a little background
i hope i can be an encouragement to you, and for the friends and family that will read this - maybe this will keep you posted indepth on what Ty is learning! :) and the adventures of Tripp too
thank you for reading, and if you have any questions, comments or smart remarks; feel free to post them.
Thursday, December 12, 2013
senses
I know it's been a while since my last post. I just haven't made time to sit down and write but I was inspired by something I read. There was an article someone posted on facebook called "The boy whose brain could unlock autism". The boy's father is a neuroscientist and was in the process of creating a super computer that functioned like the brain (or at least that's my take on it). However once his son came along and started showing signs of autism he quickly used his talents to research and discover what causes autism and how to help his son. His son, like Ty, is affectionate and shows a desire for contact from family, friends and strangers. He likes to hug strangers and has no fear, he even slapped a cobra on the head in front of a snake charmer, darts out in traffic and really just shows an absolute disregard to things that others would show a natural feeling of fear. I immediately was drawn in to this article because of the similarities with Ty, I am often in survival mode and watching exits, people and surroundings as if I am the sole member of the secret service protecting a president! As I read each statement I could relate, I felt their desire to use what resources they had to find the source of what seemed to be cripiling their son. The article is very lengthy and goes into great detail about research and the science behind autism: causes, symptoms, diagnosis process, stereotypes, family connections, savants, etc. The part that stood out to me the most was this:
"According to the intense world perspective, however, warmth isn't incompatible with autism. What looks like antisocial behavior results from being too affected by others' emotions-the opposite of indifference."
Sam and I have had many conversations about how loving Ty is, how much he wants to be around others, he wants to play, he wants to interact and that goes against one of the main stays of autism. Diagnosis would say "loner" "keeps to himself" - so we have often wondered if it was something else.
But I think this article points out so well how wrong we are, the diagnosis of autism is correct but the criteria for diagnosis and understanding what is in the head of those with autism is completely wrong from the "normal" (i use this term loosely) point of view. Imagine going to see a 3D movie, this movie is so full of colors and objects that flow together in a way that you never imagined and that captivate you from the moment it starts. You are drawn in by the shapes and smells that they piped in to intensify the experience and your senses become overloaded. You are drowning in a sea of senses, so much that you can not concentrate on the narration that is full of mind blowing facts and the longer you stay in the theatre the harder it is to concentrate on anything. The smells become too strong, you close your eyes to stop the color explosions, you feel dizzy so you spin or rock with your eyes closed to level out the sensations until you have had enough and you run out eyes and ears closed until you get to a dark empty room where you can relax and process what just happened. Where you can detox from all the experience.
That's how most folks affected by autism feel daily. They get to a point where they just can't take it anymore and their behavior doesn't match with what society says is "normal" when dealing with these life situations. I've read articles that say the savants aren't really intelligent they are just lucky to have a talent that shows through their disabilities and that's all they can do - there's no real intelligence just mimic type behavior and a great memory, but I think the correct way of looking at this is to say that maybe just maybe their minds are much better than the rest of us and we have created a society that is so overloaded with sensory needs that we never really learned how to enjoy the simple things in life. We don't know how to use our senses properly and we have to get more and more of everything to even know how something smells or tastes. In the south we like to salt and season our food so much that when someone comes from another county or different state - they could possibly choke on what we consider just a touch over being bland. We aren't satisfied with sitting outside and playing with rocks because we have to have toys and objects to assist in our playing. Ty could play outside for days with nothing but the things God provides (and a ball) and I think that takes much more intellectual know how than to play with toys appropriately and take tests on paper or express feelings in an organized manner. Ty loves the iPad and can do more math, matching, puzzles, recognize numbers and letters and pick out rhyming words but he has very few words and on paper he doesn't test well and has yet to write his name. Does this mean he doesn't know his name or "can't" do all the things I've listed in the previous sentence? NO but on paper... on an IEP ... created by all of the "normal" folks he appears to be disabled and incapable of living a life pleasing to the rest of society and people feel sorry for him and others like him ... I can't help but think - in his mind, he sits back and empathizes for us, because we can't feel the world and enjoy all the things he does. He has so many feelings and emotions and is able to love and show love greater than anyone I know. Yes we have bad days and yes he throws tantrums and hits and laughs at the wrong time... and no I am not ok with him hitting someone and laughing.... but on the little things - the quirks that we look at and see a disability.... I think we need to look again and see his great abilities... how awesome it is to be satisfied with life... to be so overwhelmed with life that he has to take a break ... what it must be like to live like that ... to feel so greatly that you can't express how excited you are so you jump up and down and sing "eeeeeeee" to smile so big that your face has to hurt at the end of the day... to laugh so hard that you don't care who hears you... to love so much that everyone you see needs a hug and sometimes a sloppy kiss...it must be the life
We were created to give God glory and I prayed daily when I was pregnant for God to use Ty - I never imagined it to be like this - but He is our creator and He knows better than me how to live this life to the fullest.
I hope this makes since, sometimes its hard for me to really express what's in this head of mine. and there was so much in that article that I'd like to share - maybe in another post.
love yall, thanks for reading!
Tuesday, September 24, 2013
Priorities....
Autism is a challenge but it's not life threatening (not in our case anyway) and I want to provide Ty with what he needs and with what can help him without my selfishness and to focus on Gods will for his life and His will for our family and to reach out to those around us to show them the amazing love and grace of Jesus! But if I'm bogged down in "me" then how in the world can I help anyone else? How can I show them the love of Jesus? I think autism awareness is good but just like anything else... If it consumes you then what is it really about? Yes talking about autism and teaching others how to interact with Ty and taking Ty to therapy and providing him with all the things he needs are all amazing things, but if I put them before God and if I let them consume who I am, then what have I accomplished?
So how do I balance all of this? How do I not go overboard with my desires for my kids to have a good education? How do I give them what they need without creating selfishness? How do I balance an IEP meeting with Gods will? I don't know yet...but I'll let you know when I find out. I'm gonna start by laying it at the feet of Jesus... He has had a pattern lately of teaching me to let go of things .... And to be patient.
I hope all this makes since to you, bc it does in my head :). thanks for reading!
The name of the book is "kisses from Katie" and she also has a blog www.kissesfromkatie.blogspot.com
Everyone should read this book ;)
Monday, September 9, 2013
Autism is not a four letter word....
Autism is not a bad word and I hope we all have just a bit of the joy and unconditional love that I see in Ty and that everyone will look at life the way he does from time to time. Full speed, soaking it all in, living loud, not caring what anyone else thinks kind of life. :)
Rejoice in the Lord always; again I will say, Rejoice.
Philippians 4:4
Friday, September 6, 2013
school updates and the rest of life...
Kindergarten is a whole new world for this momma, Ty has settled in and seems to really love being in big boy school! Pick up and drop off for school is a new adventure. Every morning we drop Ty off in the pick up line and one of the teachers walks him down to his class. He is always so excited and ready to go, almost jumping out of the car and pulling the teacher to his class. All of the teachers in the pick up line have been so sweet and Ty always seems to make them smile with his big grin and overflowing energy but I'm still learning to not be nervous about this and to not hold up the pick up line as I'm trying to watch him walk all the way out of sight. We have just always dropped the boys off in their rooms at the daycares, I don't know if it's just part of being a momma or if I'm over protective but I am doing my best to let him grow up and do big boy things?! I got to spend a few hours in his class about a week ago and see some of the fun things that they do, PE is his favorite (lots of freedom and playing with balls!ha)and from what I have heard nap time is his least favorite. He's eating really well at school and we are still working on potty training; but one day we will get there! The last couple of days at car pick up Ty has been getting mad when he gets in the car? He is happy walking up to us but once he gets in and I buckle him in his seat, all heck breaks loose, he screams and cries almost like he use to on our way to Hattiesburg for therapy? I don't really know what started this? It could just be that he is tired and doesn't want to be buckled in, but not knowing just really sucks? I'm sure we will figure it out soon.
Brotherly love.
Tripp has been loving K-4 and is apparently a whole different child in the classroom than at home. He never fusses or whines, listens to all of his teachers and brings home smiley faces every day and is quick to tell me which one of his friends didn't bring home a smiley face. I am not complaining and I am very glad that he is a good student! I just need to learn what they are doing so that he will act that way at home, ha! Tripp has been very sweet to Ty and everything that he does, he wants his brother with him (minus the few times at home that the brotherly love turns to fighting) but all in all it does my heart good to see them so involved with each other and playing and communicating in their own little world. Here's a fun story: I was in the kitchen fixing lunches one afternoon and all I heard was a lot of giggles and the chains from the swing rocking in the playroom. Just a normal day. This went on for about 20 minutes. Well, the next thing I hear is the chian popping and the swing crashing to the ground? I run in and see them both wide eyed and staring at me with the swing sitting under them and Tripp says "it broke momma, but it was just an accident" I tried not to get mad and then tried not to laugh because I imagine that Tripp was hanging on with his good arm, (he broke his left arm a month ago when he fell about 14 inches from our indoor trampoline) and then once he got it twisted up enough for it to spin on its own lifting his feet and swirling around like a mad man. I have to give him props for his creative genious. I have seen him do this before(and it is kind of funny), and we talked about only swinging the "proper way" because the swing could break. So before I could even get on to him he says "momma, you know if you twist it up to much it will break"?! and I just shook my head and said "that's right, let's not do that again ok". Oh the joys of these two boys!
New things
Some other things that Ty has been doing lately is saying new words and stacking blocks independently! He was at my dads last weekend and when his Grandy would count "1,2,3..." Ty would hold his hand out and say "un" aka "one!" followed by cheers and laughter. And then we were at his granna's house another day this week and he was stacking blocks 5 or 6 high, on carpet, until they would fall over. Then he would giggle, wait for us to clap and repeat the process. He was also using both hands to steady the blocks and not just slap them up there, which is something I haven't seen him do! So lots of fun stuff going on here. Church has been lots of fun for the boys. Ty loves to hear the band play on Wednesday nights and usually dances and sings and makes a lot of "eeeeEEEeee" noises, it really makes me want to take him to a concert! He has also been going to childrens church and mission friends with Tripp and having a blast. Last Wednesday night he came home with a hand print picture and Tripp had finger prints all over his page and Tripp was not satisfied until we hung them both up side by side on the wall. He was so proud of Ty and just kept saying "momma, look how good he did!" Oh how I love to see them encourage, play and love on each other!
I guess that's all I have for today! thanks for reading! I hope you have an amazing day!
Thursday, August 1, 2013
just some thoughts
Tuesday, July 30, 2013
school worries
Ty starts school Monday!?!? I am so excited, nervous, sad, happy and scared all at the same time!? I know that every parent probably goes through this as their child/children start school. I have so many worries...What if he doesn't like it? What if he doesn't eat his lunch? What if I don't pack him enough for his lunch? How long will it take him to get use to the routine? Will his teachers understand him? Will he make friends? Will the kids play nice? Will he play nice? Will he take a nap? Will he leave his shoes on? Will he form new habits? What if he wonders off? .... I can go on and on.... but the main thing is, that up until now, Tripp has been with him. He has been our eyes and ears at the daycare to let us know if Ty had a good day or a bad day and to tell us what they did throughout the day. So what happens now?...
I want to know who his new friends are and who he played with on the playground, what he liked that he did that day, what he didn't like, who was nice, who was mean, what he wanted me to pack for lunch, what he learned, etc.... But unless I find some kind of high tech camera that they will allow me to strap to him and have a live video feed to my phone... I will just have to live with what the teachers and others tell me. I am partly ok with that... but there's just something about sitting down and having a conversation with him that would be so sweet. I love when I pick the boys up from the day care and Tripp has so many things to tell me - not all true - but still very entertaining stories! I usually can pull something out of him that really did happen during the day. Ty will chime in jabbering from time to time and can get to the point that he is just screaming and trying to out talk his little brother. I think those are the days that he is trying to tell me that Tripp's stories may not be completely true; whatever it is - I know he is trying to tell me something ... other times Ty will just sit and listen to everything Tripp says and glance out the window and say "bye-bye" to the trees we are passing, I'm guessing that these are the days that Tripp has more truth in his stories?! I don't really know? But the point is ... I am going to miss that... and I am going to miss the security of having them both together. Having Tripp there to help Ty and to help others understand Ty is something that I have taken for granted and now I am getting nervous. I'm not scared of the school or teachers or anything like that. I am actually very happy with the school and teachers and we found out that Dr. Bellapani (from Will's Way and The Children's Center) will be consulting with the school on behavior issues and I can't begin to express how awesome this is! She knows Ty and will be able to make sure he has a smooth transition and that hopefully there won't be very much regression because she will be able to correct behaviors that he will attempt to revert back to. Ty has a very mischievous way about him ... when he has a new teacher or therapists he does his best to get by with as little as possible. Once he knows, that they know what he can do, then he won't fight it and will do everything that's expected of him(within reason). So I'm not nervous or sad or scared because of all of that. It's just something new and I won't have my safety net. We will all be on new schedules and it's kinda mind boggling to process it all ... Tripp will be at a different school starting K4 and he hasn't really grasped why he can't go to school with Ty, he just knows that they are going to different schools this year. We have a had a few conversations about that and even though he is really excited about starting "big boy school" he still wants to know why he can't go to school with Ty. I sit down and explain that they won't be in the same class even if they were at the same school but I don't think he really understands that either... But with time he will.
So I guess what I'm trying to say is that I just want my little guy to talk to me. I know God has a plan and I know that one day I will sit down and have those conversations with Ty ... but I guess it would be nice to have a copy of that plan ... or least a piece of it...
Tuesday, June 18, 2013
Press on...
But if we think about life and about all the things that drag us down and all the "remember whens" that pop into our heads that make us have regrets or a new lapse in judgment ... what if we just pressed on? What if we didn't worry about what could have been and what should have happened? I know I can get bogged down in the "what if's" of this life. There are so many people, websites, Dr's, blogs, TV shows, movies, etc - telling us how to live - what "normal" looks like, what "marriage" looks like etc....etc .... But I know that the only Truth that I truly believe and that I should truly count on day in and day out... is The Word of God. So why is it so hard to stay focused and on track?
Autism isn't easy ... but it is a lot easier than other things that we could be facing. So I guess it's time for me to be thankful for Autism - now just because I typed this does not mean that I have convinced myself of this idea completely - but it is something I am working on. I should be thankful for all the things that come with it. I have two happy and very healthy little boys. I sometimes worry about them and wonder how their relationship would be different if Ty could talk and didn't have the barrier that autism places on his relationships ... would he be included in more things because he was able to ask to participate or would he not want to do them because its not something that interests him? Would he and Tripp still have that brotherly love that is so evident or would there be more sibling rivalry... would they have a stronger bond or would it be the same? Would we go more places? I could go on for days, but all that to say... how can I press on towards the goal when I'm stirring up so many questions? Who cares what anyone else says. We were all created to give glory to God and I plan to strive to teach my two boys just that. Now I am not perfect and I am not saying that I have all the answers or that I follow all the rules ... but Jesus never said that once you know everything - then you will be saved... He said to believe & confess .... I believe He can and will do great things with my family and I am excited to see what He has in store for us ...
I know I haven't been on this journey long and I know that I have a long way to go... but if you are anything like me and you are just beginning to face a new diagnosis or challenge in your life. You may just hit it head on and start reading and diving into every book, website, Dr, therapist, teacher, and parent you know searching for answers, searching for a cure, searching for the latest and greatest therapy. But really it all boils down to one thing - well first let me say - yes those things are good, but don't let it consume you, all advice is not always good advice, and just because it's on the Internet or in a book doesn't mean it's a good idea... I'm sure you know that, but sometimes we get desperate... but you should also know that God is real and whether you believe in Him or not, He loves you and He wants to have a relationship with you. He is the reason I can do this.
love yall! and thanks for reading!
Saturday, May 25, 2013
Graduation
But I think it's best if I just write about my hopes... I hope Ty is loved and cared for at school, I hope he makes friends and that he is challenged to reach his full potential, I hope that parents continue to teach their children how to love and accept others, no matter what challenges they face...I hope that teachers will have extreme patience with all their students and especially those that struggle to stay focused and on task...and I really hope that Ty loves school as much as he loves going to therapy...
Tripp has been an amazing little brother in all of this and I am so lucky to have such a caring and loving 4 year old, he encourages Ty in all the little things and initiates conversation and playtime, he wants Ty to participate in everything he does- and that means the world to me... I call Tripp an old soul and he really is an old man trapped in a 4 year olds body most days! ;)
Our families & friends have been extremely helpful in getting Ty where he needed to be and helping us physically get him there and constantly encouraging us to do the best for him and I hope you know how much we appreciate all you do! And to our amazing church family! Words cannot express how much we love each and every one of you! Thank you for encouraging Ty and including him in so much and pushing me to let him do more :)
We have a whole new adventure starting and I am ready to strap in and see where God takes us! Thanks for reading!!! I love y'all!
Tuesday, April 9, 2013
Love
Monday, April 1, 2013
School, Awareness and Life
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
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
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...
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
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
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! :)