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!

Priorities....

I just started reading a book about a girl who leaves the US to go to Uganda for a 3 week trip and then at 19 decides to move to Uganda for good, adopts some of the children and starts a nonprofit to provide basic needs for anyone who crosses her path but mainly children. Her main objective is to share the love and grace of God in an impoverished village and country. (Thats a very condensed version of what ive read so far) What does this have to do with Ty and his journey? Well I'm getting there ... Let me give a quick run down .... When I was 19 I wanted to go to Africa, I knew that God had placed that desire on my heart and it was strong! (But I didn't go, for various reasons) After reading the first 8 chapters of this book, I am broken, I wish I had been able to make a trip to Africa when I was younger. But as I mom I now understand the concerns my parents had and why they were reluctant to push this desire of mine. So now, at 31, I will be taking a two week trip to Uganda with some amazing people to help out in some impoverished places this December. I am excited, nervous, anxious and scared all at the same time. I'm not scared or nervous for myself but because I will be miles away from my sweet boys and awesome husband. As I was reading the first few chapters of this book I realized that had I gone to Africa when I wanted to, I probably wouldn't be where I am today, so I am thankful that I was made to wait (something I'm not good at) or I most likely had these two amazing boys that have changed my life ... The more I read (Cody you were right I couldn't put it down) the more I was broken and the more I realized that I am a selfish person who has some messed up priorities. I still question God on Ty's communication issues and I pray constantly for him to talk. I feel so selfish when there are kids, of all ages, who know that if they don't get simple medications, vitamins and meals then there won't be a tomorrow - kids who are thankful for a stranger who plays with them and feeds them and takes care of their very basic needs because no one else can or will. And I am crying over a very healthy boy who only lacks the ability to speak clearly and has a few other sensory issues??? We have a home and an over abundance of clothes & food. My boys get a bath every night and have more toys than some kids could want and at the onset of any minor illness we are treated and back to normal within a few hours and at the most a couple of days. We have family and friends who love and support us and on top of that, I have a really good job. So how can I sit in the comfort of my home with my healthy boys and complain or question God? God is good and He has a plan and I need to get my priorities in check so I can follow Him in every area of my life and so I can teach my boys to do the same ...

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 ;)

Autism is not a four letter word....

Some of you may be thinking that the title of this post is silly, obviously the word "autism" has six letters and not four. Now, don't let me lose you on the mathematics of it, what I mean is that autism is not a curse word. I've had lots of conversations with lots of people about autism and most of them are good conversations but there have been some really awkward ones. One time in particular I was with my two friends, Carla & Heather, and a lady commented on Carla's hoodie (she was wearing Ty's hoodie) so Carla introduces her to me and tells me that she also has a son with autism, my response was "that's awesome". Which I quickly realized was not a proper greeting, her face dropped and almost had a look of shock as if I had just cussed her out. The smile on my face was probably adding insult to injury and I just continued with small talk about her son until I could quickly exit the conversation and place. Another time I was talking with a mom and she was describing her sons extra curricular activities and personality and quirks. The way she was talking and using certain phrases it was almost clear to me that she was trying to tell me her son had autism without saying it, so I asked if he had been diagnosed with anything. (If you know me you know I mean well and don't walk around accusing people of having autism or any other disorder and I never mean it as a insult if I ask). Again I received a look of shock and terror as if I had just said an ugly word. I quickly tried to explain what I meant and that I thought she was describing aspergers (which is what I thought) and that I did not mean to offend her in any way. These conversations aren't limited to the two instances I have so vaguely described, but these are conversations I have weekly, if not daily. I guess I just don't understand what conversations are socially acceptable? I am not offended by autism and I don't really understand why others are? I also don't understand the lack of knowledge about autism. I guess the media portrays autism with certain quirks, not making eye contact, throwing tantrums, being a loner, spinning, rocking, and being socially awkward. And yes, those things can be and are a part of autism but like I have said many times, every child is different. No one person is just like another. So to look at every person with autism exactly the same is to look at every person you meet exactly the same. So I guess I'm just saying there's no reason to be scared or offended by autism and that it's ok to talk about it and if I say that someone has some autistic tendencies I don't mean it as an insult but just an observation an possibly even a compliment ....

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

school updates and the rest of life...

K-5
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!

just some thoughts

I read an article last night on facebook with an excerpt from a book written by a 13 year old boy, with autism, called "The Reason I Jump" by Naoki Higashida. The article started out with David Mitchell a novelist who writes about learning to live with his son's autism. It goes into day to day stuff and some of it I can relate to and other parts I can't relate to at all. Just like Mitchell says in his spill about autism, every child is different so our experiences with autism will differ as well. Yes there are so many similarities and that's why we can have an official diagnosis that ranges in behaviors and abilities, it's just so broad and that's why its called a spectrum. That's also why it is so difficult to treat. He talks about all the different treatments and how you search and try anything you can get your hands on to help, to make since of it, to create that window of communication that will shape his world. And then I get to the part written by Higashida. Sam and I have had many discussions on why Ty has been diagnosed with Autism. He has great eye contact, pretty good social skills, loves to be around people, loves hugs and other things that typically you would not see in autism. Ty is happy, he giggles and tries so hard to communicate! So we have wondered what if its something else? But then he has had the typical signs early on and he does have the huge language barrier along with different quirks and small tantrums... but after reading the words from this 13 year old boy - I think us neurotypicals got it wrong (all the diagnosis criteria)... One thing is that people with autism prefer to be alone - He (Higashida)explains that the reason he goes off to be by himself is because he knows he is bothering those around him and he knows that they don't understand him and even though he wants to be near them, it's just easier to back off and give them space(these are my words but I'll paste the link so you can check it out). Another thing is repeating the same behavior - He says that he knows he isn't suppose to do that but it's out of his control and when he trys to control it and almost physically hurts. You can check out the link for the rest of the stuff ... So all of that to say, that I hope Ty never feels like he isn't wanted or that he is a bother. I pray that we will bring him up in an environment that focuses on all his abilities and strives to challenge him and pull all the good stuff out. I hope we learn from him and others like him how to really love and grow and become people that see each person as an individual and not as a diagnosis. To take that a step further I think we need to see each person not for how tall, short, skinny, fat, color, gender, background, religion or whatever else we may see ... but that we would see someone that God made. Someone He loves. Someone that Jesus died for and that we would pursue each person with the love and grace of God and nothing less.... http://www.theguardian.com/society/2013/jun/29/david-mitchell-my-sons-autism

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...

Press on...

"press on towards the goal" ... this has been in my mind for a few days. The Bible says in Philippians to press on towards the goal, to forget about what is behind you and press on to what is ahead. It seems simple. Don't look back, just continue to focus on what is in front of you and everything else is just history. Right?! I think about scary movies and how there always seems to be that one silly girl that just has to turn around and see what's chasing her and then .... well, you know, things just don't work out for her in the end. If she would have just kept her eyes on the exit and ran towards it without turning around, she woulda made it!(maybe) But that never makes for a good scary movie, so they always turn around....(just had the "turn around, bright eyes" lyrics run through my mind,.... and now your singing it...)

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!