One of my favorites lines from Shrek the Halls is- "Momma always says Christmas ain't Christmas til somebody cries." For our family, you can delete Christmas and insert just about any family function where we all get together. Yesterday, we went to our grandparent's house and had a blast. It took Little Bug a little bit to get warmed up as there was a new person there and it always does regardless of the circumstances.
I am thankful for Grandma and Grandpa and all that they have given us- support, love, laughter, and sometimes, a good kick in the ass when it's needed. They truly are the kind of people who would never turn you down when you are really in need.
Then we went to Nick's parents' house. It was interesting- there was gender bias, unabashed teasing, and some accidental violence- talk about a hoot and holler. Its easier to logically break this down into- SPECTACULAR, GOOD, BAD, UGLY.
SPECTACULAR- Little Bug did great yesterday! He only had a few minor skirmishes with other kids- very typical skirmishes. He did a great job of finding a way to calm himself down when he was upset- by going to the toy room and lining up the cars on the garage. He is doing a great job of self regulating. He also said three new words- HOUSE, LIES, and HOSE.
GOOD- We all managed to be in the same house without any serious fights for 3 hours. That may sound sad, but its true and the way life works out.
BAD- The cousins showed up with bacterial pneumonia and didn't bother to tell us. This is something that we have struggled with Nick's family for all of Little Bug's life. We have consistently been lied to about illnesses etc.
THE UGLY- Although no one intentionally went out of their way this year to call me Little Bug's mom over and over, they did feel the need to not acknowledge me as an Uncle- only as Blake- and to call me she several times. This gets old as it is really passive aggressively done. They will do this to me and then wait for me to get upset and leave the room and apologize to Nick.
Little Bug had a horrible time on the way home- it was too many people and too much going on. He started biting himself while we were there and that only got worse once we were leaving.
The hardest part of yesterday was when one of the cousins began to yell at Little Bug, "What's wrong with you?? Why can't you talk?? Do you talk? What's wrong with you?" over and over again. I tried to explained that Little Bug doesn't speak like other kids, but he can communicate with his hands and a few words. But was overrun by others who thought it would be better to not talk about that and simply say Little Bug can talk some. This is going to end well.
Oh- I forgot to explain the accidental violence. Little Bug was sitting in the back seat with the left overs that we we taking home and decided he wanted to eat 3 dinner rolls. Fine with me- in fact, I celebrate when he eats. I grabbed the container to get them for him and accidentally hit Nick in the back of the head. I got the dinner rolls out and then when putting the container back, hit Nick in the face with the container. Nick was a good sport and didn't get mad- he even laughed.
All in all, we are pretty lucky. We got to see Grandma and Grandpa even if only for a few hours. Little Bug not only didn't hurt any of the children, but he actually played with them and had a decent time. Nick and I were able to laugh together and at each other. Little Bug ate lots of food. We have a lot to be thankful for.
Friday, November 28, 2008
Wednesday, November 26, 2008
Untapped Resources
On one of the blogs I follow, I read about how a family has discovered that their son can read- at 3. I was amazed and happy for them. I can definitely empathize with the uncertainty of never knowing what your child will accomplish and then being blindsided in a great way.
Little Bug often does this to us. In a previous post, I posted a picture of anatomically correct sharks he drew- at 2. They had gills and claspers- all in the right spots. All correct. I look at his puzzle skills. He can do jig saw puzzles now. Not the kind where you match the picture of the dog to the picture of the dog. But a 12 piece jigsaw puzzle or a 24 piece bear puzzles- without any visual cues. Who knew?
I remember my protests when they did his cognitive evaluation. My concern was how do measure the abilities of someone who is limited in speech? I firmly believe that the ability to speak doesn’t demonstrate your intelligence and that a lack of speech doesn’t demonstrate a disability. We have to do better than that. I look at what that family discovered about their son and what we learn about Little Bug and know for a fact that there are so many untapped resources there. We simply have to find a way to reach them.
On a totally different front, empathy has arrived- even if for a brief moment- to Little Bug. This is huge, as many children with ASD have difficulty with feelings and understanding that what you know and what someone else may know can be separate- separate thoughts, emotions, etc. Nick and I have had horrible colds this week and I stayed home from work yesterday. Nick went to work and left me and Little Bug sloth like on the couch- where we stayed.
I started coughing and then rubbed my chest. Little Bug looked at me and signed DADDY OWIE and then did his head tilt to indicate a question. I signed and said DADDY SICK and then pointed to my chest and signed and said HURTS. He rubbed my chest and then signed SORRY DADDY.
I was so excited for him. For the first time, he got that someone else had feelings and that they affected him.
Little Bug often does this to us. In a previous post, I posted a picture of anatomically correct sharks he drew- at 2. They had gills and claspers- all in the right spots. All correct. I look at his puzzle skills. He can do jig saw puzzles now. Not the kind where you match the picture of the dog to the picture of the dog. But a 12 piece jigsaw puzzle or a 24 piece bear puzzles- without any visual cues. Who knew?
I remember my protests when they did his cognitive evaluation. My concern was how do measure the abilities of someone who is limited in speech? I firmly believe that the ability to speak doesn’t demonstrate your intelligence and that a lack of speech doesn’t demonstrate a disability. We have to do better than that. I look at what that family discovered about their son and what we learn about Little Bug and know for a fact that there are so many untapped resources there. We simply have to find a way to reach them.
On a totally different front, empathy has arrived- even if for a brief moment- to Little Bug. This is huge, as many children with ASD have difficulty with feelings and understanding that what you know and what someone else may know can be separate- separate thoughts, emotions, etc. Nick and I have had horrible colds this week and I stayed home from work yesterday. Nick went to work and left me and Little Bug sloth like on the couch- where we stayed.
I started coughing and then rubbed my chest. Little Bug looked at me and signed DADDY OWIE and then did his head tilt to indicate a question. I signed and said DADDY SICK and then pointed to my chest and signed and said HURTS. He rubbed my chest and then signed SORRY DADDY.
I was so excited for him. For the first time, he got that someone else had feelings and that they affected him.
Saturday, November 22, 2008
Insurance
We all know that Insurance and Autism put together usually equals the following for many families:
- Debt, debt, and more debt- as many therapies aren't covered. One aspect that I think doesn't always get press is that even when it is covered, the sheer volume of co-pays due to the number of visits necessary is astronomical
- Stress- Families often spend a lot of time fighting with the insurance companies. I know that when it comes to ASD, I have had to get my employer involved as our insurance company gives us nothing but contradictory information and unclear advise.
- Denials- It is all too common to have claim after claim denied, even when you have insurance and have played by all the rules.
Personally, our company has a nuerodevelopmental clause on their policies which require our Insurance Provider to cover the cost of 36 visits a year. Additionally, there is no age limit on that.
Some of you may have noticed that the number I said was 36 visits- total for all specialists for an entire year. Once Little Bug starts going to speech therapy, he will use those up in 4.5 months. That leaves us with 7.5 months to pay for out of pocket- and we have insurance. We have good insurance.
I bring this up because of the following article:
http://www.chicagotribune.com/news/local/chi-autism-coverage_21nov21,0,4253235.story
I was so excited to hear about this and am hopeful that it will pass for them. I was also shocked by one particular section-
Further, Sen. Dale Righter (R-Charleston) argued the measure would cause the number of people diagnosed with autism to grow, therefore increasing premiums for other policy holders."I am not willing to place at risk a much larger group of people who might lose their health insurance through their employers in order to deal with this issue in this manner," Righter said.
First off, have any studies been done to show that states that mandate coverage for Autism have a dramatic jump in the number of children getting diagnosed? Maybe I am being naive, but I find it hard to believe that tons of people would go through the trouble to trick doctor's into diagnosing their children with Autism so that they can take advantage of this policy. Secondly, lets do the math to figure out the amount per person this would increase premiums:
4500- that's the number of families that qualify
36000- that's the coverage limit
12831970- that was the estimated population in 2006
$12.62 is the average increase per person. I could hang with that. In fact, I am sure that we do all the time. Every time an insurance company adds a coverage that wasn't previously offered, that trickles down to our premiums.
Friday, November 21, 2008
Occupational Therapy
Little Bug had his first session with his OT L yesterday. She wants to teach us brushing, but did caution that it would be done every hour and a half except when he is sleeping for two weeks. Other than that she didn’t give us too much information. Nick is going to follow up with her in order to get more information before we decide to go ahead with it.
She didn’t have much information about the self injury- she said that until he gets more speech, we won’t know why he is doing it. To me, that is a non answer. Little Bug isn’t in speech therapy and even if he was, it isn’t a miracle! It takes time and work. We are going to have a meeting with his therapist and our FRC as we don’t feel like enough is being done about these behaviors. When it comes to hurting others, the strategy is to prevent it- which means that while the intended victim doesn’t get harmed, someone still does.
Going back to the visit, L plans to have a snack time next time in order to help get Little Bug to try more food. She is also going to do bathing and dressing in future visits.
Right now, Nick and I are frustrated as we watch our sweet boy hurt himself for who knows what reason. Everyone seems to be pinning their hopes on speech. Well, let’s analyze this for a second. Children by the time they are 2.5 should have a vocabulary that is close to if not exceeding 300 words and be able to use two to three word sentences. Little Bug has 53 words, of which only 30 are spontaneous. The rest we prompt him into saying. While I am not saying that he will never reach that summit, I believe that we need an interim solution.
You can always have hope- you *should* always have hope. Hope that there will be change, hope that your child will achieve their fullest potential, hope that you will be able to help them overcome whatever challenges they face in life. But while you are hoping, don’t forget to work and plan and strive. Nothing is achieved without a great amount of work. I am the kind of person that always prepares for the worst. To me, pinning our child’s safety on speech therapy and the hope of speech is not an option. Now, we just have to have a plan.
She didn’t have much information about the self injury- she said that until he gets more speech, we won’t know why he is doing it. To me, that is a non answer. Little Bug isn’t in speech therapy and even if he was, it isn’t a miracle! It takes time and work. We are going to have a meeting with his therapist and our FRC as we don’t feel like enough is being done about these behaviors. When it comes to hurting others, the strategy is to prevent it- which means that while the intended victim doesn’t get harmed, someone still does.
Going back to the visit, L plans to have a snack time next time in order to help get Little Bug to try more food. She is also going to do bathing and dressing in future visits.
Right now, Nick and I are frustrated as we watch our sweet boy hurt himself for who knows what reason. Everyone seems to be pinning their hopes on speech. Well, let’s analyze this for a second. Children by the time they are 2.5 should have a vocabulary that is close to if not exceeding 300 words and be able to use two to three word sentences. Little Bug has 53 words, of which only 30 are spontaneous. The rest we prompt him into saying. While I am not saying that he will never reach that summit, I believe that we need an interim solution.
You can always have hope- you *should* always have hope. Hope that there will be change, hope that your child will achieve their fullest potential, hope that you will be able to help them overcome whatever challenges they face in life. But while you are hoping, don’t forget to work and plan and strive. Nothing is achieved without a great amount of work. I am the kind of person that always prepares for the worst. To me, pinning our child’s safety on speech therapy and the hope of speech is not an option. Now, we just have to have a plan.
Thursday, November 20, 2008
Autism- its all around us
Before I get to the meat and potatoes of this post, I wanted to share something I noticed- Autism. It's everywhere. One of my favorite things to watch is the Daily Show with Jon Stewart- I heart some irreverent, politically incorrect humor. I was listening to the show from Tuesday night, when low and behold, Autism came up. More specifically, Dennis Leary was a guest star on the show and was discussing his recent book and the chapter called Autism Schautism which incensed the whole community. He went on to defend himself stating that the paragraph was taken out of context. What he really meant is that there are parents who get their children diagnosed with ASD or ADD or any other number of syndromes so that they can get free help. Right, because that belief is so aptly expressed by calling people with Autism stupid and lazy. The mind reels.
Anyway, lets talk about Little Bug. He had a pretty good night last night. Only 1 meltdown, which is great. He had a school field trip to Odyssey yesterday- think Chuckee Cheese and McDonald's Play Place and bounce houses all rolled into one glorious sensory experience. He had a blast for the most part. He was able to deal for about an hour and half and things slowly went down hill from there. A friend recommended beefing up Little Bug's sensory diet and Nick and I think this is a great way to do it. They have slides that look a lot like the squeeze machine Temple Grandin came up with and another one that has a series of rolling pins. Basically when you slide down, the rolling pins run over your body and apply some good pressure. Little Bug loved these and had the route from the bottom of the slide to these slides mapped in his little brain after one trip.
As Nick and I journey down this path together, we realize more and more about Little Bug every day. We realize that his limit for commotion or newness is about 2 hours. After that, all bets are off. This is something that we are trying to get Nick's parents to understand, but there has been some resistance. For Thanksgiving, we told them that because there are going to be people there that Little Bug doesn't see often, we will come for three hours and then leave. We also created the boundary that if Little Bug has a meltdown, we would leave as there isn't a safe place for him there and you can't really escape people. So of course, they called and told us that dinner would be at 2:00 PM but to come down in the morning. *exasperated head shake*
Anyway, Little Bug has quite a few new signs-
Rainbow
Carrot
Pear
Grapes
Fruit
Lettuce
White
and five new words-
Ca-cat
No- nose
Juice
Dorie
Daddee
All said, he has 53 spoken words and 101 signs! This is amazing!!!!! Finally, Little Bug will begin OT today and Nick is going to push our OT L about the self injury and routines as we don't believe these have anything to do with speech, but his need for certain kinds of sensory input. More on that later.
Anyway, lets talk about Little Bug. He had a pretty good night last night. Only 1 meltdown, which is great. He had a school field trip to Odyssey yesterday- think Chuckee Cheese and McDonald's Play Place and bounce houses all rolled into one glorious sensory experience. He had a blast for the most part. He was able to deal for about an hour and half and things slowly went down hill from there. A friend recommended beefing up Little Bug's sensory diet and Nick and I think this is a great way to do it. They have slides that look a lot like the squeeze machine Temple Grandin came up with and another one that has a series of rolling pins. Basically when you slide down, the rolling pins run over your body and apply some good pressure. Little Bug loved these and had the route from the bottom of the slide to these slides mapped in his little brain after one trip.
As Nick and I journey down this path together, we realize more and more about Little Bug every day. We realize that his limit for commotion or newness is about 2 hours. After that, all bets are off. This is something that we are trying to get Nick's parents to understand, but there has been some resistance. For Thanksgiving, we told them that because there are going to be people there that Little Bug doesn't see often, we will come for three hours and then leave. We also created the boundary that if Little Bug has a meltdown, we would leave as there isn't a safe place for him there and you can't really escape people. So of course, they called and told us that dinner would be at 2:00 PM but to come down in the morning. *exasperated head shake*
Anyway, Little Bug has quite a few new signs-
Rainbow
Carrot
Pear
Grapes
Fruit
Lettuce
White
and five new words-
Ca-cat
No- nose
Juice
Dorie
Daddee
All said, he has 53 spoken words and 101 signs! This is amazing!!!!! Finally, Little Bug will begin OT today and Nick is going to push our OT L about the self injury and routines as we don't believe these have anything to do with speech, but his need for certain kinds of sensory input. More on that later.
Wednesday, November 19, 2008
Routine, Routine, Routine
Little Bug is definitely a creature of habit and has developed routines for everything. We may not have been informed about them and we may have even helped create them without realizing. The thing is, we now are bumping into routines that we didn't realize we had. Little Bug has been wearing his Lightening McQueen jacket a lot. Today, when they needed to take me to work, Nick tried to put on Little Bug's winter jacket. OH MY GOODNESS- the ear piercing screams! I was outside getting the car started and could hear him. Holy S*** batman, its 3:40 AM which means it is officially TOO EARLY FOR THIS. So of course, Little Bug got to wear his Lightening McQueen jacket- which is basically a glorified long sleeve T Shirt with a zipper. We are not talking winter weather protection here folks. I am all about working to help Little Bug become more accepting of change, but not so early in the morning with screams that wake the dead and may very well get us evicted or have the cops called. No joke, it sounded like someone was being murdered this morning.
We have also noticed that *everything* has become scripted by Little Bug. Maybe we are fools, but I feel like this happened so subtly that we didn't realize. Dumb parents. Anyway, he has to eat his food in a certain order- meat, then veggie, then starch (that is if he eats all three things and if he eats at all). He must play in the same pattern every day- swinging with parents, then floor time, then eat, then bath, then jumping, then getting dressed, then jumping, then cars, then swinging, then sharks, then jumping, then bed. I am certain that we have helped to create this rigidity, but I also believe that this is something he clings to as a way to help him deal with the sensory input and to have a sense of control when so much must feel out of sync or control to him.
It seems like we have been so focused on the more apparent things- self injuring and speech delays- that we didn't notice the little things. We are going to have to bring this up with his therapists and develop a plan as it is becoming a huge issue. If we need to go to school in a different direction due to construction, Little Bug gets incredibly upset and starts yelling and gesturing in the direction we could have gone. Any slight variation in routine that is not in his control is becoming a major deal for him.
There are days when I wonder how much has changed about him versus how little did we notice or understand before. I don't know how to say this quite right, but he has always been prone to "meltdowns" or "fits" for unknown reasons. From day one, we have always scratched our heads and been unable to explain the endless crying, the hours of screaming. At first we wrote it off as just a baby thing. Then it lasted longer. Then he was 18 months and still having the same kind of meltdowns he did before for just as long. Then he was 2 and no changes. Now we are coming up on 2.5 and still no changes. He still wakes up during the night. He still has "meltdowns" for no apparent reason that he can't soothe himself out of and we can't help. It makes me shake my head because I wish we would have seen. I imagine many parents of special needs kids are bitten by regret every once in a while. I think its better to shake the damn thing off and keep moving forward, as looking backwards is so easy and painful.
We have also noticed that *everything* has become scripted by Little Bug. Maybe we are fools, but I feel like this happened so subtly that we didn't realize. Dumb parents. Anyway, he has to eat his food in a certain order- meat, then veggie, then starch (that is if he eats all three things and if he eats at all). He must play in the same pattern every day- swinging with parents, then floor time, then eat, then bath, then jumping, then getting dressed, then jumping, then cars, then swinging, then sharks, then jumping, then bed. I am certain that we have helped to create this rigidity, but I also believe that this is something he clings to as a way to help him deal with the sensory input and to have a sense of control when so much must feel out of sync or control to him.
It seems like we have been so focused on the more apparent things- self injuring and speech delays- that we didn't notice the little things. We are going to have to bring this up with his therapists and develop a plan as it is becoming a huge issue. If we need to go to school in a different direction due to construction, Little Bug gets incredibly upset and starts yelling and gesturing in the direction we could have gone. Any slight variation in routine that is not in his control is becoming a major deal for him.
There are days when I wonder how much has changed about him versus how little did we notice or understand before. I don't know how to say this quite right, but he has always been prone to "meltdowns" or "fits" for unknown reasons. From day one, we have always scratched our heads and been unable to explain the endless crying, the hours of screaming. At first we wrote it off as just a baby thing. Then it lasted longer. Then he was 18 months and still having the same kind of meltdowns he did before for just as long. Then he was 2 and no changes. Now we are coming up on 2.5 and still no changes. He still wakes up during the night. He still has "meltdowns" for no apparent reason that he can't soothe himself out of and we can't help. It makes me shake my head because I wish we would have seen. I imagine many parents of special needs kids are bitten by regret every once in a while. I think its better to shake the damn thing off and keep moving forward, as looking backwards is so easy and painful.
Tuesday, November 18, 2008
Aggression
Little Bug had a really hard day yesterday. It all started at about 6 AM. He wanted milk and signed it and then DN gave it to him. Suddenly, he was horribly upset. We still don’t know what caused it. Screaming and crying without warning and for no apparent cause. He eventually calmed down in time to take a bath- great, we thought. We can work through this. Together- as a team.
Anyone who is familiar with Little Bug knows that he has recently become more and more opposed to baths. They are horribly upsetting to him- especially washing his hair and drying off. We also must stick to a routine. Yesterday’s bath started off badly. He was upset that he had to his PJs off and then upset about the diaper. I am not sure what to call it, but I know temper tantrum isn’t right. So, I will call it a fit. In his fit- of rage, fear, too much sensory input…- he damaged the bathroom by pulling some of the shower wall material off the half wall.
After the bath, DN brought him out to the living room to get dressed- as per usual. The thing is, we forgot to put on a short show for him. Little Bug lost it. He was in almost hysterics. Finally, we left for school and he fell asleep.
His therapist A came over yesterday and I showed her the damage. Luckily our landlord is only pissed, but glad that we were honest. His therapist looked at his ABC charts- Antecedent, Behavior, and Consequence- and decided that he needs a break in the afternoon. She also asked about speech therapy as she feels that a lot of his self injuring and violence is from frustration. Maybe I am being unfair, but I am not asking for a magic pill to erase this or some fish oil to cure him. I am looking for ways to help him. To. Keep. Him. Safe.
We have him on every waiting list we can find in both Pierce and King counties. We are doing all we can to get him sign language and have incorporated the PROMPT system into our home therapies. We are talking about a much loved little boy whose parents are trying to protect and care for and nurture. I had a friend reach out to one of their old therapists and she gave us some good ideas and offered to discuss this with her.
Cross your fingers as we trying everything we can right now for him.
Anyone who is familiar with Little Bug knows that he has recently become more and more opposed to baths. They are horribly upsetting to him- especially washing his hair and drying off. We also must stick to a routine. Yesterday’s bath started off badly. He was upset that he had to his PJs off and then upset about the diaper. I am not sure what to call it, but I know temper tantrum isn’t right. So, I will call it a fit. In his fit- of rage, fear, too much sensory input…- he damaged the bathroom by pulling some of the shower wall material off the half wall.
After the bath, DN brought him out to the living room to get dressed- as per usual. The thing is, we forgot to put on a short show for him. Little Bug lost it. He was in almost hysterics. Finally, we left for school and he fell asleep.
His therapist A came over yesterday and I showed her the damage. Luckily our landlord is only pissed, but glad that we were honest. His therapist looked at his ABC charts- Antecedent, Behavior, and Consequence- and decided that he needs a break in the afternoon. She also asked about speech therapy as she feels that a lot of his self injuring and violence is from frustration. Maybe I am being unfair, but I am not asking for a magic pill to erase this or some fish oil to cure him. I am looking for ways to help him. To. Keep. Him. Safe.
We have him on every waiting list we can find in both Pierce and King counties. We are doing all we can to get him sign language and have incorporated the PROMPT system into our home therapies. We are talking about a much loved little boy whose parents are trying to protect and care for and nurture. I had a friend reach out to one of their old therapists and she gave us some good ideas and offered to discuss this with her.
Cross your fingers as we trying everything we can right now for him.
Saturday, November 15, 2008
Internal Compass
One of Little Bug's more interesting abilities is directions. He can determine whether you are going the right way once you've mentioned the destination. For example, if we tell him that we are going to school, he knows where we are going and how to get there. I don't know know how he knows these things. School makes sense as I think he knows how to get there based on memory. Other places such as long distance drives to our grandparents' house makes even less sense as it is complicated.
Other places, such as where are the cats in the neighborhood are, is a bit harder to explain. We take our dog on at least three walks a day and during these walks, Little Bug will point out which houses have cats. Now, maybe he has a photographic memory or is just more perceptive than I am, but damn! I am lucky to remember to pay the bills, my family's birthdays, and the pin to my ATM card. His other bizarre map- fish. He can tell you which places have live fish. From the hospital, to the conservatory, where the pet stores are, and the ponds. It is truly amazing.
One of his coolest memory based and cognitive reasoning skills is puzzles. He is amazing at puzzles. He was able to do his ABCs and number puzzles at 1. He then was able to complete puzzles that weren't the chunky cut out kind- you have a picture of a butterfly and then you put the butterfly piece on top- nope, he can do the puzzles that make up a picture.
Its often very hard to get him to sit and focus. We have joked that he may need anchors on him to keep him in his chair at school. When it comes to puzzles and fish, he becomes zen. You put a puzzle in front of him and you can practically hear Eye of the Tiger as he begins to work on it. I am hoping that the school next year will be as willing to harness these obsessions as his Autism school this year has.
Other places, such as where are the cats in the neighborhood are, is a bit harder to explain. We take our dog on at least three walks a day and during these walks, Little Bug will point out which houses have cats. Now, maybe he has a photographic memory or is just more perceptive than I am, but damn! I am lucky to remember to pay the bills, my family's birthdays, and the pin to my ATM card. His other bizarre map- fish. He can tell you which places have live fish. From the hospital, to the conservatory, where the pet stores are, and the ponds. It is truly amazing.
One of his coolest memory based and cognitive reasoning skills is puzzles. He is amazing at puzzles. He was able to do his ABCs and number puzzles at 1. He then was able to complete puzzles that weren't the chunky cut out kind- you have a picture of a butterfly and then you put the butterfly piece on top- nope, he can do the puzzles that make up a picture.
Its often very hard to get him to sit and focus. We have joked that he may need anchors on him to keep him in his chair at school. When it comes to puzzles and fish, he becomes zen. You put a puzzle in front of him and you can practically hear Eye of the Tiger as he begins to work on it. I am hoping that the school next year will be as willing to harness these obsessions as his Autism school this year has.
Friday, November 14, 2008
A bit off topic
Normally, I will try to keep this blog as relevant to ASD and Little Bug as I can. But, as some people may not have realized, as gay parents, Prop 8 in California was very relevant to us as is the treatment of Thomas Beatie- a transgendered man who is having his second child.
Someone sent the video below to me and I watched it and was stunned- in a good way. I thought I would share it.
http://www.youtube.com/watch?v=5r7w9QimbwQ
Someone sent the video below to me and I watched it and was stunned- in a good way. I thought I would share it.
http://www.youtube.com/watch?v=5r7w9QimbwQ
Pain, or lack there of
One the most troubling things about Little Bug's ASD is his response to pain- or lack there of. He doesn't react to major pain. When he was 10 months old, he had a face lift procedure done on the left side of his face because he was born with a lymphatic malformation. Basically, the procedure involved lifting off the left side of his face and removing the cystic portions of the tumor. There were fibrous portions that ran through the muscles and nerves that ran down the left side of his face. Now, most children would have been quite lethargic and in pain after this procedure. Not Little Bug, when we were told he was awake, we were expecting to find him laying down in the crib barely awake and probably in pain. What we found was Little Bug jumping up and down inside the crib. The nurse looked at us and said, "I have never seen anything like this ever."
While the above seems like an extreme example, it is pretty typical for Little Bug. We took him to the beach a lot during the summer and while he wore sandals, it was not uncommon to find pieces of shells or glass in his feet later after the beach. It just didn't hurt him so we wouldn't know.
Little Bug often has bruises and cuts and scratches that can't be explained- because we don't see what happened and he doesn't tell us anything has happened. Last night was one more example. While I getting the table set and the food out for dinner, Little Bug played for 5 minutes max by himself in the living room, which for a typical 2 year old is not an unrealistic expectation or freedom. At dinner, I noticed that his pinkie finger was swollen to double the normal size and bruised. I have no explanation for this. I don't know what he could have done- we keep the doors locked and baby proofed, he doesn't have access to anything that can open and close on little fingers- like drawers, cabinets, etc.- as they are all looked up.
This breaks my heart. It makes me feel like a bad parent. But, most of all, it scares me. It scares me because Little Bug could have something serious going on with him and we would never know. That is why we co sleep with him. He used to get fevers of 104 when he was a newborn, but wouldn't cry or alert us to the fact that there was something wrong. We talked to the doctor, and she said that maybe they didn't bother him, but we needed to be mindful because he could have seizures. So he came into our bed.
It takes all my will power not to helicopter parent. We have to let him begin to become independent, but at what cost. I'm not talking about sleeping on his own or going to sleep over somewhere. I am talking about giving him small blocks of space and time- like 3 to 5 minutes- to play by himself. It is becoming increasingly hard to do.
While the above seems like an extreme example, it is pretty typical for Little Bug. We took him to the beach a lot during the summer and while he wore sandals, it was not uncommon to find pieces of shells or glass in his feet later after the beach. It just didn't hurt him so we wouldn't know.
Little Bug often has bruises and cuts and scratches that can't be explained- because we don't see what happened and he doesn't tell us anything has happened. Last night was one more example. While I getting the table set and the food out for dinner, Little Bug played for 5 minutes max by himself in the living room, which for a typical 2 year old is not an unrealistic expectation or freedom. At dinner, I noticed that his pinkie finger was swollen to double the normal size and bruised. I have no explanation for this. I don't know what he could have done- we keep the doors locked and baby proofed, he doesn't have access to anything that can open and close on little fingers- like drawers, cabinets, etc.- as they are all looked up.
This breaks my heart. It makes me feel like a bad parent. But, most of all, it scares me. It scares me because Little Bug could have something serious going on with him and we would never know. That is why we co sleep with him. He used to get fevers of 104 when he was a newborn, but wouldn't cry or alert us to the fact that there was something wrong. We talked to the doctor, and she said that maybe they didn't bother him, but we needed to be mindful because he could have seizures. So he came into our bed.
It takes all my will power not to helicopter parent. We have to let him begin to become independent, but at what cost. I'm not talking about sleeping on his own or going to sleep over somewhere. I am talking about giving him small blocks of space and time- like 3 to 5 minutes- to play by himself. It is becoming increasingly hard to do.
Thursday, November 13, 2008
Mr. Beatie has struck again!
(cue ominous music) My friends, I have horrible news- Mr. Thomas Beatie has done the unspeakable. He is pregnant again!
http://www.cnn.com/2008/HEALTH/11/13/man.pregnant.again.walters/index.html?iref=mpstoryview
Seriously though, good for him and congratulations on a deeply personal decision and a joyous occasion.
http://www.cnn.com/2008/HEALTH/11/13/man.pregnant.again.walters/index.html?iref=mpstoryview
Seriously though, good for him and congratulations on a deeply personal decision and a joyous occasion.
I heart NutriPals
Little Bug did not eat much again yesterday- 3 or 4 bites of cereal, 2 bites of spaghetti, and his handful size of fries. That's it for the whole day. DN and I are getting really stressed about this and are going to make a doctor's appointment and also talk to his OT.
I called my wonderful Grandma in an absolute tizzy over this. Her idea was Ensure. It has vitamins and minerals, and should taste okay. So off we went to the store. We bought NutriPals, which is basically the little kid version of Ensure. When we got home, I asked Little Bug if he wanted a milkshake- YUP! was his response and he ran to the couch. Sure enough, I gave it to him and he drank the entire thing in one LONG slurp.
After that his mood changed- he became less destructive and argumentative. The meltdowns over every little thing stopped. I don't know if what is going on is related to ASD, SID, or something else. Or maybe nothing at all. But, I was happy to have my Little Bug back. He probably won't be so happy once we go to the doctor's- oh well.
I called my wonderful Grandma in an absolute tizzy over this. Her idea was Ensure. It has vitamins and minerals, and should taste okay. So off we went to the store. We bought NutriPals, which is basically the little kid version of Ensure. When we got home, I asked Little Bug if he wanted a milkshake- YUP! was his response and he ran to the couch. Sure enough, I gave it to him and he drank the entire thing in one LONG slurp.
After that his mood changed- he became less destructive and argumentative. The meltdowns over every little thing stopped. I don't know if what is going on is related to ASD, SID, or something else. Or maybe nothing at all. But, I was happy to have my Little Bug back. He probably won't be so happy once we go to the doctor's- oh well.
Wednesday, November 12, 2008
Dinnertime=FRUSTRATION
Little Bug has become more and more restricted in what he will eat. He used to be the kid who you put a plate in front of him and he ate it- without question. His favorites used to be asparagus, artichokes, steak, chili, sharp cheddar cheese, prosciutto, etc. Now, he won't eat them or many of his other favorites- chicken teriyaki, oatmeal, yogurt, carrots, broccoli.
At this point, we are having to make multiple meals to find something he will eat. Last night, DN made Dixie Chili for dinner- one of Little Bug's favorites. He wouldn't eat it. So, I made him a PB&J- nope, not that either. He asked for cereal, but wouldn't eat that. I tried toast- no go. I tried banana- nope.
He ended up eating corn. That's it. That was his dinner. As a parent, I worry for him. We need to take him to the doctor's just to make sure that he doesn't need more vitamins or supplements. While I don't want to force him to eat, I also don't want him to have an iron deficiency or something else.
If anyone has suggests or tips, please let us know. His OT told us that he needs to try a new food at every meal. S***- at this point, I would like to amend it to Little Bug will eat *something* at every meal.
At this point, we are having to make multiple meals to find something he will eat. Last night, DN made Dixie Chili for dinner- one of Little Bug's favorites. He wouldn't eat it. So, I made him a PB&J- nope, not that either. He asked for cereal, but wouldn't eat that. I tried toast- no go. I tried banana- nope.
He ended up eating corn. That's it. That was his dinner. As a parent, I worry for him. We need to take him to the doctor's just to make sure that he doesn't need more vitamins or supplements. While I don't want to force him to eat, I also don't want him to have an iron deficiency or something else.
If anyone has suggests or tips, please let us know. His OT told us that he needs to try a new food at every meal. S***- at this point, I would like to amend it to Little Bug will eat *something* at every meal.
Tuesday, November 11, 2008
To Grandmother's House We Go
This weekend we went to Grandma’s house. This idea was met with much excitement by Little Bug- all week he had been looking at their picture and signing GRANDMA and GRANDPA. So off we went, with laundry and Frank in tow.
Little Bug had a great time with them. He really loves how rough Grandpa is when they play together- more of that good ol’ proprioceptive input. He also loves Grandma’s cooking and her laughter. He becomes such a comedian when he is there- doing everything in his power to make them laugh. I mentioned Grandma’s cooking, but really there is something magical about it. Little Bug eats and eats and eats at their house. It is unbelievable because normally he fights eating and is pretty rigid about it. But not at their house- Grandparents have magical abilities as they manage to get grandkids to do things that mere mortals- e.g. parents- can *never* get them to do.
Another highlight of the weekend was puddle jumping. Being that we live in the Pacific Northwest, there are plenty of opportunities for it. Ever since we first did that about a year ago, walking in the rain with him is tricky because he doesn’t get that there is a time and place for jumping in the puddles and on your way to school, work, or the doctor’s office isn’t one of them. We had a blast doing it! We found one puddle that went up to my knee- which meant it was at his waist- and just went nuts! DN being the part feline person who *hates* rain watched and laughed on the sidelines. I will have to get the picture of me and Little Bug that Grandpa took when we got home, because we were just soaked. I think about these things and hope that these are the memories that he will cherish later.
Unfortunately, Little Bug got horribly sick on Sunday night. He woke up at 1:00 AM vomiting. He proceeded to vomit every 15 minutes afterward and then he developed diarrhea. I felt so bad for him because he has a really hard time vomiting as he doesn’t quite get how to motor it out of his mouth. We went through 5 diapers, 5 sleepers, and 2 baths before 3:00 AM. But, it seemed like someone flipped a switch at three and he went back to sleep.
He made some really good progress this weekend. He learned to say HALP (help) while signing HELP. He used to say “See, See” when signing it, but Saturday I taught him to say Help. He also began mimicking- something that he has been really delayed on. He and Grandma had a great time doing this.
Our darkest hour- see the vomiting episode above- ended up being our brightest hour for communication. He couldn’t tell us before that he was sick and might vomit, so it was like holding a ticking time bomb of the gastrointestinal persuasion in your arms. Sunday night, although he wouldn’t throw up in the trash can, he figured out that before he puked, if he signed HELP and pointed to it, we would know what he meant. This was huge because it was the first time we were able to know what his needs truly were and be there for them. For most of his life, we have just been guessing- educated guesses, but still guesses. I heart sign language.
We have a new sign- RUN. We also have a couple new words or “word approximations” as his therapists would call them- HALP, Uppee- Puppy, and La Lou- which is Little Buggish for I love You. That last one absolutely warms my heart. I am thinking about getting it tattooed somewhere so that I will always remember it.
There are times when I can’t help but wonder what parts of his every day cute little boy life we miss because of ASD. You know that part of life that doesn’t revolve around sensory issues, feeding challenges, vestibular input, and speech delays? I know, it sounds crazy, but it still exists. We try to every day make sure that Little Bug gets time to be Little Bug- tics and all. I know I have to remind myself not to worry so much and to sometimes just be. That one day without therapy isn’t the end of the world. Again, it’s a fine balance and I can’t say we achieve it always.
Little Bug had a great time with them. He really loves how rough Grandpa is when they play together- more of that good ol’ proprioceptive input. He also loves Grandma’s cooking and her laughter. He becomes such a comedian when he is there- doing everything in his power to make them laugh. I mentioned Grandma’s cooking, but really there is something magical about it. Little Bug eats and eats and eats at their house. It is unbelievable because normally he fights eating and is pretty rigid about it. But not at their house- Grandparents have magical abilities as they manage to get grandkids to do things that mere mortals- e.g. parents- can *never* get them to do.
Another highlight of the weekend was puddle jumping. Being that we live in the Pacific Northwest, there are plenty of opportunities for it. Ever since we first did that about a year ago, walking in the rain with him is tricky because he doesn’t get that there is a time and place for jumping in the puddles and on your way to school, work, or the doctor’s office isn’t one of them. We had a blast doing it! We found one puddle that went up to my knee- which meant it was at his waist- and just went nuts! DN being the part feline person who *hates* rain watched and laughed on the sidelines. I will have to get the picture of me and Little Bug that Grandpa took when we got home, because we were just soaked. I think about these things and hope that these are the memories that he will cherish later.
Unfortunately, Little Bug got horribly sick on Sunday night. He woke up at 1:00 AM vomiting. He proceeded to vomit every 15 minutes afterward and then he developed diarrhea. I felt so bad for him because he has a really hard time vomiting as he doesn’t quite get how to motor it out of his mouth. We went through 5 diapers, 5 sleepers, and 2 baths before 3:00 AM. But, it seemed like someone flipped a switch at three and he went back to sleep.
He made some really good progress this weekend. He learned to say HALP (help) while signing HELP. He used to say “See, See” when signing it, but Saturday I taught him to say Help. He also began mimicking- something that he has been really delayed on. He and Grandma had a great time doing this.
Our darkest hour- see the vomiting episode above- ended up being our brightest hour for communication. He couldn’t tell us before that he was sick and might vomit, so it was like holding a ticking time bomb of the gastrointestinal persuasion in your arms. Sunday night, although he wouldn’t throw up in the trash can, he figured out that before he puked, if he signed HELP and pointed to it, we would know what he meant. This was huge because it was the first time we were able to know what his needs truly were and be there for them. For most of his life, we have just been guessing- educated guesses, but still guesses. I heart sign language.
We have a new sign- RUN. We also have a couple new words or “word approximations” as his therapists would call them- HALP, Uppee- Puppy, and La Lou- which is Little Buggish for I love You. That last one absolutely warms my heart. I am thinking about getting it tattooed somewhere so that I will always remember it.
There are times when I can’t help but wonder what parts of his every day cute little boy life we miss because of ASD. You know that part of life that doesn’t revolve around sensory issues, feeding challenges, vestibular input, and speech delays? I know, it sounds crazy, but it still exists. We try to every day make sure that Little Bug gets time to be Little Bug- tics and all. I know I have to remind myself not to worry so much and to sometimes just be. That one day without therapy isn’t the end of the world. Again, it’s a fine balance and I can’t say we achieve it always.
Saturday, November 8, 2008
Pop go the Weasels?
I recently stumbled across and article on MSN that was entitled The 10 WORST DADS. I don't knwo why I looked, but I did. And the third worst dad of last year was Thomas Beatie. He is a transgendered gentleman from Oregon who had a baby last year. Apparently, that makes him a bad dad because "Teaching kids about sex is tough enough. But when this bearded, deep-voiced transgendered Oregon man popped out a bundle of joy earlier this year, our jobs as fathers became even more complicated: "Sit down, son. I need to talk to you about the birds, the bees…and the trannies." Oof."
That's funny, as I would think that teaching your child to love and accept people- unconditionally- would make you a good parent. Maybe I am biased as after all, I am one of those dubious trannies who had a baby too. I was on hormones for almost two years when my partner and I wanted to adopt. We were told that we couldn't adopt because being transexual is considered a mental illness- much like being homosexual was. So, we decided that we wanted a child anyway and I began the process of weening myself of of Testosterone. Eventually, Little Bug was conceived and born.
Our friends were so supportive about it- they made Nick a shirt that said- HE'S having my baby. Which ofcourse Nick proudly wore everywhere. The funny thing about this situation is that Little Bug has not had any difficulty. When people call me she or mom- he corrrects them by yelling "DA!!!!!" or signing it over and over again.
My son may have a harder time in school- he may get made fun of. Hell, he may even hate us for doing this. But, hopefully, we will have raised him right. He will know that people should be able to get married no matter who they love. That HE and SHE are simply words and what matters is a person's actions and what is in their heart. That no matter the color of your skin, who you do or do not worship, and who you have sex with, you desesrve an equal place in this world. When my job's done, he'll know.
That's funny, as I would think that teaching your child to love and accept people- unconditionally- would make you a good parent. Maybe I am biased as after all, I am one of those dubious trannies who had a baby too. I was on hormones for almost two years when my partner and I wanted to adopt. We were told that we couldn't adopt because being transexual is considered a mental illness- much like being homosexual was. So, we decided that we wanted a child anyway and I began the process of weening myself of of Testosterone. Eventually, Little Bug was conceived and born.
Our friends were so supportive about it- they made Nick a shirt that said- HE'S having my baby. Which ofcourse Nick proudly wore everywhere. The funny thing about this situation is that Little Bug has not had any difficulty. When people call me she or mom- he corrrects them by yelling "DA!!!!!" or signing it over and over again.
My son may have a harder time in school- he may get made fun of. Hell, he may even hate us for doing this. But, hopefully, we will have raised him right. He will know that people should be able to get married no matter who they love. That HE and SHE are simply words and what matters is a person's actions and what is in their heart. That no matter the color of your skin, who you do or do not worship, and who you have sex with, you desesrve an equal place in this world. When my job's done, he'll know.
Friday, November 7, 2008
Insurance in California
The link below goes to a story about Feda- a mother of a child who is severely affected by Autism- who has taken on Kaiser through an Independent Medical Review and was granted her requested treatments.
Please read the article and watch the videos. It seems that the crux of the question as to whether an insurance company covers items such as ABA therapy, speech pathology or occupational therapy is whether those services are deemed as "educational" or "medical".
http://abclocal.go.com/kgo/story?section=news/health&id=6493262
Please read the article and watch the videos. It seems that the crux of the question as to whether an insurance company covers items such as ABA therapy, speech pathology or occupational therapy is whether those services are deemed as "educational" or "medical".
http://abclocal.go.com/kgo/story?section=news/health&id=6493262
Silence doesn't equal stupidity
I have to say that one of things we struggle with the most is the way people react to Little Bug when they see that he uses sign language and that he can't speak. One of two things usually happen- they talk about him as though he is a piece of furniture or they begin to speak incredibly loud and slowly as though because the words aren't coming out, they aren't going in. The most interesting thing about this, is that this is what our wizard of an ASD specialist recommended. He suggested that because Little Bug has a severe delay in both receptive and expressive speech, we should talk slower to him to help him. Funny enough, all we had to do was talk with our hands, and the words followed. It had nothing to do with the speed of the communication, but the manner in which the communication was occurring.
Please remember that your ability or inability to speak doesn't measure your intelligence or ability to communicate. Trust me on this- I have met plenty of people who can use 45+ words to string a sentence together and yet the couldn't find their own asses with both hands and a flashlight. Conversely, I have met many people- Little Bug included- who are mostly non verbal and yet have an amazing amount of intelligence and problem solving. That they can't speak isn't important- we just need to find a way to connect.
ABC has had a special on everyday regarding Autism. One of the items I found most interesting were the items that included non verbal people with autism who were deemed dumb or unreachable by the establishment until given a computer. Suddenly, they had a voice. This reminds me that as caregivers, family members, friends, and members of a community, we must always reach out and be willing to reach out in unconventional ways to reach our fellow man.
Just remember, that the next time you see someone who can't speak- due to a hearing impairment, ASD, cataplexy, or a myriad of other conditions- don't assume that they can't hear you and can't understand what you are saying. You would be surprised by how much they hear and understand.
Please remember that your ability or inability to speak doesn't measure your intelligence or ability to communicate. Trust me on this- I have met plenty of people who can use 45+ words to string a sentence together and yet the couldn't find their own asses with both hands and a flashlight. Conversely, I have met many people- Little Bug included- who are mostly non verbal and yet have an amazing amount of intelligence and problem solving. That they can't speak isn't important- we just need to find a way to connect.
ABC has had a special on everyday regarding Autism. One of the items I found most interesting were the items that included non verbal people with autism who were deemed dumb or unreachable by the establishment until given a computer. Suddenly, they had a voice. This reminds me that as caregivers, family members, friends, and members of a community, we must always reach out and be willing to reach out in unconventional ways to reach our fellow man.
Just remember, that the next time you see someone who can't speak- due to a hearing impairment, ASD, cataplexy, or a myriad of other conditions- don't assume that they can't hear you and can't understand what you are saying. You would be surprised by how much they hear and understand.
Thursday, November 6, 2008
Just Sleep
Little Bug's quality of sleep has sucked more so than usual recently. The way I explain it to people is that, as far as sleeping through the night goes, we still have a baby- a very big and mobile baby, but a baby none the less. He wants to be cuddled and soothed and rocked. He wants to be close to you so he can twirl your hair. He wakes up crying. It is exhausting.
I wish there was something we could do. We are trying the weighted blanket, and while it helps him sleep deeper when he uses it, he often takes it off. It seems like he can only tolerate it for a couple hours at a time and then wants it off. He is still sleep talking and crawling. Not quite sure what to do about that- I guess, there really isn't a whole lot we can do.
We heard from his OT yesterday. She had faxed his treatment plan to our pediatrician's office twice, but didn't receive a response. When I called his office, we were told they didn't get anything and that he goes on vacation for two weeks as of Friday. So DN and Little Bug are going to to pick it up and take it to his office.
Hopefully, once we get that rolling, we can address his sleep issues. We are really reluctant to do any medicinal interventions, so we are hoping that we can help him in other ways. Till then, we will continue to be zombies- formerly known as his parents.
I wish there was something we could do. We are trying the weighted blanket, and while it helps him sleep deeper when he uses it, he often takes it off. It seems like he can only tolerate it for a couple hours at a time and then wants it off. He is still sleep talking and crawling. Not quite sure what to do about that- I guess, there really isn't a whole lot we can do.
We heard from his OT yesterday. She had faxed his treatment plan to our pediatrician's office twice, but didn't receive a response. When I called his office, we were told they didn't get anything and that he goes on vacation for two weeks as of Friday. So DN and Little Bug are going to to pick it up and take it to his office.
Hopefully, once we get that rolling, we can address his sleep issues. We are really reluctant to do any medicinal interventions, so we are hoping that we can help him in other ways. Till then, we will continue to be zombies- formerly known as his parents.
Wednesday, November 5, 2008
Ee Ee Yumpy Shark!
Little Bug said his first sentence last night since his regression in both sign and speech. His last sentence was at 11 months- I DID IT! He has lost a lot of language since then- he tested at 9 months of development for both receptive and expressive speech. But, he has made a ton of progress.
One thing that has helped his progress is his obsessions. Although he doesn't have a lot of language, he talks about them constantly. The first thing out of his mouth in the morning and the last thing before he goes to sleep is SHARKS! He also loves fish and trains. They work for us as we can make them incentives. So much so that we have thought of making him a shirt that says- WILL WORK FOR FISH. Last night, we were watching a Discovery Channel special about the sharks off of South Africa that jump during predations against fur seals. The shark got the seal and Little Bug yelled- Ee ee Yummpy Shark!!!!! Which, when translated, means Eat, eat jumping shark! He signed while saying it.
Another development we had yesterday was colors. We know he knows his colors- he can match them, etc. but getting him to name them or point to a specific color has never happened due to his language delay. He was 4 for 5 last night on matching! He also demonstrated quite a few new signs:
Red
Green
Orange
Walk
Shark
New Words:
Yump- Jump
Ru- Red
One thing that has helped his progress is his obsessions. Although he doesn't have a lot of language, he talks about them constantly. The first thing out of his mouth in the morning and the last thing before he goes to sleep is SHARKS! He also loves fish and trains. They work for us as we can make them incentives. So much so that we have thought of making him a shirt that says- WILL WORK FOR FISH. Last night, we were watching a Discovery Channel special about the sharks off of South Africa that jump during predations against fur seals. The shark got the seal and Little Bug yelled- Ee ee Yummpy Shark!!!!! Which, when translated, means Eat, eat jumping shark! He signed while saying it.
Another development we had yesterday was colors. We know he knows his colors- he can match them, etc. but getting him to name them or point to a specific color has never happened due to his language delay. He was 4 for 5 last night on matching! He also demonstrated quite a few new signs:
Red
Green
Orange
Walk
Shark
New Words:
Yump- Jump
Ru- Red
Yes We Can
Hello, Chicago.
If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer.
It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference.
It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.
We are, and always will be, the United States of America.
It's the answer that led those who've been told for so long by so many to be cynical and fearful and doubtful about what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.
It's been a long time coming, but tonight, because of what we did on this date in this election at this defining moment change has come to America.
A little bit earlier this evening, I received an extraordinarily gracious call from Sen. McCain.
Sen. McCain fought long and hard in this campaign. And he's fought even longer and harder for the country that he loves. He has endured sacrifices for America that most of us cannot begin to imagine. We are better off for the service rendered by this brave and selfless leader.
I congratulate him; I congratulate Gov. Palin for all that they've achieved. And I look forward to working with them to renew this nation's promise in the months ahead.
I want to thank my partner in this journey, a man who campaigned from his heart, and spoke for the men and women he grew up with on the streets of Scranton and rode with on the train home to Delaware, the vice president-elect of the United States, Joe Biden.
And I would not be standing here tonight without the unyielding support of my best friend for the last 16 years the rock of our family, the love of my life, the nation's next first lady Michelle Obama.
Sasha and Malia I love you both more than you can imagine. And you have earned the new puppy that's coming with us to the new White House.
And while she's no longer with us, I know my grandmother's watching, along with the family that made me who I am. I miss them tonight. I know that my debt to them is beyond measure.
To my sister Maya, my sister Alma, all my other brothers and sisters, thank you so much for all the support that you've given me. I am grateful to them.
And to my campaign manager, David Plouffe, the unsung hero of this campaign, who built the best -- the best political campaign, I think, in the history of the United States of America.
To my chief strategist David Axelrod who's been a partner with me every step of the way.
To the best campaign team ever assembled in the history of politics you made this happen, and I am forever grateful for what you've sacrificed to get it done.
But above all, I will never forget who this victory truly belongs to. It belongs to you. It belongs to you.
I was never the likeliest candidate for this office. We didn't start with much money or many endorsements. Our campaign was not hatched in the halls of Washington. It began in the backyards of Des Moines and the living rooms of Concord and the front porches of Charleston. It was built by working men and women who dug into what little savings they had to give $5 and $10 and $20 to the cause.
It grew strength from the young people who rejected the myth of their generation's apathy who left their homes and their families for jobs that offered little pay and less sleep.
It drew strength from the not-so-young people who braved the bitter cold and scorching heat to knock on doors of perfect strangers, and from the millions of Americans who volunteered and organized and proved that more than two centuries later a government of the people, by the people, and for the people has not perished from the Earth.
This is your victory.
And I know you didn't do this just to win an election. And I know you didn't do it for me.
You did it because you understand the enormity of the task that lies ahead. For even as we celebrate tonight, we know the challenges that tomorrow will bring are the greatest of our lifetime -- two wars, a planet in peril, the worst financial crisis in a century.
Even as we stand here tonight, we know there are brave Americans waking up in the deserts of Iraq and the mountains of Afghanistan to risk their lives for us.
There are mothers and fathers who will lie awake after the children fall asleep and wonder how they'll make the mortgage or pay their doctors' bills or save enough for their child's college education.
There's new energy to harness, new jobs to be created, new schools to build, and threats to meet, alliances to repair.
The road ahead will be long. Our climb will be steep. We may not get there in one year or even in one term. But, America, I have never been more hopeful than I am tonight that we will get there.
I promise you, we as a people will get there.
There will be setbacks and false starts. There are many who won't agree with every decision or policy I make as president. And we know the government can't solve every problem.
But I will always be honest with you about the challenges we face. I will listen to you, especially when we disagree. And, above all, I will ask you to join in the work of remaking this nation, the only way it's been done in America for 221 years -- block by block, brick by brick, calloused hand by calloused hand.
What began 21 months ago in the depths of winter cannot end on this autumn night.
This victory alone is not the change we seek. It is only the chance for us to make that change. And that cannot happen if we go back to the way things were.
It can't happen without you, without a new spirit of service, a new spirit of sacrifice.
So let us summon a new spirit of patriotism, of responsibility, where each of us resolves to pitch in and work harder and look after not only ourselves but each other.
Let us remember that, if this financial crisis taught us anything, it's that we cannot have a thriving Wall Street while Main Street suffers.
In this country, we rise or fall as one nation, as one people. Let's resist the temptation to fall back on the same partisanship and pettiness and immaturity that has poisoned our politics for so long.
Let's remember that it was a man from this state who first carried the banner of the Republican Party to the White House, a party founded on the values of self-reliance and individual liberty and national unity.
Those are values that we all share. And while the Democratic Party has won a great victory tonight, we do so with a measure of humility and determination to heal the divides that have held back our progress.
As Lincoln said to a nation far more divided than ours, we are not enemies but friends. Though passion may have strained, it must not break our bonds of affection.
And to those Americans whose support I have yet to earn, I may not have won your vote tonight, but I hear your voices. I need your help. And I will be your president, too.
And to all those watching tonight from beyond our shores, from parliaments and palaces, to those who are huddled around radios in the forgotten corners of the world, our stories are singular, but our destiny is shared, and a new dawn of American leadership is at hand.
To those -- to those who would tear the world down: We will defeat you. To those who seek peace and security: We support you. And to all those who have wondered if America's beacon still burns as bright: Tonight we proved once more that the true strength of our nation comes not from the might of our arms or the scale of our wealth, but from the enduring power of our ideals: democracy, liberty, opportunity and unyielding hope.
That's the true genius of America: that America can change. Our union can be perfected. What we've already achieved gives us hope for what we can and must achieve tomorrow.
This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight's about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing: Ann Nixon Cooper is 106 years old.
She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons -- because she was a woman and because of the color of her skin.
And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.
At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.
When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs, a new sense of common purpose. Yes we can.
When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.
She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.
A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination.
And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change.
Yes we can.
America, we have come so far. We have seen so much. But there is so much more to do. So tonight, let us ask ourselves -- if our children should live to see the next century; if my daughters should be so lucky to live as long as Ann Nixon Cooper, what change will they see? What progress will we have made?
This is our chance to answer that call. This is our moment.
This is our time, to put our people back to work and open doors of opportunity for our kids; to restore prosperity and promote the cause of peace; to reclaim the American dream and reaffirm that fundamental truth, that, out of many, we are one; that while we breathe, we hope. And where we are met with cynicism and doubts and those who tell us that we can't, we will respond with that timeless creed that sums up the spirit of a people: Yes, we can.
Thank you. God bless you. And may God bless the United States of America
Tuesday, November 4, 2008
Weekend Review
Halloween was interesting- it was like herding cats. I will have to post pictures. Little Bug had an okay time. He really liked the candy aspect of it. He readily signed CANDY PLEASE at every store. He did not like the costume aspect- he cried and cried and cried over his costume. Once he saw other kids in theirs, he became distracted, but was unhappy with it until that point. He also had a hard time with the process of trick or treating. We went to the Proctor District and you stand in a HUGE line as trick or treat. This meant that there was someone bumping him or touching him or getting to close and he would get upset. He did pretty well with handling it and only bit himself a few times.
He had therapy yesterday and it went okay. He is starting to exhibit the behaviors that he has at home at therapy. This is going to sound mean, but it is good to see for two reasons. One, this confirms my suspicion that we aren’t bad parents. Two, this allows us to address the issues, rather than simply reporting them and getting ideas. His aggression is getting worse- he bit me a couple of times, Frank got hurt, he bit himself, and hit his therapist in the face, so we are to begin ABC charts- antecedent, behavior, consequence- to see if we can’t nail down what the behavior means and give him a better way of expressing it.
This brings me to my last thought- the holidays. They are fast approaching. They make me nervous. I am concerned for Little Bug and how he will do with DN’s family. I am also concerned with how Little Bug’s cousins will fare as he gets aggressive during play. DN and I had some conversations around this and came up with a strategy. No more than 3 hours at DN’s parent’s house. There will be extra people- including kids there- and it will be stressful for everyone. We will leave when Little Bug is ready to leave if it is before the 3 hour mark. If he gets aggressive or is having a hard time, we will go. We are also going to bring special food for Little Bug as you never know what he will eat. It’s not that he passionately loves things and then one day hates them. It’s more that he is random about what he will eat and we have to make several dinners.
He had therapy yesterday and it went okay. He is starting to exhibit the behaviors that he has at home at therapy. This is going to sound mean, but it is good to see for two reasons. One, this confirms my suspicion that we aren’t bad parents. Two, this allows us to address the issues, rather than simply reporting them and getting ideas. His aggression is getting worse- he bit me a couple of times, Frank got hurt, he bit himself, and hit his therapist in the face, so we are to begin ABC charts- antecedent, behavior, consequence- to see if we can’t nail down what the behavior means and give him a better way of expressing it.
This brings me to my last thought- the holidays. They are fast approaching. They make me nervous. I am concerned for Little Bug and how he will do with DN’s family. I am also concerned with how Little Bug’s cousins will fare as he gets aggressive during play. DN and I had some conversations around this and came up with a strategy. No more than 3 hours at DN’s parent’s house. There will be extra people- including kids there- and it will be stressful for everyone. We will leave when Little Bug is ready to leave if it is before the 3 hour mark. If he gets aggressive or is having a hard time, we will go. We are also going to bring special food for Little Bug as you never know what he will eat. It’s not that he passionately loves things and then one day hates them. It’s more that he is random about what he will eat and we have to make several dinners.
“… a broken model of someone else’s perfection”
This was stated by Amanda Baggs as she reflected on ASD therapy as a person with Autism. Please watch this video- it is the first I have found that includes people with ASD and their families that don’t dismiss a person, but embrace diversity.
http://www.cbc.ca/national/blog/special_feature/positively_autistic/positively_autistic.html
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