Yesterday I spent ALL day having Hanna re-evaluated at the U of M. Her fetal alcohol diagnosis and comprehensive assessment are a few years old so no one will let us use them any more. This re-evaluating thing bothers me because she has the same Fetal Alcohol Spectrum Disorder she has had since birth, the same intelligence, same impulsive behavior, with poor judgement, the same concrete thinking, essentially the same alphabet soup so why are we doing this again? I really do not understand why there can not be a system in place where some persons who are permanently disabled can be given that information so they would not have to go through this re-evaluation nonsense over and over again. Seriously this would save lots of money and time for everyone.
I do understand that there are persons who have disabilities which are temporary and those persons would need to be involved in this re-evaluation process. When a person has prostetic eyes they are not going to suddenly get their vision back. When there is a traumatic brain injury, that is not going to go away. When a person has lost limbs they are not going to grow back. The Cerebral Palsy or Down Syndrome is not going away so lets just call things as they are and get rid of this re-evaluating thing and move forward.
All I want from this nonsense is a clear statement that addresses the fact that Hanna needs structure, supervision, and routine and her need for these things will be on-going for life. Services need to stay in place for her when she is doing well, because if they are taken away we have a downward free fall which leads to major issues and then we have to go about getting those services re-instated which leads to more re-evaluations, paperwork, interviews, and on and on and on. We need to stop this roller coaster and get on a calmer, more consistent train ride in the country and then maybe we can actually take some time to enjoy the scenery.
Tuesday, August 28, 2012
Monday, August 20, 2012
Ready To Go
About 2 weeks until school starts so I guess I had better figure out what needs to be purchased.
I went through the drawers and closets and everyone is okay with the clothes they have, except for Hanna who can`t get any of her jeans on. She has not gotten any taller so now I have to find girls plus size jeans. It is hard to get those cheap, which is what I need to do since she is gong to destroy them anyway. I need to get Allen and Paul some socks since their`s have no elastic left in them. Paul has grown out of his shoes so he will need new ones. I already got the black pants and shoes Lauren needs for her new job.
Paul has a list of things he is supposed to have. Looking at that list and considering his needs I am making lots of changes. He is going to need extra clothes long before he will use 6 notebooks. He goes through a lot more wipes and tissues then the average 2nd grader so I will send 2 boxes instead of one.
I have not seen any list for the older kids yet, but I think that replacing the toothpaste, toothbrushes, deodorant, wipes, and folders is usually all I need to do.
There aren`t going to be any shopping trips costing hundreds of dollars taking place here before sending them out the door.
I think everyone is ready to get back into the school routine, I know I am. I am also hoping that this school year allows me to have more mom time and less medical time.
I went through the drawers and closets and everyone is okay with the clothes they have, except for Hanna who can`t get any of her jeans on. She has not gotten any taller so now I have to find girls plus size jeans. It is hard to get those cheap, which is what I need to do since she is gong to destroy them anyway. I need to get Allen and Paul some socks since their`s have no elastic left in them. Paul has grown out of his shoes so he will need new ones. I already got the black pants and shoes Lauren needs for her new job.
Paul has a list of things he is supposed to have. Looking at that list and considering his needs I am making lots of changes. He is going to need extra clothes long before he will use 6 notebooks. He goes through a lot more wipes and tissues then the average 2nd grader so I will send 2 boxes instead of one.
I have not seen any list for the older kids yet, but I think that replacing the toothpaste, toothbrushes, deodorant, wipes, and folders is usually all I need to do.
There aren`t going to be any shopping trips costing hundreds of dollars taking place here before sending them out the door.
I think everyone is ready to get back into the school routine, I know I am. I am also hoping that this school year allows me to have more mom time and less medical time.
Wednesday, August 15, 2012
Just Another Day...
Hanna gets her cast off early this morning so we will get a good look at how that foot of hers is doing. She definently is in no pain the way she has been running and thumping around here.
After we get done with that drama we are heading to Gillette for the third day in a row. It looks like the shunt situation is being put on the fast track since Lauren was having more issues then usual on Monday. When medical people want things to get things done they can move it out in a hurry.
So that is what we are up to, filling out papers, waiting for this and that, filling out more papers, and yeah there will be some Hanna drama there too, just to keep things from getting boring.
After we get done with that drama we are heading to Gillette for the third day in a row. It looks like the shunt situation is being put on the fast track since Lauren was having more issues then usual on Monday. When medical people want things to get things done they can move it out in a hurry.
So that is what we are up to, filling out papers, waiting for this and that, filling out more papers, and yeah there will be some Hanna drama there too, just to keep things from getting boring.
Wednesday, August 8, 2012
Summer, Snacks, And RAD
Summer is moving right along here. Next month the littles will be back on school schedule. Paul is in summer school for the next couple of weeks giving us a quieter morning. Allen has decided that he does not have to get up at the crack of dawn, so he is managing to get down here after the breakfast kitchen has closed. (That is after 9:00 am). Getting him back on school schedule might be a bit of a challenge. The girls are up and running out of things to do by 9;00 am so they have been acquiring extra chores, just because I get tired of them watching me do all the work.
Our RAD child has morphed into a new state of radism that goes something like this. I hate you, I don`t wanna, I`m not gonna, you can`t make me, and on and on and on. The mouth is working overtime at irritating everyone. I guess this is the more adult version of RAD. It is less physically violent that is for sure. Is it any better? Not really, it is just different. It can be very annoying so sometimes we just have to tune her out.
Oh we still have all out melt downs 3 or more times a week, but not multiple times every day. Then last weekend we had an all out blow up which consumed the entire day with violence, just to remind us that we are on this RAD roller-coaster for life.
I was cleaning up downstairs when I came across 19 empty fruit snack wrappers, so I ask Hanna how the snacks were and she says "I didn`t eat any fruit snacks". Since I had asked about snacks, not fruit snacks specifically I guess she told me exactly who had eaten them. I am guessing that when we get back to the orthodontist there will be a mess to straighten out in her mouth, aurgh!
Our RAD child has morphed into a new state of radism that goes something like this. I hate you, I don`t wanna, I`m not gonna, you can`t make me, and on and on and on. The mouth is working overtime at irritating everyone. I guess this is the more adult version of RAD. It is less physically violent that is for sure. Is it any better? Not really, it is just different. It can be very annoying so sometimes we just have to tune her out.
Oh we still have all out melt downs 3 or more times a week, but not multiple times every day. Then last weekend we had an all out blow up which consumed the entire day with violence, just to remind us that we are on this RAD roller-coaster for life.
I was cleaning up downstairs when I came across 19 empty fruit snack wrappers, so I ask Hanna how the snacks were and she says "I didn`t eat any fruit snacks". Since I had asked about snacks, not fruit snacks specifically I guess she told me exactly who had eaten them. I am guessing that when we get back to the orthodontist there will be a mess to straighten out in her mouth, aurgh!
Wednesday, August 1, 2012
Hanna Days
We have made it through 2 Hanna events in the last few days.
First we celebrated her 15th birthday. It really was not much of a celebration since things like that send her to crazy land. We met up with a few relatives and went swimming. Afterward we had a picnic. Hanna attempted to throw the few gifts she got away. She claims the only thing she liked about the day was eating the banana bread Grandma brought. I am not quite believing this, but if that is what she wants us to think that is okay.
The next morning the phone rang at 5:30 am and it was the surgery center calling to see if we could come in a couple of hours earlier then scheduled. This turned out to be great since that left us with just enough time to get dressed and head out and it left absolutely no time for Hanna to get angry because she could not eat anything.
Once there we had basically the same staff that was there last winter, on the day filled with more drama then any of them had been a part of in a very long time. The couple of new people, who wanted to do things as they usually do were quickly redirected to work with the prevent plan that we wanted to try. The prevent plan worked and we were able to come home late in the afternoon. Hanna was on enough meds to keep her pretty much sleeping until the next morning. I am so glad this went well and we did not have to spend time in the hospital. Medical personal can learn from their experiences.
So now we have a kid who is one year older and a foot free of it hardware.
First we celebrated her 15th birthday. It really was not much of a celebration since things like that send her to crazy land. We met up with a few relatives and went swimming. Afterward we had a picnic. Hanna attempted to throw the few gifts she got away. She claims the only thing she liked about the day was eating the banana bread Grandma brought. I am not quite believing this, but if that is what she wants us to think that is okay.
The next morning the phone rang at 5:30 am and it was the surgery center calling to see if we could come in a couple of hours earlier then scheduled. This turned out to be great since that left us with just enough time to get dressed and head out and it left absolutely no time for Hanna to get angry because she could not eat anything.
Once there we had basically the same staff that was there last winter, on the day filled with more drama then any of them had been a part of in a very long time. The couple of new people, who wanted to do things as they usually do were quickly redirected to work with the prevent plan that we wanted to try. The prevent plan worked and we were able to come home late in the afternoon. Hanna was on enough meds to keep her pretty much sleeping until the next morning. I am so glad this went well and we did not have to spend time in the hospital. Medical personal can learn from their experiences.
So now we have a kid who is one year older and a foot free of it hardware.
Tuesday, July 24, 2012
The Run Around
I am definitely getting the run around and it is beginning to make me just a bit angry. I have 3 kids who have complex medical issues for which they need treatment in the metro area. We are supposed to be reimburssed for our travel expenses, but in order to get that payment we need an annual referral. We have had the same physician write the referrals for the past 12 plus years and they have been fine. Now the referral which clearly states that the kids have complex medical issues and need to be treated out of this area is no longer good enough. They want:
ALL the medical diagnosis
names of ALL the physicians and therapists
a specific number of appointments
exact dates and times of ALL appointments
specific locations of all appointments when the referral is written
assurance that there is no provider closer who can provide the care
Our physician does not have time to be writing ALL of this out just for a travel reimbursement and I don`t have time to be bugging him about this all the time. Besides those 2 factors we do not have any idea how long (likely for all of their lives) they will need to be followed, the physicians and therapists change frequently, and we certainly do not know the dates and times of All appointments in advance. If we have a seizure issue tonight we may be running immediately.
I spoke with a supervisor who told me that if we could afford to adopt these kids then we could afford to cover these expenses and we should stop bother them about this .
My response is that even though they are going to try to make this impossible I WILL be there with whatever paperwork they want, heck if it makes them happy they can pay one of their staff to follow me around while I take these kids to all of these appointments. The issue here is simply that they are eligible for this service (and many others which no one even bothers to tell you about) and all of this running gets expensive. The payments do not in any way cover our costs. The whole idea that middle class families can absorb the expenses incurred raising kids with special needs is beyond nuts. This is what we get for adoption support around here and it needs to stop. We are families who sacrifice much while caring for the kids society throws away.
ALL the medical diagnosis
names of ALL the physicians and therapists
a specific number of appointments
exact dates and times of ALL appointments
specific locations of all appointments when the referral is written
assurance that there is no provider closer who can provide the care
Our physician does not have time to be writing ALL of this out just for a travel reimbursement and I don`t have time to be bugging him about this all the time. Besides those 2 factors we do not have any idea how long (likely for all of their lives) they will need to be followed, the physicians and therapists change frequently, and we certainly do not know the dates and times of All appointments in advance. If we have a seizure issue tonight we may be running immediately.
I spoke with a supervisor who told me that if we could afford to adopt these kids then we could afford to cover these expenses and we should stop bother them about this .
My response is that even though they are going to try to make this impossible I WILL be there with whatever paperwork they want, heck if it makes them happy they can pay one of their staff to follow me around while I take these kids to all of these appointments. The issue here is simply that they are eligible for this service (and many others which no one even bothers to tell you about) and all of this running gets expensive. The payments do not in any way cover our costs. The whole idea that middle class families can absorb the expenses incurred raising kids with special needs is beyond nuts. This is what we get for adoption support around here and it needs to stop. We are families who sacrifice much while caring for the kids society throws away.
Sunday, July 22, 2012
Ouch
I took Hanna into see the foot doc. We were supposed to be deciding the marits of an orthotic/brace verses leaving it alone. It turns out that she has broken the screw that was holding the bone in her heel together off sometime in the last eight weeks. The thing is free floating in there and she HAS to be in pain, but given the choice between telling someone (which means getting it fixed) and suffering she will always choose to suffer. The Doc says that about 15% of the time those screws cause pain and need to be removed, but he has never seen someone break it off like that. Hanna can accomplish just about anything if she wants too.
This tells me that her mental health issues far out weight the physical ones.
That is rather scary when you stop to think about the affects that has on her well being. She will without giving it a second thought harm herself or others.
We need to get that screw out of there as soon as possible so she is scheduled for surgery July 30th. I guess there will be no more swimming and running around outside for her for the last month of summer vacation. Just thinking about it is making me tired already.
As her Dad says the kid has a few screws loose all the time.
This tells me that her mental health issues far out weight the physical ones.
That is rather scary when you stop to think about the affects that has on her well being. She will without giving it a second thought harm herself or others.
We need to get that screw out of there as soon as possible so she is scheduled for surgery July 30th. I guess there will be no more swimming and running around outside for her for the last month of summer vacation. Just thinking about it is making me tired already.
As her Dad says the kid has a few screws loose all the time.
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