Tuesday, April 9, 2013
Love
It seems like autism has been on the front of most folks minds lately. I have had high school students call for interviews they need for reports/projects for school and others, of all ages, have just had general questions. I like to hear questions about autism and I like to discuss our life as a family and I like when people are genuinely interested in what goes on with Ty and kids like him. I love when I can tell that our conversation switches from "is she ok talking about this" to "ok now for the deep questions".
Recently I was asked if i think people with autism can love. My immediate respond is YES, why wouldn't they?! This question has hung around in my head for a while and I keep coming back to scripture. The Bible says that love is patient and kind...
1 Corinthians 13:4-8
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.
What I have realized is that people with Autism love deeper and more clearly than any "normal" person ever could. When most people talk about love its always an emotion, when really its an action and something that is learned not given to us at birth. I mean think about it, from day one we enter the world looking out for ourselves and trying to satisfy needs and desires that we have. I am reading a book that was recommended to me by a friend called "the speed of dark" by Elizabeth moon. It tells a story from the perspective of a young man with autism. He is very straight forward and honest in everything he does, mainly, because to do otherwise doesn't make sense. One example- He was late for work so he stayed late to the minute because it would bother him for weeks if he didn't. He isn't mean to others, even those that we consider annoying... He just sees them as different. Aren't we all unique?! For anyone to say that Someone else is incapable of love is to say that, they themselves are incapable of love because by the biblical definition Love does not boast, it's not self seeking, keeps no record of wrong. So if we are looking at what someone else can or cant do isnt that boasting or in a small way saying "im better than you" just because of some small irregularities or tics or stems and if all we want to do is label one another... Can we really love?
I'm not saying that it is wrong to say "someone has autism" or to talk about what that means or to attend therapy and discuss life with autism but it is wrong to judge and say that we are better just because someone is different ....
So yes I believe they know how to love and are capable beyond what our minds can comprehend ...
Monday, April 1, 2013
School, Awareness and Life
WOW! Is it April already?!!! Time has just flown by and I have so much to do, and so little time to accomplish it all!! I'm sorry that I skipped the month of March on my posts, but we had a lot going on and I never got to just sit down and write. So here we are in April. Ty will be graduating from the Children's Center in May and if all goes well starting school in August?! We have not decided where he will be attending just yet, because we are hoping for a God thing and that some doors will be swung wide open at a school in our area for a new class for kids with autism?! It would be much easier to add a class to a school than to start a school from scratch in such a short time frame?! Well that means that this momma is a basket case. Even though I am not a planner, I don't like the uncertainty of the future for my Ty man. With Tripp we know that he will attend preschool and then elementary, jr high and then high school all at the same place - and I want these same assurances for Ty but I do not want to be satisfied with "good enough" - I don't want to look back and wish I had done something different. He has come a long way in 5 years and I am afraid of regression. I am afraid of having a teacher who doesn't know what to do and who is to prideful, scared or unwilling to ask questions or to push him beyond his comfort zone. If you don't push Ty then he will do his best to run over you and get what he wants. I do want him to be happy but I also want him to learn and to show this world what he can do. So because of all that, some days are just better than others.
I know that God has a plan and I know that He will use Ty for his glory. Even though I know, it doesn't make it easy.
April is autism awareness month and I know now, more than ever how important it is to be aware and to make others aware. Autism is prevalent everywhere we look, but the sad thing is that teachers and people don't know what to do. Some teachers do but not all of them. They don't know how to respond to kids and individuals with autism because each one is so different. There is no text book answer, there is no list of "do this and that" and you will accomplish "this" ... it's just not that easy. I've noticed that because of the uncertainty of outcomes of therapies and different teaching styles some educators choose to look the other way and just ignore the issue. I've always wondered why in the world you would have standardized tests. Even outside of autism, every child learns differently, every child is not the same and how can we expect 25 5 year old to learn and react the same way when they are still growing and learning and their ages could be 6 months apart? Do we expect a 6 month old to do what a 1 year old does? Then why do we expect 5 year olds to learn on the same level as 5 and 1/2 year olds? yes there are some 4 year olds that are smarter than 5 year olds and so on and so forth. But my point is, if we would approach education in general as an individual plan for each child and not expect every child to develop at the same rate then maybe there would be less ADHD and PTS and who knows what else that is caused by the stress of school and the inability to learn in a stamped out time frame. The gov't demanding things of states who in turn demand things from schools who demand things from teachers who put that weight on a child? Does this really make sense? how about lets love on these kids, all of them "normal", "special" or whatever label they choose to place.... if we would just get rid of all the red tape and focus on the kids, don't you think we would accomplish a lot more? I know that I can learn and function a lot better when I am happy. I know that teachers would be less stressed and so would the kids. Guess I'll step off my soap box ... any who
On to the good stuff. Ty has almost concurred drinking out of an open cup! He loves to do it and will drink just enough and then empty the rest out on the ground/carpet/floor/etc. So we are working on not dumping the cup! He has concurred the whole drinking without water pouring down the side of his face. :) His eating habits are also improving, he still loves breads, pizza, oatmeal, spaghetti and pudding but he is branching out a bit with peas, corn, strawberries and a few others. He is willing to try anything but after that first bite, if he doesn't want it - you will know! So things are coming along. His words are still forming and from day to day we hear him say new things but then he doesn't say them again when you ask so we aren't always sure if we heard him right. Sam was playing with the boys the other day and said that Ty said "Batman" clear as a bell... Tripp argued with him about it.... and we haven't heard him say it again, but I don't doubt him one bit! There have been other words that he has said and we get excited for him and he gets excited because we are excited!! It makes me happy that he is becoming more vocal. He may not be forming sentences yet but I know that once he gets the hang of this he will be a chatter box! Even more so than Tripp, if that's possible! :)
We had an Easter photo shoot at the house and this was the first time that I didn't have to chase Ty down for pictures! Let me rewind here for a minute... At their birthday party we had a photo booth and used a bench for the kids to stand on so that they could be in the pictures. Well Ty had a blast, he photo bombed almost every group and would just run up and touch the screen and stand there cheesing for his own photos?! I assume its because he could see himself on the screen, but I am not really sure. So when I got ready to take their Easter pictures, I was expecting the same run around and fast snapping that usually takes place. But when I pulled out that bench for them to sit on... Ty just walked over and sat down and smiled?! He would get up and go get different things and then come back and sit down and smile. He would stand on the bench and smile with Tripp and then jump off and get distracted but he kept coming back?! I didn't have to really fight him like I normally do? It was awesome! I would tell him to sit with Tripp or love on Tripp and he would do anything I asked! I was blown away by the ease of the photo shoot and afterwords as I was flipping through the pics on my computer, both boys sat and looked at their pics, pointing and laughing at different ones. It was just awesome to see him doing things that, he normally wouldn't be interested in, but for whatever reason he wanted to be in on it from the start to the finish!
So things haven been exciting on our little hill and I will do my best to post more often! :) thanks for reading! i know i am kind of all over the place on this one?! :)
I know that God has a plan and I know that He will use Ty for his glory. Even though I know, it doesn't make it easy.
April is autism awareness month and I know now, more than ever how important it is to be aware and to make others aware. Autism is prevalent everywhere we look, but the sad thing is that teachers and people don't know what to do. Some teachers do but not all of them. They don't know how to respond to kids and individuals with autism because each one is so different. There is no text book answer, there is no list of "do this and that" and you will accomplish "this" ... it's just not that easy. I've noticed that because of the uncertainty of outcomes of therapies and different teaching styles some educators choose to look the other way and just ignore the issue. I've always wondered why in the world you would have standardized tests. Even outside of autism, every child learns differently, every child is not the same and how can we expect 25 5 year old to learn and react the same way when they are still growing and learning and their ages could be 6 months apart? Do we expect a 6 month old to do what a 1 year old does? Then why do we expect 5 year olds to learn on the same level as 5 and 1/2 year olds? yes there are some 4 year olds that are smarter than 5 year olds and so on and so forth. But my point is, if we would approach education in general as an individual plan for each child and not expect every child to develop at the same rate then maybe there would be less ADHD and PTS and who knows what else that is caused by the stress of school and the inability to learn in a stamped out time frame. The gov't demanding things of states who in turn demand things from schools who demand things from teachers who put that weight on a child? Does this really make sense? how about lets love on these kids, all of them "normal", "special" or whatever label they choose to place.... if we would just get rid of all the red tape and focus on the kids, don't you think we would accomplish a lot more? I know that I can learn and function a lot better when I am happy. I know that teachers would be less stressed and so would the kids. Guess I'll step off my soap box ... any who
On to the good stuff. Ty has almost concurred drinking out of an open cup! He loves to do it and will drink just enough and then empty the rest out on the ground/carpet/floor/etc. So we are working on not dumping the cup! He has concurred the whole drinking without water pouring down the side of his face. :) His eating habits are also improving, he still loves breads, pizza, oatmeal, spaghetti and pudding but he is branching out a bit with peas, corn, strawberries and a few others. He is willing to try anything but after that first bite, if he doesn't want it - you will know! So things are coming along. His words are still forming and from day to day we hear him say new things but then he doesn't say them again when you ask so we aren't always sure if we heard him right. Sam was playing with the boys the other day and said that Ty said "Batman" clear as a bell... Tripp argued with him about it.... and we haven't heard him say it again, but I don't doubt him one bit! There have been other words that he has said and we get excited for him and he gets excited because we are excited!! It makes me happy that he is becoming more vocal. He may not be forming sentences yet but I know that once he gets the hang of this he will be a chatter box! Even more so than Tripp, if that's possible! :)
We had an Easter photo shoot at the house and this was the first time that I didn't have to chase Ty down for pictures! Let me rewind here for a minute... At their birthday party we had a photo booth and used a bench for the kids to stand on so that they could be in the pictures. Well Ty had a blast, he photo bombed almost every group and would just run up and touch the screen and stand there cheesing for his own photos?! I assume its because he could see himself on the screen, but I am not really sure. So when I got ready to take their Easter pictures, I was expecting the same run around and fast snapping that usually takes place. But when I pulled out that bench for them to sit on... Ty just walked over and sat down and smiled?! He would get up and go get different things and then come back and sit down and smile. He would stand on the bench and smile with Tripp and then jump off and get distracted but he kept coming back?! I didn't have to really fight him like I normally do? It was awesome! I would tell him to sit with Tripp or love on Tripp and he would do anything I asked! I was blown away by the ease of the photo shoot and afterwords as I was flipping through the pics on my computer, both boys sat and looked at their pics, pointing and laughing at different ones. It was just awesome to see him doing things that, he normally wouldn't be interested in, but for whatever reason he wanted to be in on it from the start to the finish!
So things haven been exciting on our little hill and I will do my best to post more often! :) thanks for reading! i know i am kind of all over the place on this one?! :)
Friday, February 15, 2013
speed bump
Communication is a touchy subject when it comes to autism. It is a necessity for daily living and when you're not affected by the inability to communicate you take the ability to communicate for granted and it almost becomes a reflex. Most people go to bed talking, texting, tweeting, facebooking, emailing and chatting with the world and then wake up the next morning doing all the same things again. I know I have issues with knowing when to keep my mouth shut?! I never have to stop and think about how to form words or how to use hand signals to express my needs so that someone else will understand me. There are so many people out there who struggle to communicate on a daily basis. When faced with autism, communication barriers come in a variety pack: the inability to form words, knowing how to mimic words but not really ask for things, not being able to read social cues and not being able to control body movements can really hinder a conversation.
Ty struggles daily with communication. It is hard for him to get his point across but it's not for lack of trying! He babbles a lot and "talks" to us constantly. Sometimes its in a normal tone but he does get animated when he is trying to get his point across. If he wants to go outside, he will run to the door and jiggle the handle then run to me and "talk" while pointing at the door and if we don't go outside then he will run and throw himself on the couch while screaming and peeking out of the corner of his eye just waiting for me to give in, sometimes I do. Ty does have some hand signs that he uses to get what he wants and he does have a few words: more, momma, ball, iPad, my iPad, bye bye, papaw, uh ah(no), bird, mine, bread, bite. When he talks it's not always crystal clear, most of the time his words are squished together and not finished. So "bird" comes out "birrrr", "momma" is said clearly, "iPad" is "iPaaaa" - you get the idea. He has a hard time finishing his words. I'm not sure if it's because of a lack of strength in his muscles located in and around his mouth or if it's just something that isn't connecting during the "thought-muscle-action" process(I know that's not the technical term but you know what I mean)? Whatever the cause may be, it makes for a struggle on his end. I've been asked many times "Will Ty ever talk?" That's a hard question to hear and to answer. Most days I answer with the positive "Yes, I think he will. He already is forming words and sounds and trying really hard to communicate, and these are all signs of communication and basic steps of learning how to talk. So yes." I go on to talk about how most babies and toddlers that are learning to speak babble first and then mimic and then start to form sentences and for Ty it's just a slower process but that he is following in those steps, which is promising. I never want to be pessimistic when it comes to Ty and the things he struggles with, the Bible says that our words have power and that what we speak over someone can become reality. So I want to be careful when I talk about Ty and his future (and Tripp too). Don't get me wrong, I have wondered and I have questioned, and I have cried and I have prayed a lot! But I never want to say "well this is good enough" because I know that Ty can and will do amazing things so why would I limit him to what my mind can comprehend?
Some people have asked me to teach them how to talk to Ty. I love that there are people who want to get involved with my little man and that seek to be a part of his world. I don't know how to go about this? I guess the first thing I would say is to just listen to him and talk to him as you would any other child. He will talk to you and he will grab your face and make sure you are looking at him while he talks to you. (that always makes me laugh out loud). Ty understands just about everything we say. We didn't always know this but now that we do, things are a little less hectic around our house. I can ask Ty to go get something and bring it to me and he will do it, I can tell him to throw something in the trash and he will do it, I can tell him what's going on and he understands. He doesn't always agree with me (what child does) but he understands what we are saying. This is huge! When we finally realized that he knew what we were saying, we had a whole new game plan. We give Tripp a lot of responsibilities and require a lot of him because we know that he can do it and because we want him to be challenged, learn and grow. The same thing goes for Ty, but with Ty we didn't want to require something of him that we weren't sure he could do and I think he was trying to tell us "hey I can do that too!" but we weren't listening. One night I sent Tripp in the kitchen to get himself a glass of water, he goes and gets a cup and then holds it to the dispenser in the fridge and fills up his own cup. Well Ty came up to me with a an open cup (we still use sippy cups) and starts "talking" to me, so I said "sure you can get some water too." His face lit up, I had to help him push to get the water to come out, and then he stood there gulping the water as it spilled down each side of his cheek. We did this two or three times. When he was done I gave him a paper towel and asked him to help me clean up the mess and not only did he clean it up but he also threw his paper towel in the trash!? I sat back amazed, not just that he did all of that, but that I have been to blind to see it before. So the student becomes the teacher! Communicating with Ty is a learning process and there is no precise science to it. We learn on a daily basis and I encourage you to find someone that you have a hard time communicating with, and just spend a little time with them, listen to them, watch them, they will eventually show you what they know and you will learn how to communicate in a whole new way. Yes, communication is a speed bump in the life of someone with autism, but if you slow down and ease over it, you don't really notice the bump but you get to enjoy the ride!
thanks for reading! :)
Ty struggles daily with communication. It is hard for him to get his point across but it's not for lack of trying! He babbles a lot and "talks" to us constantly. Sometimes its in a normal tone but he does get animated when he is trying to get his point across. If he wants to go outside, he will run to the door and jiggle the handle then run to me and "talk" while pointing at the door and if we don't go outside then he will run and throw himself on the couch while screaming and peeking out of the corner of his eye just waiting for me to give in, sometimes I do. Ty does have some hand signs that he uses to get what he wants and he does have a few words: more, momma, ball, iPad, my iPad, bye bye, papaw, uh ah(no), bird, mine, bread, bite. When he talks it's not always crystal clear, most of the time his words are squished together and not finished. So "bird" comes out "birrrr", "momma" is said clearly, "iPad" is "iPaaaa" - you get the idea. He has a hard time finishing his words. I'm not sure if it's because of a lack of strength in his muscles located in and around his mouth or if it's just something that isn't connecting during the "thought-muscle-action" process(I know that's not the technical term but you know what I mean)? Whatever the cause may be, it makes for a struggle on his end. I've been asked many times "Will Ty ever talk?" That's a hard question to hear and to answer. Most days I answer with the positive "Yes, I think he will. He already is forming words and sounds and trying really hard to communicate, and these are all signs of communication and basic steps of learning how to talk. So yes." I go on to talk about how most babies and toddlers that are learning to speak babble first and then mimic and then start to form sentences and for Ty it's just a slower process but that he is following in those steps, which is promising. I never want to be pessimistic when it comes to Ty and the things he struggles with, the Bible says that our words have power and that what we speak over someone can become reality. So I want to be careful when I talk about Ty and his future (and Tripp too). Don't get me wrong, I have wondered and I have questioned, and I have cried and I have prayed a lot! But I never want to say "well this is good enough" because I know that Ty can and will do amazing things so why would I limit him to what my mind can comprehend?
Some people have asked me to teach them how to talk to Ty. I love that there are people who want to get involved with my little man and that seek to be a part of his world. I don't know how to go about this? I guess the first thing I would say is to just listen to him and talk to him as you would any other child. He will talk to you and he will grab your face and make sure you are looking at him while he talks to you. (that always makes me laugh out loud). Ty understands just about everything we say. We didn't always know this but now that we do, things are a little less hectic around our house. I can ask Ty to go get something and bring it to me and he will do it, I can tell him to throw something in the trash and he will do it, I can tell him what's going on and he understands. He doesn't always agree with me (what child does) but he understands what we are saying. This is huge! When we finally realized that he knew what we were saying, we had a whole new game plan. We give Tripp a lot of responsibilities and require a lot of him because we know that he can do it and because we want him to be challenged, learn and grow. The same thing goes for Ty, but with Ty we didn't want to require something of him that we weren't sure he could do and I think he was trying to tell us "hey I can do that too!" but we weren't listening. One night I sent Tripp in the kitchen to get himself a glass of water, he goes and gets a cup and then holds it to the dispenser in the fridge and fills up his own cup. Well Ty came up to me with a an open cup (we still use sippy cups) and starts "talking" to me, so I said "sure you can get some water too." His face lit up, I had to help him push to get the water to come out, and then he stood there gulping the water as it spilled down each side of his cheek. We did this two or three times. When he was done I gave him a paper towel and asked him to help me clean up the mess and not only did he clean it up but he also threw his paper towel in the trash!? I sat back amazed, not just that he did all of that, but that I have been to blind to see it before. So the student becomes the teacher! Communicating with Ty is a learning process and there is no precise science to it. We learn on a daily basis and I encourage you to find someone that you have a hard time communicating with, and just spend a little time with them, listen to them, watch them, they will eventually show you what they know and you will learn how to communicate in a whole new way. Yes, communication is a speed bump in the life of someone with autism, but if you slow down and ease over it, you don't really notice the bump but you get to enjoy the ride!
thanks for reading! :)
Monday, February 4, 2013
Autism & the love of God
We have the most amazing church family!! I know I have written about them many times but I want to be sure that everyone knows how much it means to us to be a part of this church. We live in a rural area in south Mississippi and we are blessed to be able to serve along these amazing people! If you are reading this and you don't like religion or believe that God exists, I hope you will be open minded to what I have to say. I believe that Jesus came and died for our sins and that He rose again, paid our debt and when we choose to give our life to Him, we will be saved! That being said, the church or those that represent the church as a whole can get a bad a wrap. We have seen it in the news with people claiming to know God and claiming to do His will but their actions and words say otherwise. I'm not here to debate this and I don't want to force anyone to believe in Jesus. But I hope that everyone has a chance to encounter Him and make their own decision.
In our little church we have seen the love of God at work. We are surrounded by people who love us and pray for us on a regular basis and who genuinely care about the lives of people in this world. We have the most amazing preacher who has shown us all how to be a church, how to love, give and not judge and how to seek God. I have never seen someone so passionate and caring. He has an amazing wife and two kids that support him and are some of the most sacrificial people I know. I hope that as we get older, we will follow in their footsteps. The people that come to our church are all so willing to do whatever needs to be done. They love and encourage each other and help one another, serve the community and reach out to those who need it. We have never had a need come before the church that could not be met in some way. There are children, youth, young adults and those older than young adults (i love yall) that all participate and seek to do what God wants them to do. The youth group is so loving and accepting, they care about each other and love to have a good time! I work with our youth and kids at church along with other volunteers and everything that needs to be done is always taken care of and most times it's more than enough! I'm not just talking about money, these people pray and PRAY and PRAY... if you don't believe in prayer I want to challenge you to give it a chance. The bible says if you ask according to His will, you will receive. If we want/need something that is in line with God's will, He will provide and most times He will provide in abundance of what we could ever imagine!
This past Sunday was super bowl Sunday, at our church it is "Souper Sunday". This has been going on for some time and everyone brings soup and snacks and we have lunch after church and have always taken up a donation and given it to the youth or to a need in the community. Last year they called it Souper Sunday for Ty and everyone wore their blue shirts and they gave a love offering to help us with Ty's therapy. I cried the day they called to ask if we were ok with this, and I cried the day of souper sunday. (i'm not one to cry in public). So this year when they wanted to do it again, I tried to prepare my self emotionally so I would not cry at the drop of a hat. I struggled with being on the receiving end of a love offering and I prayed alot. I prayed for prayers, if that makes any since. I just want so much for Ty and Tripp and I know that through prayer all things are possible.
Walking into choir practice I saw nothing but blue shirts and I almost broke down right there...During the Sunday service, there is always a children's story, the kids come down and Bro Joel or Mrs Anita will talk to the kids about something and typically have a visual aid, magic trick, etc. (just to give you some logistical details - Sam and I sit in the choir and Tripp is usually out in the congregation with the grandparents and Ty is in the nursery). When it was time for the children's story, one of the youth sitting next to me got up and left.... and then she returned with Ty for the children's story... (this was not normal) I turned to look at Sam and he did the same (as if we could read each others mind, "I'm thinking, do you know whats going on?" not really sure what he was thinking) and then we just sat and listened to the children's story. Bro Joel made some puzzle pieces for the kids to put together and it had John 9:3 painted on them, once the kids put them together he told them about the story of the blind man in John chapter 9:
When Jesus' disciples ask him "who sinned, this man or his parents that he was born blind" and Jesus tells them "no one sinned but this happened so that the works of God may be displayed in him" then Jesus heals the man and the man comes back and worships Jesus. He talks about autism and how there are lots of things that we don't understand but God has a plan.
By this time I am already tearing up and before I know it streaming tears and then everyone is looking at us bc we were asked to come down front and he & the church were gonna pray for our family. I can't tell you how much it means to us that people pray and how it helps us to know that there are others interceding on our behalf and for Ty on a daily basis?! That means more to me than anything in this world! Then we went down for lunch and had an amazing time visiting everyone and they presented us with a love offering ... speechless does not even begin to describe how I\we felt... I still don't know how to thank them ...I don't know how to express our gratefulness?!
You might be wondering what this has to do with autism or what this has to do with proving that God exists? Well a lot... so many people with autism or any disability feel isolated, families included... they feel like outcasts when it comes to daily activities because "normal" people just don't understand them and choose to look away rather than look with in. Some people choose to judge others parenting skills or just stare awkwardly at an outburst by a child who has no real form of communication. But our family, friends and church family have been so accepting to Ty! Even the kids and youth - I know they don't always know what to say or how to respond to some of Ty's antics but they want to be a part of his life and they want to play with him and love on him and nothing proves God's love more than that! I've seen kids, youth and adults come in the nursery on a Sunday morning and sit down and play with Ty and "talk" with him even when Ty gets in their face and just jabbers loudly - they talk to him, they don't run or ignore him, they look him in the eye and chat with him... If everyone in the world just stopped to listen to someone that we do not understand, what kind of place would this be? If we weren't afraid of things that we don't understand? If we didn't ignore issues and addressed them face to face... what could we learn? What could we show this world!!?? I think we would show them the love of God! Who better to follow than the man that hung out with outcasts! Selflessness is one of the hardest things to accomplish but it is our biggest testimony! We are surrounded by people with an attitude of selflessness and filled with the love of God! We are blown away by the love and gifts given to us by this amazing group of people and I hope that somehow I can express that in this post. Please know that we love all of you from the bottom of our hearts!!! We can't thank you enough for every prayer and every smile and hug that you send our way. We are blessed beyond measure! And I hope in someway I can return the favor :)
In our little church we have seen the love of God at work. We are surrounded by people who love us and pray for us on a regular basis and who genuinely care about the lives of people in this world. We have the most amazing preacher who has shown us all how to be a church, how to love, give and not judge and how to seek God. I have never seen someone so passionate and caring. He has an amazing wife and two kids that support him and are some of the most sacrificial people I know. I hope that as we get older, we will follow in their footsteps. The people that come to our church are all so willing to do whatever needs to be done. They love and encourage each other and help one another, serve the community and reach out to those who need it. We have never had a need come before the church that could not be met in some way. There are children, youth, young adults and those older than young adults (i love yall) that all participate and seek to do what God wants them to do. The youth group is so loving and accepting, they care about each other and love to have a good time! I work with our youth and kids at church along with other volunteers and everything that needs to be done is always taken care of and most times it's more than enough! I'm not just talking about money, these people pray and PRAY and PRAY... if you don't believe in prayer I want to challenge you to give it a chance. The bible says if you ask according to His will, you will receive. If we want/need something that is in line with God's will, He will provide and most times He will provide in abundance of what we could ever imagine!
This past Sunday was super bowl Sunday, at our church it is "Souper Sunday". This has been going on for some time and everyone brings soup and snacks and we have lunch after church and have always taken up a donation and given it to the youth or to a need in the community. Last year they called it Souper Sunday for Ty and everyone wore their blue shirts and they gave a love offering to help us with Ty's therapy. I cried the day they called to ask if we were ok with this, and I cried the day of souper sunday. (i'm not one to cry in public). So this year when they wanted to do it again, I tried to prepare my self emotionally so I would not cry at the drop of a hat. I struggled with being on the receiving end of a love offering and I prayed alot. I prayed for prayers, if that makes any since. I just want so much for Ty and Tripp and I know that through prayer all things are possible.
Walking into choir practice I saw nothing but blue shirts and I almost broke down right there...During the Sunday service, there is always a children's story, the kids come down and Bro Joel or Mrs Anita will talk to the kids about something and typically have a visual aid, magic trick, etc. (just to give you some logistical details - Sam and I sit in the choir and Tripp is usually out in the congregation with the grandparents and Ty is in the nursery). When it was time for the children's story, one of the youth sitting next to me got up and left.... and then she returned with Ty for the children's story... (this was not normal) I turned to look at Sam and he did the same (as if we could read each others mind, "I'm thinking, do you know whats going on?" not really sure what he was thinking) and then we just sat and listened to the children's story. Bro Joel made some puzzle pieces for the kids to put together and it had John 9:3 painted on them, once the kids put them together he told them about the story of the blind man in John chapter 9:
When Jesus' disciples ask him "who sinned, this man or his parents that he was born blind" and Jesus tells them "no one sinned but this happened so that the works of God may be displayed in him" then Jesus heals the man and the man comes back and worships Jesus. He talks about autism and how there are lots of things that we don't understand but God has a plan.
By this time I am already tearing up and before I know it streaming tears and then everyone is looking at us bc we were asked to come down front and he & the church were gonna pray for our family. I can't tell you how much it means to us that people pray and how it helps us to know that there are others interceding on our behalf and for Ty on a daily basis?! That means more to me than anything in this world! Then we went down for lunch and had an amazing time visiting everyone and they presented us with a love offering ... speechless does not even begin to describe how I\we felt... I still don't know how to thank them ...I don't know how to express our gratefulness?!
You might be wondering what this has to do with autism or what this has to do with proving that God exists? Well a lot... so many people with autism or any disability feel isolated, families included... they feel like outcasts when it comes to daily activities because "normal" people just don't understand them and choose to look away rather than look with in. Some people choose to judge others parenting skills or just stare awkwardly at an outburst by a child who has no real form of communication. But our family, friends and church family have been so accepting to Ty! Even the kids and youth - I know they don't always know what to say or how to respond to some of Ty's antics but they want to be a part of his life and they want to play with him and love on him and nothing proves God's love more than that! I've seen kids, youth and adults come in the nursery on a Sunday morning and sit down and play with Ty and "talk" with him even when Ty gets in their face and just jabbers loudly - they talk to him, they don't run or ignore him, they look him in the eye and chat with him... If everyone in the world just stopped to listen to someone that we do not understand, what kind of place would this be? If we weren't afraid of things that we don't understand? If we didn't ignore issues and addressed them face to face... what could we learn? What could we show this world!!?? I think we would show them the love of God! Who better to follow than the man that hung out with outcasts! Selflessness is one of the hardest things to accomplish but it is our biggest testimony! We are surrounded by people with an attitude of selflessness and filled with the love of God! We are blown away by the love and gifts given to us by this amazing group of people and I hope that somehow I can express that in this post. Please know that we love all of you from the bottom of our hearts!!! We can't thank you enough for every prayer and every smile and hug that you send our way. We are blessed beyond measure! And I hope in someway I can return the favor :)
Wednesday, January 16, 2013
The Media...
I really don't like the media ... there are so many reasons but right now I am going to focus on Autism. The media does not tell the whole story on Autism (or anything else). Some will tell you all about the amazing talents and savant abilities while others show you mass murderers and call them mentally ill and psychotic?! This hurts my heart because it tells you nothing about Autism. I use to think that kids/people with autism where geniuses, all of them. That they had a large vocabulary and could learn anything in a matter of seconds but that they were just a little socially awkward. This is partially true and that's the problem with the media. We watch movies, tv shows and read articles that give us these stereotypes and then accept them as truth. We accept something to be true without really investigating ourselves. We are to busy to stop what we are doing until it hits us head on, then we read and research. I know it is true for me. I didn't really want to know about autism until it slapped me in the face and I still don't know everything but here is what I do know:
Autism is so much more than being really smart. Yes I have found that kids diagnosed with autism are very intelligent but so many of them struggle with daily activities. At times it is hard to speak because there is so much more going on with their bodies to even try and form words and have conversations. If you are in starvation mode, not just missing a meal but literally starving, then your body seeks food first and everything else is just nonsense until that need is met.
In the same way your body seeks food when it's hungry, sensory needs take priority. They need input, kind of like a lamp has to have some kind of power source, people with autism need a certain amount of sensory input to feel balanced and to be able to function. Ty loves deep pressure. He wants to be squeezed, tossed in a bean bag and wrestled with. Every person is different and a sensory need for one may not be a need for another. Ty also loves loud noises (to my knowledge - this is not common), he will bang cabinet doors, spin metal bowls and dump out toy boxes just for the clanking and banging sounds.
Eating is a struggle on so many levels. For us it started with getting past textures, it was months before we could get Ty off of baby food and soft foods into solids. He still prefers breads and we cut his food into really small pieces at meal times. He can still be a very picky eater and something that worked yesterday may not work today for a variety of reasons but you learn to go with the flow and just have lots of options. We celebrate meal times that are without any mishaps! It's the small things that we learn to focus on and regression is an ugly enemy that we fight. Pulling food out that has been chewed and throwing it on the floor is not as common as it once was but it's still there from time to time. Drinking out of a cup is something we are also working on, he has graduated to a big boy sippy cup and we are pretty much past drooling while drinking but he hasn't concurred drinking out of a regular cup without being drenched in the drink or gagging because it came out to fast. That doesn't mean he doesn't try! He can spot an unattended cup a mile away and do his best to suck it down before we can get to him. If he is quiet in the kitchen, we know he is up to something. :) There are so many families that have similar struggles. Allergies are a hot topic with Autism. The Gluten Free Casein Free Diet is something that I am sure everyone hears about and tosses around the idea. It works for some but not everyone. If your body is allergic to something it can cause alot of different things anything from a bad attitude to going into epileptic shock. Some people find the the GFCF diet frees their child from the behaviors that come with autism. Which then allows them to focus on language and other therapies. We have tried it but nothing changed for us. Not to say it won't work for you? I think anything is worth a shot at least once. But if you are thinking about this diet, you have to be all in or you will never know if it really works. Supplements are also a huge help! We love to use a drink called "Spark" that helps with mental focus and pro biotic supplements to assist with his digestion but everyone is different and I know that what works for some may not work for others.
Joint compression is another need that we attempt to meet on a daily basis. Alot of kids with autism love to jump and Ty is definitely one of those. Trampolines are great for therapy! It helps him get all the joint compression he needs and he loves it!
Swinging is a must in our house. Ty has always loved to swing, as a baby he would get mad if we removed him from his infant swing. So he literally had to grow out of it before we would remove it from our home. We graduated to Little Tike's swings in our play room and now we are using a hammock swing! Swinging sooths him like nothing else!
Language is tough. Some kids have an infinite vocabulary. Others struggle to say "hello". Ty desperately tries to communicate with us and is constantly getting our attention to have a conversation. He has a handful of words and he has recently learned how to nod his head for "yes" and shake his head for "no". He can say "momma", "iPad", "my iPad", "more", "uhah"(no), "ball", "bird", "papaw", "pabby"(but we don't use this any more - that's a whole nother story), and I am sure I am missing some but you get the gist. The main way he communicates now is by pointing and babbling until we understand what it is he wants. We have to make a point to pull the words out of him. If he can say something then we have to wait him out or he just won't talk. He will yell and fake cry to get his point across and to tell us that he's thirsty or wants his iPad but if we give in, then he will never use his words. I don't know if it's just that hard to get them out or if he's just testing us to see what works? Either way we have to be strong and wait for him to say or sign the things that we know he can and to challenge him to learn new ones.
There is alot of therapy time that comes with Autism. ABA therapy - Applied Behavioral Analysis, Speech Therapy, Occupational Therapy and Physical therapy are just a few. ABA therapy is my favorite, it is the one that really works best for Ty. It challenges him the most - I probably won't explain this right - and Maria help me out if you're reading this :). But the short version is that you find a behavior you want to replace and through a rewards system replace that behavior with a new one. You can also create a new behavior (signing, talking, etc) by using the reward system to bring that behavior out of him. I hope that makes since? It's not easy and it takes someone who knows what they are doing and who can resist his sweet southern charm but it works! Oh man does it work!
Sleeping is a constant struggle. Ty is now sleeping pretty good compared to where we started but going to sleep is a fight and staying asleep is not always easy? We have tried lots of things and are currently using melatonin to help him go to sleep some nights. There have been a few nights that he has slept in his room all night but most of the time he wakes up and comes to our room and sleeps with us until about 6:30am and then he is ready to wake up the world! I have found that most people with autism have some kind of sleep problems and the common recommendation is melatonin first and I'm not really sure what step comes after that?
But basically I am telling you all of this to say, Autism is not what I thought it was. It's not just being crazy smart! And my heart breaks every time I hear of a mass shooting and then they want to draw attention to the fact that the shooter was mentally ill and had autism. I really don't think that has anything to do with the tragedy. Unfortunately there are horrible things in this world. I am a firm believer in God and His son Jesus and because of that I know that Satan is real and alive in our world and that he will do anything to harm and deceive us. Let's not be deceived, lets look right through the media and let's see people as God intended. We are all His creation and whether you choose to believe in God or not, you have that option. But for those of you who do believe, God calls us to LOVE. To love everyone. So for me I really don't like the media because it causes me to see things in a way that I know is not true.
I saw a movie recently, one of the characters appeared to have autism. At one point in the movie he said that he hated God because he made him like this. And I broke, I cried and I wondered - what if Ty feels that way when he grows up? So many thoughts ran through my head. That's when I had to stop and tell myself, "it's just a movie". How many times do we all get caught up in the what ifs that we miss the right now? I know I do.... so yeah the media can put fear in anyone just look at all the chaos we are in right now? And why? Now I'm not trying to blame the media for all of our problems because I am the one that allowed myself to think those thoughts... but it just puts things back into perspective, I need to focus on the here and now not that what may be! :)
thanks for reading!
feel free to comment or correct me on anything that may be wrong :)
Autism is so much more than being really smart. Yes I have found that kids diagnosed with autism are very intelligent but so many of them struggle with daily activities. At times it is hard to speak because there is so much more going on with their bodies to even try and form words and have conversations. If you are in starvation mode, not just missing a meal but literally starving, then your body seeks food first and everything else is just nonsense until that need is met.
In the same way your body seeks food when it's hungry, sensory needs take priority. They need input, kind of like a lamp has to have some kind of power source, people with autism need a certain amount of sensory input to feel balanced and to be able to function. Ty loves deep pressure. He wants to be squeezed, tossed in a bean bag and wrestled with. Every person is different and a sensory need for one may not be a need for another. Ty also loves loud noises (to my knowledge - this is not common), he will bang cabinet doors, spin metal bowls and dump out toy boxes just for the clanking and banging sounds.
Eating is a struggle on so many levels. For us it started with getting past textures, it was months before we could get Ty off of baby food and soft foods into solids. He still prefers breads and we cut his food into really small pieces at meal times. He can still be a very picky eater and something that worked yesterday may not work today for a variety of reasons but you learn to go with the flow and just have lots of options. We celebrate meal times that are without any mishaps! It's the small things that we learn to focus on and regression is an ugly enemy that we fight. Pulling food out that has been chewed and throwing it on the floor is not as common as it once was but it's still there from time to time. Drinking out of a cup is something we are also working on, he has graduated to a big boy sippy cup and we are pretty much past drooling while drinking but he hasn't concurred drinking out of a regular cup without being drenched in the drink or gagging because it came out to fast. That doesn't mean he doesn't try! He can spot an unattended cup a mile away and do his best to suck it down before we can get to him. If he is quiet in the kitchen, we know he is up to something. :) There are so many families that have similar struggles. Allergies are a hot topic with Autism. The Gluten Free Casein Free Diet is something that I am sure everyone hears about and tosses around the idea. It works for some but not everyone. If your body is allergic to something it can cause alot of different things anything from a bad attitude to going into epileptic shock. Some people find the the GFCF diet frees their child from the behaviors that come with autism. Which then allows them to focus on language and other therapies. We have tried it but nothing changed for us. Not to say it won't work for you? I think anything is worth a shot at least once. But if you are thinking about this diet, you have to be all in or you will never know if it really works. Supplements are also a huge help! We love to use a drink called "Spark" that helps with mental focus and pro biotic supplements to assist with his digestion but everyone is different and I know that what works for some may not work for others.
Joint compression is another need that we attempt to meet on a daily basis. Alot of kids with autism love to jump and Ty is definitely one of those. Trampolines are great for therapy! It helps him get all the joint compression he needs and he loves it!
Swinging is a must in our house. Ty has always loved to swing, as a baby he would get mad if we removed him from his infant swing. So he literally had to grow out of it before we would remove it from our home. We graduated to Little Tike's swings in our play room and now we are using a hammock swing! Swinging sooths him like nothing else!
Language is tough. Some kids have an infinite vocabulary. Others struggle to say "hello". Ty desperately tries to communicate with us and is constantly getting our attention to have a conversation. He has a handful of words and he has recently learned how to nod his head for "yes" and shake his head for "no". He can say "momma", "iPad", "my iPad", "more", "uhah"(no), "ball", "bird", "papaw", "pabby"(but we don't use this any more - that's a whole nother story), and I am sure I am missing some but you get the gist. The main way he communicates now is by pointing and babbling until we understand what it is he wants. We have to make a point to pull the words out of him. If he can say something then we have to wait him out or he just won't talk. He will yell and fake cry to get his point across and to tell us that he's thirsty or wants his iPad but if we give in, then he will never use his words. I don't know if it's just that hard to get them out or if he's just testing us to see what works? Either way we have to be strong and wait for him to say or sign the things that we know he can and to challenge him to learn new ones.
There is alot of therapy time that comes with Autism. ABA therapy - Applied Behavioral Analysis, Speech Therapy, Occupational Therapy and Physical therapy are just a few. ABA therapy is my favorite, it is the one that really works best for Ty. It challenges him the most - I probably won't explain this right - and Maria help me out if you're reading this :). But the short version is that you find a behavior you want to replace and through a rewards system replace that behavior with a new one. You can also create a new behavior (signing, talking, etc) by using the reward system to bring that behavior out of him. I hope that makes since? It's not easy and it takes someone who knows what they are doing and who can resist his sweet southern charm but it works! Oh man does it work!
Sleeping is a constant struggle. Ty is now sleeping pretty good compared to where we started but going to sleep is a fight and staying asleep is not always easy? We have tried lots of things and are currently using melatonin to help him go to sleep some nights. There have been a few nights that he has slept in his room all night but most of the time he wakes up and comes to our room and sleeps with us until about 6:30am and then he is ready to wake up the world! I have found that most people with autism have some kind of sleep problems and the common recommendation is melatonin first and I'm not really sure what step comes after that?
But basically I am telling you all of this to say, Autism is not what I thought it was. It's not just being crazy smart! And my heart breaks every time I hear of a mass shooting and then they want to draw attention to the fact that the shooter was mentally ill and had autism. I really don't think that has anything to do with the tragedy. Unfortunately there are horrible things in this world. I am a firm believer in God and His son Jesus and because of that I know that Satan is real and alive in our world and that he will do anything to harm and deceive us. Let's not be deceived, lets look right through the media and let's see people as God intended. We are all His creation and whether you choose to believe in God or not, you have that option. But for those of you who do believe, God calls us to LOVE. To love everyone. So for me I really don't like the media because it causes me to see things in a way that I know is not true.
I saw a movie recently, one of the characters appeared to have autism. At one point in the movie he said that he hated God because he made him like this. And I broke, I cried and I wondered - what if Ty feels that way when he grows up? So many thoughts ran through my head. That's when I had to stop and tell myself, "it's just a movie". How many times do we all get caught up in the what ifs that we miss the right now? I know I do.... so yeah the media can put fear in anyone just look at all the chaos we are in right now? And why? Now I'm not trying to blame the media for all of our problems because I am the one that allowed myself to think those thoughts... but it just puts things back into perspective, I need to focus on the here and now not that what may be! :)
thanks for reading!
feel free to comment or correct me on anything that may be wrong :)
Friday, January 11, 2013
Resolution
Resolution by definition is a formal decision to do or not to do something. I've never really been one to make resolutions with the new year. Mainly because I know that at some point I will most likely find interest in something else or give up on ever being skinny, etc lol. However, this year is different, lucky 13 I suppose but this year I am going to challenge myself. I decided that if I share with the world (the 50 or so people that keep up with me on here) then I will be more accountable. I want to do a lot of things but first and foremost I want to educate others on autism. When we began this journey I read books, scoured the Internet, talked with friends and family, called parents of children that had autism, talked with friends of friends and soaked up any and every drop of information I could find. I still research and I still talk with friends and family, Dr's and therapists and I still feel like there is so much more to learn. The fact that Ty is starting school this August has me in somewhat of an overdrive mode. I want so many things for him but south Mississippi is really behind when it comes to teaching kids with autism and any special need. I've thought about moving, but how can I uproot my family? We have such an amazing support group here and our church is just flat out amazing! I really don't think we should run from a lack of services. Instead I want to enhance the services in our area. Why not, right?! It sounds easy in my head. I know it will be hard and it will cost a lot of money. But why not try? So my formal decision for 2013 is to educate others and create a place that Ty and kids like him can learn without the worries of "the system".
Now I know that I don't know everything and I know that I can only educate someone with the amount of knowledge that I already posses. So I will also be educating myself so that I can pass that education on to others. I am new to this and we are just getting started with the whole idea of "real school" so I am always open to any advice and suggestions on how to go about this whole process.
For those of you that may be reading this and need somewhere to start. www.austismspeaks.org is an amazing website. If you live in South Mississippi, we love The Children's Center at USM and Will's Way Behavioral on old 11 in Hattiesburg. Just somewhere to get the ball rolling.
thanks for reading! and wish us luck!
Now I know that I don't know everything and I know that I can only educate someone with the amount of knowledge that I already posses. So I will also be educating myself so that I can pass that education on to others. I am new to this and we are just getting started with the whole idea of "real school" so I am always open to any advice and suggestions on how to go about this whole process.
For those of you that may be reading this and need somewhere to start. www.austismspeaks.org is an amazing website. If you live in South Mississippi, we love The Children's Center at USM and Will's Way Behavioral on old 11 in Hattiesburg. Just somewhere to get the ball rolling.
thanks for reading! and wish us luck!
Wednesday, January 9, 2013
transition into school
So most of our journey with Ty has been in home therapies and the amazing Children Center at USM in hattiesburg. We recently added Will's Way of hattiesburg to his weekly list as well. But it wasn't easy getting here. I learned real quick that if you want something for your child then you will have to fight for it. There are places and centers that are just amazing (those listed above for example) but there are also schools and centers that have great programs and are not willing to let you in because of where you live. It shouldn't be like this. I feel that children with special needs should be allowed to choose the school that fits their needs. If every school put forth the same effort then there would be no need for this. However, most schools do just enough to get by. I have been told that they(a school) only have to provide a "Chevrolet" of services and not a "Cadillac"?! Really?! This infuriates me, how can you tell me that you are providing just enough therapy and services to get by, just enough to keep people off your back and that you are not willing to fight and provide the best??? How can I willingly allow my child to attend a school that has basically told me that they don't want to work, they don't want to challenge Ty to get the best out of him?! I know lots of teachers and I think they are all amazing to even go into this profession and special needs teachers are even held higher in my book. I know it's hard but don't take it out on the kids. I know that teachers aren't given the credit they deserve and that it is a job that comes with few rewards but know that this momma appreciates a good teacher. I know that if you teach you deal with so much more than classroom prep and children. You get worn out, you wonder if its worth it. But if you touch one life because you did your best, then it is worth it all!
I think that schools should be held higher standards and that one school should not be better than another, especially within a 30 mile radius. Why would they not all be able to offer the same services. Why would they not be able to offer the best services? Why would they not want to??? I just don't get it. It's going to be so hard to send Ty to Kindergarten in August. I am worried about him regressing, I worry about him not being cared for properly, what if he isn't challenged? What if they mistreat him? What if they don't care? I can fight for a lot of things and I will. But it shouldn't have to come to that. It shouldn't come down to IEP meetings and arguing to get something that my son needs and that other children like him need. Administrators shouldn't be seen as barriers to get through to get into good places. I shouldn't have to search for loop holes. Everyone wants the best for their children so why is the best dangled on a string and only the one that jumps the highest or grabs a ladder gets the prize?
I have made phone calls and been in "interviews" trying to get Ty into the best place I can find. But I feel like I'm on trial, trying to prove that he needs it?! Trying to explain what he can and can't do and what I think he needs. At the beginning of these meetings I am nice and try my best to ask all the right questions and get all answers I need without breaking into a female version of The Hulk. At the end of these meetings, I often feel like they look at me as a problem. They see me as someone who will not be satisfied so then why would they want to deal with me? Shouldn't they want parents that are involved? Shouldn't they also want my son to receive the best care possible so that he can learn and grow and be loved???
I'm all over the place in this post but I have so much to say and I am doing my best to say it without being offensive?! lol
On another note we are currently in a new Daycare center and things are wonderful! They have really taken to Ty and he seems to be doing really well :) And like I said earlier we are also still at the Children's Center and Will's Way in hattiesburg and things are going great there too! :)
thanks for reading! :)
I think that schools should be held higher standards and that one school should not be better than another, especially within a 30 mile radius. Why would they not all be able to offer the same services. Why would they not be able to offer the best services? Why would they not want to??? I just don't get it. It's going to be so hard to send Ty to Kindergarten in August. I am worried about him regressing, I worry about him not being cared for properly, what if he isn't challenged? What if they mistreat him? What if they don't care? I can fight for a lot of things and I will. But it shouldn't have to come to that. It shouldn't come down to IEP meetings and arguing to get something that my son needs and that other children like him need. Administrators shouldn't be seen as barriers to get through to get into good places. I shouldn't have to search for loop holes. Everyone wants the best for their children so why is the best dangled on a string and only the one that jumps the highest or grabs a ladder gets the prize?
I have made phone calls and been in "interviews" trying to get Ty into the best place I can find. But I feel like I'm on trial, trying to prove that he needs it?! Trying to explain what he can and can't do and what I think he needs. At the beginning of these meetings I am nice and try my best to ask all the right questions and get all answers I need without breaking into a female version of The Hulk. At the end of these meetings, I often feel like they look at me as a problem. They see me as someone who will not be satisfied so then why would they want to deal with me? Shouldn't they want parents that are involved? Shouldn't they also want my son to receive the best care possible so that he can learn and grow and be loved???
I'm all over the place in this post but I have so much to say and I am doing my best to say it without being offensive?! lol
On another note we are currently in a new Daycare center and things are wonderful! They have really taken to Ty and he seems to be doing really well :) And like I said earlier we are also still at the Children's Center and Will's Way in hattiesburg and things are going great there too! :)
thanks for reading! :)
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