The New Year is all about looking back and reflecting on the year that is coming to an end, while looking forward to a new year, new beginnings, and new goals. We knew that 2019 was going to bring significant transition and change for our family. It wasn't something I was looking forward to because I don't particularly care for change. Regardless of my feelings on the matter, change was going to happen and we needed to deal with it with as much grace as we could manage.
My philosophy on life tends to be laugh at life or pull up your big girl pants and muster through it. Whining and crying doesn't change the situation. So when our oldest son was all set to graduate and head off to college, I figured this was no big deal. We had raised a kind hearted, respectful, hardworking, civic minded young man. It was time for him to move onto the next phase of his life. I was excited for him. Proud of him. It was no big deal.
Except it was. It was devastating for me in a way I couldn't have anticipated or imagined. I was tearful and weepy on and off for months. Out of no where. I would be washing dishes and burst into tears. He would be moody with senior-itis and I would retreat to my bedroom to privately cry and lick my wounds. Everything was intensely painful and personal. It felt like I was losing a part of my body. Part of my soul. I was losing my baby.
As a result, in hindsight, most of my focus and energy for the first half of the year was invested in trying to manage these feelings, this transition, and this change. I probably wasn't the best mother, wife, or friend. I was in mourning but not fully recognizing it.
We were very concerned how our oldest son graduating and leaving for college would impact his little brother. In the past, they have been very close. He was our youngest son's hero. He idolized him. They drove to school together every day for two years. They marched in band together. Our son going off to college would impact us both emotionally but also through the daily routine and structure which is so important for our youngest.
Over our oldest son's senior year, he struggled with his relationship with his brother. He was late to come to this stage of acceptance that his father and I had already had to navigate. Although he loved his brother, during his senior year, our oldest wanted his brother to be "normal", or "typical" for all his important milestone events that he was experiencing. I don't know if he recognized it at the time but he was embarrassed by his brother - his brother who was too loud, too excited, lacked personal space, touched people, got in their conversations, got in their faces. Couldn't he just stop! Couldn't he just act like everyone else? The reality was, no, he couldn't. He could only be himself. This phase of their relationship was hard on all of us who were all dealing with our own transition and grief. It wasn't always fun to live with us.
This year was also the year that we would finally get answers regarding our son's diagnosis. For thirteen years, we had searched for the WHY? We had a laundry list of supposedly unrelated symptoms and disorders. For years, I kept asking if we were missing something. Could these be a sign of something bigger that we weren't seeing? No. I was always told no. Could his scoliosis and the previously undetected, resolved Spina Bifida be related to his physical developmental concerns. No. One was skeletal. The other was neurological. They were not related. Could the drooling and speech be related to the low muscle tone and joint laxity? No. They were unrelated to one another. And on and on and on...
Finally, a new neurology physician assistant decided that she wanted to repeat the genetic screening that had been completed twelve years earlier but using the latest technology and screening tools. And what we found was life changing. We had our diagnosis, CHD3 Gene Mutation or Snijders Blok Campeau Syndrome, and suddenly everything made sense. That laundry list of supposedly unrelated symptoms and disorders WERE related. They did make sense. They were all of the symptoms of our previously undiagnosed condition. Yes, the scoliosis was related. Yes, the joint laxity and low muscle tone were related. Yes, the speech issues and drooling which were unique and different were spot on, 100%, related. And yes, the autistic tendencies and behaviors that we experienced in spite of his highly social nature was 100% related. We had answers to a thirteen year old mystery.
Now that we had a diagnosis, and our son was thirteen, soon to be fourteen, I started asking what's the next step. Where do we go from here? How can we ensure that he will be not only self-sufficient, but also independent, happy, and successful post-high school? His path to independence will most likely look very different from his brother's. What services are available to assist with this? What supports are available to assist with this? Where do we go next?
We met as an educational team to discuss those next steps. The medical/neurological team told us it had nothing to do with them because it wasn't a medical issue, it was an educational issue. If you've been reading my blog for any length of time, this is not a new issue. The disconnect between the medical world and the educational world in relation to diagnosis, treatment, and assistance with children (and future adults) with special needs is criminal in my mind. IT IS THE SAME CHILD! How are they unrelated? The issue boils down to funding. They are funded differently. The diagnostic tools and requirements are different. Intellectually, I understand all that. As a mother that has had to fight every day since my child was two weeks old for answers and help, I just don't get it. As you can tell, it makes me angry. Very angry. I am intellectually gifted, highly educated, and economically independent and still, it has been a struggle for me to support my son in all the ways that he has needed me. How do people without those blessings do it? How do these children get the help that they need? How do they grow into their best version of themselves?
Anyway, the educational team met to discuss our next steps because our son's next IEP would start to include transition components to help him better prepare for graduation and self-sufficiency. Based on the conversation, the new diagnosis, and team feedback, it was decided that a full re-evaluation would be completed and that autism screenings would be used for the first time to see if he had any qualifying features. Long story short, at the completion of the screenings, our son was found to be highly functioning on the spectrum. He now has an Autism diagnosis. So all of you that have asked me over the years if our son is autistic, I can now tell you that yes, he is. The autism diagnosis opens up the door for future transition services that previously would not have been available to him.
As for the neurology team? They very diplomatically feel that they would not necessarily agree with an autism diagnosis but understand the "education" necessities of that diagnosis. We nodded and smiled through the appointment but know in our hearts it is an accurate diagnosis. They see our thirteen year old son who comes to every appointment with two parents who tag team keep him in check. He has been taught by those two parents what is appropriate public behavior and what is inappropriate public behavior. They see him twice a year for an hour in the best possible scenario because we believe in setting our son up for success. They see a boy who has received early intervention and therapeutic services (OT, PT, and speech) since he was nine months old. They see a child who was raised by a master level teacher who minored in early intervention herself who has worked every day of her life to ensure that her son is as successful as he can be. Do they see the meltdown days? No. Do they see the days where his brain can't put all the pieces together and he bounces from activity to activity to thought to thought with no organization or connection? No. Do they see the days when he is fixated, almost obsessed, by an idea that he can't let go and can't move forward from? No. Do they see him in crowded, noisy events where he spins in circles and touches people he doesn't know and invades their space and interrupts their conversations because he's so overstimulated by the event and the excitement of the moment? No. Were they there when it took us ELEVEN years to successfully watch a movie in the movie theater because it was too loud, too big, too dark, and too emotionally overwhelming for him? No. Are they there when he overeats, overreacts, and can't self-regulate at family and friend events because he's so overstimulated and excited to be there? No. No they aren't. But we are. And we will continue to be there. And we will continue to work on these skills until one day, no one will ever believe that he has an autism diagnosis or has to ask "What's wrong with him?" or "What does he have?" (and yes, people have politely asked us that).
Fall brought about those big changes. And guess what? They weren't that bad. Matter of fact, they were good. Really good. Our oldest son moved into college 2 1/2 hours away. Our youngest took the field in marching band for the first time without his brother. I am now my youngest son's ride to and from school every day. And we are all surviving. Our oldest is loving his program of study at college. He gets a break from all of us and the intensity that comes with living with us. Our youngest not only survived his marching season but was pretty responsible and self-reliant about it. Many of the older band members stepped forward as a support and resource for him when needed. (I love band kids! They are the best!). By taking my son to school and picking him up every day, I lost vital prep time in my classroom but gained valuable one on one time with my son. He now his an increased window of time at the end of the day to organize his thought and be sure that he has all the materials he needs for homework at night. We have had very few incidents of forgotten homework, forgotten items. This is a huge step for him. He has stepped up and been more self-sufficient and self-reliant. He is growing as a young man after stepping out of his brother's shadow.
This fall, we also increased our son's ADD medicine by 1 mg. We were concerned that it would have an increased sedation effect. Unlike med increased in the past, it did not. He had physically grown so much that he NEEDED the 1 mg increase. His body responded very well to it and he has experienced increased focus.
Through all of our personal ups and downs, relationship struggles, diagnoses, etc, my one consistent truth and mainstay was my classroom and my role within that classroom. My one truth in life is that I am a good teacher. I "get" kids that many others don't. All of my almost twenty-five years in the classroom have been with at risk populations. I am very good at what I do. This isn't bragging. It's my truth that I know in the core of who I am. This fall, for the first time since I was a new teacher, I questioned my ability to effectively help my students. This year has been my most challenging in a very long time. Can I help them? Can I be enough, do enough? I have had to ask for help; re-examine how and why I do things; read and study topics far outside my venue of knowledge; and step outside my comfort zone. It has been an emotionally exhausting year.
The blessings that have come from this challenging experience is the addition of a phenomenal third person in my classroom. She has helped organize my room and my resources. She has become a friend and someone that I rely on. I also know that if the kids coming into my classroom, with all my experience and understanding of kids from at risk populations, are this challenging for me, then we as schools and communities need to start examining how we support teachers and classrooms. Social-emotional learning must become a significant priority if success will be found within today's schools. You can believe that I will be an even more vocal advocate for these changes within my region. I will also continue to research and put into place the best practice that research is supporting, to help my kids find success.
And as for the boys and their relationship...
Distance can make the heart grow fonder. They have discovered a common love for Nerf gun warfare. At any moment, my two six foot - plus sons can break into full on Nerf war. Such laughing and yelling and pandemonium! It's beautiful. Dangerous for their father and I, but beautiful.
And through it all, my dear, sweet steady husband supports us, loves us, roots for us, and stands for us. Without him, none of us would find the success that we continue to find. He is our voice of reason. Our calm in the storm. He is our touchstone that keeps us centered.
I wouldn't ask for a repeat of 2019. I'm glad to see it come to an end. But the challenges of 2019 have brought about some serious growth and changes that we as individuals, and we as a family needed. Whether we wanted them or not. Dear 2020, please be kinder and gentler to us! We've grown enough for now. We could use some peace for awhile.
Wednesday, January 1, 2020
Saturday, October 12, 2019
Growth Spurts and Developmental Lags
One of the consistent characteristics of our son's developmental condition has been the inconsistency of it. A real oxymoron, huh? He follows large bursts of growth and skill development with quiet plateaus of "normalcy". About the time we settle into complacency and start to enjoy the progress we have made, it all starts to slide away and he enters what we refer to as a developmental lag.
We have experienced a rather lengthy plateau over the last year or so. So much so, that many of his support services have been reduced to a monitoring status or reduced in frequency and intensity. We have instead started focusing on transition services and the possibility of an independent and self-supported adult future. His special education team is just finishing up the re-evaluation report of the IEP that will take him into high school. Our family has moved into more of a support mode and less of a supervision and support mode.
This year has been a year of significant transition and change. Through it all, our son has stepped up, been fairly responsible, and managed good grades. We've been beyond proud of the progress he has made.
Two weeks ago, we started noticing an increase in his stuttering, his drooling, and his chewing clothing. Those behaviors had almost completely disappeared over the last year. He's identified that he has "squirrel brain". In other words, he's having trouble organizing the very busy, very active brain that wants to distract him. This week, we received a message from school that he was behind in a couple assignments. For the first time since school started, he forgot things he needed for homework and I had to run out to the school to pick them up. With great communication from his team at school, we got him caught up on his work and helped him re-organize himself. His stuttering and blocking has increased so significantly that people who only see him on a weekly basis have been absolutely shocked by the serious change in his speech in such a short period of time. One word answers are almost more than he can manage in the evenings when he is tired. The facial ticks and other stuttering associated behaviors, like hiding his mouth and fingers in his mouth to hide it as he stutters, have all returned. Those behaviors had completely disappeared over the last year. The rapid return of these dormant behaviors is shocking. Stunning even.
A significant developmental lag has begun. Maybe the worst we've seen in awhile.
So, we do what we do. We contacted his education team and updated them on what is happening. All of his support service individuals are newer members to his team. They haven't ridden one of these waves with us before. They only know our son that is happy-go-lucky; disorganized but hard working; forgetful but sweet. They don't know how deep these regressions can go or the behaviors that he has learned to hide and overcome. So we warned them of what could be coming. We prepare them so they know what to look for.
We reach out to our family and friends in our inner circle. We let them know what we are experiencing. We remind them of what works to support our boy as he struggles against a body that doesn't work with a brain that is trying to catch up to an eight inch growth spurt. We remind them what doesn't work and what will only cause anxiety and delay growth out of this latest lag.
Then we try to find the balance between reminding our boy about what tools he has and what skills he has learned to help him cope while not nagging, not hovering, not taking away his new found independence. We support while trying to avoid dependency. We remind him to "sli-i-i-de" his speech when he jams up. We let him talk with eye contact and without interruption so he doesn't feel pressured which only increases the likelihood that he will block up. We don't finish words and sentences for him. We let him work it out. We acknowledge the struggle but normalize it by keeping it matter of fact. "That was a tough one. Good job sliding through it bud. Remember to breathe. We will wait for you to finish. No rush." We keep life as normal and as consistent as we can. When he needs 500 hugs and tells us a 1,000 times that he loves us, we roll with it and reciprocate because he needs the reassurance right now. We make sure he is eating good nutritious foods and getting lots of rest. Then we wait for things to run their course.
These developmental lags used to send me into an internal panic. I think I feared he wouldn't pull out of them or that he would regress and lose skills. After fourteen years of riding this wave, it still gives me a sick stomach deep down inside. But now I know we have the skills to work him through what he's up against. We have a great relationship with his school and his education team. We have good family and friend supports. My husband and I have a solid relationship and know how to navigate this together now. Our son has built some solid skills to help him work through these lags. He has also made some friendships with kids and adults who will support him for who he is and know his heart.
Unfortunately, based on the amount he is eating, I don't think we are at the end of this crazy growth spurt that seems to have set off this latest developmental lag. At only thirteen years-old, he is already six foot tall with size 14 feet. Hopefully, he will reach his final size and his brain chemistry can finally catch up with all that growth. In the meantime, we have his back and we will support him wherever this goes and however long it takes.
We have experienced a rather lengthy plateau over the last year or so. So much so, that many of his support services have been reduced to a monitoring status or reduced in frequency and intensity. We have instead started focusing on transition services and the possibility of an independent and self-supported adult future. His special education team is just finishing up the re-evaluation report of the IEP that will take him into high school. Our family has moved into more of a support mode and less of a supervision and support mode.
This year has been a year of significant transition and change. Through it all, our son has stepped up, been fairly responsible, and managed good grades. We've been beyond proud of the progress he has made.
Two weeks ago, we started noticing an increase in his stuttering, his drooling, and his chewing clothing. Those behaviors had almost completely disappeared over the last year. He's identified that he has "squirrel brain". In other words, he's having trouble organizing the very busy, very active brain that wants to distract him. This week, we received a message from school that he was behind in a couple assignments. For the first time since school started, he forgot things he needed for homework and I had to run out to the school to pick them up. With great communication from his team at school, we got him caught up on his work and helped him re-organize himself. His stuttering and blocking has increased so significantly that people who only see him on a weekly basis have been absolutely shocked by the serious change in his speech in such a short period of time. One word answers are almost more than he can manage in the evenings when he is tired. The facial ticks and other stuttering associated behaviors, like hiding his mouth and fingers in his mouth to hide it as he stutters, have all returned. Those behaviors had completely disappeared over the last year. The rapid return of these dormant behaviors is shocking. Stunning even.
A significant developmental lag has begun. Maybe the worst we've seen in awhile.
So, we do what we do. We contacted his education team and updated them on what is happening. All of his support service individuals are newer members to his team. They haven't ridden one of these waves with us before. They only know our son that is happy-go-lucky; disorganized but hard working; forgetful but sweet. They don't know how deep these regressions can go or the behaviors that he has learned to hide and overcome. So we warned them of what could be coming. We prepare them so they know what to look for.
We reach out to our family and friends in our inner circle. We let them know what we are experiencing. We remind them of what works to support our boy as he struggles against a body that doesn't work with a brain that is trying to catch up to an eight inch growth spurt. We remind them what doesn't work and what will only cause anxiety and delay growth out of this latest lag.
Then we try to find the balance between reminding our boy about what tools he has and what skills he has learned to help him cope while not nagging, not hovering, not taking away his new found independence. We support while trying to avoid dependency. We remind him to "sli-i-i-de" his speech when he jams up. We let him talk with eye contact and without interruption so he doesn't feel pressured which only increases the likelihood that he will block up. We don't finish words and sentences for him. We let him work it out. We acknowledge the struggle but normalize it by keeping it matter of fact. "That was a tough one. Good job sliding through it bud. Remember to breathe. We will wait for you to finish. No rush." We keep life as normal and as consistent as we can. When he needs 500 hugs and tells us a 1,000 times that he loves us, we roll with it and reciprocate because he needs the reassurance right now. We make sure he is eating good nutritious foods and getting lots of rest. Then we wait for things to run their course.
These developmental lags used to send me into an internal panic. I think I feared he wouldn't pull out of them or that he would regress and lose skills. After fourteen years of riding this wave, it still gives me a sick stomach deep down inside. But now I know we have the skills to work him through what he's up against. We have a great relationship with his school and his education team. We have good family and friend supports. My husband and I have a solid relationship and know how to navigate this together now. Our son has built some solid skills to help him work through these lags. He has also made some friendships with kids and adults who will support him for who he is and know his heart.
Unfortunately, based on the amount he is eating, I don't think we are at the end of this crazy growth spurt that seems to have set off this latest developmental lag. At only thirteen years-old, he is already six foot tall with size 14 feet. Hopefully, he will reach his final size and his brain chemistry can finally catch up with all that growth. In the meantime, we have his back and we will support him wherever this goes and however long it takes.
Saturday, May 25, 2019
Resolution
Anyone that has been following this blog for any length of time knows that for thirteen years, our family has been looking for answers. Our son has had a laundry list of symptoms and characteristics that were loosely grouped together under the diagnoses of Attention Deficit Disorder and Neurological Impairment. The result of not being able to name why our son was different has left long term impressions on every member of this family. We have been treating symptoms rather than a condition.
After thirteen years of searching, the technology has finally caught up with us and we have resolution. We have answers!
Because our primary neurologist has moved to research and mapping the genome in search of undiagnosed disorders, he is seeing very few patients any more. Last fall, we were assigned a new Neurology Physicians Assistant. This winter, while meeting with us, she asked us if we would consider repeating our son's genetic testing that was previously completed when he was a year old. Her argument was that genetic testing has come so far in the last decade. She listed the different characteristics that he exhibits and stated that she strongly felt that he had a syndrome of some sort. If we were willing, she would like to see if research had caught up with us. After discussing it as a family, we agreed that it couldn't hurt to try.
So, after four months of waiting, the results have come in and we have answers. And the answers are absolutely, stunningly clear. His diagnosis fits him like the proverbial glove. Our son has a gene mutation known as a CHD3- Related Disorder, or Snijders Blok-Campeau Syndrome. Individuals with this syndrome typically have developmental delays, expressive language differences of unique type (apraxia and dysarthria), macrocephaly (large head size), low muscle tone, joint laxity, and scoliosis. Our son has every single characteristic of this syndrome, including many of the lesser known, less common characteristics.
Every cell in the human body has two CHD3 genes. These genes are extremely important to cell function because they are involved in chromatin function within the cells. It only takes a mutation to one CHD3 gene in one cell to cause major developmental issues in developing fetus. Our son's particular mutation replaced an "A" with a "G". The result was a previously unreported mutation of the CHD3 gene. In other words, he is unique, an original. But we already knew that.
So....
What does knowing mean? Why is it so important to us to be able to put a name to the condition? Why does it matter?
Knowing changed everything. And nothing. The moment the geneticist shared the results with us changed our entire world. And nothing at all. I know that doesn't make sense to most of you but to us that paradox is our absolute truth.
For thirteen years, we asked ourselves if we caused our son's differences. For thirteen years, we questioned every single decision we made because we were operating without an operator's manual. Our decisions were guesses. The news was beautiful and devastating. It brought us peace as it tore at our hearts. My husband and I have shed a lot of happy tears over the last few days.
For a very long time, I felt very alone on this journey. It's the primary reason I started blogging. I never wanted another parent out there living without answers to feel as if he or she were alone. Because if someone else is walking your journey, it's not just you. Someone else out there "gets it". As I have shared in the past, my husband and I didn't always agree on what to do to help our son make progress. My husband isn't an educator. He doesn't speak the language or understand the steps in child development and how they play out. Unfortunately, I do. All too well. And the writing on the wall was very clear to me that without significant interventions, our son was going to quickly, and happily, fall far behind his peers. So I pushed forward. Through the arguments that I was looking for something to be wrong with our son. When he and others told me or implied that our son just needed more time to grow and mature. When we didn't see eye to eye and struggled with our marriage. I persisted because I was a mom and I wasn't going to accept less than the very best for my child. He would learn. He would develop. No one was going to give him less than their best. He deserved it. So thirteen years later, when the geneticist told me that there was a name for why my son was so beautifully different, I cried. Truth be told, I sobbed all the way home. Because I didn't give this to him, I didn't cause it. My extreme morning sickness through all nine months of my pregnancy didn't deprive him of something or traumatize his formation. Because those years of feeling so alone were worth it. Because those years of pushing doctors, pushing therapists, fighting with insurance companies, pushing teachers, educating family members, educating people in his world, mattered. It wasn't imagined. It wasn't exaggerated. It was real. And no mother ever again has to wait thirteen years for answers if her child has this condition.
For thirteen years, I think my husband has secretly carried the burden of blame. My husband is a brilliant man who barely made it through school. He can look at any problem and quickly, succinctly come up with a simple, direct solution. He invents and creates adaptations to existing machines to make them better, more efficient. But he struggled in school. It wasn't his thing. The original genetic test that was completed when our son was a year old showed that both my husband and our son had a small duplication on a section of their 17th chromosome. Because my husband had minor learning issues but none of our son's other "quirks", it was determined that duplication probably wasn't the cause of our son's issues. But secretly, my husband blamed himself. When the results were shared this time and it was clear that neither my husband or I had the gene mutation that our son carried, that it was a mutation unique to him and his development, it was like a burden was lifted. Blame was put aside. Our son was beautifully and wondrously made for a purpose.
As our oldest son prepares to graduate, he is planning the next phases of his life. For two years now, he has been in a rather serious relationship with a lovely young lady that we all love. When he received the news of our son's diagnosis, one of his first responses was to share the results with his young lady. Because they both have food allergies and she has some health issues, it was a relief to learn that they had one less thing to worry about in the future if they decide to start a family together.
The geneticist that we worked with was great. She made sure our son, my husband, and I all clearly understood the results and what they meant. She even had our son summarize for her what he had heard her say and what it meant to him. When asked how he felt about the findings, he responded, "I always wondered why I was different. Now I know. But it's okay because I'm nice and a lot of people aren't even nice people." And then the geneticist cried.
These findings mean nothing at school changes. He continues to receive learning support. We keep pushing him to do his best and work harder. We keep helping each new team understand him and how he learns best. We advocate for him and help him learn to advocate for himself. As he transitions to high school in a year, we start the process of preparing him for greater self-sufficiency. What that means, is yet to be determined. There will be future relationship and family implications but we are far from needing to address that yet. As we have done for thirteen years, we put one foot in front of the other and address each obstacle as it appears.
The name Snijders Blok-Campeau Syndrome, CHD3 Related Disorder, brings resolution. It brings us a degree of peace. It changes nothing. But it changes everything. One thing it doesn't change is how incredibly blessed we were the day the Lord gave us our son. He was wanted. He is needed. He is unique and beautiful in every way. I don't tell him often enough how incredibly lucky I am to be his Momma. God sent him to do beautiful, amazing things. He changes hearts. He spreads love. The world is a better place because he is in it.
After thirteen years of searching, the technology has finally caught up with us and we have resolution. We have answers!
Because our primary neurologist has moved to research and mapping the genome in search of undiagnosed disorders, he is seeing very few patients any more. Last fall, we were assigned a new Neurology Physicians Assistant. This winter, while meeting with us, she asked us if we would consider repeating our son's genetic testing that was previously completed when he was a year old. Her argument was that genetic testing has come so far in the last decade. She listed the different characteristics that he exhibits and stated that she strongly felt that he had a syndrome of some sort. If we were willing, she would like to see if research had caught up with us. After discussing it as a family, we agreed that it couldn't hurt to try.
So, after four months of waiting, the results have come in and we have answers. And the answers are absolutely, stunningly clear. His diagnosis fits him like the proverbial glove. Our son has a gene mutation known as a CHD3- Related Disorder, or Snijders Blok-Campeau Syndrome. Individuals with this syndrome typically have developmental delays, expressive language differences of unique type (apraxia and dysarthria), macrocephaly (large head size), low muscle tone, joint laxity, and scoliosis. Our son has every single characteristic of this syndrome, including many of the lesser known, less common characteristics.
Every cell in the human body has two CHD3 genes. These genes are extremely important to cell function because they are involved in chromatin function within the cells. It only takes a mutation to one CHD3 gene in one cell to cause major developmental issues in developing fetus. Our son's particular mutation replaced an "A" with a "G". The result was a previously unreported mutation of the CHD3 gene. In other words, he is unique, an original. But we already knew that.
So....
What does knowing mean? Why is it so important to us to be able to put a name to the condition? Why does it matter?
Knowing changed everything. And nothing. The moment the geneticist shared the results with us changed our entire world. And nothing at all. I know that doesn't make sense to most of you but to us that paradox is our absolute truth.
For thirteen years, we asked ourselves if we caused our son's differences. For thirteen years, we questioned every single decision we made because we were operating without an operator's manual. Our decisions were guesses. The news was beautiful and devastating. It brought us peace as it tore at our hearts. My husband and I have shed a lot of happy tears over the last few days.
For a very long time, I felt very alone on this journey. It's the primary reason I started blogging. I never wanted another parent out there living without answers to feel as if he or she were alone. Because if someone else is walking your journey, it's not just you. Someone else out there "gets it". As I have shared in the past, my husband and I didn't always agree on what to do to help our son make progress. My husband isn't an educator. He doesn't speak the language or understand the steps in child development and how they play out. Unfortunately, I do. All too well. And the writing on the wall was very clear to me that without significant interventions, our son was going to quickly, and happily, fall far behind his peers. So I pushed forward. Through the arguments that I was looking for something to be wrong with our son. When he and others told me or implied that our son just needed more time to grow and mature. When we didn't see eye to eye and struggled with our marriage. I persisted because I was a mom and I wasn't going to accept less than the very best for my child. He would learn. He would develop. No one was going to give him less than their best. He deserved it. So thirteen years later, when the geneticist told me that there was a name for why my son was so beautifully different, I cried. Truth be told, I sobbed all the way home. Because I didn't give this to him, I didn't cause it. My extreme morning sickness through all nine months of my pregnancy didn't deprive him of something or traumatize his formation. Because those years of feeling so alone were worth it. Because those years of pushing doctors, pushing therapists, fighting with insurance companies, pushing teachers, educating family members, educating people in his world, mattered. It wasn't imagined. It wasn't exaggerated. It was real. And no mother ever again has to wait thirteen years for answers if her child has this condition.
For thirteen years, I think my husband has secretly carried the burden of blame. My husband is a brilliant man who barely made it through school. He can look at any problem and quickly, succinctly come up with a simple, direct solution. He invents and creates adaptations to existing machines to make them better, more efficient. But he struggled in school. It wasn't his thing. The original genetic test that was completed when our son was a year old showed that both my husband and our son had a small duplication on a section of their 17th chromosome. Because my husband had minor learning issues but none of our son's other "quirks", it was determined that duplication probably wasn't the cause of our son's issues. But secretly, my husband blamed himself. When the results were shared this time and it was clear that neither my husband or I had the gene mutation that our son carried, that it was a mutation unique to him and his development, it was like a burden was lifted. Blame was put aside. Our son was beautifully and wondrously made for a purpose.
As our oldest son prepares to graduate, he is planning the next phases of his life. For two years now, he has been in a rather serious relationship with a lovely young lady that we all love. When he received the news of our son's diagnosis, one of his first responses was to share the results with his young lady. Because they both have food allergies and she has some health issues, it was a relief to learn that they had one less thing to worry about in the future if they decide to start a family together.
The geneticist that we worked with was great. She made sure our son, my husband, and I all clearly understood the results and what they meant. She even had our son summarize for her what he had heard her say and what it meant to him. When asked how he felt about the findings, he responded, "I always wondered why I was different. Now I know. But it's okay because I'm nice and a lot of people aren't even nice people." And then the geneticist cried.
These findings mean nothing at school changes. He continues to receive learning support. We keep pushing him to do his best and work harder. We keep helping each new team understand him and how he learns best. We advocate for him and help him learn to advocate for himself. As he transitions to high school in a year, we start the process of preparing him for greater self-sufficiency. What that means, is yet to be determined. There will be future relationship and family implications but we are far from needing to address that yet. As we have done for thirteen years, we put one foot in front of the other and address each obstacle as it appears.
The name Snijders Blok-Campeau Syndrome, CHD3 Related Disorder, brings resolution. It brings us a degree of peace. It changes nothing. But it changes everything. One thing it doesn't change is how incredibly blessed we were the day the Lord gave us our son. He was wanted. He is needed. He is unique and beautiful in every way. I don't tell him often enough how incredibly lucky I am to be his Momma. God sent him to do beautiful, amazing things. He changes hearts. He spreads love. The world is a better place because he is in it.
Sunday, February 3, 2019
Worry
Raising children is a stressful, beautiful experience. There is so much joy. There is also so much to worry about. Are they healthy? Are the growing and developing on target? Are they kind and resourceful and hard working? Do they have friends? Are they making good choices?
My worries with my oldest son were so different, and in hindsight, so trivial in comparison to my worries with my youngest son. My oldest was always smart and athletic and kind spirited. Things came easily to him. He made friends easily. He was very active and involved in sports until he reached an age when the sports became more aggressive than his nature. He loved hanging out with his buddies and being active but didn't care for the aggression and drive required to continue at his age level. I never worried about him getting involved in things he shouldn't because he chose friends wisely and tended to take kids under his wing who were in need of kindness. We talked and shared and spent time together so I knew his thoughts, his friends, and his decisions. He's a hard worker, civic minded volunteer, and reliable member of his community. Raising him to eighteen has been pretty simple. A couple heartaches and bumps along the way but all minimal and navigable. Our experiences with him have been very "typical".
Raising his brother has been one continuous worry. The things I worry about for him I rarely worried about for my oldest son. For example, birthday parties. Whether for him or for classmates, they leave me with a headache and half a sick stomach. There is nothing my youngest loves more than a party. Life is a gigantic source of celebration for him. Any opportunity to dance, laugh, and cheer is a good time for him.
Every year, he plans a series of birthday events for himself. He insists on a party with friends. He also chooses a special cake that he and I design and make together. Finally, he plans a family party for his family and neighbors. Without these three components, he is absolutely heartbroken. He loves a party!
When planning the friend party, we struggle to identify a handful of friends to invite. He considers everyone a friend. He loves everyone. Unfortunately, it's hard to identify kids that genuinely feel the same about him. As a result, he rarely has more than one or two friends come to his "events". He builds up the events in his head, creating this amazing time, with all these people. When the time comes and only one or two arrive, he still has an amazing time. He loves a party, even if it's with one or two. But my heart aches for him. Don't these kids get that behind the awkward, goofy, clumsy kid is the best friend they will ever have. He is loyal and loving to a fault. He forgives and loves unconditionally. Look past the exterior. He is the essence of love.
Conversely, it is equally stressful for him to be invited to birthday parties. I can count on one hand how many birthday parties he has been invited to for classmates. Each time, it is stressful to think through the logistics. Many of the parties involved physical activities like swimming, skating, etc. With his lack of safety awareness and gross motor coordination issues, that can be challenging. Factor in his large size and it makes it even more obvious how uncoordinated he is. Factor in his lack of social awareness and it gives me serious concern but we've always tried to make it work. As he gets older, we worry about the motivation for inviting him. Was he invited because they really want him there? Was he invited because every child was invited, even the ones the child didn't want invited. Or was he invited to be the butt of some mean kid's joke?
Today, we attended a roller skating party for a classmate. Yeah. A roller skating party. Dear Lord. You have NO idea how many prayers I said in anticipation of this party. In the end, it was as terribly bad and as amazingly good as I could have imagined. We asked him how he wanted to play this. We planned on either staying or leaving based on how things went and what he wanted us to do. At almost thirteen, we have pretty honest conversations about these things. He wanted us to come in and help him get his skates. So we went in; got the skates; laced him up and tied in (because he still has issues with proper shoe tying); and stood him up. He promptly fell really hard twice before taking a single step. It took both of us to keep him upright. He's almost six foot tall now. That's a lot of kid to keep upright on wheels.
The boy who invited him came over to check on him and encouraged him to go to the "practice area" until he felt more comfortable on his wheels. He even helped my husband get our son over the that area. It was incredibly kind and helped soothe some of my concerns. The boy seemed to genuinely like our son. He seemed like a very sweet boy. Thank you Lord.
After practicing, watching (away from the group), and making his way back over to us, he decided to take the skates off and take a break for a little bit. We encouraged our son to go join the group over in the birthday area. He found the birthday mom and she got him some pizza. It didn't take long for teenage boys to come in search of food. Our son came over and told us we could leave. He felt comfortable. We told him we were headed for groceries five minutes away and he could call if he needed us. I felt very anxious leaving but knew it was the right thing to do. Please Lord let everyone be kind to him. Please Lord don't let him hurt himself too badly. I feared broken bones. I feared a concussion.
When we came back, we found a very happy boy. He had made it out to the main skating floor and even did the limbo. As my husband helped our son get out of his skates, I had a chance to talk to a family member. She said her nephew told his mom that he wanted to invite our son because our son doesn't get invited to many parties and people are mean to him but he's his friend and he doesn't care what other people think. When our son went to say goodbye, the young man was so kind about saying goodbye and thanks for coming. Thank you Lord for kindness!
This boy's kindness may have been a small thing for him but it was HUGE for our son. He felt included. He felt "normal". This boy plays football and sports and is well liked at school. Including our son meant everything to him. It's all he talked about for weeks leading up to the party. It's all he talked about all day today. We have a lot of bruises and a stoved shoulder but that is minor in comparison to the happiness of the day. The bruises will heal. Ibuprofen and Tylenol will help the shoulder. A happy heart is worth it all.
This week our youngest turns thirteen. His friend party is coming up and I know of one child who is coming. That's okay. The kiddo coming is a lifelong, true friend. She, his Dad, and I will make it a great time. We will laugh and enjoy ourselves. The next night, we will celebrate his brother's performance at District Chorus (because of course, the first time he auditions, he gets accepted). Saturday, we will celebrate his birthday surrounded by our close circle of neighbors and family who "get him" and love him and support him through everything that he does.
Continue to stretch and grow. We love you and support you every step of the way. Along the way, may the Lord continue to put people in your path who will help you find love and support and growth. And may you continue to help them stretch and grow as well.
My worries with my oldest son were so different, and in hindsight, so trivial in comparison to my worries with my youngest son. My oldest was always smart and athletic and kind spirited. Things came easily to him. He made friends easily. He was very active and involved in sports until he reached an age when the sports became more aggressive than his nature. He loved hanging out with his buddies and being active but didn't care for the aggression and drive required to continue at his age level. I never worried about him getting involved in things he shouldn't because he chose friends wisely and tended to take kids under his wing who were in need of kindness. We talked and shared and spent time together so I knew his thoughts, his friends, and his decisions. He's a hard worker, civic minded volunteer, and reliable member of his community. Raising him to eighteen has been pretty simple. A couple heartaches and bumps along the way but all minimal and navigable. Our experiences with him have been very "typical".
Raising his brother has been one continuous worry. The things I worry about for him I rarely worried about for my oldest son. For example, birthday parties. Whether for him or for classmates, they leave me with a headache and half a sick stomach. There is nothing my youngest loves more than a party. Life is a gigantic source of celebration for him. Any opportunity to dance, laugh, and cheer is a good time for him.
Every year, he plans a series of birthday events for himself. He insists on a party with friends. He also chooses a special cake that he and I design and make together. Finally, he plans a family party for his family and neighbors. Without these three components, he is absolutely heartbroken. He loves a party!
When planning the friend party, we struggle to identify a handful of friends to invite. He considers everyone a friend. He loves everyone. Unfortunately, it's hard to identify kids that genuinely feel the same about him. As a result, he rarely has more than one or two friends come to his "events". He builds up the events in his head, creating this amazing time, with all these people. When the time comes and only one or two arrive, he still has an amazing time. He loves a party, even if it's with one or two. But my heart aches for him. Don't these kids get that behind the awkward, goofy, clumsy kid is the best friend they will ever have. He is loyal and loving to a fault. He forgives and loves unconditionally. Look past the exterior. He is the essence of love.
Conversely, it is equally stressful for him to be invited to birthday parties. I can count on one hand how many birthday parties he has been invited to for classmates. Each time, it is stressful to think through the logistics. Many of the parties involved physical activities like swimming, skating, etc. With his lack of safety awareness and gross motor coordination issues, that can be challenging. Factor in his large size and it makes it even more obvious how uncoordinated he is. Factor in his lack of social awareness and it gives me serious concern but we've always tried to make it work. As he gets older, we worry about the motivation for inviting him. Was he invited because they really want him there? Was he invited because every child was invited, even the ones the child didn't want invited. Or was he invited to be the butt of some mean kid's joke?
Today, we attended a roller skating party for a classmate. Yeah. A roller skating party. Dear Lord. You have NO idea how many prayers I said in anticipation of this party. In the end, it was as terribly bad and as amazingly good as I could have imagined. We asked him how he wanted to play this. We planned on either staying or leaving based on how things went and what he wanted us to do. At almost thirteen, we have pretty honest conversations about these things. He wanted us to come in and help him get his skates. So we went in; got the skates; laced him up and tied in (because he still has issues with proper shoe tying); and stood him up. He promptly fell really hard twice before taking a single step. It took both of us to keep him upright. He's almost six foot tall now. That's a lot of kid to keep upright on wheels.
The boy who invited him came over to check on him and encouraged him to go to the "practice area" until he felt more comfortable on his wheels. He even helped my husband get our son over the that area. It was incredibly kind and helped soothe some of my concerns. The boy seemed to genuinely like our son. He seemed like a very sweet boy. Thank you Lord.
After practicing, watching (away from the group), and making his way back over to us, he decided to take the skates off and take a break for a little bit. We encouraged our son to go join the group over in the birthday area. He found the birthday mom and she got him some pizza. It didn't take long for teenage boys to come in search of food. Our son came over and told us we could leave. He felt comfortable. We told him we were headed for groceries five minutes away and he could call if he needed us. I felt very anxious leaving but knew it was the right thing to do. Please Lord let everyone be kind to him. Please Lord don't let him hurt himself too badly. I feared broken bones. I feared a concussion.
When we came back, we found a very happy boy. He had made it out to the main skating floor and even did the limbo. As my husband helped our son get out of his skates, I had a chance to talk to a family member. She said her nephew told his mom that he wanted to invite our son because our son doesn't get invited to many parties and people are mean to him but he's his friend and he doesn't care what other people think. When our son went to say goodbye, the young man was so kind about saying goodbye and thanks for coming. Thank you Lord for kindness!
This boy's kindness may have been a small thing for him but it was HUGE for our son. He felt included. He felt "normal". This boy plays football and sports and is well liked at school. Including our son meant everything to him. It's all he talked about for weeks leading up to the party. It's all he talked about all day today. We have a lot of bruises and a stoved shoulder but that is minor in comparison to the happiness of the day. The bruises will heal. Ibuprofen and Tylenol will help the shoulder. A happy heart is worth it all.
This week our youngest turns thirteen. His friend party is coming up and I know of one child who is coming. That's okay. The kiddo coming is a lifelong, true friend. She, his Dad, and I will make it a great time. We will laugh and enjoy ourselves. The next night, we will celebrate his brother's performance at District Chorus (because of course, the first time he auditions, he gets accepted). Saturday, we will celebrate his birthday surrounded by our close circle of neighbors and family who "get him" and love him and support him through everything that he does.
Continue to stretch and grow. We love you and support you every step of the way. Along the way, may the Lord continue to put people in your path who will help you find love and support and growth. And may you continue to help them stretch and grow as well.
Saturday, September 1, 2018
Special Needs Moms Are Only Human
Being a parent, and doing it well, is one of the hardest jobs you will ever have. Those that have experienced it and lived to tell the tale and claim it was easy are either exceedingly blessed or far enough removed from the experience that they have forgotten the headaches, heartaches, and fear. It is important, exhausting, thankless work. But probably the most important undertaking of your life. You are raising future adults, citizens, and family members. Is there anything more important than that?
Parents of children with special needs have an added dimension of strain in an already challenging experience. If you are raising a child with special needs, you have probably read everything you can get your hands on about your child's condition or symptoms. You have read the latest research, the latest fads, the latest "cure" or therapy that promises miracles. If you are raising a child with special needs, you have probably come to the realization that no matter how much you read, nothing accurately describes your child and his/her condition because at the end of the day, he/she is a unique individual with a unique genetic make up and personality and disposition. When you have a child that fits no specific diagnosis, syndrome, or condition but instead displays symptoms of many different, yet interrelated diagnoses, there is an added dimension of challenge. Your rule book is unwritten. The directions were not included on your particular model.
If you've followed this blog for any amount of time, you know our challenge has always been meeting the needs of a child that has been diagnosed with global developmental delays, ADD, neurological impairment, gross motor and fine motor coordination disorders, expressive speech/language disorder, and disfluency. He has average intelligence but tests and performs on the very bottom level of average in the school setting, even with supports in place. He is HIGHLY social but has many autistic/high functioning spectrum behaviors/tendencies. Although Sensory Integration Disorder has not been formally recognized by the latest Diagnostic and Statistical Model of Mental Disorders, as a stand alone disorder, a SI Disorder would most accurately reflect our son's issues. One neurologist once described him as "straussy", after the research performed by Alfred Strauss on brain disorders and learning disabilities.
Our most challenging time of year is ALWAYS the start of a new school year. It's a transition. The month of July is mellow with little large group interaction, no defined timeframes, and I'm home consistently to provide full attention and assistance. Once August hits, I'm now focused on a new room full of little people that my son doesn't know, yet feels some jealousy towards. He now has daily interaction with lots of people, many of whom make him feel bad about himself. In addition, our fall schedule is beyond busy and has much more consistent, clearly defined timeframes that must be met. Transition and change is always hard for our son but this much transition with the added anxiety of social and educational expectations is especially challenging for him.
Having no clear "rule book" for parenting can make life interesting. If your child's behavior is causing you to feel frustrated, angry, or on the verge of "out of control", you are advised to be sure the child is in a safe place and give yourself a timeout to regain your composure. In our case, our son will not allow that. If he senses that you are upset, even if he is out of control, he will not leave you alone to regain control. When you are upset, he has an uncontrollable need to touch you and talk to you, even as he physically, mentally, and verbally spins in circles. For example, the other morning, our son woke up and nothing was working. His brain synapses were not firing correctly. He couldn't take his pills, brush his teeth, get breakfast, or complete a single step from beginning to end without abandoning the task, repeating the same nonsense phrases over and over, and crying. We needed him to take his pills so his brain could start engaging itself again but that simple task was out of his control. He could not complete that simple task. He was getting more and more emotional and explosive. The situation wasn't going anywhere. And our son wouldn't give me space to recoup. He compulsively needed to touch me, hug me, and repeat himself. I needed space. But he wouldn't let me have it. This was the moment when my husband or I typically step in and relieve the other so we can take a break and relieve our frustration from the moment. Unfortunately, my husband was already at work for the day. I was running solo.
I'd like to share something inspiring and tell you something amazing I did or something beautiful I said that made the moment better and solved the problem. But at the end of the day, I'm human. And I blew it. Big time.
It was nearly the end of the first full week of school. We had been teaching an extremely young group in an old, un-air conditioned brick building in 100 degree heat index, humid weather. I had spent weeks moving a classroom I didn't pack into a building that had been abandoned by the district a few years prior. We had ceiling leaks, poor electrical grids, mice, and limited access to the building prior to opening. I tried to stay positive, crack jokes, and keeping us going. My oldest was preparing for his senior year and the college application process had already started. Our community had flooded three times in the last month and my fire fighter husband had a scary close call on a water rescue call. He was rarely home, helping his community while our own home had water in our basement for the first time since it had been built. We had survived band camp, our yearly week long fundraiser for the fire company at a local fair, and our yearly weekend fundraiser for our fire company at our local festival. Marching band season is in full swing and I have two marching together this year. To say my plate is full is an understatement.
So when our son woke up, spinning and crying, and incapable of moving forward in even simple ways for the day, I lost it. I started yelling. I was demanding. I did all the things that I KNOW do not work when his brain is out of sync.
Earlier that month, I had received a major award from my employer in recognition of my work with young children. And all I could think as I heard myself doing all the wrong things with my own son was "Some award winning teacher. Yep. You're really amazing aren't you."
My oldest son, who was also very frustrated with his brother and his inability to get in sync, was able to take a breath, step back, then step in and re-engage him positively. He was the one who took the baby steps to start his brother's brain stepping in the right direction. He was the one who was able to step in and stop the downward spiral his brother was riding on. My seventeen year old son. Not me.
So... what's the take away here?
Special needs mom have special circumstances and special challenges but at the end of the day, they are still human. They are going to make mistakes. They are going to fail. All parents, even the good ones, do sometimes.
Our mistakes provide the opportunity to model humility. To model contriteness. To model how to apologize when you are wrong. To model how to re-connect with someone you love that you have had a disagreement with. Mistakes can have beautiful moments too. They don't feel that way but they do.
So, I sent my oldest off to school. My youngest and I slowly put our day back together, together. I took him to school. Then bawled the whole way to work. I re-fueled my soul from the energy of my classroom of beautiful, innocent, happy, little ones. Then I came home and finished the healing from the morning ugliness. That broken morning has led to some very open honest conversations between my son and I about the direction we need to start going in terms of him growing up, stepping up, and taking responsibility for himself, even when it's hard. It's allowed conversations about emotional boundaries and how we treat the ones we love, even when in crisis. The broken moment has led to some good moments. They don't feel beautiful but they may lead to beautiful moments eventually.
Although I felt like a complete failure as a mother that morning, I need to allow myself to have bad moments too. I'm human and I'm flawed. I'm going to fail.
Besides, I raised that amazing seventeen year old that stepped in and was able to walk through the ugly to his own beautiful moment. So I must not be a complete failure.
Parents of children with special needs have an added dimension of strain in an already challenging experience. If you are raising a child with special needs, you have probably read everything you can get your hands on about your child's condition or symptoms. You have read the latest research, the latest fads, the latest "cure" or therapy that promises miracles. If you are raising a child with special needs, you have probably come to the realization that no matter how much you read, nothing accurately describes your child and his/her condition because at the end of the day, he/she is a unique individual with a unique genetic make up and personality and disposition. When you have a child that fits no specific diagnosis, syndrome, or condition but instead displays symptoms of many different, yet interrelated diagnoses, there is an added dimension of challenge. Your rule book is unwritten. The directions were not included on your particular model.
If you've followed this blog for any amount of time, you know our challenge has always been meeting the needs of a child that has been diagnosed with global developmental delays, ADD, neurological impairment, gross motor and fine motor coordination disorders, expressive speech/language disorder, and disfluency. He has average intelligence but tests and performs on the very bottom level of average in the school setting, even with supports in place. He is HIGHLY social but has many autistic/high functioning spectrum behaviors/tendencies. Although Sensory Integration Disorder has not been formally recognized by the latest Diagnostic and Statistical Model of Mental Disorders, as a stand alone disorder, a SI Disorder would most accurately reflect our son's issues. One neurologist once described him as "straussy", after the research performed by Alfred Strauss on brain disorders and learning disabilities.
Our most challenging time of year is ALWAYS the start of a new school year. It's a transition. The month of July is mellow with little large group interaction, no defined timeframes, and I'm home consistently to provide full attention and assistance. Once August hits, I'm now focused on a new room full of little people that my son doesn't know, yet feels some jealousy towards. He now has daily interaction with lots of people, many of whom make him feel bad about himself. In addition, our fall schedule is beyond busy and has much more consistent, clearly defined timeframes that must be met. Transition and change is always hard for our son but this much transition with the added anxiety of social and educational expectations is especially challenging for him.
Having no clear "rule book" for parenting can make life interesting. If your child's behavior is causing you to feel frustrated, angry, or on the verge of "out of control", you are advised to be sure the child is in a safe place and give yourself a timeout to regain your composure. In our case, our son will not allow that. If he senses that you are upset, even if he is out of control, he will not leave you alone to regain control. When you are upset, he has an uncontrollable need to touch you and talk to you, even as he physically, mentally, and verbally spins in circles. For example, the other morning, our son woke up and nothing was working. His brain synapses were not firing correctly. He couldn't take his pills, brush his teeth, get breakfast, or complete a single step from beginning to end without abandoning the task, repeating the same nonsense phrases over and over, and crying. We needed him to take his pills so his brain could start engaging itself again but that simple task was out of his control. He could not complete that simple task. He was getting more and more emotional and explosive. The situation wasn't going anywhere. And our son wouldn't give me space to recoup. He compulsively needed to touch me, hug me, and repeat himself. I needed space. But he wouldn't let me have it. This was the moment when my husband or I typically step in and relieve the other so we can take a break and relieve our frustration from the moment. Unfortunately, my husband was already at work for the day. I was running solo.
I'd like to share something inspiring and tell you something amazing I did or something beautiful I said that made the moment better and solved the problem. But at the end of the day, I'm human. And I blew it. Big time.
It was nearly the end of the first full week of school. We had been teaching an extremely young group in an old, un-air conditioned brick building in 100 degree heat index, humid weather. I had spent weeks moving a classroom I didn't pack into a building that had been abandoned by the district a few years prior. We had ceiling leaks, poor electrical grids, mice, and limited access to the building prior to opening. I tried to stay positive, crack jokes, and keeping us going. My oldest was preparing for his senior year and the college application process had already started. Our community had flooded three times in the last month and my fire fighter husband had a scary close call on a water rescue call. He was rarely home, helping his community while our own home had water in our basement for the first time since it had been built. We had survived band camp, our yearly week long fundraiser for the fire company at a local fair, and our yearly weekend fundraiser for our fire company at our local festival. Marching band season is in full swing and I have two marching together this year. To say my plate is full is an understatement.
So when our son woke up, spinning and crying, and incapable of moving forward in even simple ways for the day, I lost it. I started yelling. I was demanding. I did all the things that I KNOW do not work when his brain is out of sync.
Earlier that month, I had received a major award from my employer in recognition of my work with young children. And all I could think as I heard myself doing all the wrong things with my own son was "Some award winning teacher. Yep. You're really amazing aren't you."
My oldest son, who was also very frustrated with his brother and his inability to get in sync, was able to take a breath, step back, then step in and re-engage him positively. He was the one who took the baby steps to start his brother's brain stepping in the right direction. He was the one who was able to step in and stop the downward spiral his brother was riding on. My seventeen year old son. Not me.
So... what's the take away here?
Special needs mom have special circumstances and special challenges but at the end of the day, they are still human. They are going to make mistakes. They are going to fail. All parents, even the good ones, do sometimes.
Our mistakes provide the opportunity to model humility. To model contriteness. To model how to apologize when you are wrong. To model how to re-connect with someone you love that you have had a disagreement with. Mistakes can have beautiful moments too. They don't feel that way but they do.
So, I sent my oldest off to school. My youngest and I slowly put our day back together, together. I took him to school. Then bawled the whole way to work. I re-fueled my soul from the energy of my classroom of beautiful, innocent, happy, little ones. Then I came home and finished the healing from the morning ugliness. That broken morning has led to some very open honest conversations between my son and I about the direction we need to start going in terms of him growing up, stepping up, and taking responsibility for himself, even when it's hard. It's allowed conversations about emotional boundaries and how we treat the ones we love, even when in crisis. The broken moment has led to some good moments. They don't feel beautiful but they may lead to beautiful moments eventually.
Although I felt like a complete failure as a mother that morning, I need to allow myself to have bad moments too. I'm human and I'm flawed. I'm going to fail.
Besides, I raised that amazing seventeen year old that stepped in and was able to walk through the ugly to his own beautiful moment. So I must not be a complete failure.
Monday, May 21, 2018
The Recipe for Neurological Misfires
I have written a lot about meltdowns in the past. Fortunately with time, maturation, and a lot of behavioral training, our son rarely has a true meltdown these days. He may start into one but has developed the ability to pull himself out of it and calm himself down before reaching the point of complete loss of control. He has made so much progress. I look at his behavior in comparison to his same age peers and truthfully, sometimes it's hard to see any differences. His emotional, physical, and social growth have been amazing.
Instead of a meltdown, these days we are more likely to experience what I think of as a neurological misfire. The biochemistry of his brain sends misfires that don't allow it to function the way that it should to function successfully. He can't shut his brain down. Imagine someone very tired yet unable to sleep. Making irrational statements that have no basis in logic. Incapable of following simple directions. Overly emotional and stuck in a cycle of the same behaviors, same words, same actions. Repetitive and without logical end. No longer crying, yelling, losing control. Just stuck in a thought that can't be brought to an end.
Because our lives are driven preventatively in an effort to head off these moments, they don't happen very often but sometimes life and circumstances have a way of forcing them on you. Sometimes life hands you the prefect recipe for a neurological misfire.
We have lost some important loved ones in our life over the last six months. In December, we lost a grandmother figure, Ms. Sunny. She was a volunteer at our fire company for decades. At the age of 91, she died in a car crash bringing to an end a beautiful life. This loss had a big impact on our youngest son. Every month at our fire company breakfast, he helped her keep the juices and fruits stocked and ready for the breakfast patrons. As a retired school teacher, she had unflagging patience and support for our son. He loved working with her and looked forward to her hugs and teasing. Her memorial service was held recently bringing the loss back. This Saturday was the first fire company breakfast since her memorial service was held.
This month, we also lost my husband's great-uncle Ralph who was also a grandfather figure. His loss happened quickly after a sudden heart attack and quick decline. He also often helped out at the fire company breakfasts. Our son loved teasing him and talking with him. His memorial service and funeral were this past Thursday.
I knew those losses had an impact on our son but events like those and the resulting feelings, thoughts, etc, display themselves differently with our youngest. We don't get classic stages of grieving that most people experience. It comes out sideways through behavior.
Yesterday, our son had the opportunity to perform for the PMEA District 8 band performance at Knoebel's Grove, a local amusement resort. His middle school band was performing and then enjoying the day in the park. It was a great time. The kids had fun performing; ate a quick lunch; then went off to enjoy themselves riding rides. Our son spent the day riding rides with our oldest son's girlfriend, her mom, and myself. We had a fun day together. He was so happy.
He was also very over stimulated. As we walked into the park, he was on his toes, spinning in circles. He was running into people and pointing and clapping. In spite of the excitement, he held it together beautifully.
We had set 4 pm as our official time to leave because his Dad had a fire company chief's meeting at 6 pm and we needed to be home in time for him to clean up and head to the meeting. That was understood and wasn't an issue. At 3:30 pm, we gave our son the heads up that we were planning to leave in a half hour and asked him what our final choices would be for the day. He decided that he wanted a drink and to ride the Skloosh, a large water ride. We agreed; said goodbye to his brother's girlfriend and her family; and headed towards those two final stops. Just then, it started to rain. Big, fat drops, that quickly turned into a downpour. We stepped underneath the overhang of an ice cream stand but large drops could still reach us. This was no big deal because we were already soaking wet from riding another large water ride earlier. Those large drops hitting him were a major source of physical stimulation. He couldn't stand that they were hitting him. He was practically standing on top of a stranger in an attempt to get out of them. Fortunately, she was very tolerant and patient. When the rain slowed and we started to leave, without riding the Skloosh, he seemed fine. A bit over excited, but fine.
As the evening progressed, he seemed okay. No real problems. No concerns. Fine.
Then bedtime hit. We followed our routine. We read a story together. I kissed him goodnight and gave him hugs. Our usual routine. He hopped out of bed and chased me down the steps declaring, I need another kiss. I told him it was time to turn it off and go to bed. A few minutes later, he's back. He needs a kiss. He needs a hug. He's spinning. Go to bed. You don't need to sleep but you must be upstairs in bed. A few minutes later, he's back. Same routine. Trying to start discussions. I need a kiss. I need a hug. You didn't hug me. He's spinning. It continues. I'm losing my cool. Becoming frustrated. He just won't stop.
He can't stop. He's having a neurological misfire.
For over two decades, I have successfully taught kids. I'm good at what I do. Very good. But none of that matters with our son. None. Of. It.
Part of the reason that I have been successful in the classroom is because I can feel the energy of my kids. Many times, I know without them speaking, what is going on with them. I can feel if they are happy, sad, too excited, not excited enough, etc. and I feed off that energy and use it. I am also very logic driven. These are the expectations. These are the rules. Here's the routine and what we do. I am consistent and firm but loving. It works. But none of that matters with our son.
What works with 99% of kids in the classroom does not apply to his biochemistry. It doesn't work when his brain misfires. Because I feel his energy. It works against me. He becomes over stimulated, over excited, and I feel it. I have to work to keep my energy level. I see him spinning, can feel him slipping out of control, but I can't help him rope it back in. Logic does not apply. Consequences do not matter. He is stuck in his thought patterns and can't pull out and he pulls me into that energy with him.
I get stuck in logic. Why can't this child just follow simple directions? Why can't he just listen?
Because he's have a neurological misfire.
He's stuck in sensation and energy. I'm stuck in logic. They don't go together. I can't seem to reach him.
That's why I have the most amazing husband in the world.
He calmly steps in. He's not effected by our son's energy to the degree that I am. He uses his own calm energy to help calm our son's energy, not even attempting to use logic to reign him back in. He just rides out the crazy wave with our son and lets him work through it. It's like riding a tornado as it uses up it's own energy. He waits it out; slowly calms it down; works it through.
I can't do that for our son. But he can.
It's 3 am and I can't shut it down. It's my last week of school. Today is our Foundry Day at the park with my classroom and their parents. It's their graduation ceremony and day of fun. At the end of the day, I have my evaluation meeting with my supervisor. Tuesday, a camera crew is coming to my classroom to record some footage of what we do. There's a lot going on in my world. A lot of transitions. A lot to prepare for. I lot to plan for. Unfortunately, with a son like ours, none of that matters. Our needs do not come first. You can't grieve for yourself. You can't stress for yourself. His needs always take precedence because he leaves you with no option or alternative. If I am honest, I resent that.
*sigh*
But he can't help the brain that he was born with. It's a beautiful brain in so many ways. But it's a brain that is very hard to live with. At 2 am, I finally put together all the pieces of why he is spinning and I feel guilty. And tired. And worn down by life with his brain.
But today is a new day. And we move forward as a family and as a team. And we keep working on helping him understand and control that brain. Meltdowns rarely happen these days. Eventually neurological misfires with reduce in frequency as well. We'll get there. Because we get tired but we get tired together and we don't give up. That's what families do.
Instead of a meltdown, these days we are more likely to experience what I think of as a neurological misfire. The biochemistry of his brain sends misfires that don't allow it to function the way that it should to function successfully. He can't shut his brain down. Imagine someone very tired yet unable to sleep. Making irrational statements that have no basis in logic. Incapable of following simple directions. Overly emotional and stuck in a cycle of the same behaviors, same words, same actions. Repetitive and without logical end. No longer crying, yelling, losing control. Just stuck in a thought that can't be brought to an end.
Because our lives are driven preventatively in an effort to head off these moments, they don't happen very often but sometimes life and circumstances have a way of forcing them on you. Sometimes life hands you the prefect recipe for a neurological misfire.
We have lost some important loved ones in our life over the last six months. In December, we lost a grandmother figure, Ms. Sunny. She was a volunteer at our fire company for decades. At the age of 91, she died in a car crash bringing to an end a beautiful life. This loss had a big impact on our youngest son. Every month at our fire company breakfast, he helped her keep the juices and fruits stocked and ready for the breakfast patrons. As a retired school teacher, she had unflagging patience and support for our son. He loved working with her and looked forward to her hugs and teasing. Her memorial service was held recently bringing the loss back. This Saturday was the first fire company breakfast since her memorial service was held.
This month, we also lost my husband's great-uncle Ralph who was also a grandfather figure. His loss happened quickly after a sudden heart attack and quick decline. He also often helped out at the fire company breakfasts. Our son loved teasing him and talking with him. His memorial service and funeral were this past Thursday.
I knew those losses had an impact on our son but events like those and the resulting feelings, thoughts, etc, display themselves differently with our youngest. We don't get classic stages of grieving that most people experience. It comes out sideways through behavior.
Yesterday, our son had the opportunity to perform for the PMEA District 8 band performance at Knoebel's Grove, a local amusement resort. His middle school band was performing and then enjoying the day in the park. It was a great time. The kids had fun performing; ate a quick lunch; then went off to enjoy themselves riding rides. Our son spent the day riding rides with our oldest son's girlfriend, her mom, and myself. We had a fun day together. He was so happy.
He was also very over stimulated. As we walked into the park, he was on his toes, spinning in circles. He was running into people and pointing and clapping. In spite of the excitement, he held it together beautifully.
We had set 4 pm as our official time to leave because his Dad had a fire company chief's meeting at 6 pm and we needed to be home in time for him to clean up and head to the meeting. That was understood and wasn't an issue. At 3:30 pm, we gave our son the heads up that we were planning to leave in a half hour and asked him what our final choices would be for the day. He decided that he wanted a drink and to ride the Skloosh, a large water ride. We agreed; said goodbye to his brother's girlfriend and her family; and headed towards those two final stops. Just then, it started to rain. Big, fat drops, that quickly turned into a downpour. We stepped underneath the overhang of an ice cream stand but large drops could still reach us. This was no big deal because we were already soaking wet from riding another large water ride earlier. Those large drops hitting him were a major source of physical stimulation. He couldn't stand that they were hitting him. He was practically standing on top of a stranger in an attempt to get out of them. Fortunately, she was very tolerant and patient. When the rain slowed and we started to leave, without riding the Skloosh, he seemed fine. A bit over excited, but fine.
As the evening progressed, he seemed okay. No real problems. No concerns. Fine.
Then bedtime hit. We followed our routine. We read a story together. I kissed him goodnight and gave him hugs. Our usual routine. He hopped out of bed and chased me down the steps declaring, I need another kiss. I told him it was time to turn it off and go to bed. A few minutes later, he's back. He needs a kiss. He needs a hug. He's spinning. Go to bed. You don't need to sleep but you must be upstairs in bed. A few minutes later, he's back. Same routine. Trying to start discussions. I need a kiss. I need a hug. You didn't hug me. He's spinning. It continues. I'm losing my cool. Becoming frustrated. He just won't stop.
He can't stop. He's having a neurological misfire.
For over two decades, I have successfully taught kids. I'm good at what I do. Very good. But none of that matters with our son. None. Of. It.
Part of the reason that I have been successful in the classroom is because I can feel the energy of my kids. Many times, I know without them speaking, what is going on with them. I can feel if they are happy, sad, too excited, not excited enough, etc. and I feed off that energy and use it. I am also very logic driven. These are the expectations. These are the rules. Here's the routine and what we do. I am consistent and firm but loving. It works. But none of that matters with our son.
What works with 99% of kids in the classroom does not apply to his biochemistry. It doesn't work when his brain misfires. Because I feel his energy. It works against me. He becomes over stimulated, over excited, and I feel it. I have to work to keep my energy level. I see him spinning, can feel him slipping out of control, but I can't help him rope it back in. Logic does not apply. Consequences do not matter. He is stuck in his thought patterns and can't pull out and he pulls me into that energy with him.
I get stuck in logic. Why can't this child just follow simple directions? Why can't he just listen?
Because he's have a neurological misfire.
He's stuck in sensation and energy. I'm stuck in logic. They don't go together. I can't seem to reach him.
That's why I have the most amazing husband in the world.
He calmly steps in. He's not effected by our son's energy to the degree that I am. He uses his own calm energy to help calm our son's energy, not even attempting to use logic to reign him back in. He just rides out the crazy wave with our son and lets him work through it. It's like riding a tornado as it uses up it's own energy. He waits it out; slowly calms it down; works it through.
I can't do that for our son. But he can.
It's 3 am and I can't shut it down. It's my last week of school. Today is our Foundry Day at the park with my classroom and their parents. It's their graduation ceremony and day of fun. At the end of the day, I have my evaluation meeting with my supervisor. Tuesday, a camera crew is coming to my classroom to record some footage of what we do. There's a lot going on in my world. A lot of transitions. A lot to prepare for. I lot to plan for. Unfortunately, with a son like ours, none of that matters. Our needs do not come first. You can't grieve for yourself. You can't stress for yourself. His needs always take precedence because he leaves you with no option or alternative. If I am honest, I resent that.
*sigh*
But he can't help the brain that he was born with. It's a beautiful brain in so many ways. But it's a brain that is very hard to live with. At 2 am, I finally put together all the pieces of why he is spinning and I feel guilty. And tired. And worn down by life with his brain.
But today is a new day. And we move forward as a family and as a team. And we keep working on helping him understand and control that brain. Meltdowns rarely happen these days. Eventually neurological misfires with reduce in frequency as well. We'll get there. Because we get tired but we get tired together and we don't give up. That's what families do.
Thursday, February 22, 2018
My Questions Are Different
I'm going to start tonight's blogpost by stating that I do not have adequate words to express what I am trying to say. I don't know that there are words to express how I am feeling and what I am thinking. But I feel the need to try. I'm going to fumble through it because I feel like there is a real need to try. So I have one request. If you continue to read tonight's post, please read it with an open mind and an open heart. Read it with the understanding that my heart is genuine and my intentions are true. If you can't do that, or if you are unwilling to listen and possibly open yourself to uncomfortable feelings, ideas, and questions, then please stop reading now. This post may not be meant for you.
Our country is struggling. Our communities are hurting. Our children and families are scared and angry.
Today, we received an all call message from my son's school. Threats had allegedly been made by a student and police and school officials were addressing the issue and investigating but they felt there was no need for concern. They felt the situation was under control. In light of the numerous school shootings across our country, my response may surprise you. I felt calm. It gave me pause. It made me say a prayer. It made me send my oldest son a text that simply said "Fun phone call from school. (Please understand that we are fluent in sarcasm as a language at our house.) Love you. Keep eyes and ears open. Be smart. Be safe." Then I put it aside, moved on with my day, and resumed activities in my classroom with my own students.
Why? Why that response?
Simple. Well... not really. But simple for me.
We believe in a God everlasting. We understand that this life is out of our control to a very large degree. We can do our part to make it the best that it can be but ultimately, we have no control. An out of control bus could run us over tomorrow. A crazed maniac at Wal-Mart could shank us on a Saturday morning shopping trip. We could be diagnosed with cancer. Life doesn't come with a guarantee. But we are solid in the understanding that when our time comes, we know where we are going. We know that we will be re-united one day with one another. That truth is solid in the core of who we are in our family.
My dearest love, friend, and co-worker lost her beloved son in an auto accident 10 days after we started working together. It was a loss that tore apart the fabric of her life. It was a devastation that I can only begin to fathom. Over the last three years, we have traversed this journey of loss and acceptance together. In my heart and soul, I believe that we were brought together to be there for one another. Our connection is eerie. We know what the other is thinking and can anticipate the other's response without speaking. That can't be by chance.
Her loss taught me some incredibly important lessons. One, every day is precious. Love your family without limits. Tell them. Show them. Be there. Be present. Be involved. You don't know if you will get another chance. Second, loss that deep doesn't end. Ever. It is without limits. But you can move forward. You can live again. You can laugh again. You can feel joy again. It takes time. A long time. Finally, you need to breathe and take things as they come. You have to prioritize what is important to you and what is not. If you don't value it, then don't give it your time and energy.
In our home, we discuss everything. We debate. We present opposing points of view. We get on a soapbox. Words are important and we share them with one another. As events have unfolded in our country, it has given us lots to discuss. I've tried very hard to do a lot of listening, both to my family and to those outside my home. I've heard people's solutions. People's fears. People's anger. People's blame. I've heard it all. We've discussed it all.
My youngest son has little to say on current events. These ideas and concepts and too distant to him. Too abstract. He's much more passionate about the fact that kids talk back to his teachers and he thinks that's disrespectful. He hates that they disrupt his learning.
My oldest son is very much my son. He is very clear in his thinking. Why worry about what you can't control? It's not going to change the outcome. If someone wants to do serious harm to others, they will find a way. In the meantime, if there is a chance to escape, do so. If not, he doesn't intend to die hiding. If he has to go, he's going to do it standing up for others.
As a mother, that makes my heart stutter. It gives me genuine pain. As a human being, as a protector and advocate of children, it gives me pride. Stand up. Please Lord, don't make the moment arise. Protect my son from that moment because I know his heart is true. If you know my oldest son, you know his heart is true. He is one of the best people I have ever met. That's not me speaking as his mother. That's the truth.
So now you understand my response to today's events. Well, maybe not understand but you can comprehend why I think the way that I think.
As I've listened and read and attempted to learn and hear from others about issues unfolding in our country, I'm not hearing the questions that keep coming up in my mind. Maybe it's my career path. Maybe it's the wiring in my brain. Maybe others are just afraid to voice what I am thinking.
So here it is.
For eighteen years, I taught court committed female teenage offenders. In other words, I taught history, health, and life skills to teenage girls in lock up. It was exhausting. It was heart wrenching. It was frustrating. And I loved it. I loved them. Yep. You heard that right. I loved them. I loved their hearts. I loved who they had the potential to become if life had taken them down different roads. For eighteen years, I heard the stories of the worst things that humans could do to other humans. Mothers who left grown men have sex with their preschool age daughter to score a line of coke. Mothers who sold their daughters to pimps to get drugs. Women who threw their daughters out and called them whores when their current boyfriend sexually abused her and she finally worked up the courage to tell the one person who should have protected her. And worse. Far worse. Stories that still eat at my soul and I've been away from it for three years. Stories that I will never forget or want to forget. I took them sled riding for gym class. I taught them history as I braided their hair to calm them down to keep them from jumping the girl in the next class who gave them dirty looks. I told them funny stories about my son with special needs because they have a soft spot for the under dog. Because they've always been the under dog. Always.
They are the disposable children. The children no one wants. The children no one keeps. They were my girls. And I loved them.
These are the kids that grow up to be school shooters. They are the cast aways.
How do they become school shooters? What is the turning point? When is enough enough or too much too much? Why does no one see it coming?
Everyone wants to blame these kids. Hear me. PLEASE hear me. They are responsible for their choices and the consequences of their choices. I'm no bleeding heart liberal here. People are responsible for their choices. But ALL people are responsible for their choices. All people.
The system that allows disposable children to bounce from foster family to foster family like a puppy from the pound. The system that releases these children into the world without support or skills because they maxed out of the system due to age. The system that ties the hands of schools by not funding what matters. Not enough support staff. Not enough school psychologists. Not enough guidance counselors. Not enough training on de-escalation skills and the effects of trauma on children and their learning. The parents on both sides of the issues that don't teach their children that their choices have consequences. Period. If you bully someone, treat them like dirt, push them aside, degrade them, harass them, there are ultimately going to be consequences. On the other hand, when you finally decide that violence is an option and a choice, there will and SHOULD be serious and immediate consequences.
There is lots broken and lots of blame to go around. But that's not what I care about.
I do NOT have the answers. I wouldn't pretend to. Armed guards. Armed teachers. Metal detectors. Corporal punishment. Lock the little #@*@$ up. Ban guns. More guns. I don't know. These aren't simple issues. There are no quick fixes to this. Things didn't get this broken over night. They won't get fixed over night. It's going to take a generation or more to heal this. If it can be healed.
So here's what I do know.
Kids AND adults need to understand that words DO matter. They have consequences. That starts at the top. When world leaders act like spoiled children throwing tantrums and name calling, it matters. When the adults in a child's life, belittle and degrade others, that is heard. It is seen. It is processed. Kids miss nothing. You are teaching them how to treat others. Do as I say not as I do is crap. Kids do what they see. What is modeled. What is reinforced. So do better. Be better.
Befriend the loveless. Volunteer with the unloved and unwanted. Get out in your communities and care. What is your talent, skill, gift? Use it to help others. Work at a soup kitchen. Volunteer as a fireman. Fundraise for an organization. Teach Sunday school. Clean up the roads and parks in your town. Join Big Brothers/Big Sisters. Coach a sports team. Call your local school that you love to blast on social media and find out how you can help. What can you do to be part of the solution? Lots of armchair critics are quick to blast, criticize, and gossip. What are your solutions? Real life, off your behind solutions.
Now I'm going to step away from this and go read my youngest son a bedtime story. And tomorrow, I'll go back into the trenches and give 100% to my students and come home and love my family. Because life doesn't stop moving forward.
Sometimes, we just need to stop and breathe. Breathe in slow. Breath out slower.
Our country is struggling. Our communities are hurting. Our children and families are scared and angry.
Today, we received an all call message from my son's school. Threats had allegedly been made by a student and police and school officials were addressing the issue and investigating but they felt there was no need for concern. They felt the situation was under control. In light of the numerous school shootings across our country, my response may surprise you. I felt calm. It gave me pause. It made me say a prayer. It made me send my oldest son a text that simply said "Fun phone call from school. (Please understand that we are fluent in sarcasm as a language at our house.) Love you. Keep eyes and ears open. Be smart. Be safe." Then I put it aside, moved on with my day, and resumed activities in my classroom with my own students.
Why? Why that response?
Simple. Well... not really. But simple for me.
We believe in a God everlasting. We understand that this life is out of our control to a very large degree. We can do our part to make it the best that it can be but ultimately, we have no control. An out of control bus could run us over tomorrow. A crazed maniac at Wal-Mart could shank us on a Saturday morning shopping trip. We could be diagnosed with cancer. Life doesn't come with a guarantee. But we are solid in the understanding that when our time comes, we know where we are going. We know that we will be re-united one day with one another. That truth is solid in the core of who we are in our family.
My dearest love, friend, and co-worker lost her beloved son in an auto accident 10 days after we started working together. It was a loss that tore apart the fabric of her life. It was a devastation that I can only begin to fathom. Over the last three years, we have traversed this journey of loss and acceptance together. In my heart and soul, I believe that we were brought together to be there for one another. Our connection is eerie. We know what the other is thinking and can anticipate the other's response without speaking. That can't be by chance.
Her loss taught me some incredibly important lessons. One, every day is precious. Love your family without limits. Tell them. Show them. Be there. Be present. Be involved. You don't know if you will get another chance. Second, loss that deep doesn't end. Ever. It is without limits. But you can move forward. You can live again. You can laugh again. You can feel joy again. It takes time. A long time. Finally, you need to breathe and take things as they come. You have to prioritize what is important to you and what is not. If you don't value it, then don't give it your time and energy.
In our home, we discuss everything. We debate. We present opposing points of view. We get on a soapbox. Words are important and we share them with one another. As events have unfolded in our country, it has given us lots to discuss. I've tried very hard to do a lot of listening, both to my family and to those outside my home. I've heard people's solutions. People's fears. People's anger. People's blame. I've heard it all. We've discussed it all.
My youngest son has little to say on current events. These ideas and concepts and too distant to him. Too abstract. He's much more passionate about the fact that kids talk back to his teachers and he thinks that's disrespectful. He hates that they disrupt his learning.
My oldest son is very much my son. He is very clear in his thinking. Why worry about what you can't control? It's not going to change the outcome. If someone wants to do serious harm to others, they will find a way. In the meantime, if there is a chance to escape, do so. If not, he doesn't intend to die hiding. If he has to go, he's going to do it standing up for others.
As a mother, that makes my heart stutter. It gives me genuine pain. As a human being, as a protector and advocate of children, it gives me pride. Stand up. Please Lord, don't make the moment arise. Protect my son from that moment because I know his heart is true. If you know my oldest son, you know his heart is true. He is one of the best people I have ever met. That's not me speaking as his mother. That's the truth.
So now you understand my response to today's events. Well, maybe not understand but you can comprehend why I think the way that I think.
As I've listened and read and attempted to learn and hear from others about issues unfolding in our country, I'm not hearing the questions that keep coming up in my mind. Maybe it's my career path. Maybe it's the wiring in my brain. Maybe others are just afraid to voice what I am thinking.
So here it is.
For eighteen years, I taught court committed female teenage offenders. In other words, I taught history, health, and life skills to teenage girls in lock up. It was exhausting. It was heart wrenching. It was frustrating. And I loved it. I loved them. Yep. You heard that right. I loved them. I loved their hearts. I loved who they had the potential to become if life had taken them down different roads. For eighteen years, I heard the stories of the worst things that humans could do to other humans. Mothers who left grown men have sex with their preschool age daughter to score a line of coke. Mothers who sold their daughters to pimps to get drugs. Women who threw their daughters out and called them whores when their current boyfriend sexually abused her and she finally worked up the courage to tell the one person who should have protected her. And worse. Far worse. Stories that still eat at my soul and I've been away from it for three years. Stories that I will never forget or want to forget. I took them sled riding for gym class. I taught them history as I braided their hair to calm them down to keep them from jumping the girl in the next class who gave them dirty looks. I told them funny stories about my son with special needs because they have a soft spot for the under dog. Because they've always been the under dog. Always.
They are the disposable children. The children no one wants. The children no one keeps. They were my girls. And I loved them.
These are the kids that grow up to be school shooters. They are the cast aways.
How do they become school shooters? What is the turning point? When is enough enough or too much too much? Why does no one see it coming?
Everyone wants to blame these kids. Hear me. PLEASE hear me. They are responsible for their choices and the consequences of their choices. I'm no bleeding heart liberal here. People are responsible for their choices. But ALL people are responsible for their choices. All people.
The system that allows disposable children to bounce from foster family to foster family like a puppy from the pound. The system that releases these children into the world without support or skills because they maxed out of the system due to age. The system that ties the hands of schools by not funding what matters. Not enough support staff. Not enough school psychologists. Not enough guidance counselors. Not enough training on de-escalation skills and the effects of trauma on children and their learning. The parents on both sides of the issues that don't teach their children that their choices have consequences. Period. If you bully someone, treat them like dirt, push them aside, degrade them, harass them, there are ultimately going to be consequences. On the other hand, when you finally decide that violence is an option and a choice, there will and SHOULD be serious and immediate consequences.
There is lots broken and lots of blame to go around. But that's not what I care about.
I do NOT have the answers. I wouldn't pretend to. Armed guards. Armed teachers. Metal detectors. Corporal punishment. Lock the little #@*@$ up. Ban guns. More guns. I don't know. These aren't simple issues. There are no quick fixes to this. Things didn't get this broken over night. They won't get fixed over night. It's going to take a generation or more to heal this. If it can be healed.
So here's what I do know.
Kids AND adults need to understand that words DO matter. They have consequences. That starts at the top. When world leaders act like spoiled children throwing tantrums and name calling, it matters. When the adults in a child's life, belittle and degrade others, that is heard. It is seen. It is processed. Kids miss nothing. You are teaching them how to treat others. Do as I say not as I do is crap. Kids do what they see. What is modeled. What is reinforced. So do better. Be better.
Befriend the loveless. Volunteer with the unloved and unwanted. Get out in your communities and care. What is your talent, skill, gift? Use it to help others. Work at a soup kitchen. Volunteer as a fireman. Fundraise for an organization. Teach Sunday school. Clean up the roads and parks in your town. Join Big Brothers/Big Sisters. Coach a sports team. Call your local school that you love to blast on social media and find out how you can help. What can you do to be part of the solution? Lots of armchair critics are quick to blast, criticize, and gossip. What are your solutions? Real life, off your behind solutions.
Now I'm going to step away from this and go read my youngest son a bedtime story. And tomorrow, I'll go back into the trenches and give 100% to my students and come home and love my family. Because life doesn't stop moving forward.
Sometimes, we just need to stop and breathe. Breathe in slow. Breath out slower.
Subscribe to:
Posts (Atom)