We got great news yesterday. Apparently, it is fairly common for children who have lymphatic malformations to have lymph nodes that retain their swelling- sometimes up to a lifetime.
They feel pretty confident that is simply an enlarged lymph node that will always stay enlarged. They will re-examine it in two years to see if it has developed. They also gave us the warning signs of a lymphatic malformation. Its funny to have, as we didn't need them before because Little Bug was born that way.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Lump
We have the appointment today at Children's Hospital with Little Bug's surgeon to find out whether the lump on the back of his head is a lymphatic malformation.
Even though we have done this once, I can't help but feel sick with worry. Hopefully, this is useless and baselss and I will feel idiotic in 4 hours from being so worried.
Please hope that I am an idiot. The option that my spidey senses might be right is a far scarier option than being wrong.
Even though we have done this once, I can't help but feel sick with worry. Hopefully, this is useless and baselss and I will feel idiotic in 4 hours from being so worried.
Please hope that I am an idiot. The option that my spidey senses might be right is a far scarier option than being wrong.
Monday, April 27, 2009
Identity
Little Bug and I were walking down the sidewalk yesterday and he began to list whether people were boys or girls. This was surprising for many reasons. First, we haven't really worked with him on this. Second, because of who I am- a transgendered man who has had a baby and at times can look feminine- I *try* to not identify people by their gender.
As I listened to him, I held my breath. He pointed to me. This is it... this is the moment that I have been dreading. I was terrified of how he might identify me. I am even more scared of how my identity would affect him. He is so literal. He knows me only as daddy, but has realized that my body and his and Nick's are very different.
I, at times, have considered forgoing the choices I have made. My rationale was that it would make it easier on him to just undo the life I have made and fit into the mold. It won't. To me, that would only teach him that making the easy choice versus the right choice is what you should do; that rather than persevering and forging your path, it is easier to succumb. Trust me, I really tried to be a girl and really tried to fit in. It never worked and I hated my life.
Although I may have an odd life with few friends, the friends I have simply accept that I am who I am and make no bones about it. This can be a scary path to be on, but I will show Little Bug that doing what you believe is right is rewarding, even when just about everyone else can't understand why you do what you do. I will be his example of "OTHER". There will always be a person/place/idea, etc. that doesn't fit into the dichotomy to which our society so desperately clings. At least I can try to make this less painful for him.
He pointed at me and smiled. He signed Daddy. I asked him- am I a boy or a girl? He just smiled. I am happy to be DADDY above all other identities that I may have.
He doesn't do this grey things with anything else. He categorizes and divides. I imagine his head is full of Venn diagrams for everything- toys, foods, clothes. “GREY MUST BE ELIMINATED!” He categorizes everyone, save me and himself, correctly. I am just daddy and he insists that he is a girl. Maybe this is a phase or maybe this is how it will always be. I am happy to be an exception to his rules.
As I listened to him, I held my breath. He pointed to me. This is it... this is the moment that I have been dreading. I was terrified of how he might identify me. I am even more scared of how my identity would affect him. He is so literal. He knows me only as daddy, but has realized that my body and his and Nick's are very different.
I, at times, have considered forgoing the choices I have made. My rationale was that it would make it easier on him to just undo the life I have made and fit into the mold. It won't. To me, that would only teach him that making the easy choice versus the right choice is what you should do; that rather than persevering and forging your path, it is easier to succumb. Trust me, I really tried to be a girl and really tried to fit in. It never worked and I hated my life.
Although I may have an odd life with few friends, the friends I have simply accept that I am who I am and make no bones about it. This can be a scary path to be on, but I will show Little Bug that doing what you believe is right is rewarding, even when just about everyone else can't understand why you do what you do. I will be his example of "OTHER". There will always be a person/place/idea, etc. that doesn't fit into the dichotomy to which our society so desperately clings. At least I can try to make this less painful for him.
He pointed at me and smiled. He signed Daddy. I asked him- am I a boy or a girl? He just smiled. I am happy to be DADDY above all other identities that I may have.
He doesn't do this grey things with anything else. He categorizes and divides. I imagine his head is full of Venn diagrams for everything- toys, foods, clothes. “GREY MUST BE ELIMINATED!” He categorizes everyone, save me and himself, correctly. I am just daddy and he insists that he is a girl. Maybe this is a phase or maybe this is how it will always be. I am happy to be an exception to his rules.
Thursday, April 23, 2009
Our first inside joke
Anyone been watched Milo and Otis recently? This is one of Little Bug's new favorite movies. His favorite part is when Milo and Otis are watching Gloria's egg. He loves how the frog teases Otis. He also loves that when the egg hatches, the chick thinks its a dog.
Recently, Little Bug will start randomly saying, "OTIS... OTIS... OTIS... OTIS" just like the frog. He looks at us and raises one eyebrow. When we reply with the same thing, he giggles hysterically.
He has now added, "Mommy! Mommy! Mommy! Mommy!.... CHICKEN MOMMY!" This is from when Otis finally convinces the chick that it is really a chicken and not a dog. He thinks it is hysterical that we know the movie like he does.
Although this is a simple thing that most parents would never remember, I will treasure this forever. When he first saw the movie, he was somewhat outraged that the chicken thought it was a dog. He would yell NO over and over at the TV. The fact that he now gets that calling something it isn't is funny is huge. The fact that he wants to share his sense of humor with us, even more important.
Recently, Little Bug will start randomly saying, "OTIS... OTIS... OTIS... OTIS" just like the frog. He looks at us and raises one eyebrow. When we reply with the same thing, he giggles hysterically.
He has now added, "Mommy! Mommy! Mommy! Mommy!.... CHICKEN MOMMY!" This is from when Otis finally convinces the chick that it is really a chicken and not a dog. He thinks it is hysterical that we know the movie like he does.
Although this is a simple thing that most parents would never remember, I will treasure this forever. When he first saw the movie, he was somewhat outraged that the chicken thought it was a dog. He would yell NO over and over at the TV. The fact that he now gets that calling something it isn't is funny is huge. The fact that he wants to share his sense of humor with us, even more important.
Tuesday, April 21, 2009
OT update
We received good news from Little Bug's OT. She feels that because of the home system set up, we should reduce Little Bug's sessions to twice a month for trouble shooting. She said, "You guys are capapble to see the suggestions once and implement them consistently in your home environment."
This was kind of a proud moment in two ways. First, we were excited for Little Bug because she said that he has made some good progress and has consistently been moving towards a more regulated being.
Secondly, is from a personal perspective for me and Nick, it is nice to have a therapist feel that we are competent. I know that sounds silly, but one area that we often struggle with is feeling inadequate. As a parent of any child, there is always times when you feel like we should be doing something better or we should know how to do something.
This was kind of a proud moment in two ways. First, we were excited for Little Bug because she said that he has made some good progress and has consistently been moving towards a more regulated being.
Secondly, is from a personal perspective for me and Nick, it is nice to have a therapist feel that we are competent. I know that sounds silly, but one area that we often struggle with is feeling inadequate. As a parent of any child, there is always times when you feel like we should be doing something better or we should know how to do something.
Friday, April 17, 2009
Recovery?
The Today Show has been running a series of videos about ASD. Here is a link to the videos:
http://today.msnbc.msn.com/id/26184891/vp/30262936#30254929
There are four in the series-
Can Robots help treat autism?
Making sense of children’s senses
Web Only: A school for kids with Autism
Can kids recover from Autism?
While I watched all of them, I was struck by the fourth- the question of recovery. This is a double edged sword for me. While I desperately want for Little Bug to have every opportunity that any else child has, I am frightened by the idea of recovery.
I don’t believe that you ever truly cover from ASD. From a personal experience with my Uncle, I can say that while the symptoms decrease to a great extent, they don’t disappear. They are simply managed- more or less. Uncle wasn’t diagnosed with ASD until adulthood. He was born in a time when children who didn’t fit into the mold were hidden away. Stories from my grandma show that their mother didn’t do this. She fought tooth and nail to afford him the greatest opportunities.
Still there are symptoms. He is extremely grounded in a routine and very literal. He at times can appear to be inflexible to change- to a greater extent than people who aren’t on the spectrum. He has an obsessive knowledge and love of music- not playing, but knowledge. He can tell you who played what with whom and when. It is as though he has a music history Wikipedia in his brain. Uncle is very hesitant to socialize with new people, but once you get him going, it’s a blast. I love Uncle dearly and glad to have him in my life. He is a kind and funny person and I love spending time with him. Our experience with Little Bug has brought us closer to Uncle and afforded Uncle a new opportunity to learn about ASD in a personal way.
The other side of this concern for me is that by taking away a diagnosis while managing the symptoms of ASD can lead to pitfalls. A lack of understanding of about behaviors that may not be managed. A potential loss of services. While the behaviors may be managed, they are there and some people as adults may need therapy to better manage the behaviors. An ASD diagnosis affords for opportunities for assistance and rites. Someone who isn’t diagnosed may lose the option of aid and services for a disability that they still struggle with.
I don’t want to sound crazy. I desperately wish that Little Bug wasn’t diagnosed at times. Other times, I can accept it. I fear for him losing his diagnosis because I fear that he may opportunities for services that he may need.
I guess it all depends on the level of “recovery” and whether you believe that it can happen. While I can believe it can happen, I am not sure how completely or how often. Little Bug has made great strides and about 50% of the time, most people who spend a short amount of time with him wouldn’t know he has ASD. The other 50%, well let’s just say it is more obvious.
http://today.msnbc.msn.com/id/26184891/vp/30262936#30254929
There are four in the series-
Can Robots help treat autism?
Making sense of children’s senses
Web Only: A school for kids with Autism
Can kids recover from Autism?
While I watched all of them, I was struck by the fourth- the question of recovery. This is a double edged sword for me. While I desperately want for Little Bug to have every opportunity that any else child has, I am frightened by the idea of recovery.
I don’t believe that you ever truly cover from ASD. From a personal experience with my Uncle, I can say that while the symptoms decrease to a great extent, they don’t disappear. They are simply managed- more or less. Uncle wasn’t diagnosed with ASD until adulthood. He was born in a time when children who didn’t fit into the mold were hidden away. Stories from my grandma show that their mother didn’t do this. She fought tooth and nail to afford him the greatest opportunities.
Still there are symptoms. He is extremely grounded in a routine and very literal. He at times can appear to be inflexible to change- to a greater extent than people who aren’t on the spectrum. He has an obsessive knowledge and love of music- not playing, but knowledge. He can tell you who played what with whom and when. It is as though he has a music history Wikipedia in his brain. Uncle is very hesitant to socialize with new people, but once you get him going, it’s a blast. I love Uncle dearly and glad to have him in my life. He is a kind and funny person and I love spending time with him. Our experience with Little Bug has brought us closer to Uncle and afforded Uncle a new opportunity to learn about ASD in a personal way.
The other side of this concern for me is that by taking away a diagnosis while managing the symptoms of ASD can lead to pitfalls. A lack of understanding of about behaviors that may not be managed. A potential loss of services. While the behaviors may be managed, they are there and some people as adults may need therapy to better manage the behaviors. An ASD diagnosis affords for opportunities for assistance and rites. Someone who isn’t diagnosed may lose the option of aid and services for a disability that they still struggle with.
I don’t want to sound crazy. I desperately wish that Little Bug wasn’t diagnosed at times. Other times, I can accept it. I fear for him losing his diagnosis because I fear that he may opportunities for services that he may need.
I guess it all depends on the level of “recovery” and whether you believe that it can happen. While I can believe it can happen, I am not sure how completely or how often. Little Bug has made great strides and about 50% of the time, most people who spend a short amount of time with him wouldn’t know he has ASD. The other 50%, well let’s just say it is more obvious.
Thursday, April 16, 2009
A Tale of Two Tails
We moved this past weekend. For the most part, Little Bug did amazingly well. He was pretty happy to move- who wouldn't want to when they have a sharkified room? Occasionally, he would be upset and have meltdowns, but they were rather short lived. Actually, I think our dog Frank had more anxiety about it than Little Bug ever did.
I think the main reason that Little Bug adapted well was because of Grandma and Grandpa. They are always a special treat to him and he was pretty excited to have Grandma all to himself while Nick, Grandpa, and I moved.
He had an interesting conversation with Grandma that I had to share. As you may guess, Frank is a boy dog. Well, according to Little Bug, that means he has two tails. He explained to Grandma this and she corrected him telling him that it was a pee-pee. Nope! Little Bug pointed at Frank's penis and said, "One Tail!". He then pointed at the dog's actual tail and counted, "Two Tails!".
Grandma about exploded from trying so hard not to laugh. Little Bug takes these matters seriously and you don't dare laugh.
I think the main reason that Little Bug adapted well was because of Grandma and Grandpa. They are always a special treat to him and he was pretty excited to have Grandma all to himself while Nick, Grandpa, and I moved.
He had an interesting conversation with Grandma that I had to share. As you may guess, Frank is a boy dog. Well, according to Little Bug, that means he has two tails. He explained to Grandma this and she corrected him telling him that it was a pee-pee. Nope! Little Bug pointed at Frank's penis and said, "One Tail!". He then pointed at the dog's actual tail and counted, "Two Tails!".
Grandma about exploded from trying so hard not to laugh. Little Bug takes these matters seriously and you don't dare laugh.
Tuesday, April 7, 2009
Just call him Capt. Literal
Little Bug has always been very literal. Now that he is truly understanding language, it is interesting to see how he understands/perceives things. For example, I told him to put his sippy cup in the kitchen- meaning pick it up off the floor, take it into the kitchen and put it away- sink or counter, doesn't matter.
He picked up his cup and hurried off and I thought- what a good boy! I walked into the kitchen about 20 minutes later to find said sippy cup in the middle of the kitchen floor. I didn't tell him where to put it in the kitchen, just to put it in the kitchen.
Earlier this week, I told him to get into the bathtub. He looked at me and then kinda shrugged and walked away. I walked behind him and realized that he got into the bathtub- clothes and all.
While I believe that he knows that you take your clothes off to take a bath or that sippy cups go on the counter, I also believe that when we give him instructions that leave out steps, he follows them to the letter. Not to be difficult- like I used to do- but because he truly thinks that we literally mean get into the tub exactly as you are or place your sippy cup in the kitchen.
I have a feeling this will be one of the most frustrating things for everyone involved.
He picked up his cup and hurried off and I thought- what a good boy! I walked into the kitchen about 20 minutes later to find said sippy cup in the middle of the kitchen floor. I didn't tell him where to put it in the kitchen, just to put it in the kitchen.
Earlier this week, I told him to get into the bathtub. He looked at me and then kinda shrugged and walked away. I walked behind him and realized that he got into the bathtub- clothes and all.
While I believe that he knows that you take your clothes off to take a bath or that sippy cups go on the counter, I also believe that when we give him instructions that leave out steps, he follows them to the letter. Not to be difficult- like I used to do- but because he truly thinks that we literally mean get into the tub exactly as you are or place your sippy cup in the kitchen.
I have a feeling this will be one of the most frustrating things for everyone involved.
Saturday, April 4, 2009
Clouds
Yesterday Little Bug and I were sitting in the back seat together on the way home from the bus. He looked out the window and said, "White... Sun." Not understanding because the sun was on the opposite side of the car from where he was looking, I checked it out.
There were the most beautiful, puffy white clouds in the sky. I looked at him and signed CLOUDS. I gave him a second to let the sign sink in and then told him, "CLOUDS."
"Cluh- oowws- ds." He tried on the word, seeing how it fit. Apparently, not well. "No. NO! WHITE NO! UP HIGH!"
He called the clouds snow that was up high. He looked at me to see if he was right and all I could do is smile.
From this day forward, clouds in our house shalll be known as white snow up high.
There were the most beautiful, puffy white clouds in the sky. I looked at him and signed CLOUDS. I gave him a second to let the sign sink in and then told him, "CLOUDS."
"Cluh- oowws- ds." He tried on the word, seeing how it fit. Apparently, not well. "No. NO! WHITE NO! UP HIGH!"
He called the clouds snow that was up high. He looked at me to see if he was right and all I could do is smile.
From this day forward, clouds in our house shalll be known as white snow up high.
Thursday, April 2, 2009
World Autism Awareness Day
Because of Little Bug, Uncle, J-Man, and thousands of other children I am aware. Because of the tireless efforts of their parents and families, I am aware. Because of the dedication, determination, and selflessness of Little Bug's teachers, I am aware.
I am aware that while this is a lifelong experience, it is not a death sentence nor an imprisonment. It is a life- someone to be cherished, celebrated, and enjoyed. Like any life, there are ups and downs, struggles and sorrow. There always is. But there is also always joy. I am aware that my son is equal to everyone else's and deserves an equal place and voice in this world. I am aware that my son is perfect just as he is- stimming, smiling, sharkey, hysterical.
I am aware that the rhetoric of newspapers, magazines, "celebrities", and doomsday organizations is meant to scare you. I am aware that there are a myriad of choices facing families with ASD. I am aware that we have the right to forge our own paths. I am aware that your choices deserve my respect. I am aware that we are in this together.
I am aware.
Are you?
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