Hope......

where would I be without any? I'd be lost and I'd never make it through a day. I have to have some kind of hope, at least a little. I've had to have a lot of hope the last several years. I had to have hope I wouldn't die, hope I'd have more children, hope they would live, hope I wouldn't die again, hope that Thomas would be ok and now hope that each every day, each and every minute we can make it through. That's also Faith! I have a wonderful church family that has been supportive. I'm not sure anyone ever truly understands the depth of what happens here on a daily basis. Even blogging about it can't give you a day to day, play by play. Some have been more supportive than others but I always find myself "feeling alone". I just read an article in a magazine where the woman describes her Autistic son and says that in the beginning she had the hope that she could cure him, teach him all those things he was lacking. One day she just realized, you just have to accept that this is how it is and while he can learn to do things he will never be cured. You just have to have hope that you can teach them all they need to know, that no one is going to take advantage of them and that you are making all of the right decisions.

Last week we found out that Thomas will attend the Autistic preschool next year. This means separating him and his sister. This is a huge deal for me and strikes me right in the center of my heart. Let me back track and start by saying that when they were born I had this image in my mind of how things would go.... don't we all? They would go to school together, play together and be best friends. That image is gone. Many people will say (and have said) well that doesn't mean that won't happen. Now this is true, but what I envisioned is no longer there. Any mother of a special needs child can relate. I have hope though that he will do the very best he can and when in Kindergarten he will blow them away. I have hope that his sister will make friends and finally be invited to play with other children her age. I have hope that she will no longer feel the need to watch out for her brother every single day. I have hope that when they come home, they will be each others best friend.

My mind often goes and therefore I can't remember if I mentioned the battle with sleep and medication. I have discovered that for children with Autism and on the Autism Spectrum this is a constant battle. Thomas is one of those. We are in the sleep battle now, not sleeping very well. At age 4 1/2 he can get up multiple times during the night and walk around the house. We have tried some different medicines that are to help with both the tantrums and the sleep. So far they have not been right for him. We are now trying something else, but I have hope. I have hope that we will find what works. I have hope that he will sleep like a normal child or at least all night very soon. I have hope that we will get his behavior calmed down, maybe not completely under control, but better.

If I've learned nothing else through this entire process thus far, I've learned this: Autism is ever changing, it doesn't magically go away and if I had that magic wand I can't tell you I'd use it. Thomas is who he is and who he should be. People are ignorant, but we have the resources to educate them. When it comes to my son, I have hope!

What It's All About?

Tomorrow is my 10 year anniversary and I've often wondered what is life all about? Not the meaning of life per say but life should be what you make it right? What about when things and obstacles get in the way of those dreams and ambitions you have set for yourself? Can you still keep your eye on the prize?

From the time I was a teenager (and this is because I don't remember much of my life prior to that) I've been very head strong. I always do what I want to do and typically don't let anyone or anything stand in my way. I will find a way to get something done when I want it badly enough. Here's a little background history on myself so you will know a little more about me....

When I was 15 years old I was dating a guy who I thought was ok but I was wrong. About an hour before my softball tryouts he raped me. It took me a very long time to tell anyone and by the time I did, they couldn't find him. I was a teenager who hated high school because I was overweight, not just overweight, but fat. I got picked on a lot. However, I did have a boyfriend from 16 to about 17 1/2. Again someone else I thought was a winner who turned out to be a loser! He beat me frequently, put me down and was just mean. He convinced me to leave home for 9 days and during that time he and his brother tattooed my arms with a sewing needle and ballpoint pin ink and thread. It was the most painful thing I think I've ever been through and as you know I've had three children. They put two things on one arm and one on the other. It wasn't long after that I went home and then left school. There was too much going on. I got my GED and walked the same year my regular graduating class did even though I finished long before they did.

I had already met my soon to be husband and we got married when I was 19. Exactly 10 months later my first son was born. Not long after having him they discovered that I had Endometriosis and would have to take Lupron which nearly killed me. It left me confined to my bed for months. I was determined to have more children but was told it would be nearly impossible. I decided to lose weight and lost about 115 lbs. I met every stubborn doctor along the way too. I finally went back and begged to have more children and was given one try. As most people know.... I had twins! But that wasn't going to be easy either. They were born at 35 weeks because my liver failed and platelet count dropped. Then the babies were in the NICU.

Thomas was in for 22 days and his sister was in for 15 days. When they were about 5 months old I had to have a partial hysterectomy. I should also mention that from 1999 until the present day I've had 10 surgeries. They are all for various things and various reasons and various parts of me. After getting everyone settled I continued on with something I had already started, my Bachelors Degree. I was doing this online! I had started just after I got sick from the Lupron in 2004 and I finished in 2007. I got a BS in Criminal Justice. I desperately wanted to go and walk across the stage, but that wasn't going to happen either....

There are so many other things that have happened in my life and I could keep going on. I guess my point is that life can always be worse and it's all about what you make of it. If you make it bad then chances are it will always be bad. If you keep a positive outlook and remember that sometimes you aren't in charge then good things will happen. I firmly believe that God has a plan for everything and one day I will be there with him and he will let me in on the secret, until then..... Life is good!

Put your walking shoes on

I have to say that I always a struggle with the title of these blogs for the longest time before I actually start writing. I could sit here and write forever, but coming up with a title takes a long time. One day I may just put a bunch of jumbled letters up there. Don't be surprised....well for those of you who know me, I'm just sayin.
Let me start this off by if you are a praying person, please stop for a moment and send one up for all of those 3, 4, and 5th graders taking the EOG's today. My 3rd grader is one of them and while he doesn't know it, I'm nervous for them!

So "put your walking shoes on" means just that. We are walking on October 9 in Raleigh, North Carolina in the Autism Walk. This is going to be a great event, I already know it. We are building a team called Team Thomas. I know, very original. It was my idea if you couldn't tell. We are in the process of having shirts made that will say All Aboard for Autism Awareness. We are going to be fundraising all summer and really hoping to get the community involved and raise awareness for Autism.

The walk is a 5K (3 miles) you can walk or run. You register online at http://www.kintera.org/faf/login/teamPageEdit.asp?ievent=425835&lis=0&kntae425835=E62CE36064844746BE41F240998D542D&page=view
It's $25.00 for the registration fee and they will send you a shirt as well, but like I said we are having our own TEAM shirts made! We would love to have an outstanding number of people there that day. There is also a kids walk.

All of the proceeds that we get from any fundraisers and the registration fees go directly to the Autism Society of North Carolina. Autism now affects 1 in 91 children. That number is falling still. It affects more boys than girls.

I've always said I don't know who reads this, who steps into our world, but if you are I hope you will consider joining us on October 9 and even this summer. Join Team Thomas!

There are just some people

I have known since Thomas was about 18 months old that he was "different and unique" and I embraced that and even tried to get him help at that age. Of course as some of our friends and family know the verdict of that help was deemed inconclusive. I grew up with a mother who has worked her entire life in the mental health profession. I have a BS in Criminal Justice but the majority of my elective classes that I chose to take were in mental health. It's a passion for me to embrace that and to teach others that you don't shut out people because they are different. The world doesn't revolve around you.... with that said, you also can't fix stupid. I'm just sayin.... So I'm going to hop on my soap box for a moment because there are some things I just need to say because in this world there are just some people.
Why is that when you try to ask someone to help you out with a fundraiser or you are ASKING FOR HELP (this will be a repetitive key phrase) they are going to try to get their 2 cents worth? Now what is that about? Someone please explain to me how it is if you come up with an idea and ask someone for a little assistance then suddenly it becomes something that is going to take up their time and therefore will cost you money.
Why is it when you are constantly telling people that you need HELP, I mean outright doing everything but screaming from your front yard, they will help everyone but you? They will send an email to your inbox telling you that you need to go and help someone else because they are in crisis.....like you have nothing better to do and there is not a thing going on in your life. Yet no one has come to your door (yes I mean mine) and offered to lend a hand, ask how things are....and I have 3 children
Why is that a neighbor must walk over here and when she finds out that your son has Autism that she feels the need to offer you pity (I don't want your pity) and then when asking what you are going to do when it's time for school..... I say he's going to the public school, has the audacity to look at me and ask: "What you are going to Mainline him?" WTH??? Seriously? I mean this is the kind of thing that I want my child to have to put up with? Yes I am sending him to school with his sister, he's smart, he talks, he knows things....why in the world would I not send him to school?

If this is the kind of thing that I have to deal with from people then what will it be like for him when he does go to school or gets older? How will people treat him? If I can't get "so called friends" to help or be there for me, him, us then who will be willing to be there for him in his life?

There is serious need for education on Autism, Autism Spectrum and what it is, what it does and how children are different, not retarded...not incapable....not handicapped.....just DIFFERENT!

Off the soapbox now and off to horse therapy!

His Biggest Advocate

There is a lot to be said for the relationship between siblings, even more so the relationship between multiples. Thomas' twin sister is his biggest advocate. I don't think we always give her enough credit for the amount that she understands. I've worried about how this is affecting her, I think it will be most detrimental to her. Even though she is the "youngest" I think she may always feel the need to be the protector or the guardian in some way. When we can't understand what Thomas is saying you can fully rely on her to tell you. If he's upset, you can ask her why. If he hurts her in some way, you can give her a moment and then she will simply say "it's ok..." He has often locked her in her room because he's mad at her or thrown all of her stuffed animals on the floor. She may try to help him in some way but he doesn't want the help and this frustrates him. However, she remains steadfast his biggest advocate. She continues to stand by his side, she continues to help him, she continues to understand what he says and feels and she keeps saying "it's ok..." I think a lot about the future and what his future will be like. I also think about my other two children and their futures, but not in the same aspect. We really want Sissy to have her own personality and to be able to learn to play and grow in her own personality. However when thinking of Thomas and his sister I often have to wonder how all of this will impact her life as she gets older. I can only hope that when they are both my age she is still sitting with him somewhere eating lunch telling him "it's ok..."

Baby you don't know what it's like....

Many times my friends or my family members have said to me or to my husband "you know I just don't know what this is like". Oh how true that statement can be. There is no way for us to show them what Autism is like.... or when asked "well what is it like?" What do you mean? I don't know what to tell you. I can explain to you what a typical day here is like, but every single person is different and unique in their own way, especially when it comes to Autism.

A typical day in our home would start with Thomas getting up somewhere around 6-6:30 in the morning. He immediately needs a diaper change (yes 4 years old and still in a diaper at night) you wouldn't want to change the sheets either! : ) He then has to tell David about a million things followed by breakfast....which is usually the same thing, Cinnamon Toast Crunch and a Yoohoo. YUCK! Now sometimes he differs, sometimes he just wants cinnamon toast, yes I see you laughing, I'm laughing too or I'd be crying. Every so often I bake a butterbraid and we eat that, although it takes him much longer to eat that. Morning routine is pretty much the same every day, watch some cartoons, get dressed and play. This also depends on what we have scheduled for the day. For instance, is there preschool? errands? appointments? etc...

Lunchtime, oh lunchtime... well they love chicken nuggets and fries. I mean what child doesn't, right? I just can't supply that every day. He will tolerate a PB and J, by tolerate I mean if I ask him first and he knows that is what he is getting then he will take a few bites and drink a Yoohoo and that's it. He'll ask for a snack later. He does like grilled cheese and macaroni and cheese. Wow, seems there is a theme here. If you haven't noticed, all he drinks is Yoohoo and occasionally water.

The afternoon, after their brother is home from school then they have "rest time" and I use the term loosely. The only one resting is me and sometimes their older brother. It usually results in a little play time in their own room with a movie! I'll take what I can get. I see you Mom's nodding your heads. Dinnertime I will cook something, whatever I can find or have taken out. I would say 50% of the time he will sit and eat it and the other 50% of the time we have to coax him in some way. He is very visual , so pictures work very well. We may draw it on the whiteboard in our kitchen and try to get him to just take a few bites. By the way, he is at a perfect height and weight, so he does eat during the day, just snacks that he picks and wants to eat.

During other times of the day he can have tantrums, sometimes they last a few minutes, sometimes hours. He does hit and throw. He is a screamer, he does stim (you can look that up), they change, he has done visual stimming, spinning, jumping, rocking, head banging, etc. Never once (praise God) has he hurt himself. I think he will always do the stimming, it will just change as he changes. He scripts (you can look that up too) which is basically where he repeats things, for instance a play our oldest son was in. Thomas knows the entire play verbatim. Sometimes he is content to just play by himself and he will say leave me alone, he will say don't look at me, go away. Other times he wants you right there in his room playing trains, reading books and doing whatever is on his mind right then.

He is incredibly smart and intelligent and looking back and a blog I wrote last year where I described my children I should have known then. I described him as a child who plays alone but knows things and speaks in long sentences. I talked about his fascination for cars, trucks and trains. I just wish I had known. He's fascinating, tiring, loving and just incredible!

The Diagnosis....Thomas

So we've switched gears here and moved from focusing on myself to focusing solely on my now 4 year old son, Thomas. Before I used no names, but want you to really get a feel for who he is. He is one of my twins (the boy in the set) and from the get go, the sicker of the two. Thomas was diagnosed with Autism Spectrum Disorder on March 30. His diagnosis is Aspergers Syndrome. You will find that now I will probably (try) to blog every day because I have a lot to say about Autism. I am on Facebook, but there you can't always express how things are going or what you are feeling. Raising an autistic son is not easy. It's demanding, time consuming and literally sucks the life out of me. He needs me for just about everything right now and I say right now because my main goal is to help him to be able to function normally (whatever that may be) and do the best he can for himself.
Right now in the world Autism affects 1 in every 91 children. That is an astonishing number and it's growing. It affects more boys than girls. For us, I believe that it is genetic.....I'll leave it at that for now. I believe in the theory of developmental instead of behavioral when it comes to Autism. I think that the brain has not developed properly instead of the fact that his behaviors are dictating what is going on.
His twin sister is his biggest advocate. She loves him, even when he hits her. She takes up for him. She speaks for him. She goes and finds him when he leaves the room. She loves him unconditionally...... if we all could be like that.
My oldest son is doing the best that he can. He is learning to cope with having a brother who often must get down from the dinner table to jump up and down or spin in circles. He often doesn't quite get why Thomas must flap in public, or scream out loud, but he's trying to. He loves him and he wants to work with him.
Autism is neurobiological and until just recently was a very rare thing that you just never heard about it. My goal is awareness, my goal is to help Thomas succeed, my goal is to help others see the world a lot like his twin sister sees him.....loving unconditionally!