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.
Thursday, November 26, 2015
Tuesday, November 10, 2015
Hanging In There
It often feels as if I find myself living in a world where it's very easy to quit. Many things in life that used to be considered constants, like marriage, family, and faith, seem very disposable these days. Some things just shouldn't be given up on, no matter how hard it gets.
Life with our youngest son has never been easy. It's easy to love him. That smile. That sparkle in his eyes. That deep belly laugh that bubbles up. Loving him is the easy part. Raising him is not. Preparing him for what's before him is not. Middle school is coming. Far too soon.
Our son's behavior has stabilized to a managable level. We have very few meltdowns these days. He seems to have learned how to regulate his anger and frustration. The manic repetitive behaviors that he can be prone to have diminished as well. These are all very positive advancements.
My husband and I have known for awhile that our son was in the midst of another regression phase in his abnormal developmental cycle. As I have discussed previously, he tends to experience a burst of development that eventually plateaus. That plateau is most often followed by a regression period. This phase is almost always accompanied by severe stuttering and blocking, increased drooling, inattentiveness, distractedness, clumsiness, and loss of self-help skills. This period of regression is often followed by another burst of development. Ironically, these regression phases often accompany a large growth spurt, almost as if his body can't physically grow and maintain intellectual development at the same time.
At our son's fourth grade parent teacher conference last week, his team was very frustrated. They had implemented both traditional and creative methods to try to help our son stay on track, self-regulate, self-monitor, and learn. Unfortunately, few of their efforts seem to be helping. Their frustration directly mirrored the frustration my husband and I have been feeling at home. At school, he is eating his pencils. Actually eating his pencils. Chewing the tips off. Eating the erasers and metal ends. He is wearing wrist bands and chew necklaces. They tried chewing manipulatives. I bought him chewable pencil toppers from the Autism Support website. They tried gum, candy, sour hard candy. Nothing seems to stop the chewing.
They cannot get him to focus or remain focused. It requires physical touch to get him to go to his seat and keep him seated. It's not oppositional behavior or aggressive behavior. He simply gets up and wanders around. He takes forever to get his belongings and settle in to work. When seated, he stares into space or stares at his peers. He forgets everything, including clothing, agendas, books, lunch bags, anything not attached to his body. Things that we read and reviewed at home, things that we know that he knows and understands, he gets wrong on the tests. There is no consistency to the type of questions that he gets wrong. Nothing that can be pin pointed to focus on with our studying. He is consistently inconsistent.
Against all odds, he scored a 91% in math on his report card. He was so excited. He calls himself a math genius. He scored a Satisfactory in science. Predictably, he scored a 65% in reading on his report card. Passing is 65%. We wondered if bonus points were utilized. Reading is a significant challenge for us each night. Getting through the reading with a child that stutters and blocks is PAINFUL. We have utilized many coping techniques including techniques from his speech sessions; a clear acrylic reading tracker; sharing/dividing up the passages; note cards/study cards; question and answer discussion, etc. In spite of our best efforts, and their best efforts at school, he is passing by a single point. It is especially frustrating because it isn't a true reflection of how very bright he is and what he is capable of.
His Title I teacher, his primary support and our primary contact with questions, concerns, and recommendations, is going on maternity leave in two weeks. She will not return until March. His classroom teacher is going on surgical leave in two weeks and will not return until January. He isn't due to be tested by the school psychologist until March. His Individualized Education Plan is not due for review until April. His neurological team wants a full scale evaluation by the school team but that won't occur until the spring. The kid that needs the most consistency will have none. We are left with lots of questions but very few answers.
So what do we do? Where do we go from here?
As a family, we keep life as consistent as possible. We keep him in occupational therapy and speech therapy at the hospital. We act as a resource for the school team, both old and new. We continue to read and research, question, and challenge. Our goal at this point is to keep him from regressing further. We hope for growth but will not become disheartened if none occurs. This year may be a wash with little progress gained. Our frustration is that only puts him that much further behind his same age peers. Unfortunately, we can't change his circumstances or his developmental cycle. He is who he is. The school circumstances are what they are. We will continue to fight for him, fight with him, and support him every single step of the way. We will give him our best.
Tears will be shed. Fears will be faced. I pray that progress will be made. He is too important to give up on. He is worth the effort.
Life with our youngest son has never been easy. It's easy to love him. That smile. That sparkle in his eyes. That deep belly laugh that bubbles up. Loving him is the easy part. Raising him is not. Preparing him for what's before him is not. Middle school is coming. Far too soon.
Our son's behavior has stabilized to a managable level. We have very few meltdowns these days. He seems to have learned how to regulate his anger and frustration. The manic repetitive behaviors that he can be prone to have diminished as well. These are all very positive advancements.
My husband and I have known for awhile that our son was in the midst of another regression phase in his abnormal developmental cycle. As I have discussed previously, he tends to experience a burst of development that eventually plateaus. That plateau is most often followed by a regression period. This phase is almost always accompanied by severe stuttering and blocking, increased drooling, inattentiveness, distractedness, clumsiness, and loss of self-help skills. This period of regression is often followed by another burst of development. Ironically, these regression phases often accompany a large growth spurt, almost as if his body can't physically grow and maintain intellectual development at the same time.
At our son's fourth grade parent teacher conference last week, his team was very frustrated. They had implemented both traditional and creative methods to try to help our son stay on track, self-regulate, self-monitor, and learn. Unfortunately, few of their efforts seem to be helping. Their frustration directly mirrored the frustration my husband and I have been feeling at home. At school, he is eating his pencils. Actually eating his pencils. Chewing the tips off. Eating the erasers and metal ends. He is wearing wrist bands and chew necklaces. They tried chewing manipulatives. I bought him chewable pencil toppers from the Autism Support website. They tried gum, candy, sour hard candy. Nothing seems to stop the chewing.
They cannot get him to focus or remain focused. It requires physical touch to get him to go to his seat and keep him seated. It's not oppositional behavior or aggressive behavior. He simply gets up and wanders around. He takes forever to get his belongings and settle in to work. When seated, he stares into space or stares at his peers. He forgets everything, including clothing, agendas, books, lunch bags, anything not attached to his body. Things that we read and reviewed at home, things that we know that he knows and understands, he gets wrong on the tests. There is no consistency to the type of questions that he gets wrong. Nothing that can be pin pointed to focus on with our studying. He is consistently inconsistent.
Against all odds, he scored a 91% in math on his report card. He was so excited. He calls himself a math genius. He scored a Satisfactory in science. Predictably, he scored a 65% in reading on his report card. Passing is 65%. We wondered if bonus points were utilized. Reading is a significant challenge for us each night. Getting through the reading with a child that stutters and blocks is PAINFUL. We have utilized many coping techniques including techniques from his speech sessions; a clear acrylic reading tracker; sharing/dividing up the passages; note cards/study cards; question and answer discussion, etc. In spite of our best efforts, and their best efforts at school, he is passing by a single point. It is especially frustrating because it isn't a true reflection of how very bright he is and what he is capable of.
His Title I teacher, his primary support and our primary contact with questions, concerns, and recommendations, is going on maternity leave in two weeks. She will not return until March. His classroom teacher is going on surgical leave in two weeks and will not return until January. He isn't due to be tested by the school psychologist until March. His Individualized Education Plan is not due for review until April. His neurological team wants a full scale evaluation by the school team but that won't occur until the spring. The kid that needs the most consistency will have none. We are left with lots of questions but very few answers.
So what do we do? Where do we go from here?
As a family, we keep life as consistent as possible. We keep him in occupational therapy and speech therapy at the hospital. We act as a resource for the school team, both old and new. We continue to read and research, question, and challenge. Our goal at this point is to keep him from regressing further. We hope for growth but will not become disheartened if none occurs. This year may be a wash with little progress gained. Our frustration is that only puts him that much further behind his same age peers. Unfortunately, we can't change his circumstances or his developmental cycle. He is who he is. The school circumstances are what they are. We will continue to fight for him, fight with him, and support him every single step of the way. We will give him our best.
Tears will be shed. Fears will be faced. I pray that progress will be made. He is too important to give up on. He is worth the effort.
Subscribe to:
Posts (Atom)