I went to a young child's birthday party yesterday. OK, that sounds like I stayed for a while.....I made it 20 minutes.....
I went by myself...first mistake. They have a dog, so I couldn't take Nate. I get so tired of having to explain that no, my 15 year old son is not a pervert because petting a dog gives him an erection. So, if he had gone, it would have taken all my energy to keep him away from the dog. I couldn't take Noah...there are so many reasons that I couldn't take Noah... The way that people usually look at him or me when he's with me is just too hard to take. So, I went by myself.
I made it 20 minutes. I was sitting there watching all these little kids...perfectly developing kids..and I realized This Is Not My Life. I have nothing in common with these people. It's so hard to watch them play and talk and interact with each other and their parents. This Is Not My Life....it was my dream, but it's not my life. My life involves medication and juggling all the therapies, not play dates.
So I left...and cried. Some days I'm just not that strong.
Monday, August 19, 2013
Friday, July 26, 2013
Nate has a resume
St. Louis ARC has a great summer program, Teens in Motion. This was Nate's second year attending. He had such a good time and acquired some good work experience.
Every day had both a volunteering opportunity and a social opportunity. He volunteered at nine different locations where he learned and used many skills. He did various activities from folding pizza boxes to making cards for sick children to doing light landscaping. They even made baked goods and sold them at a bake sale.
After they volunteered in the morning, they spent the afternoon having fun throughout St. Louis. They went to the zoo, rode Metrolink, jumped at Skyzone, and went swimming. By doing these fun activities Nate was able to increase his independence. He had to order his own food at restaurants and pay for all his recreation activities.
He had such a great summer! It was very easy to get him up in the mornings when I told him he was going to camp. He was always ready to leave on time and had his backpack, lunch, and wallet. He came home with his own résumé!
Every day had both a volunteering opportunity and a social opportunity. He volunteered at nine different locations where he learned and used many skills. He did various activities from folding pizza boxes to making cards for sick children to doing light landscaping. They even made baked goods and sold them at a bake sale.
After they volunteered in the morning, they spent the afternoon having fun throughout St. Louis. They went to the zoo, rode Metrolink, jumped at Skyzone, and went swimming. By doing these fun activities Nate was able to increase his independence. He had to order his own food at restaurants and pay for all his recreation activities.
He had such a great summer! It was very easy to get him up in the mornings when I told him he was going to camp. He was always ready to leave on time and had his backpack, lunch, and wallet. He came home with his own résumé!
Thursday, July 4, 2013
We'll sit out the fireworks
It's 9:20 pm on July 4th and Nate and Noah are in bed. It's not because they aren't patriotic, it's just that the way most Americans celebrate the 4th is just too hard.
Our family always has a celebration. We used to all go, but it was always a miserable day for Nate and Noah. We were in a house they weren't used to and there were many new people. Both of these factors are difficult. I always struggle with the boys around new people. Their behavior can be unpredictable and not everyone is open and understanding. I usually spend most of the time worrying about their behavior and trying to explain it to new people. They are stressed, I am stressed. Not a good combination.
The local carnivals are also difficult. They are so crowded. Also, they don't allow the boys to jump to the front of the line, so waiting to ride a ride is tough. Put that on top of a hot, crowded group of people and they aren't understanding.
The fireworks are a nightmare. They are so loud that the boys just cover their ears and try to leave. We have even tried to watch them from the car.....didn't work.
So the best solution for us is simple... I stay home with Nate and Noah and Tim takes Nick to the picnic with his family.
Our family always has a celebration. We used to all go, but it was always a miserable day for Nate and Noah. We were in a house they weren't used to and there were many new people. Both of these factors are difficult. I always struggle with the boys around new people. Their behavior can be unpredictable and not everyone is open and understanding. I usually spend most of the time worrying about their behavior and trying to explain it to new people. They are stressed, I am stressed. Not a good combination.
The local carnivals are also difficult. They are so crowded. Also, they don't allow the boys to jump to the front of the line, so waiting to ride a ride is tough. Put that on top of a hot, crowded group of people and they aren't understanding.
The fireworks are a nightmare. They are so loud that the boys just cover their ears and try to leave. We have even tried to watch them from the car.....didn't work.
So the best solution for us is simple... I stay home with Nate and Noah and Tim takes Nick to the picnic with his family.
Sunday, June 16, 2013
Father's Day
I am always talking about how the boys' diagnoses have affected me. Sometimes I forget that they have also affected Tim.
I have never seen a father-son relationship like Tim and his dad's. The mutual love, respect, and admiration is so beautiful to see. Tim will always cherish the memories he has from playing football for his dad and then being able to coach with his dad. The player-coach relationship was able to become a coach-coach relationship. I am sure that when we found out Nate was a boy, Tim was already planning for this to happen again. I think that each time we received the diagnosis, Tim's dream of his son's playing football for him became less and less of a reality.
I know that Tim loves his sons with all his heart and accepts them for who they are. I also know that his heart aches a bit when Nate and Noah don't pay attention when football is on tv. They also could never handle the noise and crowd at a Ram's football game. Nate and Noah are both built to play sports, but never will. I don't think the pain would be as great if they at least could understand the game. If they were capable, Tim would never force them to play or watch football, that would be their choice. Tim would support them in whatever sport or activity they were involved in. However, the fact that they don't even have a choice is what is so hard.
Luckily, Tim is having this relationship with Nick. Nick plays football on a team and Tim helps coach. Nick loves to play football, but struggles to sit and watch a full game. I hope that someday Nick cherishes all the memories he will have playing football for his dad the same way that Tim does. I will always be sorry that Tim will not have this with Nate and Noah.
I have never seen a father-son relationship like Tim and his dad's. The mutual love, respect, and admiration is so beautiful to see. Tim will always cherish the memories he has from playing football for his dad and then being able to coach with his dad. The player-coach relationship was able to become a coach-coach relationship. I am sure that when we found out Nate was a boy, Tim was already planning for this to happen again. I think that each time we received the diagnosis, Tim's dream of his son's playing football for him became less and less of a reality.
I know that Tim loves his sons with all his heart and accepts them for who they are. I also know that his heart aches a bit when Nate and Noah don't pay attention when football is on tv. They also could never handle the noise and crowd at a Ram's football game. Nate and Noah are both built to play sports, but never will. I don't think the pain would be as great if they at least could understand the game. If they were capable, Tim would never force them to play or watch football, that would be their choice. Tim would support them in whatever sport or activity they were involved in. However, the fact that they don't even have a choice is what is so hard.
Luckily, Tim is having this relationship with Nick. Nick plays football on a team and Tim helps coach. Nick loves to play football, but struggles to sit and watch a full game. I hope that someday Nick cherishes all the memories he will have playing football for his dad the same way that Tim does. I will always be sorry that Tim will not have this with Nate and Noah.
Wednesday, June 12, 2013
Nate's Wisdom Teeth
Going to the dentist is not easy....Nate has put Tim, the dentist, and two dental hygienists to the floor just because the dentist needed to look at his teeth. Every 2 years, the dentist sends Nate to Children's Hospital where they put him under general anesthesia so he can have his teeth cleaned and x- rayed. This past November came the words I was hoping to not hear..."Nate needs his wisdom teeth cut out this spring."
I called the oral surgeon who was recommended and tried to set up a consultation. The receptionist wouldn't listen to me and kept telling me to just bring in Nate and his x-rays and they would do it in the office. I couldn't get him to understand our dilemma. I called the scheduling person at the dentist's office and she called. Suddenly, the receptionist from the oral surgeon's office was telling me that it would be done at Children's Hospital and the surgeon would like a consultation appointment before hand.....I tried to tell him...
Nate and I met with the oral surgeon. He had two good throw downs before we got into the office. One was in the parking garage and the other in the lobby of the hospital....it wasn't Children's Hospital so we received many strange looks. Nate was VERY UNCOOPERATIVE during the appointment. The surgeon agreed that it would be unsafe for Nate to go home after having his teeth removed. His plan was to heavily sedate Nate, put in a breathing tube, and stick him in the ICU for a day or two.
It sounded like a good plan. However, the insurance company said no way. When the surgeon's office called to have it pre-approved, they kept saying he could go home. I called and was able to get it pushed through and approved. I actually told the lady on the phone that if they weren't going to allow Nate to stay in the hospital then the people who make this decision need to come to my house and help me care for him. She didn't like this very much. However, three days later, it was approved.
Last Friday morning, we arrived at the hospital at 6:15 am. Nate was the first surgery scheduled. Luckily, we had the same nurse that we had in November. She remembered Nate and that helped. Nate was fine until it was time to put on the gown. Tim had to suit up and go back into the operating room. He had to lay across Nate on the operating table so they could give him the gas through the mask. They could not put in the IV's until he was asleep.
The surgery went well and he was then taken to the PICU. They were very conservative with the medications and Nate started to wake up twice. This involved 6 to 8 people to hold him down and they had put on the arm restraints. The medication that worked best was the propofol, yes the one that Michael Jackson used. This medication required an hourly check in, so the machine beeped every hour.... I was allowed to sleep in the room....the alarm on the machine went off every hour.....
He slept all day Friday and through the night. The nurses moved him every two hours so he would not get bedsores. He had to be catherized twice so he would not get a bladder infection. While he was sleeping, the nurses were able to change the gauze in his mouth without being bitten or kicked. He did not pull out the stitches. The ice packs actually stayed on his face. None of this would have happened at home (dumb insurance company).
Because people under 18 can't be on the propofol for more than 24 hours, he had to be woken up Saturday morning. The doctor did a great job of making sure Nate was breathing on his own, but not fully awake, when they pulled out the tube. He called it "the art of medicine." When the tube came out, the only medicines were to calm him, not make him sleep. As soon as he woke up he started to get agitated. "It's time to go home!" He was required to stay in the hospital for 6 hours after he was woken up.
It was a long 6 hours. They did take out the IV's as soon as possible and he was able to put on his clothes. He must have told me "hospital is all done" or "home" a thousand times in those six hours. He also cried and was very agitated. We left the hospital around 4:00 Saturday afternoon. I was very humbled when the nurse told me that they rarely have patients leave the PICU walking out.
It was a rough 36 hours. However, Nate was the healthiest patient on the floor. He only had one doctor and one nurse, not a team. He also did not have goals listed on the white board outside his door. He was not in the PICU long enough for us to need to put up pictures or decorate the room. People did not have to gown up to see him. I did not need to call the family to the hospital to meet with his team of doctors which led to most of the family crying. Sure, the autism is rough, but he is healthy.
I called the oral surgeon who was recommended and tried to set up a consultation. The receptionist wouldn't listen to me and kept telling me to just bring in Nate and his x-rays and they would do it in the office. I couldn't get him to understand our dilemma. I called the scheduling person at the dentist's office and she called. Suddenly, the receptionist from the oral surgeon's office was telling me that it would be done at Children's Hospital and the surgeon would like a consultation appointment before hand.....I tried to tell him...
Nate and I met with the oral surgeon. He had two good throw downs before we got into the office. One was in the parking garage and the other in the lobby of the hospital....it wasn't Children's Hospital so we received many strange looks. Nate was VERY UNCOOPERATIVE during the appointment. The surgeon agreed that it would be unsafe for Nate to go home after having his teeth removed. His plan was to heavily sedate Nate, put in a breathing tube, and stick him in the ICU for a day or two.
It sounded like a good plan. However, the insurance company said no way. When the surgeon's office called to have it pre-approved, they kept saying he could go home. I called and was able to get it pushed through and approved. I actually told the lady on the phone that if they weren't going to allow Nate to stay in the hospital then the people who make this decision need to come to my house and help me care for him. She didn't like this very much. However, three days later, it was approved.
Last Friday morning, we arrived at the hospital at 6:15 am. Nate was the first surgery scheduled. Luckily, we had the same nurse that we had in November. She remembered Nate and that helped. Nate was fine until it was time to put on the gown. Tim had to suit up and go back into the operating room. He had to lay across Nate on the operating table so they could give him the gas through the mask. They could not put in the IV's until he was asleep.
The surgery went well and he was then taken to the PICU. They were very conservative with the medications and Nate started to wake up twice. This involved 6 to 8 people to hold him down and they had put on the arm restraints. The medication that worked best was the propofol, yes the one that Michael Jackson used. This medication required an hourly check in, so the machine beeped every hour.... I was allowed to sleep in the room....the alarm on the machine went off every hour.....
He slept all day Friday and through the night. The nurses moved him every two hours so he would not get bedsores. He had to be catherized twice so he would not get a bladder infection. While he was sleeping, the nurses were able to change the gauze in his mouth without being bitten or kicked. He did not pull out the stitches. The ice packs actually stayed on his face. None of this would have happened at home (dumb insurance company).
Because people under 18 can't be on the propofol for more than 24 hours, he had to be woken up Saturday morning. The doctor did a great job of making sure Nate was breathing on his own, but not fully awake, when they pulled out the tube. He called it "the art of medicine." When the tube came out, the only medicines were to calm him, not make him sleep. As soon as he woke up he started to get agitated. "It's time to go home!" He was required to stay in the hospital for 6 hours after he was woken up.
It was a long 6 hours. They did take out the IV's as soon as possible and he was able to put on his clothes. He must have told me "hospital is all done" or "home" a thousand times in those six hours. He also cried and was very agitated. We left the hospital around 4:00 Saturday afternoon. I was very humbled when the nurse told me that they rarely have patients leave the PICU walking out.
It was a rough 36 hours. However, Nate was the healthiest patient on the floor. He only had one doctor and one nurse, not a team. He also did not have goals listed on the white board outside his door. He was not in the PICU long enough for us to need to put up pictures or decorate the room. People did not have to gown up to see him. I did not need to call the family to the hospital to meet with his team of doctors which led to most of the family crying. Sure, the autism is rough, but he is healthy.
Saturday, May 11, 2013
What I want for Mother's Day...
I know what I want for Mother's Day. I don't want flowers, jewelry, or a new outfit. I want the autism to go away for one day.
I want Nate, Nick, and Noah to be typical kids....just for a day....every year on Mother's Day would be great. I would like to know what it's like to parent "typical" kids. I'm sure I could do it...it can't be harder than what I already know....
I want Nate and Noah to talk to me. Really talk to me...not reciting lines from their favorite episode of "Elmo's World" or Clifford". I want to tell them the story of how Tim and I met. I want to tell them how happy I was on my wedding day. I want to tell them how I loved each of them the moment I found out I was pregnant. I want to tell them how Tim was so afraid to hold them when they were first born...he said they were so small!
I want them to tell me if they're happy. I want them to tell me what they like and don't like. Does Nate like it when we call him "Naters?" Why doesn't Noah like macaroni and cheese? He's never even touched it. Do they know they are different? If so, does it bother them?
I want to be able to have a conversation with them about their futures. I want them to know that I have a plan. I want them to know that the decision for them to not live at home forever was difficult, but I believe it's for the best. I want them to know that they will always have each other (and Nick). I want them to know that I will never stop fighting for them.
I want Nate, Nick, and Noah to be typical kids....just for a day....every year on Mother's Day would be great. I would like to know what it's like to parent "typical" kids. I'm sure I could do it...it can't be harder than what I already know....
I want Nate and Noah to talk to me. Really talk to me...not reciting lines from their favorite episode of "Elmo's World" or Clifford". I want to tell them the story of how Tim and I met. I want to tell them how happy I was on my wedding day. I want to tell them how I loved each of them the moment I found out I was pregnant. I want to tell them how Tim was so afraid to hold them when they were first born...he said they were so small!
I want them to tell me if they're happy. I want them to tell me what they like and don't like. Does Nate like it when we call him "Naters?" Why doesn't Noah like macaroni and cheese? He's never even touched it. Do they know they are different? If so, does it bother them?
I want to be able to have a conversation with them about their futures. I want them to know that I have a plan. I want them to know that the decision for them to not live at home forever was difficult, but I believe it's for the best. I want them to know that they will always have each other (and Nick). I want them to know that I will never stop fighting for them.
Wednesday, May 1, 2013
Embrace it....Own it....
If your child is developmentally delayed, embrace it. Don't try to cover it up, accept it. After you accept it, own it. That is who he/she is. Now your job is to make sure that they get the best and most help they can.
If you have health insurance, call and ask about your home health benefits. With these benefits, the boys are receiving Speech Therapy and Occupational Therapy in home and without a co-pay. All it took was a prescription from the pediatrician. The office faxed it over to a company I found in our area and the therapy company took care of the rest. I found out about this when I called to ask about my benefits for the Autism Bill. I just happened to ask the customer service representative "what else do I have?" It may only provide with 20 visits a calendar year, but that's perfect for the 12 weeks of summer when they are only in school part time.
I also use our Department of Mental Health case manager. Every state has this is some form or another. Look up Department of Mental Health in your state. The wheels in the state machine move very slowly, but I have received help there. You just need to call now.....not in a few months.....There will be a lot of paperwork to fill out....I usually fill it out with a carton of ice cream and a spoon (no bowl needed). Just do it...you are a taxpayer...your kids deserve the benefits.
Find activities in your area for special kids. We are lucky to have one in St. Louis, TASK (Team Activities for Special Kids). They offer a variety of sporting and leisure activities. So does ARC (Association for Retarded Citizens)...I know they need a better name. Through these organizations, my boys play soccer, t-ball, bowling, kickball, attend cooking class, and attend overnight camp all with kids just like them. For once, they are not the minority. They are with their peers. Also, if your child attends a camp for typical kids, the camp may be required to provide staffing to help your child be successful. We found this through the Recreation Council. This enabled Nick to attend a camp when he was younger.
Also, look into the Americans With Disabilities Act. Because of this, my boys pay admission to many places, but their care giver does not. I remember the neurologist telling us to take the boys out, "They will gain something from every outing." This allows us to send them to places that charge admission, but helps financially by not paying for the staff member. I usually call ahead to places and when I mention ADA, they are more than happy to help us.
Finally, there is no shame in your child attending a school for special kids. It may seem scary at first, but they can be great places. Sending Nate and Noah to the self-contained school in our area is the best thing we ever did. They are in school with their peers. They do not stand out...everyone in that school is a special kid. They do great things. There comes a time when you need to decide what is more important, life skills or academic knowledge? Tim and I have always tried to be realistic about the boys. They don't need to know the Presidents of the United States, but they do need to be able to operate a microwave. In s special school, these life skills are very important and taught in a wide variety of ways. The boys are seeing kids that their lives will be intertwined with, whether it's at an outside activity or further down the road at a group living facility. We wanted to immerse them in their community.
I know it's a big job.....trust me I know. Don't worry, you are stronger than you know......and you can always find someone who has already walked down this road.
If you have health insurance, call and ask about your home health benefits. With these benefits, the boys are receiving Speech Therapy and Occupational Therapy in home and without a co-pay. All it took was a prescription from the pediatrician. The office faxed it over to a company I found in our area and the therapy company took care of the rest. I found out about this when I called to ask about my benefits for the Autism Bill. I just happened to ask the customer service representative "what else do I have?" It may only provide with 20 visits a calendar year, but that's perfect for the 12 weeks of summer when they are only in school part time.
I also use our Department of Mental Health case manager. Every state has this is some form or another. Look up Department of Mental Health in your state. The wheels in the state machine move very slowly, but I have received help there. You just need to call now.....not in a few months.....There will be a lot of paperwork to fill out....I usually fill it out with a carton of ice cream and a spoon (no bowl needed). Just do it...you are a taxpayer...your kids deserve the benefits.
Find activities in your area for special kids. We are lucky to have one in St. Louis, TASK (Team Activities for Special Kids). They offer a variety of sporting and leisure activities. So does ARC (Association for Retarded Citizens)...I know they need a better name. Through these organizations, my boys play soccer, t-ball, bowling, kickball, attend cooking class, and attend overnight camp all with kids just like them. For once, they are not the minority. They are with their peers. Also, if your child attends a camp for typical kids, the camp may be required to provide staffing to help your child be successful. We found this through the Recreation Council. This enabled Nick to attend a camp when he was younger.
Also, look into the Americans With Disabilities Act. Because of this, my boys pay admission to many places, but their care giver does not. I remember the neurologist telling us to take the boys out, "They will gain something from every outing." This allows us to send them to places that charge admission, but helps financially by not paying for the staff member. I usually call ahead to places and when I mention ADA, they are more than happy to help us.
Finally, there is no shame in your child attending a school for special kids. It may seem scary at first, but they can be great places. Sending Nate and Noah to the self-contained school in our area is the best thing we ever did. They are in school with their peers. They do not stand out...everyone in that school is a special kid. They do great things. There comes a time when you need to decide what is more important, life skills or academic knowledge? Tim and I have always tried to be realistic about the boys. They don't need to know the Presidents of the United States, but they do need to be able to operate a microwave. In s special school, these life skills are very important and taught in a wide variety of ways. The boys are seeing kids that their lives will be intertwined with, whether it's at an outside activity or further down the road at a group living facility. We wanted to immerse them in their community.
I know it's a big job.....trust me I know. Don't worry, you are stronger than you know......and you can always find someone who has already walked down this road.
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