The best Christmas gift is the Autism Bill. Somehow I managed to convince the insurance company to start coverage on Januaty 1, instead of October 1. This means big things for the Hill household. Nate and Noah each get ABA therapy covered for up to $40,000 a year, per child. At $25 an hour, this gives us 1600 hours per boy. With 52 weeks in a year, that's 30 hours a week for each boy. That's a lot of help.
Here's my plan:
Two people will be here Monday - Friday from 6:30 am to 8:30 am. They will work with Nate and Noah to get dressed, wash faces, brush teeth, make beds, eat breakfast, and clean up. These are skills that Tim and I don't have time to work on before we go to work. The people will also put the boys on the bus here at 8:20 instead of me taking them to the sitter's at 7:30. This gives them an extra 50 minutes to work on skills. This may also help Tim get to work on time, since he won't have to make sure the boys are dressed before he leaves.
Two people will also be here Sundays from 9:00 am to 1pm. Nick and Tim go to church every Sunday and I usually stay home with Nate and Noah. Depending on Noah's mood, I am sometimes tied to the house instead of getting the shopping done. I also haven't been to church in years since taking Nate and Noah is not relaxing for me or anyone around us. This will give Noah time to work on some academic skills such as body parts and counting items. Tim and I hope that Nate's person will be able to help him come to church and possibly attend Sunday school.
I also want a session on Saturday afternoons for both boys. They both attend gymnastics classes for special kids in the morning, but need some structure in the afternoon.
We all agree that the top priority for Noah is potty training, potty training, potty training. we always seem to take 1 step forward and 2 steps back. We are hoping that having more adults in the house will help. We also have a list of academic skills for him to work on. The preschool teacher told us last that year that his academic skills were on track, but we just don't see it. For example, he can rote count to 20, but can't count out 5 items.
We are looking to increase Nate's independence with daily living skills. He needs to develop his self care skills so he will not need help when he is older. We also want him to expand his leisure activities beyond Elmo and v-smile.
One of the best parts is that the company that is supplying the therapy is going to hire Vicki. This means that they will pay her, not me. They will also pay her much more than I can. This is good for both of us financially. Vicki will make more money and I will save a lot of money. I usually pay her $600 a month. During football and track seasons, this amount is much higher. This is on top of the money that I pay the sitter to get the boys on and off the bus.
Nate and Noah will now be very busy:
Monday-
ABA 6:30 to 8:30 am
OT 4:30 to 5:30
Speech 5:00 to 7:00
Tuesday-
ABA 6:30 to 8:30 am
Speech 5:00 to 7:00
Wednesday-
ABA 6:30 to 8:30 am
jumping at Skyzone 4:00 to 5:00
Thursday-
ABA 6:30 to 8:30 am
Speech- 4:30 to 5:30
Speech 5:00 to 7:00
Friday-
ABA 6:30 to 8:30 am
Saturday-
gymnastics 9 to 11
ABA 1:00 to 4:00 (I hope)
Sunday-
ABA- 9:00 am to 1:00 pm
This is when I wish we had an extra bedroom to turn into a therapy room........
Saturday, December 25, 2010
Monday, December 6, 2010
Noah's going to Southview........
Yipee!!!!!!
Noah's meeting went very well today. It was 2 hours, but this time, we were all on the same page. I sat down across the table from the Principal at Southview and said, "We can do this the easy way or the hard way." He replied by telling me that the data provided by Noah's teacher supports him going to Southview and he wasn't there to fight with me.
Boy, did they have data. When we looked at his IEP goals, he wasn't meeting them.....not even close. Usually goals are written to achieve the objective 80% of the time. There were goals that he was meeting the objective 0% of the time. 0%!!!! You don't have to be a math teacher to know that's not acceptable. I chose to just gloss over those 0 percents and focus on the main objective.....sending Noah to Southview.
We were also able to increase his Music Therapy from once a week to twice a week. Music Therapy is the only area that he is having any success and everyone agreed that more success would be good for him.
Tim and I are so happy! It's funny how we are acting like we just got both of our kids into Harvard. We just hope that Noah will have as much success at Southview as Nate. We were hoping that he could stay in the regular school for a few years, but it just wasn't working. It's not that the regular school was bad, he just needs more.
I wish I could see the future. I know this is a good move, but I am always wondering what else should we be doing? I won't rest until I know that we have exhausted every resource.
Noah's meeting went very well today. It was 2 hours, but this time, we were all on the same page. I sat down across the table from the Principal at Southview and said, "We can do this the easy way or the hard way." He replied by telling me that the data provided by Noah's teacher supports him going to Southview and he wasn't there to fight with me.
Boy, did they have data. When we looked at his IEP goals, he wasn't meeting them.....not even close. Usually goals are written to achieve the objective 80% of the time. There were goals that he was meeting the objective 0% of the time. 0%!!!! You don't have to be a math teacher to know that's not acceptable. I chose to just gloss over those 0 percents and focus on the main objective.....sending Noah to Southview.
We were also able to increase his Music Therapy from once a week to twice a week. Music Therapy is the only area that he is having any success and everyone agreed that more success would be good for him.
Tim and I are so happy! It's funny how we are acting like we just got both of our kids into Harvard. We just hope that Noah will have as much success at Southview as Nate. We were hoping that he could stay in the regular school for a few years, but it just wasn't working. It's not that the regular school was bad, he just needs more.
I wish I could see the future. I know this is a good move, but I am always wondering what else should we be doing? I won't rest until I know that we have exhausted every resource.
Sunday, November 28, 2010
I am thankful..........
Thanksgiving is a time to give thanks. While I am not thankful for autism, I am thankful for....
1. Dr. Mantovanni who diagnosed all 3 boys and took time to answer all our questions.
2. Beth- she was Nate's preschool teacher, ran Nick's home ABA, was Nick's preschool teacher, and ran Noah's home ABA. We always deferred to Beth, she knows her stuff.
3. Diane- Beth's partner who did most of Noah's home ABA. They share a mutual adoration.
4. Margaret- the OT at preschool. All 3 boys had her and they eat many more foods because of her.
5. Erkia- she was Nate's aide in kindergarten and started working with us in the house 7 years ago.
6. Vicki- Erika's sister. She came to us in 2004 and we couldn't function without her.
7. Special School District- we live in a county that pools all their SSD money to provide more services for kids.
8. Southview School- Nate's new school. It's such a great place, we can't wait to get Noah there.
9. Maria- our babysitter for years. She allowed therapists into her home when the boys were little, learned how to sign, went to the ABA training classes, and just loves my boys.
10. Mikaela- the OT who now comes to the house twice a week. She is doing yoga with Nate to improve his body awareness and he loves it.
11. Ruth- the new SLP who now comes to the house three times a week. She has an ABA background and can work with Noah for a full hour.
12. Tim's insurance- through the home health care the boys receive 60 OT visits and UNLIMITED speech visits per year with no copay.
13. The Autism Bill- we will receive ABA in home up to $40,000 per year per boy.
14. Risperdal- it's a medication that all 3 boys take.
15. My friends- they are always willing to listen or help me take the boys places. They also don't judge me or my parenting by some of the boy's behaviors.
16. Our families- they love my boys no matter what.
1. Dr. Mantovanni who diagnosed all 3 boys and took time to answer all our questions.
2. Beth- she was Nate's preschool teacher, ran Nick's home ABA, was Nick's preschool teacher, and ran Noah's home ABA. We always deferred to Beth, she knows her stuff.
3. Diane- Beth's partner who did most of Noah's home ABA. They share a mutual adoration.
4. Margaret- the OT at preschool. All 3 boys had her and they eat many more foods because of her.
5. Erkia- she was Nate's aide in kindergarten and started working with us in the house 7 years ago.
6. Vicki- Erika's sister. She came to us in 2004 and we couldn't function without her.
7. Special School District- we live in a county that pools all their SSD money to provide more services for kids.
8. Southview School- Nate's new school. It's such a great place, we can't wait to get Noah there.
9. Maria- our babysitter for years. She allowed therapists into her home when the boys were little, learned how to sign, went to the ABA training classes, and just loves my boys.
10. Mikaela- the OT who now comes to the house twice a week. She is doing yoga with Nate to improve his body awareness and he loves it.
11. Ruth- the new SLP who now comes to the house three times a week. She has an ABA background and can work with Noah for a full hour.
12. Tim's insurance- through the home health care the boys receive 60 OT visits and UNLIMITED speech visits per year with no copay.
13. The Autism Bill- we will receive ABA in home up to $40,000 per year per boy.
14. Risperdal- it's a medication that all 3 boys take.
15. My friends- they are always willing to listen or help me take the boys places. They also don't judge me or my parenting by some of the boy's behaviors.
16. Our families- they love my boys no matter what.
Tuesday, November 2, 2010
the honeymoon's over.....
We had a meeting with Noah's teachers 3 weeks ago. It wasn't a full IEP, but Tim and I just wanted to check in to see how things were going. Apparently, not too well.......
The only time he could sit for any length of time was during Music Therapy. So, of course, I'm like "let's increase music therapy to twice a week." The Speech Therapist couldn't give me any infor mation because she can't get him to sit and participate in speech. Now, who would think Noah could handle speech in a group of 5 kids? The OT pretty much said the same thing. We decided to start an Adaptive PE evaluation and hold another meeting to rewrite some of his goals to be more academic.
This past Friday, I got an email from his teacher. He was having more and more difficulty following directions. Any time a demand was being placed on him, he would drop to the floor, kick, bite, and scream "outside!" He wanted to go outside to swing. She said that at times the fits would last 30 minutes. Now, the strange thing is that he's been good at home. I guess he was so tired after his day at school that he just didn't have another fit in him.
So, Tim and I decided it was time to send Noah to Southview (the special school Nate attends). I called to get the ball rolling and told them that I would like him to start at the new school the Monday after Thanksgiving. we were really hoping to put this off a while like we were able to with Nate. Unfortunately, Noah's behavior is so explosive. We feel that the staff will be better able to come up with a plan for him. We have seen how much Nate has flourished and hope Noah will too.
I hope all you parents with typical children know how lucky you are.
The only time he could sit for any length of time was during Music Therapy. So, of course, I'm like "let's increase music therapy to twice a week." The Speech Therapist couldn't give me any infor mation because she can't get him to sit and participate in speech. Now, who would think Noah could handle speech in a group of 5 kids? The OT pretty much said the same thing. We decided to start an Adaptive PE evaluation and hold another meeting to rewrite some of his goals to be more academic.
This past Friday, I got an email from his teacher. He was having more and more difficulty following directions. Any time a demand was being placed on him, he would drop to the floor, kick, bite, and scream "outside!" He wanted to go outside to swing. She said that at times the fits would last 30 minutes. Now, the strange thing is that he's been good at home. I guess he was so tired after his day at school that he just didn't have another fit in him.
So, Tim and I decided it was time to send Noah to Southview (the special school Nate attends). I called to get the ball rolling and told them that I would like him to start at the new school the Monday after Thanksgiving. we were really hoping to put this off a while like we were able to with Nate. Unfortunately, Noah's behavior is so explosive. We feel that the staff will be better able to come up with a plan for him. We have seen how much Nate has flourished and hope Noah will too.
I hope all you parents with typical children know how lucky you are.
Saturday, October 9, 2010
This is one thing I didn't think of until last night
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?
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?
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?????
Monday, August 9, 2010
Nate's new school
I am so excited!!! Next Monday, Nate will start at his new school. It's called Southview and all of the students are special needs. He will FINALLY look like everyone else in class. For once, he won't be the one that's different.
This decision was a long time coming. Since Tim and I both teach middle school, we agreed years ago that Nate would not go to middle school. It was very hard for Tim to agree that Nate should not attend school in the building where he teaches, but we know what is best for Nate. I started the ball rolling on this last summer before Nate started 5th grade. We started the meeting on this in March.
Getting him in was not an easy task. First there's the packet.....40 pages that the current teacher and parent fill out together. My friends also helped me write an essay about Nate and why he belongs in the special school. We had 3 meetings. In the first meeting a representative from Southview and a representative from Tim's school attended. Their purpose was to determine if the regular school could academically offer Nate everything that the special school could. It was long and difficult. At one time I just looked at the guy from the special school and said, "Just take him. Take him now, because if you tell me no I won't quit. I will keep requesting this until you give in." The fact that Tim and I teach middle school worked in our favor because we know how things operate.
The second meeting involved a tour of the special school. When we walked in there was a boy in the office flapping his hands like Nate does. I also saw a teenage boy walking down the hall holding hands with his aide. Finally........kids that looked like Nate! They also had adult size playground equipment and a store where Nate can practice money and buy snacks. Since Nate still needs help in the bathroom, it won't be a big deal if an adult goes in with him. There were Elmo books in the library.....that's right up Nate's alley. After touring the school, there was no way in hell they were telling me no.
The final decision was finally made at the third meeting. The decision was made very quickly and was supported by all of the adults who serviced Nate over the years. There were tears from his adaptive pe teacher who has had him since kindergarten. She agreed that sometimes the "least restrictive environment" isn't always what is best. We then wrote the new IEP. I was surprised how the goals went from being educational based to being life skill based. That's what I have wanted all along. I have always said that I am not concerned about now, but about 10 years from now.
It was a long and hard fight. I wish it didn't have to be. I fight so much that I just wish something could be easy......just once.....
This decision was a long time coming. Since Tim and I both teach middle school, we agreed years ago that Nate would not go to middle school. It was very hard for Tim to agree that Nate should not attend school in the building where he teaches, but we know what is best for Nate. I started the ball rolling on this last summer before Nate started 5th grade. We started the meeting on this in March.
Getting him in was not an easy task. First there's the packet.....40 pages that the current teacher and parent fill out together. My friends also helped me write an essay about Nate and why he belongs in the special school. We had 3 meetings. In the first meeting a representative from Southview and a representative from Tim's school attended. Their purpose was to determine if the regular school could academically offer Nate everything that the special school could. It was long and difficult. At one time I just looked at the guy from the special school and said, "Just take him. Take him now, because if you tell me no I won't quit. I will keep requesting this until you give in." The fact that Tim and I teach middle school worked in our favor because we know how things operate.
The second meeting involved a tour of the special school. When we walked in there was a boy in the office flapping his hands like Nate does. I also saw a teenage boy walking down the hall holding hands with his aide. Finally........kids that looked like Nate! They also had adult size playground equipment and a store where Nate can practice money and buy snacks. Since Nate still needs help in the bathroom, it won't be a big deal if an adult goes in with him. There were Elmo books in the library.....that's right up Nate's alley. After touring the school, there was no way in hell they were telling me no.
The final decision was finally made at the third meeting. The decision was made very quickly and was supported by all of the adults who serviced Nate over the years. There were tears from his adaptive pe teacher who has had him since kindergarten. She agreed that sometimes the "least restrictive environment" isn't always what is best. We then wrote the new IEP. I was surprised how the goals went from being educational based to being life skill based. That's what I have wanted all along. I have always said that I am not concerned about now, but about 10 years from now.
It was a long and hard fight. I wish it didn't have to be. I fight so much that I just wish something could be easy......just once.....
Friday, August 6, 2010
nate and the toilet
Nate is a visual stimmer. In other words, he likes to watch things move. When he was little he used to put his face up against the tv and watch the ticker tape along the bottom of the screen. A ceiling fan would keep him facinated for hours. He also used to continuously flush the toilet and watch the water spin and go down. It took a long time to get him to quit putting his face in the toilet to watch the water.
One night, years later, we were at Chevy's having dinner. One of the many bad things about Nate not talking, is you don't know when he doesn't feel well. So, without warning, Nate threw up all over the table......and again on himself....and again all over the floor. I jumped up and took Nate into the women's restroom while Tim got the check and Vicki took Nick and Noah to the car.
I got Nate into the bathroom and tried to get Nate to throw up in the toilet instead of all over the floor. Now, mind you, we have been teaching Nate FOR YEARS not to put his face in the toilet. What was I trying to do now?????? Have him put his face in the toilet. He was sooooooo confused. Even though he couldn't speak, the look on his face was priceless and he clearly thought I was crazy. I never did get him to throw up in the toilet. I owed the staff at Chevy's a huge apology.
When he stopped getting sick, I decided it was time to go to the car. To get to the car, we had to walk through the mall. Now, Nate and I are covered in vomit. He does not like the feel of this and starts to take off his clothes. Nate was 8 years old. Everyone knows that an 8 year old is too old to be stripping in the mall. So, here I am trying to reason with a child that can't be reasoned with and I hear the words, "Hi, Mrs. Hill!" Oh yes, a student and her parent............
I tell all my students about my kids in the beginning of the school year so that if we see them in public they are aware of the autism and won't be surprised if the boys react strangely.
I don't think any discussion about my boys would prepare anyone for what my student saw: Nate and I walking through the mall, covered in vomit, and Nate trying to remove his clothes.
I still laugh when I remember the look on Nate's face as I was trying to get him to throw up in the toilet.........he has since learned how.
One night, years later, we were at Chevy's having dinner. One of the many bad things about Nate not talking, is you don't know when he doesn't feel well. So, without warning, Nate threw up all over the table......and again on himself....and again all over the floor. I jumped up and took Nate into the women's restroom while Tim got the check and Vicki took Nick and Noah to the car.
I got Nate into the bathroom and tried to get Nate to throw up in the toilet instead of all over the floor. Now, mind you, we have been teaching Nate FOR YEARS not to put his face in the toilet. What was I trying to do now?????? Have him put his face in the toilet. He was sooooooo confused. Even though he couldn't speak, the look on his face was priceless and he clearly thought I was crazy. I never did get him to throw up in the toilet. I owed the staff at Chevy's a huge apology.
When he stopped getting sick, I decided it was time to go to the car. To get to the car, we had to walk through the mall. Now, Nate and I are covered in vomit. He does not like the feel of this and starts to take off his clothes. Nate was 8 years old. Everyone knows that an 8 year old is too old to be stripping in the mall. So, here I am trying to reason with a child that can't be reasoned with and I hear the words, "Hi, Mrs. Hill!" Oh yes, a student and her parent............
I tell all my students about my kids in the beginning of the school year so that if we see them in public they are aware of the autism and won't be surprised if the boys react strangely.
I don't think any discussion about my boys would prepare anyone for what my student saw: Nate and I walking through the mall, covered in vomit, and Nate trying to remove his clothes.
I still laugh when I remember the look on Nate's face as I was trying to get him to throw up in the toilet.........he has since learned how.
Thursday, August 5, 2010
you're shitting me
I did not plan to have a third child. After getting Nick's diagnosis, I was finished. I couldn't do it again.
I went in to get my tubes tied on December 31, 2003. Tim and I figured this would be a good time to do it since we don't go out on New Year's Eve and I would still have time to recover before school started. Nate and Nick spent the night before at my mom's since I had to be at the surgery center by 5am.
I was very nervous. I had never had surgery before, so I was nervously chatting with the nurse as I got in my gown and she checked my vitals. Tim was out in the waiting room while all this was going on. I was telling the nurse about the boys and I told her I couldn't do it again. I couldn't sit in the neurologist's office again and then turn my house upside down with therapy. The words, "If I found out I was pregnant right now, I'd kill myself," actually came out of my mouth. The nurse had me pee in a cup. I didn't think anything of it. I figured they were checking my sugar levels since I hadn't eaten since midnight.
Boy was I wrong........
I was lying on the gurney with the iv in my arm and waiting for the anesthesiologist to come in to talk to me. The nurse came in and told me that we weren't doing the surgery. I asked her if he was late, maybe doing an emergency surgery, and told her that the boys were with my mom and I had to get finished as quick as possible. She interrupted me to tell me that the reason we weren't doing the surgery was because I was pregnant.
"You're shitting me!", I said and started to cry and cry.....and cry. I believe that if we were in a hospital they would have put me on a 36 hour hold. Boy, did that nurse have a story to tell that night.
It took me a few weeks to get used to the idea of being pregnant. While my friends were very supportive, my family was not. I hope that they were just worried about the extra stress in my life. The doctor sent us to a genetic specialist to see if they could tell us anything about the possibility of having a third autistic child. They weren't any help. All we could do was wait and see.............
I went in to get my tubes tied on December 31, 2003. Tim and I figured this would be a good time to do it since we don't go out on New Year's Eve and I would still have time to recover before school started. Nate and Nick spent the night before at my mom's since I had to be at the surgery center by 5am.
I was very nervous. I had never had surgery before, so I was nervously chatting with the nurse as I got in my gown and she checked my vitals. Tim was out in the waiting room while all this was going on. I was telling the nurse about the boys and I told her I couldn't do it again. I couldn't sit in the neurologist's office again and then turn my house upside down with therapy. The words, "If I found out I was pregnant right now, I'd kill myself," actually came out of my mouth. The nurse had me pee in a cup. I didn't think anything of it. I figured they were checking my sugar levels since I hadn't eaten since midnight.
Boy was I wrong........
I was lying on the gurney with the iv in my arm and waiting for the anesthesiologist to come in to talk to me. The nurse came in and told me that we weren't doing the surgery. I asked her if he was late, maybe doing an emergency surgery, and told her that the boys were with my mom and I had to get finished as quick as possible. She interrupted me to tell me that the reason we weren't doing the surgery was because I was pregnant.
"You're shitting me!", I said and started to cry and cry.....and cry. I believe that if we were in a hospital they would have put me on a 36 hour hold. Boy, did that nurse have a story to tell that night.
It took me a few weeks to get used to the idea of being pregnant. While my friends were very supportive, my family was not. I hope that they were just worried about the extra stress in my life. The doctor sent us to a genetic specialist to see if they could tell us anything about the possibility of having a third autistic child. They weren't any help. All we could do was wait and see.............
Monday, August 2, 2010
I'm done
Today the score is autism 1, Mommy 0.
We have been having toileting issues with Noah for some time. If he is naked, he is potty trained. If he is not naked, he is not potty trained. That's not even the big issue.......
When he poops on the potty he does not push the poop out. Instead he uses finger to dig the poop out.....I know, I know GROSS! UGH!!!! Well. now he is bleeding from so much digging.......
So I called the pediatrician. The bleeding will stop and the tear will heal. I called the psychiatrist. How do I handle this behaviorally without ruining him for the rest of his life???????
She said to continue potty training, but he is not to be unattended. OK that's realistic. We need to reshape his bathroom routine and get him to wear clothes.
I broke down and made the call for professional help. Hopefully, someone can come out to the house soon. I need someone in the house every day from 4 to 7 to help with dinner, bath, and bedtime. He/she can devote their 100% attention on Noah (which I can't possibly do). I just got off the phone with the insurance company. Until the Autism Bill goes into effect on Jan 1, 2011, any behavioral help is not covered.
Tim even said today that it would be nice to have the autism go away for a few weeks so we could potty train Noah and then it could come back. I think we both feel defeated.
I need the autism to go away. I wish I could put it in a box up on a shelf for a little while. I know it won't go away forever, but just one day off would be nice.
We have been having toileting issues with Noah for some time. If he is naked, he is potty trained. If he is not naked, he is not potty trained. That's not even the big issue.......
When he poops on the potty he does not push the poop out. Instead he uses finger to dig the poop out.....I know, I know GROSS! UGH!!!! Well. now he is bleeding from so much digging.......
So I called the pediatrician. The bleeding will stop and the tear will heal. I called the psychiatrist. How do I handle this behaviorally without ruining him for the rest of his life???????
She said to continue potty training, but he is not to be unattended. OK that's realistic. We need to reshape his bathroom routine and get him to wear clothes.
I broke down and made the call for professional help. Hopefully, someone can come out to the house soon. I need someone in the house every day from 4 to 7 to help with dinner, bath, and bedtime. He/she can devote their 100% attention on Noah (which I can't possibly do). I just got off the phone with the insurance company. Until the Autism Bill goes into effect on Jan 1, 2011, any behavioral help is not covered.
Tim even said today that it would be nice to have the autism go away for a few weeks so we could potty train Noah and then it could come back. I think we both feel defeated.
I need the autism to go away. I wish I could put it in a box up on a shelf for a little while. I know it won't go away forever, but just one day off would be nice.
Friday, July 30, 2010
haircuts
Tim's family gets together every Sunday. His brother's family, his sister, and our family meet at Tim's parent's house to eat and spend the day together. His mom and dad love having the whole family over except on .....haircut day.
I think my kids perceive haircuts as painful. Even just trying to take a snip here or there with the scissors ilicits a very strong reaction......I often liken it to "open-heart surgery without anesthesia." Tim wouldn't even mention haircuts until after we had eaten and everyone was relaxed.
It took 7 people to cut one child's hair. I know, that sounds crazy! Tim's dad would sit in a chair in the middle of the kitchen. He would put either Nate or Nick on his lap, facing him. He would bear hug the boy. Phil (Tim's older brother), Dawn (Tim's older sister), and I would try to hold them still by grabbing flailing arms and legs. Tim would man the clippers. The crying and screaming would begin. We were all covered in hair, tears, spit, and sometimes vomit, and the cuts weren't always even. Tim's mom and sister-in-law would wait upstairs. Their job was to shower the boys as soon as they were finished and also offer some comfort. By the time we were finished, most of the adults were also crying. It broke their hearts to do something so upsetting to the boys.
These were Sundays that I envied my friends that had the cute pictures of their child getting a haircut in the salon. This is another ritual that so many people take for granted while we dreaded them.
We have now graduated to haircuts at home. The only one who needs to be held is Noah. I can still handle him, but not much longer. Nate and Nick do a great job with tolerating the haircut.
We've come a long way.............
I think my kids perceive haircuts as painful. Even just trying to take a snip here or there with the scissors ilicits a very strong reaction......I often liken it to "open-heart surgery without anesthesia." Tim wouldn't even mention haircuts until after we had eaten and everyone was relaxed.
It took 7 people to cut one child's hair. I know, that sounds crazy! Tim's dad would sit in a chair in the middle of the kitchen. He would put either Nate or Nick on his lap, facing him. He would bear hug the boy. Phil (Tim's older brother), Dawn (Tim's older sister), and I would try to hold them still by grabbing flailing arms and legs. Tim would man the clippers. The crying and screaming would begin. We were all covered in hair, tears, spit, and sometimes vomit, and the cuts weren't always even. Tim's mom and sister-in-law would wait upstairs. Their job was to shower the boys as soon as they were finished and also offer some comfort. By the time we were finished, most of the adults were also crying. It broke their hearts to do something so upsetting to the boys.
These were Sundays that I envied my friends that had the cute pictures of their child getting a haircut in the salon. This is another ritual that so many people take for granted while we dreaded them.
We have now graduated to haircuts at home. The only one who needs to be held is Noah. I can still handle him, but not much longer. Nate and Nick do a great job with tolerating the haircut.
We've come a long way.............
Friday, July 23, 2010
nick
I feel sorry for Nick. I know that sounds strange, and I'll tell you why.
First, Nick is very high functioning. He has not required an aide for a few years and spends all his day in the regular classroom. He repeated second grade which has done wonders. Anyway, I think he realizes that he is different. Nate and Noah don't know that they are different (at least I tell myself). I really think Nick does. His social interactions are just not par with his peers. He still paces at recess instead of trying to play with others. His rigidity won't allow him to play with kids that he perceives as "rule breakers" whether they are or not.
Secondly, he has no one to play with or talk to at home. He gets nothing from his brothers. They don't talk to him and can't play with him. Tim and I are the only interaction he gets at home.
Third, he has already started trying to care for his brothers. He worries about them constantly. Tim and I have done everything we can think of to convince him that his brothers are not his job. Unfortunately, that day will come.
I feel so guilty that we will be leaving this burden with Nick. Someday he will be responsible for his brothers. He will have to deal with the assisted living and the money situations. He will have to take care of their medical needs. He will never be able to move far away. I hope he will be able to marry someone who will not grow to resent his brothers. This is not the legacy I wanted to leave my child.
First, Nick is very high functioning. He has not required an aide for a few years and spends all his day in the regular classroom. He repeated second grade which has done wonders. Anyway, I think he realizes that he is different. Nate and Noah don't know that they are different (at least I tell myself). I really think Nick does. His social interactions are just not par with his peers. He still paces at recess instead of trying to play with others. His rigidity won't allow him to play with kids that he perceives as "rule breakers" whether they are or not.
Secondly, he has no one to play with or talk to at home. He gets nothing from his brothers. They don't talk to him and can't play with him. Tim and I are the only interaction he gets at home.
Third, he has already started trying to care for his brothers. He worries about them constantly. Tim and I have done everything we can think of to convince him that his brothers are not his job. Unfortunately, that day will come.
I feel so guilty that we will be leaving this burden with Nick. Someday he will be responsible for his brothers. He will have to deal with the assisted living and the money situations. He will have to take care of their medical needs. He will never be able to move far away. I hope he will be able to marry someone who will not grow to resent his brothers. This is not the legacy I wanted to leave my child.
good help
Even though I felt like I was being royally screwed, some great people have come into our lives. I have been very lucky to have good people in my house, helping me with the boys.
These gals have been through a lot. They were all trained in ABA and learned how to sign. They have been kicked, hit, and cleaned up poop. They have also been vomited on when non-preferred foods are served for dinner. But, they have fallen in love with my boys. They have celebrated every accomplishment and lamented every setback as if they were their own children. I know that while they were working on speech sounds, they were also trying to get the boys to say their names.
The girls have been in my house 20 to 30 hours a week. Another set of hands allows me to take the boys out to the store or to a restaurant. I remember the neurologist telling us to take Nate everywhere because he would always learn something. Every outing, no matter how quick, was important.
I remember being in Target with the boys and some help. I left her and the boys in the snack area with a bag of popcorn and drinks while I ran through the store. As I was walking out of the snack area I heard a woman comment on how it must be nice to have the money to have a nanny. I was so tempted to turn and ask her if she wanted to trade. Having the girls with me is not a luxury, it is a necessity.
Am I sad that there are days that the boys are more excited to see one of the girls than they are to see me? No. My boys are lucky in one way....instead of just having a mommy and daddy, my guys have a much larger immediate family. I also believe that these girls are better people for knowing my boys.
These gals have been through a lot. They were all trained in ABA and learned how to sign. They have been kicked, hit, and cleaned up poop. They have also been vomited on when non-preferred foods are served for dinner. But, they have fallen in love with my boys. They have celebrated every accomplishment and lamented every setback as if they were their own children. I know that while they were working on speech sounds, they were also trying to get the boys to say their names.
The girls have been in my house 20 to 30 hours a week. Another set of hands allows me to take the boys out to the store or to a restaurant. I remember the neurologist telling us to take Nate everywhere because he would always learn something. Every outing, no matter how quick, was important.
I remember being in Target with the boys and some help. I left her and the boys in the snack area with a bag of popcorn and drinks while I ran through the store. As I was walking out of the snack area I heard a woman comment on how it must be nice to have the money to have a nanny. I was so tempted to turn and ask her if she wanted to trade. Having the girls with me is not a luxury, it is a necessity.
Am I sad that there are days that the boys are more excited to see one of the girls than they are to see me? No. My boys are lucky in one way....instead of just having a mommy and daddy, my guys have a much larger immediate family. I also believe that these girls are better people for knowing my boys.
Tuesday, July 20, 2010
the autismobile
I finally met someone who actually understood what I was going through. Her name was Jen and she had two boys that were the same age as my boys and they also had autism. They only lived about 4 blocks from us and her kids attend the same schools as mine. Finally, an ally!
Friday nights were always difficult because both of our husbands weren't home and the kids were worn out from a full week of school and therapy. Since the boys liked riding in the car, we decided to take them for a ride.
We would put all the boys in their pajamas and pack meds. We would pick them up around 5:00 and drive thru a McDonald's and let the boys eat in the van. We would then drive thru somewhere else for Jen and I and just drive.
It was a great time. The boys were seat belted in and happy with their chicken nuggets and fries. Even though they didn't speak to each other, we believed that they liked being around their friends. We drove and drove and drove. Jen and I could talk and not worry that one of the boys was getting into something. They were happy and we were happy. Jen and I were able to vent, cry, or just sing along to the radio. It was very relaxing and therapeutic.
The drive usually lasted 3 hours and always entailed a bathroom stop at a grocery store. Nate lost his first tooth on one of those drives. Jen and I gave the boys their meds so all we had to do was put them in bed when we got home.
It was a ritual that I looked forward to each Friday night. Jen and her boys have moved, so the ritual ended. I still take my boys in the car for a drive when they are having a rough day, but it's not the same. I miss the feeling of camaraderie I shared with someone else who was living it every day like me. I miss the autismobile.
Friday nights were always difficult because both of our husbands weren't home and the kids were worn out from a full week of school and therapy. Since the boys liked riding in the car, we decided to take them for a ride.
We would put all the boys in their pajamas and pack meds. We would pick them up around 5:00 and drive thru a McDonald's and let the boys eat in the van. We would then drive thru somewhere else for Jen and I and just drive.
It was a great time. The boys were seat belted in and happy with their chicken nuggets and fries. Even though they didn't speak to each other, we believed that they liked being around their friends. We drove and drove and drove. Jen and I could talk and not worry that one of the boys was getting into something. They were happy and we were happy. Jen and I were able to vent, cry, or just sing along to the radio. It was very relaxing and therapeutic.
The drive usually lasted 3 hours and always entailed a bathroom stop at a grocery store. Nate lost his first tooth on one of those drives. Jen and I gave the boys their meds so all we had to do was put them in bed when we got home.
It was a ritual that I looked forward to each Friday night. Jen and her boys have moved, so the ritual ended. I still take my boys in the car for a drive when they are having a rough day, but it's not the same. I miss the feeling of camaraderie I shared with someone else who was living it every day like me. I miss the autismobile.
Thursday, July 15, 2010
not again...
The good news is that when I mentioned to Tim that we needed to take Nick to the neurologist, he didn't argue with me. The bad news is that Nick needed to go to the neurologist.
At 12 months he was not pointing, clapping, or responding to his name. So, we got the diagonosis and called Nate's case manager with First Steps. He was not as delayed as Nate, but still qualified. We rounded up the troops again and got started. The benefit was we started with Nick at 18 months instead of 24 months with Nate. We also were able to get the same therapists that worked with Nate.
I was angry again. Why another one?????? We were told that since we had one child with autism, we were 50% more likely to have another child with autism. That really does not seem fair. I mean really.......one special needs child per family is not enough? Our lives were filled with nothing but therapy. We now had a "therapy room." I didn't want one. I wanted boys who talked and played with toys instead of spinning objects and flapping. I wanted my parenting to be about Happy Meals and Disneyland.
I went through a period when I could not stand to be around typical children. It hurt too much to see what I didn't have. I also noticed how some parents were always trying to "one up" another with what their child could do. It was agonizing to listen to. I still have a hard time reading the "Christmas letters" that come in the mail. My kid's accomplishments seem so insignificant when compared to some of the other "select teams" and fabulous vacations.
At 12 months he was not pointing, clapping, or responding to his name. So, we got the diagonosis and called Nate's case manager with First Steps. He was not as delayed as Nate, but still qualified. We rounded up the troops again and got started. The benefit was we started with Nick at 18 months instead of 24 months with Nate. We also were able to get the same therapists that worked with Nate.
I was angry again. Why another one?????? We were told that since we had one child with autism, we were 50% more likely to have another child with autism. That really does not seem fair. I mean really.......one special needs child per family is not enough? Our lives were filled with nothing but therapy. We now had a "therapy room." I didn't want one. I wanted boys who talked and played with toys instead of spinning objects and flapping. I wanted my parenting to be about Happy Meals and Disneyland.
I went through a period when I could not stand to be around typical children. It hurt too much to see what I didn't have. I also noticed how some parents were always trying to "one up" another with what their child could do. It was agonizing to listen to. I still have a hard time reading the "Christmas letters" that come in the mail. My kid's accomplishments seem so insignificant when compared to some of the other "select teams" and fabulous vacations.
If another person told me, "God only gives you what you can handle", I think I would have shot someone.
Monday, July 12, 2010
the little yellow bus
If you live in St. Louis County and have a special needs child, they begin their education on their 3rd birthday. The little yellow bus comes and takes them to school.
When Nate was 2 years 6 months, we started the transition into Special School District (SSD). My case manager through First Steps was a great help. First, I had to take Nate in for a screening to see if he qualified. I don't think he had any skills beyond 15 months. Then we had our first IEP meeting......out first of many. He qualified for all services...speech, OT, PT, and ABA. He needed so many services that he had to go full day just to have time to do everything.
On Feb. 16, 2001, the little bus came to pick Nate up. They didn't have car seats on the bus, but harnesses for the little ones. I stayed at the sitter's to help get him on the first day. Oh he screamed!
Then, I did something stupid..........I followed the bus all the way to school. I could hear him screaming each time they opened the door to pick up another student. Nate was crying, I was crying, and my mom was crying (on her cell phone with me). I felt like a horrible and mean parent putting my baby through this.
His first month of school was rough. He used to fall asleep on the bus on the way home since he didn't have time to nap with all his therapy. He was so strung out that all he did at home was spin Tupperware lids.
It did get better. After a week, he no longer cried getting on the bus. He also slept well at night since he worked so hard during the day.
Nick turned 1 in April of 2001. He was not pointing, clapping, or waving. He also did not turn his head when I called his name. Could it really happen twice????? I made another appointment with the neurologist..........
When Nate was 2 years 6 months, we started the transition into Special School District (SSD). My case manager through First Steps was a great help. First, I had to take Nate in for a screening to see if he qualified. I don't think he had any skills beyond 15 months. Then we had our first IEP meeting......out first of many. He qualified for all services...speech, OT, PT, and ABA. He needed so many services that he had to go full day just to have time to do everything.
On Feb. 16, 2001, the little bus came to pick Nate up. They didn't have car seats on the bus, but harnesses for the little ones. I stayed at the sitter's to help get him on the first day. Oh he screamed!
Then, I did something stupid..........I followed the bus all the way to school. I could hear him screaming each time they opened the door to pick up another student. Nate was crying, I was crying, and my mom was crying (on her cell phone with me). I felt like a horrible and mean parent putting my baby through this.
His first month of school was rough. He used to fall asleep on the bus on the way home since he didn't have time to nap with all his therapy. He was so strung out that all he did at home was spin Tupperware lids.
It did get better. After a week, he no longer cried getting on the bus. He also slept well at night since he worked so hard during the day.
Nick turned 1 in April of 2001. He was not pointing, clapping, or waving. He also did not turn his head when I called his name. Could it really happen twice????? I made another appointment with the neurologist..........
Saturday, July 10, 2010
some quirks
Here are a few "quirks" we've had to deal with:
1. Nate would not ride in an elevator until he was 7. It sucked because the neurologist's office was on the 9th floor.
2. Nick was very afraid of the automatic flushers in public restrooms.
3. The electric hand dryers in public restrooms scare Nate and Noah.
4. Noah almost vomits at the sight of noodles......I have a kid who won't eat mac n cheese or spaghetti.
5. Nate will not drink anything that has ice in it. He also won't eat ice cream :(
6. Noah STILL is not potty trained. His swim diapers are SCREAMING at the seams!
7. Nate would freak out when we pumped gas. That elicited many strange looks at the gas stations.
8. Any dental work must be done under anesthesia. This includes x-rays and cleanings.
9. Poop spread through the house is just WRONG. When Noah comes to me and says "don't touch the poopies", I am filled with terror.
10. All 3 boys can put the doctor, two nurses, and Tim to the floor during a routine exam.
1. Nate would not ride in an elevator until he was 7. It sucked because the neurologist's office was on the 9th floor.
2. Nick was very afraid of the automatic flushers in public restrooms.
3. The electric hand dryers in public restrooms scare Nate and Noah.
4. Noah almost vomits at the sight of noodles......I have a kid who won't eat mac n cheese or spaghetti.
5. Nate will not drink anything that has ice in it. He also won't eat ice cream :(
6. Noah STILL is not potty trained. His swim diapers are SCREAMING at the seams!
7. Nate would freak out when we pumped gas. That elicited many strange looks at the gas stations.
8. Any dental work must be done under anesthesia. This includes x-rays and cleanings.
9. Poop spread through the house is just WRONG. When Noah comes to me and says "don't touch the poopies", I am filled with terror.
10. All 3 boys can put the doctor, two nurses, and Tim to the floor during a routine exam.
Friday, July 9, 2010
one of the best days ever
In the summer of 2001, Nate was 3 and Nick was 1. Tim was away at football camp and I was tired of being in the house with the boys. I decided to try taking them out on my own. The problem was they were too big to use the double stroller. This meant that Nate had to walk with me while I pushed Nick's stroller. Nate wandered away and did not respond when you called his name. I was determined.....
We went to the mall in Crestwood because they had a McDonald's in the food court. I got a front parking spot (a good sign) and put Nick in the stroller and had Nate in front of me with his hands on the stroller handle. We made it down the escalator....Nate was DEATHLY afraid of elevators. I put both boys in high chairs at a table close to the counter and ordered.
Crap! I forgot Nate's sippy cup. Apparently, that didn't matter. The OT at school taught him to drink out of a straw. Nate could drink out of a straw!!!!!!! We looked like a normal family with my two boys sitting at McDonald's eating their happy meals. Nate looked like a typical kid drinking out of a straw. I know that drinking out of a straw may be a nonimportant skill for some, but for me it was like a gold medal.
We got a lot of strange looks that day in the food court. There were two boys eating their happy meals, but all their mommy could do was sit and cry tears of joy.
That's when I knew the autism was not going to win.
We went to the mall in Crestwood because they had a McDonald's in the food court. I got a front parking spot (a good sign) and put Nick in the stroller and had Nate in front of me with his hands on the stroller handle. We made it down the escalator....Nate was DEATHLY afraid of elevators. I put both boys in high chairs at a table close to the counter and ordered.
Crap! I forgot Nate's sippy cup. Apparently, that didn't matter. The OT at school taught him to drink out of a straw. Nate could drink out of a straw!!!!!!! We looked like a normal family with my two boys sitting at McDonald's eating their happy meals. Nate looked like a typical kid drinking out of a straw. I know that drinking out of a straw may be a nonimportant skill for some, but for me it was like a gold medal.
We got a lot of strange looks that day in the food court. There were two boys eating their happy meals, but all their mommy could do was sit and cry tears of joy.
That's when I knew the autism was not going to win.
Thursday, July 8, 2010
getting help
So, now I have to call the Department of Mental Health. I can't get an appointment until May...hmmm...I am due in April. I explain this to the lady on the phone and she takes sympathy. I get an appointment in 2 weeks.
Tim and I take Nate in and they do a screening. He is more than 50% delayed in all areas. Nate is now 2 years old and registered at a 6 to 9 months level in all areas. Seeing that on paper is very hard. Somehow, having it on paper makes it more real..... He qualifies for speech, occupational therapy, developmental therapy, and ABA. He will receive 3 hours of speech, 3 hours of OT, 2 hours of developmental therapy, and 20 hours of ABA a week. OK, here's the problem, Tim and I both work full time. How is this going to happen? I may have to quit my job to stay home so Nate can get therapy.
My boys go to a wonderful sitter. She couldn't love the boys more if they were her own. She graciously offers the use of the spare bedroom for Nate's therapy. How did I get so lucky? Not only does she offer the room, she went with us to the ABA training and learned how to sign. She also brushed him and did joint compressions like the OT showed her. Helping Nate also became her mission.
I was delusional. I honestly thought that in a few weeks Nate would be "caught up." Boy, was I wrong. I had no idea how long and hard this was going to be. It's a marathon, not a sprint. It took months to teach him how to wave and clap. Everything became therapy and a learning opportunity. In some ways, we lost the time of just enjoying Nate.
While all this was going on, I had Nick.
Tim and I take Nate in and they do a screening. He is more than 50% delayed in all areas. Nate is now 2 years old and registered at a 6 to 9 months level in all areas. Seeing that on paper is very hard. Somehow, having it on paper makes it more real..... He qualifies for speech, occupational therapy, developmental therapy, and ABA. He will receive 3 hours of speech, 3 hours of OT, 2 hours of developmental therapy, and 20 hours of ABA a week. OK, here's the problem, Tim and I both work full time. How is this going to happen? I may have to quit my job to stay home so Nate can get therapy.
My boys go to a wonderful sitter. She couldn't love the boys more if they were her own. She graciously offers the use of the spare bedroom for Nate's therapy. How did I get so lucky? Not only does she offer the room, she went with us to the ABA training and learned how to sign. She also brushed him and did joint compressions like the OT showed her. Helping Nate also became her mission.
I was delusional. I honestly thought that in a few weeks Nate would be "caught up." Boy, was I wrong. I had no idea how long and hard this was going to be. It's a marathon, not a sprint. It took months to teach him how to wave and clap. Everything became therapy and a learning opportunity. In some ways, we lost the time of just enjoying Nate.
While all this was going on, I had Nick.
Wednesday, July 7, 2010
the dam just broke
I can't believe I am posting again, but I swear I have so much in my head.....
I used to cry in the car. I had a 40 minute drive one way to work so I did all my crying in the car. I couldn't cry at home because it would lead to a fight. So, for 80 minutes a day, I would cry in the privacy of my car and mourn the loss of the child I thought I was going to have. I can't believe I never caused an accident.
If I cried at home, Tim said that I couldn't love Nate the way he was. By God, that was the way God made Nate and Tim would love him no matter what! He didn't understand the mourning I was going through. Sometimes I wonder how our marriage survived. I think that having a special needs child is one of those big stressers on a marriage...right up there with losing a job and building a house.
My first thoughts when I was sitting in the neurologist's office that first day was "I CAN NEVER DIE!" I can't die.....what would happen to Nate if I died????????? I am sure that all parents think this, but you also know that your children will grow up and be able to care for and support themselves. This is not the case with Nate and now Noah.
I carry this thought with me daily.....it's heavy.
I used to cry in the car. I had a 40 minute drive one way to work so I did all my crying in the car. I couldn't cry at home because it would lead to a fight. So, for 80 minutes a day, I would cry in the privacy of my car and mourn the loss of the child I thought I was going to have. I can't believe I never caused an accident.
If I cried at home, Tim said that I couldn't love Nate the way he was. By God, that was the way God made Nate and Tim would love him no matter what! He didn't understand the mourning I was going through. Sometimes I wonder how our marriage survived. I think that having a special needs child is one of those big stressers on a marriage...right up there with losing a job and building a house.
My first thoughts when I was sitting in the neurologist's office that first day was "I CAN NEVER DIE!" I can't die.....what would happen to Nate if I died????????? I am sure that all parents think this, but you also know that your children will grow up and be able to care for and support themselves. This is not the case with Nate and now Noah.
I carry this thought with me daily.....it's heavy.
Here it goes......
Ok...so I am starting.....I have had people tell me for years that I need to write a book. A book seems so intimidating. I have a story to tell....sometimes it is sad and sometimes it is funny. I can't guarantee that I will be able to keep everything in chronological order or that my grammar will be perfect. Remember, I teach math for a reason.
I remember that Nate was such a quiet baby...he never babbled or turned his head when I called his name or raised his arms to be lifted. He also didn't clap, point, wave, or sleep well. He did, however, become transfixed with blinking lights and the scrolling updates along the bottom of the tv when Tim watched ESPN. I had to remove the hanging drawer pulls on the furniture and cabinets because he played with them so much that it dented the wood and the noise drove me crazy.
So, I had this nagging feeling that something was wrong with my beautiful blond haired blue eyed boy. For some reason the word autism popped in my head. I honestly don't know why.
Now at the time this was happening, I was already pregnant with Nick. I am sure that my hormones were not helping.
One day, I was sitting in the back of my classroom while my student teacher was teaching. I was looking up information online about autism and came across a checklist. As she was teaching algebra in the front of the room, my life fell apart in the back of the room. I was reading the checklist....yes he does this, yes he does this, yes he does this, no he doesn't do this, until I got to the end of the checklist. It said that if your child exhibits at least so many of these behaviors then you should contact your doctor. OH MY GOD!!!!!!! Nate exhibited all but two! OH MY GOD!!!!!! As my student teacher was teaching algebra, I was in the back of the room silently crying.
Now my husband didn't think anything was wrong with Nate. He loved Nate with all his heart and just couldn't fathom this.
In February 2000, while I was 7 months pregnant, we took Nate to see a pediatric neurologist. This was just days shy of Nate's 2nd birthday. He was a very kind man. The appointment lasted at least 2 hours. He diagnosed Nate with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). It is under the umbrella of Pervasive Developmental Disorders along with autism, ADD, and ADD-HD. In that whole appointment all Tim heard was PDD-NOS, not autism. What about the list of books to read and the people I had to call to set up therapy. The doctor recommended at least 20 hours a week. The doctor was just being kind....he changed the diagnosis to autism a short time later. I think he was trying to break it to us gently.
I remember walking to the car a little shell-shocked with a long list in my hand. We were supposed to read some books about autism and call the Department of Mental Health. We also had another appointment with the doctor in 2 weeks. The purpose of the next appointment was for the news to sink in and then he would answer all our questions.
We got in the car and Tim turned to me and said "See, I told you there was nothing wrong with him." OMG was he in the same appointment I was?????????
Boy, did I have my work cut out for me.............
I remember that Nate was such a quiet baby...he never babbled or turned his head when I called his name or raised his arms to be lifted. He also didn't clap, point, wave, or sleep well. He did, however, become transfixed with blinking lights and the scrolling updates along the bottom of the tv when Tim watched ESPN. I had to remove the hanging drawer pulls on the furniture and cabinets because he played with them so much that it dented the wood and the noise drove me crazy.
So, I had this nagging feeling that something was wrong with my beautiful blond haired blue eyed boy. For some reason the word autism popped in my head. I honestly don't know why.
Now at the time this was happening, I was already pregnant with Nick. I am sure that my hormones were not helping.
One day, I was sitting in the back of my classroom while my student teacher was teaching. I was looking up information online about autism and came across a checklist. As she was teaching algebra in the front of the room, my life fell apart in the back of the room. I was reading the checklist....yes he does this, yes he does this, yes he does this, no he doesn't do this, until I got to the end of the checklist. It said that if your child exhibits at least so many of these behaviors then you should contact your doctor. OH MY GOD!!!!!!! Nate exhibited all but two! OH MY GOD!!!!!! As my student teacher was teaching algebra, I was in the back of the room silently crying.
Now my husband didn't think anything was wrong with Nate. He loved Nate with all his heart and just couldn't fathom this.
In February 2000, while I was 7 months pregnant, we took Nate to see a pediatric neurologist. This was just days shy of Nate's 2nd birthday. He was a very kind man. The appointment lasted at least 2 hours. He diagnosed Nate with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). It is under the umbrella of Pervasive Developmental Disorders along with autism, ADD, and ADD-HD. In that whole appointment all Tim heard was PDD-NOS, not autism. What about the list of books to read and the people I had to call to set up therapy. The doctor recommended at least 20 hours a week. The doctor was just being kind....he changed the diagnosis to autism a short time later. I think he was trying to break it to us gently.
I remember walking to the car a little shell-shocked with a long list in my hand. We were supposed to read some books about autism and call the Department of Mental Health. We also had another appointment with the doctor in 2 weeks. The purpose of the next appointment was for the news to sink in and then he would answer all our questions.
We got in the car and Tim turned to me and said "See, I told you there was nothing wrong with him." OMG was he in the same appointment I was?????????
Boy, did I have my work cut out for me.............
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