Yesterday was like any other day. Any other day in which your child can't distinguish food items from non food items at 2 years and 362 days of age. In the past month alone, he has eaten, attempted to eat, or mouthed the following items:
Velcro*
Playdough*
Raw beans*
The plastic ring from a milk jug
The faucet on the bathtub
Paper clip
Rubber band
Matchbox car wheels*
House Keys
Yarn*
Sticks
Rocks*
Sand*
The kitchen Table
The living room table
The coffee table
Baby wipes*
Soap*
(the items with astericks next to them were successfully consumed.)
Yesterday far exceeded all previous performances. We were in the yard playing with our neighbor's daughter. In the time it took me to turn around to say hello to our neightbor, Little Bug found a piece of glass that was 2 inches long and BEGAN TO EAT IT!
I rushed over to him, which means that he tried to swallow it as that is what he does, and tackled him to the ground and forced his mouth open in order to get the glass out. My poor neighbor is standing there as I force Little Bug to keep his mouth open so that I can see if there are any shatters of glass. (There weren't, just several cuts along the sides of his mouth.)
She looked at me and shook her head. "But that was glass! He didn't cry? Can't he feel it?"
I tried to explain that we don't know. Her response was to look at Little Bug and say, " You will be the best side show performer ever!"
We are lost and don't know what to do about this. While I understand that *nothing* happened, what could have happened plagues me. Please, if you have any ideas, send them our way.
Thursday, July 23, 2009
Wednesday, July 22, 2009
Book Review
I have gotten back into the swing of ASD research and wanted to share some of my experiences.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
The first book is "Daniel Isn't Talking" by Marti Leimbach. It is a fictional account of one mother's trip down diagnosis lane. I found this book to be comforting. It speaks honestly to the fears, worries, and greif that I went through. The difficulty that the main character- Melanie- had pre-diagnosis, the waiting for something to go wrong, knowing something was wrong but not really "knowing" it, was familiar.
The second book is called "Autism Life Skills" by Chantal Sicile Kira. I found this book to be informative as it provided a nice insight into the what people *on* the spectrum want. So often we speak for our children and write the books ourselves. We speak from our experiences and view point. While most of the items on this list are common sense, the perspective provided and the why's and how's were interesting.
I did find it a bit overwhelming emotionally. Reviewing items such as abuse prevention, living situations, and employment are difficult to digest. This will be a book that I keep on my shelf and refer back to.
Recently, I have found myself back at that point where the ASD diagnosis is painful. Most days, it is okay, however like any grief cycle- which most of us go through- you come full circle and find yourself experiencing the same difficutlies. As a person who has lost three parents, I can tell you that it doesn't go away per se, it just gets easier. The times when it hurts gets further and further apart.
Right now, it is raw again. Maybe because of it is the anniversary or because of the books of nerves from taking the training wheels off. Regardless, I have found that trying to look at the long term- like the material above- is overwhelming.
Tuesday, July 21, 2009
No more training wheels
This is Little Bug's last week at Birth to Three. Nick and I are a bit panicked. For us, this means that we no longer have a team of 5 highly educated, informed, and dedicated people supporting us through this.
This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.
Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.
They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.
I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.
This journey has been amazing. Everyone wants to give Nick and I all the credit- "Your follow through at home is amazing!" or "You two must work really hard with him!"- forgetting that we couldn't do this without our team.
Our team has helped us come up with such simple strategies that we never would have thought of. They have done crisis interventions for when Little Bug's self injuring behavior was getting worse.
They have been there to set realistic expectations for us as parents and to set the bar high for Little Bug. They have never accepted can't or won't but will.
I feel a huge sense of loss at this turning point. I also feel lost. I know we will get through this and innovate and come up with therapies. For now, all I can think is that I would love to give them the world and yet I know that that would never be enough. I can't ever tell them how grateful we are.
Tuesday, July 14, 2009
Seriously hair raising
So last night, Nick and I apparently lost our minds because we decided to do our twice a year hair cut for Little Bug. I remember now why it is only twice a year.
Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.
Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.
Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.
Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.
I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.
Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.
Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.
Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.
Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.
I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.
Thursday, July 9, 2009
It is a gift
I marvel at Little Bug every day, but have been more so recently as the anniversary of his diagnosis has come. I know I have neglected this blog, but I needed some space to appreciate from a distance this gift. Granted a year ago, this was not a gift in any sense of the words. This was a cruel joke that knocked me on my ass and took my breath away. It paralyzed us with fear and tortured us mentally.
I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.
He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.
When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.
Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.
This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.
And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.
To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.
My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.
I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.
I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.
He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.
When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.
Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.
This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.
And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.
To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.
My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.
I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.
Wednesday, July 8, 2009
IEP meeting results
Sorry for the delay... things have been a bit hectic in a mundane way.
We had the IEP meeting, and for the most part, it went well. Little Bug will be going to a special education preschool for 2.5 hours a day 4 days a week.
The meeting starting off a bit rocky as the school district had the IEP completed and stated that they would review it so we could sign it. Given that Nick and I had created three IEP goals for Little Bug's social, adaptive, and speech concerns, this didn't go well.
Luckily, the school backed down quickly and included our ideas. Surprisingly, the only idea they seemed hestitant to include was a goal about him sitting in a chair for at least 5 minutes. Of all the goals to argue about, that was the one I never would have expected.
They thought that if he watched other children do it, he would. We explained, and his current therapists confirmed, that it doesn't work that way. It is simply difficult for him to sit in a chair.
For additional services, he will receive 30 minuts a week of speech and OT.
As we are winding down his stay at Birth to Three, we are trying to flesh out our home program for the summer. We are getting on some waiting lists for OT, will be continuing speech therapy with his current therapist, and have asked his Autism therapist for a list of 10 things to work on for the summer.
All in all pretty successful.
Fourth of July on the other hand, was not successful. Little Bug's auditory defensiveness is increasing. He spent the whole day hiding in the bushes- first because of the airshow practice, then the airshow itself, then the fire trucks, and finally the local fireworks.
He has begun to scream and cover his ears in public whenever there is music, clapping, chopping- at restaraunts, and any other loud noise. We are unsure how to deal with this without going down the noise cancelling head phone road.
In other news, he will be three in 17 days.
We had the IEP meeting, and for the most part, it went well. Little Bug will be going to a special education preschool for 2.5 hours a day 4 days a week.
The meeting starting off a bit rocky as the school district had the IEP completed and stated that they would review it so we could sign it. Given that Nick and I had created three IEP goals for Little Bug's social, adaptive, and speech concerns, this didn't go well.
Luckily, the school backed down quickly and included our ideas. Surprisingly, the only idea they seemed hestitant to include was a goal about him sitting in a chair for at least 5 minutes. Of all the goals to argue about, that was the one I never would have expected.
They thought that if he watched other children do it, he would. We explained, and his current therapists confirmed, that it doesn't work that way. It is simply difficult for him to sit in a chair.
For additional services, he will receive 30 minuts a week of speech and OT.
As we are winding down his stay at Birth to Three, we are trying to flesh out our home program for the summer. We are getting on some waiting lists for OT, will be continuing speech therapy with his current therapist, and have asked his Autism therapist for a list of 10 things to work on for the summer.
All in all pretty successful.
Fourth of July on the other hand, was not successful. Little Bug's auditory defensiveness is increasing. He spent the whole day hiding in the bushes- first because of the airshow practice, then the airshow itself, then the fire trucks, and finally the local fireworks.
He has begun to scream and cover his ears in public whenever there is music, clapping, chopping- at restaraunts, and any other loud noise. We are unsure how to deal with this without going down the noise cancelling head phone road.
In other news, he will be three in 17 days.
Monday, June 29, 2009
IEP tomorrow
Like it says, its tomorrow. Hopefully, things will go as planned. Hopefully, we won't have to be the total hard asses we are planning to be. I really think that with the SLP and the special education teacher we met at his evaluations running the IEP, it should be fine.
Regardless, we are prepared. We have a list of three goals for Speech, Adaptive, and Social/ Emotional development that we have come up. We are also trying to come up a Positive Behavioral Intervention Plan. Given the information about corrective actons- strapping a child into a chair designed for low tone without an explanation- we want to be sure that we have something in place.
Little Bug is humming along marveously. He is beginning to pretend in unscripted ways. Last night, his trucks had a conversation:
TRUCK 1- falls down and says- DAMMIT! (i know we need to work on that)
TRUCK 2- Help you?
TRUCK 1- Peese help!
TRUCK 2- One second, one second. (drives over rather slowly) What doing?
TRUCK 1- Fall down
TRUCK 2- It otay. Get up! (pushes Truck 1 upright)
TRUCK 1- Thank you!
TRUCK 2- Welcome! Be safe! (crashes repeatedly into our dog Frank's leg and then is carried away by his jaws of death)
Minus the swear word- which is mild considering what his daddies' have unthinkingly said- this was amazing! He didn't have anyone prompt him or help him. He just did it. Now, we just need to transfer this over to actual interaction with people- especially peers. Interaction never goes this way in real life.
Regardless, we are prepared. We have a list of three goals for Speech, Adaptive, and Social/ Emotional development that we have come up. We are also trying to come up a Positive Behavioral Intervention Plan. Given the information about corrective actons- strapping a child into a chair designed for low tone without an explanation- we want to be sure that we have something in place.
Little Bug is humming along marveously. He is beginning to pretend in unscripted ways. Last night, his trucks had a conversation:
TRUCK 1- falls down and says- DAMMIT! (i know we need to work on that)
TRUCK 2- Help you?
TRUCK 1- Peese help!
TRUCK 2- One second, one second. (drives over rather slowly) What doing?
TRUCK 1- Fall down
TRUCK 2- It otay. Get up! (pushes Truck 1 upright)
TRUCK 1- Thank you!
TRUCK 2- Welcome! Be safe! (crashes repeatedly into our dog Frank's leg and then is carried away by his jaws of death)
Minus the swear word- which is mild considering what his daddies' have unthinkingly said- this was amazing! He didn't have anyone prompt him or help him. He just did it. Now, we just need to transfer this over to actual interaction with people- especially peers. Interaction never goes this way in real life.
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