I think we've made progress.......
Nate was watching a Bear in the Big Blue House DVD tonight. I went back to check on him twice and the DVD had frozen. He was just sitting on his bed waiting off the DVD to start again. When I walked in, he just kept saying, "Bear." He wasn't crying, he wasn't stomping his feet, and he wasn't making his his pitched shrieking noises.
Normally, he'd be inconsolable. He would have come to find me already in tears. After I'd walked back in his room and told him it was broken, all hell would break loose. The first step would be blinking quickly for a minute and the crying would start.....full out wailing. Next, he'd stomp his feet. To make sure I knew he meant business, he'd clap at me a few times and start screaming.
None of that happened tonight. Granted, I wish he would have come and asked for help, but I will chalk this one up as a win.
Tuesday, August 19, 2014
We finally saw a lawyer…….
Tim and I finally saw a lawyer a few weeks ago. We needed help planning for the future. It's always difficult, but with the boys' situations, we need to have everything set up correctly.
I googled "special needs lawyer" along with my zip code and a list came up. I just picked the one closest to the house. Their firm only handles estate planning, elderly planning, and disability benefits. I felt like they were the right choice.
The lawyer we met with was very patient and was able to answer all our questions. We talked about the boys and our hopes for the future. She knew what we needed to do for the boys and how to set things up. We talked about creating a trust that will protect all the assets and allow the boys to receive their SSI benefits and medicaid. She also spelled out our future steps, which include becoming Nate's guardian when he turns 18.
It's still a very overwhelming process…..so many decisions to make and so many papers to sign. It would just be easier if I could live forever.
I googled "special needs lawyer" along with my zip code and a list came up. I just picked the one closest to the house. Their firm only handles estate planning, elderly planning, and disability benefits. I felt like they were the right choice.
The lawyer we met with was very patient and was able to answer all our questions. We talked about the boys and our hopes for the future. She knew what we needed to do for the boys and how to set things up. We talked about creating a trust that will protect all the assets and allow the boys to receive their SSI benefits and medicaid. She also spelled out our future steps, which include becoming Nate's guardian when he turns 18.
It's still a very overwhelming process…..so many decisions to make and so many papers to sign. It would just be easier if I could live forever.
Friday, July 11, 2014
I'm obsessed with life insurance….
Two thoughts always go through my mind:
1. I can never die.
2. When I do die, will I have enough life insurance to allow Nate and Noah to live comfortably?
Since I know that not dying is not an option, I now worry about #2. So….I am obsessed with life insurance. I have it through my work, Tim's work, and the NEA. I have taken out the maximum amount allowed through each provider. I still fear that it's not enough.
Nate and Noah will never work to support themselves. If they do work, it will pay a very insignificant amount. I am not confident that Social Security and/or Medicaid will be enough to allow them to live comfortably.
I do not want their living expenses to be Nick's responsibility. Since he will have to take care of all the other aspects of their lives, I want to take care of this one.
Another application came in the mail today…..excuse me while I fill it out.
1. I can never die.
2. When I do die, will I have enough life insurance to allow Nate and Noah to live comfortably?
Since I know that not dying is not an option, I now worry about #2. So….I am obsessed with life insurance. I have it through my work, Tim's work, and the NEA. I have taken out the maximum amount allowed through each provider. I still fear that it's not enough.
Nate and Noah will never work to support themselves. If they do work, it will pay a very insignificant amount. I am not confident that Social Security and/or Medicaid will be enough to allow them to live comfortably.
I do not want their living expenses to be Nick's responsibility. Since he will have to take care of all the other aspects of their lives, I want to take care of this one.
Another application came in the mail today…..excuse me while I fill it out.
Tuesday, June 17, 2014
Vacation
For the past few years, Tim and I have been wanting to take the boys to the beach. It just seemed impossible…..the long drive, the crowds, and would they get in the water? I was afraid of many things; would Noah have a huge meltdown after five hours of driving and refuse to get back in the car, would Nate not touch the sand, would we lose Noah in the crowd at the beach or in the waves?
Only one of those fears came to fruition…..
We broke the 12 hour drive up into two days. We drove seven hours the first day to Jackson, MS and then cut over to Pensacola the second day. When we returned, we stayed at the same hotel to keep a routine. The boys handled the drive really well. We stopped often to use the restroom (Noah had one small accident in the car) and switch cars (we took two). I think switching cars really helped, as did the DVD player in the van and their IPads.
The condo we rented was beachfront and on the 12th floor. For the first couple of days, Nate and Noah would not go out on the balcony. As time went on, they would venture out and eat meals outside. Noah was not allowed on the balcony unattended…..I just didn't trust him to be out there by himself. Nick liked the balcony form the beginning and ate most meals outside.
Nick and Noah loved the ocean right from the start. Nate on the other hand……. It took two days and he finally would go in. Tim handled Nate beautifully and got him in the water so much quicker than I thought. I was hoping Nate would go in the water by the 4th day, Tim had him in the 2nd day. We would hit the pool in the morning and then prep Nate by telling him we would go the the ocean after lunch and then talk about it through out the morning. This schedule worked well for Nate. It was also nice that the pools were right on the beach, so when Nate was finished with the ocean, someone could take him up to the pool. Nick and Noah played in the ocean as much as possible. I think Noah thought it was the best wave pool ever!
We stayed on Perdido Key, which is less crowded than Destin or Orange Beach. To avoid crowded restaurants, we only ate out once, and that was for lunch. It was easier to cook familiar foods at home instead of going to unfamiliar, crowded restaurants.
In order to make this vacation a success, we enlisted help from many people. Besides the five of us, we took my mom, our nanny, and two staff members. Without these extra hands, we could not have taken this vacation.
The trip was such a success that on the way home my mom and I were discussing where to take the boys next year. For the first time our vacation choices seem less limited…...
Only one of those fears came to fruition…..
We broke the 12 hour drive up into two days. We drove seven hours the first day to Jackson, MS and then cut over to Pensacola the second day. When we returned, we stayed at the same hotel to keep a routine. The boys handled the drive really well. We stopped often to use the restroom (Noah had one small accident in the car) and switch cars (we took two). I think switching cars really helped, as did the DVD player in the van and their IPads.
The condo we rented was beachfront and on the 12th floor. For the first couple of days, Nate and Noah would not go out on the balcony. As time went on, they would venture out and eat meals outside. Noah was not allowed on the balcony unattended…..I just didn't trust him to be out there by himself. Nick liked the balcony form the beginning and ate most meals outside.
Nick and Noah loved the ocean right from the start. Nate on the other hand……. It took two days and he finally would go in. Tim handled Nate beautifully and got him in the water so much quicker than I thought. I was hoping Nate would go in the water by the 4th day, Tim had him in the 2nd day. We would hit the pool in the morning and then prep Nate by telling him we would go the the ocean after lunch and then talk about it through out the morning. This schedule worked well for Nate. It was also nice that the pools were right on the beach, so when Nate was finished with the ocean, someone could take him up to the pool. Nick and Noah played in the ocean as much as possible. I think Noah thought it was the best wave pool ever!
We stayed on Perdido Key, which is less crowded than Destin or Orange Beach. To avoid crowded restaurants, we only ate out once, and that was for lunch. It was easier to cook familiar foods at home instead of going to unfamiliar, crowded restaurants.
In order to make this vacation a success, we enlisted help from many people. Besides the five of us, we took my mom, our nanny, and two staff members. Without these extra hands, we could not have taken this vacation.
The trip was such a success that on the way home my mom and I were discussing where to take the boys next year. For the first time our vacation choices seem less limited…...
Tuesday, March 25, 2014
I did vaccinate my children....
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.
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.
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.
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