for the Love of Grace
My Beautiful Grace
Monday, October 13, 2014
First Visit
Dad and I went to the SH yesterday to see Grace. Brother and Sister stayed home. Sister had been sick the day before so we didn't want to take her. Brother is still struggling with everything, so he didn't want to go. Also we didn't know the process for visiting yet, as far as checking in and how it would go. It was just easier for the two of us to go. We went down and took some food to share. I guess the food is pretty bad there. The joke is the kids get better because they hate the food so much. When we got there the staff came to let us in and Grace was with her. It was so nice to be able to wrap my arms around her. That felt so good. When she is happy she is truly the sweetest kid you'll ever meet. Trust me I can't tell you how many people are shocked to her what we have been through with her. I always embrace and enjoy the good moments with her. Really we never know how long they will last. She can flip the switch with out warning. For the first part of our visit we had to be in a conference room. We ate our food and visited. She was telling us things she did and didn't like. We tried to keep it positive. After we ate Grace taught us a couple of card games that were really fun. It was so fun to laugh and giggle with her. She really is a fun person to be around. We stayed for about 2 and half hours with her. She defiantly started to get upset when we were leaving. It was hard to say good bye. This for her is still so new. She asks on the phone to come home. I hate having to say no. I hate doing things because it is for their own good. I am grateful for the hope that this will work. I am grateful for the peace and normalcy I can give to Brother and Sister for now. I am grateful for my sweet husband who is by my side when these hard decisions have to be made. I am grateful for forgiveness so we can move on from all these hard things. I am grateful for eternal families so that i have some perspective of what all of this is for. I am grateful for Love because it can conquer all. I am grateful that Grace is ours, because I was prepared to be this child's Mom and to help her overcome these challenges. I am grateful for the many friends and family that have supported us endlessly through this difficult time. I am grateful for for the love and support we get from everyone who reads this.
State Hospital Vs. Hogwartz
So I know I am going to get asked a ton of questions. I am ok with that. Here are my thoughts first.
I know many will wonder why we feel the State Hospital (SH) will work when Hogwarts didn't?
We look back now at Hogwarts and feel like this was set to fail from the beginning. As you may remember we had to constantly fight with the insurance company for more time. This made it so they never knew exactly how long Grace would be there. For this reason Hogwarts was not able to work with Grace on certain things. The fear was that if they started something they couldn't finish it would be worse for her.
How can we do this if insurance wouldn't pay anymore for Hogwarts. Here is the good and the bad. The minute Grace was admitted to the SH she became eligible for Medicaid. We don't have to work about insurance denying coverage. Happy day. One stress taken away. The bad, we are still finically responsible for her. That isn't the bad part. We have to pay monthly child support for her. And until all the paper work in completed we have no idea how much that is going to cost us. We can afford to support our children in our home with no problem. However we don't have any idea how much we will be expected or required to pay. The estimates that we have been given are pretty scary. I don't know about you but we don't have that much extra $ each month just lying around. I just tell myself one day at a time. We have been lead down this path and I have faith that we will find a way when the time comes.
Hogwarts was what we needed at the time. We also know that every step has lead us to where we are. Talking with DCFS was very helpful to help us realize that this really is the only thing left for us to try. We were to the point that keeping everyone in the home was very difficult. Grace would lash out at everyone, including our dogs. We had to look at the bigger picture. Having Grace go to the SH was not an easy decision, but the trauma that this has caused for Brother and Sister made it very obvious that we had to.
Brother and Sister are struggling with their feelings about all of this. They are sad and very much miss their sister. However they were very afraid of her. Everyone walked on eggshells when Grace was home. You never knew if you were going to say or do something that would set her off. I can't count how many times Brother and Sister would run to a neighbors house for safety. Brother was there the last day she was home and I got hit in the nose. He was so afraid that it was broken he couldn't calm down. He called the therapist hysterical. That is not good for anyone. Brother and Sister are so upset and traumatized that they aren't ready to talk to or see Grace. We know that they will get there. We are continuing to work with the therapist so that we can all heal and be ready when Grace comes home. In the mean time we enjoy the peace.
So far we really like the SH. The staff has been really nice and very helpful. They have put Grace in the adolescent unit. At first I was concerned about this. I asked why this had been done and they said because it is easier then trying to move her a few months down the road. They didn't want to get her use to the rules, staff, and kids in the younger unit to have to have her start over agin. Once they told us I agreed that this was for the best. We are still trying to figure out what she can and can't have with her. As with everything there is always a learning curve. One thing I love is that Grace has her own room. I was very worried about her sharing a room. They have constant supervision, but at Hogwarts Grace always told stories of things they talked about while in their beds at night. It is a lot harder to monitor kids at night. Hogwarts had 4 girls to a room. You can't always know what is going on or being said that way. I love how the school is structured at the SH. Grace is one of 9 kids in her class. School work is given to each kid to meet their needs. She will be able to work at her own pace. Grace is very smart so this is great for her. My only wish is that the SH was a little closer to our home. We realized how driving down to Hogwarts really affected Brother and Sisiter. They really missed out on so much. We are trying to be more mindful of them and their needs. Because of this we feel like we won't see Grace as much as we would like. As with everything we will do our best.
I know many will wonder why we feel the State Hospital (SH) will work when Hogwarts didn't?
We look back now at Hogwarts and feel like this was set to fail from the beginning. As you may remember we had to constantly fight with the insurance company for more time. This made it so they never knew exactly how long Grace would be there. For this reason Hogwarts was not able to work with Grace on certain things. The fear was that if they started something they couldn't finish it would be worse for her.
How can we do this if insurance wouldn't pay anymore for Hogwarts. Here is the good and the bad. The minute Grace was admitted to the SH she became eligible for Medicaid. We don't have to work about insurance denying coverage. Happy day. One stress taken away. The bad, we are still finically responsible for her. That isn't the bad part. We have to pay monthly child support for her. And until all the paper work in completed we have no idea how much that is going to cost us. We can afford to support our children in our home with no problem. However we don't have any idea how much we will be expected or required to pay. The estimates that we have been given are pretty scary. I don't know about you but we don't have that much extra $ each month just lying around. I just tell myself one day at a time. We have been lead down this path and I have faith that we will find a way when the time comes.
Hogwarts was what we needed at the time. We also know that every step has lead us to where we are. Talking with DCFS was very helpful to help us realize that this really is the only thing left for us to try. We were to the point that keeping everyone in the home was very difficult. Grace would lash out at everyone, including our dogs. We had to look at the bigger picture. Having Grace go to the SH was not an easy decision, but the trauma that this has caused for Brother and Sister made it very obvious that we had to.
Brother and Sister are struggling with their feelings about all of this. They are sad and very much miss their sister. However they were very afraid of her. Everyone walked on eggshells when Grace was home. You never knew if you were going to say or do something that would set her off. I can't count how many times Brother and Sister would run to a neighbors house for safety. Brother was there the last day she was home and I got hit in the nose. He was so afraid that it was broken he couldn't calm down. He called the therapist hysterical. That is not good for anyone. Brother and Sister are so upset and traumatized that they aren't ready to talk to or see Grace. We know that they will get there. We are continuing to work with the therapist so that we can all heal and be ready when Grace comes home. In the mean time we enjoy the peace.
So far we really like the SH. The staff has been really nice and very helpful. They have put Grace in the adolescent unit. At first I was concerned about this. I asked why this had been done and they said because it is easier then trying to move her a few months down the road. They didn't want to get her use to the rules, staff, and kids in the younger unit to have to have her start over agin. Once they told us I agreed that this was for the best. We are still trying to figure out what she can and can't have with her. As with everything there is always a learning curve. One thing I love is that Grace has her own room. I was very worried about her sharing a room. They have constant supervision, but at Hogwarts Grace always told stories of things they talked about while in their beds at night. It is a lot harder to monitor kids at night. Hogwarts had 4 girls to a room. You can't always know what is going on or being said that way. I love how the school is structured at the SH. Grace is one of 9 kids in her class. School work is given to each kid to meet their needs. She will be able to work at her own pace. Grace is very smart so this is great for her. My only wish is that the SH was a little closer to our home. We realized how driving down to Hogwarts really affected Brother and Sisiter. They really missed out on so much. We are trying to be more mindful of them and their needs. Because of this we feel like we won't see Grace as much as we would like. As with everything we will do our best.
Update...
It has been way too long since I have posted. But I am back and plan to be better. So I will try to give an update and then move on.
Grace ended up staying at Hogwarts until February 28th, 2014. She came home because funding for her care ran out. We were hopeful however that she was better. She came home and we had a Therapist in place to help her transition. All seemed to be going well for awhile. She was still having some minor problems and we considered it to be the adjustment period. It was so wonderful to have her home and to be together as a family. We really treasured that time.
Unfortunately it was not to last. In April we really started to see old behaviors start to come back full force. The screaming, the anger, hitting, holes in walls, and new behaviors like cursing. Not my favorite!!! We kept trying to work with her and use our new skills and tried to get her to use hers. However nothing seemed to be working. On April 24th she was once again readmitted to an acute care facility. I felt like I had failed. After 9 days she was able to come back home. She immediately started to blow up again. Less than 24 hours after being home we took her to another facility. This one was not a hospital, but more of a cool down center.
After all of this, it was decided that Grace would go and live with with some good friends. The thought was she needs to be in a home, but maybe not ours. This was a very difficult decision but everyone felt it was for the best. We packed up Grace and moved her several hours away. At first it seemed like this could work, but it was short lived. Grace was adding so much stress and it was obvious that it was not good for anyone. So home she came after about 3 weeks. She lasted about 12 hours at home before she blew up again. We took her this time to a hospital closer to our house. We found out that they had a small unit for behavior health. We had never tried before because we thought there wouldn't be a bed available. Call it luck or divine intervention but she got in. She did well and we were very happy with the care she was getting. However we were getting nervous about what to do with her. We decided that the best option was to send Brother and Sister to stay with their Grandparents so that we could focus completely on Grace. We thought lets get Grace in a routine that works for her and then Work in the other kids. Everyone thought this was a good idea and it could work. That lasted one week. She had a blow up like we had never seen. She actually had to be taken to the hospital by ambulance. She was once again admitted to the hospital near our hame again. While she was at the hospital this time the treatment team felt that we had actually done everything that we could for her. They were now suggesting that Grace go to the State Hospital. This scared us so much. We felt like there had to be another way. We came up with one more plan to try and keep her in our home. After talking with her therapist and discussing the plan everyone thought it was worth one more chance.
This plan was in no way easy. However we tried to focus on all the good behaviors. We were trying to show Grace that we loved her and we wanted her to be in our home. We had a team of people from the therapy company in our home daily. They were there to help her not get to worked up and to help us parent better. Some days were great and some were awful. We just kept trying. We some how made it through the summer. Everyone thought if we could just get Grace back in school she would be ok. Finally the first day, week, month of school came. We could not have been more wrong.
After school started things got worse than ever. The blow ups were over nothing. Things like "Did you turn in your assignment?", "Did you clean your room?", "would you do the dishes?". Everything set her off. We still had help in the home and yet no one could keep her calm or us safe. During this time she threw a bottle and it hit her Dad in the face and gave him a cut the required 6 stitches. Four days later I was trying to hold her in a way we had be trained to do while she was punching and kicking. Well she got away from me and kicked me in the head and knocked me out. It was one of the very rare times I was all alone with her. For some reason I have been her target. Dad go home very soon after it happened and took me to the hospital. I had a concussion. Not fun!!! At this point it was becoming very difficult to have her at home. We had a small break because Dad and I took a week and went to New York City. My Mom came to stay with the kids while we were gone. Grace did ok that week. Mind you we had help from the therapist every waking moment of the day. Also Grace always has a honeymoon period. The day after we got home my mom left. Four hours after my Mom was gone Grace blew up again. We took Grace to the hospital and it was decided she needed to be admitted again. However there were no beds available until the next day. We waited in the ER over night for her to get the next bed. Grace spent the next week in the hospital. After Grace had given me the concussion we contacted DCFS. We had a very real safety risk at this point and didn't know what to do. We were trying to get Grace into what is know as a Professional Parenting home. This is someone who is highly trained to deal with kids just like Grace. DCFS gathered info from all of Grace's treatments and went before a review board. It was then decided on September 17th that Grace need to go to the state hospital. While Grace was being admitted she found out the plan for the state hospital and got angry and threw a box of crayons in my face. Thankfully it wasn't something bigger. After one week in the hospital the paper work was not processed and the state hospital had not admitted her yet. Insurance once again quit paying and we had no choice but to bring her home. That lasted one day, almost 24 hours exactly. She blew up and back she went again. This time is was a 20 hour wait in the ER for a bed. The day after Grace was admitted we found out she had been admitted to the state hospital. Once she found out she blew up everyday at the hospital. When she had been there the week before she had been a little angel. The staff was very surprised in the difference from one week to the next.
On Wednesday October 8th Grace was taken by ambulance the 85 miles to the State Hospital. It took us 5 hours of talking to her treatment team for her to be admitted. But it is finally done. She is now in their care.
The good news... Everyone that I have talked to who has know of a child who has gone there has said that the child came out and was wonderful. This gives me hope. If you know of a situation that is other wise, don't tell me!!! I have hope right now and I need it!!!!
Grace's treatment team right now are planning on her to be there 12 months. That seems so long, but if it works it is worth every minute. More about the hospital in another post.
Right now I ask for thoughts and prayers. This has been a very long and trying time for all of us. Thanks for reading!!
Grace ended up staying at Hogwarts until February 28th, 2014. She came home because funding for her care ran out. We were hopeful however that she was better. She came home and we had a Therapist in place to help her transition. All seemed to be going well for awhile. She was still having some minor problems and we considered it to be the adjustment period. It was so wonderful to have her home and to be together as a family. We really treasured that time.
Unfortunately it was not to last. In April we really started to see old behaviors start to come back full force. The screaming, the anger, hitting, holes in walls, and new behaviors like cursing. Not my favorite!!! We kept trying to work with her and use our new skills and tried to get her to use hers. However nothing seemed to be working. On April 24th she was once again readmitted to an acute care facility. I felt like I had failed. After 9 days she was able to come back home. She immediately started to blow up again. Less than 24 hours after being home we took her to another facility. This one was not a hospital, but more of a cool down center.
After all of this, it was decided that Grace would go and live with with some good friends. The thought was she needs to be in a home, but maybe not ours. This was a very difficult decision but everyone felt it was for the best. We packed up Grace and moved her several hours away. At first it seemed like this could work, but it was short lived. Grace was adding so much stress and it was obvious that it was not good for anyone. So home she came after about 3 weeks. She lasted about 12 hours at home before she blew up again. We took her this time to a hospital closer to our house. We found out that they had a small unit for behavior health. We had never tried before because we thought there wouldn't be a bed available. Call it luck or divine intervention but she got in. She did well and we were very happy with the care she was getting. However we were getting nervous about what to do with her. We decided that the best option was to send Brother and Sister to stay with their Grandparents so that we could focus completely on Grace. We thought lets get Grace in a routine that works for her and then Work in the other kids. Everyone thought this was a good idea and it could work. That lasted one week. She had a blow up like we had never seen. She actually had to be taken to the hospital by ambulance. She was once again admitted to the hospital near our hame again. While she was at the hospital this time the treatment team felt that we had actually done everything that we could for her. They were now suggesting that Grace go to the State Hospital. This scared us so much. We felt like there had to be another way. We came up with one more plan to try and keep her in our home. After talking with her therapist and discussing the plan everyone thought it was worth one more chance.
This plan was in no way easy. However we tried to focus on all the good behaviors. We were trying to show Grace that we loved her and we wanted her to be in our home. We had a team of people from the therapy company in our home daily. They were there to help her not get to worked up and to help us parent better. Some days were great and some were awful. We just kept trying. We some how made it through the summer. Everyone thought if we could just get Grace back in school she would be ok. Finally the first day, week, month of school came. We could not have been more wrong.
After school started things got worse than ever. The blow ups were over nothing. Things like "Did you turn in your assignment?", "Did you clean your room?", "would you do the dishes?". Everything set her off. We still had help in the home and yet no one could keep her calm or us safe. During this time she threw a bottle and it hit her Dad in the face and gave him a cut the required 6 stitches. Four days later I was trying to hold her in a way we had be trained to do while she was punching and kicking. Well she got away from me and kicked me in the head and knocked me out. It was one of the very rare times I was all alone with her. For some reason I have been her target. Dad go home very soon after it happened and took me to the hospital. I had a concussion. Not fun!!! At this point it was becoming very difficult to have her at home. We had a small break because Dad and I took a week and went to New York City. My Mom came to stay with the kids while we were gone. Grace did ok that week. Mind you we had help from the therapist every waking moment of the day. Also Grace always has a honeymoon period. The day after we got home my mom left. Four hours after my Mom was gone Grace blew up again. We took Grace to the hospital and it was decided she needed to be admitted again. However there were no beds available until the next day. We waited in the ER over night for her to get the next bed. Grace spent the next week in the hospital. After Grace had given me the concussion we contacted DCFS. We had a very real safety risk at this point and didn't know what to do. We were trying to get Grace into what is know as a Professional Parenting home. This is someone who is highly trained to deal with kids just like Grace. DCFS gathered info from all of Grace's treatments and went before a review board. It was then decided on September 17th that Grace need to go to the state hospital. While Grace was being admitted she found out the plan for the state hospital and got angry and threw a box of crayons in my face. Thankfully it wasn't something bigger. After one week in the hospital the paper work was not processed and the state hospital had not admitted her yet. Insurance once again quit paying and we had no choice but to bring her home. That lasted one day, almost 24 hours exactly. She blew up and back she went again. This time is was a 20 hour wait in the ER for a bed. The day after Grace was admitted we found out she had been admitted to the state hospital. Once she found out she blew up everyday at the hospital. When she had been there the week before she had been a little angel. The staff was very surprised in the difference from one week to the next.
On Wednesday October 8th Grace was taken by ambulance the 85 miles to the State Hospital. It took us 5 hours of talking to her treatment team for her to be admitted. But it is finally done. She is now in their care.
The good news... Everyone that I have talked to who has know of a child who has gone there has said that the child came out and was wonderful. This gives me hope. If you know of a situation that is other wise, don't tell me!!! I have hope right now and I need it!!!!
Grace's treatment team right now are planning on her to be there 12 months. That seems so long, but if it works it is worth every minute. More about the hospital in another post.
Right now I ask for thoughts and prayers. This has been a very long and trying time for all of us. Thanks for reading!!
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