a little background

hi, my name is mandy and I have two amazing little boys. My oldest son, Ty, has been diagnosed with autism (which is what you will read most about in this blog); I also have Tripp, who is an amazing little brother to Ty (who you will also hear alot about). I was encouraged to start this blog to document our journey through life and life with autism... my world has been rocked in last few years and i have responded in good ways and bad ... but Jesus has gotten me through all of it...

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.

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 :)

1 comment:

  1. Praying for you, cuz! Love that Ty-man and you too!