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!
Thursday, May 27, 2010
Wednesday, May 26, 2010
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..."
Tuesday, May 25, 2010
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!
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!
Monday, May 24, 2010
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!
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!
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