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, March 26, 2014

Questions, Words and Medication

I've read a lot of stories lately about children and adults with autism who just start talking in full sentences after being silent for years. Not complete silence, most made some form of noise and communicated non-verbally throughout their life and then one day they just start talking. I love the excitement in these stories, I love to see the joy in the child and the parent as they express how great it is to finally know what it is that their child wants or needs throughout the day. They can ask them why they are upset and they get a very detailed response! Those with autism are relieved that they are understood and most of them are on a mission for others to understand them too. How cool is that?!

Before you read any further let me send a disclaimer - these are just my thoughts and crazy emotions and it is not directed towards anyone and I am just putting this out there to help you understand why we do what we do and it in no way means that I don't appreciate questions and interest in Ty and his education and learning process and I absolutely love when someone shows a genuine interest and will talk about struggles and progress with him! I love hearing and reading new stories of others who deal with autism and I am drawn to them on a daily basis. So please please don't misunderstand or misread what I'm trying to say... just spilling my guts on a screen...

Ty is 6 years old and still not able to communicate in the traditional way of using words. He has some words and will use them from time to time but mainly he makes lots of sounds and points or directs our attention to what it is he wants or needs at the time. He's very smart and has, so far, been able to successfully manipulate his world around him so that we understand most of what he is trying to say, but there are still things that just leave us wondering. When he was younger anybody and everybody would ask "Is he going to talk?" "Did the Dr say he would start talking one day?" "do you think he will talk" etc ... I can type out many different variations of the question but the bottom line is everyone wanted to know "when" and everyone wanted to help us get there by suggesting the latest therapy or sharing stories of others who learned to play a piano and sing, etc. But the older he gets the less frequent I am asked about him talking.

I use to cringe when I heard these questions, I would do my best to respond with my most educated answer but it hurt. Not that he couldn't speak and not that the question was asked but that I can see that he wants to. I can see that he is trying and that the words just won't form. I want to fix it for him and the questions just reminded me of it all again and again. They almost trumped all of the good things and all of the progress because here is this one thing that is so important. So when I hear about these stories of kids and adults who were once silent and begin to find their voice, it fills my soul with joy because I understand the struggle. I hear the kids that come out of the silence and explain what it's like to live in a world where no one understands you and how hard it is to function because of that. And every single one of them are different. Every child had different triggers that frustrated them or made them break down into a tantrum and every child had a different reason for not being able to talk and for not being able to communicate in a traditional way. It makes me think a lot about Ty, it makes me think about those hard questions that I don't like to hear and that I don't want directed towards him. Because if you or I am asking "Why isn't he..... or when will he ...." then it is almost pointing a finger at him and saying his way is wrong and you need to fix that - which I know is not the intention of the question, it's just me thinking. However, now that those questions aren't asked as much it makes me wonder if people have given up? Do others just see him as someone who will never speak? Do they think we aren't trying enough? I can go on and on with my own insecurities of what I think and wonder and of all the things that scare me and can have me balled up in a corner in a matter of minutes but what will that solve? So we try things, we get some things right and we mess other things up but we try. Sam and I have had lots of conversations about therapies, school, possible medications, etc and we go round and round deciding what to do, trying this new idea or method and deciding to either stick with it or realizing that it's not for us. I got to the point that I didn't want Ty to be someones test model to try stuff out on and that if he was happy then I was happy! Who needs all this other stuff and who cares if you like the way I do it... Everyone else will just have to learn how to work in his world or they can take a hike... lol. Not the best attitude, I know. Then we asked the question. Should we try medication? I asked teachers, therapists, Sam.... and then slowly went about the process. Researched, studied and started making appointments and started getting the proper paperwork together. So, we had a Dr's apt yesterday in Hattiesburg. The Dr was friendly, encouraging, straightforward and informative. Here's an excerpt of what our apt was like:

Me: (as Ty is climbing all over the Dr) He loves people and loves to hug and play...

Dr: Well he's not making eye contact with me right now and he really just sees me as a means to an end..

Me: *nod* (thinking... yeah you're right, yes he makes eye contact but not all the time, only when he wants to be engaged and he is currently just trying to get to the door)

Dr: So how does he communicate

Me: Well he points, uses some words, grabs us and takes us where he wants us to go...

Dr: *interrupts nicely* So can he tell you who he is?

Me: No (thinking? seriously are you not listening)

Dr: Can he tell you where he lives? who his parents are? etc

Me: No (thinking ?? these questions are not relevant to why we are here and...)

Dr: ok well he needs an ID bracelet

Me: ah ... yeah you're right... (thinking, i see what you did there)

Our conversation continued in this style, he would ask me questions that made me wonder where he was going, and then he would explain, so by the way you answered these questions this is why I am telling you what I'm telling you. Basically, look mom, this is your idea. Very clever Doc, very clever! Did my husband call you ahead of time and tell you how stubborn I am? Or are you just that good at reading people? He took his time watching Ty and asking questions and then trying his best to get us everything he thought we needed. It was one of the best Dr experiences we've had! He explained what he wanted to try and what side effects were possible and what a good reaction would be etc...

So we left with a prescription for a drug called Tenex, it's a blood pressure medicine that in a very small dosage - 1mg in Ty's case - can be used to treat ADHD symptoms and has had some good results. It shouldn't affect his blood pressure in this small dosage but it should just allow for him to not be as impulsive but to still be Ty. Today was the first day testing it out and I am beyond anxious to see my fella and know how his day was. His teacher has given me updates and a video and it's all been a good report but I wanna lay my eyes on him! I know there are lots of folks against medication and I understand, I was that person. But if this is what Ty needs and if he is still himself while on the medication then I am for it!

So here comes the questions, will he talk? My answer is yes. Not because anyone has told me this but because I'm just going to believe it. Going back to my disclaimer, I hope this doesn't discourage anyone from asking about Ty and asking hard questions, because I am more than willing to answer and to hear them and I love that you want to know! Just be sure you have the time for me to spill my guts or for me to give you bits and pieces as I am chasing my boys in and out of doors or staring them down on a playground to make sure they aren't eating trash or jumping from the top of the swing set .... I really hope all of this makes sense?!

Thanks for reading!!!