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    Monday, January 14, 2013

    In reference to life....Worries and wants

    Its interesting how I view my life, there is my life before autism(that is Handsome before autism)... and my life after autism. Or one could refer it as life pre-autism, life post autism.
     To be honest my life before autism was less hectic and worry some. Yes I worried about my child, but not like the kind of worrying I do now. Life pre-autism, I worried that I would not parent him right, or that I wouldn't be able to spend as much time with him as much and it would affect him. I worried about him living in this world as it is, a world full of good yes, but also of so much hate and awful things taking place. Life POST autism, well the worrying takes on a whole different kind. I worry about Matthias not being able to communicate appropriately, I worry about what he eats, if he eats enough or not enough. I worry about him eating gluten as it will affect his behaviors, I worry about him getting hospitalized again because he literally can not have a bowel movement...  I worry about his education and IF he will be able to sit still long enough to learn. I worry about him being bullied at school by typical children or worse yet the adults. I worry about how he is being treated by his teachers and aides while I am not around. I worry about whether or not I can trust his bus driver to NOT drop him off by himself if no one comes out the door to get him (as he DID last week). I worry about him wandering off, or worse yet wondering off and going off with a stranger ( he has NO fear of strangers or any kind of danger). I worry about how he will be treated by this cold world and how lately they try to blame everything on children,teens or adults with autism. I have a real fear of my child growing up and being a teenager and him wandering off and some how being around police who do NOT understand autism and they command him to do something and won't because he doesn't understand a command and them shooting him or beating him up because he doesn't obey them. I could go on, the list is long....

    On most days, I try not to listen to the worrying chatter in my head. But on bad days ( or early hours of the morning in this case) I worry..... I worry because I lay awake at night because even though I have given my son his doses of Melatonin, he STILL wakes up, and even though I give it to him again and doesn't go back to sleep. Why? his stomach is bloated again because he hasn't had a bowel movement and he literally sits on the toilet for 2 hours trying to go. In between me writing this I keep going in and checking on him seeing if he's okay, checking to see if he has made any progress. But sadly he hasn't. Its now 3am and I have been up all night. Just as I was going to lay down for the night he woke up. Its hard to not be frustrated at 3am, even though I know its not his fault. But I am, mostly I am frustrated because we have to live in this world with autism. Autism that steals my sons existence and makes his life so hard, and in turn makes life hard for all of us. I cry for him and the trials he faces daily and all I can think.... is all I want for him is to be a boy and to not have to struggle anymore. I want him to WANT to play with his brother, I want him to be able to learn how to play simple board games and interact with me, his Dad and Sister and Brother. To REALLY interact, talk and communicate. I want our lives to be PRE-autism......................... PRE-autism... (before the vaccines kicked his body to the curb)

    But, as I sit here now at 12 noon with NO sleep, I know the truth... worrying and wanting will get us nowhere fast. In stead I push the worrying and wanting aside and push on for Matthias. I want to believe there is beauty in this world for Matthias and for him to experience it, so I push on to get the truth known about WHAT caused my sons autism and so many others. Push on to get him what he deserves from this country and I push on to working on those literal wants for Matthias that CAN be worked on and hopefully take place one day.

    To all my fellow Moms and Dads who live in this POST autism world, may I say how much I love and admire you all! Your stories I see on FB daily give me hope and courage to move on even on the bad days (nights). I hope I can be there for you all some days, please feel free to reach out I'm not far away! I listened to this song over and over again this morning, it helped me I hope it helps you!

    Much Love,


    Friday, October 12, 2012

    6 yrs seems like a lifetime in the autism world

    Sorry I've been missing in action for awhile friends, but I am back, LOTS has happened, we got married in April and its been a whirl wind of movement since then. Now we are a bit more settled so I can share more often.  So here goes :)

    Our perfect son Matthias Jessie 

    On this day 6 yrs ago, we received Matthias autism diagnoses. The official date was Friday, October, 13th 2006, yes Friday the 13th and trust me I am NOT one to be superstitious. I remember that day vividly in my mind and my soul.... its the day that changed our lives forever.... such heart wrenching news to hear about your child. To know that they will always have to depend on you, and the hopes and dreams you had for their life have just disappeared as quickly as she uttered the word........ AUTISM............

    Well when I was trying to figure out what exactly was wrong with Handsome I read many things that it could be, a hearing problem, different speech disorders,developmental disorders and of course autism. Well in the beginning of this year long process to get a diagnosis I really felt it was just a speech disorder, but I think deep down in my heart I knew....

    But the longer it took, the more I kept reading about autism and seeing different symptoms he had. Some things he did I had no idea were signs of autism, playing with toys inappropropriatly, i.e. picking them up letting them fall and watching it while it fell, screaming for no reason at all, waking in the middle of the night and not going back to sleep.... I could go on....

    But on this particular day, I remember just like it was yesterday. We loaded him up into the car, drove to down town Phoenix and waited to be seen by a Psychologist. In the waiting room he pointed out different letters he recognized ( pointing was the only thing he could do, he did not speak)_and again I remember thinking see he must be OK.....

    We waited for what seemed like hours. It was the same routine I had been through SO many times already,  'Fill out this paper work, stating all his history from birth to current, along with all of my history, his dads history, and all the information about my pregnancies and so on and so forth. After filling out the 15 page booklet :) we went back.

    She was a very nice lady and while we were in their she asked us lots of questions while she watched our son play. She pointed out things to me, that I never noticed before, like... " You see how he plays with those blocks, he doesn't play with them the way a child should, he picks them up looks at them and then throws them" Does he have an aversion to certain food textures?.....

    After many questions and lots of pointing out of what our son is doing. She sat back and asked me, "How long have you thought something may be wrong?" and I told her " Since he was about 15 months old"

    And then she said it, " Unfortunately, I see a lot of this lately...." pause... what seemed like the longest pause of my life...... " Have you ever heard of autism?"

    My heart sank " Yes.." and then she said it " Your son has autism.... I would put him in the category of Severe to Moderate, seeing as he is so young he may be able to make some progress" " Unfortunately , there is no cure, with time and therapy he might be able to make some progress and talk, but I can't say for sure what kind of progress he will make. I can tell you that the more intervention you get for him the better it may get." You should learn to accept that he may only progress this far and that's it and just accept him as he is......

    Through the fog of crying I heard what she was saying, but was so overcome with fear, grief and disappointment for my son. We sat and listened to her, and took all the paperwork she had for us and she walked us down the hall. I politely excused myself to the restroom, where I completely fell into tears. All I could think of was " How can this be?" Why my son? Haven't we struggled enough already? Why does Handsome have to struggle?  What will we do?

    I tried desperately to hold it together for my son, I didn't want to upset him. I was so glad Glenn was there cause Handsome really needed his daddy right then.... As I was about to walk through the door, I heard the Doctor tell his Dad, this is going to be a rough road, some children progress a little further, but most don't.... you will walk through a lot of feelings, and its okay that she is upset, let her work through it, I"m sorry this has happened, and she left.

    I dried my eyes and walked out and held it together, We really didn't say much on the ride home as we both  were in shock of it all. Glenn tried his best to reassure me it would be okay, I was just filled with so much grief I could barely speak.....He told me if I needed him he would stay, but I knew he needed to go to work. I felt so bad because I knew he was going through the same feelings I was, but I just couldn't think or speak, I was numb...

    I dropped him off, drove down the street parked the car in a grocery store parking lot and called my sister. I  remember when she answered the phone I could barely speak, she heard me crying and said " Are you okay? What did they say? Do you need me to come and get you?"

    I finally was able to form the words. " Matthias has autism" She told me to come to her store and she would meet me outside, she did and she comforted me and told me it would be okay. I remember finally getting home that night, and putting him to bed and watching him and thinking, whats going to happen to him? How will this ever be ok? I cried for what seems like weeks, but really only allowed myself a few days, and then I dug my feet in and read everything I could!

    Even though today its been 6 years since his diagnosis, it still feels like we are new to this whole autism world... it has forever changed our lives, I still grieve for my son and for the life that was stolen from him. I pray for complete recovery for him ever day, but also, the realistic side of me says, this may be as far as he me come... but even if it is, I will STILL fight for his recovery till the day I die. I would move the earth for my boys, and I'm praying one day, the Lord will do so for my sons recovery.

    To this day, autism is still an awful word to me, it is NOT who my son is, and I will NEVER accept it. My son was born a normal healthy boy, and because I chose to vaccinate him, he has autism.... his body could not handle the toxic overload and get rid of it, and its still difficult for me to swallow the fact that I willingly handed him over to them. But, because of him, his little brother was saved from it. Because with out a doubt! I know the same thing would have happened to him.

    This type of an anniversary is not a good one, the only good thing to come out of a diagnosis like autism, is the fact that you learn to cherish the little things in life, alot more then you ever did before! I'm still praying for my sons recovery and he has made AMAZING progress!!! I'm so proud of you Matthias! and I know you will accomplish great things this year!

    All my love!

    Sunday, February 26, 2012

    Yes we are still here :)

    I haven't posted here in ages, so sorry to have disappeared....LIFE has been a bit crazy :) But there have been lots of great things happening, one especially for me (and my boys) Last month I got engaged to the love of my life , the boys dad Glenn :) and we have been busy busy busy, planning a wedding for April 21st... only 2 months :) So if you think of us, please keep us all in your thoughts and prayers as we begin this beautiful journey together! Oh ya, and here's my ring :)

    Much Love,

    Lisa and boys

    Matthias through autism 2006 till today

    With this video

    Press play first, then press pause, and let it load for a few moments, otherwise the video will stop to load it alot when your watching it.

    This song speaks so much to me,to know the trials I have gone through are not .. Unredeemed by Selah

    Matthias Road to Recovery - This is what Faith can do! .