It is the end of April. I had been trying to get occupational therapy for Sharon. It has been nearly a year long journey. A fight that I continue to battle. We have no short of them as a family of a special needs child(ren). In doing so we had genetic testing done on Sharon. The results were expected. Genetically she is Autistic.
Nearly everyone is born with two of each chromosome. Sharon's #11 is missing a half of one on a set. This contains 28 genes that help the brain do a variety of tasks. These are consistent with autism. This area is absolutely fascinating to me. Genes, Chromosomes, DNA this is what makes people individuals. If everybody had a genetic test done the results would be different. There might be the same traits here and there. However, there would not be an exact match. That was in God's plan.
He has a recipe for each person. He has a plan for each person. This is what He had for Sharon. It was not a mistake. It was not something that the world created. When she was put together she had different ingredients. I was not saddened that she was missing these genes. Sharon was Sharon when she was born. I do not think that it makes her less. Like she is not whole. In all reality we all have something that is left out. Some of us have a little extra. I am absolutely fascinated by the workings of God.
I do not deny that she has extra challenges. I would like to meet a person who does not have challenges. I believe that person does not exist or is lying to themselves. It is important what we do with the challenges that we face in this world. What are we going to do with them? If you try and get rid of one another one will pop up. This life is rough no doubt. We live in a fallen world that is filled with sin. As I stated previously this month the biggest challenge as parents is not the autism. It is not things in this world. It is the sinful nature within their hearts.
In this world She is Autistic and has a genetic defect. Pretty heavy labels are they not? Only God knows what He has for her. So far He has done so much in her life. He has done so much with her life. She is different. If God made the same recipe over and over again we would have a pretty boring place. That is why He made everybody special for His own Glory.
Kandi, Greg and Girls
Wednesday, April 30, 2014
Wednesday, April 23, 2014
What Shall I fear? HELLO! Everything!
This is part 3 and (you're welcome)my final autism awareness post. I had said what shall I fear? in my last post. I also wrote "We wrap our kids in bubble wrap". I, my friends am no different. Hence, the use of the word we. I will tell you some of the things that I fear in this post.
My house is like Fort Knox. If you haven't been to my house prior it will take at least 5-10 minutes to get out unassisted. Not that I want to hold people hostage. I want to keep my kids safe. They would have no problem going outside without me. My children are 6 and 4. This would not be a big deal if not for their many challenges. One being impulse control there is next to zero for both. Sharon is better she has certain guidelines she follows because that is a script. She loves scripts. Leah on the other hand lives for now. If it is not now we don't worry about it. I live by two busy roads. They could easy go out on the road. Sharon would stop look both ways, however, not when running. When running it is a free for all. Leah is into whatever she is into if it is across the street than she will go after it. She would not pay any mind to the cars or the danger of crossing the street. She is all about obtaining desired object. Sharon and Leah have no concept of their own safety. When you have that supervision is required at all times. Also Leah thinks every single person on the planet is "her" friend. Would not have any problem taking off with any one. Luckily, Sharon likes to run from people. Communication is even worse as one is extremely distracted. They both have issues with that. Also they both love water. Would not have no problem jumping into a body of water. I fear Sharon and Leah getting out by themselves.
I do not like parking lots. I loath them. I nearly have an anxiety attack when I have to trek across one with Sharon and Leah. I had an instance where I had to go quite a ways to the car. I had things in my hands. I had a hold of both girls. We have a sticker they put there hand on until I get the door open. That day I had a problem. There was a puddle in the middle of the parking lot. Leah's hand did not stay on the sticker. She darted off to the middle of the parking lot. I had to leave Sharon whom loves water too to get Leah. Luckily Sharon stayed put. I fear parking lots.
My biggest problem with Sharon is open spaces or fields. She starts running with no regard to reality. It makes it quite difficult to enjoy going to a park. If it is near a soccer field or an open field she is off and running. I would have to chase after her. Which leaves Leah the fearless alone on the equipment. Who would have no problem jumping of the very top with her small frame. Trying to keep them both in the actual park is a challenge. I fear parks.
I get frustrated. Imagine waking up in the morning knowing that your day is not going to go right. That when you ask your child to get dressed they will shake their head at you. They run in the other direction. This mind you does not happen once a week, or every once in a while. It is everyday. You tell them to come to the table. You end up chasing someone down, again everyday. They hit you, push you, kick you and slap at you again everyday. Then it is breakfast time. The battle has just begun. I end up being very frustrated after a few hours. I don't like being frustrated like that.
Now that I told you what I fear. I will tell you what I avoid out of these things. None. I go outside with Sharon and Leah knowing that it will be difficult to handle them. I have to take them in parking lots. If I plan on going to a store or anywhere else. We still go in open fields I just plan on getting exercise. I usually tell Leah to sit. Generally, I have enough time to grab Sharon and get back to Leah. I also can't avoid getting frustrated. When somebody is constantly doing the opposite of what you wanted them to do it happens. In general I fear the death of my children. That about sums it up.
I can let my fears consume me. It can be the only thing I think about. However, I do not visit them often. It can be overwhelming thinking about every single thing. I am only using some examples to explain that yes I do have fears. I am not going to change my whole lifestyle based on the fear of death either. Quite frankly who is really in control? I have to ask that nearly everyday when my childrens' lives are in danger. Does not God have dominion of this world. Do I think anything is bigger than Him? Sometimes it is very difficult to answer no but that is the answer. Somethings are out of my control. It is time to pray. It does not do any good to constantly be upset when things that are politically not lining up. That this world is corrupt. I believe there was mention of that in a book somewhere. That is something that is always going to be there. What I can control is knowing that Christ has the final say in this world. I am going to keep my kids safe. That is what Christ would have me do. Christ would not have me obsess about that idea. I have to ask myself am I obsessing about what they are eating? Am I obsessing over a certain behavior? Am I obsessing over the fact that I was a good mother today? Most of the time we do obsess don't we. The fact remains that Christ will be there. That when it is all said and done our children are His. We care for them but they are in His hands. Let us as parents think about that when we hold them back completely based on our fears.
My house is like Fort Knox. If you haven't been to my house prior it will take at least 5-10 minutes to get out unassisted. Not that I want to hold people hostage. I want to keep my kids safe. They would have no problem going outside without me. My children are 6 and 4. This would not be a big deal if not for their many challenges. One being impulse control there is next to zero for both. Sharon is better she has certain guidelines she follows because that is a script. She loves scripts. Leah on the other hand lives for now. If it is not now we don't worry about it. I live by two busy roads. They could easy go out on the road. Sharon would stop look both ways, however, not when running. When running it is a free for all. Leah is into whatever she is into if it is across the street than she will go after it. She would not pay any mind to the cars or the danger of crossing the street. She is all about obtaining desired object. Sharon and Leah have no concept of their own safety. When you have that supervision is required at all times. Also Leah thinks every single person on the planet is "her" friend. Would not have any problem taking off with any one. Luckily, Sharon likes to run from people. Communication is even worse as one is extremely distracted. They both have issues with that. Also they both love water. Would not have no problem jumping into a body of water. I fear Sharon and Leah getting out by themselves.
I do not like parking lots. I loath them. I nearly have an anxiety attack when I have to trek across one with Sharon and Leah. I had an instance where I had to go quite a ways to the car. I had things in my hands. I had a hold of both girls. We have a sticker they put there hand on until I get the door open. That day I had a problem. There was a puddle in the middle of the parking lot. Leah's hand did not stay on the sticker. She darted off to the middle of the parking lot. I had to leave Sharon whom loves water too to get Leah. Luckily Sharon stayed put. I fear parking lots.
My biggest problem with Sharon is open spaces or fields. She starts running with no regard to reality. It makes it quite difficult to enjoy going to a park. If it is near a soccer field or an open field she is off and running. I would have to chase after her. Which leaves Leah the fearless alone on the equipment. Who would have no problem jumping of the very top with her small frame. Trying to keep them both in the actual park is a challenge. I fear parks.
I get frustrated. Imagine waking up in the morning knowing that your day is not going to go right. That when you ask your child to get dressed they will shake their head at you. They run in the other direction. This mind you does not happen once a week, or every once in a while. It is everyday. You tell them to come to the table. You end up chasing someone down, again everyday. They hit you, push you, kick you and slap at you again everyday. Then it is breakfast time. The battle has just begun. I end up being very frustrated after a few hours. I don't like being frustrated like that.
Now that I told you what I fear. I will tell you what I avoid out of these things. None. I go outside with Sharon and Leah knowing that it will be difficult to handle them. I have to take them in parking lots. If I plan on going to a store or anywhere else. We still go in open fields I just plan on getting exercise. I usually tell Leah to sit. Generally, I have enough time to grab Sharon and get back to Leah. I also can't avoid getting frustrated. When somebody is constantly doing the opposite of what you wanted them to do it happens. In general I fear the death of my children. That about sums it up.
I can let my fears consume me. It can be the only thing I think about. However, I do not visit them often. It can be overwhelming thinking about every single thing. I am only using some examples to explain that yes I do have fears. I am not going to change my whole lifestyle based on the fear of death either. Quite frankly who is really in control? I have to ask that nearly everyday when my childrens' lives are in danger. Does not God have dominion of this world. Do I think anything is bigger than Him? Sometimes it is very difficult to answer no but that is the answer. Somethings are out of my control. It is time to pray. It does not do any good to constantly be upset when things that are politically not lining up. That this world is corrupt. I believe there was mention of that in a book somewhere. That is something that is always going to be there. What I can control is knowing that Christ has the final say in this world. I am going to keep my kids safe. That is what Christ would have me do. Christ would not have me obsess about that idea. I have to ask myself am I obsessing about what they are eating? Am I obsessing over a certain behavior? Am I obsessing over the fact that I was a good mother today? Most of the time we do obsess don't we. The fact remains that Christ will be there. That when it is all said and done our children are His. We care for them but they are in His hands. Let us as parents think about that when we hold them back completely based on our fears.
Tuesday, April 15, 2014
Light on Leah's light
Leah has ADHD. She also has sensory processing issues. We, however, were missing a key. Communication. We can't communicate to this child. We tried numerous ways to try to get her to understand something. It is to no progress. It is very frustrating to say the least. She is tired of trying to understand what we want. In her own way she was trying to communicate to us with bad behavior. We tried to discipline the bad behavior but again the communication was not getting through.
I had been to the Neuropsychologist several times in the past. We decided to evaluate her for a proper diagnosis. Of course the ADHD, and sensory processing is apparent. The thing that we were looking for was the learning portion of it. What process is getting mixed up. We figured out that non-verbally Leah's language is great. She can identify pictures tell you what they are. She can put things in categories. However, when doing the verbal portion she was not able to perform the same tasks. We ask her the same questions without the pictures. Even though it was the same sequence of problem solving she was unable to answer. She came up with different things to say. She said she was all done doing the testing. It was very difficult for her. There was our problem. That was the key we were missing.
Here is the puzzler that got us twisted up. Leah verbally is fine she can talk up a storm. Tell you exactly how she is feeling. Tell you what she wants. We noticed she has trouble finding labels for things. Where as Sharon in all aspects, Leah just has verbal receptive problems. We know what it is like to have a kiddo that doesn't communicate very well. That wasn't Leah. So we got mixed up in the process too. She is having trouble with communicating just in a different aspect.
So full circle here. You have a kid who has impulse control issues that also has trouble taking verbal cues. All we have been giving her is verbal cues. We have been wondering why we are so frustrated. Why does it seem like she doesn't get it. It is because she doesn't get it. Now I know where I'm going. I know what we can do from here. Leah is very intelligent. She has different needs than Sharon. Leah is also somebody who is very special in her own way. Even today a downs syndrome child came up to Leah today. She said hi to Leah, then said "Hug" and of course Leah never denies anyone a hug and they hugged. The mother was apologetic. I said we were fine with hugs. I love, love that about Leah. I love her happiness at just about anything. I wouldn't change her for the world. I want to help her be able to understand me better. I want to keep her safe. After all I'm a mother and that is what all mothers want.
I'm just diving into the things that Leah needs. Much like the start of where Sharon was about three years ago I'm wet behind the ears. I am getting to know some things about her. Sharon and Leah are labeled as such and such. It just not define them. However, it helps us find their strengths to navigate this world better. I mean strengths. I am not going to go through their life saying they can't do this because of their label. They will not be able to do certain things that is just a fact. I will always be there to say you can do this and do it well.
I had been to the Neuropsychologist several times in the past. We decided to evaluate her for a proper diagnosis. Of course the ADHD, and sensory processing is apparent. The thing that we were looking for was the learning portion of it. What process is getting mixed up. We figured out that non-verbally Leah's language is great. She can identify pictures tell you what they are. She can put things in categories. However, when doing the verbal portion she was not able to perform the same tasks. We ask her the same questions without the pictures. Even though it was the same sequence of problem solving she was unable to answer. She came up with different things to say. She said she was all done doing the testing. It was very difficult for her. There was our problem. That was the key we were missing.
Here is the puzzler that got us twisted up. Leah verbally is fine she can talk up a storm. Tell you exactly how she is feeling. Tell you what she wants. We noticed she has trouble finding labels for things. Where as Sharon in all aspects, Leah just has verbal receptive problems. We know what it is like to have a kiddo that doesn't communicate very well. That wasn't Leah. So we got mixed up in the process too. She is having trouble with communicating just in a different aspect.
So full circle here. You have a kid who has impulse control issues that also has trouble taking verbal cues. All we have been giving her is verbal cues. We have been wondering why we are so frustrated. Why does it seem like she doesn't get it. It is because she doesn't get it. Now I know where I'm going. I know what we can do from here. Leah is very intelligent. She has different needs than Sharon. Leah is also somebody who is very special in her own way. Even today a downs syndrome child came up to Leah today. She said hi to Leah, then said "Hug" and of course Leah never denies anyone a hug and they hugged. The mother was apologetic. I said we were fine with hugs. I love, love that about Leah. I love her happiness at just about anything. I wouldn't change her for the world. I want to help her be able to understand me better. I want to keep her safe. After all I'm a mother and that is what all mothers want.
I'm just diving into the things that Leah needs. Much like the start of where Sharon was about three years ago I'm wet behind the ears. I am getting to know some things about her. Sharon and Leah are labeled as such and such. It just not define them. However, it helps us find their strengths to navigate this world better. I mean strengths. I am not going to go through their life saying they can't do this because of their label. They will not be able to do certain things that is just a fact. I will always be there to say you can do this and do it well.
Sunday, April 6, 2014
Accepting Grace
This would be the second part of "Grace to Accept Acceptance". We think of gifts as something pleasant. Something that is enjoyed. Not something that causes us pain or strife. However, grace from God works in many different ways. Grace is given. How it is given depends on the person.
I had mentioned that Autism was a blessing in many ways in my previous post. I had also mentioned it was a struggle. A struggle can be a blessing. It has certainly got this household in gear. I don't know what exactly what I would be doing with my life if Sharon was not diagnosed. I certainly would not have met some of the most wonderful people. I would not just call up a State Legislatures office asking for things to change. Or get half, HALF the stuff that I do get done if it were not for Sharon. I communicate more efficiently that before. I also could look at myself at what I was doing that wasn't socially acceptable. Sharon's way of learning is straight coping. I have to make sure I am a decent example. One of the things to do that is to say I didn't do something right. I did not behave correctly I say( more often than I want to). And explain that nobody can do every right all the time. That is why we need Jesus. I need Jesus.
Think about the times you were in pain. Think about a struggle that you have gone through. There was a positive in that. I guarantee you there is a positive. You might be so grieved that you cannot see it. That struggle leads you to draw closer to God or it can eat you. I had plenty of times were struggles ate me up. Plenty of pain that was overwhelming that I couldn't get past. It was only until I drew myself to Christ. That the cloud of grief was removed. I could grieve that my child has Autism. That she will not achieve some things that another child will not. Or I could choose by the Grace of God to see the positive side of it. I could see all of her strengths instead of her weaknesses. In doing that she will see herself as someone who is stronger. That life is something that is positive. That God made her especially for a purpose He already is fulfilling.
Is Autism the worst thing that can happen? NO. I am very lucky that I have a bright young lady. She has taught me more about life than I could ever teach her. What is the biggest thing as a parent we need to worry about? The world it is so dangerous isn't? Needles, plastic, GMO, Gluten and etc. Sure we have allergies. We have reactions to things. I, myself, have gotten allergic reactions in summertime exercising. That is right after running in summer, straight to the ER. Scary isn't it? Not as scary as the sin that eats at my heart everyday. As much as we bubble wrap our kids. What happens when that sin starts to eat away at them? As parents we have to prepare for that struggle that is going to happen. It is not a maybe this will happen. They will struggle. They will suffer. This world isn't meant for anything less. As a parent that has child(ren) because both of mine have needs; I need to say do not fear. I need to say that with confidence. I need to say it boldly and truthfully. If I have Christ what shall I fear?
I had mentioned that Autism was a blessing in many ways in my previous post. I had also mentioned it was a struggle. A struggle can be a blessing. It has certainly got this household in gear. I don't know what exactly what I would be doing with my life if Sharon was not diagnosed. I certainly would not have met some of the most wonderful people. I would not just call up a State Legislatures office asking for things to change. Or get half, HALF the stuff that I do get done if it were not for Sharon. I communicate more efficiently that before. I also could look at myself at what I was doing that wasn't socially acceptable. Sharon's way of learning is straight coping. I have to make sure I am a decent example. One of the things to do that is to say I didn't do something right. I did not behave correctly I say( more often than I want to). And explain that nobody can do every right all the time. That is why we need Jesus. I need Jesus.
Think about the times you were in pain. Think about a struggle that you have gone through. There was a positive in that. I guarantee you there is a positive. You might be so grieved that you cannot see it. That struggle leads you to draw closer to God or it can eat you. I had plenty of times were struggles ate me up. Plenty of pain that was overwhelming that I couldn't get past. It was only until I drew myself to Christ. That the cloud of grief was removed. I could grieve that my child has Autism. That she will not achieve some things that another child will not. Or I could choose by the Grace of God to see the positive side of it. I could see all of her strengths instead of her weaknesses. In doing that she will see herself as someone who is stronger. That life is something that is positive. That God made her especially for a purpose He already is fulfilling.
Is Autism the worst thing that can happen? NO. I am very lucky that I have a bright young lady. She has taught me more about life than I could ever teach her. What is the biggest thing as a parent we need to worry about? The world it is so dangerous isn't? Needles, plastic, GMO, Gluten and etc. Sure we have allergies. We have reactions to things. I, myself, have gotten allergic reactions in summertime exercising. That is right after running in summer, straight to the ER. Scary isn't it? Not as scary as the sin that eats at my heart everyday. As much as we bubble wrap our kids. What happens when that sin starts to eat away at them? As parents we have to prepare for that struggle that is going to happen. It is not a maybe this will happen. They will struggle. They will suffer. This world isn't meant for anything less. As a parent that has child(ren) because both of mine have needs; I need to say do not fear. I need to say that with confidence. I need to say it boldly and truthfully. If I have Christ what shall I fear?
Thursday, April 3, 2014
Grace to Accept Acceptance
It is April. A lot of families that have children with Autism are celebrating Autism Awareness month. Yes we celebrate our kids. We do it in different ways. We might just put a blue light out on our porch. Some might volunteer this month. Some are donating to different organizations for the month. Some are doing what I do which is try and describe their experiences of having this challenge or as I see a blessing. A blessing? Isn't Autism a disorder? Isn't it a struggle for your child and you everyday? Yes it is but in ways that some people can't fathom Autism blessed our household.
It is hard for some people to accept that there might be some positives to struggles. That struggles make you a better person. Struggles get things done in this life. If we had it easy breezy there would be nothing getting done. It is when we are uncomfortable that we seek to change our outcome. The symptoms of Autism can create havoc in the house that is for sure. However, there are things that are so extraordinary about my daughter that it is easily looked past.
My daughter is a cuddle muffin. She is different even in the spectrum. She loves to be cuddled and carried by me. She is 6 and getting quite big. Even though I still pick her up. She rests her head on my shoulder as she has done for 6 years. She remembers practically everything. She will use that to communicate in future conversations. She will use a line in a movie to answer a question correctly. She downloads conversations and stores them for when she needs to use them. She is her own best teacher. Once someone teaches her something she will take that and repeat it over and over until it is learned. Even though it is hard for her to answer a question directly she will find a way to answer it indirectly. She now can perform scenes out of movies she likes. She can do things extremely well or she struggles.
My daughter is the best person to get a hug from. She is completely honest. COMPLETELY. She will tell you if she doesn't want to play with you. She will tell you when she likes you. She will get extremely excited to see a person she loves. She can be nervous around certain people. You will know that right away too. I would climb three mountains to see her smile. She touches everybody that she meets.
I'm going to celebrate my daughter this month. Not that I don't everyday. She has Autism. Autism does not have her. It IS a part of her. She is wired differently than I. That means even though she has struggles she might be able to do something a lot better than I can. She sees the world differently. Temple Grandin says "The world needs all kinds of minds" I couldn't agree more.
It is hard for some people to accept that there might be some positives to struggles. That struggles make you a better person. Struggles get things done in this life. If we had it easy breezy there would be nothing getting done. It is when we are uncomfortable that we seek to change our outcome. The symptoms of Autism can create havoc in the house that is for sure. However, there are things that are so extraordinary about my daughter that it is easily looked past.
My daughter is a cuddle muffin. She is different even in the spectrum. She loves to be cuddled and carried by me. She is 6 and getting quite big. Even though I still pick her up. She rests her head on my shoulder as she has done for 6 years. She remembers practically everything. She will use that to communicate in future conversations. She will use a line in a movie to answer a question correctly. She downloads conversations and stores them for when she needs to use them. She is her own best teacher. Once someone teaches her something she will take that and repeat it over and over until it is learned. Even though it is hard for her to answer a question directly she will find a way to answer it indirectly. She now can perform scenes out of movies she likes. She can do things extremely well or she struggles.
My daughter is the best person to get a hug from. She is completely honest. COMPLETELY. She will tell you if she doesn't want to play with you. She will tell you when she likes you. She will get extremely excited to see a person she loves. She can be nervous around certain people. You will know that right away too. I would climb three mountains to see her smile. She touches everybody that she meets.
I'm going to celebrate my daughter this month. Not that I don't everyday. She has Autism. Autism does not have her. It IS a part of her. She is wired differently than I. That means even though she has struggles she might be able to do something a lot better than I can. She sees the world differently. Temple Grandin says "The world needs all kinds of minds" I couldn't agree more.
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