And I'd do it again.
A "celebrity" has been very vocal in her choice not to vaccinate her children. She says she's not vaccinating them because she doesn't want them to get autism. And she's being very public about this. I wonder what her pediatrician has to say about this.
There is no medical proof that vaccines cause autism. The boys' pediatrician, neurologist, and psychiatrist have assured me of this. Sure, having kids with autism is hard....but wouldn't it also be difficult to have a child that falls ill with one of the diseases we can vaccinate against and dies? I think the guilt of knowing that I caused the death of my child by choosing not to vaccinate him would kill me.
I worry that she, like another celebrity, are using their persona to push their beliefs onto others. I wish that only medical personnel could be allowed to speak about "preventing" and "curing" autism. So many parents, like me, wish for a cure every day. It's so easy to "chase rainbows" in hopes of helping our children. Tim and I decided early on that we would only peruse treatments that were medically proven to help children with autism. I admit, there have been days that we have talked about trying some other approaches, but we have stuck to our guns. I realize that all children are different, but medication and therapy are working in our house.
Tuesday, March 25, 2014
Wednesday, January 15, 2014
3rd child discount
I was emailed information to apply for a $5000 grant from United Health Care to help cover some of the boys' bills. I wanted the money to pay for extra shifts for Nate since his hours were cut back.
As I was reviewing the criteria, I noticed that Tim and I exceed the household income limit. I called the contact number and spoke to someone regarding our situation. Yes, we exceed the income limit, but we have 3 children with autism. That's 3 times the co-pays. 3 times the therapies. 3 times the medications. Unfortunately, that did not matter.
When my sister and I went to high school, there was a tiered system for the tuition charges. The first child was full price, the second child was discounted, and the third child was free. Why can't that apply here?
How about a policy that every 10th co-pay is free? How about for every 100 hours of ABA, you get 5 hours free? How about a punch card for speech and OT visits?
Autism doesn't care how much money Tim and I make. Why should it matter to the insurance companies?
As I was reviewing the criteria, I noticed that Tim and I exceed the household income limit. I called the contact number and spoke to someone regarding our situation. Yes, we exceed the income limit, but we have 3 children with autism. That's 3 times the co-pays. 3 times the therapies. 3 times the medications. Unfortunately, that did not matter.
When my sister and I went to high school, there was a tiered system for the tuition charges. The first child was full price, the second child was discounted, and the third child was free. Why can't that apply here?
How about a policy that every 10th co-pay is free? How about for every 100 hours of ABA, you get 5 hours free? How about a punch card for speech and OT visits?
Autism doesn't care how much money Tim and I make. Why should it matter to the insurance companies?
Tuesday, December 31, 2013
Travis, we will miss you!
Last night team Hill gathered to say goodbye to the last original member of the team. Travis worked his last shift yesterday. He is moving out of state to begin a new chapter in his life.
Travis was the only staff member left from that original meeting in December of 2010. I wonder if he sensed my desperation that day. Did they all know that I was at my wits end? Did he know what was in store for him? Did he know that he would become a member of our family?
He's been with us for 3 years. He has seen it all….the poop, the vomit, the wandering, the throw-downs…all of it. He is the one who can tell the new team members, "You have no idea what it was like in the beginning." He has also seen the celebrations….the sentences, the chores, trying new things…. all of it. He's been the recipient of both Nate and Noah's anger and aggressive behavior. He's seen us through a death, 2 of my surgeries, and many sick boys. He has been with us on vacation.
Travis is also the record keeper of the group. He has taken countless pictures of the boys and all the staff members. He has turned these memories into photo books and calendars that we will always cherish.
I always knew that he would move on. His course work was finished and he was ready. Still, when he told us he was moving, I cried.
We had a great dinner last night. Many former team members stopped by and we spent so much time talking about the boys. It is always so fun to hear some of the fun stories again! There was so much laughter.
I know that even though Nate, Nick, and Noah won't show it, they will miss Travis very much. Maybe as much as Tim and I will. I hope he know how he helped all of us, not just the boys. His being on our team helped change 5 lives for the better.
Travis was the only staff member left from that original meeting in December of 2010. I wonder if he sensed my desperation that day. Did they all know that I was at my wits end? Did he know what was in store for him? Did he know that he would become a member of our family?
He's been with us for 3 years. He has seen it all….the poop, the vomit, the wandering, the throw-downs…all of it. He is the one who can tell the new team members, "You have no idea what it was like in the beginning." He has also seen the celebrations….the sentences, the chores, trying new things…. all of it. He's been the recipient of both Nate and Noah's anger and aggressive behavior. He's seen us through a death, 2 of my surgeries, and many sick boys. He has been with us on vacation.
Travis is also the record keeper of the group. He has taken countless pictures of the boys and all the staff members. He has turned these memories into photo books and calendars that we will always cherish.
I always knew that he would move on. His course work was finished and he was ready. Still, when he told us he was moving, I cried.
We had a great dinner last night. Many former team members stopped by and we spent so much time talking about the boys. It is always so fun to hear some of the fun stories again! There was so much laughter.
I know that even though Nate, Nick, and Noah won't show it, they will miss Travis very much. Maybe as much as Tim and I will. I hope he know how he helped all of us, not just the boys. His being on our team helped change 5 lives for the better.
Friday, December 13, 2013
Dear Santa,
Dear Santa,
Here's my wish list for this year:
1. A Lopez Waiver for Nate
2.
3.
Actually, that's all I want. Our new insurance company follows the law to the letter, $40,000/ year per child. $40,000 is a lot of money, so it should buy a lot of ABA services , right?
Wrong. It's about 14 hours a week. When you have a 15 year old that can't be left alone, that's not a lot.
Our DMH case manger called me yesterday and said, "Christmas came early!" I almost started to cry. I thought Nate got the waiver. No such luck. She was calling to tell me that Nick was awarded some funding. I don't want to sound ungrateful......however, what about Nate? He is much more severe and needs funding for more help.
So Santa, please help. Nate has come so far in the last three years with the help of 20+ hours of staffing a week. Cutting it back will bring setbacks, not more progress. I wish these people making these decisions would come visit and meet the recipients of the services before they put a cap on services or pass him over because he doesn't appear needy enough.
Please give me a Christmas miracle,
Stacey
Here's my wish list for this year:
1. A Lopez Waiver for Nate
2.
3.
Actually, that's all I want. Our new insurance company follows the law to the letter, $40,000/ year per child. $40,000 is a lot of money, so it should buy a lot of ABA services , right?
Wrong. It's about 14 hours a week. When you have a 15 year old that can't be left alone, that's not a lot.
Our DMH case manger called me yesterday and said, "Christmas came early!" I almost started to cry. I thought Nate got the waiver. No such luck. She was calling to tell me that Nick was awarded some funding. I don't want to sound ungrateful......however, what about Nate? He is much more severe and needs funding for more help.
So Santa, please help. Nate has come so far in the last three years with the help of 20+ hours of staffing a week. Cutting it back will bring setbacks, not more progress. I wish these people making these decisions would come visit and meet the recipients of the services before they put a cap on services or pass him over because he doesn't appear needy enough.
Please give me a Christmas miracle,
Stacey
Tuesday, November 5, 2013
Halloween 2013
Halloween is always stressful at our house. Nick is totally into it and Noah usually goes along with it. Nate, however, has always been the issue. He doesn't like to dress up and he really doesn't understand trick or treating. If you open your front door for Nate, he's going to walk in your house. So, I the past, Nate has been the problem at Halloween. This Halloween, was very different.
Tim had a football game on Halloween. So, we were already down one adult. I took Nick to a friend's house and he trick or treated with them. This left me at home to hand out candy and Nate and Noah with their staff.
Both boys put on their costumes with no problem...even Nate. This was encouraging. Since the weather was so bad, they decided to go trick or treating at the mall. I thought this would be better for Nate, since this eliminated the whole going in people's houses. It was so crowded at the mall that staff decided to take the boys to Krispy Kreme for their free donuts and then home to see the neighbors.
When Noah goes to the mall, he wants to ride the escalator and go to the play place. Well, neither of those things happened on Halloween. It was so crowded that they just turned around to leave. Noah was not having any of that. He dropped to the ground and started screaming. For Noah's staff member, it was her first experience with a Noah fit. I am really glad that she was not with him alone. Nate's staff member had plenty of experience with a Noah fit apparently, this one lasted 25 minutes. They said they were surprised that mall security did not get involved.
When he quieted down, they were able to get him in the car. They still stopped at Krispy Kreme. Nate went in and got his donut and Noah sat in the car. He was not going to get a treat to reinforce his behavior at the mall. When they got home, Nate went trick or treating at the neighbor's houses. He said "trick or treat" and did not try to enter their homes. While Nate did this, Noah took a bath and went straight to bed. He was exhausted after his meltdown. Nate proudly showed me his candy and had another donut.
If you had told me that Nate would have a great Halloween, I would have bet against you. It just shows that in an autism house, nothing is a sure thing.
Tim had a football game on Halloween. So, we were already down one adult. I took Nick to a friend's house and he trick or treated with them. This left me at home to hand out candy and Nate and Noah with their staff.
Both boys put on their costumes with no problem...even Nate. This was encouraging. Since the weather was so bad, they decided to go trick or treating at the mall. I thought this would be better for Nate, since this eliminated the whole going in people's houses. It was so crowded at the mall that staff decided to take the boys to Krispy Kreme for their free donuts and then home to see the neighbors.
When Noah goes to the mall, he wants to ride the escalator and go to the play place. Well, neither of those things happened on Halloween. It was so crowded that they just turned around to leave. Noah was not having any of that. He dropped to the ground and started screaming. For Noah's staff member, it was her first experience with a Noah fit. I am really glad that she was not with him alone. Nate's staff member had plenty of experience with a Noah fit apparently, this one lasted 25 minutes. They said they were surprised that mall security did not get involved.
When he quieted down, they were able to get him in the car. They still stopped at Krispy Kreme. Nate went in and got his donut and Noah sat in the car. He was not going to get a treat to reinforce his behavior at the mall. When they got home, Nate went trick or treating at the neighbor's houses. He said "trick or treat" and did not try to enter their homes. While Nate did this, Noah took a bath and went straight to bed. He was exhausted after his meltdown. Nate proudly showed me his candy and had another donut.
If you had told me that Nate would have a great Halloween, I would have bet against you. It just shows that in an autism house, nothing is a sure thing.
Noah update
We had Noah's IEP a few weeks ago. It lasted 2 hours. It's so funny, in my building, the kids don't receive as many services, so the IEPs last about 45 minutes. I think 2 hours is Noah's shortest IEP so far.
Noah's behavior has greatly improved, both at home and in school. He still struggles is school when a classmate is having a meltdown. Noah is an empathetic crier. If you are crying, he will cry with you. I guess he thinks that no one should meltdown alone. They are now trying to get Noah out of the rio when a classmate is starting to rev up.
The OT is concerned with Noah's handwriting. She has not seen much improvement over the past year. She asked about typing, but I said no. I think we need to keep up with the handwriting. I'm afraid that if we start typing, he will never write. He also needs to have a signature when begets older. Our home OT will help get the staff on the same page with handwriting. This way he can also practice at home. I was also pleasantly surprised when the school OT wanted to increase his OT minutes.
The classroom teacher wants to up his academic goals. She wants to move Noah into the Dolce 1st grade words. She also wants to start counting by 5's and 10's. When we get these things implemented in his home therapy, he will master these in no time. All the therapists agreed that he learns so quickly.
It seems that he makes great strides every day. I am anxious to see where we are in another year!
Noah's behavior has greatly improved, both at home and in school. He still struggles is school when a classmate is having a meltdown. Noah is an empathetic crier. If you are crying, he will cry with you. I guess he thinks that no one should meltdown alone. They are now trying to get Noah out of the rio when a classmate is starting to rev up.
The OT is concerned with Noah's handwriting. She has not seen much improvement over the past year. She asked about typing, but I said no. I think we need to keep up with the handwriting. I'm afraid that if we start typing, he will never write. He also needs to have a signature when begets older. Our home OT will help get the staff on the same page with handwriting. This way he can also practice at home. I was also pleasantly surprised when the school OT wanted to increase his OT minutes.
The classroom teacher wants to up his academic goals. She wants to move Noah into the Dolce 1st grade words. She also wants to start counting by 5's and 10's. When we get these things implemented in his home therapy, he will master these in no time. All the therapists agreed that he learns so quickly.
It seems that he makes great strides every day. I am anxious to see where we are in another year!
Sunday, October 6, 2013
We went to a movie...
Yesterday, the AMC theater in Creve Coeur had a Sensory Free movie. This means that they didn't turn the lights down all the way and didn't turn the sound all the way up. They also didn't show any previews so the movie length was shorter.
Katie and I took Nate and Noah. I was a little nervous. I had yet to sit through a whole movie with the boys. Unfortunately, AMC did not let Katie in for free. We had Noah's letter from Behavior Intervention Services, but no such luck. Most places will allow the staff in for free. This may not seem like a big deal....a few dollars here and there, but when you have to take an extra person with you everywhere, it gets expensive. The manager did photocopy the letter and will contact the corporate office. Let's hope that next time staff will be let in at no charge.
It was so nice! The auditorium was not quiet. The kids were doing what they had to do to get through the movie. Many of them were covering their ears, flapping, making sounds, and getting up and pacing. One teen stood in the aisle the entire time. No one asked him to sit down. No one stared at any of the kids. No one asked any of the kids to be quiet.
We went through a couple refills of our large popcorn. I think the highlight for my boys was the popcorn. I am not sure if they can follow a plot longer than an episode of Thomas the Tank Engine. Noah asked to use the bathroom twice and was getting a little antsy the last 20 minutes. Nate sat in his seat the whole time. He verbalized when he noticed things on the screen...."boat" and "cheeseburger".
My kids were with their peers. They were not a minority. They were able to be themselves and so were all the other kids in the theater. I did not notice any parents looking anxious and nervous because they were afraid of how others would react to their children. The kids were comfortable. The parents were comfortable. It was a good outing.
Katie and I took Nate and Noah. I was a little nervous. I had yet to sit through a whole movie with the boys. Unfortunately, AMC did not let Katie in for free. We had Noah's letter from Behavior Intervention Services, but no such luck. Most places will allow the staff in for free. This may not seem like a big deal....a few dollars here and there, but when you have to take an extra person with you everywhere, it gets expensive. The manager did photocopy the letter and will contact the corporate office. Let's hope that next time staff will be let in at no charge.
It was so nice! The auditorium was not quiet. The kids were doing what they had to do to get through the movie. Many of them were covering their ears, flapping, making sounds, and getting up and pacing. One teen stood in the aisle the entire time. No one asked him to sit down. No one stared at any of the kids. No one asked any of the kids to be quiet.
We went through a couple refills of our large popcorn. I think the highlight for my boys was the popcorn. I am not sure if they can follow a plot longer than an episode of Thomas the Tank Engine. Noah asked to use the bathroom twice and was getting a little antsy the last 20 minutes. Nate sat in his seat the whole time. He verbalized when he noticed things on the screen...."boat" and "cheeseburger".
My kids were with their peers. They were not a minority. They were able to be themselves and so were all the other kids in the theater. I did not notice any parents looking anxious and nervous because they were afraid of how others would react to their children. The kids were comfortable. The parents were comfortable. It was a good outing.
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