We almost lost my mother-in-law last night. She's been ill for a while and took a turn for the worse last night. We were all called to the hospital, luckily she pulled through. As we were waiting for word from the doctor, I wondered......how do I handle a death with the boys????
Nick will understand and work through it. It may take him a while to work through his emotions, but we can work with his people at school and his therapist. It's amazing how black and white his mind is. When Tim told him today that she was sick, he asked if she was going to die. Tim told him that she almost did last night and Nick's response was that since she didn't, she was ok. She is far from ok.
I wonder about Nate and Noah.....How do you explain death to these two? It's not even a word in their very limited vocabulary. They couldn't be present for the wake......I'm afraid they would try to wake her up or something that people would find very offensive. Nick couldn't handle the wake either. His anxiety would totally take over. He would pace and pace.
As I laid awake last night I wondered if Nate and Noah would even notice that she wasn't around any more. I like to think that they would. They love her very much. Especially Nate, they share a special bond. But, what would I do when Nate says, "I want Ma."? Will I just tell him that she's not home? I honestly don't know. I have never thought about this. I have worried about so many things, but not this. Now I guess it's time to start.
Another thought crossed my mind last night. If I died, would Nate and Noah realize I was gone? Would they mourn me? Would Tim ever tell them even though they couldn't understand? Would they know that I had loved them with every ounce of my being?
Saturday, October 9, 2010
Friday, October 1, 2010
Last night's episode of Private Practice
Last night's episode of Private Practice was very powerful. One particular storyline spoke to me. The character was a single mother with a 12 year old autistic boy. The boy was good sized and appeared to be low fuctioning (he never spoke in the episode).
The mother was being treated for migraines with prescription marijuana. While she and her son were at the doctor's office, she admitted that she stopped giving him his prescribed meds and was giving him the marijuana to help calm him down. She later told one of the doctors that she was at the end of her rope. She didn't know what else to do. All the other therapies and meds they had tried didn't help. She was exhausted. The doctor tried to tell her that he understood and she started yelling at him that he didn't. No one did. I know how she felt.....
I may tell you what it's like to clean up poop over and over again, but you haven't had to do it. You support me in my decision to send Nate to a special school, but you don't know what it's like to realize that he won't ever drive a car. My friends pitch in and help me when they can, but they don't know what it's like to be trapped at home with the boys because I can't take all 3 of them out by myself.
The doctor refused to give her another prescription for marjuana. A few days later she brought her son to see the doctor. He was suffering from withdrawl and was even more agitated and physical than before. The doctor promised help. Later in the episode, the boy was rushed to the hospital. His mother had bought marjuana on the street to give him. She did not know that it was laced with PCP. She was arrested. Did she mean to harm her child? No. Did she know where else to turn? No.
I applaud the writer for bringing this story to prime time. There are many parents who feel this helpless. Would I give Noah marajuana to calm him down? Right now, I can say no. But, I'm not a single mom doing it all by myself. We have tried various hyperactivity meds for Noah, but they just don't work. In 5 years when he is so much bigger and stronger, I may reach my breaking point.
I was surprised that the doctors didn't try to bring in any in-home help for her. I am sure that respite care exhists in the state of California. I know that I could not survive without my respite care. I really missed mine tonight as I was cleaning up a poop covered Noah and bathroom. The doctor also didn't mention any support groups for her or having her see a therapist. I do think that the writers fell short in these areas. If you want to give the message that she made a bad decision, you should give many alternatives.
The mother was being treated for migraines with prescription marijuana. While she and her son were at the doctor's office, she admitted that she stopped giving him his prescribed meds and was giving him the marijuana to help calm him down. She later told one of the doctors that she was at the end of her rope. She didn't know what else to do. All the other therapies and meds they had tried didn't help. She was exhausted. The doctor tried to tell her that he understood and she started yelling at him that he didn't. No one did. I know how she felt.....
I may tell you what it's like to clean up poop over and over again, but you haven't had to do it. You support me in my decision to send Nate to a special school, but you don't know what it's like to realize that he won't ever drive a car. My friends pitch in and help me when they can, but they don't know what it's like to be trapped at home with the boys because I can't take all 3 of them out by myself.
The doctor refused to give her another prescription for marjuana. A few days later she brought her son to see the doctor. He was suffering from withdrawl and was even more agitated and physical than before. The doctor promised help. Later in the episode, the boy was rushed to the hospital. His mother had bought marjuana on the street to give him. She did not know that it was laced with PCP. She was arrested. Did she mean to harm her child? No. Did she know where else to turn? No.
I applaud the writer for bringing this story to prime time. There are many parents who feel this helpless. Would I give Noah marajuana to calm him down? Right now, I can say no. But, I'm not a single mom doing it all by myself. We have tried various hyperactivity meds for Noah, but they just don't work. In 5 years when he is so much bigger and stronger, I may reach my breaking point.
I was surprised that the doctors didn't try to bring in any in-home help for her. I am sure that respite care exhists in the state of California. I know that I could not survive without my respite care. I really missed mine tonight as I was cleaning up a poop covered Noah and bathroom. The doctor also didn't mention any support groups for her or having her see a therapist. I do think that the writers fell short in these areas. If you want to give the message that she made a bad decision, you should give many alternatives.
Tuesday, September 28, 2010
Nate got in trouble......
Every day, I get a note in Nate's backpack telling me what he had for lunch and what he had for snack. We use this information to ask questions about his day. We usually start with concrete questions about his lunch and snack. We are working on his ability to answer questions about his day.
Yesterday, his note said that he did not get snack. Apparently, he did not use his words to ask for a snack. He had to sit there and watch his friends have snack without him. I think that's great! Even though he is special, he still needs to follow directions and be help accountable for his actions or, in this case, lack of actions. I can't think of a more meaningful consequence for him than to have to watch his friends eat and enjoy a yummy snack.
Today, Nate did not come to line up at the end of recess. His teacher had to call him several times while his friends were lined up and ready to go inside. When Nate finally came over, his teacher made him sit down and told the rest of class to go play more. Nate had to sit and watch his friends get more play time. His teacher told Nate that when it's time to come in, he needs to listen and follow directions. Again, a very meaningful consequence.
I applaud Nate's teacher! He has to learn and sometimes it is difficult to dole out a meaningful consequence to someone who is impaired. We expect Nate to follow the rules and expect him to have consequences when he doesn't.
Yesterday, his note said that he did not get snack. Apparently, he did not use his words to ask for a snack. He had to sit there and watch his friends have snack without him. I think that's great! Even though he is special, he still needs to follow directions and be help accountable for his actions or, in this case, lack of actions. I can't think of a more meaningful consequence for him than to have to watch his friends eat and enjoy a yummy snack.
Today, Nate did not come to line up at the end of recess. His teacher had to call him several times while his friends were lined up and ready to go inside. When Nate finally came over, his teacher made him sit down and told the rest of class to go play more. Nate had to sit and watch his friends get more play time. His teacher told Nate that when it's time to come in, he needs to listen and follow directions. Again, a very meaningful consequence.
I applaud Nate's teacher! He has to learn and sometimes it is difficult to dole out a meaningful consequence to someone who is impaired. We expect Nate to follow the rules and expect him to have consequences when he doesn't.
Tuesday, September 21, 2010
I hate autism because........
Nate is sick.....we didn't know he was sick....he seemed just fine. His teacher emailed me yesterday that Nate didn't eat any lunch and fell asleep during Music Therapy. This is not like Nate, he never misses a meal and has to be medicated to sleep.
I called the doctor and Tim took him in. He has an ear infection that has progressed so much that his eardrum was blistered. Tim said the doctor looked a little upset and tried to kindly ask, "Did you really not know he was sick?" Tim replied, "This is the child who walked around for two days with a ruptured appendix."
So this is one of the reasons that I hate autism......My child can not tell me he doesn't feel well. We have to rely on watching his behaviors and trusting our instincts. I am grateful that the teacher emailed me. I forgot that he was in a new building and not with the people who know him so well. His teacher now knows the signs when he does not feel well.
I called the doctor and Tim took him in. He has an ear infection that has progressed so much that his eardrum was blistered. Tim said the doctor looked a little upset and tried to kindly ask, "Did you really not know he was sick?" Tim replied, "This is the child who walked around for two days with a ruptured appendix."
So this is one of the reasons that I hate autism......My child can not tell me he doesn't feel well. We have to rely on watching his behaviors and trusting our instincts. I am grateful that the teacher emailed me. I forgot that he was in a new building and not with the people who know him so well. His teacher now knows the signs when he does not feel well.
Friday, September 10, 2010
dental work
Going to the dentist is a NIGHTMARE! Nate and Noah just cannot tolerate it. Noah starts screaming the minute we pull in the parking lot. Nate is getting better. He just says, "No thank you" over and over again. We can still hold Noah down to get his teeth cleaned, but not Nate. So, every two years, we take Nate to the hospital for dental work.
This is not an easy process. First, we call all of his doctors to let them know he will be under anesthesia and see if they want any blood work done. (If he can't tolerate the dentist, can you imagine what he's like with a needle?) We then have a pre-surgery physical. At this physical, Nate was 5 ft 8 in and 156 lbs. He and I are exactly the same size. Thank God he is not violent. I wouldn't be able to control him. Then, I have a lengthy discussion with the doctors to see how they can best help Nate get through the anesthesia.
Luckily Nate was the first surgery today. His procedure was scheduled for 7:45 am and we had to be at the hospital at 6:15. He knew something was up when we pulled in the garage. He really fought the blood pressure cuff today, but put on the gown without a fight. The dentist came in to tell us that he planned on pulling one tooth, taking x-rays, and cleaning his teeth. Nate was also having some fasting bloodwork done. The nurse thought I was joking when I asked for a haircut and a facial......I wasn't! I wanted him to get a flu shot while he was asleep, but the hospital hasn't received theirs yet. I think someone from the hospital should now have to take Nate to get his flu shot.
Two other doctors came in to start the meds. They each had a syringe that they shot up his nose. It took 5 of us to hold him down. The medicine made him groggy, but did not put him to sleep. They came back with a gown, booties, and cap for Tim. Tim had to help get him into the operating room and hold Nate down while they put the mask on him to get him asleep. I still don't think Nate has forgiven Tim.
He was in surgery for a little over 1 hour. They can't start the iv until Nate is out. This time they put it in his foot. I think that was better than the hand. They called us as soon as he went to Recovery. It's very tricky in Recovery. They have to get the iv out befor Nate wakes up and rips it out, but it has to stay in long enough to give him fluids. This time he slept for over an hour after surgery so they were able to leave it in longer. The first time they wrapped the iv and his arm so tightly that he started banging his arm on the bed rail and hurt himself. Nate did not have any cavities....this surprises me. I brush his teeth every day, but his oral motor skills are so poor that he can't pull his lips back far enough to get a good brushing. They only pulled one tooth. Since Nate can't tolerate braces, the dentist will pull teeth from the back to keep the front 8 straight.
As soon as Nate woke up he was ready to leave. He barely tolerated the post op exam from the nurse and was insisting on leaving. "I want bye bye doctor." Luckily, he did not need stitches in his mouth. He has found the wound with his tongue, but I hope that it will be much better tomorrow. He had pancakes for lunch (soft food), but was ready for pizza for dinner.
This was a long, hard day. It was physically and emotionally draining. I think the last person Nate wants to see again is the dentist.
This is not an easy process. First, we call all of his doctors to let them know he will be under anesthesia and see if they want any blood work done. (If he can't tolerate the dentist, can you imagine what he's like with a needle?) We then have a pre-surgery physical. At this physical, Nate was 5 ft 8 in and 156 lbs. He and I are exactly the same size. Thank God he is not violent. I wouldn't be able to control him. Then, I have a lengthy discussion with the doctors to see how they can best help Nate get through the anesthesia.
Luckily Nate was the first surgery today. His procedure was scheduled for 7:45 am and we had to be at the hospital at 6:15. He knew something was up when we pulled in the garage. He really fought the blood pressure cuff today, but put on the gown without a fight. The dentist came in to tell us that he planned on pulling one tooth, taking x-rays, and cleaning his teeth. Nate was also having some fasting bloodwork done. The nurse thought I was joking when I asked for a haircut and a facial......I wasn't! I wanted him to get a flu shot while he was asleep, but the hospital hasn't received theirs yet. I think someone from the hospital should now have to take Nate to get his flu shot.
Two other doctors came in to start the meds. They each had a syringe that they shot up his nose. It took 5 of us to hold him down. The medicine made him groggy, but did not put him to sleep. They came back with a gown, booties, and cap for Tim. Tim had to help get him into the operating room and hold Nate down while they put the mask on him to get him asleep. I still don't think Nate has forgiven Tim.
He was in surgery for a little over 1 hour. They can't start the iv until Nate is out. This time they put it in his foot. I think that was better than the hand. They called us as soon as he went to Recovery. It's very tricky in Recovery. They have to get the iv out befor Nate wakes up and rips it out, but it has to stay in long enough to give him fluids. This time he slept for over an hour after surgery so they were able to leave it in longer. The first time they wrapped the iv and his arm so tightly that he started banging his arm on the bed rail and hurt himself. Nate did not have any cavities....this surprises me. I brush his teeth every day, but his oral motor skills are so poor that he can't pull his lips back far enough to get a good brushing. They only pulled one tooth. Since Nate can't tolerate braces, the dentist will pull teeth from the back to keep the front 8 straight.
As soon as Nate woke up he was ready to leave. He barely tolerated the post op exam from the nurse and was insisting on leaving. "I want bye bye doctor." Luckily, he did not need stitches in his mouth. He has found the wound with his tongue, but I hope that it will be much better tomorrow. He had pancakes for lunch (soft food), but was ready for pizza for dinner.
This was a long, hard day. It was physically and emotionally draining. I think the last person Nate wants to see again is the dentist.
Friday, September 3, 2010
enjoying the ride
Things have been crazy busy with school starting. It was worse this year because my school started before the boys' did. That made it difficult to get into their classrooms with all their stuff and have lengthy discussions with their teachers. We took Nate and Noah into each of their new schools every day for over a week to help the transition.
I am convinced that Southview is the place for Nate. I actually got an email from his teacher last week that said, "Nate fits in really well here." I have NEVER been told that he fits in anywhere! I can't tell you how that made me feel. Even though it is difficult to tell, I am convinced that Nate is happy. He just seems less stressed. I am told that he really enjoys the cooking. They made pancakes on the first day of school and I think he was sold.
Noah is also off to a good start. He has only had tantrums on two days.....the first day (expected) and yesterday when they couldn't go outside for recess due to rain. He also has stayed dry more days than he has had accidents. He has not kicked or hit anyone. He was able to go to the library with his kindergarten class and check out a book. He eats a school lunch in the cafeteria....I am not making his lunch every day and he is expanding his food choices. I keep chicking in with his teacher and she keeps assuring me that his is doing well. I always ask her, "Noah Hill...you know blonde hair, tall....?" I have to wonder if part of the difference is fewer kids in his classroom. Noah is in the "autism room" with only 5 kids and 6 adults. Last year, in preschool, there were 15 students and only 5 adults.
Both boys are receiving two hours of speech and one hour of OT a week at home through Tim's health insurance. That has been fabulous! I also just spoke to a representative at the insurance company that assured me that they would put the Autism Bill into effect January 1st instead of October 1st. The law states that the servies must begin on or before the anniversary date of the policy. I freaked out when I learned that our anniversary date was October 1. That just seems cruel, doesn't it? The Autism Bill will provide ABA for $40,000 per year per child. I am hoping that it will help increase the number of speech and OT visits per year and allow for Music Therapy.
I am not used to things going so smoothly. My boss even commented on how happy I seemed. My reply was that if the boys are doing well, so am I. I am so used to constantly having some sort of battle to fight that I almost don't know what to do. Right now I think I will just sit back and enjoy the ride.
I am convinced that Southview is the place for Nate. I actually got an email from his teacher last week that said, "Nate fits in really well here." I have NEVER been told that he fits in anywhere! I can't tell you how that made me feel. Even though it is difficult to tell, I am convinced that Nate is happy. He just seems less stressed. I am told that he really enjoys the cooking. They made pancakes on the first day of school and I think he was sold.
Noah is also off to a good start. He has only had tantrums on two days.....the first day (expected) and yesterday when they couldn't go outside for recess due to rain. He also has stayed dry more days than he has had accidents. He has not kicked or hit anyone. He was able to go to the library with his kindergarten class and check out a book. He eats a school lunch in the cafeteria....I am not making his lunch every day and he is expanding his food choices. I keep chicking in with his teacher and she keeps assuring me that his is doing well. I always ask her, "Noah Hill...you know blonde hair, tall....?" I have to wonder if part of the difference is fewer kids in his classroom. Noah is in the "autism room" with only 5 kids and 6 adults. Last year, in preschool, there were 15 students and only 5 adults.
Both boys are receiving two hours of speech and one hour of OT a week at home through Tim's health insurance. That has been fabulous! I also just spoke to a representative at the insurance company that assured me that they would put the Autism Bill into effect January 1st instead of October 1st. The law states that the servies must begin on or before the anniversary date of the policy. I freaked out when I learned that our anniversary date was October 1. That just seems cruel, doesn't it? The Autism Bill will provide ABA for $40,000 per year per child. I am hoping that it will help increase the number of speech and OT visits per year and allow for Music Therapy.
I am not used to things going so smoothly. My boss even commented on how happy I seemed. My reply was that if the boys are doing well, so am I. I am so used to constantly having some sort of battle to fight that I almost don't know what to do. Right now I think I will just sit back and enjoy the ride.
Wednesday, August 11, 2010
Help Arrived Today
Help arrived today!!!! Let me rephrase that......FREE help arrived today!!!!!!
After the last poop incident, I called an agency to get some professional help in the house. I know the owner from work (she worked for SSD and went out on her own). After our initial phone call, she called me back with a proposition. She was contacted by a woman who was training to become an ABA provider and needed to be supervised. She could not work with a family that was receiving services from the Department of Mental Health. So, she will come in once a week, make a behavior plan for Noah and the toilet, and train other people to help us. When they find people to staff Noah, I will have to pay them. However, they aren't nearly as expensive as the ABA person who is coming up with the behavior plan and staying on top of things to make sure it's implemented. She will come on Friday nights since the other therapists don't come those nights. Yay!!!!!
When she asked about goals, all I could think about was getting him toilet trained. She will also focus on sitting at the table while eating (he takes one bite and runs around the table), getting dressed (and STAYING dressed), and brushing his teeth. I am so excited to have someone in the house whose sole purpose is to teach Noah these things. They won't have to worry about the other two boys, cooking dinner, doing laundry, etc.
I threw her into the fire today. I had her sit with Noah at dinner to make sure he used his fork and stayed in his seat. Then, she gave him a bath and used that time to reinforce learning body parts. Do you want to know how good he was tonight? It figures, when I have someone to help, he's good. Next week she is coming Wednesday....that's also his first day of school. Any guesses on what he'll be like the next time she sees him?????
After the last poop incident, I called an agency to get some professional help in the house. I know the owner from work (she worked for SSD and went out on her own). After our initial phone call, she called me back with a proposition. She was contacted by a woman who was training to become an ABA provider and needed to be supervised. She could not work with a family that was receiving services from the Department of Mental Health. So, she will come in once a week, make a behavior plan for Noah and the toilet, and train other people to help us. When they find people to staff Noah, I will have to pay them. However, they aren't nearly as expensive as the ABA person who is coming up with the behavior plan and staying on top of things to make sure it's implemented. She will come on Friday nights since the other therapists don't come those nights. Yay!!!!!
When she asked about goals, all I could think about was getting him toilet trained. She will also focus on sitting at the table while eating (he takes one bite and runs around the table), getting dressed (and STAYING dressed), and brushing his teeth. I am so excited to have someone in the house whose sole purpose is to teach Noah these things. They won't have to worry about the other two boys, cooking dinner, doing laundry, etc.
I threw her into the fire today. I had her sit with Noah at dinner to make sure he used his fork and stayed in his seat. Then, she gave him a bath and used that time to reinforce learning body parts. Do you want to know how good he was tonight? It figures, when I have someone to help, he's good. Next week she is coming Wednesday....that's also his first day of school. Any guesses on what he'll be like the next time she sees him?????
Subscribe to:
Posts (Atom)