Liberty had his six month dental appointment yesterday for a check and a cleaning. I remember how much I hated going to the dentist when I was a kid but, though it may sound odd, I always look forward to going to Liberty's dentist.
First of all, he is a pediatric dentist. Second of all, he has family members with children with autism, either Asperger's or severe autism or brain injury. He is always warm and cordial to me, and asks questions that let me know that he is "in the know" about autism. He asks me how I'm doing and he really means it. Kids love the atmosphere (adults, too). The walls are filled with over-sized paintings of Dr. Seuss characters. In the center of the waiting room, there is a long table with a Lego base on it. All the kids line up around the table and stack and unstack buckets of Legos in various shapes and sizes.
The staff is unbelievably kind. It takes a "team" to clean Lib's teeth. It's scary for any child to have metal instruments placed in their mouths, not to mention the discomfort of the vibrating mechanical tool used to polish teeth. And, they used a little instrument to keep his mouth open yesterday. He cried, but he was okay. Four voices were soothing him in unison. I have to kind of throw my body over his legs. He kicks his shoes off. His strength surprises me every time. I'm always exhausted afterward, like I've been roping cattle. Even so, this time, Lib was not hysterical or anything, just annoyed and a little frightened.
One of the staff that was helping us hold Lib on the dentist's table told me that no other dentist in town will see any child who cannot lie down and be still! That means, all of the children with special needs come here to this place. It breaks my heart.
I was reminded of how much help I need from others to raise my son. The dentist, the doctor, the hair cutter, the teachers, the therapists, the neighbors, a decent understanding phlebotomist at the lab, et cetera.
The village of Those Who Understand. The Compassionate. The Competent.
When the cleaning by the hygienist was over, the dentist came in to examine Lib's teeth. They are growing in straight, taking after his father thank God, and no cavities. According to the dentist, "Perfect." A word that is music to my ears.
After they were done, Lib got up off the table, high-fived the dentist, and, smiling, ran out into the waiting room and sat down beside the other children at the table to play. No grabbing Legos from other children, no shoving, no yelling.
Lib is coming along in his own time, but Dr. Stu Bonnin made this whole experience not only possible but more than bearable. I absolutely love him, and, he remains, at the top of my gratitude list.
Tuesday, February 17, 2009
Friday, February 13, 2009
Thursday, February 12, 2009
Don't let the hogs in
So, I have this dream, that I am watching waves breaking on the ocean and when each wave crests, I see the opaque outline of a great white shark. I am on the shore, not in the water. But I see it. I know that it is there. With each wave that breaks. The water is this translucent pale blue green. It's a sunny day. Crystal clear. And the shark is there.
Okay, so maybe I've watched Jaws too many times, but I know what this represents to me on a gut soul level.
Emotionally, I have really been pulled through a knothole.
My father had to be moved from the nursing home/rehab center we first put him in because of the negligent lack of care. It was very depressing. I watched my father's spirit sag there and it scared me to death. Thank God we were able to remove him and find another place which really has been a lifesaver. He likes it there. He has a roommate who also flew during WWII who is pleasant and helpful. He has hope now that he can and will get better. He is in physical therapy twice a day, building strength. He is learning to walk with a walker. They are aiming for retraining him to live by himself at home and be safe. But, he has other problems to contend with, that of his feet and legs swelling all of the time. On the one hand he needs to get up and walk, and on the other hand, he has to have his feet elevated all of the time. And there are just other issues that go with growing older. The chemistry has to be constantly tested and balanced. I wish it were as easy as walking right out of there and back to his old routine.
I've been either at the hospital or rehab center since the end of January and Dad's always on my mind. He said to me today, "Oh, to get up in the morning and go start my coffee, how I miss that simple act." It will be three weeks on Sunday since he has been home.
Then my precious older sister whom I adore had to take a job in another state. She has been packing all week, and as of today, everything is in storage, her car is packed to the hilt, and she is staying with my other sister here, so she can take off bright and early Saturday morning. It will be very hard for me to drive by her empty apartment. I am not looking forward to saying good-bye again.
Too hard. How I will miss her.
Then, there's my sweet boy. Always, the questions in my mind, making mental note of this and that to ask the doctor, staying on top of his supplement schedule, his special food that has to be shopped for and prepared. You know I can keep the ball rolling, I've gotten good at juggling. But I'm really tired and it isn't resolved with one good night's sleep.
I think I am just emotionally spent.
Lib is not communicating well, either. It's like he forgot all of his signs. My fears are cropping up like weeds. It's so important for me to keep my thoughts in check. A couple of negative thoughts and it starts the ball rolling to mushroom into a such a depressed state I can hardly do anything. And usually, at it's root is the fact that I'm very tired.
The other day when I walked around the neighborhood? I yawned the whole way. I think that's a sign.
And when I'm tired I am vulnerable to all of my fears. You know, the "what if's?" And, then I even have some flashbacks of my father when he came out of surgery, and he was in pain. I've never seen him in that kind of pain before in my life, like they just brought him in from the battlefield.
Emotionally vulnerable. To all kinds of fears. Got it.
It's no wonder my Great White shows up, the warning symbol from my wonderful guidance system: "Be alert. Don't open the gate and let the hogs run wild through your carefully cultivated garden!"
Extreme self care, somehow I have to get there. And, I guess it has to start with sleep and doing less for awhile. And appreciating more.
Okay, so maybe I've watched Jaws too many times, but I know what this represents to me on a gut soul level.
Emotionally, I have really been pulled through a knothole.
My father had to be moved from the nursing home/rehab center we first put him in because of the negligent lack of care. It was very depressing. I watched my father's spirit sag there and it scared me to death. Thank God we were able to remove him and find another place which really has been a lifesaver. He likes it there. He has a roommate who also flew during WWII who is pleasant and helpful. He has hope now that he can and will get better. He is in physical therapy twice a day, building strength. He is learning to walk with a walker. They are aiming for retraining him to live by himself at home and be safe. But, he has other problems to contend with, that of his feet and legs swelling all of the time. On the one hand he needs to get up and walk, and on the other hand, he has to have his feet elevated all of the time. And there are just other issues that go with growing older. The chemistry has to be constantly tested and balanced. I wish it were as easy as walking right out of there and back to his old routine.
I've been either at the hospital or rehab center since the end of January and Dad's always on my mind. He said to me today, "Oh, to get up in the morning and go start my coffee, how I miss that simple act." It will be three weeks on Sunday since he has been home.
Then my precious older sister whom I adore had to take a job in another state. She has been packing all week, and as of today, everything is in storage, her car is packed to the hilt, and she is staying with my other sister here, so she can take off bright and early Saturday morning. It will be very hard for me to drive by her empty apartment. I am not looking forward to saying good-bye again.
Too hard. How I will miss her.
Then, there's my sweet boy. Always, the questions in my mind, making mental note of this and that to ask the doctor, staying on top of his supplement schedule, his special food that has to be shopped for and prepared. You know I can keep the ball rolling, I've gotten good at juggling. But I'm really tired and it isn't resolved with one good night's sleep.
I think I am just emotionally spent.
Lib is not communicating well, either. It's like he forgot all of his signs. My fears are cropping up like weeds. It's so important for me to keep my thoughts in check. A couple of negative thoughts and it starts the ball rolling to mushroom into a such a depressed state I can hardly do anything. And usually, at it's root is the fact that I'm very tired.
The other day when I walked around the neighborhood? I yawned the whole way. I think that's a sign.
And when I'm tired I am vulnerable to all of my fears. You know, the "what if's?" And, then I even have some flashbacks of my father when he came out of surgery, and he was in pain. I've never seen him in that kind of pain before in my life, like they just brought him in from the battlefield.
Emotionally vulnerable. To all kinds of fears. Got it.
It's no wonder my Great White shows up, the warning symbol from my wonderful guidance system: "Be alert. Don't open the gate and let the hogs run wild through your carefully cultivated garden!"
Extreme self care, somehow I have to get there. And, I guess it has to start with sleep and doing less for awhile. And appreciating more.
Friday, February 6, 2009
I'm Back
I feel like I've been on another planet. Well, I have. Planet Hospital. Thank God my father was released from there yesterday to a nursing home/rehabilitation center. He was on his back for so long he has to re-learn how to get his muscles moving to be able to walk. I told him he is one step closer to home. This place is almost across the street from his condo so he really is almost home.
He came through both operations, a pacemaker and very large hernia operation with flying colors. I don't think I could have done as well, really. For 91 years old, he's an amazing man. And the nurses just loved him.
Stay away from hospitals anyway you can! 's all I'm sayin! The longer you stay, the more you don't know "who's on first," and the greater your risk of getting sicker. I don't know how we will ever change things, but somehow we have to. The patient seems to fall through the cracks of the system. And when they are done with you, boy are they done. They practically throw you out!
Meanwhile, back at the ranch, Liberty has been doing well. He's past his second round of chelation. He has made leaps and bounds in his ability to do things for himself. He has really made huge strides in going to the potty on his own now. His constipation that was the rule rather than the exception for years is now a thing of the past. He is eating well and he loves his Glutino blueberry bars that have lots and lots of fiber in them. He is understanding more that is said to him without gesture, and he initiates signs and activities at school. His report card came home and he has met so many of his goals that I think by the end of the year, he will have met them all. This is all wonderful and I am so grateful. He is light years from where he was last year.
That being said, speech still eludes us. I do hear more and more effort at trying to speak, though. Perhaps the chelation is helping with this. We will do tests on the fourth round to see what he is actually spilling and go from there. I see progress, though, and that is the main thing. I dream of my little boy being able to talk to his granddad and I know my father does, too.
I hope soon my father can be back at his place, listening to his classical music turned up full blast on his Bose, sipping a glass of wine, watching his birds on the feeders, reading, and sending out his daily email posting to our "tribal council" which consists of my extended family and two women who are the daughters of my father's gunner on his airplane he flew during WWII. My dad is otherwise known as "Talking Bear." My son is "Little Bear." Dad, in fact, assigned us all tribal names. He is a character and loved by everyone.
So, my mind is on rehab for my dad and therapy for my son. I am looking into the horseback riding therapy for the Spring since my son had such a good reaction to a therapy horse back in the Fall. I'm looking at a new neurologist in town who is now a DAN-certified practitioner. We have two in our tiny little town now which is nothing short of amazing.
And, at the top of my list for 2009: Me. Yeah, me. I decided that I have to have time to do something for myself, but more than that, I have to pencil myself in somewhere. You hear women talk about this all of the time, we put ourselves last. But with a child with special needs, you really don't think about yourself for so long. The effects for me are striking now though, the lack of sleep for years, the lack of self care like hair appointments, keeping up my nails, exercise, eating right...the whole deal. I have to get that back for me. I've done a pretty good job, I think, considering all we have been through with the Libster.
Now, it's time for me to do a good job with myself. So, today, I'm donning my old walking shoes, bundling up, and going for my 1.5 mile trip around the neighborhood. And, who knows, maybe when I get back I'll even take a vitamin!
He came through both operations, a pacemaker and very large hernia operation with flying colors. I don't think I could have done as well, really. For 91 years old, he's an amazing man. And the nurses just loved him.
Stay away from hospitals anyway you can! 's all I'm sayin! The longer you stay, the more you don't know "who's on first," and the greater your risk of getting sicker. I don't know how we will ever change things, but somehow we have to. The patient seems to fall through the cracks of the system. And when they are done with you, boy are they done. They practically throw you out!
Meanwhile, back at the ranch, Liberty has been doing well. He's past his second round of chelation. He has made leaps and bounds in his ability to do things for himself. He has really made huge strides in going to the potty on his own now. His constipation that was the rule rather than the exception for years is now a thing of the past. He is eating well and he loves his Glutino blueberry bars that have lots and lots of fiber in them. He is understanding more that is said to him without gesture, and he initiates signs and activities at school. His report card came home and he has met so many of his goals that I think by the end of the year, he will have met them all. This is all wonderful and I am so grateful. He is light years from where he was last year.
That being said, speech still eludes us. I do hear more and more effort at trying to speak, though. Perhaps the chelation is helping with this. We will do tests on the fourth round to see what he is actually spilling and go from there. I see progress, though, and that is the main thing. I dream of my little boy being able to talk to his granddad and I know my father does, too.
I hope soon my father can be back at his place, listening to his classical music turned up full blast on his Bose, sipping a glass of wine, watching his birds on the feeders, reading, and sending out his daily email posting to our "tribal council" which consists of my extended family and two women who are the daughters of my father's gunner on his airplane he flew during WWII. My dad is otherwise known as "Talking Bear." My son is "Little Bear." Dad, in fact, assigned us all tribal names. He is a character and loved by everyone.
So, my mind is on rehab for my dad and therapy for my son. I am looking into the horseback riding therapy for the Spring since my son had such a good reaction to a therapy horse back in the Fall. I'm looking at a new neurologist in town who is now a DAN-certified practitioner. We have two in our tiny little town now which is nothing short of amazing.
And, at the top of my list for 2009: Me. Yeah, me. I decided that I have to have time to do something for myself, but more than that, I have to pencil myself in somewhere. You hear women talk about this all of the time, we put ourselves last. But with a child with special needs, you really don't think about yourself for so long. The effects for me are striking now though, the lack of sleep for years, the lack of self care like hair appointments, keeping up my nails, exercise, eating right...the whole deal. I have to get that back for me. I've done a pretty good job, I think, considering all we have been through with the Libster.
Now, it's time for me to do a good job with myself. So, today, I'm donning my old walking shoes, bundling up, and going for my 1.5 mile trip around the neighborhood. And, who knows, maybe when I get back I'll even take a vitamin!
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