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.
Saturday, September 1, 2018
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.
Friday, January 19, 2018
To the Parents of "Normal" Children
Dear Parent of "Normal" Children,
Tonight's blog post is written specifically to you. For two decades, I have worked to educate and advocate for children that most people see as disposable. The kids that have been passed from family to family through the foster care system. The kids who have been suspended and expelled from school after school. The kids that are economically disadvantaged. Those are my kids. But tonight, I write to you, not as a teacher or an advocate. Instead, I write to you as a mother. A mother that needs you.
Many children who are only mildly special like my son look like everyone else. They "look normal". You can't see the neurological impairment; the synapses that don't fire as required; the lack of development in the areas of the brain that allow people to read other people's body language; or the poor neural connections that affect motor planning and sensory processing. Those deficiencies aren't apparent when looking at children with mild special needs. It is their behaviors that give away their differences. They often act "weird" or "different" or seem "gross". They chew their clothes, fingers, and pencils. They eat non-food items. They may drool or stutter. They may have repetitive or obsessive behaviors that annoy or scare their peers. They stand too close and talk too loud. They fidget and squirm. They may not understand the facial expressions and tone of voice of their peers. They may interrupt or intrude or disrupt. These behaviors make them stand out as different and therefore not acceptable to their pre-teen counter-parts. This makes them targets for ridicule and derision. They are excluded and mocked. Because their behaviors are often annoying or disruptive or frustrating, that may also make them the target for adults who just want them to fit in and act normal. After all, they look normal. They need to act normal. Right?
So... what do we do? The parents of the kids who are only mildly special. What do we do? What can we do?
We advocate for our children. Teach others what our child's normal looks like. We educate parents and professionals like you about what you can do to help. We offer suggestions. Speak up when we have questions or need help or need clarification. Be THAT parent when we need to be. It's not always comfortable to step up, speak out, and question but if we don't, who will? We are our child's voice. To be effective, we should always start from a place of love. Always try to start from a place of educating others, teaching others about our child. When you feel as if your child is hurting or lacking what is needed to be successful, that takes real strength. Sometimes we don't feel as if we have that strength. We are tired. A lot.
We offer our children what they lack. If they lack executive functioning skills, we offer them methods to organize themselves and their lives. We offer structure and consistency. We offer boundaries and routines. We provide unconditional love and support, even when it's not easy. If they lack social skills, we teach and model those skills and provide opportunities to practice them with others in a loving supportive environment. We take them out of their comfort zone and introduce them to those outside their circle. That's where it gets challenging. Really challenging. It's not a nice place out there for kids like ours.
So, what can't we do for our children? Well, unfortunately, there are a lot of things we can't do for them.
We can't help them make friends. We can introduce them to situations and experiences that provide opportunities to make friends. But we can't make friends for them.
We can't keep them safe when they aren't in our care. We can practice and rehearse and review safe behavior. But it will be up to them and their caretakers to remember that they lack coordination skills and basic safety awareness and take the steps needed to compensate and keep them safe.
We can't protect them from ridicule and emotional hurt. Unfortunately, learning how to navigate those ugly experiences in life is a normal part of growing up. All children face it at some point in their lives. The amount of ridicule and emotional hurt that they face compared to their "normal peers is not, well, normal. They face greater criticism, greater harassment, greater negativity on a daily basis than the average young person.
When my child, my beautiful, loving, kind spirited child, who wears his heart on his sleeve and loves EVERYONE, comes home and tells me that people tell him he's gross and disgusting and stupid...... I can't help him. I can't make that better. I can't problem solve that. I can't fix that. I can't plan or strategize or research that. I can't.
That's where I need your help. You. The parent of a typical, average, "normal" child. We need YOUR help. If you are reading this and your child is the light of your life, your pride and joy, your world, then I need you. I need your help because my son is those things to me too.
Teach your children to be kind. Teach your children to be patient and empathetic and understanding. Teach them that different isn't "gross". Teach him that the child who is too loud, too close, too different is someone to love too. That child could be the best friend your child could ever make. If you teach your child to befriend a child like mine, he will have found pure gold. Someone who will have his back forever. Someone who will accept him exactly as he is. Someone who will do anything and everything to make him feel good about himself. Can you say the same about your child? Can your child be that for someone else? Can he make someone feel like they are special, not because they are "special" but because they are an amazing person and they are proud to call them friend? Can you say that about your child?
How do you teach your child to be that kind of person? Model it. Be kind to others. Don't talk about other people and gossip about them. Don't make fun of other people and criticize their short comings. Let them see you building others up. Let them see you befriending those in need. Be the person you want them to be. Talk about being a friend to those who need a friend. Not once or twice but often. Get uncomfortable. Reach out to someone that is different. Try it. You just might find you feel better about yourself and the world you're living in. By helping me, you just may be helping yourself... and your child.
Tonight's blog post is written specifically to you. For two decades, I have worked to educate and advocate for children that most people see as disposable. The kids that have been passed from family to family through the foster care system. The kids who have been suspended and expelled from school after school. The kids that are economically disadvantaged. Those are my kids. But tonight, I write to you, not as a teacher or an advocate. Instead, I write to you as a mother. A mother that needs you.
Many children who are only mildly special like my son look like everyone else. They "look normal". You can't see the neurological impairment; the synapses that don't fire as required; the lack of development in the areas of the brain that allow people to read other people's body language; or the poor neural connections that affect motor planning and sensory processing. Those deficiencies aren't apparent when looking at children with mild special needs. It is their behaviors that give away their differences. They often act "weird" or "different" or seem "gross". They chew their clothes, fingers, and pencils. They eat non-food items. They may drool or stutter. They may have repetitive or obsessive behaviors that annoy or scare their peers. They stand too close and talk too loud. They fidget and squirm. They may not understand the facial expressions and tone of voice of their peers. They may interrupt or intrude or disrupt. These behaviors make them stand out as different and therefore not acceptable to their pre-teen counter-parts. This makes them targets for ridicule and derision. They are excluded and mocked. Because their behaviors are often annoying or disruptive or frustrating, that may also make them the target for adults who just want them to fit in and act normal. After all, they look normal. They need to act normal. Right?
So... what do we do? The parents of the kids who are only mildly special. What do we do? What can we do?
We advocate for our children. Teach others what our child's normal looks like. We educate parents and professionals like you about what you can do to help. We offer suggestions. Speak up when we have questions or need help or need clarification. Be THAT parent when we need to be. It's not always comfortable to step up, speak out, and question but if we don't, who will? We are our child's voice. To be effective, we should always start from a place of love. Always try to start from a place of educating others, teaching others about our child. When you feel as if your child is hurting or lacking what is needed to be successful, that takes real strength. Sometimes we don't feel as if we have that strength. We are tired. A lot.
We offer our children what they lack. If they lack executive functioning skills, we offer them methods to organize themselves and their lives. We offer structure and consistency. We offer boundaries and routines. We provide unconditional love and support, even when it's not easy. If they lack social skills, we teach and model those skills and provide opportunities to practice them with others in a loving supportive environment. We take them out of their comfort zone and introduce them to those outside their circle. That's where it gets challenging. Really challenging. It's not a nice place out there for kids like ours.
So, what can't we do for our children? Well, unfortunately, there are a lot of things we can't do for them.
We can't help them make friends. We can introduce them to situations and experiences that provide opportunities to make friends. But we can't make friends for them.
We can't keep them safe when they aren't in our care. We can practice and rehearse and review safe behavior. But it will be up to them and their caretakers to remember that they lack coordination skills and basic safety awareness and take the steps needed to compensate and keep them safe.
We can't protect them from ridicule and emotional hurt. Unfortunately, learning how to navigate those ugly experiences in life is a normal part of growing up. All children face it at some point in their lives. The amount of ridicule and emotional hurt that they face compared to their "normal peers is not, well, normal. They face greater criticism, greater harassment, greater negativity on a daily basis than the average young person.
When my child, my beautiful, loving, kind spirited child, who wears his heart on his sleeve and loves EVERYONE, comes home and tells me that people tell him he's gross and disgusting and stupid...... I can't help him. I can't make that better. I can't problem solve that. I can't fix that. I can't plan or strategize or research that. I can't.
That's where I need your help. You. The parent of a typical, average, "normal" child. We need YOUR help. If you are reading this and your child is the light of your life, your pride and joy, your world, then I need you. I need your help because my son is those things to me too.
Teach your children to be kind. Teach your children to be patient and empathetic and understanding. Teach them that different isn't "gross". Teach him that the child who is too loud, too close, too different is someone to love too. That child could be the best friend your child could ever make. If you teach your child to befriend a child like mine, he will have found pure gold. Someone who will have his back forever. Someone who will accept him exactly as he is. Someone who will do anything and everything to make him feel good about himself. Can you say the same about your child? Can your child be that for someone else? Can he make someone feel like they are special, not because they are "special" but because they are an amazing person and they are proud to call them friend? Can you say that about your child?
How do you teach your child to be that kind of person? Model it. Be kind to others. Don't talk about other people and gossip about them. Don't make fun of other people and criticize their short comings. Let them see you building others up. Let them see you befriending those in need. Be the person you want them to be. Talk about being a friend to those who need a friend. Not once or twice but often. Get uncomfortable. Reach out to someone that is different. Try it. You just might find you feel better about yourself and the world you're living in. By helping me, you just may be helping yourself... and your child.
Saturday, November 25, 2017
Helping a Rigid Learner Process Life
Many who read my blog, and many who know our son personally, assume that he has been diagnosed with high functioning autism or an autism spectrum disorder. Over the last eleven years, he has been given many different diagnoses because none of the currently available diagnosed disorders accurately apply to him. He has been labeled as having global developmental delays, developmental motor coordination disorder, expressive language disorder, hypotonia, coordination disorder, Attention Deficit Disorder, learning disorder, auditory processing disorder, and neurological impairment. Because he is very social, he has never met the qualifying characteristics for an autism spectrum disorder.
Recently, I have started reading research that is being conducted on females on the autism spectrum. Some new studies report that the qualifying characteristics of autism may present themselves differently in females than in males which may account for their under-representation within the disorder. Similar findings have been found in research when it comes to females and ADD and males when it comes to depression. In each condition, gender may play a role in how the individual tends to display the characteristics of that particular disorder. I have also started reading some clinical research on the characteristics of rigid learners as I think it accurately describes some of my son's learning styles and tendencies.
Regardless, accurate diagnosis or not, we are raising a child who is impulsive, unorganized, resistant to change, and prone to internalize his concerns and anxieties. When life is rolling along as expected, all routines and events proceeding as planned, our life is easy, pleasant, even fun. Unfortunately, life doesn't roll along without bumps and pitfalls along the way. It's full of unexpected twists and turns. As in all families, these are the moments that present us with challenges to address as individuals and as a family.
For most emotionally mature individuals, when life throws something at them that is unexpected, they stop; assess the situation; choose a course of action; and proceed. Unfortunately, when you are dealing with someone who is not yet emotionally mature, or who is rigid in their processing, the stumbling block can become insurmountable. He becomes mired in the moment without the ability to assess, choose, and move forward with a course of action. Our son has this tendency. Minor changes in schedule; minor changes in how he imagined or expected something to be; or minor changes in how he planned something, can cause him to shut down resulting in behavior or emotional strain that must be addressed. For example, I received a call from the school forewarning me that the music director had changed the afternoon schedule to allow the kids time to return to their homerooms to hand in their Chromebooks before dismissing for the day. A thoughtful change on the director's part. Unfortunately, this change had not been discussed with the students in advance so our son hadn't had time to process how this would impact him. He become stuck in that moment of trying to process the change. He repetitively stated that he couldn't go get his Chromebook and return it because he would be late to meet his brother (who meets him after school and drives him home - who has no time set in stone - who wouldn't leave without him). It didn't matter how logical their arguments to try to convince him that it was okay. He would have time. He could go get his Chromebook. He would make it back in time. It wasn't a big deal. The rationalizing, explaining, and soothing continued to no avail. Our son cried and spun (literally) and repeated himself over and over. This new teaching team had never witnessed this side of our son and had no idea how to help him move forward. They wanted to let us know that our oldest son was getting our youngest son in an agitated state. I assured them that our oldest son was unfortunately more than used to this and more than capable of coping with the situation. One of the blessings/curses of growing up with a brother like his is an increased ability to deal with an irrational child.
My husband has been having migraines for over twelve days now. He has lost his sense of taste, except for bitter. As a result, an MRI has been ordered for this coming week. Over the last two weeks, our son has been incredibly impulsive and disorganized in his thinking. His defiant behavior has also increased. I have deliberately checked my attitude and my response to his behavior. I've also attempted to make time for the two of us to do activities together that he enjoys. My husband was questioning this morning what could be the cause of this new change in behavior. (We often problem solve together when we notice new trends or concerns in behavior) I told him I wanted to get some one-on-one time to talk to our son because I felt the behavior was rooted in his concern for my husband and his undiagnosed medical condition. Because our son tends to internalize his worries, he doesn't vocalize the things that are upsetting him. Instead, we tend to see behaviors that indicate something is wrong. By chance, while I was getting ready for the day, my son wandered into my room. I casually asked him if he had any questions or concerns about how his Dad has been feeling lately. Wow! Open the floodgates! His biggest worry? Did his Dad have cancer? He saw on an old episode of ER that a guy had to get an MRI of his head and it showed that he had cancer and was going to die. Wow! All that has been living in that brain that didn't know what to do with it. So we talked. We talked about what has been going on; how Dad has been feeling; what it could be; what they would do to test for a cause; what we would do as a family to deal with it. It was a good moment. We followed it up by going out on the river fishing, just the three of us. The day has been much smoother since then. Is it a magic cure? No. But it gives us insight into what may be driving the recent changes in behavior (besides those pre-teen hormones).
Because our son is quickly approaching his teen years; because he no longer wants us to "work with him"; because he just wants us to be his parents and not his teachers, we are going to discuss options with his neurology team at this week's appointment. Is there someone in our area who works with kids on social skills training? Is there someone in the area that works with kids on processing how he feels and putting those feelings into positive action? We are quickly approaching the point in life where he wants us to be his parents who love him and hold him accountable and guide him but do not "help him" or "teach him" as we have had to do in the past. We now need to outsource that duty to someone dependable. In the meantime, we will encourage an open dialogue with him to help him find his voice. His empathy skills are already phenomenal. His sense-confidence is light years ahead of where it should be for his age and circumstances. His understanding of himself and how he works, is growing stronger year by year. He is becoming a member of his own treatment team. I pray we find the right person to help us guide him on that journey. I pray we continue to have the patience and endurance to guide him as he grows. Some days are easy. Some days are hard and we don't feel up to the challenge. Our roles are changing as he grows. I pray we recognize when it is time to step forward, time to step back, or time to walk alongside our young man as he grows.
Recently, I have started reading research that is being conducted on females on the autism spectrum. Some new studies report that the qualifying characteristics of autism may present themselves differently in females than in males which may account for their under-representation within the disorder. Similar findings have been found in research when it comes to females and ADD and males when it comes to depression. In each condition, gender may play a role in how the individual tends to display the characteristics of that particular disorder. I have also started reading some clinical research on the characteristics of rigid learners as I think it accurately describes some of my son's learning styles and tendencies.
Regardless, accurate diagnosis or not, we are raising a child who is impulsive, unorganized, resistant to change, and prone to internalize his concerns and anxieties. When life is rolling along as expected, all routines and events proceeding as planned, our life is easy, pleasant, even fun. Unfortunately, life doesn't roll along without bumps and pitfalls along the way. It's full of unexpected twists and turns. As in all families, these are the moments that present us with challenges to address as individuals and as a family.
For most emotionally mature individuals, when life throws something at them that is unexpected, they stop; assess the situation; choose a course of action; and proceed. Unfortunately, when you are dealing with someone who is not yet emotionally mature, or who is rigid in their processing, the stumbling block can become insurmountable. He becomes mired in the moment without the ability to assess, choose, and move forward with a course of action. Our son has this tendency. Minor changes in schedule; minor changes in how he imagined or expected something to be; or minor changes in how he planned something, can cause him to shut down resulting in behavior or emotional strain that must be addressed. For example, I received a call from the school forewarning me that the music director had changed the afternoon schedule to allow the kids time to return to their homerooms to hand in their Chromebooks before dismissing for the day. A thoughtful change on the director's part. Unfortunately, this change had not been discussed with the students in advance so our son hadn't had time to process how this would impact him. He become stuck in that moment of trying to process the change. He repetitively stated that he couldn't go get his Chromebook and return it because he would be late to meet his brother (who meets him after school and drives him home - who has no time set in stone - who wouldn't leave without him). It didn't matter how logical their arguments to try to convince him that it was okay. He would have time. He could go get his Chromebook. He would make it back in time. It wasn't a big deal. The rationalizing, explaining, and soothing continued to no avail. Our son cried and spun (literally) and repeated himself over and over. This new teaching team had never witnessed this side of our son and had no idea how to help him move forward. They wanted to let us know that our oldest son was getting our youngest son in an agitated state. I assured them that our oldest son was unfortunately more than used to this and more than capable of coping with the situation. One of the blessings/curses of growing up with a brother like his is an increased ability to deal with an irrational child.
My husband has been having migraines for over twelve days now. He has lost his sense of taste, except for bitter. As a result, an MRI has been ordered for this coming week. Over the last two weeks, our son has been incredibly impulsive and disorganized in his thinking. His defiant behavior has also increased. I have deliberately checked my attitude and my response to his behavior. I've also attempted to make time for the two of us to do activities together that he enjoys. My husband was questioning this morning what could be the cause of this new change in behavior. (We often problem solve together when we notice new trends or concerns in behavior) I told him I wanted to get some one-on-one time to talk to our son because I felt the behavior was rooted in his concern for my husband and his undiagnosed medical condition. Because our son tends to internalize his worries, he doesn't vocalize the things that are upsetting him. Instead, we tend to see behaviors that indicate something is wrong. By chance, while I was getting ready for the day, my son wandered into my room. I casually asked him if he had any questions or concerns about how his Dad has been feeling lately. Wow! Open the floodgates! His biggest worry? Did his Dad have cancer? He saw on an old episode of ER that a guy had to get an MRI of his head and it showed that he had cancer and was going to die. Wow! All that has been living in that brain that didn't know what to do with it. So we talked. We talked about what has been going on; how Dad has been feeling; what it could be; what they would do to test for a cause; what we would do as a family to deal with it. It was a good moment. We followed it up by going out on the river fishing, just the three of us. The day has been much smoother since then. Is it a magic cure? No. But it gives us insight into what may be driving the recent changes in behavior (besides those pre-teen hormones).
Because our son is quickly approaching his teen years; because he no longer wants us to "work with him"; because he just wants us to be his parents and not his teachers, we are going to discuss options with his neurology team at this week's appointment. Is there someone in our area who works with kids on social skills training? Is there someone in the area that works with kids on processing how he feels and putting those feelings into positive action? We are quickly approaching the point in life where he wants us to be his parents who love him and hold him accountable and guide him but do not "help him" or "teach him" as we have had to do in the past. We now need to outsource that duty to someone dependable. In the meantime, we will encourage an open dialogue with him to help him find his voice. His empathy skills are already phenomenal. His sense-confidence is light years ahead of where it should be for his age and circumstances. His understanding of himself and how he works, is growing stronger year by year. He is becoming a member of his own treatment team. I pray we find the right person to help us guide him on that journey. I pray we continue to have the patience and endurance to guide him as he grows. Some days are easy. Some days are hard and we don't feel up to the challenge. Our roles are changing as he grows. I pray we recognize when it is time to step forward, time to step back, or time to walk alongside our young man as he grows.
Wednesday, October 4, 2017
Fighting For Success When It Doesn't Seem To Be Enough
We seem to be living in an ever increasingly angry and violent world. Many people are looking for big answers to big, complex problems. I recognize that those types of solutions are above my pay grade. As a result, I will continue to do my part, one child at a time, one parent at a time, one day at a time. It's all I can do to help a seemingly lost world.
Monday through Friday, my day starts at 4:45 AM. I leave my house by 6:15 AM, most days before my children's feet have even hit the first floor of our home. With construction in all directions, my daily commute has stretched to a lovely hour one way in a little Hyundai Sonata. It gives me lots of time to think, and plan, and analyze. Sometimes too much time.
I think about my children. How much I love them. How proud I am of the strong, healthy, happy, young men that they seem to be becoming. How I need to help them continue to grow and develop. How I need to push them to do better, be better, aim higher.
I think about my other children. The children in my classroom. Who is too quiet? Who isn't quiet enough? Who needs extra hugs? Who always seems to want a hug? Who needs to be more active? Who needs to be less active? Are my methods helping? Are my methods hurting? Am I pushing them too hard? Am I pushing them enough? What can I do to push them to do better, be better, aim higher?
I think about my parents. The parents of the children in my classroom. Who do I know by name? Who don't I know at all? Who seems to want help? Who seems to want me to leave them alone? How can I support them more? How can I communicate more effectively? Do they have any idea how much I absolutely love their child just the way he or she is? Do they know the child that I know in my classroom? Do they share their days with each other? Do they share how they feel about this crazy world they are living in? Am I doing enough?
I'm often tired from not enough sleep and from trying to fit it all in but I love this job. I truly love it. I'm good at it and it makes me feel good about my place in this world. After twenty-one years, I can usually identify if a kiddo has trouble learning because he is tired, or has sensory issues, or has developmental issues, or is simply sad. It's one of my strengths. There are so many things that impact learning. It is so much more than giving someone a book or technology or even knowledge. Is the child hot or cold? Is the child sad or mad? Is he hungry or full? Is she sick or lonely? Did mom and dad have a fight? Did someone get sick? Is she sick? Did someone die? Did someone change the routine at home? All of it impacts learning.
At the end of the day, I climb back in my little car and drive back home, this time in heavier more congested traffic. As I pull into my driveway, I say a prayer that my oldest son cared enough to bring home schoolwork to work on after working all night. I say a prayer that I remember to ask him and to remind him to care enough to dig it out and work on it. It's so easy to let him coast. School is easy for him. He asks for so little help. I still need to put in the effort. It matters. He matters.
I say a prayer that my youngest son had a good day. That he remembered all his materials. That he wrote in his agenda. That the teachers posted information on their websites or the school messaging system. I pray that people were kind to him. That his schedule didn't get changed or altered causing him to become angry or tearful or to completely come unglued. I pray that I walk into a happy, calm, welcoming home and not a frustrated battlefield of anxiety fed distress. I pray for the strength to help him through the things I prayed would not happen because more often than not, they did, and they will. I pray for patience. I pray for understanding. It matters. He matters.
I pray that I can help my sons become their best selves while fitting in the time to help my families at school become their best selves. Putting off schoolwork until his work is completed and he is settled in for the evening. Working until eight or nine most nights. It matters. They matter.
When the nights come and things are everything I prayed they wouldn't be, I try to remind myself that he has teachers who possess unique strengths and weaknesses and individual worries and concerns that I know nothing about. I do not know their circumstances. I do not know their secret, behind the scenes efforts. I do not have their experiences and they do not have mine. They may not have been trained for eighteen years in a corrections setting by students that no one else wanted to teach. Students that were tossed aside and who challenge you to care about them even as they made it harder to do so. They may not have been trained by a son that can't regulate or organize or focus. A son who challenges you to care if he succeeds or fails, even as he makes it harder to do so. On those nights, I remind myself that I need to reach out. I need to communicate with them. I need to educate them about my son and about what works for him/with him. I need to help them help me make my son successful. I need to put forth the extra effort. I also need to be willing to listen and to learn. It matters.
Sometimes I'm tired. Giving 100% in a world that seems so angry and violent is exhausting. It doesn't seem like it's enough but it's all I can do. It's all I have to give. I pray it is enough for my sons. For my students. For my families. Because they matter. And maybe if they matter enough, even just to me, it will be enough. At least for them. Maybe in turn they will go out and give 100%. Because it matters. We all matter.
I pray for us all.
Monday through Friday, my day starts at 4:45 AM. I leave my house by 6:15 AM, most days before my children's feet have even hit the first floor of our home. With construction in all directions, my daily commute has stretched to a lovely hour one way in a little Hyundai Sonata. It gives me lots of time to think, and plan, and analyze. Sometimes too much time.
I think about my children. How much I love them. How proud I am of the strong, healthy, happy, young men that they seem to be becoming. How I need to help them continue to grow and develop. How I need to push them to do better, be better, aim higher.
I think about my other children. The children in my classroom. Who is too quiet? Who isn't quiet enough? Who needs extra hugs? Who always seems to want a hug? Who needs to be more active? Who needs to be less active? Are my methods helping? Are my methods hurting? Am I pushing them too hard? Am I pushing them enough? What can I do to push them to do better, be better, aim higher?
I think about my parents. The parents of the children in my classroom. Who do I know by name? Who don't I know at all? Who seems to want help? Who seems to want me to leave them alone? How can I support them more? How can I communicate more effectively? Do they have any idea how much I absolutely love their child just the way he or she is? Do they know the child that I know in my classroom? Do they share their days with each other? Do they share how they feel about this crazy world they are living in? Am I doing enough?
I'm often tired from not enough sleep and from trying to fit it all in but I love this job. I truly love it. I'm good at it and it makes me feel good about my place in this world. After twenty-one years, I can usually identify if a kiddo has trouble learning because he is tired, or has sensory issues, or has developmental issues, or is simply sad. It's one of my strengths. There are so many things that impact learning. It is so much more than giving someone a book or technology or even knowledge. Is the child hot or cold? Is the child sad or mad? Is he hungry or full? Is she sick or lonely? Did mom and dad have a fight? Did someone get sick? Is she sick? Did someone die? Did someone change the routine at home? All of it impacts learning.
At the end of the day, I climb back in my little car and drive back home, this time in heavier more congested traffic. As I pull into my driveway, I say a prayer that my oldest son cared enough to bring home schoolwork to work on after working all night. I say a prayer that I remember to ask him and to remind him to care enough to dig it out and work on it. It's so easy to let him coast. School is easy for him. He asks for so little help. I still need to put in the effort. It matters. He matters.
I say a prayer that my youngest son had a good day. That he remembered all his materials. That he wrote in his agenda. That the teachers posted information on their websites or the school messaging system. I pray that people were kind to him. That his schedule didn't get changed or altered causing him to become angry or tearful or to completely come unglued. I pray that I walk into a happy, calm, welcoming home and not a frustrated battlefield of anxiety fed distress. I pray for the strength to help him through the things I prayed would not happen because more often than not, they did, and they will. I pray for patience. I pray for understanding. It matters. He matters.
I pray that I can help my sons become their best selves while fitting in the time to help my families at school become their best selves. Putting off schoolwork until his work is completed and he is settled in for the evening. Working until eight or nine most nights. It matters. They matter.
When the nights come and things are everything I prayed they wouldn't be, I try to remind myself that he has teachers who possess unique strengths and weaknesses and individual worries and concerns that I know nothing about. I do not know their circumstances. I do not know their secret, behind the scenes efforts. I do not have their experiences and they do not have mine. They may not have been trained for eighteen years in a corrections setting by students that no one else wanted to teach. Students that were tossed aside and who challenge you to care about them even as they made it harder to do so. They may not have been trained by a son that can't regulate or organize or focus. A son who challenges you to care if he succeeds or fails, even as he makes it harder to do so. On those nights, I remind myself that I need to reach out. I need to communicate with them. I need to educate them about my son and about what works for him/with him. I need to help them help me make my son successful. I need to put forth the extra effort. I also need to be willing to listen and to learn. It matters.
Sometimes I'm tired. Giving 100% in a world that seems so angry and violent is exhausting. It doesn't seem like it's enough but it's all I can do. It's all I have to give. I pray it is enough for my sons. For my students. For my families. Because they matter. And maybe if they matter enough, even just to me, it will be enough. At least for them. Maybe in turn they will go out and give 100%. Because it matters. We all matter.
I pray for us all.
Wednesday, September 13, 2017
Finding the Strength
As my son ages, I find myself blogging less and less. It's not that I have less to say. More that our life is very full and I'm trying to find the balance in blogging and safeguarding my son's privacy as he's entering those challenging teen years. In the early years, this blog was my free therapy. Who has time for counseling?!? I never thought anyone would actually read it. Seriously? Who cares about a middle age mom with a kid like mine? But I wrote it anyway because my blog was an outlet for the fear, hurt, and confusion that comes with raising a child with special needs. As time went on, it became evident that people were reading it. People in Thailand and Germany and Russia. People in France and Japan and the United States. I got messages from people all around the world asking questions. Looking for answers. I got messages from people thanking me for sharing my experiences because it helped them better understand kids with special needs. Many of them had no experience with a child like mine. Reading about our experiences made them more mindful, less judgmental, even kinder. Most importantly, I got messages from parents saying "Thank you. I'm not alone. Someone else feels the way I feel and experiences what I experience."
With all of that said, let me take advantage of my free therapy, my online support system, and tell you about the start of this new school year. It's been entertaining to say the least. (She said half laughing, half weeping.) Our youngest son has entered the sixth grade. Middle school. If you've been following along, you remember that he transitioned to middle school last year in the fifth grade with much anticipation and trepidation. We were fearful to say the least. When his learning support teacher left for a different teaching position within weeks of starting the year, our fear turned to terror. What were we going to do? How was he going to adjust? Amazingly, he had the best school year that he's had in years. That replacement learning support teacher? A gift from God. She GOT him. I mean really, truly GOT him. Understood him. She had the unique talent and ability to balance holding him accountable, while pushing him further, while supporting him as he stretched and grew. She was a blessing. His whole year was a blessing. Honor roll. Distinguished honor roll. It was amazing. He was amazing.
Last year was so amazing that when we got his PSSA scores and he once again scored Below Basic in English/Language Arts and Basic in math, we were angered and outraged on his behalf. After all his hard work; all their hard work; all our hard work, his scores had not improved. Our frustration inspired me to reach out to our special education director and ask what could be done. Our son who desperately needs positive peer interaction was kept from attending school clubs and groups because he has constant PSSA remediation. Yet, the PSSA scores did not reflect those remediation efforts or his outstanding report card grades. What could be done? In complete agreement that life is more than a standardized test that is not designed to reflect the efforts of any child with learning issues, she took our concern to the school superintendent. God bless this man!!!! He is a true child advocate and teacher advocate. He made the decision to allow kids like our son to take part in school activities as long as their efforts continue and their grades reflect those efforts. Score one for the kids! Thank you sir. We are forever in your debt.
This year isn't what any of us expected. Our son started school thrilled with life because his brother got a truck and is taking him to school everyday. No more riding the bus with the mean girl. He was given permission to join groups and clubs. He's switching to percussion in the band. Last year, he had excellent report cards. In his mind, he had this school thing all figured out. It was finally all going his way. His new catch phrase was "I got this Mom!"
Then reality struck. Fast forward to the present. It has not been a pretty transition. Over the summer, his blocking and stuttering had decreased so much so that his family doctor wanted to take it off his medical record. I asked him not to. Thank goodness I did. Since school has started, he is back to blocking. He's back to stuttering. The drooling has returned. He has eaten two shirt collars within the last week. The old anxiety behaviors are all back with a vengeance. Bedtime has been a nightmare. He can't sleep. He has an upset stomach all the time. He's developing migraines so severe that he had to leave school vomiting. In the first two weeks of school, he incorrectly attended three classes that he wasn't supposed to be in. He forgot to attend another class that he was supposed to attend. His learning support teacher is on maternity leave until the end of the first quarter so he is trying to transition to a new grade with new teachers and new expectations with a substitute. Today, I got a call from the school from his teacher because he's had an issue in her room two days in a row.
I"m a teacher with all the preparation and planning that goes with that position. In addition, I commute an hour and a half everyday. I'm president of the band parent association at our sons' school. My husband is an officer in the fire company. Our lives are FULL! How do we manage it all? How do we make it all work? No. Seriously. I'm asking....
Okay. He's what we do. We pray. I mean specific "Thanks God. You are mighty and awesome and all powerful. But Lord... I need X, Y, and Z to get through this night." Specific, meaningful, heartfelt prayer. We ask our friends and loved ones to pray, those same specific needs. We take a deep breath and we just breathe. We communicate. Together and with those that can be a support for us. We listen. Son, what's happening? What do you need? How can we fix this? What are your plans for this situation in the future? We problem solve as a family and as a team. We read and research and make suggestions when we think we have an idea or a solution. We communicate with the school team (even if they don't always seem thrilled to hear from you). Most importantly, we love one another. Even when it's not fun and it's not easy and it would be easier to give up or give in. Giving up is never an option.
And sometimes... just sometimes... all the pieces come together beautifully, as if maybe God is up there laughing, saying "Child, I had you the whole time." and you find yourself on the other side of the ugly in a better place than you started. God is good. He sees us through. He is our rock and our foundation. Those aren't just words. They are our truth. I AM NOT STRONG ENOUGH TO DO THIS ON MY OWN. God is my strength. God is my salvation. God answers prayer. He did today. He does everyday.... even when we can't see it in the darkness.
Don't give up. You are not alone.
With all of that said, let me take advantage of my free therapy, my online support system, and tell you about the start of this new school year. It's been entertaining to say the least. (She said half laughing, half weeping.) Our youngest son has entered the sixth grade. Middle school. If you've been following along, you remember that he transitioned to middle school last year in the fifth grade with much anticipation and trepidation. We were fearful to say the least. When his learning support teacher left for a different teaching position within weeks of starting the year, our fear turned to terror. What were we going to do? How was he going to adjust? Amazingly, he had the best school year that he's had in years. That replacement learning support teacher? A gift from God. She GOT him. I mean really, truly GOT him. Understood him. She had the unique talent and ability to balance holding him accountable, while pushing him further, while supporting him as he stretched and grew. She was a blessing. His whole year was a blessing. Honor roll. Distinguished honor roll. It was amazing. He was amazing.
Last year was so amazing that when we got his PSSA scores and he once again scored Below Basic in English/Language Arts and Basic in math, we were angered and outraged on his behalf. After all his hard work; all their hard work; all our hard work, his scores had not improved. Our frustration inspired me to reach out to our special education director and ask what could be done. Our son who desperately needs positive peer interaction was kept from attending school clubs and groups because he has constant PSSA remediation. Yet, the PSSA scores did not reflect those remediation efforts or his outstanding report card grades. What could be done? In complete agreement that life is more than a standardized test that is not designed to reflect the efforts of any child with learning issues, she took our concern to the school superintendent. God bless this man!!!! He is a true child advocate and teacher advocate. He made the decision to allow kids like our son to take part in school activities as long as their efforts continue and their grades reflect those efforts. Score one for the kids! Thank you sir. We are forever in your debt.
This year isn't what any of us expected. Our son started school thrilled with life because his brother got a truck and is taking him to school everyday. No more riding the bus with the mean girl. He was given permission to join groups and clubs. He's switching to percussion in the band. Last year, he had excellent report cards. In his mind, he had this school thing all figured out. It was finally all going his way. His new catch phrase was "I got this Mom!"
Then reality struck. Fast forward to the present. It has not been a pretty transition. Over the summer, his blocking and stuttering had decreased so much so that his family doctor wanted to take it off his medical record. I asked him not to. Thank goodness I did. Since school has started, he is back to blocking. He's back to stuttering. The drooling has returned. He has eaten two shirt collars within the last week. The old anxiety behaviors are all back with a vengeance. Bedtime has been a nightmare. He can't sleep. He has an upset stomach all the time. He's developing migraines so severe that he had to leave school vomiting. In the first two weeks of school, he incorrectly attended three classes that he wasn't supposed to be in. He forgot to attend another class that he was supposed to attend. His learning support teacher is on maternity leave until the end of the first quarter so he is trying to transition to a new grade with new teachers and new expectations with a substitute. Today, I got a call from the school from his teacher because he's had an issue in her room two days in a row.
I"m a teacher with all the preparation and planning that goes with that position. In addition, I commute an hour and a half everyday. I'm president of the band parent association at our sons' school. My husband is an officer in the fire company. Our lives are FULL! How do we manage it all? How do we make it all work? No. Seriously. I'm asking....
Okay. He's what we do. We pray. I mean specific "Thanks God. You are mighty and awesome and all powerful. But Lord... I need X, Y, and Z to get through this night." Specific, meaningful, heartfelt prayer. We ask our friends and loved ones to pray, those same specific needs. We take a deep breath and we just breathe. We communicate. Together and with those that can be a support for us. We listen. Son, what's happening? What do you need? How can we fix this? What are your plans for this situation in the future? We problem solve as a family and as a team. We read and research and make suggestions when we think we have an idea or a solution. We communicate with the school team (even if they don't always seem thrilled to hear from you). Most importantly, we love one another. Even when it's not fun and it's not easy and it would be easier to give up or give in. Giving up is never an option.
And sometimes... just sometimes... all the pieces come together beautifully, as if maybe God is up there laughing, saying "Child, I had you the whole time." and you find yourself on the other side of the ugly in a better place than you started. God is good. He sees us through. He is our rock and our foundation. Those aren't just words. They are our truth. I AM NOT STRONG ENOUGH TO DO THIS ON MY OWN. God is my strength. God is my salvation. God answers prayer. He did today. He does everyday.... even when we can't see it in the darkness.
Don't give up. You are not alone.
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