We were given an assignment for Sharon's English class. We were in a unit learning about braille. We were talking about how braille is what blind people use to read. We met a young lady that had learned from the braille system but uses better technology now for most things.Then we got to Fanny Crosby. Fanny was diagnosed blind at 6 weeks old. There is speculation that she was born that way. Her parents believed it was due to a fever. she had written over 9,000 poems and lyrics for songs in her lifetime. Our assignment was to pick our favorite hymn.
This assignment was easy for Sharon. She loves music. I let her listen to a few. However, I knew her favorite was "To God be the Glory". Fanny had a unique prospective on her blindness. It was the reason that they chose her for this particular unit. She viewed he blindness as a gift. As young as 8 years old she had wrote about the joy of her first sight being her Savior. She also was pretty sure she would be distracted by all the worldly beauty if not for her blindness. Her fear in this was that she would of lost her ability to write efficiently. She was meant for this purpose in her mind. She wouldn't have changed it. It is what caused her great joy in her life. She knew whatGrace was given to her and why.
Fanny had struggles in her life. She was blind. It was at the turn of the 20th century. It was not an easy life. Here is the kicker, she had no expectations for one. When one is outfitted with blindness you expect struggle. You expect work. Fanny worked hard all her life for the church. Although she lived comfortably she gave most of her money to support the church, poverty stricken neighborhoods. She had lived in that neighborhood to be of service. Fanny lived a long life of service to the Lord.
A person probably saw her walking down the street of that poor neighborhood. They were probably sad for her. However, knowing what we know Fanny's life was exceptional. It wasn't that she accomplished a lot of things. Her name is on a lot of songs and writings. I am here writing about her today even. It was the sight she had. Fanny had the best vision in life. She didn't look to this place for her comfort. She looked to her Savior. Although we were not given the same Grace as Fanny. Each of us has a different purpose. We can appreciate the ability to be blind to this world and have a clear vision of God's eternal love.
Some of Fanny's work:
https://www.youtube.com/watch?v=ymrZO1PZbU4
https://www.youtube.com/watch?v=CMFM-lpzCC0
https://www.youtube.com/watch?v=h_nIRLD_5gE
https://www.youtube.com/watch?v=BEOtFEs0Jos&list=PLYFFDf-5H3xCqnih72z9wS2Lel_pTkEZW
Most of songs are like this. In complete awe of the wonderful Grace that has been bestowed upon her. Keep in mind while you listen to the music: She was blind, the world was dark to her. Listen and see if you hear any darkness in her heart or words. God Bless.
Kandi, Greg and Girls
Monday, April 27, 2015
Friday, April 17, 2015
Autism, ADHD and the diagnosis
I had promised a post on diagnosis on Autism and ADHD. I am here to make good on that promise. Often times we hear the word Autism pop up and any number of things can pop up. Only one thing is really associated with ADHD and that is the hyperactivity. So much more is involved with both. My version of these things are different from someone else. The reason being is that each kid with these type of disorders are different. They are spectrum disorders. Depending on who the child is they might have different issues surrounding the diagnosis. I'm going to touch on the symptoms that effect my children.
Sharon has Autism. A lot of things spider web off of that. When someone is autistic they might have a wide range of disorders. Sharon has social dysfunction, OCD and speech delay. These are the main reasons for her diagnosis. Underlying these disorders are several others. Sharon has Motor coordination disorder which means that she has a hard time getting her brain to tell her body what to do. Hyperacusis is an acute sense of hearing. She has learning disabilities. She also has muscular dystrophy, another name for low muscle tone. There are several other diagnosis that go along with autism but these are Sharon's issues. Sometimes you have children that cannot speak but do not have social dysfunction. They know how to function in society they are just unable to speak. Sometimes they will not have the OCD. It is not very common but I have seen it. That is one of Sharon's biggest struggles, the OCD. Low muscle tone along with bad motor coordination makes it hard for Sharon. Getting up and off of things is very difficult. Most of her learning difficulties come from motor coordination. She might know it in her brain but she can't get her body to say it or do it. That happens more often than not. She is thinking of a P and writes a D. She will see what a picture is and be thinking about something completely different. So she talks about what she is thinking about. Sharon also thinks in a picture based reality. If she can't picture it in her head she probably does not understand it. Her fall back is her memory which is much better than a normal persons. She files situations away and retrieves them when necessary. It is very difficult to explain something abstract to Sharon. When she gets something though she gets it. Sharon needs time to process things. It is hard because the things that take us milliseconds takes her a minute or so. As someone who is not autistic, I have no understanding of that. I try but it is one of those things that I can't be in her shoes.
Leah is very complicated. There is so much to still figure out about her. She has hyperactivity that is associated with ADHD. With that comes with things that are hard for her to process. Like Sharon it is difficult to process things. Leah is the opposite from Sharon. She is moving too fast to process. Her body is already moving before her brain has processed it. It might be the other way around as well. Her brain has processed something so fast not allowing her body the time to move. Thus, it gives the impression of flightiness. Going to one thing to another without finishing, she has forgotten what she started. Leah also has a hard time with sensory issues. She has textile, food and sound sensory problems. So they would label her as SPD or sensory processing disorder. Some noises can hurt when she hears them. Jeans hurt her when she wears them. She does not like certain shirts. She is extremely ticklish. She is very picky about her food. We have a hard time feeding her. ADHD comes with anxiety. Why wouldn't it? Everything that you try to do seems to get mucked up. So you get anxious about doing anything. It is important that you praise them for what they do right and diminish what they do wrong. Meaning that we work on bad behavior in a rewarding way. If she is able to not do something she gets a sticker towards something. We only focus on one behavior at a time. For instance, if you can go a day without throwing toys(or backpacks) you get a sticker. Really trying to focus on the one than bring another to the top. It is a slow process. However, We are making slow progress with it. Leah also has her medical condition which is probably our biggest worry. She has ketotic hypoglycemia. It is a condition in which your body doesn't store enough sugar. It starts producing ketones to keep up. Ketones make you sick. It makes it seem like you have the stomach flu except worse. Your blood sugar drops than you can't eat because your throwing up. It is a mess. Luckily we can monitor well now. We know what to look for and an ER just down the street.
One might ask the question: With all this going on how does one function? We should ask that question about a lot of things. It is hard to fathom being blind when you have sight. Being deaf when you can hear. These things are hard to understand. How can someone go through the day in a wheelchair and be happy? I really don't have to search very far to see if my daughters are happy. They are probably the happiest people I know. It isn't because they don't know they have problems. It is because they move past them. Their lives are have no less value than mine. In fact, sometimes I feel as though they are doing more than I have ever done. It is written:
"As He passed by, he saw a man blind from birth. And His disciples asked Him,"Rabbi who sinned, this man or his parents, that he was born blind?" Jesus answered,"It was not that this man sinned, or his parents, but that the works of God might be displayed in him." John9:1-3
I pray that we all of are full of joy. Joy that what our journey brings is so that the works of God might displayed it that path. God Bless.
Sharon has Autism. A lot of things spider web off of that. When someone is autistic they might have a wide range of disorders. Sharon has social dysfunction, OCD and speech delay. These are the main reasons for her diagnosis. Underlying these disorders are several others. Sharon has Motor coordination disorder which means that she has a hard time getting her brain to tell her body what to do. Hyperacusis is an acute sense of hearing. She has learning disabilities. She also has muscular dystrophy, another name for low muscle tone. There are several other diagnosis that go along with autism but these are Sharon's issues. Sometimes you have children that cannot speak but do not have social dysfunction. They know how to function in society they are just unable to speak. Sometimes they will not have the OCD. It is not very common but I have seen it. That is one of Sharon's biggest struggles, the OCD. Low muscle tone along with bad motor coordination makes it hard for Sharon. Getting up and off of things is very difficult. Most of her learning difficulties come from motor coordination. She might know it in her brain but she can't get her body to say it or do it. That happens more often than not. She is thinking of a P and writes a D. She will see what a picture is and be thinking about something completely different. So she talks about what she is thinking about. Sharon also thinks in a picture based reality. If she can't picture it in her head she probably does not understand it. Her fall back is her memory which is much better than a normal persons. She files situations away and retrieves them when necessary. It is very difficult to explain something abstract to Sharon. When she gets something though she gets it. Sharon needs time to process things. It is hard because the things that take us milliseconds takes her a minute or so. As someone who is not autistic, I have no understanding of that. I try but it is one of those things that I can't be in her shoes.
One might ask the question: With all this going on how does one function? We should ask that question about a lot of things. It is hard to fathom being blind when you have sight. Being deaf when you can hear. These things are hard to understand. How can someone go through the day in a wheelchair and be happy? I really don't have to search very far to see if my daughters are happy. They are probably the happiest people I know. It isn't because they don't know they have problems. It is because they move past them. Their lives are have no less value than mine. In fact, sometimes I feel as though they are doing more than I have ever done. It is written:
"As He passed by, he saw a man blind from birth. And His disciples asked Him,"Rabbi who sinned, this man or his parents, that he was born blind?" Jesus answered,"It was not that this man sinned, or his parents, but that the works of God might be displayed in him." John9:1-3
I pray that we all of are full of joy. Joy that what our journey brings is so that the works of God might displayed it that path. God Bless.
Sunday, April 5, 2015
Things I learned as a Special Needs Mom
April is Autism Awareness month as many of you know. I like to take the opportunity in April to dive into some things in our lives. As people who have read my blog know I have two daughters, one autistic, the other ADHD/SPD/Medically at risk. A number of different diagnosis are associated with both. There are reasons why they have two different diagnoses. These two are as opposite as you can get. Leah also has a medical condition,ketotic hypoglycemia. Luckily Sharon is pretty healthy.
One of the things I've had to learn is about their specific problems. In order for me to beneficial at all I had to learn. The regular parenting books were WRONG! I would consistently looking at my book than at Sharon shaking my head. It was like I had repair manual for a Chevy but had a Ford. When Sharon was finally diagnosed, I was able to read the right books. I got on the right track. The same thing happened with Leah. Leah is/was very difficult to keep up with. The notion that they will wear themselves out was not in Leah. The more she goes the more wound up she gets, the faster she goes. Leah does not get cause and affect. What happens now is what she knows. It really does no good to give her a consequence. Unfortunately this is traditionally how you rise a child. You give them consequences, discipline when they don't meet the demand. This is a instinct if parenting. Both girls are very much parented differently than the average child. Why? Because they are not the average child. Ergo, a different method is required. This is a learning process for me. I try to learn as much as a can.
Expecting the unexpected is one of the things you have to combat yourself as a special needs mom. Going to the grocery store was something I thought was normal experience that a mom and child could have. Sharon proved me completely wrong. I would get yogurt, still her favorite snack thing. Her world came crashing down when she realized that we could not eat it right away. She let me and everyone else in the grocery store know that her world was ending. We are not emotionally attached to the same things. Sharon had a love for stop signs for a while. I would not be able to get her to walk past one without trying to clobber it. She is also tackling me as well. She is not small. I call her my little linebacker. She can tip you over. Leah is just unexpectedness herself. I don't know what to expect from her, in the same sense I don't think she does either. It is hard to set expectations when we are not sure how the day is going to go. I have to set perimeters for the day. It is very difficult for Sharon to not know what she is going to do. She is very anxious about what happens next. Leah as well. She needs to know where she is going tomorrow. What is happening next. They very much are not sure of it. I have to go over it with them on a daily basis.
Based on the fact that my girls needed to know where they were at in this world, I did too. I was very much a fly by the seat of my pants person. I couldn't be that with these two. They have to know I have a plan. They have to know that I am in control of the situation. I had to be better than I was. I couldn't continue to not have a plan, a backup plan and plan c. I still wait til the last minute on things. Compared to before Sharon, I'm not even the same person. Literally, I don't even look the same. I was overweight. Even that was not going to fly. Not being able to run after Leah when she did not listen was not an option. I work hard in the gym. It is not to look good. I'm in training.
Many people have told me to worry about their future. I have hope. If a person can connect with another person, love them, there is hope. Life is about relationships. That is what it is about. First establishing a relationship with Christ. Then establishing relationships with people. Every single person on this planet has a purpose. Sometimes it is very hard to see the purpose. However, with children with special needs it can be easy if we open our eyes. They might not have what we perceive as success. In God's eyes He has put them here to do His best work. We are weak. Every single one of us. Some of us are blind to it. A special needs person does not "need" extra grace or extra prayers. Their outward needs are just what we are inwardly. Our reaction to that is why they are extremely important. I have hope.
There is a lot of posts already this month about how people had changed. They are far better people with better view on life because of their children. That is true of a lot of parents not just parents of special needs. We become better when we have children, one would hope. I became part of a whole new community. A community that was mine. I was naive when it came to people with special needs. Scared of them even. Well, I never been scared of Downs because well they are just the best people. It was this, I was charged with two. I have a much better outlook on life. I use to think I knew what success was. I was wrong. Success is when you accomplish something you thought impossible. Success is when you realize who is your reason for success. It is not money or rewards, it is a big smile after a lot of hard work. We have a lot of big smiles because we work hard.
I can't express in a small paragraph what I have learned. I have learned more in 7 years that I have in the previous 27 years. In some ways I feel sad about that. In other ways I am so glad that my daughters have motivated me to change every day. I am glad that I learned more today to be better tomorrow. A lot of the times unless we are motivated we stick with the status quote. I never have the feeling of I want to stay the same anymore. I use to, I use to think I knew it all. My daughter prove to me that I have a lot to learn. They humble me every single day. I am very, very thankful for that.
I use to shake my head when children went off in the store. I work in the store that might be part of it. I just laugh now. I mean that is just stupid if I think about. My children are not well behaved. Why would somebody else have children that behave all the time? I don't expect adults to behave all the time either. We all have bad days and that translates into bad behavior. I try and help adults get into a better mood. I do not judge them by their behavior. If I did that I would have to do that with my daughters. Leah has extremely bad behavior sometimes. I know that she in fact does not want to go to such lengths. She gets very remorseful., when you slow her down. She is so cute though, nobody really cares. Everybody refers to her as an angel. I immediately shake my head. Nobody is an angel in this world and certainly we can be reminded of that. When Sharon just immediately goes to the ground when she doesn't want to leave I don't think anything of it. I just give her options moving forward. When she thinks that it is important to hug a stop sign, I allow that. It doesn't hurt anybody. I will teach her people are more important than stop signs, hug me. Leah is a creature all her own. She will turn into a hulk. I tell her how cute she is when she is mad. I try and make her laugh. Sometimes it is just trying to get her back into the car. Leah acts out all her disappointment. It seems like she is disappointed a lot. Most of the time she is very happy. The thing I learned from my daughters is that if a parent is having a bad store trip just laugh. It is not a big deal, next week will be better.
As a parent of a special needs child I'm blessed. I have been blessed with a unique opportunity to learn more about God and life. God always provides ways to bring us closer to him. Unfortunately, in our condition it is through struggles. Struggles do not have to be defeating. They can be the biggest victories in your life. People look at my girls and say it must be hard. All parenting is hard. There is not a single parent that has an easy job. Mine is different, more challenging but that could be more rewarding too. I became a better wife, friend, worker, mother and communicator because of their issues. I have met people that I wouldn't of met. Some that I will be with us the rest of our lives. I want to say my kids are awesome. They are probably the best people I have met. I am not just saying that because I'm their mother. They truly are amazing. Sharon has a unique way of making you admire her. She enjoys people even though she does not understand them. Leah loves you even though she hasn't met you. She really struggles with anger. However, you can see love so deeply planted that it might win its day. I hope that if you haven't met my children that you get an opportunity to. I also hope you get an opportunity to meet other special needs children. Special needs children are a blessing because they serve to better a community. People say that special needs children do not deserve a chance at life. They say that they will need care for the rest of there lives. However, it is a blessing to care for someone. It is a blessing to be that servant. They serve for people to lift them up. To become leaders to become Christ like. They are important. I am thankful for that blessing.
One of the things I've had to learn is about their specific problems. In order for me to beneficial at all I had to learn. The regular parenting books were WRONG! I would consistently looking at my book than at Sharon shaking my head. It was like I had repair manual for a Chevy but had a Ford. When Sharon was finally diagnosed, I was able to read the right books. I got on the right track. The same thing happened with Leah. Leah is/was very difficult to keep up with. The notion that they will wear themselves out was not in Leah. The more she goes the more wound up she gets, the faster she goes. Leah does not get cause and affect. What happens now is what she knows. It really does no good to give her a consequence. Unfortunately this is traditionally how you rise a child. You give them consequences, discipline when they don't meet the demand. This is a instinct if parenting. Both girls are very much parented differently than the average child. Why? Because they are not the average child. Ergo, a different method is required. This is a learning process for me. I try to learn as much as a can.
Expecting the unexpected is one of the things you have to combat yourself as a special needs mom. Going to the grocery store was something I thought was normal experience that a mom and child could have. Sharon proved me completely wrong. I would get yogurt, still her favorite snack thing. Her world came crashing down when she realized that we could not eat it right away. She let me and everyone else in the grocery store know that her world was ending. We are not emotionally attached to the same things. Sharon had a love for stop signs for a while. I would not be able to get her to walk past one without trying to clobber it. She is also tackling me as well. She is not small. I call her my little linebacker. She can tip you over. Leah is just unexpectedness herself. I don't know what to expect from her, in the same sense I don't think she does either. It is hard to set expectations when we are not sure how the day is going to go. I have to set perimeters for the day. It is very difficult for Sharon to not know what she is going to do. She is very anxious about what happens next. Leah as well. She needs to know where she is going tomorrow. What is happening next. They very much are not sure of it. I have to go over it with them on a daily basis.
Based on the fact that my girls needed to know where they were at in this world, I did too. I was very much a fly by the seat of my pants person. I couldn't be that with these two. They have to know I have a plan. They have to know that I am in control of the situation. I had to be better than I was. I couldn't continue to not have a plan, a backup plan and plan c. I still wait til the last minute on things. Compared to before Sharon, I'm not even the same person. Literally, I don't even look the same. I was overweight. Even that was not going to fly. Not being able to run after Leah when she did not listen was not an option. I work hard in the gym. It is not to look good. I'm in training.
Many people have told me to worry about their future. I have hope. If a person can connect with another person, love them, there is hope. Life is about relationships. That is what it is about. First establishing a relationship with Christ. Then establishing relationships with people. Every single person on this planet has a purpose. Sometimes it is very hard to see the purpose. However, with children with special needs it can be easy if we open our eyes. They might not have what we perceive as success. In God's eyes He has put them here to do His best work. We are weak. Every single one of us. Some of us are blind to it. A special needs person does not "need" extra grace or extra prayers. Their outward needs are just what we are inwardly. Our reaction to that is why they are extremely important. I have hope.
There is a lot of posts already this month about how people had changed. They are far better people with better view on life because of their children. That is true of a lot of parents not just parents of special needs. We become better when we have children, one would hope. I became part of a whole new community. A community that was mine. I was naive when it came to people with special needs. Scared of them even. Well, I never been scared of Downs because well they are just the best people. It was this, I was charged with two. I have a much better outlook on life. I use to think I knew what success was. I was wrong. Success is when you accomplish something you thought impossible. Success is when you realize who is your reason for success. It is not money or rewards, it is a big smile after a lot of hard work. We have a lot of big smiles because we work hard.
I can't express in a small paragraph what I have learned. I have learned more in 7 years that I have in the previous 27 years. In some ways I feel sad about that. In other ways I am so glad that my daughters have motivated me to change every day. I am glad that I learned more today to be better tomorrow. A lot of the times unless we are motivated we stick with the status quote. I never have the feeling of I want to stay the same anymore. I use to, I use to think I knew it all. My daughter prove to me that I have a lot to learn. They humble me every single day. I am very, very thankful for that.
I use to shake my head when children went off in the store. I work in the store that might be part of it. I just laugh now. I mean that is just stupid if I think about. My children are not well behaved. Why would somebody else have children that behave all the time? I don't expect adults to behave all the time either. We all have bad days and that translates into bad behavior. I try and help adults get into a better mood. I do not judge them by their behavior. If I did that I would have to do that with my daughters. Leah has extremely bad behavior sometimes. I know that she in fact does not want to go to such lengths. She gets very remorseful., when you slow her down. She is so cute though, nobody really cares. Everybody refers to her as an angel. I immediately shake my head. Nobody is an angel in this world and certainly we can be reminded of that. When Sharon just immediately goes to the ground when she doesn't want to leave I don't think anything of it. I just give her options moving forward. When she thinks that it is important to hug a stop sign, I allow that. It doesn't hurt anybody. I will teach her people are more important than stop signs, hug me. Leah is a creature all her own. She will turn into a hulk. I tell her how cute she is when she is mad. I try and make her laugh. Sometimes it is just trying to get her back into the car. Leah acts out all her disappointment. It seems like she is disappointed a lot. Most of the time she is very happy. The thing I learned from my daughters is that if a parent is having a bad store trip just laugh. It is not a big deal, next week will be better.
As a parent of a special needs child I'm blessed. I have been blessed with a unique opportunity to learn more about God and life. God always provides ways to bring us closer to him. Unfortunately, in our condition it is through struggles. Struggles do not have to be defeating. They can be the biggest victories in your life. People look at my girls and say it must be hard. All parenting is hard. There is not a single parent that has an easy job. Mine is different, more challenging but that could be more rewarding too. I became a better wife, friend, worker, mother and communicator because of their issues. I have met people that I wouldn't of met. Some that I will be with us the rest of our lives. I want to say my kids are awesome. They are probably the best people I have met. I am not just saying that because I'm their mother. They truly are amazing. Sharon has a unique way of making you admire her. She enjoys people even though she does not understand them. Leah loves you even though she hasn't met you. She really struggles with anger. However, you can see love so deeply planted that it might win its day. I hope that if you haven't met my children that you get an opportunity to. I also hope you get an opportunity to meet other special needs children. Special needs children are a blessing because they serve to better a community. People say that special needs children do not deserve a chance at life. They say that they will need care for the rest of there lives. However, it is a blessing to care for someone. It is a blessing to be that servant. They serve for people to lift them up. To become leaders to become Christ like. They are important. I am thankful for that blessing.
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