Thursday, February 28, 2013
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
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.
Monday, February 25, 2013
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
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
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
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
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
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
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
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
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
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.
Friday, February 1, 2013
I was not thrilled with the idea of him being in summer school. Normally, we would take all of the boys to the beach each day, and that is how we basically spent our summers. With Mikey in school, we would only be taking three of the boys to the beach, and I felt bad about that. We always traveled as a pack, and we would be missing him. I didn't really think it was fair for him to be at school while his brothers were playing in the sand and swimming. However, I was encouraged by school personnel to have him attend, because it was what was best for him.
We spent that summer getting Mikey off to school in the morning, then taking the rest of our crew to the beach. By 1:00, we would have to either head home for the day, or let Mike or myself go home, wait for the bus, and bring Mikey back to the beach to meet his brothers. It was a bit crazy, but we did it.
It was very important for us to have Mikey at the beach for a variety of reasons.First and foremost, he loved it. He loved to walk on the beach, jump over the waves, and swim in the pool. It also provided a
wonderful time for our family to be together. My parents were with us everyday, and Mikey loved to go swimming with my dad.Each morning, we would walk along the shore toward the giant rocks that marked the end of our particular beach.This had been the same beach where I spent my summers as a child, and I loved having my own kids there as well.
Mikey had developed some different habits courtesy of autism. As I had mentioned earlier, he would clasp his hands together tightly,and hold them so close to his face. He also jumped up and down frequently, and loved to spin. As we were walking along the beach one day, my dad said " look at Mikey,he isn't doing anything with his hands..isn't that something?" He was right. We began to notice that whenever we walked along the water's edge, Mikey would not play with his hands, or "stim." My dad, who lived and breathed for the beach and the ocean, thought this was amazing. "See, this is where he needs to be...the beach is good for him." I am not sure why the self-stimulatory behaviors stopped, but I can venture a guess.
I think perhaps the motion and noise of the waves, the birds flying above, the sea air, and watching the boats all provided enough sensory stimulation for Mikey, so he didn't need to engage in his regular stimulatory behaviors. School may have been helping him, but the beach soothed him. He was in his happy place, and so were we.
We spent our entire summer walking that beach each day, and marveling at how all of the different behaviors stopped when we were on the shoreline.....and each day as we walked, my dad would look at me and say " don't you worry, he's going to be just fine."