Sometimes the best decisions and the hardest ones. Grace had a really hard week last week. She really struggled with following instructions and getting along with her peers. The decision had to be made for Christmas. It came down to three choices. One bring her home over night, visit her at the SH on Christmas Day, or Visit her on Christmas Eve.
1. Bring her home for an overnight visit. We were really excited to have this happen. She had been doing great and we all hoped that this would be what would happen. Once we found out she had been having problems we all knew this was in jeopardy. I went down for Grace's monthly staffing meeting to talk about her treatment over the last month. Her team said if we wanted we could still have her over night. Here is where I will sound like the bad guy. I had some very big concerns. Since Grace went into the hospital before being moved to the SH we have only had on site visits with the exception of one off campus visit the day after Thanksgiving. All of our visits have gone well, but they have been short in comparison. Our concerns are that we live over an hour away and if she had any problems we would have no back up. Our only choice would be to call the police. That would be a great lasting memory for Christmas!! Dad said it best when he said Christmas is already an emotional time, weather good or bad its still emotional. Did we really want her very first home visit to be on such a crazy day? Also Brother and Sister and even Me (Mom) are still very guarded with Grace. Before Grace went to the SH everyone walked on eggshells all the time. I don't see her first being much different. Brother and Sister are finally doing really well. Brother has brought all of his grades back up and we finally have a nice calm in our home. If we bring Grace home and she blows up what will that do to Brother and Sister? These were very real concerns. Once I was talking to Grace's treatment team they agreed that these were valid concerns. Finally I asked her team, "If it wasn't Christmas would anyone at this table suggest that Grace is ready for a home visit?" Everyone answered NO!! That had to be our answer. I just cried. I can't imagine waking up to open presents on Christmas morning with out all of my children there.
2. Visit Grace on Christmas day. This was also an option. They even said we could pick her up and do another off grounds visit. My concern was finding somewhere to go on Christmas day would not be easy. Pretty much it would be going to a movie. I don't know if you have ever gone to the movies on Christmas but it is so busy. I didn't think that was a good option. Plus it would mean 3 hours of traveling on Christmas day for All of us. I don't know about you but Brother and Sister weren't very excited to travel that much on Christmas. Also we found out that Grace will be getting Christmas gifts there at the hospital. The staff said it is a really fun day for the kids. Grace was excited once she found that out. Twice as many Christmas gifts. Little turkey.
3. We have decided that the best option is to go and visit Grace for Christmas eve. We will give her all her Christmas gifts and watch her open them. We will open our gifts from her. We will read all our traditional Christmas stories and enjoy as many of our traditions as possible.
The thought of not having Grace home for Christmas is killing me. However I am having to look at the bigger picture. If this was any other time of year this wouldn't even be a choice we would have to make. I am also trying to think of her treatment. I feel like bringing her home right now would be setting her up to fail. I don't think that is fair to her either. I am willing to miss this Christmas if it means she is getting well. I hope that this will be the only Christmas we have to miss for many more years. I hate being the responsible adult right now. It means making the hard decisions and seeming like the bad guy. I know that some people reading this will not agree with or understand the choice that we have made. I only ask that you don't judge. We are in a place that I hope no one else will ever have to be. The choices we are having to make don't just affect Grace but I am having to protect and think of two other children. I know Grace is getting the bast care available for her. I have to fight for Brother and Sister right now.
I hope everyone has a very Merry Christmas and a happy New Year!!!
for the Love of Grace
My Beautiful Grace
Thursday, December 18, 2014
Friday, December 12, 2014
Holidays...
The holidays can be a magical wonderful time or a crazy frenzied stressful time and if you're me some of both. I have to say that this year has been much easier than last year. I was the Grinch last year. I didn't even want to decorate the tree. Last year I kept telling myself "Grace will only be gone one Christmas. By this time next year she will be back and better and we will be able to move on."
The reality is she is gone again and I don't know if she will be back and better by next Christmas. I am okay with that right now.
First I will do a quick update, then I'll share some other thoughts. As of right now Grace is doing pretty well. She still has good and bad days. She gets into trouble every now and then and looses her level and has to start all over. There have been some pretty big issues in her unit and the staff have been required to talk to the whole unit. Some of the conversations are things that I wish Grace didn't have to be involved in. Grace called me upset over the discussion, I just had to say I'm sorry I can't protect you. This is real life. I told her if she was at home I could protect her, but her choices have made it so she has to be there. It is really hard to be compassionate but realistic at the same time. I still don't know how much of this is in her control and I hate not knowing that. Over all she has adjusted well and most days is happy and chipper. We were able to go pick her up the day after Thanksgiving for a off campus visit. We took Grace to see Big Hero 6 and then to dinner. We spent about five hours with her. It was so much fun. She was so calm and sweet the whole time. In fact Brother and Sister started to argue a bit and Grace pointed out a better way for them to handle it. That made Dad and I giggle a bit. It was really neat to see a small change. I am also happy to say when it was time to say good bye there was no drama or tears, from anyone. It was hopefully a look into what the future may hold for our family. I love looking back on that day. As of right now Grace is working hard to be on her best behavior to hopefully earn an overnight visit for Christmas. Shopping for Grace for Christmas has also been very difficult. She is so limited in what she can have at the SH. We have gotten creative and have been able to find a few nice things that she will enjoy. I think she would be happy with socks and nothing else as long as she is at home. I have been really holding onto hope that she can come home for Christmas. It will be the first time that she will be home in 3 months. It seems like so long ago that she left. I can't believe how much different life seems now. We have settled into a routine and Brother and Sister and for the most part doing better. I (mom) had to have an emergency Gallbladder surgery, and Dad had to have Stage 0 Melanoma In Situ removed. Other then that we are doing pretty well.
Getting through the holidays with Grace gone last year seemed so overwhelming. I know that someday our children will grow up and leave home. I know that they won't always be able to come home for Christmas. I've know that since the day they were born. I just never thought I wouldn't have to deal with this fact with a child so young. The hardest part is trying to make things as normal as possible for Brother and Sister. My biggest fear is that someday Brother and Sister will resent everything they have gone trough because of Grace. I think this makes me a little over protective of them right now. I have bent over backwards to allow them to continue to do the things that they want to do. Sometimes then I fear that Grace will resent them for all the great things that they have done as well. I think I might worry too much!!! I guess that makes me a Mom!!!
Many people have asked us if there is anything they can do to help? Or if they can get anything for Grace? Here is what I have come up with for now. If you feel like getting her something message me and we can work out details on how to get it to her. Thank you everyone for your continued love and support. It means the world to us!!!
Items
Coloring books (She loves fashion)
Sketch pad (no spiral bound)
Shampoo
Conditioner
Chapstick
Stationary
Lipgloss (no glass or metal)
Books (7-8th grade reading level)
Socks ( the crazier the better)
Letters or post cards. (please send to home address, mail takes forever at SH)
The reality is she is gone again and I don't know if she will be back and better by next Christmas. I am okay with that right now.
First I will do a quick update, then I'll share some other thoughts. As of right now Grace is doing pretty well. She still has good and bad days. She gets into trouble every now and then and looses her level and has to start all over. There have been some pretty big issues in her unit and the staff have been required to talk to the whole unit. Some of the conversations are things that I wish Grace didn't have to be involved in. Grace called me upset over the discussion, I just had to say I'm sorry I can't protect you. This is real life. I told her if she was at home I could protect her, but her choices have made it so she has to be there. It is really hard to be compassionate but realistic at the same time. I still don't know how much of this is in her control and I hate not knowing that. Over all she has adjusted well and most days is happy and chipper. We were able to go pick her up the day after Thanksgiving for a off campus visit. We took Grace to see Big Hero 6 and then to dinner. We spent about five hours with her. It was so much fun. She was so calm and sweet the whole time. In fact Brother and Sister started to argue a bit and Grace pointed out a better way for them to handle it. That made Dad and I giggle a bit. It was really neat to see a small change. I am also happy to say when it was time to say good bye there was no drama or tears, from anyone. It was hopefully a look into what the future may hold for our family. I love looking back on that day. As of right now Grace is working hard to be on her best behavior to hopefully earn an overnight visit for Christmas. Shopping for Grace for Christmas has also been very difficult. She is so limited in what she can have at the SH. We have gotten creative and have been able to find a few nice things that she will enjoy. I think she would be happy with socks and nothing else as long as she is at home. I have been really holding onto hope that she can come home for Christmas. It will be the first time that she will be home in 3 months. It seems like so long ago that she left. I can't believe how much different life seems now. We have settled into a routine and Brother and Sister and for the most part doing better. I (mom) had to have an emergency Gallbladder surgery, and Dad had to have Stage 0 Melanoma In Situ removed. Other then that we are doing pretty well.
Getting through the holidays with Grace gone last year seemed so overwhelming. I know that someday our children will grow up and leave home. I know that they won't always be able to come home for Christmas. I've know that since the day they were born. I just never thought I wouldn't have to deal with this fact with a child so young. The hardest part is trying to make things as normal as possible for Brother and Sister. My biggest fear is that someday Brother and Sister will resent everything they have gone trough because of Grace. I think this makes me a little over protective of them right now. I have bent over backwards to allow them to continue to do the things that they want to do. Sometimes then I fear that Grace will resent them for all the great things that they have done as well. I think I might worry too much!!! I guess that makes me a Mom!!!
Many people have asked us if there is anything they can do to help? Or if they can get anything for Grace? Here is what I have come up with for now. If you feel like getting her something message me and we can work out details on how to get it to her. Thank you everyone for your continued love and support. It means the world to us!!!
Items
Coloring books (She loves fashion)
Sketch pad (no spiral bound)
Shampoo
Conditioner
Chapstick
Stationary
Lipgloss (no glass or metal)
Books (7-8th grade reading level)
Socks ( the crazier the better)
Letters or post cards. (please send to home address, mail takes forever at SH)
Wednesday, November 5, 2014
Finding our new normal
We are trying to find our new normal. Knowing that Grace will be gone for a year means we have to keep living too. In order to be fair for Brother and Sister there has to be structure and routine. I can tell you this has all taken a very big toll on them emotionally and mentally. They have seem things that has affected them tremendously. We are working to find our groove as a family of four. It is such a balance because we know Grace is still a part of our family but not our day t day lives. It is really weird. I am grateful that Brother and Sister always remember her in their prays. It is very sweet. Sister yesterday had a little break down at school. She really misses Grace. She was her playmate and friend. Sister is a little lost right now. We are working really hard to help both kids find their way through all of this. The best thing I think we are doing is continuing to work with our therapist. It seems to be helping all of us.
As for how Grace is doing at the SH, overall she seems to be adjusting well. She still loves school as she always has. Her teacher has called and told me how much Grace loves math and how focused she is on her studies. I love to hear that. Grace has had several outbursts. She gets very emotional when this happens. She usually calls me and tells me how it is everyone else that is causing her problems. The last time she had a blow up she called and said that I needed to come and get her. She said if I didn't then that meant I didn't love her and she would hate me forever. She tends to have a flair for the dramatics!!! I reassured her that me not coming to get her in no way meant that I didn't love her. I was keeping her there because I loved her enough to see her get the help she needed. She did not like that answer at all. She was only made for a day. The next day she started over and started working towards gaining her levels and privileges back. There are five levels on her behavior system. Red, Green 1-4. Red there are no privileges. It takes 24 hours and she can gain one level up every 24 hours after that. She seems to thrive on these systems. We actually had a behavior system in our home but it never worked as affectively. It is great to see her working hard to keep her level up.
October is also when Grace has her birthday, she turned 12. Dad, Brother, and Sister went to have a birthday dinner with Grace. Mom had to be out of town for a family emergency. I was so sad to miss seeing her on her Birthday. It is the first time that I have ever missed any of my kids birthdays. Sad day. Thank goodness for modern technology. Dad and I were able to Facetime while Grace opened her birthday gifts. Gifts were very hard to get for her. She is very limited in what she can have. She is allowed posters so we made several posters for her room. She loved them. Yay!! She did forgive me for missing her birthday thankfully. I had to promise a Mother daughter only visit.
Our visit was so wonderful!! It is visits like these that give me hope for coming home. We had so much fun. I brought her make-up since she can now wear make up as long as her level allows it. She is actually understanding on good days that she needs to be at the SH. Its visits like these that I live for.
Grace is working hard to overcome her problems. We are very happy with the help that Grace is getting. I am going to try to update the blog more. However I will be commuting back and for to help with my Grandma who is having some health problems. Right now there is not too much happening with her. I'll keep you posted!! Thanks for reading!
As for how Grace is doing at the SH, overall she seems to be adjusting well. She still loves school as she always has. Her teacher has called and told me how much Grace loves math and how focused she is on her studies. I love to hear that. Grace has had several outbursts. She gets very emotional when this happens. She usually calls me and tells me how it is everyone else that is causing her problems. The last time she had a blow up she called and said that I needed to come and get her. She said if I didn't then that meant I didn't love her and she would hate me forever. She tends to have a flair for the dramatics!!! I reassured her that me not coming to get her in no way meant that I didn't love her. I was keeping her there because I loved her enough to see her get the help she needed. She did not like that answer at all. She was only made for a day. The next day she started over and started working towards gaining her levels and privileges back. There are five levels on her behavior system. Red, Green 1-4. Red there are no privileges. It takes 24 hours and she can gain one level up every 24 hours after that. She seems to thrive on these systems. We actually had a behavior system in our home but it never worked as affectively. It is great to see her working hard to keep her level up.
October is also when Grace has her birthday, she turned 12. Dad, Brother, and Sister went to have a birthday dinner with Grace. Mom had to be out of town for a family emergency. I was so sad to miss seeing her on her Birthday. It is the first time that I have ever missed any of my kids birthdays. Sad day. Thank goodness for modern technology. Dad and I were able to Facetime while Grace opened her birthday gifts. Gifts were very hard to get for her. She is very limited in what she can have. She is allowed posters so we made several posters for her room. She loved them. Yay!! She did forgive me for missing her birthday thankfully. I had to promise a Mother daughter only visit.
Our visit was so wonderful!! It is visits like these that give me hope for coming home. We had so much fun. I brought her make-up since she can now wear make up as long as her level allows it. She is actually understanding on good days that she needs to be at the SH. Its visits like these that I live for.
Grace is working hard to overcome her problems. We are very happy with the help that Grace is getting. I am going to try to update the blog more. However I will be commuting back and for to help with my Grandma who is having some health problems. Right now there is not too much happening with her. I'll keep you posted!! Thanks for reading!
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!!
Thursday, October 17, 2013
Trying to keep it together
Some days are easier than others. I have been really sick this week. Most likely stress induced. I've had two migraines in 3 days. Not fun at all!!! I am trying so hard but feel completely inadequate. I hope this feeling goes away. I want to be strong for Grace and all my kids. They think they have come up with a diagnosis or multiple diagnosis really. I am struggling with there being more diagnosis then she has names. That just seems like more than any child or person really needs. I am just feeling really down today. I don't need to bring everyone else down.
On the bright side I am going to go get Grace to day for a 2 night visit. She came last weekend and she had a great visit. Last weekends good visit is making all of us looking forward to this visit even more. We are learning new tools to help Grace before she gets so upset that she completely blows up. Last weekend was the 3 week mark from her last major blow up. For the last six months she has had a blow up every three weeks like clock work. The fact that we made it past last week with out any major problems is a major victory. Doesn't mean she is ready to come home, but it defiantly gives us a lot of hope for the future. Here is hoping for the same for this visit.
Not to much else going on right now. I am dreading the next couple of months. Next week is Grace's 11th birthday. Then we go into the Holiday season. I am not sure how to handle the holidays with out her here. I want to make everything as nice and as normal as possible for Brother and Sister. It just will be weird with out all of my kids together. I am sure it will be much more difficult for her.
We are still trying to raise funds for Grace's care. Please if you are able, donate. Thanks for all of the love and support.
On the bright side I am going to go get Grace to day for a 2 night visit. She came last weekend and she had a great visit. Last weekends good visit is making all of us looking forward to this visit even more. We are learning new tools to help Grace before she gets so upset that she completely blows up. Last weekend was the 3 week mark from her last major blow up. For the last six months she has had a blow up every three weeks like clock work. The fact that we made it past last week with out any major problems is a major victory. Doesn't mean she is ready to come home, but it defiantly gives us a lot of hope for the future. Here is hoping for the same for this visit.
Not to much else going on right now. I am dreading the next couple of months. Next week is Grace's 11th birthday. Then we go into the Holiday season. I am not sure how to handle the holidays with out her here. I want to make everything as nice and as normal as possible for Brother and Sister. It just will be weird with out all of my kids together. I am sure it will be much more difficult for her.
We are still trying to raise funds for Grace's care. Please if you are able, donate. Thanks for all of the love and support.
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