Today is one of those days. Our son woke in one of his full blown, manic, obsessive moods. Days like these are "managed". All we can do is hope to channel his energy into positive directions and hang on for the ride.
I woke up before our alarm went off this morning to the sound of someone rummaging through my bathroom vanity drawers. No question. I knew who was doing the rummaging so I called out to my youngest son and asked him what he needed. He appeared beside me, completely dressed and ready for church. Instead of answering me, he launched into an animated conversation about his outfit and the fact that he just needed socks and sneakers and he was ready to go. When I told him he looked very handsome but he needed to get a bath, he got very upset with me and left the room. He never closed the vanity drawer, retrieved what he wanted, or completed that thought pattern.
We finally got him into a tub and started that process. While laying out his towel and gathering his clothes to redress, we discovered he was wearing an old pair of old pants that were too tight and no underwear so we found a clean pair of underwear and switched pants. While dripping wet, he declared that he wanted french toast sticks and sausage for breakfast. As I went to work making coffee and starting his breakfast, he bopped around and weaved in and out attempting to "help". I finally told him to take his milk to the table and sit down. He sat for two seconds before popping back off to wander off on another train of thought. Knowing we wouldn't get anywhere soon with him as he was, I called him out to take his medicine. We were going to need all the help today that we could get.
In the living room, on the coffee table, I discovered a quart size Ziploc bag labeled "Easter Gift Bag". In it were pieces of paper in different shades of blue. In addition, I also found a bowl full of the same shredded paper. Each piece was labeled with the name of someone we knew and the word "stinks". I thought I knew what I had discovered but I had no idea what it was for. Our oldest son had babysat the night before so my husband and I could go to the movies and supper. When we called to check in, he told us things were going well. Our youngest was fixated on tearing up pieces of paper. He told us he wasn't messing up anything else so he gave up trying to get him to stop. He figured paper shredding wasn't that big of a deal. We agreed and told him to call us if he had any problems. He said they wouldn't. They were just hanging out.
When I found last night's shredded paper, I still couldn't discern it's use so I asked him what they were. Unfortunately, I had gathered all the shreds of paper into the bag. This set him off. He launched into a crying, yelling fit that I struggled to interpret. When I finally got him to slow down and explain why he was so upset, it sort of made sense. He was planning an Easter Sunday get together. The shreds of paper were a game. Each person would pick a piece of paper. If he/she drew out his/her own name, that person would then need to drink a hot bowl of soup in one minute. His mood lifted and tears melted away as he explained his Easter Sunday activities. He soon began to manically launch into a non-stop fury of words about Easter Sunday and this party that he was planning.
By the time we got to church, the combination of his medicine and the twenty minute car ride had helped to relax him to such a degree that we got through the service with very few problems. He even conducted the choir from a seated position instead of standing and proudly waving his colored pencils in the air as he often does. We had a small round of tears when we asked him to wait a minute to go down to children's church. He was convinced that that minute was going to make him late and brought on the tears. He was able to calm down and move forward.
We stopped at the grocery store on the way home for milk and bread. He wanted to come along because he wanted a chocolate milk. I told him he could come in with me if he didn't ask for a lot of stuff and stayed with me. He did and kept his word. He also bounced, bopped, danced, and boogied his way through the store. We did okay.
Back at home, under our bed, my husband discovered a plastic coffee can labeled #2. Inside was a plastic ginger ale bottle with a paper rolled up and tucked inside. The lid of the bottle had been taped shut. When questioned what this was, he explained that it was the instructions for his wedding. He then excitedly ran to the corner kitchen cupboard and declared "There's another one!" Tucked in the back of the cupboard was a duplicate coffee can labeled #1. He put them both back where they were and the topic was effectively ended.
Eating a meal with our son is always challenging. Sitting still long enough to finish a meal rarely happens. It often takes several rounds of reheating the same plate until he completes the whole meal, not because he doesn't want the food, or because he is too full. It's because he can't sit still long enough to finish. He also struggles to eat with his utensils and not his fingers. A meal involves multiple reminders to use a fork. Use a spoon. Use a napkin. Don't wipe your mouth on your shirt. Don't pull the ice cubes out of your drink. It can be frustrating for us all. Today was no exception.
When he became exasperated, he started searching for his list he had started before church. Our son can become fixated on "lists". Lists of people to invite to parties. Lists of people that he loves. Lists of people that have upset him or offended him in some way. Lists of teams for games. Lists of musical productions that he is planning. The list of his lists is unending.
From there, he decided that he was going to go out in the yard and pick up dog poop to prepare the yard for the Easter egg hunt. We explained that Easter was still two weeks away but he was more than welcome to just go out and play. Next thing we know, he is coming down the steps with a backpack and the intention of going out to pick up dog poop. We convinced him to put on muck boots and a coat. He found a pair of disposable latex gloves and put those on. We also convinced him to use a garbage bag without the backpack. Backpacks and poop do NOT go together.
At dinner last night, my husband and I reflected on our youngest son. We are amazed by how his mind works. We are scared of how his mind works. We are amused by his mind. We are frustrated by his mind. In the end, he is who he is. His mind is a jumble of chaotic creativity. He is bursting with ideas and enthusiasm. Our job is to help him learn to manage how his brain is wired. It will never be boring. That's for sure.
Sunday, March 22, 2015
Saturday, February 21, 2015
Time to Medicate? Why You Should Never Doubt Your Decisions
The decision to place our youngest son on Attention Deficit Disorder (ADD) medicine was not something we took lightly. It was a decision that we fought for a long time. We used behavior management techniques, dietary modification, and many of the other popular methods for trying to help a child cope with ADD. In spite of our best efforts, our son ultimately made the decision for us.
As I have discussed in previous postings, it was a series of events that led us to make the decision to place our son on ADD medication. His frustration with himself and his inability to focus and adequately express himself to others resulted in a very angry child. The final straw was the day I walked into the kitchen and found my son bleeding all over because he had attempted to cut up an apple for a snack rather than come and ask for help. His impulsive behavior was becoming more and more dangerous as his gross motor and fine motor skills improved.
It took awhile to find the right medicine that worked for him as it was intended. We were trying to treat ADD symptoms in a child that had complicated neurological issues that could not be explained simply as ADD. Ultimately, we found a medicine that didn't sedate him, didn't alter his moods or personality, but still offered a degree of impulse control. The medicine hasn't given him the degree of focus needed to help him get through a school day as well as the school had hoped but our biggest concern was being addressed. The medicine helped him slow down his thought process long enough to help him curb his impulsiveness and reduce the risk he often posed to himself.
Despite the gains we have made, I have often questioned our decision. You hear and read about those parents that are able to manage their child's ADD symptoms without the need for medicine and it makes me question if I am working hard enough. It makes me question my motivations. I try to always be honest with myself and my intentions. I have a fairly clear conscience when it comes to my son. His best interest is almost always my first priority.
Tonight, I was given clarity and resolution on this issue. After giving our son a haircut, I put him in the shower and went out to the living room to continue working on a test I was writing for my students. In a matter of minutes, he appeared, dripping wet and bleeding all over. I quickly dried him off so I could see where he was bleeding. He told me that he was trying to shave and cut his thumb with the razor. Thankfully, he had removed a swath of skin from his thumb but didn't appear to be bleeding from anywhere else. We applied pressure to the wound and then tightly bandaged it to stop the bleeding. Our next step was cleaning up the trail of blood that covered the bathroom, vanity drawers, toilet paper roll, towels, and bedroom floor.
His medicine had worn off in the early afternoon so he was back to "himself". Because we know he is impulsive, we keep all razors and sharp objects up out of reach. He had climbed to the ledge up above the shower to get a razor. He then used baby oil gel and attempted to shave his legs. When he sliced his thumb, he hopped out of the shower, dripping water everywhere, and attempted to stop the bleeding with toilet paper. When he couldn't stop the bleeding, he ran to the vanity and attempted to get band-aids to cover the slice. When that failed, he came to me in a panic.
While processing the situation, I questioned if he was bleeding anywhere else. Where had he used the razor? For a moment, he forgot how upset he was and proudly said "I shaved my legs. Feel how smooth they are." He gave me a big grin until he remembered that he had hurt himself and was upset.
I felt absolute clarity in that moment. This is why we put him on the medicine. His brain needed assistance to slow his thought process down enough to let him think through his ideas, impulses and decisions. When I look at where we were two years ago and where we are today, I am clear that we made the right decision for us. The medicine has given us the ability to breathe. Prior to the medicine, we were supervising an eight year-old with the same level of supervision that you would give a three or four year-old. We were hyper diligent to the point of controlling. The medicine has helped him start to develop a degree of self regulation that is more age appropriate for a boy of nine. It has allowed us to have a sense of confidence that we can allow him to take chances and begin to self regulate without us hovering over him. That growth is needed. It is to be celebrated.
I hate these moments that put the fear back in my mind because it's always in my heart. On the other hand, I'm grateful that we have made enough progress that I see it as a bad moment and not a sign that things are not going in the right direction. Instead, tonight's episode showed me how much progress we have made and where we were, how far we have come, and where we are going. I am grateful for moments of clarity. As always, I am grateful for God's grace.
As I have discussed in previous postings, it was a series of events that led us to make the decision to place our son on ADD medication. His frustration with himself and his inability to focus and adequately express himself to others resulted in a very angry child. The final straw was the day I walked into the kitchen and found my son bleeding all over because he had attempted to cut up an apple for a snack rather than come and ask for help. His impulsive behavior was becoming more and more dangerous as his gross motor and fine motor skills improved.
It took awhile to find the right medicine that worked for him as it was intended. We were trying to treat ADD symptoms in a child that had complicated neurological issues that could not be explained simply as ADD. Ultimately, we found a medicine that didn't sedate him, didn't alter his moods or personality, but still offered a degree of impulse control. The medicine hasn't given him the degree of focus needed to help him get through a school day as well as the school had hoped but our biggest concern was being addressed. The medicine helped him slow down his thought process long enough to help him curb his impulsiveness and reduce the risk he often posed to himself.
Despite the gains we have made, I have often questioned our decision. You hear and read about those parents that are able to manage their child's ADD symptoms without the need for medicine and it makes me question if I am working hard enough. It makes me question my motivations. I try to always be honest with myself and my intentions. I have a fairly clear conscience when it comes to my son. His best interest is almost always my first priority.
Tonight, I was given clarity and resolution on this issue. After giving our son a haircut, I put him in the shower and went out to the living room to continue working on a test I was writing for my students. In a matter of minutes, he appeared, dripping wet and bleeding all over. I quickly dried him off so I could see where he was bleeding. He told me that he was trying to shave and cut his thumb with the razor. Thankfully, he had removed a swath of skin from his thumb but didn't appear to be bleeding from anywhere else. We applied pressure to the wound and then tightly bandaged it to stop the bleeding. Our next step was cleaning up the trail of blood that covered the bathroom, vanity drawers, toilet paper roll, towels, and bedroom floor.
His medicine had worn off in the early afternoon so he was back to "himself". Because we know he is impulsive, we keep all razors and sharp objects up out of reach. He had climbed to the ledge up above the shower to get a razor. He then used baby oil gel and attempted to shave his legs. When he sliced his thumb, he hopped out of the shower, dripping water everywhere, and attempted to stop the bleeding with toilet paper. When he couldn't stop the bleeding, he ran to the vanity and attempted to get band-aids to cover the slice. When that failed, he came to me in a panic.
While processing the situation, I questioned if he was bleeding anywhere else. Where had he used the razor? For a moment, he forgot how upset he was and proudly said "I shaved my legs. Feel how smooth they are." He gave me a big grin until he remembered that he had hurt himself and was upset.
I felt absolute clarity in that moment. This is why we put him on the medicine. His brain needed assistance to slow his thought process down enough to let him think through his ideas, impulses and decisions. When I look at where we were two years ago and where we are today, I am clear that we made the right decision for us. The medicine has given us the ability to breathe. Prior to the medicine, we were supervising an eight year-old with the same level of supervision that you would give a three or four year-old. We were hyper diligent to the point of controlling. The medicine has helped him start to develop a degree of self regulation that is more age appropriate for a boy of nine. It has allowed us to have a sense of confidence that we can allow him to take chances and begin to self regulate without us hovering over him. That growth is needed. It is to be celebrated.
I hate these moments that put the fear back in my mind because it's always in my heart. On the other hand, I'm grateful that we have made enough progress that I see it as a bad moment and not a sign that things are not going in the right direction. Instead, tonight's episode showed me how much progress we have made and where we were, how far we have come, and where we are going. I am grateful for moments of clarity. As always, I am grateful for God's grace.
Tuesday, February 17, 2015
What Gets You Through the Tough Times?
I have an amazing life filled with beautiful people and innumerable blessings. Many things in my life also haven't gone as expected. I couldn't be more grateful for those unforeseen circumstances because without them I wouldn't be who I am today. Those trials have made me stronger as a person and more faithful as a believer. There are two guiding truths that I try to live by. Your attitude and your choices help determine your circumstances. God's grace gets you through those circumstances when you can't do it on your own.
Your perspective on the people and situations that you encounter often determines the final outcome. Truth be told, there are days I don't know if I can deal with all that life has given me but I look at it this way, what's the alternative? Give up? Give in? Quit? Walk out? Walk away? Those are choices. Doing nothing is a choice. Standing strong. Fighting back. Educating yourself. Working hard. Those are choices. I choose the positive choices whenever possible. That's where attitude comes in.
I have bad days. You've read about them in this blog. There are days I feel sad, beat down, angry, let down. But my attitude determines what I do with those feelings. I refuse to let those feelings influence my decisions. I choose instead to use those feelings to fuel my determination in a positive direction. My attitude is that families stick together. Period. Kids are not disposable. Period. Marriages are not temporary. Period. At times, life can be unfair and downright rotten. Get over it. Move forward. If something is wrong, fix it. Don't play the victim in your life. Get angry and find a solution.
These aren't empty words. Those that know me, know that I stand by them. Some of you know some of my past but very few know all of it. Those that know me well know that I will overcome anything you put in my path. Anything.
Why?
God's grace. It's not my strength. It's not my determination. I'm not that strong. I am weak and flawed and screw up royally. God's grace gives my strength when I am weak. He gives me answers when I have none. He's the voice in my head giving me pause or pushing me forward. I'm not that strong. God is.
My ferociously strong autistic girl stood before me, bellowing her rage and injustice at the world. I felt my anger rise to the surface. At that moment, a little voice inside told me "Take a breath. Breathe deep." I offered up a silent prayer Let me say the right words. Let me know the right course of action. Not knowing where the words came from, I calmly heard myself say "Please stop yelling at me. I love you. You know I'm not what has you upset. You know what the real problem is. Stop yelling and talk to me." She stopped, threw her arms around me and said "I love you. I'm sorry." and started telling me that she's terrified because she's being transferred to a new program soon and she doesn't know how to handle it.
A few short hours later, I walk into my home to see my son ready for battle. His body tight with anger, eyes shooting messages that I don't understand. I can see where this is going and it's not anywhere positive. I'm tired. I've already put in a long day. Can't I just come home to a loving family, a peaceful evening? As he starts to launch into a fit, I hear that quiet voice inside guiding me "Take a breath. Breathe deep." I hear myself say I love you. Please stop yelling at me and tell me what's wrong.
I always regret the moments when I choose to ignore that quiet guiding voice inside because I'm tired or frustrated or just sick of being the bigger person. Those moments never end positively and I'm always left with regret. Life's trials teach me that I need God and his grace because I'm not strong enough to do it on my own.
How do you deal with life's trials? What sees you through the tough times? Many blessings to you and yours.
Your perspective on the people and situations that you encounter often determines the final outcome. Truth be told, there are days I don't know if I can deal with all that life has given me but I look at it this way, what's the alternative? Give up? Give in? Quit? Walk out? Walk away? Those are choices. Doing nothing is a choice. Standing strong. Fighting back. Educating yourself. Working hard. Those are choices. I choose the positive choices whenever possible. That's where attitude comes in.
I have bad days. You've read about them in this blog. There are days I feel sad, beat down, angry, let down. But my attitude determines what I do with those feelings. I refuse to let those feelings influence my decisions. I choose instead to use those feelings to fuel my determination in a positive direction. My attitude is that families stick together. Period. Kids are not disposable. Period. Marriages are not temporary. Period. At times, life can be unfair and downright rotten. Get over it. Move forward. If something is wrong, fix it. Don't play the victim in your life. Get angry and find a solution.
These aren't empty words. Those that know me, know that I stand by them. Some of you know some of my past but very few know all of it. Those that know me well know that I will overcome anything you put in my path. Anything.
Why?
God's grace. It's not my strength. It's not my determination. I'm not that strong. I am weak and flawed and screw up royally. God's grace gives my strength when I am weak. He gives me answers when I have none. He's the voice in my head giving me pause or pushing me forward. I'm not that strong. God is.
My ferociously strong autistic girl stood before me, bellowing her rage and injustice at the world. I felt my anger rise to the surface. At that moment, a little voice inside told me "Take a breath. Breathe deep." I offered up a silent prayer Let me say the right words. Let me know the right course of action. Not knowing where the words came from, I calmly heard myself say "Please stop yelling at me. I love you. You know I'm not what has you upset. You know what the real problem is. Stop yelling and talk to me." She stopped, threw her arms around me and said "I love you. I'm sorry." and started telling me that she's terrified because she's being transferred to a new program soon and she doesn't know how to handle it.
A few short hours later, I walk into my home to see my son ready for battle. His body tight with anger, eyes shooting messages that I don't understand. I can see where this is going and it's not anywhere positive. I'm tired. I've already put in a long day. Can't I just come home to a loving family, a peaceful evening? As he starts to launch into a fit, I hear that quiet voice inside guiding me "Take a breath. Breathe deep." I hear myself say I love you. Please stop yelling at me and tell me what's wrong.
I always regret the moments when I choose to ignore that quiet guiding voice inside because I'm tired or frustrated or just sick of being the bigger person. Those moments never end positively and I'm always left with regret. Life's trials teach me that I need God and his grace because I'm not strong enough to do it on my own.
How do you deal with life's trials? What sees you through the tough times? Many blessings to you and yours.
Sunday, February 1, 2015
Allowing Growth to Happen
Because I am single sided deaf and tend to sleep on the side which has my good ear, I often don't know that our son is awake until he comes to waken me, or a loud noise penetrates my pillow. That was the case this morning. I was startled awake by a noise that I quickly realized was the sound of plates being put gently (please interpret sarcasm here) into the kitchen cupboard. This sound effectively launched me into full consciousness. I called to our son and asked him to come see me. As soon as he entered our bedroom, I could tell by the gleam in his eye and the telltale vibration of energy coming off of him that he was in one of his excited, fixated states. He was a man on a mission.
I took a deep breath and asked him what he was up to. He told me that he was unloading the dishwasher for me and making his breakfast. When I started to get out of bed, he quickly exclaimed "I only have the easy stuff to do now. The spoons and forks and knives." With that pronouncement, he quickly scampered out of the room. I quickly got around and went out to see what state the kitchen may be in. To my pleasant surprise, things looked pretty good. He had streudel in the toaster and was pulling peanut butter out of the cupboard in his jittery, manic state of unrestrained happiness. I told him I would finish getting his breakfast around if he wanted to finish putting the silverware away. He spun around and grabbed the milk out of the fridge, then spun back around and started putting the silverware where it belonged. Full on energy burst. Woohoo!
Because his energy can sometimes feed my own, I took a deep breath and took stock of the situation. He had used a step stool to put the high items away but had even put that back where it belonged. Nothing was broken. For once, nothing was spilled or strewn about. The kitchen looked pretty good. As he spread the icing on top of the peanut butter I had spread on his streudel, he looked at me and said "I wanted to do something for you because you do so much for me. You pack my lunch and cook my food. You're always doing stuff for me. I wanted to do this for you." Wow. Total heart melt.
This small morning interaction brought home several very important points for me. The first is that he does see and recognize what we are doing for him out of love. Sometimes it doesn't feel that way when we are battling over completing homework or cleaning up after himself. It's nice to know that he does appreciate us. The second is that he has the empathy skills to desire to do something back for someone that does for him. So often, it seems as if kids these days are lacking empathy and compassion for others. We've tried really hard to instill that in our children. It was nice to see the evidence that our hard work may be paying off. Finally, my little guy isn't so little any more. He is growing up. Maybe I need to stop working so hard to protect him from failure and rejection and let him spread those little wings and start to experiment with flying. It doesn't mean I won't be there to help him when he stumbles and protect him when there's danger. It just means I need to let him make mistakes, learn from independent experiences, and experiment with who he is and who he may become. When we came so close to losing him in the past, it's hard to take that step back but independence and self-sufficiency is our ultimate goal. I need to let my little bird start to fly.
Friday, January 23, 2015
Things That Make Them Go Hmmm?!?
Tonight is more of a status update than anything else. Our son had his bi-yearly neurology appointment yesterday. These appointments are meant to review his medical conditions; track his developmental progress; gauge the current effectiveness of his medicines, treatments, and therapies; and discuss any issues that have developed or worsened over the last six months. If you've been reading recent blogs, you know that we had some issues to discuss.
Our son's specialist is an award winning pediatric neurologist who is doing some cutting edge research in genetics and its impact on kids with developmental issues and autism spectrum disorders. He's been in our son's life since he was two years old. We are all very comfortable with him and his opinions. Even better, he's a really great guy who loves his kids and sees them as individuals, not a disorder to be treated.
As he typically does before coming in to meet with us, the doctor reviewed our son's file and any documents that we had brought along for his benefit. These generally include feedback from his teaching team, the most recent Individualized Education Plan (IEP), recent therapy case notes, recent testing assessments, and a couple parent surveys he has us complete prior to the appointment. With that information fresh in his mind, he comes in and generally gets a feel for how we are feeling about our son's progress. From there, he does a neurological exam, a physical exam, and generally just interacts with our son to see for himself how he is progressing. We never feel rushed by him or like we are taking up too much time. After the exam, we generally ask questions and he reviews the options for changes that we may or may not want to make for our son's treatment.
I hope you're getting a sense of how thorough and invested this man is in what he does. It's important that you understand that before I continue with the story...
From the very beginning, our son has been a puzzle that no one can solve. No one can tell us why he is the way his is. They know it is neurologically based but he doesn't fit any syndrome or disorder or "spectrum". A misdiagnosis (with a different neurologist) sent us off on a wild goose chase to the Children's Hospital of Philadelphia with the warning that they were going to need to split our son's skull and insert spacers to allow it to grow properly. I was never so happy in my life to receive a misdiagnosis! Fortunately, that surgery was not required. At times, it feels as if we have been to every department and met every specialist at Geisinger Medical Center as we've searched for answers.
Somewhere along the way, we've learned to trust our instincts and began to openly advocate for what we wanted for our son. It has made a world of difference in his treatment and in his development. At our most recent specialist appointment, we again brought up our son's strange developmental cycle that always seems to involve a simultaneous regression in his speech; an increase in his drooling and clumsiness; and an amazing increase in developmental skills or abilities. Those within our circle of friends and family can attest to the fact that this pattern has been a consistent part of his development from early on. When we again brought this up to his doctor and mentioned the current severity of his blocking and stuttering, paired with the amazing burst of development, his answer surprised us. But only a little.
When an award winning doctor looks you in the eye and says "I don't know why this happens. I'm not experienced with this.", it's a little shocking. Apparently in his experience, a regression in development tends to be universal. He feels it is quite unusual for a child to experience a significant regression and also experience significant bursts of development in other areas. He can't explain why this is happening because he hasn't experienced this before. Several specialists in this field meet regularly to eat, chat, and discuss unique or unusual cases and get feedback from their peers. Our doctor promised to bring up our son's situation at the next luncheon.
Several things became very clear to me at this appointment. (1) If a respected specialist in his field can't explain why our son is the way his is, why should I allow myself to become frustrated and sad when I don't have the answers. (2) Our son is a unique and amazing individual made in love, with love, and for love. As his doctor stated, "He's just the nicest kid. I bet everyone just loves him." Yes. They really do doc. (3) We need to give ourselves credit for what we have accomplished with our son. We've asked questions, researched, advocated, and challenged. He continues to make progress though the challenge of drooling and stuttering and the inability to speak. He perseveres and feels good about himself and who he is as a person. That's a lot to celebrate. Finally, we don't have the answers but I see God in every step of this journey. He has been there from the beginning. Why do we experience bursts of development through the deepest of regressions? Because God knows I need the light. He knows I need to see a sign that things will get better, will improve, will change. It's His gift to me. It's a gift to us all. Our son is a gift. If you've met him, you know what I mean.
Our son's specialist is an award winning pediatric neurologist who is doing some cutting edge research in genetics and its impact on kids with developmental issues and autism spectrum disorders. He's been in our son's life since he was two years old. We are all very comfortable with him and his opinions. Even better, he's a really great guy who loves his kids and sees them as individuals, not a disorder to be treated.
As he typically does before coming in to meet with us, the doctor reviewed our son's file and any documents that we had brought along for his benefit. These generally include feedback from his teaching team, the most recent Individualized Education Plan (IEP), recent therapy case notes, recent testing assessments, and a couple parent surveys he has us complete prior to the appointment. With that information fresh in his mind, he comes in and generally gets a feel for how we are feeling about our son's progress. From there, he does a neurological exam, a physical exam, and generally just interacts with our son to see for himself how he is progressing. We never feel rushed by him or like we are taking up too much time. After the exam, we generally ask questions and he reviews the options for changes that we may or may not want to make for our son's treatment.
I hope you're getting a sense of how thorough and invested this man is in what he does. It's important that you understand that before I continue with the story...
From the very beginning, our son has been a puzzle that no one can solve. No one can tell us why he is the way his is. They know it is neurologically based but he doesn't fit any syndrome or disorder or "spectrum". A misdiagnosis (with a different neurologist) sent us off on a wild goose chase to the Children's Hospital of Philadelphia with the warning that they were going to need to split our son's skull and insert spacers to allow it to grow properly. I was never so happy in my life to receive a misdiagnosis! Fortunately, that surgery was not required. At times, it feels as if we have been to every department and met every specialist at Geisinger Medical Center as we've searched for answers.
Somewhere along the way, we've learned to trust our instincts and began to openly advocate for what we wanted for our son. It has made a world of difference in his treatment and in his development. At our most recent specialist appointment, we again brought up our son's strange developmental cycle that always seems to involve a simultaneous regression in his speech; an increase in his drooling and clumsiness; and an amazing increase in developmental skills or abilities. Those within our circle of friends and family can attest to the fact that this pattern has been a consistent part of his development from early on. When we again brought this up to his doctor and mentioned the current severity of his blocking and stuttering, paired with the amazing burst of development, his answer surprised us. But only a little.
When an award winning doctor looks you in the eye and says "I don't know why this happens. I'm not experienced with this.", it's a little shocking. Apparently in his experience, a regression in development tends to be universal. He feels it is quite unusual for a child to experience a significant regression and also experience significant bursts of development in other areas. He can't explain why this is happening because he hasn't experienced this before. Several specialists in this field meet regularly to eat, chat, and discuss unique or unusual cases and get feedback from their peers. Our doctor promised to bring up our son's situation at the next luncheon.
Several things became very clear to me at this appointment. (1) If a respected specialist in his field can't explain why our son is the way his is, why should I allow myself to become frustrated and sad when I don't have the answers. (2) Our son is a unique and amazing individual made in love, with love, and for love. As his doctor stated, "He's just the nicest kid. I bet everyone just loves him." Yes. They really do doc. (3) We need to give ourselves credit for what we have accomplished with our son. We've asked questions, researched, advocated, and challenged. He continues to make progress though the challenge of drooling and stuttering and the inability to speak. He perseveres and feels good about himself and who he is as a person. That's a lot to celebrate. Finally, we don't have the answers but I see God in every step of this journey. He has been there from the beginning. Why do we experience bursts of development through the deepest of regressions? Because God knows I need the light. He knows I need to see a sign that things will get better, will improve, will change. It's His gift to me. It's a gift to us all. Our son is a gift. If you've met him, you know what I mean.
Monday, January 5, 2015
New Year Resolutions
I'm not really one for making resolutions for the new year. If I see a problem, I attempt to resolve it. By nature, I'm a "fixer". I don't like chaos or disorder or uncertainty. Knowing my tendency to attempt to control chaotic events in my life, I sometimes think God looks down and says, "Oh daughter, when will you learn to give it to me completely. I've got this." Because I refuse to learn the lesson, it keeps being taught. Like a petulant child, I want to stomp my foot and scream "But I hate this lesson!"
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will. His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me. Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up. I know that given time and diligence, these new issues will resolve themselves. They always do. Yet, I feel anxious. Worried. Scared.
Over the last week or so, his stuttering has reached the worst level I've ever seen it. He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out. It is at its worst when he's tired. He doesn't seem to get frustrated or angry. It doesn't stop him from trying to express himself. But it worries me. I don't know why it's suddenly so bad. What triggers it? Why does it come and go indiscriminately? How will it impact him socially? Will it make him a target at school? Will it affect his self image and confidence? Will he ever out grow this?
I have to have faith. I have to believe and put it in the Lord's hands. I know that. I also know that when his language skills regress, other skills are developing and improving. It's his pattern. It's his normal cycle of abnormal development. Lately, we've seen an increase in his ability to delay gratification. When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time. This was previously absolutely impossible. He had no impulse control to delay that urge to meet his needs. He has recently had an increased social awareness of the impact of his behavior on himself and his peers. It is still a skill in development but it is a step in the right direction. Previously, he had no recognition that his behavior/choices had an impact on others. His math skills have progressed in a positive direction. He seems to have an increasing awareness of numbers and the relationship between them. His number sense was limited until recently.
As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential. As a child of God, I need to trust that the Lord has this. He will see us through whatever stumbling blocks are thrown in our way. As my son's primary cheerleader, I need to celebrate his new skills and accomplishments. I need to keep him working towards becoming the best HIM that he can possibly be. My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind. There is a bigger plan than I can see or imagine. We will get there together some day. I pray that I've learned to relax and enjoy the journey somewhere along the way. I guess that wouldn't be a bad resolution to make.
Friday, November 7, 2014
Why?
From the very beginning, the purpose of this blog was to communicate and interact with other parents who may have experienced similar journeys with their children and to open a dialogue with those who have not. In order to do this effectively, I have tried to be as brutally honest and open about our life and our experiences as I could be. I've tried to balance our privacy and my child's dignity with the need to help others who are struggling with experiences we have already survived. It has been a cathartic experience to share the joy, fear, frustration, and hurt of this journey. Having a child that is "only mildly special", who tests at the bottom level of average or the top level of below average, always slightly different from those around him, yet normal enough, is a blessing and a curse. We are grateful for his "mildness" but there is also frustration that comes with this "mildness". Fighting for services. Fighting to get people to see how bright and talented he really is. Fighting people to not count him out and sign him off as not quite normal, but close enough. Fighting to make others want to help him meet his true potential. There is also that ever present question. Why? Why him? Why us? WHY?!?!
That question has probably been my greatest personal struggle through our journey. Why does this beautiful, smiling, bubbly kid have to work so hard for EVERYTHING? Why does he have to live trapped in a body that won't let him show everyone who he really is? Why do I have to stand by and watch him be hurt by other kids who don't understand why he is the way he is? They don't understand why he gets food all over himself when he eats; why he falls and hurts himself on the playground all the time; why he stutters and drools and can't get the words out; or why he stands too close and stares? Why does he have to take his anger and frustration out on us when he melts down? Why can't I learn not to take it personally? I know it's not about me. Why do I let it hurt so much?
For a long time, I didn't have the answers. I couldn't begin to understand why God would let this happen to us. Our family was so normal. We were doing everything "the right way". It just seemed so unfair. I was hurt and angry. At God. At my husband. At myself. And as hard as it is to admit, at my son. It's a shameful thing to have to admit that but I promised myself I would always be honest with our experiences and our journey.
Over the years, people would tell me things like "God will never give you more than you can handle." Yeah, right. "If God leads you to it, he'll lead you through it." I wish he would lead me a little faster. "All things will be answered in God's time." or "God has a plan." On an intellectual level, I heard and understood what they were saying. On an emotional level, I just couldn't buy into it. I have believed in God my whole life. My faith is a solid part of who I am. I'm not a Christian because my parents raised me in the church, although that probably didn't hurt. I'm a Christian because my faith in God has gotten me through some extremely challenging times in my life. Some of my earliest memories involve me praying and asking God to help me, to protect me, to see me through. He always has. Always. This was the first time in my life that I couldn't see Him clearly. One challenge has seemed to lead to another, to another, and to another. There have been definite blessings along the way. I have no doubt of that. I just couldn't wrap my head around the "WHY?" of it all.
Recently, God has started to open my eyes. He has started to answer some of the "whys". I teach court committed female juvenile offenders. I've been doing this job since 1998. They have always been "my girls". I truly love them all (even when I want to kick them in the pants). Last year, I was almost at my breaking point. It was the closest I have ever been to throwing in the towel and saying "It's too much. I can't do this anymore." Our population was probably the most aggressive I have ever worked with at this level of corrections. They were angry and irrational and physically aggressive to an extreme level. I felt as if I were babysitting instead of teaching. I questioned if anyone was learning anything at all. Unknown to me, God was laying a foundation. He was putting a plan in place. Relationships were being built. I was being prepared.
When we started this new school year and they reviewed the roster with us, I wanted to walk out the door and not turn back. Our usual population is typically made up of girls who are significantly behind in their credits; tremendously behind in their math and reading levels; and carrying a boat load of personal issues mostly due to abuse and neglect. This year, we were also going to have a girl with mental retardation and a seizure disorder (who was not a native English language learner). In addition, we were going to have two autistic girls, one of which we had had previously and was known to be aggressive. There was also a large number of older girls and girls with psychiatric issues. Besides teaching, as the lead teacher, it is my responsibility to track their credits; contact their home guidance counselors; and convince everyone that they could/should earn a high school diploma. The larger our population of older girls, the more my workload increases. All I could think was how am I going to manage this and my son. I was feeling very overwhelmed.
God has a way of providing the answers even when we think they aren't there to be found. What I didn't know is that my girl with mental retardation would be the sweetest little miss on the planet. I get to start every work day with a hug. I get to end every workday with a hug and an "I love you Miss." She has the EXACT same stuttering/disfluency pattern as my son. Without my son and his stuttering and speech therapy sessions, I wouldn't have known what to do and what NOT to do to help her work through those challenging blocks. What I didn't know is that my big angry autistic girl flies into rages because she is overwhelmed and frustrated and doesn't know how to get it out. If I hadn't had my son, I wouldn't know to watch for the signs that she is getting overstimulated or that her frustration level is building. I wouldn't know the tricks to help her calm herself down before she reaches an explosion. What I didn't know is that my other autistic girl wants relationships but is socially inept and doesn't know how to make those connections. She doesn't know how to read other people's body language. She doesn't understand that her behavior is having a negative effect on someone else. Without my son in my life, I wouldn't recognize her struggles or know what to say and do to help coach her through those times.
What I didn't know, is that God was going to prepare me to be a better teacher by forcing me to be a better mom. Because of my son, it is in the back of my head, every single day, that that is someone's child. This was a child that someone gave birth to, had hopes for, had dreams for. Somewhere in their journey, something went wrong. But by their journey taking a wrong turn, God brought them to me. What I didn't know is that He has been preparing me. In the times when I have felt alone and scared, he was preparing me. When I thought I couldn't take another day, he was preparing me. I'm not alone. He's preparing me still.
If I'm honest, I wouldn't have chosen this path. I wanted a boring life. A stable uncomplicated life. I wanted to teach elementary school, get married, and have two kids. God had a different plan in mind. Instead, I fell in love with teaching juvenile offenders. I got married and had those two children but it hasn't been boring. Or uncomplicated. That's okay. I'm starting to see that there's a plan, even if I don't necessarily like the plan. I need to have faith and trust that He will bring me through it. I still hate the clichés but I'm beginning to see that they are true. (I hate it when that happens.)
That question has probably been my greatest personal struggle through our journey. Why does this beautiful, smiling, bubbly kid have to work so hard for EVERYTHING? Why does he have to live trapped in a body that won't let him show everyone who he really is? Why do I have to stand by and watch him be hurt by other kids who don't understand why he is the way he is? They don't understand why he gets food all over himself when he eats; why he falls and hurts himself on the playground all the time; why he stutters and drools and can't get the words out; or why he stands too close and stares? Why does he have to take his anger and frustration out on us when he melts down? Why can't I learn not to take it personally? I know it's not about me. Why do I let it hurt so much?
For a long time, I didn't have the answers. I couldn't begin to understand why God would let this happen to us. Our family was so normal. We were doing everything "the right way". It just seemed so unfair. I was hurt and angry. At God. At my husband. At myself. And as hard as it is to admit, at my son. It's a shameful thing to have to admit that but I promised myself I would always be honest with our experiences and our journey.
Over the years, people would tell me things like "God will never give you more than you can handle." Yeah, right. "If God leads you to it, he'll lead you through it." I wish he would lead me a little faster. "All things will be answered in God's time." or "God has a plan." On an intellectual level, I heard and understood what they were saying. On an emotional level, I just couldn't buy into it. I have believed in God my whole life. My faith is a solid part of who I am. I'm not a Christian because my parents raised me in the church, although that probably didn't hurt. I'm a Christian because my faith in God has gotten me through some extremely challenging times in my life. Some of my earliest memories involve me praying and asking God to help me, to protect me, to see me through. He always has. Always. This was the first time in my life that I couldn't see Him clearly. One challenge has seemed to lead to another, to another, and to another. There have been definite blessings along the way. I have no doubt of that. I just couldn't wrap my head around the "WHY?" of it all.
Recently, God has started to open my eyes. He has started to answer some of the "whys". I teach court committed female juvenile offenders. I've been doing this job since 1998. They have always been "my girls". I truly love them all (even when I want to kick them in the pants). Last year, I was almost at my breaking point. It was the closest I have ever been to throwing in the towel and saying "It's too much. I can't do this anymore." Our population was probably the most aggressive I have ever worked with at this level of corrections. They were angry and irrational and physically aggressive to an extreme level. I felt as if I were babysitting instead of teaching. I questioned if anyone was learning anything at all. Unknown to me, God was laying a foundation. He was putting a plan in place. Relationships were being built. I was being prepared.
When we started this new school year and they reviewed the roster with us, I wanted to walk out the door and not turn back. Our usual population is typically made up of girls who are significantly behind in their credits; tremendously behind in their math and reading levels; and carrying a boat load of personal issues mostly due to abuse and neglect. This year, we were also going to have a girl with mental retardation and a seizure disorder (who was not a native English language learner). In addition, we were going to have two autistic girls, one of which we had had previously and was known to be aggressive. There was also a large number of older girls and girls with psychiatric issues. Besides teaching, as the lead teacher, it is my responsibility to track their credits; contact their home guidance counselors; and convince everyone that they could/should earn a high school diploma. The larger our population of older girls, the more my workload increases. All I could think was how am I going to manage this and my son. I was feeling very overwhelmed.
God has a way of providing the answers even when we think they aren't there to be found. What I didn't know is that my girl with mental retardation would be the sweetest little miss on the planet. I get to start every work day with a hug. I get to end every workday with a hug and an "I love you Miss." She has the EXACT same stuttering/disfluency pattern as my son. Without my son and his stuttering and speech therapy sessions, I wouldn't have known what to do and what NOT to do to help her work through those challenging blocks. What I didn't know is that my big angry autistic girl flies into rages because she is overwhelmed and frustrated and doesn't know how to get it out. If I hadn't had my son, I wouldn't know to watch for the signs that she is getting overstimulated or that her frustration level is building. I wouldn't know the tricks to help her calm herself down before she reaches an explosion. What I didn't know is that my other autistic girl wants relationships but is socially inept and doesn't know how to make those connections. She doesn't know how to read other people's body language. She doesn't understand that her behavior is having a negative effect on someone else. Without my son in my life, I wouldn't recognize her struggles or know what to say and do to help coach her through those times.
What I didn't know, is that God was going to prepare me to be a better teacher by forcing me to be a better mom. Because of my son, it is in the back of my head, every single day, that that is someone's child. This was a child that someone gave birth to, had hopes for, had dreams for. Somewhere in their journey, something went wrong. But by their journey taking a wrong turn, God brought them to me. What I didn't know is that He has been preparing me. In the times when I have felt alone and scared, he was preparing me. When I thought I couldn't take another day, he was preparing me. I'm not alone. He's preparing me still.
If I'm honest, I wouldn't have chosen this path. I wanted a boring life. A stable uncomplicated life. I wanted to teach elementary school, get married, and have two kids. God had a different plan in mind. Instead, I fell in love with teaching juvenile offenders. I got married and had those two children but it hasn't been boring. Or uncomplicated. That's okay. I'm starting to see that there's a plan, even if I don't necessarily like the plan. I need to have faith and trust that He will bring me through it. I still hate the clichés but I'm beginning to see that they are true. (I hate it when that happens.)
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