2013 has been a busy year. It kind of feels like it has been two different years... or even more. It has not been a bad year nor has it been a super awesome year. I'm ready for the year to be over and yet I would be ok if it wasn't.
I'd say the best thing about this year for me is that I have been trying to take better care of myself. I can't always say I am doing my best at doing so. So in 2014 I will continue to improve my goal... better late than never and definitely better than not at all. I have also enjoyed being a substitute teacher and I am excited to continue to sub the rest of this school year and maybe the next.
Miles has continued to grow and change. Some days he growth seems to be in leaps and bounds and sometimes barely at all. He is still happy and healthy and it has been a good thing that we decided to seek an ASD diagnosis. For the most part friends and family have been very supportive... sometimes even overly. For most of us the diagnosis means nothing has change and for other he means a lot different. The most important thing I have learned is how important Autism awareness really is. I forget that many people don't really know what Autism is or have a thought about what it is.
Miles really likes his new therapy. I'm not sure how exactly, but therapy helped him make some changes. I can't even explain it but I have had people who know him and not know he is in therapy comment on how he has changed... growing! He has definitely been more vocal lately. Mostly sounds but I have heard some words and phrases. The other day I head him say "Happy Birthday!" not sure to whom but it was pretty cool.
I still can't believe Avery is 6! He is such a smart boy. Sometimes I can't even believe how smart he is really. He loves Kindergarten and he loves learning. He is learning how to read and write and I think that is the neatest thing. I can tell he is one of those type of people who knows things without really knowing how they know. He can just look at it a know... goes for math too. Some days I think he is my future actor, some days I think he would be a good teacher, but most of all I know he could do anything. Some days I swear he has a teenagers attitude... these are the days I don't know what to do with him... especially with all his smarts that come along with it! He is a caring little dude.
Andrew is still continuing to improve. It is hard to believe that the accident was 3 1/2 year ago. I think he is ready to get back to work, but he also enjoys being able to take care of his family. I think he will only keep improving. So much has happened since then many things are no longer noticeable while other things continue to stay. On the 3rd he will be celebrating another birthday that I am thankful he is around for. We celebrated our 10 year wedding anniversary and I am so happy that I have found a great guy to be with.
Tuesday, December 31, 2013
Thursday, December 19, 2013
Peaks and valleys
First I wanted to say that we got the results of Miles' genetic tests yesterday. All the tests came back negative, meaning that they did not find any hidden genetic reasons for Miles to have Autism.
So yesterday Miles had an off day or something. He had one big meltdown in therapy, but had an awesome day in school. We have been so busy the last week we had not had time to do a big grocery trip so we decided to go out to dinner. Miles usually does not have a problem going out to eat, he knows at restaurants food comes to your table. We make sure if he is really hungry that he gets something small right away and there is no problem.
Last night we decided to go to Old Chicagos for pizza. We don't go there often so we thought it would be a nice change... and Avery wanted pizza anyway. Miles was a little cranky when we got into the car and we figured he just wanted food. When we got to the restaurant we were seated right away and we ordered quickly but Miles would not sit down. I did not care if he sat he could stand by me and he was fine. Then he started crying. It almost seemed like it was for no reason at all. I tried to console him and he just started crying louder. I walked him to the front lobby of the restaurant and he was fine. We sat there for a little bit and then the fires we ordered him were ready. So I walked back to the table and he started screaming again. He did not want the fries. I tried to keep clam and offered him fries. I walked back to the lobby with a few fries and Miles. I thought if he calmed and then ate the fries he would want more and then he would return to the table. Doing this only made him cry in the lobby. I tried the table again... nope, the lobby... nope, outside... yes... until I would not take him to the car.
I tried taking him to the restroom. He is sort of getting into potty training so I thought maybe he had to go... or did go in his pull-up, because that can make him mad. He would not sit and he was not wet. He did not want his pants down at all. Now he is crying in the bathroom. Back at the table the food is there. At this point I try to give Miles a pepperoni... nope. Then the manager comes out and asks if we want to-go boxes..................... but mentions she does not want us to leave. Great!
Andrew takes Miles to the bathroom and also has no luck. The lady next to me asks me "how old are your boys?" I tell her and then she says to her 11-month-old baby (I asked her back) "she what I get to look forward to in a few years." To that I reply "Oh does your son have Autism?" Yeah that is a quick way to get her to shut up... and she says something about we all have rough days.
The worst part was a lady at different table. She was with a large group of people, probably the mom/grandma. She would glare at me and then type on her phone. It may not have been about Miles but it probably was. She could not stop looking and glaring and messing with her phone.
Then I semi-lost the battle and ended up with Miles in the car... both of us bawling our eyes out.
The thing that drove me the most crazy is that I know people around us probably just wanted us to leave. What they don't understand is that it is exactly like that kids throwing a tantrum because they want candy in the grocery store. If the parents give in (***cringe***) then the kid learns that EVERY TIME they have a tantrum at the store their mom will give them candy to shut them up. If I leave the restaurant, I have just given Miles his candy. He would then think EVERY TIME he has a tantrum we will leave the restaurant and go home. Therefore I went to the car with him, let him cry in there with me. We did not go home yet, but we did not stay.
So yesterday Miles had an off day or something. He had one big meltdown in therapy, but had an awesome day in school. We have been so busy the last week we had not had time to do a big grocery trip so we decided to go out to dinner. Miles usually does not have a problem going out to eat, he knows at restaurants food comes to your table. We make sure if he is really hungry that he gets something small right away and there is no problem.
Last night we decided to go to Old Chicagos for pizza. We don't go there often so we thought it would be a nice change... and Avery wanted pizza anyway. Miles was a little cranky when we got into the car and we figured he just wanted food. When we got to the restaurant we were seated right away and we ordered quickly but Miles would not sit down. I did not care if he sat he could stand by me and he was fine. Then he started crying. It almost seemed like it was for no reason at all. I tried to console him and he just started crying louder. I walked him to the front lobby of the restaurant and he was fine. We sat there for a little bit and then the fires we ordered him were ready. So I walked back to the table and he started screaming again. He did not want the fries. I tried to keep clam and offered him fries. I walked back to the lobby with a few fries and Miles. I thought if he calmed and then ate the fries he would want more and then he would return to the table. Doing this only made him cry in the lobby. I tried the table again... nope, the lobby... nope, outside... yes... until I would not take him to the car.
I tried taking him to the restroom. He is sort of getting into potty training so I thought maybe he had to go... or did go in his pull-up, because that can make him mad. He would not sit and he was not wet. He did not want his pants down at all. Now he is crying in the bathroom. Back at the table the food is there. At this point I try to give Miles a pepperoni... nope. Then the manager comes out and asks if we want to-go boxes..................... but mentions she does not want us to leave. Great!
Andrew takes Miles to the bathroom and also has no luck. The lady next to me asks me "how old are your boys?" I tell her and then she says to her 11-month-old baby (I asked her back) "she what I get to look forward to in a few years." To that I reply "Oh does your son have Autism?" Yeah that is a quick way to get her to shut up... and she says something about we all have rough days.
The worst part was a lady at different table. She was with a large group of people, probably the mom/grandma. She would glare at me and then type on her phone. It may not have been about Miles but it probably was. She could not stop looking and glaring and messing with her phone.
Then I semi-lost the battle and ended up with Miles in the car... both of us bawling our eyes out.
The thing that drove me the most crazy is that I know people around us probably just wanted us to leave. What they don't understand is that it is exactly like that kids throwing a tantrum because they want candy in the grocery store. If the parents give in (***cringe***) then the kid learns that EVERY TIME they have a tantrum at the store their mom will give them candy to shut them up. If I leave the restaurant, I have just given Miles his candy. He would then think EVERY TIME he has a tantrum we will leave the restaurant and go home. Therefore I went to the car with him, let him cry in there with me. We did not go home yet, but we did not stay.
Tuesday, November 26, 2013
Another step for Miles
Today we headed to Children's Hospital yet again. The pediatrician that saw Miles in September had noted that he wanted to have a follow up appointment. We thought it was kind of strange that the follow up was so soon and strange it was....
The doctor asked US why we were there for the appointment. I started to get annoyed that we had driven so far for nothing. I had no further questions about Autism. I did ask if he thought I should get Miles tested for food sensitives/ allergies and he said no. He first mistook my question as me asking if a gluten free diet would cure Autism... and that is not what I was asking. I just wanted to know if it would help out his G.I. system.
Then at the very end of our meeting the doctor recommended that we have Miles DNA looked at for any possible markers. Many times Autism goes along with other disorders. This way we can know if there is any other components to his Autism.
We decided to go ahead and have the tests done. I am a little curious and knowing how interested Andrew has always been in genetics I knew he would want to do it too. Plus we were already there and we wanted the trip to feel productive to understanding Miles.
He was a trooper and they got 3 little tubes of blood. So now we wait. We will hear results either way. If there is nothing someone will call us and if there is something the doctor said he will call us.
The doctor asked US why we were there for the appointment. I started to get annoyed that we had driven so far for nothing. I had no further questions about Autism. I did ask if he thought I should get Miles tested for food sensitives/ allergies and he said no. He first mistook my question as me asking if a gluten free diet would cure Autism... and that is not what I was asking. I just wanted to know if it would help out his G.I. system.
Then at the very end of our meeting the doctor recommended that we have Miles DNA looked at for any possible markers. Many times Autism goes along with other disorders. This way we can know if there is any other components to his Autism.
We decided to go ahead and have the tests done. I am a little curious and knowing how interested Andrew has always been in genetics I knew he would want to do it too. Plus we were already there and we wanted the trip to feel productive to understanding Miles.
He was a trooper and they got 3 little tubes of blood. So now we wait. We will hear results either way. If there is nothing someone will call us and if there is something the doctor said he will call us.
Sunday, November 24, 2013
Next steps for Miles Monkey.
Last month we finally got into Childrens' Hospital to see if Miles had any sort of diagnosis. For the most part I did can't care about getting any sort of diagnosis for him. I didn't want something to use as and excuse or anything that would make someone see him in a negative light.
To me a diagnosis would mean being more accessible to services. Without a diagnosis many therapies are not covered or even offered. A diagnosis would mean more help and more way I can advocate and be a voice for my child.
The diagnosis he received was Autism Spectrum Disorder (ASD) and Global Developmental Delay. There were a few other diagnosis mentioned something to do with sensory but I would have to get out the papers to remember exactly what it was because it is also a common diagnosis with ASD. We were also told that in the future he may be given the label of intellectual disability.
So what does this mean for Miles exactly? Well Global Developmental Delay means that he is delayed in 2 or more developmental areas. For Miles it is communication and socialization.
Autism is defined by the presence of difficulties in three (3) areas: social deficits, communication problems and repetitive or restricted behaviors, with an onset in at least one area by age three (3). It may or may not be associated with language delays or intellectual disability.
What I understand from the report we received about Miles is that he was given the diagnosis of ASD and not Autism because he has social deficits, communication problems and some characteristic behaviors that could indicated being on the spectrum.
Since diagnosis Miles has been able to have more therapy. This therapy is called Applied Behavioral Analysis or ABA Therapy. The purpose of ABA Therapy is to obtain wanted behaviors and eliminate unwanted behaviors. For Miles the wanted behaviors are communicating, attending to tasks and more appropriate social interaction. The unwanted behaviors are just the opposite, not communicating, lack of focus and strange social behaviors. Wanted behaviors are rewarded with something that makes Miles happy... mostly food, or swinging or spinning.
So far Miles loves it even though it is intensive. He will go 5 days a week for 2 hours a day. Then he goes to school for 3 hours a day for four days a week and 30mins of speech therapy on Friday. The thing I think I love about the ABA therapy is that is reflects on what they have been doing at school. It is like an extension of school with 1:1 support. His class uses the same ABA approaches. They work on getting Miles to 'mand' or request things he likes... as some of you know he is great at signing for CANDY. The great thing is that without consultation with each other both the school and ABA therapy came up with the same mands: swing, movie, and cracker/candy.
Miles second day of ABA was awesome. The therapist decided that maybe 'movie' was not an motivator for Miles. So she tried 'spin', and spin was a new sign. He started using spin spontaneously and that is what the want, and he did that in one day! She would have Miles put pegs in holes and then he would sign 'spin' and while sitting a circle that spins she would spin him, stop and he would do it all again.
To me a diagnosis would mean being more accessible to services. Without a diagnosis many therapies are not covered or even offered. A diagnosis would mean more help and more way I can advocate and be a voice for my child.
The diagnosis he received was Autism Spectrum Disorder (ASD) and Global Developmental Delay. There were a few other diagnosis mentioned something to do with sensory but I would have to get out the papers to remember exactly what it was because it is also a common diagnosis with ASD. We were also told that in the future he may be given the label of intellectual disability.
So what does this mean for Miles exactly? Well Global Developmental Delay means that he is delayed in 2 or more developmental areas. For Miles it is communication and socialization.
Autism is defined by the presence of difficulties in three (3) areas: social deficits, communication problems and repetitive or restricted behaviors, with an onset in at least one area by age three (3). It may or may not be associated with language delays or intellectual disability.
It is estimated that one (1) in every 88 children is diagnosed with
autism (and one (1) in every 54 boys), making it more common than
childhood cancer, juvenile diabetes and pediatric AIDS combined. An
estimated 1.5 million individuals in the U.S. and tens of millions
worldwide are affected by autism. Autism Spectrum Disorder (or ASD) is a
general term used to describe a group of complex developmental brain
disorders known as Pervasive Developmental Disorders (PDD).
ASD is a "spectrum disorder" because it
affects individuals differently and to varying degrees. <http://www.thearc.org/page.aspx?pid=2536>What I understand from the report we received about Miles is that he was given the diagnosis of ASD and not Autism because he has social deficits, communication problems and some characteristic behaviors that could indicated being on the spectrum.
Since diagnosis Miles has been able to have more therapy. This therapy is called Applied Behavioral Analysis or ABA Therapy. The purpose of ABA Therapy is to obtain wanted behaviors and eliminate unwanted behaviors. For Miles the wanted behaviors are communicating, attending to tasks and more appropriate social interaction. The unwanted behaviors are just the opposite, not communicating, lack of focus and strange social behaviors. Wanted behaviors are rewarded with something that makes Miles happy... mostly food, or swinging or spinning.
So far Miles loves it even though it is intensive. He will go 5 days a week for 2 hours a day. Then he goes to school for 3 hours a day for four days a week and 30mins of speech therapy on Friday. The thing I think I love about the ABA therapy is that is reflects on what they have been doing at school. It is like an extension of school with 1:1 support. His class uses the same ABA approaches. They work on getting Miles to 'mand' or request things he likes... as some of you know he is great at signing for CANDY. The great thing is that without consultation with each other both the school and ABA therapy came up with the same mands: swing, movie, and cracker/candy.
Miles second day of ABA was awesome. The therapist decided that maybe 'movie' was not an motivator for Miles. So she tried 'spin', and spin was a new sign. He started using spin spontaneously and that is what the want, and he did that in one day! She would have Miles put pegs in holes and then he would sign 'spin' and while sitting a circle that spins she would spin him, stop and he would do it all again.
Sunday, September 1, 2013
Down
I have been feeling a little out of sorts lately. I'm not sure what it is, maybe it is everything.
With everything I have been so moody and often short of patients... I usually have more.
Avery started Kindergarten this week. That is a big change for all of us. I put him in full day and think that will be good for him. I have seen positive changes in him and growing up changes in him. One of his recent developments is going night diaper free. Like everything, going diaperless was Avery's idea and he has been 99% accident free. Even though that is a great thing since he is almost 6 I feel a little sad that my baby is growing up. He also has been sleeping in his bed all night. It is like Kindergarten has flipped a switch in him. I also wanted to move his bed time up by an hour starting with 1/2 hour and school has naturally done that for me.
Miles goes back to preschool this year. I am more sad that it is his last year in preschool than the fact that Avery is in Kindergarten. I feel like this will be a good year for Miles and he will have a lot of growth in his development. One huge development is that Miles has now become his daddy's buddy. He has always been a "momma's boy" and probably always will, but he pushed me away the other day because all he wanted was his daddy and only Daddy could make it better. I am very happy for that but part of me is really sad that I couldn't make him better. On a bittersweet note, Miles is finding that communication is important. Here comes the frustrations.
Miles has also been getting into a lot of trouble... Trouble Monkey! Think of trouble people usually think of 2-year-olds get into. We skipped that with Miles. I keep having to remember that Avery was also that way. A good little 2-year-old and when he was 4 1/2 I wondered where it all came from. So in my family it is 'normal'. That combo and the communication issues then makes for mysterious melt down at the frozen yogurt shop and a birthday party. At least the people at the party were more understanding. The most likely childless couple walking across the parking lot made me feel like a crazy lady force feeding my child frozen yogurt... that I didn't even pay for... that is another story!
I don't think I have fully acknowledged yet that my mom is moving from Colorado to Arizona. I know in reality that she could have moved farther away but it is pretty far away. I farthest away I have been from my mom was when I lived in Denver and she was in Fort Collins. My mom drove to Denver anytime I needed her to watch my kids. I am happy for her new adventure in life and I know I can go visit. I know I am lucky to have her and thankful she did not die from her heart attack in 2000.
I am also freaking out about my cat Ziggy. He has been sick on and off his whole life. Lately he has been worse and then he gets better. He has been peeing in places he should not and it is stressful. One week he was doing really bad, I though it was it. I should have taken him in to the vet then, I should have had him put down then. Unfortunately the same week Andy's mom had a severe medical issue and me crying about putting my cat down seemed to be trivial so I thought I would wait. Waiting has just made it harder for me to do.
I feel I have a lot more to write, but I keep getting interrupted therefore messing up my sentimentality of what I want to say. Maybe it will come back to me.
With everything I have been so moody and often short of patients... I usually have more.
Avery started Kindergarten this week. That is a big change for all of us. I put him in full day and think that will be good for him. I have seen positive changes in him and growing up changes in him. One of his recent developments is going night diaper free. Like everything, going diaperless was Avery's idea and he has been 99% accident free. Even though that is a great thing since he is almost 6 I feel a little sad that my baby is growing up. He also has been sleeping in his bed all night. It is like Kindergarten has flipped a switch in him. I also wanted to move his bed time up by an hour starting with 1/2 hour and school has naturally done that for me.
Miles goes back to preschool this year. I am more sad that it is his last year in preschool than the fact that Avery is in Kindergarten. I feel like this will be a good year for Miles and he will have a lot of growth in his development. One huge development is that Miles has now become his daddy's buddy. He has always been a "momma's boy" and probably always will, but he pushed me away the other day because all he wanted was his daddy and only Daddy could make it better. I am very happy for that but part of me is really sad that I couldn't make him better. On a bittersweet note, Miles is finding that communication is important. Here comes the frustrations.
Miles has also been getting into a lot of trouble... Trouble Monkey! Think of trouble people usually think of 2-year-olds get into. We skipped that with Miles. I keep having to remember that Avery was also that way. A good little 2-year-old and when he was 4 1/2 I wondered where it all came from. So in my family it is 'normal'. That combo and the communication issues then makes for mysterious melt down at the frozen yogurt shop and a birthday party. At least the people at the party were more understanding. The most likely childless couple walking across the parking lot made me feel like a crazy lady force feeding my child frozen yogurt... that I didn't even pay for... that is another story!
I don't think I have fully acknowledged yet that my mom is moving from Colorado to Arizona. I know in reality that she could have moved farther away but it is pretty far away. I farthest away I have been from my mom was when I lived in Denver and she was in Fort Collins. My mom drove to Denver anytime I needed her to watch my kids. I am happy for her new adventure in life and I know I can go visit. I know I am lucky to have her and thankful she did not die from her heart attack in 2000.
I am also freaking out about my cat Ziggy. He has been sick on and off his whole life. Lately he has been worse and then he gets better. He has been peeing in places he should not and it is stressful. One week he was doing really bad, I though it was it. I should have taken him in to the vet then, I should have had him put down then. Unfortunately the same week Andy's mom had a severe medical issue and me crying about putting my cat down seemed to be trivial so I thought I would wait. Waiting has just made it harder for me to do.
I feel I have a lot more to write, but I keep getting interrupted therefore messing up my sentimentality of what I want to say. Maybe it will come back to me.
Thursday, August 29, 2013
The Unlikely Candidates
Follow My Feet - The Unlikely Candidates
There's a fork in the road in front of me,
At the crossroads of identity.
The Devil is standing to the left.
He says "Either way, they both lead to death."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
I've a friend who lies and steals and cheats.
Always taking more than he can eat.
He says "To get what I want, I would probably kill.
If I don't take it, somebody else will."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
There is no time,
Falling behind,
Plant harmony,
Or burn the tree.
I have a friend who loves humanity,
Braves bullets in war-torn countries.
He traded a life of wealth to help the poor and ill.
He says "If I don't do it, nobody will."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
I don't know where,
I don't know where,
Where my path will lead, but I'll follow my feet and
Hopefully they'll keep me on the ground and I'll keep walking to the sound
Follow, follow, follow my feet.
Follow, follow, follow your feet.
At the crossroads of identity.
The Devil is standing to the left.
He says "Either way, they both lead to death."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
I've a friend who lies and steals and cheats.
Always taking more than he can eat.
He says "To get what I want, I would probably kill.
If I don't take it, somebody else will."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
There is no time,
Falling behind,
Plant harmony,
Or burn the tree.
I have a friend who loves humanity,
Braves bullets in war-torn countries.
He traded a life of wealth to help the poor and ill.
He says "If I don't do it, nobody will."
And the high road's steady and steep,
And the low road's easy and deep.
Guess I'll follow, follow, follow my feet.
Guess I'll follow, follow, follow my feet.
I don't know where,
I don't know where,
Where my path will lead, but I'll follow my feet and
Hopefully they'll keep me on the ground and I'll keep walking to the sound
Follow, follow, follow my feet.
Follow, follow, follow your feet.
Saturday, August 24, 2013
Wake Me Up
"Wake Me Up" - Avicii feat Aloe Blacc
Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start
They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me
[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost
I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans
Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize
[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost
Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know
Guided by a beating heart
I can't tell where the journey will end
But I know where to start
They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me
[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost
I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans
Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize
[2x]
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost
Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know
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