Tonight is more of a status update than anything else. Our son had his bi-yearly neurology appointment yesterday. These appointments are meant to review his medical conditions; track his developmental progress; gauge the current effectiveness of his medicines, treatments, and therapies; and discuss any issues that have developed or worsened over the last six months. If you've been reading recent blogs, you know that we had some issues to discuss.
Our son's specialist is an award winning pediatric neurologist who is doing some cutting edge research in genetics and its impact on kids with developmental issues and autism spectrum disorders. He's been in our son's life since he was two years old. We are all very comfortable with him and his opinions. Even better, he's a really great guy who loves his kids and sees them as individuals, not a disorder to be treated.
As he typically does before coming in to meet with us, the doctor reviewed our son's file and any documents that we had brought along for his benefit. These generally include feedback from his teaching team, the most recent Individualized Education Plan (IEP), recent therapy case notes, recent testing assessments, and a couple parent surveys he has us complete prior to the appointment. With that information fresh in his mind, he comes in and generally gets a feel for how we are feeling about our son's progress. From there, he does a neurological exam, a physical exam, and generally just interacts with our son to see for himself how he is progressing. We never feel rushed by him or like we are taking up too much time. After the exam, we generally ask questions and he reviews the options for changes that we may or may not want to make for our son's treatment.
I hope you're getting a sense of how thorough and invested this man is in what he does. It's important that you understand that before I continue with the story...
From the very beginning, our son has been a puzzle that no one can solve. No one can tell us why he is the way his is. They know it is neurologically based but he doesn't fit any syndrome or disorder or "spectrum". A misdiagnosis (with a different neurologist) sent us off on a wild goose chase to the Children's Hospital of Philadelphia with the warning that they were going to need to split our son's skull and insert spacers to allow it to grow properly. I was never so happy in my life to receive a misdiagnosis! Fortunately, that surgery was not required. At times, it feels as if we have been to every department and met every specialist at Geisinger Medical Center as we've searched for answers.
Somewhere along the way, we've learned to trust our instincts and began to openly advocate for what we wanted for our son. It has made a world of difference in his treatment and in his development. At our most recent specialist appointment, we again brought up our son's strange developmental cycle that always seems to involve a simultaneous regression in his speech; an increase in his drooling and clumsiness; and an amazing increase in developmental skills or abilities. Those within our circle of friends and family can attest to the fact that this pattern has been a consistent part of his development from early on. When we again brought this up to his doctor and mentioned the current severity of his blocking and stuttering, paired with the amazing burst of development, his answer surprised us. But only a little.
When an award winning doctor looks you in the eye and says "I don't know why this happens. I'm not experienced with this.", it's a little shocking. Apparently in his experience, a regression in development tends to be universal. He feels it is quite unusual for a child to experience a significant regression and also experience significant bursts of development in other areas. He can't explain why this is happening because he hasn't experienced this before. Several specialists in this field meet regularly to eat, chat, and discuss unique or unusual cases and get feedback from their peers. Our doctor promised to bring up our son's situation at the next luncheon.
Several things became very clear to me at this appointment. (1) If a respected specialist in his field can't explain why our son is the way his is, why should I allow myself to become frustrated and sad when I don't have the answers. (2) Our son is a unique and amazing individual made in love, with love, and for love. As his doctor stated, "He's just the nicest kid. I bet everyone just loves him." Yes. They really do doc. (3) We need to give ourselves credit for what we have accomplished with our son. We've asked questions, researched, advocated, and challenged. He continues to make progress though the challenge of drooling and stuttering and the inability to speak. He perseveres and feels good about himself and who he is as a person. That's a lot to celebrate. Finally, we don't have the answers but I see God in every step of this journey. He has been there from the beginning. Why do we experience bursts of development through the deepest of regressions? Because God knows I need the light. He knows I need to see a sign that things will get better, will improve, will change. It's His gift to me. It's a gift to us all. Our son is a gift. If you've met him, you know what I mean.
Friday, January 23, 2015
Monday, January 5, 2015
New Year Resolutions
I'm not really one for making resolutions for the new year. If I see a problem, I attempt to resolve it. By nature, I'm a "fixer". I don't like chaos or disorder or uncertainty. Knowing my tendency to attempt to control chaotic events in my life, I sometimes think God looks down and says, "Oh daughter, when will you learn to give it to me completely. I've got this." Because I refuse to learn the lesson, it keeps being taught. Like a petulant child, I want to stomp my foot and scream "But I hate this lesson!"
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
Friday, November 7, 2014
Why?
From the very beginning, the purpose of this blog was to communicate and interact with other parents who may have experienced similar journeys with their children and to open a dialogue with those who have not. In order to do this effectively, I have tried to be as brutally honest and open about our life and our experiences as I could be. I've tried to balance our privacy and my child's dignity with the need to help others who are struggling with experiences we have already survived. It has been a cathartic experience to share the joy, fear, frustration, and hurt of this journey. Having a child that is "only mildly special", who tests at the bottom level of average or the top level of below average, always slightly different from those around him, yet normal enough, is a blessing and a curse. We are grateful for his "mildness" but there is also frustration that comes with this "mildness". Fighting for services. Fighting to get people to see how bright and talented he really is. Fighting people to not count him out and sign him off as not quite normal, but close enough. Fighting to make others want to help him meet his true potential. There is also that ever present question. Why? Why him? Why us? WHY?!?!
That question has probably been my greatest personal struggle through our journey. Why does this beautiful, smiling, bubbly kid have to work so hard for EVERYTHING? Why does he have to live trapped in a body that won't let him show everyone who he really is? Why do I have to stand by and watch him be hurt by other kids who don't understand why he is the way he is? They don't understand why he gets food all over himself when he eats; why he falls and hurts himself on the playground all the time; why he stutters and drools and can't get the words out; or why he stands too close and stares? Why does he have to take his anger and frustration out on us when he melts down? Why can't I learn not to take it personally? I know it's not about me. Why do I let it hurt so much?
For a long time, I didn't have the answers. I couldn't begin to understand why God would let this happen to us. Our family was so normal. We were doing everything "the right way". It just seemed so unfair. I was hurt and angry. At God. At my husband. At myself. And as hard as it is to admit, at my son. It's a shameful thing to have to admit that but I promised myself I would always be honest with our experiences and our journey.
Over the years, people would tell me things like "God will never give you more than you can handle." Yeah, right. "If God leads you to it, he'll lead you through it." I wish he would lead me a little faster. "All things will be answered in God's time." or "God has a plan." On an intellectual level, I heard and understood what they were saying. On an emotional level, I just couldn't buy into it. I have believed in God my whole life. My faith is a solid part of who I am. I'm not a Christian because my parents raised me in the church, although that probably didn't hurt. I'm a Christian because my faith in God has gotten me through some extremely challenging times in my life. Some of my earliest memories involve me praying and asking God to help me, to protect me, to see me through. He always has. Always. This was the first time in my life that I couldn't see Him clearly. One challenge has seemed to lead to another, to another, and to another. There have been definite blessings along the way. I have no doubt of that. I just couldn't wrap my head around the "WHY?" of it all.
Recently, God has started to open my eyes. He has started to answer some of the "whys". I teach court committed female juvenile offenders. I've been doing this job since 1998. They have always been "my girls". I truly love them all (even when I want to kick them in the pants). Last year, I was almost at my breaking point. It was the closest I have ever been to throwing in the towel and saying "It's too much. I can't do this anymore." Our population was probably the most aggressive I have ever worked with at this level of corrections. They were angry and irrational and physically aggressive to an extreme level. I felt as if I were babysitting instead of teaching. I questioned if anyone was learning anything at all. Unknown to me, God was laying a foundation. He was putting a plan in place. Relationships were being built. I was being prepared.
When we started this new school year and they reviewed the roster with us, I wanted to walk out the door and not turn back. Our usual population is typically made up of girls who are significantly behind in their credits; tremendously behind in their math and reading levels; and carrying a boat load of personal issues mostly due to abuse and neglect. This year, we were also going to have a girl with mental retardation and a seizure disorder (who was not a native English language learner). In addition, we were going to have two autistic girls, one of which we had had previously and was known to be aggressive. There was also a large number of older girls and girls with psychiatric issues. Besides teaching, as the lead teacher, it is my responsibility to track their credits; contact their home guidance counselors; and convince everyone that they could/should earn a high school diploma. The larger our population of older girls, the more my workload increases. All I could think was how am I going to manage this and my son. I was feeling very overwhelmed.
God has a way of providing the answers even when we think they aren't there to be found. What I didn't know is that my girl with mental retardation would be the sweetest little miss on the planet. I get to start every work day with a hug. I get to end every workday with a hug and an "I love you Miss." She has the EXACT same stuttering/disfluency pattern as my son. Without my son and his stuttering and speech therapy sessions, I wouldn't have known what to do and what NOT to do to help her work through those challenging blocks. What I didn't know is that my big angry autistic girl flies into rages because she is overwhelmed and frustrated and doesn't know how to get it out. If I hadn't had my son, I wouldn't know to watch for the signs that she is getting overstimulated or that her frustration level is building. I wouldn't know the tricks to help her calm herself down before she reaches an explosion. What I didn't know is that my other autistic girl wants relationships but is socially inept and doesn't know how to make those connections. She doesn't know how to read other people's body language. She doesn't understand that her behavior is having a negative effect on someone else. Without my son in my life, I wouldn't recognize her struggles or know what to say and do to help coach her through those times.
What I didn't know, is that God was going to prepare me to be a better teacher by forcing me to be a better mom. Because of my son, it is in the back of my head, every single day, that that is someone's child. This was a child that someone gave birth to, had hopes for, had dreams for. Somewhere in their journey, something went wrong. But by their journey taking a wrong turn, God brought them to me. What I didn't know is that He has been preparing me. In the times when I have felt alone and scared, he was preparing me. When I thought I couldn't take another day, he was preparing me. I'm not alone. He's preparing me still.
If I'm honest, I wouldn't have chosen this path. I wanted a boring life. A stable uncomplicated life. I wanted to teach elementary school, get married, and have two kids. God had a different plan in mind. Instead, I fell in love with teaching juvenile offenders. I got married and had those two children but it hasn't been boring. Or uncomplicated. That's okay. I'm starting to see that there's a plan, even if I don't necessarily like the plan. I need to have faith and trust that He will bring me through it. I still hate the clichés but I'm beginning to see that they are true. (I hate it when that happens.)
That question has probably been my greatest personal struggle through our journey. Why does this beautiful, smiling, bubbly kid have to work so hard for EVERYTHING? Why does he have to live trapped in a body that won't let him show everyone who he really is? Why do I have to stand by and watch him be hurt by other kids who don't understand why he is the way he is? They don't understand why he gets food all over himself when he eats; why he falls and hurts himself on the playground all the time; why he stutters and drools and can't get the words out; or why he stands too close and stares? Why does he have to take his anger and frustration out on us when he melts down? Why can't I learn not to take it personally? I know it's not about me. Why do I let it hurt so much?
For a long time, I didn't have the answers. I couldn't begin to understand why God would let this happen to us. Our family was so normal. We were doing everything "the right way". It just seemed so unfair. I was hurt and angry. At God. At my husband. At myself. And as hard as it is to admit, at my son. It's a shameful thing to have to admit that but I promised myself I would always be honest with our experiences and our journey.
Over the years, people would tell me things like "God will never give you more than you can handle." Yeah, right. "If God leads you to it, he'll lead you through it." I wish he would lead me a little faster. "All things will be answered in God's time." or "God has a plan." On an intellectual level, I heard and understood what they were saying. On an emotional level, I just couldn't buy into it. I have believed in God my whole life. My faith is a solid part of who I am. I'm not a Christian because my parents raised me in the church, although that probably didn't hurt. I'm a Christian because my faith in God has gotten me through some extremely challenging times in my life. Some of my earliest memories involve me praying and asking God to help me, to protect me, to see me through. He always has. Always. This was the first time in my life that I couldn't see Him clearly. One challenge has seemed to lead to another, to another, and to another. There have been definite blessings along the way. I have no doubt of that. I just couldn't wrap my head around the "WHY?" of it all.
Recently, God has started to open my eyes. He has started to answer some of the "whys". I teach court committed female juvenile offenders. I've been doing this job since 1998. They have always been "my girls". I truly love them all (even when I want to kick them in the pants). Last year, I was almost at my breaking point. It was the closest I have ever been to throwing in the towel and saying "It's too much. I can't do this anymore." Our population was probably the most aggressive I have ever worked with at this level of corrections. They were angry and irrational and physically aggressive to an extreme level. I felt as if I were babysitting instead of teaching. I questioned if anyone was learning anything at all. Unknown to me, God was laying a foundation. He was putting a plan in place. Relationships were being built. I was being prepared.
When we started this new school year and they reviewed the roster with us, I wanted to walk out the door and not turn back. Our usual population is typically made up of girls who are significantly behind in their credits; tremendously behind in their math and reading levels; and carrying a boat load of personal issues mostly due to abuse and neglect. This year, we were also going to have a girl with mental retardation and a seizure disorder (who was not a native English language learner). In addition, we were going to have two autistic girls, one of which we had had previously and was known to be aggressive. There was also a large number of older girls and girls with psychiatric issues. Besides teaching, as the lead teacher, it is my responsibility to track their credits; contact their home guidance counselors; and convince everyone that they could/should earn a high school diploma. The larger our population of older girls, the more my workload increases. All I could think was how am I going to manage this and my son. I was feeling very overwhelmed.
God has a way of providing the answers even when we think they aren't there to be found. What I didn't know is that my girl with mental retardation would be the sweetest little miss on the planet. I get to start every work day with a hug. I get to end every workday with a hug and an "I love you Miss." She has the EXACT same stuttering/disfluency pattern as my son. Without my son and his stuttering and speech therapy sessions, I wouldn't have known what to do and what NOT to do to help her work through those challenging blocks. What I didn't know is that my big angry autistic girl flies into rages because she is overwhelmed and frustrated and doesn't know how to get it out. If I hadn't had my son, I wouldn't know to watch for the signs that she is getting overstimulated or that her frustration level is building. I wouldn't know the tricks to help her calm herself down before she reaches an explosion. What I didn't know is that my other autistic girl wants relationships but is socially inept and doesn't know how to make those connections. She doesn't know how to read other people's body language. She doesn't understand that her behavior is having a negative effect on someone else. Without my son in my life, I wouldn't recognize her struggles or know what to say and do to help coach her through those times.
What I didn't know, is that God was going to prepare me to be a better teacher by forcing me to be a better mom. Because of my son, it is in the back of my head, every single day, that that is someone's child. This was a child that someone gave birth to, had hopes for, had dreams for. Somewhere in their journey, something went wrong. But by their journey taking a wrong turn, God brought them to me. What I didn't know is that He has been preparing me. In the times when I have felt alone and scared, he was preparing me. When I thought I couldn't take another day, he was preparing me. I'm not alone. He's preparing me still.
If I'm honest, I wouldn't have chosen this path. I wanted a boring life. A stable uncomplicated life. I wanted to teach elementary school, get married, and have two kids. God had a different plan in mind. Instead, I fell in love with teaching juvenile offenders. I got married and had those two children but it hasn't been boring. Or uncomplicated. That's okay. I'm starting to see that there's a plan, even if I don't necessarily like the plan. I need to have faith and trust that He will bring me through it. I still hate the clichés but I'm beginning to see that they are true. (I hate it when that happens.)
Friday, August 1, 2014
Multiple Step Processes and a Developmentally Delayed Child
Have you ever stopped to think about how many little steps make up your simple everyday activities? Back in middle school, I was given a writing activity asking me to describe the steps involved in tying my shoes. It's amazing, when you break it down, how many processes are involved in that one ordinary task. For kids like our youngest son, simple daily tasks take focus, attention to detail, and effort that you and I take for granted.
How often have you hollered to your children "Go upstairs. Get your teeth brushed and change into your pajamas."? It seems like a very simple command. You interpret it as "go get ready for bed". I would give my oldest son directions like this on a daily basis. It never occurred to me that something so simple could be so, well, not simple. If you gave that same request to my youngest son, he would probably make it upstairs. If you are lucky, he may even start the process of brushing his teeth. Somewhere along the way, a "squirrel moment" is likely to occur. On a nightly basis, it is more normal than not to find him playing with something in the bathroom, or cleaning the sink, or naked in the hallway reading a book (he may or may not have gotten to the teeth). When you ask "what are you supposed to be doing?", his response is generally "What?" He is genuinely baffled. I lost him after "go upstairs".
Multiple step commands are definitely a challenge, especially if they involve an activity that is not routine oriented. We have learned to make requests (commands do NOT work with children with oppositional tendencies). Keep them simple. Keep them specific. Requests need to be related to the activity at hand. Visual prompts are often helpful but can also be distracting. For example, our son's team recommended keeping a checklist or a visual reminder of the steps needed to get ready for bed. Unfortunately, when your child also has obsessive tendencies, such "tricks" or "gimmicks" tend to become a source of distraction and frustration. Our son becomes fixated on the list. He needs to edit the list. Add new items to the list. Update the list. Give a verbal dissertation on why the list is not the best way to complete the activity. It ends up taking longer than simply offering step by step reminders of what he is supposed to be doing. It often becomes the fuel for an argument with a tired child and a worn out parent.
Activities such as tying shoes, getting dressed, riding a bike, getting a bath, picking up after yourself, and having a conversation can be overwhelming and often a serious challenge for children like my son. Pick one of these activities and break down the steps in your head. Now consciously complete them one step at a time. That's what it's like for a person with expressive issues. Stroke patients, children with Attention Deficit Disorder, children with developmental delays all have to take normal daily activities one step at a time with attention to each detail. Those of you that have had a loved one experience a stroke and watched them try to relearn simple life processes can probably relate to what life is like with a child like ours. They are frustrated with themselves for their lack of progress. They are frustrated with you for trying to help them when they don't want to be helped. It is exhausting for everyone involved.
Those of you who have been following our journey for awhile now, know that I have talked about my son's attempts to negotiate different challenges. I've discussed his developmental pattern of burst of development and new skills, followed by lags in ability in which he seems to regress for a time both developmentally and behaviorally. These lags often coincide with a physical growth spurt. It's as if his body can't grow and develop neurologically at the same time. This cyclical pattern of development seems to go in short bursts of just a few months. I have joked and said that just when I'm about to throw in the towel and give up, the good Lord rewards me with one of his developmental bursts and we get to experience a couple months of "the good times". Unfortunately, our son entered one of his lag stages soon after the New Year and is still enmeshed in that stage. His disfluency is the most pronounced I have ever heard it. The drooling that often accompanies the disfluency is in full evidence. His distractability and impulsiveness is controlled by medicine but quite evident when it wears off. Our son's tendency to fixate on phrases, activities, or ideas has been quite pronounced. His obsessiveness and desire to control his environment has been stronger than usual as well. It has been seven or eight months in this lag stage. That is the longest lag we have ever experienced with him.
At our latest neurological appointment, his team recommended having him seen by a neurological speech expert. They wanted to have her evaluate him and see if she could offer any recommendations. We have been through lots of "specialists" and heard lots of "recommendations" so we didn't get too excited by this latest idea but kept an open mind. The appointment went well. We didn't learn anything new or too surprising but we did get some interesting insight and some affirmation that our efforts are not in vane. She concluded that his communication skills are on the lowest end of average to slightly below average. That is how our son has tested from the very beginning. His disfluency is in the severe category at this time. As a result, she recommends immediate and concentrated intervention be given to this issue. His drooling is something that we need to raise his awareness of without embarrassing him or making him uncomfortable. There is no proven method for improving this problem. It is a result of hypotonia (low muscle tone), which is an issue for his fine motor and gross motor skills as well. Her report will list recommendations for his current speech therapist to better focus on the stuttering. She also recommends that we resume private speech therapy sessions from an outside entity. (Yeah!)
Two things came out of her assessment that helped me as a mother. The first was her reassurance that his speech issues/disfluency was a neurological issue. There is nothing we did or didn't do to cause this lag that we are experiencing. The second balm was her commentary on our son. She stated that many children his age with speech issues like his start to develop an aversion to talking to others and communicating with others. Our efforts to make him feel comfortable with himself and his ability to communicate must be paying off because he is more than happy talking to others and sharing his thoughts. He is able to identify how his stuttering makes him feel frustrated but he doesn't seem to have any other negative issues related to how he feels about himself as a person. It's such a relief to hear that from someone else, especially someone who evaluates lots of children with similar and even more severe issues.
As time goes on, we are learning to trust our instincts with our son. The decisions we have made have led us down some dead ends and wrong turns. When we knew better, we did better. Through every step, through every new specialist, through every new diagnosis, evaluation, and recommendation, we talked. We discussed our options. We talked about how it may impact us as individuals and as a family. Most importantly, we tried to keep an open dialogue of how we all feel. I often worry that by writing this blog, I'm putting too much out there about my son. As he grows older, I will probably still write them but not publish them. Being a kid and a teenager is hard enough without Mom broadcasting all your issues. What has kept me writing (and publishing) for now is the knowledge that when we started through this process, I felt terribly alone. No one else I knew had kids going through anything similar. My hope is that others out there experiencing a similar journey have gained insight, learned to be an advocate for their child's needs, or just felt a little less alone. I also hope that others out there who haven't experienced this journey gained a little more empathy for those that are and learned to judge less and love more. God willing, we will all make it through okay. It's a journey. I'm going to love it while I'm living it.
How often have you hollered to your children "Go upstairs. Get your teeth brushed and change into your pajamas."? It seems like a very simple command. You interpret it as "go get ready for bed". I would give my oldest son directions like this on a daily basis. It never occurred to me that something so simple could be so, well, not simple. If you gave that same request to my youngest son, he would probably make it upstairs. If you are lucky, he may even start the process of brushing his teeth. Somewhere along the way, a "squirrel moment" is likely to occur. On a nightly basis, it is more normal than not to find him playing with something in the bathroom, or cleaning the sink, or naked in the hallway reading a book (he may or may not have gotten to the teeth). When you ask "what are you supposed to be doing?", his response is generally "What?" He is genuinely baffled. I lost him after "go upstairs".
Multiple step commands are definitely a challenge, especially if they involve an activity that is not routine oriented. We have learned to make requests (commands do NOT work with children with oppositional tendencies). Keep them simple. Keep them specific. Requests need to be related to the activity at hand. Visual prompts are often helpful but can also be distracting. For example, our son's team recommended keeping a checklist or a visual reminder of the steps needed to get ready for bed. Unfortunately, when your child also has obsessive tendencies, such "tricks" or "gimmicks" tend to become a source of distraction and frustration. Our son becomes fixated on the list. He needs to edit the list. Add new items to the list. Update the list. Give a verbal dissertation on why the list is not the best way to complete the activity. It ends up taking longer than simply offering step by step reminders of what he is supposed to be doing. It often becomes the fuel for an argument with a tired child and a worn out parent.
Activities such as tying shoes, getting dressed, riding a bike, getting a bath, picking up after yourself, and having a conversation can be overwhelming and often a serious challenge for children like my son. Pick one of these activities and break down the steps in your head. Now consciously complete them one step at a time. That's what it's like for a person with expressive issues. Stroke patients, children with Attention Deficit Disorder, children with developmental delays all have to take normal daily activities one step at a time with attention to each detail. Those of you that have had a loved one experience a stroke and watched them try to relearn simple life processes can probably relate to what life is like with a child like ours. They are frustrated with themselves for their lack of progress. They are frustrated with you for trying to help them when they don't want to be helped. It is exhausting for everyone involved.
Those of you who have been following our journey for awhile now, know that I have talked about my son's attempts to negotiate different challenges. I've discussed his developmental pattern of burst of development and new skills, followed by lags in ability in which he seems to regress for a time both developmentally and behaviorally. These lags often coincide with a physical growth spurt. It's as if his body can't grow and develop neurologically at the same time. This cyclical pattern of development seems to go in short bursts of just a few months. I have joked and said that just when I'm about to throw in the towel and give up, the good Lord rewards me with one of his developmental bursts and we get to experience a couple months of "the good times". Unfortunately, our son entered one of his lag stages soon after the New Year and is still enmeshed in that stage. His disfluency is the most pronounced I have ever heard it. The drooling that often accompanies the disfluency is in full evidence. His distractability and impulsiveness is controlled by medicine but quite evident when it wears off. Our son's tendency to fixate on phrases, activities, or ideas has been quite pronounced. His obsessiveness and desire to control his environment has been stronger than usual as well. It has been seven or eight months in this lag stage. That is the longest lag we have ever experienced with him.
At our latest neurological appointment, his team recommended having him seen by a neurological speech expert. They wanted to have her evaluate him and see if she could offer any recommendations. We have been through lots of "specialists" and heard lots of "recommendations" so we didn't get too excited by this latest idea but kept an open mind. The appointment went well. We didn't learn anything new or too surprising but we did get some interesting insight and some affirmation that our efforts are not in vane. She concluded that his communication skills are on the lowest end of average to slightly below average. That is how our son has tested from the very beginning. His disfluency is in the severe category at this time. As a result, she recommends immediate and concentrated intervention be given to this issue. His drooling is something that we need to raise his awareness of without embarrassing him or making him uncomfortable. There is no proven method for improving this problem. It is a result of hypotonia (low muscle tone), which is an issue for his fine motor and gross motor skills as well. Her report will list recommendations for his current speech therapist to better focus on the stuttering. She also recommends that we resume private speech therapy sessions from an outside entity. (Yeah!)
Two things came out of her assessment that helped me as a mother. The first was her reassurance that his speech issues/disfluency was a neurological issue. There is nothing we did or didn't do to cause this lag that we are experiencing. The second balm was her commentary on our son. She stated that many children his age with speech issues like his start to develop an aversion to talking to others and communicating with others. Our efforts to make him feel comfortable with himself and his ability to communicate must be paying off because he is more than happy talking to others and sharing his thoughts. He is able to identify how his stuttering makes him feel frustrated but he doesn't seem to have any other negative issues related to how he feels about himself as a person. It's such a relief to hear that from someone else, especially someone who evaluates lots of children with similar and even more severe issues.
As time goes on, we are learning to trust our instincts with our son. The decisions we have made have led us down some dead ends and wrong turns. When we knew better, we did better. Through every step, through every new specialist, through every new diagnosis, evaluation, and recommendation, we talked. We discussed our options. We talked about how it may impact us as individuals and as a family. Most importantly, we tried to keep an open dialogue of how we all feel. I often worry that by writing this blog, I'm putting too much out there about my son. As he grows older, I will probably still write them but not publish them. Being a kid and a teenager is hard enough without Mom broadcasting all your issues. What has kept me writing (and publishing) for now is the knowledge that when we started through this process, I felt terribly alone. No one else I knew had kids going through anything similar. My hope is that others out there experiencing a similar journey have gained insight, learned to be an advocate for their child's needs, or just felt a little less alone. I also hope that others out there who haven't experienced this journey gained a little more empathy for those that are and learned to judge less and love more. God willing, we will all make it through okay. It's a journey. I'm going to love it while I'm living it.
Monday, June 23, 2014
Those Dreaded Rainman Days
I'm going to start this entry with a short disclaimer: I fully recognize that the challenges we face with our son are on the mild end of the spectrum. On a daily basis, I give thanks that we were dealt the problems that we were and not something more serious like cancer, or Downs Syndrome, or cerebral palsy. In comparison, our challenges are minor. I purposely follow "Hope for Harper" and "Prayers for LEAH" to remind me that we are indeed blessed. On the bad days though, it doesn't matter how mild the disorder, on those days the not knowing, and the not knowing how to help, are completely exhausting and emotionally draining.
I have alluded to our son's "Rainman" episodes on more than one occasion. It is my sick sense of humor trying to cope with something that is completely beyond reason. He fixates on an issue or phrase or situation and can't let go. In those moments, he is unreasonable. Logic does not prevail. It doesn't even come into play. His eyes get this glazed over appearance. Over and over and over, he states repetitively the same statements or phrases. Attempts to distract or move him in a different direction are useless. All the tricks and skills and even gimmicks that we have learned over the years to help him focus or move forward with his day, do not work in these moments, on these days.
Last night, he was tired. Really tired. We were sitting around the campfire in our backyard. He had asked to go in to bed to read the latest "Junie B. Jones" story that we were reading at bedtime. As I read the story to him, cuddled in bed, he was starting to doze. He was tired. When the chapter was over and we finished our prayers, it occurred to him that his brother was still outside at the campfire. His thirteen year old brother usually "goes to bed" when he does. During the school year, it is our policy that the boys need to be on the second floor doing something quiet by 8 pm. Although our oldest is quickly approaching fourteen years old, he never complains about this rule because he knows it makes our lives easier. Tonight, I told our youngest that his brother would be in to bed in a little bit. He was old enough that he could stay up for a little bit yet. I also told him that his brother would be sure to come in and give him and kiss and hug before he went to bed. This was the final straw in a day that had been leading to this moment.
Our son had been having one of those days. It was one of those days in which he was prone to repetitive phrases, repeated behaviors, or failing to let go of a topic or an idea. He has also been stuttering and blocking quite significantly lately. It's probably the worst I've seen it for a very long time. The result has been a child prone to frustration. In spite of that, he's been maintaining pretty well. We've tried to keep him in a routine because that helps but it's also summer. We all need to relax and unwind a little. Today was the perfect storm of scenarios. He was tired. We changed our routine from what was expected and "normal". He was in a fixated, repetitive frame of mind. The combination resulted in a full blown "Rainman meltdown".
I've experienced these for years with him. They aren't anything new or unusual in our world. They don't happen frequently but when they do they are significant and they are exhausting. What struck me so hard this time was my complete failure to see it coming. I was taking a stand for our oldest son who gives so much of himself to help make our life with our youngest son successful. He rarely complains and usually helps and cooperates without a bat of an eye. It was the start of summer and darn it all, the poor kid is almost in high school. He deserves to stay up a little later. Our youngest just needs to adjust. That's what was going through my head at the time. Unfortunately, our youngest can't just adjust. Adjusting is very difficult. Change is difficult, especially when he is already struggling to talk and express himself. Especially when he is already frustrated with himself and his mother who continues to try to control the environment to help him be successful. Especially when he doesn't want things to change because it's one more thing he has no control over.
I tried all the tricks to help him cope. I tried all the gimmicks, logic, and conversations. Nothing. I finally walked away. I gave him a clear expectation and a clear consequence. Guess how that worked. Yeah. That well. His father attempted to intervene. After twenty minutes with no progress and continued crying and venting of frustration, I tagged him back out. After an additional twenty minutes, I stated the clear consequences for his behavior/tantrum and called our oldest to bed. An hour had passed and he was tired and needed to be in bed anyway.
I'd love to say that there was a happy ending. There wasn't. I don't know how to deal with these episodes. I don't know how to break him out of his fixated state. I don't know what to do. Neither does he. That's just it. He doesn't know what to do with himself during those moments either. He is frustrated and angry and sad and doesn't know how to express it or what to say. He feels locked inside of himself and feels like no one can hear him. We don't know how to cope in those moments.
So today, we had an electronics free day. No Kindles, or computers, or TV. He did pretty well. He never asked for any of those things. At the end of the day, he asked if he could have them back tomorrow. I explained that he could if he went to bed when expected without any tantrums. Even though he was verbally manic all day, even though he bounced from activity to activity without purpose or reason, and even though he displayed repetitive behaviors and phrasing, we didn't have any "Rainman" episodes. Why? Why do they happen some days but not others? Why can I prevent them some days but not others? I don't know. I have to remind myself that he doesn't either.
I coped by having a good long hard cry out by the campfire when he was finally settled into bed for the night. My husband and I discussed how we handled it and what to do now and in the future. A friend listened when I just needed someone to talk to and to be silly with. All we can do for now is take it one day at a time and give it to the Lord. I pray He has a plan. I pray He helps me to continue to have patience and fortitude and strength to make it through another day. I pray that I can be the mom he needs me to be even when he doesn't think I am.
I have alluded to our son's "Rainman" episodes on more than one occasion. It is my sick sense of humor trying to cope with something that is completely beyond reason. He fixates on an issue or phrase or situation and can't let go. In those moments, he is unreasonable. Logic does not prevail. It doesn't even come into play. His eyes get this glazed over appearance. Over and over and over, he states repetitively the same statements or phrases. Attempts to distract or move him in a different direction are useless. All the tricks and skills and even gimmicks that we have learned over the years to help him focus or move forward with his day, do not work in these moments, on these days.
Last night, he was tired. Really tired. We were sitting around the campfire in our backyard. He had asked to go in to bed to read the latest "Junie B. Jones" story that we were reading at bedtime. As I read the story to him, cuddled in bed, he was starting to doze. He was tired. When the chapter was over and we finished our prayers, it occurred to him that his brother was still outside at the campfire. His thirteen year old brother usually "goes to bed" when he does. During the school year, it is our policy that the boys need to be on the second floor doing something quiet by 8 pm. Although our oldest is quickly approaching fourteen years old, he never complains about this rule because he knows it makes our lives easier. Tonight, I told our youngest that his brother would be in to bed in a little bit. He was old enough that he could stay up for a little bit yet. I also told him that his brother would be sure to come in and give him and kiss and hug before he went to bed. This was the final straw in a day that had been leading to this moment.
Our son had been having one of those days. It was one of those days in which he was prone to repetitive phrases, repeated behaviors, or failing to let go of a topic or an idea. He has also been stuttering and blocking quite significantly lately. It's probably the worst I've seen it for a very long time. The result has been a child prone to frustration. In spite of that, he's been maintaining pretty well. We've tried to keep him in a routine because that helps but it's also summer. We all need to relax and unwind a little. Today was the perfect storm of scenarios. He was tired. We changed our routine from what was expected and "normal". He was in a fixated, repetitive frame of mind. The combination resulted in a full blown "Rainman meltdown".
I've experienced these for years with him. They aren't anything new or unusual in our world. They don't happen frequently but when they do they are significant and they are exhausting. What struck me so hard this time was my complete failure to see it coming. I was taking a stand for our oldest son who gives so much of himself to help make our life with our youngest son successful. He rarely complains and usually helps and cooperates without a bat of an eye. It was the start of summer and darn it all, the poor kid is almost in high school. He deserves to stay up a little later. Our youngest just needs to adjust. That's what was going through my head at the time. Unfortunately, our youngest can't just adjust. Adjusting is very difficult. Change is difficult, especially when he is already struggling to talk and express himself. Especially when he is already frustrated with himself and his mother who continues to try to control the environment to help him be successful. Especially when he doesn't want things to change because it's one more thing he has no control over.
I tried all the tricks to help him cope. I tried all the gimmicks, logic, and conversations. Nothing. I finally walked away. I gave him a clear expectation and a clear consequence. Guess how that worked. Yeah. That well. His father attempted to intervene. After twenty minutes with no progress and continued crying and venting of frustration, I tagged him back out. After an additional twenty minutes, I stated the clear consequences for his behavior/tantrum and called our oldest to bed. An hour had passed and he was tired and needed to be in bed anyway.
I'd love to say that there was a happy ending. There wasn't. I don't know how to deal with these episodes. I don't know how to break him out of his fixated state. I don't know what to do. Neither does he. That's just it. He doesn't know what to do with himself during those moments either. He is frustrated and angry and sad and doesn't know how to express it or what to say. He feels locked inside of himself and feels like no one can hear him. We don't know how to cope in those moments.
So today, we had an electronics free day. No Kindles, or computers, or TV. He did pretty well. He never asked for any of those things. At the end of the day, he asked if he could have them back tomorrow. I explained that he could if he went to bed when expected without any tantrums. Even though he was verbally manic all day, even though he bounced from activity to activity without purpose or reason, and even though he displayed repetitive behaviors and phrasing, we didn't have any "Rainman" episodes. Why? Why do they happen some days but not others? Why can I prevent them some days but not others? I don't know. I have to remind myself that he doesn't either.
I coped by having a good long hard cry out by the campfire when he was finally settled into bed for the night. My husband and I discussed how we handled it and what to do now and in the future. A friend listened when I just needed someone to talk to and to be silly with. All we can do for now is take it one day at a time and give it to the Lord. I pray He has a plan. I pray He helps me to continue to have patience and fortitude and strength to make it through another day. I pray that I can be the mom he needs me to be even when he doesn't think I am.
Friday, May 23, 2014
What Is Your Definition of Success?
What is your definition of success? That question has been gnawing at me lately. In the past, my definition of success would have been straight A's, a college degree, a successful career, and a family to be proud of. I've earned those things and I am proud of that. I want those same things for my children. But is that success? These days, I would measure success more in terms of degrees and circumstances than in terms of accomplishments or recognition.
My life hasn't always been easy. Those that know me well know that I've faced some personal challenges. In spite of all that, I can say that life has come very easily for me. I'm a Type A, over achiever who isn't afraid to work hard or go after a goal. School came quite easily to me, probably too easy. I don't know if I actually ever studied for a test. As an undergraduate in college, I made note cards and pretended to study because I saw everyone else doing it, but if I'm honest, I never studied for a single final exam and still graduated Cum Laud. When I went for my masters degree, it was pretty much the same story and I graduated with a 4.0. Please don't interpret this as boastful or prideful because my feelings on the matter are quite the opposite. I'm ashamed that I never had to work to earn what I received, especially as I attempt to help my youngest son negotiate the challenges in life that he faces.
Our oldest son has followed very closely in my footsteps. I rarely, if ever, help him with homework. I don't have to. He starts and finishes it on his own. He's self motivated and self directed. Last marking period for the first time ever his grades in one class dropped to a B. I talked to him and simply said "If it's your best, I'm okay with it. If it's not, you need to fix it. You know for yourself what effort you've been putting into it." With the school year quickly coming to a close, his grade in that class this quarter is a 100%. Has he spent hours studying or doing homework? No. He just actually put more effort into his assignments and paid closer attention. Like myself, it comes too easy to him. When life throws challenges at him, it throws him off. It leaves him at a loss. He's not used to life being hard, a challenge, an effort. But the reality of life is that it is hard. It is a challenge. It is an effort. I sometimes worry that he will be unprepared for what life is going to throw at him. His life has been too easy and he hasn't learned that it can be cruel and unfair. I pray that he will rise to the occasion when challenged.
Life has NOT been easy for our youngest son. It has been a challenge from the very beginning. He has struggled to breathe, to roll over, to sit up, to crawl, to walk, to talk, to feed himself, to dress himself, to do anything that most kids and their parents take for granted. If there is a learning curve, he is consistently on the bottom end of that curve. In spite of that, maybe because of that, he always finds a way to improvise, to overcome... to succeed. When he started blocking with his speech, he's the one that discovered if he sang his bedtime prayer, he could get through it without blocking. When he started stuttering, he's the one that discovered that if he drew out his words, he wouldn't stutter and he could get the words out. Time and again, it was him that came up with a way to overcome his obstacles.
He works harder than anyone I've ever met and only gets average or acceptable results. We sit with him and work on homework for hours every night. When it is through, we are all tired and frustrated but we get it done. The school has asked us on more than one occasion if we wanted to reduce the amount of homework that he's required to complete. After a lot of thought, we told them no. It's not realistic for our son's life and his circumstances. Our son is going to have to work harder than others to accomplish the same goals. Telling him he doesn't have to do the same work isn't preparing him for the reality of his life. We monitor the situation closely. If it appears like he is giving all he can and it's not enough, then we change what we are doing and expecting. But he's not failing. He's succeeding. His version of success. He's stuck in a body that won't let him show the world just how clever and spectacular that he really is yet he's never down. He's never depressed. He BOUNDS through life with a smile and a "here I am!" attitude.
This year has been a year of transition in our lives. It took the whole year to find the appropriate medications to help him focus and succeed in the classroom but we finally seem to be getting him stabilized. Homework is taking less and less time. There are even days that he can start an assignment without us, while we throw supper in the oven, and then join him to help him move on or complete the activity. This was unheard of in the past. Success? You bet! He is starting to be able to follow more than one step directions at a time. It's still inconsistent but is it improving? You bet! He is even starting to verbalize how he feels about situations that are occurring without having a meltdown. It's not all the time but it's a start. Is that success? Definitely!
I don't know what life holds for our youngest child. His reality is very different than anything I have ever known or experienced. It's hard for me to relate at times but I'm trying. He's taught me more about life and God and love in his eight short years than I had learned in my whole life before he came into it. What is my definition of success these days? I don't know. He hasn't shown me yet but it's sure to be spectacular.
My life hasn't always been easy. Those that know me well know that I've faced some personal challenges. In spite of all that, I can say that life has come very easily for me. I'm a Type A, over achiever who isn't afraid to work hard or go after a goal. School came quite easily to me, probably too easy. I don't know if I actually ever studied for a test. As an undergraduate in college, I made note cards and pretended to study because I saw everyone else doing it, but if I'm honest, I never studied for a single final exam and still graduated Cum Laud. When I went for my masters degree, it was pretty much the same story and I graduated with a 4.0. Please don't interpret this as boastful or prideful because my feelings on the matter are quite the opposite. I'm ashamed that I never had to work to earn what I received, especially as I attempt to help my youngest son negotiate the challenges in life that he faces.
Our oldest son has followed very closely in my footsteps. I rarely, if ever, help him with homework. I don't have to. He starts and finishes it on his own. He's self motivated and self directed. Last marking period for the first time ever his grades in one class dropped to a B. I talked to him and simply said "If it's your best, I'm okay with it. If it's not, you need to fix it. You know for yourself what effort you've been putting into it." With the school year quickly coming to a close, his grade in that class this quarter is a 100%. Has he spent hours studying or doing homework? No. He just actually put more effort into his assignments and paid closer attention. Like myself, it comes too easy to him. When life throws challenges at him, it throws him off. It leaves him at a loss. He's not used to life being hard, a challenge, an effort. But the reality of life is that it is hard. It is a challenge. It is an effort. I sometimes worry that he will be unprepared for what life is going to throw at him. His life has been too easy and he hasn't learned that it can be cruel and unfair. I pray that he will rise to the occasion when challenged.
Life has NOT been easy for our youngest son. It has been a challenge from the very beginning. He has struggled to breathe, to roll over, to sit up, to crawl, to walk, to talk, to feed himself, to dress himself, to do anything that most kids and their parents take for granted. If there is a learning curve, he is consistently on the bottom end of that curve. In spite of that, maybe because of that, he always finds a way to improvise, to overcome... to succeed. When he started blocking with his speech, he's the one that discovered if he sang his bedtime prayer, he could get through it without blocking. When he started stuttering, he's the one that discovered that if he drew out his words, he wouldn't stutter and he could get the words out. Time and again, it was him that came up with a way to overcome his obstacles.
He works harder than anyone I've ever met and only gets average or acceptable results. We sit with him and work on homework for hours every night. When it is through, we are all tired and frustrated but we get it done. The school has asked us on more than one occasion if we wanted to reduce the amount of homework that he's required to complete. After a lot of thought, we told them no. It's not realistic for our son's life and his circumstances. Our son is going to have to work harder than others to accomplish the same goals. Telling him he doesn't have to do the same work isn't preparing him for the reality of his life. We monitor the situation closely. If it appears like he is giving all he can and it's not enough, then we change what we are doing and expecting. But he's not failing. He's succeeding. His version of success. He's stuck in a body that won't let him show the world just how clever and spectacular that he really is yet he's never down. He's never depressed. He BOUNDS through life with a smile and a "here I am!" attitude.
This year has been a year of transition in our lives. It took the whole year to find the appropriate medications to help him focus and succeed in the classroom but we finally seem to be getting him stabilized. Homework is taking less and less time. There are even days that he can start an assignment without us, while we throw supper in the oven, and then join him to help him move on or complete the activity. This was unheard of in the past. Success? You bet! He is starting to be able to follow more than one step directions at a time. It's still inconsistent but is it improving? You bet! He is even starting to verbalize how he feels about situations that are occurring without having a meltdown. It's not all the time but it's a start. Is that success? Definitely!
I don't know what life holds for our youngest child. His reality is very different than anything I have ever known or experienced. It's hard for me to relate at times but I'm trying. He's taught me more about life and God and love in his eight short years than I had learned in my whole life before he came into it. What is my definition of success these days? I don't know. He hasn't shown me yet but it's sure to be spectacular.
Thursday, March 27, 2014
My Bad Day
My mom got another one of those emails today. They said I had a bad day at school. I can understand why they might say that. Sometimes I can't focus on what they are saying or what they are doing. Other times, I think of something that needs to be done and I hop right out of my seat to go do it. And sometimes, I just start to cry. I'm so frustrated and sad. I don't know what else to do. If they knew what it took for me to make it through a day, they might say I had a pretty good day. If they only knew.
At the end of the day, I'm so tired that sometimes I fall asleep in the middle of saying my prayers. It takes a lot of energy trying to be good and do everything everyone expects of me. I sleep very soundly and would prefer to sleep ten to twelve hours most nights. Even though I go to bed by eight o'clock every night, I still have a hard time waking up in the morning. It takes me awhile to tolerate light, or sound... or people. I am NOT a morning person.
Getting dressed isn't as hard as it used to be. I'm getting pretty good at it. I still have trouble buttoning and zipping jeans so I mostly wear jogging pants or athletic pants to school but I'm getting better and better with my jeans. Mom gets frustrated with me sometimes because I still put my shirt on backwards most days. She thinks I should be able to do this correctly by now so when she gets frustrated with me, I get frustrated with her. I don't mean to do it wrong all the time. Some days I still put my socks on with the heel on top but not as often. I'm getting better at fixing them when I get it wrong. I can also put on my own sneakers and pull the strings tight. My hands don't seem to cooperate with the rest of the shoe tying process. It makes me really frustrated, especially when we are trying to get to the bus on time. Mom makes my brother tie them for me on school days. I hate it when he makes comments that I should be able to do this by now. I know that but my hands won't do it right. We practice on the weekends when we have more time and shoe tying is our new summer goal. I want to be able to do it by myself by the time I start third grade.
I pick a fight with my brother and my mom every morning when it's time to go out to the bus. I'm really hoping that I won't have to go to school or ride on that bus. I just want to stay home with my family. I tell them every day that I miss them and that time with them is the best part of my day. They still make me go. Sometimes I think they don't understand.
My bus ride is forty minutes long. I have a really hard time sitting still and staying calm. Plus there is this girl who rides my bus that is also in my class at school who says mean things to me and makes me cry. She tells me I smell and I'm a baby. I really just want her to be my friend but she's so mean. I don't understand why. Sometimes she gets the other kids on the bus or at school to say mean things to me too. It's really hard for me to understand because everyone else I know loves me. All the people at the fire hall love me. All the people at church love me. And all of my extended family love me and want to spend time with me. Why do they act like that at school? It hurts and it's confusing.
I really like my teachers and all the grown ups. It makes me sad that I frustrate them sometimes. When I have to go to the bathroom, I forget that I have to raise my hand and ask. I don't realize I have to go until it's almost too late and I don't want to have an accident. That is embarrassing. So when I realize I have to go, I jump up and go to the bathroom without asking. My teacher gets upset with me. When the other classes are in the hall going somewhere, I can't stop hearing them. I can't focus on what my teacher is saying or what I'm supposed to be doing. My teacher tries to help by teaching with the door closed but I can still hear them. I know it frustrates her. I'm really sorry.
Sometimes, I do something wrong or something happens and the teachers ask me to tell them about it. I don't always want to tell them because I don't want them to get mad at me again. It always feels like I'm upsetting them. Other times, I just can't explain it. The words are right in my head. I know what happened but I can't seem to be able to tell a story from beginning to end in a logical order that makes sense to other people. When they ask me questions to help me try to explain, I get so frustrated. Why can't they just understand what I am telling them? It's so hard to get the words out some days when my stuttering and disfluencies are at their worst. Then they ask me too many questions. I just don't know. I just want them to stop asking me questions! Don't they know how hard it is for me to explain things?
I have one best friend and one good friend. They are both in different classes this year. I miss them so much. Because the other kids don't like the way I stare, they think I'm weird and don't always want to play with me. They don't realize that staring is learning. I'm watching what they are doing and trying to process it. I want to be like them.
After the day is over and I've survived another long bus ride home with the mean girl, I finally get to be home with my family. I'm so tired. I wish they knew how much I missed them and how much I wanted to stay home with them. Instead, I often take my frustration out on them, especially when I have to start working on all my homework. Because I need extra help, that means I have extra homework. In addition to my regular homework, I also have extra practice spelling sheets to complete and an extra reading story to read each night. If my mom and dad don't keep me focused, I actually fall asleep in the middle of reading the stories. There are nights that Mom has to write my teachers a note telling them that I fell asleep around five or six o'clock and didn't get my homework done.
They said I had a bad day. I know I did. That's why I get so frustrated sometimes. I love people so much and want to make everyone happy. Being with other people makes me smile and laugh. The energy inside of me just wants to burst out of me but school doesn't like me like that. They want me quiet and still. So I try. I really do. But I know I'm not doing it right and that makes me sad.
At the end of the day, I'm so tired that sometimes I fall asleep in the middle of saying my prayers. It takes a lot of energy trying to be good and do everything everyone expects of me. I sleep very soundly and would prefer to sleep ten to twelve hours most nights. Even though I go to bed by eight o'clock every night, I still have a hard time waking up in the morning. It takes me awhile to tolerate light, or sound... or people. I am NOT a morning person.
Getting dressed isn't as hard as it used to be. I'm getting pretty good at it. I still have trouble buttoning and zipping jeans so I mostly wear jogging pants or athletic pants to school but I'm getting better and better with my jeans. Mom gets frustrated with me sometimes because I still put my shirt on backwards most days. She thinks I should be able to do this correctly by now so when she gets frustrated with me, I get frustrated with her. I don't mean to do it wrong all the time. Some days I still put my socks on with the heel on top but not as often. I'm getting better at fixing them when I get it wrong. I can also put on my own sneakers and pull the strings tight. My hands don't seem to cooperate with the rest of the shoe tying process. It makes me really frustrated, especially when we are trying to get to the bus on time. Mom makes my brother tie them for me on school days. I hate it when he makes comments that I should be able to do this by now. I know that but my hands won't do it right. We practice on the weekends when we have more time and shoe tying is our new summer goal. I want to be able to do it by myself by the time I start third grade.
I pick a fight with my brother and my mom every morning when it's time to go out to the bus. I'm really hoping that I won't have to go to school or ride on that bus. I just want to stay home with my family. I tell them every day that I miss them and that time with them is the best part of my day. They still make me go. Sometimes I think they don't understand.
My bus ride is forty minutes long. I have a really hard time sitting still and staying calm. Plus there is this girl who rides my bus that is also in my class at school who says mean things to me and makes me cry. She tells me I smell and I'm a baby. I really just want her to be my friend but she's so mean. I don't understand why. Sometimes she gets the other kids on the bus or at school to say mean things to me too. It's really hard for me to understand because everyone else I know loves me. All the people at the fire hall love me. All the people at church love me. And all of my extended family love me and want to spend time with me. Why do they act like that at school? It hurts and it's confusing.
I really like my teachers and all the grown ups. It makes me sad that I frustrate them sometimes. When I have to go to the bathroom, I forget that I have to raise my hand and ask. I don't realize I have to go until it's almost too late and I don't want to have an accident. That is embarrassing. So when I realize I have to go, I jump up and go to the bathroom without asking. My teacher gets upset with me. When the other classes are in the hall going somewhere, I can't stop hearing them. I can't focus on what my teacher is saying or what I'm supposed to be doing. My teacher tries to help by teaching with the door closed but I can still hear them. I know it frustrates her. I'm really sorry.
Sometimes, I do something wrong or something happens and the teachers ask me to tell them about it. I don't always want to tell them because I don't want them to get mad at me again. It always feels like I'm upsetting them. Other times, I just can't explain it. The words are right in my head. I know what happened but I can't seem to be able to tell a story from beginning to end in a logical order that makes sense to other people. When they ask me questions to help me try to explain, I get so frustrated. Why can't they just understand what I am telling them? It's so hard to get the words out some days when my stuttering and disfluencies are at their worst. Then they ask me too many questions. I just don't know. I just want them to stop asking me questions! Don't they know how hard it is for me to explain things?
I have one best friend and one good friend. They are both in different classes this year. I miss them so much. Because the other kids don't like the way I stare, they think I'm weird and don't always want to play with me. They don't realize that staring is learning. I'm watching what they are doing and trying to process it. I want to be like them.
After the day is over and I've survived another long bus ride home with the mean girl, I finally get to be home with my family. I'm so tired. I wish they knew how much I missed them and how much I wanted to stay home with them. Instead, I often take my frustration out on them, especially when I have to start working on all my homework. Because I need extra help, that means I have extra homework. In addition to my regular homework, I also have extra practice spelling sheets to complete and an extra reading story to read each night. If my mom and dad don't keep me focused, I actually fall asleep in the middle of reading the stories. There are nights that Mom has to write my teachers a note telling them that I fell asleep around five or six o'clock and didn't get my homework done.
They said I had a bad day. I know I did. That's why I get so frustrated sometimes. I love people so much and want to make everyone happy. Being with other people makes me smile and laugh. The energy inside of me just wants to burst out of me but school doesn't like me like that. They want me quiet and still. So I try. I really do. But I know I'm not doing it right and that makes me sad.
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