We come to a new year and with it more hope for the future. A lot has happened this year. Sharon had started her intensive therapy just 5 months ago. She really has taken off with it. Along with her iPad for support Sharon has found her place. Leah is a very active 3 year old. That is an under statement. A tornado is more mild than this one. She is a bundle of energy that is non-stop until she sleeps. Keeping her occupied can be quite a task. It has been hard to adapt to our very busy schedule that has been required of us due to Sharon's therapy. But we have found that God's grace provides what ever need you have. So we shuffle from here to there in a hurried fashion. With little time to spare to get Sharon to where she needs to go. Sharon all the while oblivious to the chaotic fever bursting in the house. Leah all the while all to aware of it often protests about being shuffled here and there. But we get through it gingerly taking care to attending to both the girls needs not perfectly of course. Cuddling them telling them we love them. And explaining why we must do certain things. When we thought we had this thing down the whole routine it was going good something happened. Leah had woken up with very low blood sugar, At first I thought she was sick that she might have a stomach flu. But she was acting like she had throw up 9 times. She had not throw up once. She did not respond to her name. She kept on falling over. Her arms and legs like wet noodles. I knew something was wrong. I called the doctor and they sent me to the ER. Her sugar was below 50 which it should never get below. That send us into the hospital for a couple of days. With all of Sharon's school and therapy to handle. We walked out of the hospital with no answers as to why. Only to go to a genetics appointment in 3 weeks to do more testing. We woke her up to give her Pediasure in the middle of the night so her sugar didn't drop. I woke Leah and Sharon up like I always do to take Sharon to school on the day of her genetics appointment. Leah looked tired didn't want to get out of bed. Alarms immediately went off. This kid as soon as you come in starts climbing out. I start talking to her. Not responding. I tickle her. Not responding. I at this point now that it has happened again. And I'm crushed. It is now recurring or not a fluke. Something is going on with Leah. Paramedics are called, friends are called, therapy canceled. We had tests that needed to be done prior her getting treatment. I had to argue with the paramedic over that for 20 minutes. With the doctors note that I had put in his had that said as much before he called the ER. Finally got to the ER. We had to go to a different hospital where the geneticist was at. They had chalked it up to childhood hypoglycemia. After all the tests they have done they couldn't find a reason other than she is tall and very skinny. They are going to take one final genetic test to button things up. But they think she will grow out of it. Mean time I give her a supplement that helps put fat in her cells and give snacks before bed time. It has been over a month. She has not had an episode. But it is always in my mind and prayer.
Here is my point to this post which seems without one. EVERYONE struggles with something. Every single person on this planet has something they have to deal with. Is it worth being here you even say? Absolutely one hundred times it is worth it. Although we can't perfectly love here we can. Although this world is cruel I know God is with us. I know He will welcome me home one day. It is easier for me to see the blessings set before me because of my struggles. I would hate to take those for granted. I want people to understand that it might not be the pleasant things in life but the struggles that are God's greatest blessings to you. For without the struggles we would probably not draw so near to one that we need the most.
Kandi, Greg and Girls
Wednesday, December 26, 2012
Monday, July 23, 2012
Sharon Spelling Words
Sharon and Her Fireworks
Wednesday, June 27, 2012
Monday, June 25, 2012
This is important that we understand what stemming is all about. Stemming is a ritual that autistic people do to adjust themselves to a situation. Sharon here in this video was adjusting herself to one of two things. One the loud pounding of nails from the roofers. Two I found a day after this her shoes were a size smaller then her feet. Which one? I don't know. If I had to guess the loud roofers. Stemming is something that needs to be done. However, we should try to encourage our children to stem in a way that is not disruptive.
I love your Egg Chair
Aunt Jess insisted that Sharon have an Egg Chair. She was sure right. Sharon loves it.
Monday, June 11, 2012
http://ipadforsharon.chipin.com/ipad-for-sharon
This is Sharon's website to contribute for an IPAD. Many of my friends had made known a desire to "chipin" for an IPAD. Well this is a safe and effective way to chipin through this website you can chipin with paypal. What a wonderful concept. A near miracle for autistic children the IPAD has hundreds of apps just for autistic children. It has been a great learning tool for Sharon already in her school.
This is Sharon's website to contribute for an IPAD. Many of my friends had made known a desire to "chipin" for an IPAD. Well this is a safe and effective way to chipin through this website you can chipin with paypal. What a wonderful concept. A near miracle for autistic children the IPAD has hundreds of apps just for autistic children. It has been a great learning tool for Sharon already in her school.
Monday, May 21, 2012
Loving Autistically
It is quite normal for me to have something like "say cheese" repeated at me for hours on end. I try endlessly to redirect so that I no longer have to hear it but there it is is again "SAY CHEESE". She has a camera in her hand so that would be the reasoning behind it. You see my daughter is autistic and this would be referred to as echolalia. Which is completely normal in toddlers who go around and repeat what you say when they are learning to talk. However, in autistic children who have communication issues they sometimes never get out of the stage. I like to call Sharon my little auto repeat because she will nearly repeat anything that she hears and the tone that it was originally said in. When she is referring to herself she will usually say "you" or "Sharon" I have to prompt her to say I. After all that is what she hears. That is what she is learning. If she likes something she will say "You like such and such" and of course this is never once. And the more she likes someone the more often she is going to repeat what they say or their mannerisms. She will often be engaged with something and be listening to another conversation repeating words from that. I have observed this quite a few times. This tells me unlike a typical thinking person who would filter that out she is taking it all in. For an adult that can be overwhelming especially if there is a lot going on in a room at the time. Think about a 4 year old. That has to be scary, overbearing, and loud. Nonetheless it is hard for her to do group activities.
Sharon tries her hardest to do what we want her to. Although sometimes it is very difficult. And as a parent it is hard. When is Sharon actually being disobedient and when her autism affecting her. Just like any child that need comfort when things are difficult she comes to me for comfort when she can't do something because something is wrong. Disobedient children tend to go away from the parent and distance themselves. There are exceptions as well. Sharon runs away from me but she is not actually running from me she is running toward a desired object. And she is so intent on that desired object that she has shut me off. This can happen with a neurotypical child as well, However, a danger factor and impulse control are established. Which if a ball went out in the middle of the street with cars whizzing by Sharon would have no problem going to get it. This is a fact as a parent that I have to be aware of. I must be with her to be her danger factor for her until she understands or we get that established it will take longer. Like any parent we do whatever it takes to keep our child safe. Sometimes that includes putting a leash on that child. I had to do that with Sharon when she was younger because she would just take off and RUN. Because she loves to run. If I need the leash I have it.
Then there are her quirks. She has a lot of things that have to be so so. Her food. Now don't get me wrong we don't put up with picky eaters. You eat what is on the table or oh well. But there is a difference between a picky eater and an AUTISTIC eater. A picky eater will turn his or her nose up at what you have and push it away not eat the selected item. The other will obsess over the item will not go near the table quite possibly hide and might have a meltdown/panic attack. We try to avoid the latter. It is not fun for anybody in the family for Sharon to panic about chicken and rice mixed together. This is something to work on but one step at a time. She remembers in sequences. Those sequences need to remain the same. She does not like when you change the sequences of doing things. Like the way she gets dress. Puts on her shoes. These sort of things. Where you do these things. In extreme case like you made a mistake in a process well guess what you are making that mistake when you do it again. She will bring to attention when you are not sitting the way you usually sit. The way you have your hands. If you don't wear a hat normally don't bother putting one on when you visit Sharon. She will most likely talk at you until you remove it. You leave a cabinet open then go to get something that puppy is getting closed. If you are driving towards some body's house or a place she is familiar with she expects we are going there. And the drama that follows when we do not is not that fun. She has lots of other things that she will or will not tell you about right away. However she will let you know with the behavior. She once had long hair which I tried doing things with before I knew she was autistic. A ponytail which her sister loves to have in her hair was torture for Sharon. It was a day long fit if we had one in her hair. I now can imagine that she could every strand of her hair being pulled back on her head and the pain of that. It is a struggle to brush her hair in the morning so her hair is very short. She is often in full pink mistaken for a boy. I have to drag her into a place she is unfamiliar with. I know it is the fear of the smell, the sounds, and sights that worry her from wanting her to go in. She cannot filter and hears, sees, smells everything at once and it is overwhelming. It is easier when you remember what it is like. She really hates going to a new persons house and it takes several visits for me not to have to carry her to the doorstep. Parties are painful for both of us. It is loud and overwhelming for her. So she wants to be cuddled by me. Then she starts to push and hit at me. Now she knows this is not appropriate. She has no other way to tell me she is in pain and is desperate. This is her way of getting me to get her out of the situation that we are in. So most times if it is an inside party we usually have to decline the invite. A place that is going to be loud will be painful for Sharon. Likewise traveling to a place that is unfamiliar that will be filled with unpredictability is very stressful. And at this point in time not even worth it. We are here. If people want to see us they know were we are. We have a wonderful network of friends that adore our children that is all the we can ask for in this life.
Now that was a very brief explanation of how exactly Autism affects Sharon and it does in many ways. The thing about Autism which is really cool is you get to look at life in a whole different way. Sharon sees this world completely different then I do. I am so blessed to be able to be a part of that. She gets excited about little details that perhaps we as neurotypicals would often over look. She can hear an airplane before any of us can see it. Hear someone talking from the other room and repeat what they are saying. My husband and I were watching a movie, Liongate, the same company that makes the Letter factory, made this movie. The theme song can on and Sharon was asking to watch the Letters from her bedroom. She will takes quotes from videos and apply them correctly to a situation Autistic people do quite often. But how often do you try and remember a quote from a favorite movie and fall short? Sharon can back log things she's heard from months ago. She can mimic someones voice. The way they move. She was in bed was having a conversation between two different people and she was not involved. One of them was a boy. Probably a conversation she heard from across the room. Although she cannot learn like a normal child the way her brain works with her memory and data collecting she has been able to start talking in first person, tell me she loves me, and able to show affection to her sister. She has been telling Daddy she loves him too. She has always been able to give Daddy and Mama hugs but just recently has this been given to Leah. Who has been a glad recipient.
So as a parent we all want that child that comes out that is going to be perfect. That is going to laugh at you. That is going to smile appropriately at goofy faces or familiar faces. I certainly wanted that. I am not going to lie I look a 4 who has a full conversation with their parents and feel somewhat jealous. But then Sharon smiles at me. Sharon has the most beautiful smile. A smile that can combat with a thousand conversations. Someone once said that 93% of communication is non-verbal. That means that most of the time we get what we need without speaking at all. We want our children to do and behave according to the principals you set up for them. So what happens when those principals your child can physically not do? Like sit still at the dinner table. Sharon cannot do that at times. So she must stay in the kitchen with food. Be quiet. HA. That is a good one. That is like extra hard. Although she tries. She makes noises and the Pastor recites numbers that obviously have to be repeated. So you hold fast and set goals hoping one day you get to that point. I know one thing I will go to the moon and back to reach my daughter. The only thing we can do as a family is love Autistically.
Sharon tries her hardest to do what we want her to. Although sometimes it is very difficult. And as a parent it is hard. When is Sharon actually being disobedient and when her autism affecting her. Just like any child that need comfort when things are difficult she comes to me for comfort when she can't do something because something is wrong. Disobedient children tend to go away from the parent and distance themselves. There are exceptions as well. Sharon runs away from me but she is not actually running from me she is running toward a desired object. And she is so intent on that desired object that she has shut me off. This can happen with a neurotypical child as well, However, a danger factor and impulse control are established. Which if a ball went out in the middle of the street with cars whizzing by Sharon would have no problem going to get it. This is a fact as a parent that I have to be aware of. I must be with her to be her danger factor for her until she understands or we get that established it will take longer. Like any parent we do whatever it takes to keep our child safe. Sometimes that includes putting a leash on that child. I had to do that with Sharon when she was younger because she would just take off and RUN. Because she loves to run. If I need the leash I have it.
Then there are her quirks. She has a lot of things that have to be so so. Her food. Now don't get me wrong we don't put up with picky eaters. You eat what is on the table or oh well. But there is a difference between a picky eater and an AUTISTIC eater. A picky eater will turn his or her nose up at what you have and push it away not eat the selected item. The other will obsess over the item will not go near the table quite possibly hide and might have a meltdown/panic attack. We try to avoid the latter. It is not fun for anybody in the family for Sharon to panic about chicken and rice mixed together. This is something to work on but one step at a time. She remembers in sequences. Those sequences need to remain the same. She does not like when you change the sequences of doing things. Like the way she gets dress. Puts on her shoes. These sort of things. Where you do these things. In extreme case like you made a mistake in a process well guess what you are making that mistake when you do it again. She will bring to attention when you are not sitting the way you usually sit. The way you have your hands. If you don't wear a hat normally don't bother putting one on when you visit Sharon. She will most likely talk at you until you remove it. You leave a cabinet open then go to get something that puppy is getting closed. If you are driving towards some body's house or a place she is familiar with she expects we are going there. And the drama that follows when we do not is not that fun. She has lots of other things that she will or will not tell you about right away. However she will let you know with the behavior. She once had long hair which I tried doing things with before I knew she was autistic. A ponytail which her sister loves to have in her hair was torture for Sharon. It was a day long fit if we had one in her hair. I now can imagine that she could every strand of her hair being pulled back on her head and the pain of that. It is a struggle to brush her hair in the morning so her hair is very short. She is often in full pink mistaken for a boy. I have to drag her into a place she is unfamiliar with. I know it is the fear of the smell, the sounds, and sights that worry her from wanting her to go in. She cannot filter and hears, sees, smells everything at once and it is overwhelming. It is easier when you remember what it is like. She really hates going to a new persons house and it takes several visits for me not to have to carry her to the doorstep. Parties are painful for both of us. It is loud and overwhelming for her. So she wants to be cuddled by me. Then she starts to push and hit at me. Now she knows this is not appropriate. She has no other way to tell me she is in pain and is desperate. This is her way of getting me to get her out of the situation that we are in. So most times if it is an inside party we usually have to decline the invite. A place that is going to be loud will be painful for Sharon. Likewise traveling to a place that is unfamiliar that will be filled with unpredictability is very stressful. And at this point in time not even worth it. We are here. If people want to see us they know were we are. We have a wonderful network of friends that adore our children that is all the we can ask for in this life.
Now that was a very brief explanation of how exactly Autism affects Sharon and it does in many ways. The thing about Autism which is really cool is you get to look at life in a whole different way. Sharon sees this world completely different then I do. I am so blessed to be able to be a part of that. She gets excited about little details that perhaps we as neurotypicals would often over look. She can hear an airplane before any of us can see it. Hear someone talking from the other room and repeat what they are saying. My husband and I were watching a movie, Liongate, the same company that makes the Letter factory, made this movie. The theme song can on and Sharon was asking to watch the Letters from her bedroom. She will takes quotes from videos and apply them correctly to a situation Autistic people do quite often. But how often do you try and remember a quote from a favorite movie and fall short? Sharon can back log things she's heard from months ago. She can mimic someones voice. The way they move. She was in bed was having a conversation between two different people and she was not involved. One of them was a boy. Probably a conversation she heard from across the room. Although she cannot learn like a normal child the way her brain works with her memory and data collecting she has been able to start talking in first person, tell me she loves me, and able to show affection to her sister. She has been telling Daddy she loves him too. She has always been able to give Daddy and Mama hugs but just recently has this been given to Leah. Who has been a glad recipient.
So as a parent we all want that child that comes out that is going to be perfect. That is going to laugh at you. That is going to smile appropriately at goofy faces or familiar faces. I certainly wanted that. I am not going to lie I look a 4 who has a full conversation with their parents and feel somewhat jealous. But then Sharon smiles at me. Sharon has the most beautiful smile. A smile that can combat with a thousand conversations. Someone once said that 93% of communication is non-verbal. That means that most of the time we get what we need without speaking at all. We want our children to do and behave according to the principals you set up for them. So what happens when those principals your child can physically not do? Like sit still at the dinner table. Sharon cannot do that at times. So she must stay in the kitchen with food. Be quiet. HA. That is a good one. That is like extra hard. Although she tries. She makes noises and the Pastor recites numbers that obviously have to be repeated. So you hold fast and set goals hoping one day you get to that point. I know one thing I will go to the moon and back to reach my daughter. The only thing we can do as a family is love Autistically.
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