Thursday, January 31, 2013
son Christopher's First Communion. Although our church had a quiet room, Mike and I decided it would be best to let Mikey and his little brothers stay at home that morning.Of course, they would be part of the celebration afterwards, but to handle the three little ones and pay attention to Chris at the same time seemed like a bit too much.
We had arranged for my parents to come over early and keep an eye on the kids. My head told me that this was probably not the best idea, but my heart wanted to give Chris all of the attention he deserved that day, so we stuck with that plan.
As we were getting ready that morning, I sensed that things weren't going to go as planned. Chris was happy, looked very handsome, and was ready for his big day. The boys all seemed pretty content as well.Seemed too good to be true, and it was. When my parents arrived, they sat in the living room and started to play with the kids. Slowly, I noticed Mikey's mood change.He knew we were leaving, and the separation anxiety resurfaced.He wanted to go with us. I felt terrible not bringing him, but I did not want to be in a situation at church where my son might possibly become disruptive, and interfere with this special day for so many families. I had always tried to be considerate in that respect. If we were ever out and any of my children became moody, or disruptive, I would always try to remove them from the situation so as not to be disrespectful to others. Well, this had backfired on us in a big way.
Before we left, we had Chris pose outside for a few pictures. Mikey was becoming more upset, and my parents already looked frazzled and we had not even pulled out of the driveway yet! I told my dad that maybe if he walked with Mikey outside for a bit, he would be okay. He tried, but it didn't work. My dad had always been an extremely patient man, and my children adored him, but both he and my mom were older, and this had already proven to be too much for them. My dad was flustered, Mikey was in tears, and Mike and I were beyond stressed. Mike decided to stay back for awhile,and try to diffuse the situation. I went ahead to church with Chris, and had hoped that Mike would follow along shortly after.
Well, after all was said and done, Chris made his Communion, Mike missed it, and my father-in-law had to stand in for Mike at church. I remember a nun, new to the church knew what was happening, and sat with us, trying to provide some level of comfort,I suppose. However, I didn't want any. Here we were in another situation where someone was feeling sorry for us. I think that bothered me more than anything else. Of course, I had wanted Mike to be there for his oldest son's First Communion, but at the same time, I couldn't help but want Mikey to be okay too. That is the thing about being the parent of more than one child...your attention is constantly divided, and you are sometimes forced to make difficult decisions.When one of your children has autism, that happens more often than not.
At the end of the day, Mikey was okay, Chris had made his Communion, and Mike and I were
mentally exhausted. As I look back, I know it was a rough day, but it was only the beginning of many times that we would have to make sacrifices on this journey. That is life, and it was our life, and we have learned to be okay with it all. The bottom line was this,at the end of that crazy day, everyone was happy. Did it go the way we had pictured it? No. Was it the ideal situation? No. Did it go according to plan? Definitely not, but times like that always made me think about a quote from a book I read in high school....." the best laid plans of mice and men often go astray." I have since learned not to make too many plans.
Wednesday, January 30, 2013
As a parent of a special needs child, the school districts often offer some type of "parent training" as part of the child's educational plan. When you are only beginning a journey such as ours, you tend to comply with most of the requests you receive from school. Mikey's school held its parent training sessions at night. While I was not a fan of leaving all of the kids in the evening, especially when Mikey was in the throws of separation anxiety,I decided to give it a try. Maybe I would learn something?
It only took a few sessions for me to realized that this was not my cup of tea. I am not really sure what the goal of the training actually was, but each session usually turned into a discussion between moms, talking about the usual mom things,only ours involved autism. Of course, it was nice spending time with the other moms, because I genuinely liked many of them,but in reality, the only place I wanted to be from 7pm - 9pm was at home, in my pajamas, with my family. Add in the extremely boring lectures and the fact that I knew Mikey was upset because I was not home, and it all became even less appealing.
Mikey's class was fortunate enough to have a consultant, which in the autism world is a person who is an "expert"(there is that word again) on autism, and could offer advice if needed. The lady who served as Mikey's class consultant was indeed a lovely person, but perhaps not the most exciting person to listen to during a lecture. These training sessions became very scientific, and truth be told, I had had my share of classrooms and lectures while I was in college. She was an incredibly intelligent woman,and very stern, from what I could see. She would explain to us that if one of her kids(who were typical children) accomplished something at home he/she would receive one m&m. Really? All I could think was here we go with the one m&m thing again. Who does that?
I did, however attend my fair share of these meetings before I decided I'd had enough.While some people might find this type of thing interesting or helpful, it was not for me. I found nothing more enjoyable than being at home in the evenings, snuggling with the kids and enjoying some family time. While I did receive a bit of grief from the CSE committee about my decision to stop attending, I stood firm, and told them that I really was not getting anything out of these meetings, and preferred to spend time at home with Mikey. They finally
eased up, but even if they had not, I would not have continued. I looked at it this way,while the consultant was nice, and well-versed in the subject of autism, she did not herself have a child with autism. I took issue with that. How could she possibly train any of us in parenting a special needs child when she was not herself a special needs parent? I mean, I could read every book in the world about performing brain surgery, but in reality, if asked to actually perform one, I wouldn't necessarily know what I was doing,or be good at it.What I am trying to point out is that both Mike and I were finding that the true way to learn about autism was to do what we were doing each day...living with it. Besides, if my son did something wonderful, I was going to give him a whole handful of m&ms...not one.
Tuesday, January 29, 2013
As I had previously mentioned, Mikey loved adventures, and was always a willing participant when we had to go anywhere.This made life easy in many instances. If Mike decided to take Mikey to the store, or the park, he had no problem getting ready and leaving me whatsoever. Unfortunately, this did not work both ways. If I needed to leave the house without him, it became a very difficult task. It was not very often that I could not take him places with me, but every so often, if I had an appointment with a dentist or doctor, or if I had to go to a meeting at school, I was unable to take him. This did not sit well with him at all.
I remember many times he would be upstairs in the house watching a movie, or relaxing, and I would tell Mike that I was going to the store, never thinking Mikey would even notice I had left. As I would pull out of the driveway, I would look up at our front window, and there he would be, crying. Not just crying, sobbing hysterically. It would break my heart. I would pull right back into the driveway and either cancel whatever I had planned, or pack him up and take him with me. Interestingly enough, he never did this with Mike. We were both very close with him, so the only thing I could think of was that perhaps he was so used to Mike leaving for work each day that it did not affect him as much. I had always been home, so when I left, it was an event. This continued for many years. I remember trying to sneak out on occasion, but not only did it never work, I worried that he would learn not to trust me. We tried to explain to him that sometimes I might need to leave for a short while, but would always return. That did not work either.
One particular evening, a friend was having a tupperware party , and I went to her house to stop in for a few moments. I had been there for maybe 15 minutes, and my cell phone started to ring. It was Mike, telling me that Mikey was inconsolable. As I was heading out the door on my way home, the woman who
I did not know, had asked me to stay until she finished her presentation. I explained that I did not mean to be rude but I had to leave. She pressed on, assuring me that she was almost finished, and again, I explained that I had to leave. Again, she asked that I stay, and as my cell phone continued to ring, and I had to firmly tell her that I had a son with autism, who needed me and wasn't going to wait for her to finish her presentation. With that, I left and found Mikey at the front door waiting for my ,sobbing his eyes out. Again, my heart went out to him.
Fast forward a few years....I believe Mikey was eight when we faced one of the first losses of our lives. Mike's dad suddenly became ill and passed. We were heartbroken and were in the process of finding out about all of the arrangements. My first thought was how would I be able to attend the wake and funeral ? Surely, Mikey would be devastated if I left him for any length of time. We arranged for another family member to stay with the boys, and we proceeded to get ready for the services. Then the unthinkable happened. We left the house, got into the car, and Mikey stood at the window,gently putting his hand up as if to wave goodbye.
He did not cry. He did not get upset. He handled the entire situation as if he completely understood why it was so important for us to leave. This happened for two days... for both the wake and funeral. My son understood what had happened.
Up until that day, I was never able to leave the house without him getting upset. Oddly enough, after those two days, I rarely had that problem again. I am not sure if he had just matured,or if he had a strong sense of what had transpired, or if he finally understood that it was okay to let go, but he had progressed,and that was definitely a good thing.
Monday, January 28, 2013
I received a letter inviting me to attend a meeting at the new school. This gave us an opportunity to meet the other parents, tour the school, and learn a little about the program. At this point, I felt as if someone had handed me a gift, because I had never wanted him to be far from us. Now, he would attend school in our town, not our particular district, but ten minutes from our home.
I remember attending the meeting and hearing all kinds of promises, how they would take wonderful care of our son, how they had an "expert" in the field who would oversee the program, how they had special consultants, wonderful aides(which turned out to be true), and a teacher that brought along with her a terrific resume and reputation. It all sounded too good to be true, however, I went in with an optimistic attitude, so grateful to know that he would be close by.
We spent the last weeks of that summer preparing Mikey(and me), for his new school. I spent my days doing what most moms do, buying school clothes, sneakers,school supplies, etc. The only difference was that I also had to send in pull-ups,wipes, and special snacks. Mikey had been doing very well in the personal hygiene area, but like many other children his age and in his situation, was not yet fully toilet-trained. Again, my mind started to wander. I did not like the idea of anyone else working with him on such a personal level. Yet, I had to put my fears aside, and try to trust these people that I hardly knew. Not an easy thing to do.
The staff that I had met at the meeting seemed like a very nice group of people, and the aides, were all moms like myself, and they appeared to be excited about the program. Once again, I had to give up that control that I was desperately trying to hold on to, and learn to trust these women.
The other thing that was making me uneasy was the part of the program that dealt with using edibles as rewards. This had also been used at the preschool level,and I was not a fan. The program was an ABA program, which means Applied Behavioral Analysis. In layman's terms, that means a child is asked to repeat the same thing over and over again, until they felt he had mastered the word he was learning, or the task he was learning. As a reward for being compliant, the child is often given something edible, such as an m&m, or a piece of popcorn, or a chip. This irked me to no end.It reminded me of Pavlov's dogs, and my child was not a dog. Aside from that, who eats one m&m , or one piece of popcorn? The one complaint I had about the preschool was that they had utilized this often, and rewarded Mikey with gummy fish, or jellybeans, which unbeknownst to me , was leading to cavity after cavity. In my mind, food was something a child should never have to work for ,never mind having to repeat the same word twenty times for a lousy few m&ms.
I tried (honestly, I did try), to push all of my concerns aside and focus on what was best for my son. We drove him by the school a few times, showed him the playground, told him the names of the other boys in the class, and gave him as much of an introduction as possible. When the first day of school had finally arrived, I was ,yet again, feeling sick to my stomach, but Mikey was as happy as could be. I wondered if he would be thrown off when the bus went to a different school, and when different teachers greeted him at the door. When the bus pulled up, Mikey met his new driver and matron, and happily boarded the bus. I also noticed that he was the first one on the bus,because all of the other kids lived closer to the school.I wasn't happy about that either.
How my heart ached as his bus pulled away and his precious little face was leaning against the bus window smiling at me. I turned away , and did what I always did....I followed that bus.
Saturday, January 26, 2013
When a typical child enters kindergarten, he or she is usually able to speak clearly, make his/her needs and wants known, and communicate well. This was not the case for our son. He was not able to tell us that he had a headache or an earache. He was not able to tell us how his day went or why he was upset about anything. He also, was unable to write, so his means of expressing his feelings were extremely limited. His
verbal limitations led us into an unfamiliar territory of headbanging.
I remember one Sunday, my father-in-law was visiting, and we were having a relaxed conversation. For some reason, Mikey became visibly distressed, although I could not figure out why. Mike's dad was getting ready to leave, and I was trying to walk him out of the house before Mikey's mood worsened. As we headed toward the door, I sat down on the staircase, hugging Mikey, hoping to soothe him. In an instant, he pulled his head back and thrust it forward into my head with such force, that my eyes immediately teared up.
I was stunned, and oddly enough , my feelings were hurt. Mike's dad didn't know what to do, and just looked at us with the saddest eyes I had seen in a long time. My husband heard the commotion and came in from another room to help. Then as fast as it had happened,he calmed down, looked into my eyes, and hugged me as tightly as he could. I do not know if he had felt bad for his actions, or felt bad when he saw my tears, but I do know that he felt badly. I held him tightly, and assured him that everything was okay, but continued to whisper in his ear telling him that it was not okay to hurt mommy or anyone else with his head.
About 20 minutes later,Mikey had gone back to his usual jovial self. Yet, Mike and I could not figure out what had caused the aggression. We guessed at some possible causes, but could not be sure of any of them.While we sympathized with how difficult it must have been to not be able to verbally express his emotions, we also knew that we could not let that type of behavior continue. We had to figure out what had triggered this behavior, and how to handle it in a better way. Sounded great in theory, but in real-life, it was a completely different story.
Friday, January 25, 2013
territory....that of sensory issues.
Mikey had started to play with his hands a lot. He would clench them together, rub them into one another,and pull them closely to his face. He was doing this so often that his knuckles had become swollen and the skin on them chafed. Of course, I asked the doctor if he could permanently damage his hands,but he didn't believe that would happen.
While these behaviors never bothered us at home, the teachers at school had always tried to replace them with other more appropriate behaviors. You see, these odd movements, or frequent body motions are known as self-stimulatory behaviors, or "stimming." When I first heard the term, I thought it was x-rated!!! I later discovered that such behaviors occur because they give the child some level of euphoria, or comfort that they crave.Knowing this , it seemed odd to me that we should try to take these comforting behaviors from him, and replace them with other behaviors that might not provide him with the same feelings. I understood that the therapists wanted to do this in order to help a child "fit in", so to speak, but it kind of reminded me of taking a child's favorite toy, or blanket from him before he was ready to give it up.
Of course, we wanted to help him in any way we could, and would have been happy if these "odd behaviors" didn't exist, but they did. I couldn't help but think about how I would feel if someone worked with me everyday to change so many things about myself. Imagine just being you , and doing what comes naturally for you...then a group of therapists and teachers step in each day to change all of those things. Trying to replace things that comfort you with new things that you might not crave. Trying to get you to change so many things about yourself. Basically, sending a message to you that you are not quite right or good enough the way you are,and all the while, you cannot speak or express your unhappiness or desire to resist it all. Welcome to the world of autism.
Thursday, January 24, 2013
I have had many parents tell me that they are afraid to travel with their special needs children because it was not part of their normal routine. Others have expressed fear, explaining that the possible "meltdowns" would be too stressful for everyone. Other families just go with the flow. We never held ourselves or our children back for fear of what anyone else would think. That truly did not matter to us. We had taken a vacation every year, as well as spent all of our summers at the beach with the boys. For us, it was very important to expose not only Mikey, but all of our children to as much as possible. Fortunately for us, Mikey loved to travel, and was always up for an adventure. I remember one mom telling me that she never takes her child ,who has autism, to the beach for fear of him running away(or eloping, as it is known in the world of autism). While I certainly understand that each child and situation varies, I could never imagine limiting our child or our family like that. Mikey loved the water, the beach, and vacations....so off we went.
On this particular trip, the weather was quite warm, our kids were quite young, and of course, we had the occasional meltdown or two. I remember one day we had a rough time in the parks with the kids.They were all moody, and Mikey had become highly agitated about something. Mike and I decided to head back to the hotel for a much needed break for everyone. I was very tired, and was talking to him and asking him if he thought that our lives would be this way forever, meaning ,would we have to deal with meltdowns well into Mikey's adult life. While I was not feeling sorry for myself or us, I was definitely complaining a bit. We continued to chat about it as we waited for the elevator. When the elevator opened, we stepped on and found another family ,who had a few children, one of whom was in a wheelchair. I do not know for sure, but I assumed that the child had either cerebral palsy or some type of brain damage. As we rode the elevator,I listened to the child moan,make gurgling noises, and noticed the difficulty she had with any type of movement. My heart sank. Mike and I both gave the parents warm smiles, and they exited the elevator at the next stop. As the elevator doors closed, Mike looked at me and said," see,things could be a lot worse."
It is moments like that ,which truly put us in check, and put everything in perspective. Life could be worse. As a matter of fact, it really wasn't bad at all. We were the parents of four beautiful boys, who were all healthy. Yes, Mikey had autism, and had difficulty communicating, but physically,he was perfect. We were very fortunate,and throughout the years, I have reminded myself of that over and over again. Have we been leading a typically normal life? No. Have we had our share of difficulties along the way? Yes. However, as crazy as it may sound to some, we knew how fortunate we were. We were actually quite blessed.
Monday, January 21, 2013
Prior to graduation, we met with several of the teachers on Mikey's team....we loved them all , but as always, there had to be one that felt the need to burst our bubble. I will not disclose in what capacity this person worked with us , as this is not a blog meant to attack or belittle anyone, but I will say this again, some things truly are better left unsaid. I met with this person to discuss my son's progress and plans for the future. The conversation went well until she turned to me and said...." You realize he will never speak, it is not going to happen." Now, anyone who knows me well knows that when you tell me something will never happen, that I will do my very best to make sure that it does indeed happen. I simply responded by saying" and of course, you realize that you have absolutely no possible way of knowing that to be true. You are not God, and you are merely giving your opinion, one which I do not appreciate at all." She went on to apologize, saying that she meant no harm, but to me , that was all nonsense. She had children that could speak. She had no idea what this was like. There was no way in hell I would ever let her or anyone else try to take away our hope for his future. No way .
A few days after the meetings, we prepared Mikey for his big day. It was just adorable. The kids were dressed a little fancier than usual, and they were all lined up and ready to march into the auditorium and sing
some special songs(those that were able to sing). Many of the children there had sensory issues, so some were super-excited, some were cranky, and some nervous. When our Mikey entered the gym, he was in tears....I think his emotions had gotten the best of him. He would cry, then laugh, then cry, but all the while, he looked so sweet and innocent. It didn't take but a minute for me to be in tears as well.
He made it through the ceremony, and we went back to his classroom for the celebration. By this point in time, we were a family of six, Sean being our latest blessing. The boys were all with us,and had fun in the classroom. We then said our final farewell and left. We were relieved to have made it through graduation, but the feeling of
uncertainty and new beginnings once again flooded my brain. That week, I would be attending a meeting to discuss the kindergarten plans for September.... again moving from a comfortable daily routine back to the unknown...this became the story of our lives.
Sunday, January 20, 2013
I remember walking in one day to visit, and there was my Mikey ,seated at the teacher's desk with his feet up on the desk!! They were all so amused that he thought he was running the class, while making himself quite comfortable at the same time. In all honesty, these ladies did a great job working with Mikey. The school itself, was full of terrific, caring individuals who displayed a tremendous amount of patience. There were field trips, carnivals, and plenty of special events. Knowing that we would only be able to send him there for a short time made me a bit sad. You see, this particular school only accepted the children up to
kindergarten age, so it would not be long before we found ourselves in search of the perfect school again.
Until that time, I was going to take comfort in knowing that he was in good hands.
There are many things that a parent of a special needs child worries about when sending a child off to school. As I had mentioned before, Mikey did not speak, so I really had to rely on the people working with him to tell me what had happened each day. This required a tremendous amount of trust. I, am not necessarily that trusting, especially when it comes to my children. So , while we used a "communication notebook" to send messages back and forth each day, Mike would often stop in on his way to or from work to check in and make sure all was well. What I loved about this school is that it had doors so that we were able to see what was going on in the classroom, but the people in the classroom were not able to see us. This
let us know that they were indeed going about their normal daily activities, and not just putting on a show for visitors.
There is also the issue of potty-training, which in most special needs cases comes later(sometimes much later) than with other children. The idea of having someone else change his pull-ups, and work on potty training with him , was extremely unnerving to me. I wanted to be sure that he was being treated respectfully, kindly, and that is why Mike made so many unannounced visits.
Saturday, January 19, 2013
Chris would be the first one out the door that morning, so I took him to school, made sure he found his teacher, waited with him on line, and kissed him goodbye as he headed into his school. As I turned around to head home, my stomach was turning. I was now going to send my Mikey off to school for the first time,and it was literally making me sick to my stomach.
I went back home and started to get him ready. He looked so handsome. He had on a special name tag with his name as well as his new teacher's name on it. His teacher's name was Ms. Thomas....would she be nice, would she care for him like I did, above all, would she be patient? As always, my mind raced all morning.
Mike had stayed home that morning so he could see the boys off on their first day. I remember telling him
to make sure he remembered the number on the side of the bus, so when we followed the bus to the school, I would know which bus was his. Yes....we followed the bus to school. I just had to. I had to see my son make it to school safely and enter the building. After Mikey was all ready, Mike took him outside and they sat on the porch together waiting for the bus to arrive.
We found a spot across the street from the school and watched as his bus made its way around the school driveway. " Can you see him...is that him....did he get out yet?" Mike answered me patiently, knowing how nervous I was. Then we saw him....my sweet little boy exited the bus and entered the building. My big boy had just entered school for the first time. My eyes welled up with tears, as we pulled away from the school.
Once we were home, I made sure to keep the phone by my side all day...just in case. It never rang.
As the day went on, I found myself watching the clock, and was outside waiting for the bus about 30 minutes before it was even scheduled to arrive. When I finally saw that bus turn onto our street, I felt such a sense of relief...he was back. Mikey came off of that bus with the same big smile he had that morning. The bus driver told us that the teacher said he had a great first day. I hugged and kissed him and took him inside.
I eagerly went through his backpack, and found a lovely note from his teacher telling us how his day went. I was also happy to see that we were already invited up to the school to see how things were going and to meet everyone. I was pleased to know that the day had gone well, yet I still turned to Mike and said" do we really have to send him back again tomorrow?" Of course, I knew we did, but this was not an easy adjustment for me.....I really missed my boy.
Friday, January 18, 2013
to a local therapy center where he would receive his speech and OT services. This meant that we would not have a parade of people in and out of the house each day, and it was nice to get Mikey out and about.
Having three little children and one on the way, did not necessarily make this an easy task. At the time, my husband had his own business,which meant that he was able to help out when necessary. Every morning, Mike , who is a contractor, would get up at the crack of dawn, go to his job site, set up the materials and his employees, and come back home. He would then take Mikey to therapy, and when he was finished, he would head back to work until the work day had ended.
This would be our routine for quite awhile. We loved the new therapists, and Mikey was doing very well.Mike would stay with Mikey and watch his daily therapy sessions. We were not about to drop him off and leave until he was finished. I must say, that I was very proud of my husband for taking such an interest in all that the therapists were doing with our son. He would come home so excited each day with Mikey and
explain to me all that had happened that morning. He was so pleased to see Mikey making progress, and to actually be a part of it all. I have to admit , not only did this warm my heart , it helped me tremendously on the homefront. Taking care of three little rambunctious boys was hard enough, doing it while pregnant was even more difficult.
As the months passed, it became clear that it was time for us to decide where we would send Mikey to school. For most parents, this is a no-brainer. Children go to the local school, make friends, and so it goes. This was not the case for us. Our son Chris was already enrolled in our local school, but Mikey, was going to require a special-needs preschool in order to have all of his needs met. Many of the schools that had been suggested to us were not in our local area. This just didn't sit well with me. I was having a hard enough time
sending him off to school on his own,and could not even imagine sending him on a bus to travel 30-45 minutes to a school. What would I do if he became sick? How quickly would I be able to get to him? Again, my mind was going 90 miles per hour. What really worried me more than anything was the fact that my son did not speak, and therefore was unable to tell me what had gone on each day.
Think about that for a moment. The thought of putting him on a bus, with people I did not know, sending him off to a new school, with people I did not know, gave me heartache that was beyond belief. If anyone bothered him or hurt him, he could not tell me. I knew that we had to find someplace local, somewhere that was close to home, and where we could visit at a moment's notice. We did our research, and found the perfect place. Unfortunately they had all of their classes filled, and did not have a spot for our son. I was disheartened to say the least, but not my husband. He sprung into action, and visited that school on a weekly basis. He called daily, and laid on the charm. Within weeks, we received a call telling us that they had an opening for our son!
We were both so pleased to receive this news, but I do remember being extremely anxious. There were still so many "what ifs," and the thought of him being away from me all day made me sad. However, I knew this was what was best for him, and I would have to adjust. Our family was about to undergo some major changes, and I just had to buckle up and get ready for the ride.
Thursday, January 17, 2013
Here is how this process works. If you have a child who has a learning disability ,or has special needs, you meet with the Committee for Special Education in your school district. Together, you discuss what is best for your child, and an IEP, or Individualized Educational Program is developed. This is the plan that the teachers follow in order to help your child learn to the best of his/her ability. We had our meetings, developed a plan, and the teachers began working with Mikey.
To be honest, I did not enjoy the parade of teachers. They were all nice enough, but it changed our daily schedule, and I had to keep my son Timmy away from all of the fun toys they were bringing into our house.Not an easy task. However, if there is one thing I have learned throughout this entire journey it is this...it was not about me, and it was not about Mike,our schedules, or anything like that. It was about Mikey. We would have gone to the ends of the earth in order to help him. With that in mind, we continued
with our new daily routine.
Mikey loved OT, as I think most kids do. His teacher was a bubbly, young girl, who seemed to enjoy her job. For speech, I actually took him to the teacher's office, which was about five minutes from our home. I liked this teacher, she was a sassy lady with a bright smile, and Mikey liked her too.His special education teacher started out fine, but somewhere along the line, I sensed that something was not right. Eventually, she left, citing personal health issues, so now we were in search of a new special education teacher. Then we met the teacher who I felt really cared about Mikey and his situation. Her name was Amie ,and she would be his new special education teacher. She did a great job with him, and showed such interest and dedication.
Months had passed,and things were moving along nicely, but I began to sense that the speech teacher felt that she was not making any progress. She seemed frustrated at times. I think that may have been because the majority of children she worked with only had speech issues, they did not have autism. It was just a gut feeling, but as my husband can tell you, my instincts are usually spot on. I remember taking him to speech one day after I had discovered that I was pregnant with my fourth son. Near the end of our session, I wanted to tell her that I was indeed pregnant, because our sessions were early in the morning, and I was usually very sick. If I needed to eat crackers in front of her, I did not want her to think I was rude, so I told her. Her answer blew me away." Oh no, this is the last thing you need!" I couldn't believe my ears, and here I had been worried about her thinking I was rude! I went on to tell her how we were all thrilled about the pregnancy, and that Mike and I had always wanted four children. She looked at me ,sort of dumbfounded, and she finished up with Mikey.
As we left that day, I had a few things going through my mind. Do people think before they speak? Do people realize that just because you are thinking something doesn't mean you have to announce it? Do people understand that just because you have an opinion, that does not mean everyone wants to hear it?
I loved all of my children, including the one I was carrying. Mike and I considered it a blessing, and if she did not, too bad. I decided right then and there, that it was once again time to make some changes.
Wednesday, January 16, 2013
The agency I spoke with explained to me that a lady would come to our home, meet with us , and play with Mikey for awhile. Based on her findings, we would set up a schedule to receive whatever services she deemed necessary for Mikey. I figured we would probably be looking at a few hours of speech a week.
The day of the visit, the lady arrived, and she was nice but not overly friendly. Again , we answered a bunch of questions, and she proceeded to play with Mikey. When she placed certain toys in front of him, he would show a fair amount of interest, but he was much more interested in whatever else she had in her bag.
I figured this is just a toddler being a toddler.....she thought differently. In all fairness, I did witness Mikey climbing over her in an attempt to find whatever it was he was looking for, and he had no intentions of stopping until she let him look into her bag. This, as I was told, was not "typical" behavior.
She stayed with us for awhile, finished up the evaluation, and told me she would call me in a few days with the results. When she did call, she explained that based on her visit with us, it had been determined that Mikey would need "intensive" therapy....at least 25 hours per week.She had conducted some type of test with him and on a scale of 1-60, he was a 30-31. This meant he fell right smack in the middle,in the "mildly autistic" range. She suggested a variety of different preschools for children with special needs, and left me with her phone number in case I had any further questions.
After I had hung up the phone, I remember calling Mike to tell him."This one is crazy if she thinks I am sending my son to some school for 25 hours a week for intensive therapy!" All I could think was here is another "expert" giving me her opinion of my son after a 1/2 hour visit. Clearly , this was all getting to me, and clearly , I was not yet ready to accept it all. I am , by nature, very protective of my children, as most parents probably are. I had a hard enough time sending Chris to pre-school when he turned four. Fortunately, his pre-school was right on our corner,so I knew he was right down the block. I didn't like the idea of sending my almost three year old anywhere on a bus far away from home. In my mind, that just was not an option. I was more than willing to get the help he needed ,but I wanted to have the teachers come to us.Mike and I both decided that this would be the best way to do things...this way, I would be able to watch how the teachers worked with him, and monitor his progress.I would call the next week to make all of the arrangements.
About a week or two after the educational evaluator had visited my house, I was in a party supply store with Chris and Mikey. I remember waiting on the check-out line and looking to my left only to see the educational evaluator and her daughter. Our eyes only met for a moment or two, but I could see the sympathy in her eyes as she looked at us. It bothered me greatly. I did not want or need any sympathy from her or anyone else. I did not like this lady, but was it because I didn't find her friendly, or because she told me the truth?
Tuesday, January 15, 2013
Sitting in that waiting room made me sad, but not for us or Mikey. There were so many children in there
with serious problems, and my heart went out to them. One little boy was playing beautifully with some toys on the floor, but every few minutes his body would twitch in what was obviously an uncontrollable way. I assumed that it was Tourettes, but I may have been wrong. I did not want to stare, or make his parents feel uncomfortable, so I only glanced over in their direction every now and again. I found it interesting how his
movements had almost a timed rhythm to them. His family was obviously on a difficult journey of their own.
When it was our turn, we met the doctor in his office and he asked us a variety of questions. He was nice enough, very matter of fact,had a bit of an accent that was tough to make out at times, and seemed very rushed. I do not remember our entire conversation, but I do remember him telling Mikey that he needed to make sure he behaved because he was putting him on probation....I think it was an attempt at a joke, so I took it in stride.He'd see us again in six months.
When all was said and done, he told us that he was leaning more towards PDD, Pervasive Developmental Disorder. He gave us a brief definition, and suggested that we get an MRI of Mikey's brain. He told us that he would send a report over to our pediatrician and would speak with us after the MRI results were in. We thanked him and left.
Mike put Mikey in the car and I ran into the pediatric office to speak with them for a moment. I had a great relationship with our pediatricians because I had worked for them for ten years. Two of them met with me right away, and I remember them being quite anxious to hear what had happened. I told them, and I could see in their faces that this was not what they had wanted to hear. They had an office full of patients, so I left, knowing they would call me later.
That afternoon, the doctor did call and explained things a bit more. I remember him telling me that all children with autism have PDD, but not all children with PDD have full-blown autism. He then gave me a great analogy, which unfortunately , I do not remember. He also told me that Mikey's blood work had come back and nothing was really out of the ordinary. He had been tested for a variety of things including food allergies( specifically gluten and milk), as well as Fragile X , a more severe form of autism, one in which children have a very distinct look or facial features. All negative.
So at this point, nothing was conclusive, and we knew we were dealing with some type of developmental delay, but nothing had been written in stone just yet. If anything, this doctor at least gave me a glimmer of hope, and didn't come at me like a freight train. We still had to make an appointment for an MRI, but I was starting to think that maybe I wouldn't, and I didn't. Instead, I began to do a little research of my own. I had already grown tired of being rushed or treated in a rude manner when I was asking questions. If the doctors didn't have enough time or consideration to answer, I would find out the answers for myself, and that is exactly what I did. I also never stepped foot in any neurologist's office again.
Monday, January 14, 2013
As we pulled up to our house , I knew that as soon as we entered , the questions from family members would begin. How was I supposed to answer anyone else's questions when so many of my own had
not yet been answered. I took a deep breath, and opened the car door.
"Well, what happened? What did the doctor say? Is everything okay? He's fine, right?" I found myself responding, with a trembling voice, that we really don't know yet, and I really didn't want to talk about it. I
went in , sat in the living room, looked at my three boys, and the tears just came. I excused myself, and went up to my bedroom,locked the door and just cried and cried for about 20 minutes. Then as fast as I started, I stopped. I told myself, that we had only received one doctor's opinion. We needed another opinion. I would go ahead and get all of the blood tests, but I was definitely going to see another neurologist. I wiped away the tears, and pulled myself together. I had three children to take care of, and was not about to let them see me break down.
By the time I went back downstairs, it was only Mike and the kids who were home. I was relieved that I didn't have to get back into the hot seat and answer another fifty questions. For the rest of the evening, as we played with the boys and had dinner, Mike and I just kept looking at each other as if to say "what the hell is going on? How did all of this happen? Where do we go from here?"
After a long, emotionally draining day, we put the kids to sleep, and finally spoke about what had happened. Now, most people who know me know that I can be stubborn at times. I am my own person, and have never really followed anyone else's lead. I make my own decisions, and go with what I believe is right for me, and in this case my family. This situation would be no different. I would call the pediatrician in the morning, make an appointment for the blood tests, and find another neurologist, who I hoped, would give me a very different opinion.
By 9:30 the next morning ,I had appointments for the blood work as well as with a new neurologist. This time, we would be seeing the head of children's neurology at LIJ Children's Hospital. Another week would go by before we had our second opinion. In the meantime, I just went about life as usual, with the only difference being that I had an ache in my heart that I had never, ever experienced before.
Sunday, January 13, 2013
put it out of my mind, and kept telling myself that everything would be fine. My heart wanted to believe that, but my head knew better. We went for the 2-1/2 year check-up , and we were all in agreement that the time had come to see a neurologist...just to be on the safe side. Our pediatrician recommended a neurologist, and told me that while she did not accept insurance, she really was the best around. I called when we got home, and we made the appointment. We had to wait two weeks...a very long two weeks.
By this point in time, I was a mother of three beautiful boys. Timmy arrived just 20 months after Mikey, and was a very sweet, alert baby. Chris was in preschool now, so we had a family member come over to watch Timmy while Mike and I headed to the neurologist's office with Mikey. Our conversation in the car basically consisted of Mike trying to reassure me that whatever the problem was, we would face it head on and make the best of it. My end of the conversation consisted mostly of denial, you know, I am sure he is okay, this is just another waste of an afternoon. Turns out Mike would be right, not me.
Again, we were filling out a mini-novel of our family history, health information , but no insurance information. The visit would be $350 cash. We had it, but what kind of doctor doesn't accept insurance, I mean really? What happens to the people that cannot afford it?
We waited to meet the doctor, but instead of being called into an examining room, she came into the waiting room and just sat down, watching Mikey. She didn't even introduce herself at first. He was playing with some blocks, and she just watched and watched. I just sat and watched and watched her. Finally , she introduced herself, and asked us to enter the examining area.
Once in the examining room, she checked Mikey's eyes, ears, limbs, belly, you know , the usual. She then watched him walk around the office. She asked us a few basic questions, then asked us to meet her in her office.
We sat down in the office and she asked us to give Mikey a book. She wanted to see how he used it. We did, he fumbled through it, but apparently not to her liking. She again asked Mike and I a few questions about each of us,our family histories, did we drink, did we have a drug history, etc. Then she wrote down a few things and looked up quickly from her paperwork.
"Your son has autism." Whack! You might as well have hit me in the face with a two by four. "What?", I replied....she said it again.." Michael is autistic." My mind went to twenty million places at once. As far as I knew, children with autism didn't smile, they showed no emotion, they didn't laugh..that was definitely not my son. My son loved to snuggle, had a sense of humor and was happy.....this doctor, in my opinion ,was crazy.
Common sense took over and I began to ask questions...how did he get this,was it genetic, how is it treated, should I have any more children? She answered , assuring me that it wasn't genetic( which I still to this day do not believe, but more on that later), and explained that I should have him go through an educational evaluation to determine what services he would need.She gave us a list of blood tests she wanted to have done, and gave us her last little words of wisdom.
We listened, scooped up Mikey, thanked her( well , my husband did, I was too angry to even look at her),and left the office. As we headed to the elevator, Mike looked sad, Mikey was happy as could be, and I was furious.....I was mumbling about how she charged too much, had no bedside manner whatsoever, and had no idea what she was talking about. The ride home was long and quiet.
Saturday, January 12, 2013
I filled out a questionaire, and we waited our turn.
When we were finally called in, I was told that we would go into a booth together, and Mikey would be seated in my lap. The person conducting the test would make noises that could be heard inside the booth, and they would watch Mikey to see if he reacted to the noise. Seemed easy enough, so we stepped into the booth.
Let me explain to you how this test went. After we were seated in the booth, I noticed two little monkeys with cymbals in the upper right and left hand corners of the booth. The lady outside the booth would push a button, the monkey would clank a cymbal, and the lady would watch Mikey. Now, call me crazy (and some do,believe me), but I couldn't see how conclusive this test could be....the monkeys moved each time they made a sound, so even if he didn't hear it, he sure as heck saw it move. Needless to say, he reacted to every noise/movement. The test was over, and out of the booth we went.
The lady working with us then tried to place some type of scope attached to a machine into his ear in order to evaluate him further. It was similar to a tympanagram. As most parents know, getting a two year old to sit still while you stick something in his ear is not likely to work, and it didn't. The test was therefore concluded ,and we went on our way.We spent more time in the waiting room than we did getting the test done.
A few days later , my pediatrician called and said exactly what I had thought...his hearing appeared to be fine.I really wasn't worried about his hearing because I could call his name from a different area of my house, and he would always come and find me. I was happy, but at the same time, kind of annoyed that we had wasted an entire morning.
Later in the week, my father-in-law stopped by. He usually visited us every Sunday afternoon, and we would have dinner or just chit chat. We were all sitting in our living room, and Mikey was sitting in front of the television watching one of his favorite shows..he was completely immersed in the program. My father-in-law
proceeded to call Mikey's name, but Mikey did not respond. After calling his name about five times, he turned to me and said, " What's the matter? He can hear, can't he?" Now, I had a great relationship with my father-in-law, and we had always been close. I do not know what came over me ,but I found myself becoming extremely defensive. I said " Of course, he can hear, we just had him tested." I know he meant no harm, but all I could think to myself is...wow, this is rich coming from the man who raised my husband. My house could burn down around my husband and he would never even notice if he was watching tv.....it must be a male hereditary trait! Now I love my husband more than anything, but I think most women would agree that getting any male's attention while he is watching tv is no easy task.I went into the kitchen, took a few deep breaths, and went back into the living room with everyone, acting as if the comment didn't bother me, but it did.
When I think back as to why I became defensive that day, I think it is because even though I knew his hearing was fine, I still had not been getting any words out of him, and I still had that feeling that something was not right. Well,I am going to say something that will probably be repeated over and over again throughout this blog...never mess with a mother's instinct....it is usually right.Unfortunately for us,it would not be long before I found out that my instinct had been right all along.Something was wrong, and we were about to find out exactly what it was.
Friday, January 11, 2013
At any rate, Mikey was about as well behaved as any baby could possibly be. He really was(and still is) a sweetheart. His slept fairly well, ate well,hit all of his milestones on time and genuinely seemed happy. All was well.As you can see in the pictures below, he was (and still is ) always laughing.
Around the time that Mikey was 18 months old, I was seven months pregnant with my third child. We had driven from Long Island down to Litchfield Beach, SC to attend a family reunion. I remember the family wanting to get everyone together to take a family picture. Mike(my husband) , and I got the boys ready and headed over to the house where the picture would be taken.Mikey was happy that day, and seemed very content.There was a party going on at the house, and the music was fairly loud. As we entered the backyard, I picked him up, and he vomited all over me.Needless to say, he and I had to go back to our room get cleaned up and changed. He seemed fine again, and I was left wondering, what happened. Did the music frighten him? Seemed unlikely, because he loved music...maybe it was too loud?
Now, babies vomit, they get frightened, these really aren't unusual events. In retrospect, I do know that when these things did occur, my gut instinct told me something wasn't right..however, he was always given a clean bill of health, and always seemed happy, so I never made it into a big deal.
Fast forward to Mikey's two-year check-up. Physically, he was perfect. However, we were not hearing many words yet. He babbled like crazy, laughed a lot, and seemed genuinely happy. The doctor asked me a few general questions, and we decided that I would set up an appointment for a hearing test,just to be on the safe side.I was not worried, as Mikey always reacted to sound, so I was pretty sure that his hearing was fine. He also told me that if we didn't have any words by his 2-1/2 year old check-up, that I should consider having him evaluated for speech issues( in my heart now, I know the dr. was thinking autism, but I sure wasn't). I agreed. I went home that day, and scheduled a hearing exam...we would go the following week. Little did I know that this would only be the beginning of our roller coaster ride.
Wednesday, January 9, 2013
Let me tell you a little bit about our family. My husband and I have been married twenty years, and are the proud parents of four beautiful boys. Our second oldest child, Mikey, was diagnosed,or should I say , assessed when he was almost three, and it was determined that he had autism. I will shed more light on how all of that went down later on, but as you can imagine, that was a life-changer. Now, some might say that something of that magnitude could turn your world upside down, and it has, but not in the way you might expect. Our lives have been and continue to be changed for the better.
As I share daily/weekly posts with you, I hope that you may come to have a better understanding of not only autism, but about what is truly important in life. If you do not know anyone affected by autism, perhaps you will gain more insight. If you do know someone affected, perhaps you will develop more understanding.
If your family is affected by autism, perhaps this will be a place for you to share your stories, and know that you are not in this alone. Having said all of the above, my greatest hope is that you will read this blog and smile, laugh, and realize that life can hit us hard, but it is only when we allow ourselves to be knocked down and stay there, that we are defeated. My family always gets back up....we will not be defeated. We choose to love, laugh, have fun, and find joy in our journey.I hope you will join us on our journey , and smile along the way.
Here we go.........