There was a time in our journey with our youngest son when my husband and other family members were in denial that there was anything wrong with him. It felt as if I were on the journey to find answers and solutions by myself. The solitude of that journey made me question if I was the one who was wrong about our son, his development, and his learning. Time has proven me right. Throughout our journey with our son, I have striven to be honest with myself about who we are as individuals and as a family; how I feel about our son, myself, and our family; and the effort that I have put forth. Recent events have once again made me have to take a step back and have an honest conversation with myself about our son and our reality. This hasn't been an easy conversation for me to have with myself.
The past year has been extremely stressful for me. A job transfer, a lengthy daily commute, and multiple teacher/union strikes has increased the stress of an already stressful life. I've had to rely/depend on my oldest son and husband to take over many of the responsibilities that were previously mine. Transitioning our son through his final year of elementary through a teacher maternity leave and a teacher medical leave has added to that overall level of stress. I've tried very hard to keep life moving forward but my energy is waning and my stamina is dwindling. Recently, I've felt as if I'm treading water without the ability to reach the shore.
As I stated earlier, my husband used to be in denial that our son was different from his same age peers. He felt I just needed to give our son more time to grow up. He felt he was just developing more slowly than his friends. As a trained educator, I knew what I was seeing was not typical development. Recently, it's as if my husband and I have reversed roles. Today, he sees our son clearly for who he is and how he operates in this world. He takes great joy in watching him negotiate life on his terms. On the other hand, I seem to be stuck in who I want him to be, who I imagine he can be. Recent events have made me have to face this fact with honesty.
Monday evening, my husband, son, and I went to watch some of my preschoolers play in their first t-ball game. Our youngest son was so excited to meet my co-teacher and some of my students. Once we arrived, he launched into his typical manic whirlwind of movement and talking. He touched people; stood in front of them; invaded their personal space; and talked to them without knowing who they were. My husband took it all in stride. I found myself feeling very anxious. What were people thinking? Did they notice how age inappropriate his behavior was? Did people notice his stuttering and drooling? I was so afraid that people would see his large stature and poor social skills and say or do something to hurt him. We were outside our typical circle of people who know, love and accept him. I was nervous for him. For us.
Today, we attended our son's fourth grade play. He was so excited. It was all he talked about for days. He came bouncing into the cafeteria on his toes, in full George Jefferson strut, arms waving in excitement and victory like "Here we come people. Are you ready for us?". From the time he entered the cafeteria, I was on full alert and nervous. His face was covered in marker from the marker he had all over his hands. In his excitement and nervousness, he kept fidgeting with his face, nose, and mouth. The more he fidgeted, the more marker showed up on his face. He fussed with his mask he was supposed to wear. It was up. It was down. He took his glasses out of his pocket and put them on. He took them off. He put them on. They were on the end of his nose. They were falling off. At one point, as he danced and sang, he kicked a girl in front of him. Of course it was the mean girl from the bus who delights in making him cry. She turned around and yelled at him. (Yes, in the middle of the play.) That resulted in him crumpling into a crying jag. (Yes, in the middle of the play.) I wanted to console him and tell him it was okay. I wanted to tell her to stop being so darn nasty and evil to him all the time. Instead, I sat in the audience, helpless to help him work through this moment. Fortunately, the boy beside him and the girl directly in front of him consoled him and calmed him down. They gave the mean girl dirty looks whenever she looked back at my son and smiled. They were amazing. They did what I wanted to do. They help my son work through the bad, sad moment, and come back to his joyful self.
In recent weeks, I have had to have some honest conversations with myself. Why do these moments make me so nervous? Why do they have me on the edge of my seat so to speak? A large part of it is genuine love and concern for my son. I don't want his heart to feel the hurt of other's judgment and disdain. He genuinely LOVES life and LOVES people. If you had the opportunity to meet him, you would see his true affection for everyone he meets and the joy he brings to simple daily activities. The thought of other people's hatefulness stealing that love and joy from him hurts my heart.
I also have to admit that there is a large degree of fear. Is this as good as it's going to get? Is this our normal? Is this all I can expect? Will he always be the guy that stands out in the crowd because he can't blend in? He stands too close. He talks too loud. He touches without regard for boundaries. Is this what the future holds for him? For us? Will he have a "normal" job? Will he be able to live independently? Will he be able to find love and marriage? Will he be able to hold onto his joy?
In the past, my husband was in denial and I stood strong and fought for our son. Now, my husband is a pillar of strength and resiliency as I struggle to cope with our son's reality. He laughs when I want to cry. He shrugs and moves forward as I fuss and worry. I cling to my sense of humor and laugh at the insanity that is our life. It's the only tool I have at my disposal these days. My laughter is often tinged with a trace of lunacy but at least I can still laugh. Until I regain my strength and stamina to stand beside my husband as an equal partner in this journey, I will pass the torch to him and laugh in the shadows. Better days are coming. I truly believe that. I just need to have faith and hold on until we get there.
Friday, May 13, 2016
Saturday, April 16, 2016
Attitude and Effort Are Everything
I'm going to offer a short disclaimer at the start of tonight's blog. I am certified in the state of Pennsylvania to teach N-3 (nursery to third grade), K-8 (kindergarten to eighth grade), and middle school and high school English and social studies. I also have my Masters in Education in Curriculum and Instruction. This is my nineteenth year teaching. The vast majority of my experience has been teaching at-risk populations of incarcerated youth. I am currently teaching Pre-K. I tell you all of that so that you understand that my opinion on this topic IS biased. I am a firm believer in the power of education. I speak the language so to speak.
Chuck Wilson is credited with saying "There are two things in life in which we have complete control... effort and attitude." We recently attended our youngest son's individualized education plan (IEP) meeting. As we left the meeting, this quote was playing through my mind. I firmly believe that our efforts and attitude have begun to positively benefit our son.
If you have read my blog in the past, you know that my husband and I have worked hard to education ourselves about our son's unique developmental cycle, learning styles and health issues. We have attempted to become experts on any topic that relates to our son and his development. To do so, we have read and researched; sought out expert advise; and asked lots and lots of questions. In addition, we have educated ourselves about the processes and steps at each stage of his life. For example, as a baby, we had to learn about home based therapy services. What qualified him or disqualified him for services? What were the steps needed for insurance to cover the costs? Which services did he need or not need? What were resources available within our area?
When he transitioned to preschool age, it required learning a whole new system and process. The qualifiers for services changed. The service providers changed. The insurance qualifiers changed. We had to learn a whole new process to meet his needs.
School brought a new system, new set of procedures, new laws, new service providers, and new people to once again familiarize with our son and his "quirks". We have learned to negotiate these changes and become advocates for his needs. Now it is time for another transition. Our son is transitioning from elementary school to middle school.
It is easy when you are negotiating all these different systems and people and processes to become overwhelmed and jaded with the process. The key is attitude. The key is effort. You need to have the attitude that we are a team working for the benefit of my child. You need to make the effort to educate yourself on the process and to be the best possible advocate for your child. When you view the people within the processes and systems as part of YOUR team for YOUR child, things get done.
When we first started the school age stage, we didn't know what we know now. We learned. One of the things that we learned is that our school year is more successful if we meet with his new education team at the start of the year to educate them about our son's unique qualities. Not everyone that has attended those meetings recognized that the information we were sharing with them would benefit them and make their job/lives easier. By the end of the school year, most of them did. We saw the looks that said "Oh boy, it's "those type of parents"." I understand those looks and thoughts because I've dealt with challenging parents. I've been where they are sitting. This difference is that I have empathy for even "those parents" because they are doing the best that they know how to advocate for their child. Attitude is everything.
Some people emphasize effort without remembering attitude. As a parent, you have to see yourselves as a team working together with the doctors, teachers, and support staff for the good of your child. If you persist with a positive attitude and put in the effort, the results will begin to pay off. For us, the results of our attitude and effort paid off in the form of a GREAT IEP that will accompany our son through his transition to middle school. It has paid off by team members paving the way for us by making contact with his new team by means of telling them to listen to us, to respect our opinions. It has paid off by the current team helping us to identify the key players in the new team to contact with questions and concerns. That doesn't just happen. Hard work and persistence make that happen.
We are transitioning to middle school with an IEP that presents a clear picture of who are son is and what he needs to be successful. It identifies the tools that have worked in the past to help him achieve his goals. It spells out in succinct and clear language what he needs and how he needs it. The care and concern for our son is clearly written in the language of that very important document.
If you are entering the school age process with a child with special needs, there are great resources our there for you to educate yourself on the process. Below are two very good resources for parents negotiating this process in the state of Pennsylvania. The Pattan website is a state sponsored resource that walks you through information you need to know about the IEP process. It also has resources linked on the right hand side on other topics that may be beneficial to you and your child. The second resource is from the Pennsylvania Department of Education. There are LOTS of other resources out there to educate yourself but I caution you to use vetted, proven, researched resources.
Find people who are willing and able to support your efforts. Find people who are willing and able to support a positive attitude when it comes to your child and his/her school. There are lots of people out there who are more than willing to listen to you vent negatively about your child's school, teachers, or administrators. Those people will not help you advance your child and his/her education agenda. Find people who will. Finally, the most important advise that I have for you is to believe in yourself as an advocate and expert on your child.
http://www.pattan.net/category/Educational%20Initiatives/Parent%20Information/page/Individualized_Education_Program_IEP.html
https://www.psea.org/general.aspx?&ekmensel=e2f22c9a_8_270_btnlink&id=496
Chuck Wilson is credited with saying "There are two things in life in which we have complete control... effort and attitude." We recently attended our youngest son's individualized education plan (IEP) meeting. As we left the meeting, this quote was playing through my mind. I firmly believe that our efforts and attitude have begun to positively benefit our son.
If you have read my blog in the past, you know that my husband and I have worked hard to education ourselves about our son's unique developmental cycle, learning styles and health issues. We have attempted to become experts on any topic that relates to our son and his development. To do so, we have read and researched; sought out expert advise; and asked lots and lots of questions. In addition, we have educated ourselves about the processes and steps at each stage of his life. For example, as a baby, we had to learn about home based therapy services. What qualified him or disqualified him for services? What were the steps needed for insurance to cover the costs? Which services did he need or not need? What were resources available within our area?
When he transitioned to preschool age, it required learning a whole new system and process. The qualifiers for services changed. The service providers changed. The insurance qualifiers changed. We had to learn a whole new process to meet his needs.
School brought a new system, new set of procedures, new laws, new service providers, and new people to once again familiarize with our son and his "quirks". We have learned to negotiate these changes and become advocates for his needs. Now it is time for another transition. Our son is transitioning from elementary school to middle school.
It is easy when you are negotiating all these different systems and people and processes to become overwhelmed and jaded with the process. The key is attitude. The key is effort. You need to have the attitude that we are a team working for the benefit of my child. You need to make the effort to educate yourself on the process and to be the best possible advocate for your child. When you view the people within the processes and systems as part of YOUR team for YOUR child, things get done.
When we first started the school age stage, we didn't know what we know now. We learned. One of the things that we learned is that our school year is more successful if we meet with his new education team at the start of the year to educate them about our son's unique qualities. Not everyone that has attended those meetings recognized that the information we were sharing with them would benefit them and make their job/lives easier. By the end of the school year, most of them did. We saw the looks that said "Oh boy, it's "those type of parents"." I understand those looks and thoughts because I've dealt with challenging parents. I've been where they are sitting. This difference is that I have empathy for even "those parents" because they are doing the best that they know how to advocate for their child. Attitude is everything.
Some people emphasize effort without remembering attitude. As a parent, you have to see yourselves as a team working together with the doctors, teachers, and support staff for the good of your child. If you persist with a positive attitude and put in the effort, the results will begin to pay off. For us, the results of our attitude and effort paid off in the form of a GREAT IEP that will accompany our son through his transition to middle school. It has paid off by team members paving the way for us by making contact with his new team by means of telling them to listen to us, to respect our opinions. It has paid off by the current team helping us to identify the key players in the new team to contact with questions and concerns. That doesn't just happen. Hard work and persistence make that happen.
We are transitioning to middle school with an IEP that presents a clear picture of who are son is and what he needs to be successful. It identifies the tools that have worked in the past to help him achieve his goals. It spells out in succinct and clear language what he needs and how he needs it. The care and concern for our son is clearly written in the language of that very important document.
If you are entering the school age process with a child with special needs, there are great resources our there for you to educate yourself on the process. Below are two very good resources for parents negotiating this process in the state of Pennsylvania. The Pattan website is a state sponsored resource that walks you through information you need to know about the IEP process. It also has resources linked on the right hand side on other topics that may be beneficial to you and your child. The second resource is from the Pennsylvania Department of Education. There are LOTS of other resources out there to educate yourself but I caution you to use vetted, proven, researched resources.
Find people who are willing and able to support your efforts. Find people who are willing and able to support a positive attitude when it comes to your child and his/her school. There are lots of people out there who are more than willing to listen to you vent negatively about your child's school, teachers, or administrators. Those people will not help you advance your child and his/her education agenda. Find people who will. Finally, the most important advise that I have for you is to believe in yourself as an advocate and expert on your child.
http://www.pattan.net/category/Educational%20Initiatives/Parent%20Information/page/Individualized_Education_Program_IEP.html
https://www.psea.org/general.aspx?&ekmensel=e2f22c9a_8_270_btnlink&id=496
Friday, February 19, 2016
Growth
After coming to the conclusion that our youngest son was in the midst of his longest developmental plateau to date, and resigning ourselves to the fact that this school year may not result in much growth, he once again changed the game. Our life with him seems to be a constant battle to see what will work for him and what will not. What will help him grow and develop? What will help him progress? What worked one week or one month isn't guaranteed to work the next. The rules seem to change like the seasons.
Fortunately, we have been seeing signs that this developmental plateau is transitioning to a minor developmental growth spurt. Our son has recently had a greater awareness of his social status among his peers. Although his blindness to this was beneficial in the past, it also kept him from having an awareness of what was really socially acceptable to his peers and what was not. It has been hard to help him negotiate this growing awareness that not everyone is his friend or has positive intentions for him. His social blindness shielded him to a large degree from peers who may have been prone to tease him or make him feel bad about his stuttering, blocking, and other less than socially acceptable behaviors. His new awareness, although painful, offers a degree of self-motivation to want to do better and change the behavior.
Until recently, our son had little interest in completing homework or staying caught up on his work. When you spend most days inside without recess because you are behind with your work, this becomes "normal" to you. Being kept inside because you are behind in your work or you need extra help, has little impact on someone who, more often than not, doesn't get the opportunity to go outside. any way. Recently, our son has taken an interest in staying caught up with his work because he has a buddy. He wants to be able to go outside and play with him and his other friends. Because of that desire to spend time with this friend, he has brought home math boxes that he should have finished in class and weren't assigned as homework. He's even snuck home essays and other writing assignments that needed re-written or finished so he wouldn't get further behind in class. This is a HUGE change. He cares about his schoolwork. He wants to do better.
Our son started the school year failing most of his reading tests and many of the class assignments. We were very concerned and questioned what we needed to do to help him do better. The education team was at a loss for recommendations because what was causing the failing grades was inconsistent. It changed from test to test. Since the Christmas break, he has been bringing home reading tests that were passing. Most recently, he has even brought home some A's and B's. Amazing! What has changed? Nothing on our end. We still read the stories with him. We still study the vocabulary words and definitions. We still help him complete the reading assignments and quiz him on the stories. We are doing nothing different.
Our son has developed a love for writing. He loves to write and act out stories and plays. He writes and performs songs. Because of this love, his aunt bought him a book of children's plays for Christmas. His grandfather made him a puppet stage and his grandmother bought him puppets. My husband and I bought him a series of puppets to add to his "actors". Our basement looks like a mad writers/actors domain. It is filled with "scenes" in the midst of action. Stuffed animals are arranged in unique vignettes waiting to be acted out. He can't get enough of being read to. His love of language and stories may account for his improvement in this area in school.
Because of his expressive language issues, it is still very painful for him to read his assignments to us. As a result, we take turns reading with him. We try to give him the shortest sections. On days when he is very jammed up with blocking and stuttering, we do almost all of the reading but spend extra time discussing the stories and questioning him on the content. I have also started looking into computer programs that help by reading the information with him/for him. He needs to expand his reading capability but with an expressive delay, it is an interesting challenge to balance these needs. We continue to explore the options available to him.
Math has been an area of strength for our son for a couple years now. Once he started "getting it", math just seemed to click for him. His ability to set up formulas and answer computation problems amazes me. He can solve puzzles and word finds and math based computer games in a way that I cannot. Timed math tests were the bane of our existence because timed anything for a child with expressive delays is a nightmare. Thankfully, this should be his last year in which he is required to complete these tests. Hopefully.
In the past, getting our son to clean up his room or the basement has been an exercise in futility and frustration. Recently, we have been able to get our son to side step his extreme agitation with the assigned task by breaking it down into small steps. For example, when faced with the need to clean up a mess, we can suggest a specific type of item to pick up first. "Go pick up all your legos first." By picking up one type of item at a time, he avoids becoming overwhelmed by the assigned task. Writing specific lists that allow him to cross off each item as he completes it, also seems to reduce his frustration.
Finally, and most importantly for those of us that live with him and love him, our son seems to be slowly developing the ability to pull back from a meltdown. In recent months, there have been several instances where he seemed to be ramping up for a meltdown but was able to successfully calm down and rationalize. He was able to work through the moment without losing complete control. His solution at one time for escaping a meltdown was to run away from us. He would physically run out the door and run around the yard, yelling and screaming. He would run upstairs and hide. He would run back to our bedroom and hide in the bathroom closet. Recently, when told to stop, don't run away, talk to us, he has had more and more moments when he could stop and work it out. For our family, this area of growth is probably the most significant. The meltdowns are the most draining and painful for us to live with. Growth in this area would have the most positive impact on our family.
Little changes can have a large effect on a family. When you watch a loved one struggle on a daily basis, it's very hard to sit by and do nothing. These signs of growth have breathed fresh air into our lives. We have lived with the frustration of this current plateau for far too long. I'm grateful for these signs. I pray they continue. Don't give up. Change could be right around the corner.
Saturday, January 16, 2016
Melt down vs. Temper Tantrum
I began writing this blog years ago as a form of therapy. I needed an outlet to voice my pain, fears, and frustration. Conversely, I felt a desire to express the great joy that comes with being the parent of such an extraordinary son as ours. As an educator, I also felt the need to educate others about children like our son. Children that seem to be stuck in the middle. They aren't "normal" but they also aren't severely "special". They are only mildly special. I wanted other parents experiencing a similar journey to know that they aren't alone. I also wanted those who sit in judgement of parents to recognize that often there are circumstances beyond their understanding. Compassion can go a very long way.
One area of parenting that seems to bring the most swift and negative judgements from others are melt down behaviors. After the morning that we experienced, I felt the need to "educate" others about the difference between a melt down and a temper tantrum. I assure you that there is a clear and definitive difference. According to the U.S. National Library of Medicine, "temper tantrums are unpleasant and disruptive behaviors or emotional outbursts. They often occur in response to unmet needs or desires. Tantrums are most likely to occur in younger children or others who cannot express their needs or control their emotions when they get frustrated." A melt down can be very different. They are not caused by a spoiled child not getting a toy or treat. It is not being told no you can't go to the zoo. Quite often, they appear to be triggered by completely innocent or even indecipherable causes. In other words, they appear to be brought on by actions that would not trigger a "normal" child to tantrum.
This morning our son woke himself up REVVED! He bound out of bed full of excitement, sound, and movement. Our oldest son reported that when he ran to the bathroom to brush his teeth, our youngest son brushed his teeth while running in place. He said his feet were moving faster than his toothbrush. As he launched himself into the day, he rushed for his Kindle and started to load a game. He brother intervened and cautioned him that he should plug his Kindle into its charger because it only had forty-five percent battery life and he would want it for the fire hall breakfast. Those words were the trigger. Not "you can't have it". Not "put that down and stop playing now". A simple reminder that it needed charged so he would have it to use for the day.
Those simple words issued for his benefit, launched our youngest so into a melt down. He started screaming and running and panicking. When I attempted to intervene, slow him down, and explain what his brother was trying to say, he began to manically fight back, pushing and screaming. His eyes were glazed over. He was repetitively saying the same phrases over and over. I asked him to cuddle with me for a few minutes. "Let's just lay down here and calm our breathing. Relax." He lay down for less than a minute, body tight, breathing escalated before he started repeating the same phrases over and over again. He couldn't pull himself out of it. He was experiencing a melt down.
Please keep in mind that this was 6 am. Six in the morning. Our day started with a complete melt down at 6 am as we prepared to go to the fire hall to volunteer for a breakfast fundraiser. At the peak of our son's meltdown, my husband quickly finished his shower, dressed, and stepped into the moment. His intervention at that moment snapped our son out of his "state" and he was able to slowly regain control.
We have often experienced that if a melt down cannot be prevented, one parent must ride the storm to the peak. If we time it correctly, the other parent can step in, state the same words or explanation that the other parent had been attempting to convey, but the intervention of a different person at just the right moment "snaps him out of it". The problem occurs when we are home alone and he goes into such a state. Unfortunately, the only solution on those occasions has been to ride out the storm until our son exhausts himself.
As my husband patiently explained the same information to our son that his older brother and I had attempted to convey to him, I silently started sobbing. It's a horrible experience. To know that your son is so out of control. To know that you are helpless to get through to him. The fear that these moments will never stop, that he will continue to get bigger and stronger and harder to manage, hurts so deep inside that you wonder if that ache will ever heal.
But it does. And life goes on. Socks and shoes get put on. Pills get taken. Coats get put on and you continue with your day. For the child, it's over. His day is still "glitchy". Things don't seem to connect or click on these days. You can see the neurological causation at work in other areas more profoundly on these days. Speech is more bumpy. Movement is less coordinated. Thinking is less focused. Impulsiveness is more prevalent. For you, these experiences are never truly over because that ache is still there. You don't know when, where, or even why the next melt down is coming.
Positives? Can there be a positive with such an experience? Today as our son ranted and raced and raved, he stated multiple times "I haven't done this for awhile. I haven't done this in a long time." There is the positive. For the first time ever, there was a verbal recognition on his part that this behavior is not okay. It is not acceptable. It must end and not be repeated. It also tells us that he has been trying to NOT melt down. He wants to do better... And he has been. He is correct. We have not had a melt down in awhile. I pray it is the last. That is always my prayer.
One area of parenting that seems to bring the most swift and negative judgements from others are melt down behaviors. After the morning that we experienced, I felt the need to "educate" others about the difference between a melt down and a temper tantrum. I assure you that there is a clear and definitive difference. According to the U.S. National Library of Medicine, "temper tantrums are unpleasant and disruptive behaviors or emotional outbursts. They often occur in response to unmet needs or desires. Tantrums are most likely to occur in younger children or others who cannot express their needs or control their emotions when they get frustrated." A melt down can be very different. They are not caused by a spoiled child not getting a toy or treat. It is not being told no you can't go to the zoo. Quite often, they appear to be triggered by completely innocent or even indecipherable causes. In other words, they appear to be brought on by actions that would not trigger a "normal" child to tantrum.
This morning our son woke himself up REVVED! He bound out of bed full of excitement, sound, and movement. Our oldest son reported that when he ran to the bathroom to brush his teeth, our youngest son brushed his teeth while running in place. He said his feet were moving faster than his toothbrush. As he launched himself into the day, he rushed for his Kindle and started to load a game. He brother intervened and cautioned him that he should plug his Kindle into its charger because it only had forty-five percent battery life and he would want it for the fire hall breakfast. Those words were the trigger. Not "you can't have it". Not "put that down and stop playing now". A simple reminder that it needed charged so he would have it to use for the day.
Those simple words issued for his benefit, launched our youngest so into a melt down. He started screaming and running and panicking. When I attempted to intervene, slow him down, and explain what his brother was trying to say, he began to manically fight back, pushing and screaming. His eyes were glazed over. He was repetitively saying the same phrases over and over. I asked him to cuddle with me for a few minutes. "Let's just lay down here and calm our breathing. Relax." He lay down for less than a minute, body tight, breathing escalated before he started repeating the same phrases over and over again. He couldn't pull himself out of it. He was experiencing a melt down.
Please keep in mind that this was 6 am. Six in the morning. Our day started with a complete melt down at 6 am as we prepared to go to the fire hall to volunteer for a breakfast fundraiser. At the peak of our son's meltdown, my husband quickly finished his shower, dressed, and stepped into the moment. His intervention at that moment snapped our son out of his "state" and he was able to slowly regain control.
We have often experienced that if a melt down cannot be prevented, one parent must ride the storm to the peak. If we time it correctly, the other parent can step in, state the same words or explanation that the other parent had been attempting to convey, but the intervention of a different person at just the right moment "snaps him out of it". The problem occurs when we are home alone and he goes into such a state. Unfortunately, the only solution on those occasions has been to ride out the storm until our son exhausts himself.
As my husband patiently explained the same information to our son that his older brother and I had attempted to convey to him, I silently started sobbing. It's a horrible experience. To know that your son is so out of control. To know that you are helpless to get through to him. The fear that these moments will never stop, that he will continue to get bigger and stronger and harder to manage, hurts so deep inside that you wonder if that ache will ever heal.
But it does. And life goes on. Socks and shoes get put on. Pills get taken. Coats get put on and you continue with your day. For the child, it's over. His day is still "glitchy". Things don't seem to connect or click on these days. You can see the neurological causation at work in other areas more profoundly on these days. Speech is more bumpy. Movement is less coordinated. Thinking is less focused. Impulsiveness is more prevalent. For you, these experiences are never truly over because that ache is still there. You don't know when, where, or even why the next melt down is coming.
Positives? Can there be a positive with such an experience? Today as our son ranted and raced and raved, he stated multiple times "I haven't done this for awhile. I haven't done this in a long time." There is the positive. For the first time ever, there was a verbal recognition on his part that this behavior is not okay. It is not acceptable. It must end and not be repeated. It also tells us that he has been trying to NOT melt down. He wants to do better... And he has been. He is correct. We have not had a melt down in awhile. I pray it is the last. That is always my prayer.
Saturday, January 9, 2016
A Glimpse into the Future
Sometimes life offers you a glimpse of what your life could be. We had one of those moments today. As a treat, my husband and I decided to take our youngest son out for lunch while we were doing some running. It was at the restaurant that we had a chance to see what life could look like for our youngest son if we don't continue to work to change that trajectory.
At the local pizza shop, a tall man approached us and started speaking loudly to my husband in a familiar manner. I tuned out the conversation as I attempted to keep our son from spinning off and touching things before we ordered and got him corralled at a table. When the worker stepped up to the counter and took our order, the other man continued to stand closely to my husband and loudly share a story with him about a time they had eaten lunch together. I continued to ignore the conversation since our youngest had started trying to tell the worker what he wanted to eat and I wanted to ensure that the young man understood him. As soon as he had completed his order, my son started to rush toward the drink machine to attempt to dispense his own soda. I was attempting to intervene and slow him down when I realized my husband was still trying to pay the bill as the tall man continued to loudly talk to him while standing too close for socially accepted behavior. It was at that point that I tuned in and realized this was a grown man in his early thirties with obvious mental health and/or developmental issues. It was also obvious that he was well known to the employees and most of the patrons.
We allowed our son to fill his drink as he loudly protested that he could do it. As I put the lid on the drink and cautioned him to move slowly, our son again loudly proclaimed that he could do it. At the same time, the tall man continued to loudly, and closely, continue to share his story with the same repetitive phrase popping up in the conversation. He laughed loudly. He talked loudly. It was very clear that he lacked an awareness of social norms and expectations.
His behavior made me very uncomfortable. Not for the obvious reasons. Having worked in corrections for eighteen years, I had worked with more than my fair share of people with serious mental health issues. What made me uncomfortable was the clear commonalities between this tall man and my tall son. When I looked at this man, I could see a snapshot of what life could be like for my son in the future. There were many parallels that gave me great unease.
I listened to the other patrons talk and interact with him in the other room. One seemed to be egging him on to be loud and boisterous. Some seemed to just want him to go away and leave them alone. He clearly made them uncomfortable. Most of the patrons and employees seemed familiar and comfortable with him. They appeared to know how to help him keep himself under control. At one point, the one employee said "Inside voice" in a firm yet kind voice. The tall man repeated "Inside voice" then added "or get the hell out". This was a conversation that must has occurred on more than one occasion at this establishment. When the employee delivered our food, he started to apologize for the tall man and his behavior. My husband reassured the young man that it was no problem, he knew the tall man and we understand he didn't know any better and he meant no harm.
The rest of the meal proceeded without incident and the pizza was DELICIOUS. As we prepared to leave, my husband stopped to talk to the employees and another man that he knew. Our son looked at the tall man sitting at a booth in the corner and declared "You're really loud!" The tall man dropped his head and shook it with chagrin muttering "inside voice". The moment struck me. That could be my son in the future. Loud. Unaware of physical boundaries. Unaware of social norms and expectations. Tall and imposing until you realize that he meant no harm. Egged on and over excitable with the wrong people. This could be his future.
But it won't be. This snapshot will not be my son. My husband and I work too hard and too diligently. We recognize his behavioral tendencies but we don't accept them as how he has to be. We have made progress. We will continue to make progress. This will not be his future. We will see to it. God has a plan for our son. We will prepare him for it.
At the local pizza shop, a tall man approached us and started speaking loudly to my husband in a familiar manner. I tuned out the conversation as I attempted to keep our son from spinning off and touching things before we ordered and got him corralled at a table. When the worker stepped up to the counter and took our order, the other man continued to stand closely to my husband and loudly share a story with him about a time they had eaten lunch together. I continued to ignore the conversation since our youngest had started trying to tell the worker what he wanted to eat and I wanted to ensure that the young man understood him. As soon as he had completed his order, my son started to rush toward the drink machine to attempt to dispense his own soda. I was attempting to intervene and slow him down when I realized my husband was still trying to pay the bill as the tall man continued to loudly talk to him while standing too close for socially accepted behavior. It was at that point that I tuned in and realized this was a grown man in his early thirties with obvious mental health and/or developmental issues. It was also obvious that he was well known to the employees and most of the patrons.
We allowed our son to fill his drink as he loudly protested that he could do it. As I put the lid on the drink and cautioned him to move slowly, our son again loudly proclaimed that he could do it. At the same time, the tall man continued to loudly, and closely, continue to share his story with the same repetitive phrase popping up in the conversation. He laughed loudly. He talked loudly. It was very clear that he lacked an awareness of social norms and expectations.
His behavior made me very uncomfortable. Not for the obvious reasons. Having worked in corrections for eighteen years, I had worked with more than my fair share of people with serious mental health issues. What made me uncomfortable was the clear commonalities between this tall man and my tall son. When I looked at this man, I could see a snapshot of what life could be like for my son in the future. There were many parallels that gave me great unease.
I listened to the other patrons talk and interact with him in the other room. One seemed to be egging him on to be loud and boisterous. Some seemed to just want him to go away and leave them alone. He clearly made them uncomfortable. Most of the patrons and employees seemed familiar and comfortable with him. They appeared to know how to help him keep himself under control. At one point, the one employee said "Inside voice" in a firm yet kind voice. The tall man repeated "Inside voice" then added "or get the hell out". This was a conversation that must has occurred on more than one occasion at this establishment. When the employee delivered our food, he started to apologize for the tall man and his behavior. My husband reassured the young man that it was no problem, he knew the tall man and we understand he didn't know any better and he meant no harm.
The rest of the meal proceeded without incident and the pizza was DELICIOUS. As we prepared to leave, my husband stopped to talk to the employees and another man that he knew. Our son looked at the tall man sitting at a booth in the corner and declared "You're really loud!" The tall man dropped his head and shook it with chagrin muttering "inside voice". The moment struck me. That could be my son in the future. Loud. Unaware of physical boundaries. Unaware of social norms and expectations. Tall and imposing until you realize that he meant no harm. Egged on and over excitable with the wrong people. This could be his future.
But it won't be. This snapshot will not be my son. My husband and I work too hard and too diligently. We recognize his behavioral tendencies but we don't accept them as how he has to be. We have made progress. We will continue to make progress. This will not be his future. We will see to it. God has a plan for our son. We will prepare him for it.
Friday, January 1, 2016
Reflecting on Progress
When you are raising children, there is no pause button. There is very little time to stop to catch your breath. Needs must be met and life must go on. Reflection is often a luxury.
As I have discussed in the past, our youngest son has been deeply entrenched in one of his regression periods of his unique developmental cycle. It is probably the longest regression that we have experienced. Because my husband and I are both problem solvers by nature, we strapped on our big people pants and did what needed to be done. As discussed previously, we met with the neurological team to touch base and bring them up to speed. Additionally, we enrolled him in out-patient occupational therapy (OT) bi-weekly and speech therapy weekly. As usual, we stayed in close contact with his support team at school. We questioned, nagged, and supported as needed.
After the fall parent/teacher conference, my husband and I looked at each other and pretty much threw up our hands and said "Okay. What will be, will be." Everyone involved in his care, including ourselves, couldn't account for the longevity of this regression. We were all frustrated. He was impulsive, getting out of his seat; wandering around the classroom; forgetting his books, homework, and personal belongings. He only passed reading by one point. He had earned a C in science but miraculously an A in math. His teacher, a long time veteran of the classroom, looked at us and said "I love his smile. I love his personality. He's so very sweet. I simply do not know what to do with him or for him." Wow! Where do you go from there? We offered suggestions and feedback but knew in actuality that none of us knew what to do with him and for him at this time. In the past, we have been a resource for his teaching team when they encountered roadblocks with his progress. We were at the point where we had nothing new to offer.
As we left the conference that night, we felt helpless. We went out to dinner for some quiet time as a couple and discussed where we were with our son. Over dinner, we came to the consensus that we were giving him everything that we had to give. He had our time, our energy, our focus, and our resources. We had him in the care of one of the best neurologists his hospital had to offer. They had touched base with outside resources to ask for suggestions and insight. No one had anything new to offer. Everyone on his team at the hospital, at home, and at school truly loved him and wanted the best for him. Everyone was giving him 100% of what they had to offer. It seemed to have very little impact. We were all quite frustrated. Over dinner, my husband and I decided that we would consider this year a draw. If we could hold him to his current level of progress without further regression or loss of skills, we would feel successful. We would be satisfied with our efforts. When I went to bed that night, I earnestly prayed "God, your will be done. I can't do more than I am. I have nothing else to offer. I'm not big enough for this. I need your intervention." Through the days that followed, that prayer became the mantra in the back of my mind.
Then, when we least expected it, we started to notice change. Progress. Slow at first. Painfully slow. But progress.
He started bringing home his personal belongings. That is HUGE! He started using his reminder checklist at school that I had created for him. As a result, he started remembering his homework agenda, papers, and books. That was SUPER HUGE! At home, he started writing. Feverishly some days. He created his own book full of fables. He was writing plays and stories that he would act out with his stuffed animals. Soon he was coming up with witty comments and jokes. Language seemed to be very interesting to him and was becoming a part of his play and everyday activities. Right before Christmas break, we had our first clear sign that things were taking an upward swing. In one week, he brought home an A+ on a math test, an A on a science test, and two Cs on reading tests. These were significant improvements.
His speech has not changed. Some days there is no stuttering, blocking, or hesitation. None. He has smooth speech. Other days, he can't get out a single sentence or phrase without blocking and stuttering. He has also started developing some secondary behaviors. Secondary behaviors are behaviors that develop as an instinctive attempt to cope with stuttering and blocking. He has started grimacing as he attempts to talk. One a very bad day, he will stomp his foot or kick his leg like he's trying to physically jump the words out of his body. The most painful secondary behavior to watch is when he uses his hands around his mouth. Some days it looks like he is physically trying to pull the words or funnel the words out of his mouth. This area of development has not improved but that is no surprise. Speech has consistently been his biggest area of delay. Improvement in this area would be Earth shattering. (Still, a girl can hope.)
As we return to school and work in a few days after the long holiday break, I am going to embrace my new mantra. God this is too big for me. I am not strong enough. Your will be done. In your time Lord. I will continue to do all I can for him and his support teams but I also recognize that his needs are greater than me and my abilities. I will embrace the embers of hope that we have been given. Hopefully, they can be fanned into a flame that lights the way to greater progress.
Thursday, November 26, 2015
Giving Thanks
I've learned to try to embrace life, the good and the bad. We never know how much time we are going to have here on Earth or how long we will have to enjoy our loved ones. Some days it's easy to find the beauty. Some days you have to look a little deeper.
For the last week or so, our youngest son seems to be barreling through life in a manic whirlwind. Full throttle. Happy. Angry. Frustrated. Full intensity. As a result, I can admit that I was looking forward to going to work with my oldest son while our youngest spent the day at home with his father. It was a fun day for my oldest son to volunteer in my classroom with the little ones. It gave him a chance to see me at work in an environment where I am usually happy and relaxed without the added edge I sometimes develop while at home.
My husband took our youngest son to speech therapy at the hospital as scheduled. When our oldest son and I finished at school, we met them at the hospital so we could all go out for supper together. The change in schedule and the opportunity to introduce his speech therapist to his brother sent our youngest son bouncing off the walls with excitement. He literally bound from person to person handing out kisses and hugs and talking a mile a minute. You could literally feel the energy pulsing off of him.
We had decided in advance that we would take them to our son's favorite Chinese restaurant. The prospect of eating there increased his excitement exponentially. He strutted through the doors on his tip toes, chest puffed out and declared "Hallelujah! Praise the Lord!" It took physical touch and constant verbal prompts to keep him from running into other patrons or spilling food and drink. His excitement was a tangible thing. I noticed several tables of other diners watching us curiously. Fortunately, we were able to keep him fairly contained until we were preparing to leave. His brother merely tossed his fortune from the fortune cookie onto a dirty plate covered in gooey sauce. This sent our youngest into a tailspin. He kept trying to grab the fortune that was now a yucky, sticky mess. We had to physically sweep him out of the booth and usher him towards the door. He exclaimed "I need it. I need it to remember this night!" The other men zoomed him out the door while I paid the bill as curious patrons gawked at the scene.
Thanksgiving morning dawned with the clanging of a large plastic carrot against a metal bowl. This was our son's wake up call to the family. Thanksgiving had begun. It was one of those days where his energy was hard to contain. We had a fight over socks and shoes. (Yes, you must put them on to go out in 30 degree weather.) We had a fight over cleaning up the toys, rakes, shovels, and wagon he had left littered over the yard yesterday. We had a fight over brushing his teeth. (Sorry man, they must be brushed daily.) We had a fight over refusing to take his meds. (Are you kidding me?!?) We had a fight over the ability to watch the Macy's Day parade AFTER he cleaned up his stuff outside. We had a fight when he couldn't locate his Charlie Brown's Thanksgiving Day DVD. Apparently, it was my fault that it couldn't be found. We had tears over soda vs milk. We had tears over the fact that we had RUINED Thanksgiving.
It was one of those days.
Once his extended family started arriving for lunch, he seemed to better harness his excitement that was coming out sideways all over the rest of us. He had other people to talk to, share with, and entertain. When his great-aunt agreed to play a board game with him, it gave him something to focus on and seemed to further de-escalate his excitability.
Through it all, truthfully, I wanted to scream. I could feel his energy crawling into me and threatening to take me over. I had to work to keep my cool and I'm not sure I was very successful. My frustration was very evident. I'm not proud of that.
On Thanksgiving evening, I am thankful for the joy in those crazy, chaotic moments. His pride in sharing his family with his therapist. The shared laughter of our family over dinner. Curling up on the couch with him after we came home from the restaurant. Reading him a bedtime story. Cracking silly jokes over his wake up call. Laughing at his game time conversations with his great-aunt. Sharing stories. I am thankful for the love that we share that helps us to move through the frustration and the challenges. I continue to pray daily for strength, patience, and fortitude. Maybe I need a vacation too.
For the last week or so, our youngest son seems to be barreling through life in a manic whirlwind. Full throttle. Happy. Angry. Frustrated. Full intensity. As a result, I can admit that I was looking forward to going to work with my oldest son while our youngest spent the day at home with his father. It was a fun day for my oldest son to volunteer in my classroom with the little ones. It gave him a chance to see me at work in an environment where I am usually happy and relaxed without the added edge I sometimes develop while at home.
My husband took our youngest son to speech therapy at the hospital as scheduled. When our oldest son and I finished at school, we met them at the hospital so we could all go out for supper together. The change in schedule and the opportunity to introduce his speech therapist to his brother sent our youngest son bouncing off the walls with excitement. He literally bound from person to person handing out kisses and hugs and talking a mile a minute. You could literally feel the energy pulsing off of him.
We had decided in advance that we would take them to our son's favorite Chinese restaurant. The prospect of eating there increased his excitement exponentially. He strutted through the doors on his tip toes, chest puffed out and declared "Hallelujah! Praise the Lord!" It took physical touch and constant verbal prompts to keep him from running into other patrons or spilling food and drink. His excitement was a tangible thing. I noticed several tables of other diners watching us curiously. Fortunately, we were able to keep him fairly contained until we were preparing to leave. His brother merely tossed his fortune from the fortune cookie onto a dirty plate covered in gooey sauce. This sent our youngest into a tailspin. He kept trying to grab the fortune that was now a yucky, sticky mess. We had to physically sweep him out of the booth and usher him towards the door. He exclaimed "I need it. I need it to remember this night!" The other men zoomed him out the door while I paid the bill as curious patrons gawked at the scene.
Thanksgiving morning dawned with the clanging of a large plastic carrot against a metal bowl. This was our son's wake up call to the family. Thanksgiving had begun. It was one of those days where his energy was hard to contain. We had a fight over socks and shoes. (Yes, you must put them on to go out in 30 degree weather.) We had a fight over cleaning up the toys, rakes, shovels, and wagon he had left littered over the yard yesterday. We had a fight over brushing his teeth. (Sorry man, they must be brushed daily.) We had a fight over refusing to take his meds. (Are you kidding me?!?) We had a fight over the ability to watch the Macy's Day parade AFTER he cleaned up his stuff outside. We had a fight when he couldn't locate his Charlie Brown's Thanksgiving Day DVD. Apparently, it was my fault that it couldn't be found. We had tears over soda vs milk. We had tears over the fact that we had RUINED Thanksgiving.
It was one of those days.
Once his extended family started arriving for lunch, he seemed to better harness his excitement that was coming out sideways all over the rest of us. He had other people to talk to, share with, and entertain. When his great-aunt agreed to play a board game with him, it gave him something to focus on and seemed to further de-escalate his excitability.
Through it all, truthfully, I wanted to scream. I could feel his energy crawling into me and threatening to take me over. I had to work to keep my cool and I'm not sure I was very successful. My frustration was very evident. I'm not proud of that.
On Thanksgiving evening, I am thankful for the joy in those crazy, chaotic moments. His pride in sharing his family with his therapist. The shared laughter of our family over dinner. Curling up on the couch with him after we came home from the restaurant. Reading him a bedtime story. Cracking silly jokes over his wake up call. Laughing at his game time conversations with his great-aunt. Sharing stories. I am thankful for the love that we share that helps us to move through the frustration and the challenges. I continue to pray daily for strength, patience, and fortitude. Maybe I need a vacation too.
Subscribe to:
Posts (Atom)