Yesterday after dinner we asked the kids to pick up the rocks in the backyard so it can be mowed. Easy enough right. The three of them (Roger, Lucy, and Porkchop) went out and started picking up rocks, sticks, toys, pretty much anything that could get thrown by a lawn mower. now the two little ones stopped once all the loose stuff was picked up (thats all they needed to do) but not Roger. I went out to check and see how they were doing and he is on his knees in the yard doing something this is the conversation that followed:
Me: What are you doing?
Roger: Picking up rocks like you said.
Me: OK why are your hands covered in dirt?
Roger: I have to dig the rocks up.
Me: why are digging up rocks?
Roger: you told me to pick up the rocks.
Me: I ment the loose ones, you don't have to dig them up.
Roger: But you said ALL the rocks that means these too.
He just kept digging up rocks once you get him started there's no stopping him and really he wasn't hurting anything. But yes I need to remember next time pick up the loose rocks. Wording is everything, Roger takes everything that is said literally so directions have to be very specific.
Friday, April 29, 2011
Thursday, April 28, 2011
Checklist
checklist-could-spot-children-with-autism-earlier
I have to wonder if we had this checklist years ago would they have caught Roger earlier? Maybe, maybe not. I do know I had to fight to get the referral for Lucy to a developmental pediatrician when she still was not talking at age 4. Originally they thought maybe autism for her but decided to treat it as a speech delay because they were unsure, now they say she does not really show any signs of autism and it was probably just a speech delay. With the help of the schools and speech therapy we did get her talking and now she doesn't stop, you would never know by talking to her that she didn't talk at one point in time. She is proof of what a good team in the schools and early intervention can do.
I have to wonder if we had this checklist years ago would they have caught Roger earlier? Maybe, maybe not. I do know I had to fight to get the referral for Lucy to a developmental pediatrician when she still was not talking at age 4. Originally they thought maybe autism for her but decided to treat it as a speech delay because they were unsure, now they say she does not really show any signs of autism and it was probably just a speech delay. With the help of the schools and speech therapy we did get her talking and now she doesn't stop, you would never know by talking to her that she didn't talk at one point in time. She is proof of what a good team in the schools and early intervention can do.
A Mothers Courage
She visits people across the US and in the UK. One of her first visits is to Temple Grandin, the next to a family in Wisconsin who has three boys on the spectrum. She visits different experts in the area of autism as well to see what their research is. The UK did an interesting study where they looked at the fathers and grandfathers job's of kids with autism. It was interesting to them that a good portion of father's and grandfather's were engineers.
Overall it is worth the watch.
Monday, April 25, 2011
Coming Soon
Roger has some books written for kids where one of the characters has autism. As he reads them I am going to let him take over the blog and tell you about them. :) I know he has just finished two so his reviews will be coming very soon. But as we all know it will have to be on his time.
Friday, April 22, 2011
IPAD Challange
Sorry for the sales pitch but Roger asked if I would share this on my blog.
Hi Everyone, Roger is participating in the IPAD challenge through the puzzling piece. He has to sell 60 pieces. He has sold 7. Once he sells the 60 pieces he gets a brand new ipad.
What is he selling necklaces and key chains. They are good quality Pictures below. Any combination of the two products count.
How you can help: Visit http://www.thepuzzlingpiece.com/products.html the two products that count are $20 each and towards the bottom. There is a space for challengers name enter Pam H. Camel place your order and that is it. Roger gets the credit for the order and is one step closer to getting an IPAD. Thank You
Hi Everyone, Roger is participating in the IPAD challenge through the puzzling piece. He has to sell 60 pieces. He has sold 7. Once he sells the 60 pieces he gets a brand new ipad.
What is he selling necklaces and key chains. They are good quality Pictures below. Any combination of the two products count.
How you can help: Visit http://www.thepuzzlingpiece.com/products.html the two products that count are $20 each and towards the bottom. There is a space for challengers name enter Pam H. Camel place your order and that is it. Roger gets the credit for the order and is one step closer to getting an IPAD. Thank You
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| KEY CHAIN (item # def456) - Price $20 Made of alloy and weighing 1.8 oz., this double barrel clasp key chain is worth its weight. It is a sophisticated key chain that does not require words to communicate its cause. For all the men who love a child with autism this one is for you. |
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| NECKLACE (item # abc123) - Price $20 This unique handmade, one of a kind puzzle piece is made from diachronic glass and measures 1 1/2 x 1 x 1/4". It comes on a 16" rubber cord, attached by a lobster clasp. All necklaces arrive individually packaged in a powder blue gift pouch. This necklace was made with lots of love and passion. My wish is that you enjoy wearing it as much as I enjoyed creating it. |
Wednesday, April 20, 2011
Sensory Overload
Yes I know I have been MIA here for close to a week but you know people get busy. I did want to share a youtube video about sensory overload. Keep your speakers on and watch this.
If you think about it if this was going on in your head it would scare the crap out of you. Roger watched it and said it was close for him. No wonder mid meltdown it seems as he can't hear us talking. He can't filter us out. We are still working on teaching him to know when it is about to happen so he can leave the area and maybe avoid the meltdown.
If you think about it if this was going on in your head it would scare the crap out of you. Roger watched it and said it was close for him. No wonder mid meltdown it seems as he can't hear us talking. He can't filter us out. We are still working on teaching him to know when it is about to happen so he can leave the area and maybe avoid the meltdown.
Thursday, April 14, 2011
Meltdown 101
As I type this we are in the mist of a meltdown. A bad one its been going for 2 hours without an end in sight. What started it he was online and found some naruto cards he wants. I said no and it was all down hill from there. The hissing, the growling, the physical ticks that always get so much worse. Pacing around the house, pulling things off shelves. But it couldn't have come at a better time. The ABA therapist was here to do our initial interview for services and she had a front row seat to it all. Roger presents as a normal kid. When she came in he was on the computer like any other kid his age, he gets good grades, and has great test scores. But when the ugly side shows it shows. Finally someone saw it and knew I'm just trying to help him and maybe if I'm lucky lessen these meltdowns. After what she witnessed it was yes you need services. She also said it must be exhausting for me but you know It must be exhausting for him. To not be able to regulate himself or get himself off of a topic.
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| one of the signs that has gone up |
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| another one mid meltdown since I am the one who made him mad |
Tuesday, April 12, 2011
Tired
I'm just tired. I'm tired of all the doom and gloom stories of autism and all the martyr stories. This is nothing about me and all about Roger. Yes I have to do things. I have to take him places and give up things but that is being a parent. I don't want to change him but yes I do want to help him cope.
Right now he has gotten to the point when he starts pacing or rocking he has no problems telling the person that's staring I have autism whats your excuse. He needs to have a voice.
My biggest question where are the adults? I know they are out there I have talked to them. Bring them into the conversation. Every report about autism is about the parents and what they suffer through. what about the kid? what about them. I don't care what I go through what about my kid what is he going through? That's what I want to know.
Right now he has gotten to the point when he starts pacing or rocking he has no problems telling the person that's staring I have autism whats your excuse. He needs to have a voice.
My biggest question where are the adults? I know they are out there I have talked to them. Bring them into the conversation. Every report about autism is about the parents and what they suffer through. what about the kid? what about them. I don't care what I go through what about my kid what is he going through? That's what I want to know.
Another Book
All I Can Handle: I'm no Mother Teresa By: Kim Stagliano
While I don't agree with everything she writes, its her book and her views. It was an interesting story though. At times I felt she wanted everyone to know she came from money so being broke really hurt. But you can relate with some of her stories. Like the one about the woman who left her kids in the car while she went inside a store. I've seen someone do that and went and found them and told them they were stupid. It was 90 degrees outside and really whats so damn important in a craft store. Or having a kid wander off been there done that. It's easy to read and follow so worth the time. I found myself cleaning a room reading some cleaning some more.
you can read an expert of her book here
While I don't agree with everything she writes, its her book and her views. It was an interesting story though. At times I felt she wanted everyone to know she came from money so being broke really hurt. But you can relate with some of her stories. Like the one about the woman who left her kids in the car while she went inside a store. I've seen someone do that and went and found them and told them they were stupid. It was 90 degrees outside and really whats so damn important in a craft store. Or having a kid wander off been there done that. It's easy to read and follow so worth the time. I found myself cleaning a room reading some cleaning some more.
Monday, April 11, 2011
Finally
Finally after what is now 4 months of phone calls we have our ABA intake appointment on Thursday. I only had to become a pain in the but emailing the doctors and the ABA office almost daily and they finally, finally called me. Now I just have to hope insurance will help pay for it.
I have no idea what is done in a ABA intake appointment but we will be figuring that out soon. The things that make us happy.
Earlier this week we found out our primary insurance is going to cover Rogers speech therapy. He will start that next week, and then as you already read it looks like ABA is going to come through. It took time to get here and I know I may have gotten here faster than others but I must credit his doctors who helped push things along.
I have no idea what is done in a ABA intake appointment but we will be figuring that out soon. The things that make us happy.
Earlier this week we found out our primary insurance is going to cover Rogers speech therapy. He will start that next week, and then as you already read it looks like ABA is going to come through. It took time to get here and I know I may have gotten here faster than others but I must credit his doctors who helped push things along.
Sunday, April 10, 2011
Opps
Well I guess with my parents article I "outed" my family so to speak but that's OK. If it puts a real family to it so be it because we are real. I will continue to use alias so if you know our real names pleas help us and refrain from using them. Thank You
Saturday, April 9, 2011
And the Dr.'s Continue
Just when I thought I have already been in every department in childrens hospital possible the speech results come back. There is a large gap between his comprehension (tests at average age 16) and pragmatic and fluency otherwise conversational speech (he tests age 7). Now I know I am in the shallow end here some peoples kids do not talk at all. Anyways he will now get speech every week for as long as it takes to get him up to level. But they also want us to go to audiology and have his hearing tested (trust me the kid can hear) and allergies. So just when I think I'm done with all the testing here comes more. I am starting to think they really are going to send me every department but hey we will have a baseline for everything.
Thursday, April 7, 2011
Good News for Virgina
Yesterday Virgina congress passed a bill along with 4 of the 5 amendments the governor made. You can read the article here. What does this mean it means that for the first time by law in the state of Virgina autism is a medical diagnosis. With that insurance companies must pay for appropriate medical treatments. The catch only kids from age 2 - 6. But it is a start. Rome was not built in a day and we have our first stepping stone. The Virgina Autism Project played a huge role in getting this piece of legislation passed, and to them we say Thank You!
This is bittersweet to a lot of us. While it does not help kids like Roger as they are too old it does help many families in Virgina. As I said it is a starting point, we have to start somewhere.
This is bittersweet to a lot of us. While it does not help kids like Roger as they are too old it does help many families in Virgina. As I said it is a starting point, we have to start somewhere.
Wednesday, April 6, 2011
Book
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| Roger with John |
Autism and Suicide
Ok I am going to apologize for the doom and gloom of this post but I think it is important. I think people often ignore this side of autism. We pay a lot of attention to the children at the low end of the spectrum the ones who we can see the disability, we can see that they have trouble talking, we can see that they struggle. By no means am I saying we should ignore or cast them aside. They need help but they get tend to get something more often that people on the opposite end do not get compassion.
On the whole opposite end we have our high functioning kids and adults, we may not be able to see it but they need our help, they need our compassion. A little bit of compassion goes a long way to tell someone you are important. On the high end we cannot always see where they struggle a lot of times it is socially.
I have been in multiple arguments with the school where they say social skills are not important. If you can pass a test you are fine. This is just the thinking that can make autism deadly. It is not the autism its self it is suicide. Suicide can happen to anyone anywhere on the spectrum. When you have a lack of or impairment of your social skills and people ignore you, avoid you, and bully you, the world becomes a very lonely place. That isolation can make people do drastic things. The rate of depression and anxiety is high. Some studies even suggest that the rate of suicide is higher than the general population. So when you add all the factors together absolutely autism can become deadly, but it does not have to be. Think about it next time someone does something that seems a little off. Maybe they have a unseen disability maybe they don't but hey they deserve a little respect. Every human being in this world is worth something and has something to offer lets start acting like it.
Just type autism and suicide in google there are over 244,000 hits. These are just some stories:
"Tyler Lee Long, diagnosed with Asperger's Disorder, a form of autism that causes social anxiety, was found dead in October, dangling from a belt in his closet. His parents, David and Tina Long, say the honor student was depressed about the abuse he had suffered at school. The teen complained of being mocked, pushed and punched for years, they said." Dodd, D. A. (2010, Lawsuit blames school in suicide: Parents claim bullying led to son's death and system didn't prevent it. The Atlanta Journal - Constitution, pp. B.1.
"Now, four decades after she was born and after that piece of music was written for her, Lea Nikki Bacharach has been swallowed up by the bad times. Having struggled all her life with the developmental disorder Asperger's syndrome (AS) - a form of autism - the young woman known as Nikki took her own life last week. Her body was found in her California home. " full article here
http://ballastexistenz.autistics.org/?p=60
On the whole opposite end we have our high functioning kids and adults, we may not be able to see it but they need our help, they need our compassion. A little bit of compassion goes a long way to tell someone you are important. On the high end we cannot always see where they struggle a lot of times it is socially.
I have been in multiple arguments with the school where they say social skills are not important. If you can pass a test you are fine. This is just the thinking that can make autism deadly. It is not the autism its self it is suicide. Suicide can happen to anyone anywhere on the spectrum. When you have a lack of or impairment of your social skills and people ignore you, avoid you, and bully you, the world becomes a very lonely place. That isolation can make people do drastic things. The rate of depression and anxiety is high. Some studies even suggest that the rate of suicide is higher than the general population. So when you add all the factors together absolutely autism can become deadly, but it does not have to be. Think about it next time someone does something that seems a little off. Maybe they have a unseen disability maybe they don't but hey they deserve a little respect. Every human being in this world is worth something and has something to offer lets start acting like it.
Just type autism and suicide in google there are over 244,000 hits. These are just some stories:
"Tyler Lee Long, diagnosed with Asperger's Disorder, a form of autism that causes social anxiety, was found dead in October, dangling from a belt in his closet. His parents, David and Tina Long, say the honor student was depressed about the abuse he had suffered at school. The teen complained of being mocked, pushed and punched for years, they said." Dodd, D. A. (2010, Lawsuit blames school in suicide: Parents claim bullying led to son's death and system didn't prevent it. The Atlanta Journal - Constitution, pp. B.1.
"Now, four decades after she was born and after that piece of music was written for her, Lea Nikki Bacharach has been swallowed up by the bad times. Having struggled all her life with the developmental disorder Asperger's syndrome (AS) - a form of autism - the young woman known as Nikki took her own life last week. Her body was found in her California home. " full article here
http://ballastexistenz.autistics.org/?p=60
Tuesday, April 5, 2011
Blog Party
http://www.5minutesformom.com/34651/ultimate-blog-party-2011/ <------ Sponsors
OK so I'm a little OK a lot late to the party but hey whats new, I'm always late get used to it. But better late than never.
I Guess I'm supposed to put a little blurb about what this blog is about well its about our families experience with autism. Mainly my oldest Roger but I do have 3 other kids who I am trying to figure out how to fit them in here don't want to leave anyone out. Maybe I will just give them their own day on here. I don't know yet.
I am just getting started here have only been online for 3 months and still trying to see where I am going with this. In the process of the blog party if I can bring a little bit more awareness and acceptance of autism that will be great.
If you came here from the giveaway linky I'm sorry I added to the wrong place and can't figure out how to get myself off there. I apologize for any confusion.
Monday, April 4, 2011
This is Our Autism
This is our autism. The one thing I have learned is everyone's experience is different. What it does to Roger is really affects his social skills. well lets face it they are almost completely lacking. He fixates on things and that can be a problem when what you are fixated on everyone around you has outgrown. He also did not get diagnosed until 11. It happens people. Everyone seems to focus on early intervention and catching it ear;y well what are those of us who don't know until they are older supposed to do?
What it is NOT:
It is not a get out of jail free card. I understand the impulse control is off at times but really he needs to learn to control them. You don't get to use autism as a excuse to fail. I was given an option at one point in time to let missing assignments slid. No hold him responsible. Yes he learns differently, yes his organization sucks but with help he can do it.
I refuse to just step back and believe ok my kid has autism so he can't do this this or this. Yes things are harder but really If you judge someone on everything they can't do you are missing everything they can do. If he was in an accident no one would expect me to sit back and give up and say well now you can't do this so why should I sit back and let this take over my child.
Yes autism is part of our life and it sucks sometimes, it is part of Roger and I'm going to stand with him on the idea that it is nothing to be ashamed of. Lets focus on all the positive things and help them learn to cope with the things they have trouble with.
What it is NOT:
It is not a get out of jail free card. I understand the impulse control is off at times but really he needs to learn to control them. You don't get to use autism as a excuse to fail. I was given an option at one point in time to let missing assignments slid. No hold him responsible. Yes he learns differently, yes his organization sucks but with help he can do it.
I refuse to just step back and believe ok my kid has autism so he can't do this this or this. Yes things are harder but really If you judge someone on everything they can't do you are missing everything they can do. If he was in an accident no one would expect me to sit back and give up and say well now you can't do this so why should I sit back and let this take over my child.
Yes autism is part of our life and it sucks sometimes, it is part of Roger and I'm going to stand with him on the idea that it is nothing to be ashamed of. Lets focus on all the positive things and help them learn to cope with the things they have trouble with.
Parents Goody Blog
Here is what I submitted to Parent's Magazine. It was one of the many stories chosen to appear on their blog for autism awareness month.
Not a "Dirty Little Secret"
Not a "Dirty Little Secret"
Saturday, April 2, 2011
Autism Awearness Day
Hmmm. Today is Autism Awareness Day. That's all I got people. Maybe I should have some post about it or what not but really Autism is my everyday. Most of you reading this it is your everyday as well. So yep I got nothing. Maybe I'll go to Total Wine they support autism awareness month and we all know mom needs her wine.
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