share  the same experiences as his brothers, so we made preparations. His suit was ready, the flower for his lapel had been ordered, and the camera was charged.
   When the day finally arrived, he was fully cooperative. He looked so handsome in his suit, I just wanted to kiss his cheeks all day. We arrived at church, sat in the quiet room right near the altar, and awaited the announcement that he would be receiving his sacrament that day. As the mass continued, I had a bad feeling. Nothing had been mentioned, I hadn't seen the nun, and we were getting near the end of mass. I figured it would happen during regular communion for the parish, however, it didn't. Before we knew it, mass had ended and they never mentioned Mikey once.
   Slightly irritated, and greatly disappointed, I approached the priest after mass. I asked what had happened, and he told me that the nun had never informed him about any of this. He could not apologize enough.He asked us to wait, and he would give Mikey communion after the parishioners had left. Unfortunately, Mikey would not eat the host. He kept his lips closed tightly,and would not do it. The priest suggested a sip of the wine instead. While I wasn't too keen on this idea,  Mikey did love  grape juice, so I figured a sip would not hurt. Unfortunately, at that point in time, he would only drink from a straw. I happened to have one with me, and the priest said we could use it. Mikey appeared cautious, and the wine made it almost all of the way up to his  lips, but not quite there. That was as far as we got. The priest told us that unfortunately, he wouldn't be able to sign his certificate if he hadn't had either a tiny piece of the host or a sip of the wine.
   We left the church with our handsome little boy, and  felt deflated to say the least. What was supposed to be a special day for him fell short. I was very upset with the parish and their lack of understanding about autism. I was annoyed at the nun for screwing up the entire thing. I just wanted him to receive once,just once, but it was not meant to be at that time.
   I later found out that other parishes were allowing children with autism to bring in a piece of whatever food they enjoyed, be it a piece of pizza crust or an m&m , and they blessed  it and allowed them to receive. I am still hopeful that at some point soon, we will reach this milestone, but for now, we wait. It is also my hope that more churches will come to understand the difficulties children with autism have with food, and find another way to bless their sweet souls.As for us, we were batting 1,000 in our family when it came to Communions.

Wednesday, February 27, 2013

Birthday/Holiday Gifts

   By the time December rolled around that year, we were in a pretty good place. All of the boys were excited for the holidays, and we also had Mikey's birthday to celebrate. He was my December baby, and the best Christmas gift I ever received.
   We always made a point of getting a special birthday cake for all of our children. Fortunately, we had a wonderful bakery close by that would draw favorite characters on each of their cakes. This was the easy part of the birthday. Mikey always had certain characters he loved, so whether it be Snoopy,Scooby-Doo, or a Disney character, we never had difficulty getting him a great cake.
   The hard part of the birthdays and the holidays was the gifts. Mikey loved certain characters,and enjoyed watching movies and t.v., but he wasn't big on playing with toys. This is not uncommon for children with autism. Many show very little interest in toys, while others may obsess over certain toys, line them up perfectly, and play with specific toys constantly. Mikey loved to play catch,so we always bought balls for him. He also loved to bounce, so we had purchased a small trampoline. This year, we were at a loss. DVDs were always an option, because he loved to watch them, but that didn't seem very exciting to us. It bothered me greatly because if I wanted to, I could fill up carts with toys and games for my other three children, but when it came time to purchase gifts for Mikey, it was just not as easy.
    For his birthday that year, I was lucky enough to come across a Thomas the Tank Train that he could ride on around the house. It would require moving some furniture, but, it would be worth it. While he was not particularly interested in playing with trains, he loved movement. This birthday gift was a huge hit, but now I had to find something just as stimulating for Christmas.
   I tried to be creative. Puzzles, balls and DVDs would of course make the list, but I wanted something special, something he would love. He never really enjoyed arts and crafts, so that was out.He already had a bicycle,scooter and skateboard. Then, one day while watching QVC, I found the perfect gift...a bounce house that came with inflatable balls, a volleyball net ,and soccer goals. It was a bit pricey, but I wanted so badly to see him happy! I bought it , and hoped that he would love it.
   Mikey loved Christmas...the trees, the lights, and especially the music.Throughout December, he would sit near our tree, and watch holiday specials with his brothers. He loved to eat Christmas cookies,and absolutely loved candy canes. His brothers used to tease him about stealing all of the candy canes off of the tree.It was definitely a very stimulating time of year for him. His eyes would sparkle as he came down our stairs on Christmas morning,and he always had a smile a mile wide. Yet, he would never run straight to the tree for gifts. Instead ,he would sit on the couch ,with a blanket and Mike, and watch his brothers have at it. It truly seemed to delight him . He loved to see the boys pick out their gifts and rip them open. As the boys indulged themselves, they would always run over and give Mikey some of his gifts,and usually help him open them. While Mikey loved to see some new goodies in his lap, I think he enjoyed observing it all more.
    When the gifts had all been opened, he was thrilled with his bounce house,as were his brothers. We enjoyed many years of fun ,bouncing for hours outside on beautiful days. I ,of course, was pleased to have found the perfect gift. Yet, as each birthday/holiday arrives, we still find it difficult to come up with great gift ideas. We do however, try our best to find things that will interest him and engage him. Things to keep him active and busy. I'd like to think though, that perhaps Mikey understands the spirit of the season better than the rest of us....as his joy seems to come from watching the joy of others,rather than indulging himself. A great lesson for all of us indeed.

Monday, February 25, 2013

Kudos to Disney

   Fall had arrived, and it seemed like a perfect time to head to Disney  again. Chris would be celebrating his 9th birthday, and we thought the kids would enjoy spending some Halloween time at their favorite place in the world.  We pulled the kids out of school for a few days,and embarked on our drive down I-95.
   Some parents may not believe that kids should ever be taken out of school in order to take a vacation, I disagree. While I certainly value the importance of education, I also value the importance of family time. In fact, I don't think enough people make enough time to connect with one another . For us, spending time together,away from the therapies,structure,and schools was a great way to refresh and return ready for action. Depending on the age of our children, we sometimes did this twice a year, usually near a school break so they didn't miss too many lessons. However, this time, we decided to go when the parks would not be crowded so as to ease Mikey's frequent inability to deal with waiting.
   I have to admit, I was a bit tense prior to this trip. Mikey had been having some serious issues with waiting, and tantrums on occasion. I was wondering how he would react to waiting in line for rides, food, etc. We decided that most mornings we would order room service, so as not to have to wait to be seated in resaurants,and wait for food to arrive. We also figured, depending on everyone's moods, we would  take turns going out with the kids, in case Mikey would rather be swimming. We also made sure to have plenty of drinks and snacks on hand, in order to prevent meltdowns. With a plan and our family, we packed up the car and made our way down to Florida.
  The great part about traveling was that all of the boys, especially Mikey,loved it. Whenever he would see our suitcases come out, his eyes would light up. The funny thing is, that we always worried about his behavior on trips, yet he always tended to behave the best out of all of the boys ! Of course, we weren't on the road an hour before someone got sick, another had to use the bathroom, etc. Typical when traveling with four young children. We got things under control and began to enjoy our time in the car together,with lots of laughing,storytelling and singing.
   When we arrived at Disney, everyone was super-excited. Mikey could not stop smiling and giggling.I was hoping this would be true for the entire trip. The beauty of this trip was that prior to leaving home, a friend of mine told me that Disney had a special pass for children with disabilities. It was similar to the Fast-Pass they have now, but it was only for the disabled. I thought this was only for the physically handicapped, however,I was wrong. This pass was also for children with autism. Upon arrival, we were told to visit City Hall in the park to obtain a pass. We brought paperwork documenting Mikey's autism as proof, but were not asked to supply it. We received our pass, and off we went.
   Well, I cannot tell you what a blessing this pass was! We did not have to wait on any lines, and it cut down on tantrums tremendously. We did not abuse the pass, but were ever so grateful to have it. Finally, a company that understood that autism was serious, stressful and addressed it. This was something that made our trip so much more enjoyable, and helped our family avoid a lot of unnecessary problems.Kudos to Disney for recognizing this need for families like ours. 
   All in all, our trip turned out to be a great one. We enjoyed the parks, the pools and the great weather.We swam throughout the days, watched fireworks at night, and the boys even had a chance to dress up and go trick or treating in the Magic Kingdom. Chris had a wonderful time celebrating his birthday ,and we enjoyed spending time together as a family.
   By the time we returned, Mikey was ready for school. We had always thought that he  seemed to thrive after a trip, and his teachers agreed. For once, we had taken a trip without our stress levels hitting the roof, and now that we were back,Mikey was on top of his game. All things considered,we were heading in the right direction.
   

Sunday, February 24, 2013

Genetics


   I have always believed that autism is genetic and is triggered by something in the environment. Many may agree, while many others may disagree. While I have absolutely no way of proving whether or not I am correct, I still believe with all of my heart that this is true. However, I want to be clear, that this is all based upon my personal experience and observations, rather than scientific knowledge.
    Let me explain. Many families I know,again not all, but many, have more than one case of autism in their extended family. If not autism, they have other neurological issues such as Parkinson's, epilepsy, or MS. They also frequently have family members with ADD, ADHD, behavioral issues or severe anxiety. In our families, there are other children with autism,people with ADD,ADHD,Parkinson's and severe anxiety. While I think that you may find any one of these things in most families, it has been my experience that where there is autism, somewhere along the family lines there are a few of these other things as well.
    Many people who disagree will stand by the argument that if it is genetic, why are we seeing such an increase? Why did we never hear of it years ago? Great questions, and my answer is this....just because we never heard of autism years ago, does not mean it did not exist.Many disabilities,ailments  and diseases obviously existed before we knew what they were.As for the numbers rising? Well, for one thing, we are far better at recognizing the signs today,and the spectrum ,as it were, is quite wide. We see children who are excessively shy, to children who have no verbal skills and will only rock themselves all day.Autism comes in many shapes and forms,therefore possibly increasing the numbers. We also live in a world where our environment has become a great concern ,especially when talking about not only autism, but many other physical ailments that plague our society today.
   Think about this for a moment. Many of us went to school with children who we considered to be different. If asked what we thought their issues were, most of us wouldn't have been able to say, but we just knew something was different about them. Looking back at my own childhood, I knew many children who had difficulty socializing. Many who said whatever came to their mind without giving it a thought. Many who had habits, that back then, we simply considered to be "nervous habits." How many people have you known in your life that would talk to you until they were blue in the face, although it was clear that you were uninterested? Remember anyone who seemed unable to take social cues, ie: not getting the message when you  made a face, or tried to interject, or simply paid no attention to them? Or what about the kids who simply preferred to be left alone...the loners? What about the person that knew every line to every t.v. show or movie, and had to repeat them at all costs?Then there were the extremely studious kids, who were sometimes referred to as "nerds." You know, the ones that went on to become engineers, doctors and scientists(and probably make more than we could dream of)?
    This is not to say that all of the people with these habits,or characteristics have autism, however if evaluated today, I think a large majority of them might be diagnosed with Aspberger's, at the very least.Studies have shown that in fact, many doctors ,engineers and scientists do show characteristics of autism. Obviously, some people with autism are more severe than others, but I am a firm believer that it has always been among us, we just did not know what we were looking at.
   As an adult, I look around(as I have mentioned in prior entries), and I now have a name for what I had seen before in many people. I understand them a bit better. Question is, had I recognized all of these signs among our families, would I have still proceeded to have a family? Most definitely.....I adore my boys, and although one of my boys has autism, I wouldn't trade him for the world. If given the opportunity, Mike and I would do it all over again...the same way. We have been blessed and have learned and continue to learn so much each day. Do I worry for the future of my boys and their children? Most certainly. It is my hope that whatever causes this disability, will be discovered and corrected, so that my children and yours do not have to face the challenges that we do.
   It is important to move forward quickly with research. If you currently do not know someone with autism,you will soon. The numbers are rising at an incredible pace. Unfortunately, at the rate they are moving, chances are in the next generation, you too may have a grandchild or other family member affected by autism. It is my hope every day that those "nerdy" scientists discover what the genetic implications of this are, as well as the environmental factors that are triggering the autism. Whether it be our food supplies, our love of plastics, or pollution, I anxiously await some answers and some progress.Until then, I continue to love the life out of my son, and hope that he will one day be able to tell us his story in his own words.

Wednesday, February 20, 2013

Fate or Foreshadowing?

   I have always believed that we are put here for a reason, and while we may not know exactly what that reason is, sooner or later some of the pieces of the puzzle start to fit together.
   When I was a junior in high school, we had a special dinner. This was a celebration for all of the kids in the eleventh grade, similar to a junior prom.We all met for a pre-party, then went off to a dinner at a fancy catering hall.It was tradition at our school, and it kind of turned into a weekend filled with fun.
   Prior to the dinner, we all met at a classmate's house. Her mom threw a big party,where we all gathered to show off our new outfits, chit chat and get ready for a fun evening. Of course, there were a million pictures to be taken. Above, is a picture of myself and one of my friends inside the office of the mother hosting the party. She, as I remember, was either a psychologist or a psychiatrist. I remember walking into her office to take a few pictures, then we all left, excited to get on with the evening ahead.
   I have looked at this picture many, many times over the years, and never thought of anything more than the fun memories of that night. However, over the last ten years, whenever I looked at it ,I saw something completely different. One,and only one thing in this photo stands out to me. If you look carefully at the bookshelves behind us, you will see many books, but also one book with very large writing. That book says AUTISM. Oddly enough, it is also in black and white, the exact same colors I was wearing that night.
    Of course, that evening I paid absolutely no attention to what was on those shelves. Even if I had noticed that book, it would have meant nothing to me,as I had no idea what autism was. Little did I know then what an impact autism would have on my family's life.
   Now, some may call this a coincidence, others may call it fate. I like to think of it as being similar to looking ahead at the pages of a really great story. My amazing story with Mikey. It was a very slight glimpse into my future.Funny thing is , I didn't know it then, and never thought to look for it. You see, that is the beauty of this life.....things unfold when they are supposed to, and things happen to us for a reason. I truly believe it is all part of a grand plan.I certainly cannot explain it all, but I can accept it all, find the beauty in it, and know in my heart, that this is all supposed to be part of my journey.

Monday, February 18, 2013

Super Sensitive Hearing

   Things were moving along nicely for Mikey in school, and generally, he appeared to be happy. Aside from our occasional hellish rides to the drive-thru, things were going well. We hadn't seen any head banging in quite some time. He did still fiddle with his hands, and rip a lot of things, but that wasn't anything we couldn't handle.
   As the year moved along, we started to notice that certain sounds were causing him to become distressed. I had often heard of children with autism or sensory issues having problems with different noises, but we had never experienced first hand....until now. Whenever our phone rang, he would cover his ears.We thought it was odd, but apparently, it bothered him. We lowered the volume on the phone....but it still bothered him. As a matter of fact, there were times when the phone rang, and it would bring him to tears immediately. We decided to turn the ringer off completely, and relied on hearing voices speak through our answering machine in order to know when a call was coming in.
   We also noticed that our dog barking was getting him upset as well. Anytime a truck went down our block, someone knocked on our door,the mailman came, or anyone walked past our house, the dog would bark. It sent Mikey over the edge.Funny thing was, if we were outside, and he heard any other dog bark, it did not phase him at all. We wondered if perhaps it was the echo in the house, but we were not sure.It got to the point where if we heard a truck coming, or knew the mail was about to be delivered, we would run through the house, find the dog, and bring him to the room furthest from the front door,in an effort to distract him. Often times, it did not work. As the dog barked, Mikey would sob and sob, and just be miserable. We thought about finding another home for our dog, but our other children adored him.We found ourselves, yet again, in a difficult position.
   Many may not be familiar with this, but in our neighborhood, whenever the fire department has a call, a loud siren goes off at the fire house. This, was the worst noise of all. Anytime, it went off, Mikey flipped. I asked a volunteer fireman why they still used these sirens, and if there wasn't some alternate method for them to notify the volunteers of a fire, like a radio. I was told that this is how they have done it for years, and although the radios were helpful, there was no indication that the whistle would stop blowing. What made matters worse, was that it did not blow once or twice a day....it blew all of the time.
   It was fair to say that between telephones,the dog, and the fire whistle, Mikey was distressed more often than not. We had solved the phone issue by turning the ringer off. Easy enough. While we contemplated what to do about the dog, we realized that although it was driving us crazy, it was not fair to take the dog away from the other boys, who already had made many sacrifices in other respects for their brother. Unfortunately, the fire whistle was completely out of our contol.
   I remembered back to when I had to take Mikey for a hearing test to be sure he could hear.Seemed odd now , as his hearing seemed to be excellent, almost too good. He heard things that the rest of us hardly noticed or paid attention to. Yet, loud noises such as fireworks, balloons popping, loud cars, or even the actual fire trucks, never bothered him at all. Living with this was by no means easy, but was interesting to say the least.
   After awhile, whenever one of these offensive sounds would upset Mikey, he would seek me out, no matter where he was. Unfortunately, I do not think it was for comfort,rather he would find me,and pinch me hard. Very hard. I am not sure if it was his way of making me understand how much the noise bothered his ears, or if he was mad at me for not controlling it, or if it was just a form of release for him. Whatever the reason, it became a habit, a painful habit, and no matter how often we tried to make him understand that he should not do it, it did not work. It seemed as if he could not rest  or calm down until he found me and pinched me after one of these sounds. Never did it to Mike, or Chris ,or even Timmy. Just me, and later on Sean. We found ourselves dealing with another difficult side of autism. We had to be consistent in our efforts to help him stop, and it would take quite some time (years) to overcome this aversion to these noises.
    I am happy to say, that he has since gotten over the phone issue.It never bothers him anymore. As for the dog, he has mellowed, and although he still jumps up whenever he hears a noise, his bark does not bother Mikey the way it once did. Mikey will now try to distract our dog from the window on his own. Unfortunately, the fire whistle still blows all of the time, but now Mikey simply covers his ears and hums until it stops. The temper tantrums, sobbing and pinching of long ago have thankfully subsided. It is interesting how little sounds, that we hear and take for granted each day, can be absolutely excruciating for a child or person with sensory issues or autism. Our experiences with all of these things is one of the reasons that I always encourage others to be grateful for the little things. The everyday things. If you are able to go about your day and not be bothered by any of these common things , consider yourself lucky. I can tell you first hand, it isn't easy.

Saturday, February 16, 2013

Hell At the Drive-Thru

  I have often said that being a patient person is one of my greatest gifts. It has been a blessing to me as a wife, mother and a daughter. Patience, however , has never been Mikey's strong suit. While most of the time he was happy and giggling, there were many moments when things were not so rosy. It seemed, that he,along with other children with autism, did not have a tremendous amount of patience in certain situations. I am not sure if this was a lack of ability to be patient, a lack of understanding as to why one needs to be patient, or a combination of both.
   One thing that we dreaded was the drive-through line at McDonald's. My kids are not really fast food fans, but they do enjoy the occasional hash brown or box of french fries....and that is all they would ever order.I myself, do not like fast food , however, kids are kids, and every so often, it was something they would ask for. Unfortunately,when Mikey was younger, his diet was somewhat restrictive.By that I mean, he did not like a large variety of foods. This is not uncommon for children in his situation. Combine that with class parties filled with fussy eaters being offered McDonald's, and you wind up with an ever present desire for more and more french fries.
   Whenever I would take a trip to McDonald's, I would go to the drive-thru. It was easier than dragging the four boys into the store with me, and Mikey having a meltdown in the middle of the store because his fries did not come fast enough. Now, when a store says "fast food," it should be just that, however it never was. Here is what would happen to us on every,single visit. I would pull onto the line, and Mikey would start to get antsy. A few cars in,and he would be kicking the back of my seat. Then came time to place the order....and I would have to try to quiet his yelling as I placed it. By the time I pulled away from the ordering place, he was in a full fit. Once we arrived at the window to pay, he was screaming, I was sweating, the other boys were yelling "be quiet", and I was remembering when I was young and single. Then ,inevitably, just when it seemed things could not possibly get worse, I would hear the words that I dreaded..."can you please pull up, and we'll bring the fries out when they are done?" Seriously??!!! This is a restaurant known for french fries, and they are never ready?! My son is screaming, and you want me to pull up?! As we pulled the car up to the waiting place, Mikey was in complete meltdown mode. Kicking, tears streaming down his face, and all of the boys were flustered. Waiting two minutes for a few boxes of french fries had turned into an eternity. Finally, they arrived, and the screaming turned to gentle sobs, and before we reached home, order had been restored. That my friends, was a typical quick ride to get some french fries.
   This went on for some time, and I tried to keep my boys away from there as much as possible. It created nothing but havoc for us.A simple box of fries created some of the most stressful moments that one would have to see to believe. One morning, Mike decided to take Mikey in by himself for breakfast. He really just wanted to try to help him understand the waiting concept if possible, and to spend a little time with him. Needless to say, after they ordered, they were told they would have to wait for three hash browns....well,
guess what happened? Mikey went into a full fit, and the girl at the counter just stood there looking at him. Finally the manager approached the counter, and asked the girl what the problem was. Mike told him that Mikey just wanted a hash brown and that he had autism.The manager turned to the girl and told her to get him his hash brown immediately. She did, and again, the calm was restored. The manager then told the girl that in a situation like that, you get the customer their food asap,and he apologized to Mike.
  Now, he really need not apologize,as it was not his fault, but the girl at the counter could have tried to help a bit faster instead of staring, but hey, this is what goes on.I am happy to report, that since these episodes, so very long ago, the tantrums have basically subsided . Mikey can now go into restaurants,most of the time, and wait a few minutes for his food. We just make sure that we never wait until he is super hungry.
  This is just one example of how living with autism can make your life so very different from the average family. Adjustments constantly need to be made, and we make them. Fortunately, Mikey has a much better diet these days, and fast food hardly ever happens anymore. I cannot begin to tell you how thankful I am for that.

Tuesday, February 12, 2013

Crazy Questions

    I have never been the type of person who feels the need to just say whatever I am thinking about someone else.If I don't like someone's  clothing or  hairstyle, I am certainly not going to tell that person how I feel. There are a few reasons for that. First, it would only hurt his/her  feelings. Secondly, this person is  probably  not interested in my opinion anyway,but even if asked, I would never make someone feel bad about himself. As children, we sometimes tend to tease, or be catty(especially girls), but as adults we should simply know better. Unfortunately, in many cases, the adults are worse than the children.
   When Mikey was in elementary school, most of the children were not only kind, but accepting as well. I guess that is because we live in a society today where our children are exposed to many differences amongst themselves, such as cultures,religions(or lack of), and special needs. It is very interesting to see the level of tolerance that children have in comparison with adults. That is not to say that there aren't still some playground bullies, etc., but I think that overall, we have seen our children grow up in a world that is far more tolerant than the one we grew up in.
   It has been very interesting ,and even amusing at times, to hear some of the comments that have been made and the questions that we have been asked throughout our journey. I often wonder how some people work up the nerve to say the things that they do. At first, I was often offended, but I have since developed a thick skin. In a situation like ours, you have to be strong in order to move forward, so I have learned to brush off a lot of ignorant remarks. When someone makes a comment that would have possibly upset me long ago, I now just think to myself, "here is another person without a filter...perhaps he/she has undiagnosed issues?" I usually wind up feeling sorry for that person. Why? Well, it is simple...he/she may have no tact, no self-control, may not be very bright, may want to be hurtful or all of the above. I'd rather be on my side of the fence anyday.
   While it never fails that someone will make a silly remark or ask what we consider to be a ridiculous question(yes folks, some questions really aren't that great), we never find ourselves offended by well-meaning people who are truly curious and are looking to learn about autism. I will glady discuss it with anyone who chooses to approach me. I am not guarded, and do not want people to think that questions cannot be asked, after all, that is how we learn. However, some are so ridiculous and downright offensive, they are not to be believed.What is even crazier about all of this? Some of these questions were asked by family members!! I am going to share a few with you, and in parenthesis, will be what was going through my head as they were asked.

1. If you could do it all over again, would you still have Mikey? (Of course , but if I were your mom I might think twice about it).

2. Can't you give him some kind of medication to make him better?(Sure, we just withhold it because we are mean).

3.This must be the fault of the mother/father. (And you must be a moron).

4.Why is he like this?( Like what? As if I hold the scientific key everyone else is searching for)?

5. What did you do while you were pregnant?( Drank like a fish....what else would I do)?

6.How can we fix him?( I guess we could take him to the vet).

7.Are you going to put him somewhere when he is older?( Yes, in a closet in the basement).

8.How do you do it?( Do what? Listen to you? I have no idea).

9.Do you ever feel embarrassed?(Yes, right now because I am speaking to you).

10. If you just let me help, I could cure him.(Right, because you alone know the cure,thanks Jenny McCarthy).
 
  So, you get the idea. I find that having a good sense of humor and taking these questions from where they come, helps me to deal with them more easily than in the beginning. It is okay to ask questions, but it might be a great idea for some people to think about them before blurting them out, that is unless they have issues of their own.

Monday, February 11, 2013

"Mommy,Why Doesn't Mikey Talk?"

  As the boys were all getting a bit older, and chatting up a storm, they noticed that their brother was not speaking like they were. Sean was still a bit too young to understand it all, however, Chris, was very aware,and Timmy was noticing differences as well.
   One day, while sitting and doing homework with Chris, he looked up at me and asked the inevitable question. He wanted to know why Mikey was not talking. I thought it was interesting that he would ask me in the middle of homework, and thought perhaps one of his classmates might have brought it up. Whatever the case may have been, he was asking, and he deserved some answers. Honestly, I had never given much thought as to how we would explain Mikey's autism to the boys because we were all actually living it each day. However, the boys obviously did not understand it , and it was time to answer some questions. Our conversation basically went like this;
Chris: "Mommy, why doesn't Mikey talk?"
Me: "Well, he has something known as autism, which makes it difficult for him to express himself."
Chris: "Will he ever be able to speak?"
Me:"I  hope so, but I can't be sure."
Chris: " If he can't speak, how can he take care of himself?"
Me: " Well, we are hoping that he will soon learn to speak, but there is a chance that he may need a lot of help when he gets older."
Chris:"Don't worry, I'll take care of him."

  What do you say at a moment like that? Here is my oldest son, all of age  9, telling me that he will care for his brother when he gets older. To say that I was choked up is an understatement. I went on to tell Chris that I hoped that he would never have to do that, but I was very proud of him for offering to care for Mikey. At that same time, Timmy chimed in from another room adding that he would help Chris,and that they could take turns caring for Mikey. My sons were a rambunctious bunch, were a bit rough at times, and were not always well-behaved, but they loved each other, and both Mike and I were very proud of them.
   After my conversation with Chris, Mike and I had some very serious conversations. What will happen to Mikey when he is older, and we are no longer here? Who will look after him? Is it fair to have his brothers feel that they need to care for him forever? What about their own lives, future wives and children? Who did we know that would be willing to be a guardian for him if necessary? Difficult questions to answer, and not very pleasant things to talk about.Unfortunately, it was a reality and we would have to start giving it serious consideration.
   This is something that every special needs parent has to consider. For me, I had never even thought about placing Mikey in an adult home, or any place where he would be cared for by anyone other than family. I tried to put all of this out of my mind, because he was only six, but it was definitely a conversation that we continued to have. Did we come up with any concrete answers? No. Do we still worry about this ? Most definitely. If anything, conversations like these, make us realize how important it is to help Mikey to become as independent as possible, and makes us proud to know that our little family that we are raising is willing to take care of their own. As for me, it has made me realize that I need to take care of myself and live to be 100.





Thursday, February 7, 2013

The Dynavox

   Our summer had come to an end, and Mikey had started school again. This year, the Dynavox would be used each day to not only help him with communication, but also to help him learn his basic math and reading skills. He seemed to do well with the machine at school, and his year was off to a great start.
    Each day he would come off the bus carrying this heavy machine in his backpack. I would quickly take the backback off his back, and asked the matron if she would mind not putting it on his back because it was too heavy. She agreed.
   As the days passed, I would get Mikey ready for the bus each morning,and wait outside for it to arrive. One morning , as he was boarding the bus, I handed his backpack to the matron (who was an absolutely lovely lady), and she said" you know, they told me at school to tell you that they want him to have his backpack on his back when he comes on and off of the bus." Normally, this would not have been an issue, but with that machine in there, it was far too heavy. He was only in first grade! I explained to her that I would discuss it with the teacher. It was decided that he would wear his backpack, but carry his machine in his hand.Still heavy, but at least it was not on his back.
  We were also asked to use the machine as much as possible at home, even for the simplest requests. Here is where we ran into trouble. Mikey was six years old. If he wanted a snack or a drink, he would usually help himself. He would open the refrigerator and help himself to a bottle of water or a juicebox. He would also open the snack cabinet and choose whatever snack he was in the mood for. He was very independent, and we thought that was a great thing. However, his speech teacher kept requesting that we make him use the machine to request the food and drink items at home. This seemed silly to us. Yes, we wanted him to utilize his machine to make his needs known, however, if he already knew what he wanted,and was able to help himself, why use it? Yet over and over his speech teacher pressed on about this. The more she pressed on, the more irritated I became.
  We finally got together for a meeting, and yet again, I was kind of  "scolded " about using the machine for simple requests at home. I found it so interesting that here I was again, being told what to do in my own home, by a very,very young, single speech teacher. In other words, she had no children of her own, had no experience running a household filled with people, and certainly did not have to deal with autism 24/7. I tried to explain to her that it would be more annoying for Mikey to have to run to his machine,find the page for food, scroll down to find the request for juice,find the specific juice he wanted, and then make the request. By the time he did all of those things, he could have grabbed his juice and been done with it. I also thought that it was great that he was becoming independent. She disagreed. I finally put it to her this way...I asked her to put herself in his place, and take the machine home for a weekend. I wanted her to try to live like she wanted him to live. She would need to use the machine anytime she wanted to do anything, such as use the bathroom,grab a drink, eat, go out, etc. She looked at me like I was crazy. Of course, she did not agree, but I didn't care. I was only trying to prove a point. It was very easy to look from the outside in and tell us what to do, however, it was not necessarily as easy to implement these ideas in real life.
  I went on to explain that being patient was a difficult thing for Mikey. I had three other children to care for as well. Why would I make him wait for a drink, one which he could easily help himself to, just so he could press the right buttons on the machine? Sometimes the machine did not always work, this only frustrated him further. Sometimes I might be in the shower, or helping one of my other children....again, why should he have to wait? Plus, we were getting him to say please and thank-you without the use of the machine,and that was our goal from the very beginning. I thought the machine was a great tool to utilize in school, and also great if he needed to express something he could not otherwise express,but for everyday life at home, it seemed to be a bit too much. Mikey was doing very well with the machine at school, and that was a place where he could not just go to the refrigerator and help himself, so I understood the need for the Dynavox. I could even understand the need for it if we were in a restaurant, but in our own home, I wanted Mikey to learn to help himself.
   The speech teacher and I never really came to an agreement on this, and unfortunately, that remained true for many years. Mikey used his machine daily at school, and we used it at home for his homework. We were happy to watch him grow and become more and more independent. Were we doing the right thing?I cannot say for sure, but it was working for us ,in our home. This had always been one of my gripes about some people working with my son. Yes, they had degrees in their field of expertise, and yes, they worked each day with children affected by autism, however,I had yet to meet one that had a child with autism.I looked at it this way, in life, helping children with autism is what they did for a living. Living with autism was our life.
 

Tuesday, February 5, 2013

The Mind of the Parent

  Mike and I were embarking on a journey that we had never anticipated. When we were dating and later married, we had never discussed autism, much less how our lives would change if our family were ever affected by it. However, when you are young, and planning a life together, it really isn't something you talk about.
    I consider both Mike and myself to be  fairly easy-going people. My husband is actually one of the most laid-back guys I have ever known, and for us ,this has been a blessing. When it had first been determined that Mikey had autism, our minds were in fifty different places at once, but then things calmed down. That is not to say that we have not had difficult days, or trying moments,because we have had many. The beauty of our relationship is that when I become upset or stressed, he helps me regain my composure, and vice versa. If one of us loses sight of what is really important, the other helps to bring things back into perspective. I am ever so thankful that I have a partner on this journey, because many parents do not, and extra support can be critical at times.
   Once we made it through all of the doctors, teachers, therapists, and initial changes in our lives, we continued to move forward in a positive direction as a family. We still did all of the things we had done before. We traveled, we spent summers at the beach, we shopped, we celebrated milestones, and we spent weekends visiting zoos, aquariums,parks and museums. Yet,while all of these things remained the same, we
had forever changed.
   You see, once autism enters your life, there is no going back. While you carry on each day with your normal routine, it is still somehow in the back of your mind. This does not mean that we dwelled on it non-stop, but even when I wasn't thinking about it, it crept back into my mind. I looked at people differently, and perhaps had a better understanding of them, their moods, and their reality. I was able to spot a person affected by autism a mile away. I remember being in various situations where we encountered families who were obviously going through what we were, and as parents, we would immediately click with the other family, even if we were only strangers passing each other in a store. There is this sense that I have(and I think this may be true for many other parents who are in similar situations), and you glance at the other family, and they glance back, and you just get it....you understand it, and nothing more needs to be said.
   I also thought about all of the people I had known in my lifetime that were a little different or unique. The excessively shy kids at school, the people who invaded my personal space when speaking with me, the people who always managed to say the wrong thing, as if they had no filter. I thought about the people I had encountered that were never able to look me or anyone else in the eye, people with odd habits such as hair twirling, pacing, fiddling with their pencils, humming incessantly, and those who were socially awkward. I had known many people throughout my life that had characteristics of autism, and I had never realized it until it
became part of our lives. I now understood these people a bit better, and felt for them.
   I also started to look at our own families, their personalities, their lives , their ability to maintain or not be able to maintain relationships or jobs. The way the behaved in social situations, the hobbies they enjoyed, or their lack of hobbies,their habits and their behaviors. In essence, I started to evaluate all of these people and things in my own mind,whereas before Mikey, I would never really have given much thought to any of it.
    Perhaps the most important thing that was going through my mind at this point in time was understanding the importance of patience and tolerance. I had always been a very patient person, and I now considered that a special gift in my life. Patience was a must in our situation.However, I would always encounter people in stores and other places that were very quick to judge, and had a lack of tolerance for many,especially children. I have learned that the child throwing a tantrum in aisle 8 may not be a spoiled brat who needs a spanking. I have learned that the child who hits his/her parent in public may not be the undisciplined monster most onlookers would suspect, and I have learned that instead of staring at a mom or dad who is in the midst of some of these trials, it is more helpful to offer to help them by maybe moving their shopping cart out of the way, or even helping them to make a graceful exit out of a store.
    Many years ago my husband took Mikey to a local grocery store. After picking up a few things, Mikey started to lose his patience. As they were on line, he became more and more vocal, and although it was only a few minutes, for Mike, it seemed like an eternity. As they were exiting the store, a young,fresh cashier said out loud " thank God they are getting out of here." Mike stopped in his tracks, turned around and approached this cashier. He looked her in the eye,and loudly said " I hope that you never have to go through anything like this in your life...have a nice day!" I think it is fair to say that she indeed, looked quite foolish, with everyone now staring at her instead of Mikey. Perhaps that day she learned to be a bit more compassionate, and to have some tolerance and patience. I hope so.

Monday, February 4, 2013

Means of Communication



   Summer was moving along nicely, and we were all adjusting to our new schedule of leaving the beach to pick up Mikey and racing back down there to enjoy the rest of the day. The boys all seemed happy and were having a fun summer, so in that respect, things were good.
   I had an opportunity to meet with Mikey's teacher, and we discussed his progress,as well as his difficulties in the area of communication. It had been decided that he would be slowly introduced to a communication device known as a Dynavox. This machine would help him express himself and hopefully alleviate any feelings of frustration. I was told that the machine would go everywhere with him, school, home, etc. Seemed
easy enough.....then I saw the machine.
   It was not a very large device, I'd say about the size of a portable dvd player. The problem was that it weighed so much! This machine was heavy. It seemed to me that it would be very tedious having to carry this thing around all day. It wouldn't be too much of an issue at school, as it sat on his desk most of the day. However, in everyday life, it seemed like it might possibly become a problem. Of course, we wanted him to have a way to make all of his needs known, so we went along with the plan.I also requested that they try to teach him sign language. I thought it would be  great for him to have another way to communicate if needed.
The response I received was twofold, first they did not think it was practical, because not many people understood sign language. Secondly, they felt that Mikey had poor fine motor skills and lack of hand strength, so it would not be effective.
   Let me just say this, I do not like to hear "no" before something is even tried. What harm could it possibly do to make an effort to teach him sign language? The other thing that drove me crazy was that Mikey had a set of the strongest hands I had ever encountered on a child. We have a friend that used to joke about how Mikey could rip a phone book in half if he tried. As mentioned in prior posts, he was always playing with his hands. He also had a habit of ripping and twisting things....things that were not easy to rip or twist. He would rip apart plastic trash bags that we kept in our trash can. He would twist bags from the supermarket so hard that the ink would be completely gone when he was finished. He would rip almost anything he could get his hands on. We even went through a phase where he would rip tissues, toilet paper or paper towels non-stop.
If I left a room for five minutes, when I returned, it would look like we had a snowstorm with all of the tiny bits of tissues everywhere. It got to the point where we could no longer buy regular trash bags and had to use the heavy duty construction bags for our garbage. Guess what? He ripped those too.
   Now, I would agree with the teachers that he may not have gripped his pencil properly, but when it came to hand strength, he had it. After much persistence on my part, they decided to try the sign language. Within a month they came back to me saying it was not working. I didn't feel that was enough time, however,they did not agree,and discontinued it. Instead, they focused on only the machine, which was a great thing for him, but we were very disappointed that they gave up so easily on another method of communication for him.
   My son is capable of many things. He only needs constant reinforcement to allow him to flourish. Having them give up so easily made me question whether or not they had his best interests at heart or only their own agenda. I thought perhaps it was the latter....and  future events would only confirm my belief.