Before becoming my grandchild's caregiver, I was the primary caregiver of both my parents, and a grandmother, in their last years. It would have been easier, had they lived in the same homes, but with the help of my daughter, we managed. Still, there were challenges, and that is putting it mildly. There were many things I lost along the way. But there were many things I gained as well. Here are some of the losses and gains that can come with enabling a loved one to remain in home and out of a hospital.
LOSSES:
My Job (and my rest):
Unfortunately in our society, like many families, our family fell through the cracks of in-home care eligibility. Senior citizens are often ineligible for full Medicaid coverage due to age and income. A social worker told me that this is because they have other options, namely Medicare. The only problem with this is that our local In-Home Health Services is a Medicaid based only service. For my mother, who suffered from the progressively debilitating disease, Huntington's Disease, the only options available to her were a state-run nursing home, or for me to quit my job and take care of her myself. In 2012, we had to make that choice and I chose to take care of my mother myself, which meant me losing my job. I had 18 months with Mom before she passed away. During this time, my grandchild moved in with us because of bullying and (unknown to us at the time) developing emotional and mental issues. Shortly before Mom passed away in March of 2014 I realized that I needed to ensure that I could support my grandchild, which would have been impossible on the limited income we would have after Mom's death, so I returned to work. By this time, I had the help of Hospice and family members, so that I could work. It meant me working the overnight shift at my outside job and then caring for Mom after work. I lost sleep, and lots of it. But I managed to learn to nap whenever I could and to sleep whenever Mom slept. Hospice also provided one week per month of respite care, which I utilized to get caught up on rest.
My Sanity:
While I was caring for my mother, my daughter was residing with and caring for my grandmother and my father. In Aug. of 2013, my grandmother had an UTI turn sepsis and passed away within a week's time afterwards. My mother followed seven months later. I struggled for over a month to maintain one home and supplement the income of the other home after both losses. This became impossible so we all ended up residing in my father's home. Three adults and two children in a three bedroom home, with an accumulation of four households of stuff. I loss my privacy. My daughter and I hit a rough patch and she ended up moving out. My oldest grandchild remained living with me and my ailing father. My grandchild's mental issues started really manifesting after the death of my mother. From Jan. 2015 to Jan 2016 she would end up requiring a total of five hospitalizations for her own protection. I didn't see this because I was also not realizing my own fragile mental and emotional stability. In the beginning of June 2015, I ended up switching jobs, which now required a commute of over an hour each way. By this time, we also had Hospice care for my father and he was able to take care of his own basic needs as well. However, in the middle of June, Dad's health took a turn for the worse and he ended up passing away on June 18 2015. My daughter put aside any differences she had with her mom and rushed back home to help. I managed to make it until Sept before I had my breakdown. I ended up staying in a psychiatric hospital for over a week. A struggle with a bad psychiatric reaction to medications prolonged my recovery, but I eventually started to heal. Which was a good thing because by this time we had to make the choice between 24hr home supervision or long-term residential hospitalization. So, even though I had quit my job during my breakdown and was still making my own recovery, I made the choice to take care of my grandchild.
My Car and Eventually My Home:
Here's the thing about buying a car on payments - you can get a great car when you can afford it. But if you lose your job, you lose your car. My car is currently sitting in the driveway, expired registration and canceled insurance, waiting repossession for nonpayment. My income is now $670/mo and my rent is $600/mo. Rent is paid up until June and I am uncertain what the future holds there. Because as of today, I am again a single "parent", raising two grandchildren with emotional needs. But one thing that I am certain of is that we will somehow make it. Which leads me to the gains. If you are still with me then read on, I promise it gets better.
GAINS:
The Gift of Time With Loved Ones:
I think that the biggest gift that I gained during the last 2 1/2 yrs is the time I had with my parents and grandmother. That is time that can not be replaced with any job, income, car, home, or any other "thing". And as difficult as they often were, they were good years. During the 18 months caring for Mom, I learned to smile and laugh during the hard times. She taught me all about "Sunshine and Light". Dad was a grump right up to the end. But I was always a "Daddy's Girl" and I wouldn't give up one moment of the time I had with him, grumpy or not. My grandmother was the same way, grumpy and just tired. I got to see both her and my father pass away with the peacefulness that they could not obtain in life.
Watching My Grandchild Heal at Home:
In January of this year, we were heartbroken to be told that my grandchild required long-term residential hospitalization. However, we were willing to do whatever it took to ensure this child's safety. We met with roadblock after roadblock on obtaining this care and I eventually wrote that letter to the White House, in frustration and desperation. But while multiple agencies were getting involved, as a result of that letter, I discovered that I could take care of her at home. That this could be done with professional support. I knew that it wouldn't be easy and would require a commitment from me more than even caring for my parents did. It was not a decision that I made lightly, but after watching her crisis team in action one day, I realized that it was the right decision for all of us. Since that time I have watched this child's progress with pride and hope that I didn't think would be possible just a mere 3-4 months ago. We did have one setback last week, involving minor self-harm (surface scratch type cutting) and falling behind on the home-based schooling, but we are back on track and feeling positive. Today, my grandchild and I handled a total of six buses just to get to and from a doctor's appointment. And we did okay. We know that we got this, even without a car, we can manage what needs to be done. We are starting to see signs of starting this struggle with the younger grandchild, but this time we are going into it with the lessons we have learned this past year. Hopefully, we will be able to prevent things from getting as bad this time around. Time will tell.
Insight:
This journey, especially that of being my grandchild's caregiver, has been one of constant insight and learning. I have learned that this isn't about politics, insurances, professional abilities. It is about us, here at home. It is about not relying on all those other factors to take care of this child, but relying on them to support our roles as caregiver. I have learned that we all have roles in life that some are better at than others and that an effective team works best by each of us taking the role we are best suited for. Apparently my best role is as primary caregiver. I consider myself the luckiest of all our team because while this role might be the most challenging, it is also the most rewarding. I have learned that we must be proactive in the making sure that our loved ones, especially our children, are receiving the care that they need. Waiting for help to come to you can cause even more harm. The help is there, but we must seek it. We must demand it, if need be. Regardless of the role we take on, we must be willing to make a commitment to ensure the safety and well being of those depending on us.
BOTTOM LINE:
I have lost "things", and still might lose more things. But I have gained so much more that are irreplaceable. Caregiving, whether for an elderly and dying parent, to a mentally ill grandchild, is more than just challenging. At times it is hell. But at the end of each day, to be able to go to bed knowing that your loved one has made it safely through another day, is a gift that is priceless beyond belief. I do not equate losses with sacrifices. I have sacrificed nothing that I cannot someday replace. I have gained everything that I could never reacquire.
So, if you ever ask me if it was worth it, please don't get offended if I laugh at how silly I find such a question. Worth it? All that and then some. And I wouldn't have it any other way.
Thursday, March 24, 2016
Saturday, March 19, 2016
A Letter FROM The President!......
An unexpected surprise in the mail today. I did not vote for this President, nor do I consider myself to be a member of his political party. But I can tell you that President Barack Obama has my gratitude for not just letting me know that my voice was heard, but for the joy and pride in my grandchild knowing that she matters - not only to us here at home, but to the President of the United States!
Dear Michelle:
Thank you for the message you sent me this past fall. I was struck by your granddaughter's story, and I asked my healthcare team to look into your family's situation. I hope that the information they provided was helpful and, more than anything, I want you to know that I'm listening.
For years, our mental health system has struggled to serve those who depend on it. And while my Administration is working hard to help increase mental health services and improve access to care through the Affordable Care Act, your daughter's experience shows we have more work to do. You're right that no mother should have to struggle to get the appropriate treatment her child needs and deserves, and I want you to know that as President--and as a father--I will keep fighting to ensure every family knows the peace of mind that comes with quality health care.
Again, thank you for your message. Please let your granddaughter know that I am rooting for her and that I admire the strength she has shown in the face of great challenges. I will keep you story in my thoughts in the days ahead.
Sincerely,
Barack Obama (signature)
Dear Michelle:
Thank you for the message you sent me this past fall. I was struck by your granddaughter's story, and I asked my healthcare team to look into your family's situation. I hope that the information they provided was helpful and, more than anything, I want you to know that I'm listening.
For years, our mental health system has struggled to serve those who depend on it. And while my Administration is working hard to help increase mental health services and improve access to care through the Affordable Care Act, your daughter's experience shows we have more work to do. You're right that no mother should have to struggle to get the appropriate treatment her child needs and deserves, and I want you to know that as President--and as a father--I will keep fighting to ensure every family knows the peace of mind that comes with quality health care.
Again, thank you for your message. Please let your granddaughter know that I am rooting for her and that I admire the strength she has shown in the face of great challenges. I will keep you story in my thoughts in the days ahead.
Sincerely,
Barack Obama (signature)
Thursday, March 10, 2016
Saying Goodbye.....
Goodbyes are never easy for any of us. They are especially difficult for a teenager who's mental health ailments includes severe separation anxiety. So, losing not just one of our support team members, but the one we dubbed our "Team Captain" has us all both saddened and nervous about the coming weeks. The thing is, he has been such a huge help to my grandchild in learning to cope and deal with that dreaded "F" word.... feelings, that we are also encouraged and hopeful about how she is going to handle this change in her treatment. Plus, she has her original primary clinician to step into the Team Captain spot now. Still, I feel like there is so much left unsaid by me. That is why this blog entry is dedicated and directed to our departing Team Captain. I hope that someday he is able to read it and know what a difference he made for us all. I won't mention anyone by name, without permission, so I will just call him "Captain", this one last day.
Well Captain, I wish that I could say that we only feel happiness in this opportunity that you have been given. You didn't go into details about your new job but you mentioned that you will be leading a new team, and I cannot imagine you doing less than excellent in such a position. But we, as humans, are often selfish people and while we really are happy for you, we are feeling sorry for ourselves.
When I reentered this journey that the kid is dealing with, I did so feeling frustrated and ready to take on anyone who stood in our way to providing the best care for her. I hadn't spoke to you but a few times so I didn't know what to expect. I didn't trust you or anyone else at that point, due to the frustration of feeling like we were fighting for her and against multiple agencies. It sure didn't feel like a cohesive team unit with one goal.
Then came the day of a complete crisis outburst. Yeah, you know what day I am talking about.... that Monday. For the first time ever, I felt so inadequate to be able to help this child. If you, or anyone else, said that she needed to be hospitalized at that moment, I would have signed whatever papers were necessary because I didn't believe that I was capable of providing the care she needed at home. But something great happened that day. I got to see you in action. I watched you deescalate the situation, not once but twice that day. I did not feel like we were facing this alone. And for the first time, I felt the support that was available for not just this child, but for us as well. By the end of the day, with her still blessedly at home, I knew that we could do this. Not by ourselves, but by utilizing the support that you and the entire agency was ready to give at a moments notice.
Since then, I saw an entire fractured team come together. Finally, it was a multi-agency unit working towards as a single unit. You helped to give us all the confidence in our own voices. You encouraged this kid to use her voice - to speak up, to speak out, with confidence of having the support backing her. It felt so reassuring to know that walking into any group meeting, we had "back up". You and I both agreed that it would be more useful to have one person coordinating all the multiple agencies and people involved in her care. I knew immediately that I wanted you to be our "Team Captain", and everyone else in this family agreed.
When you started out with us, you stepped immediately into an angry confrontational verbal outburst from a child fed up with her life and everything happening around her. You allowed those outbursts and encouraged her to express herself so. And then, you began to help her learn to express herself in other healthier ways. You insisted on her safety when she was at risk, and acknowledged her being able to get things back (such as strings of lights) when she earned that right by staying safe and free from self-harm. You have advised, encouraged when needed and discouraged when needed as well. You never gave up on her, no matter how much verbal abuse she used to try to get you to back off. And I have watched it all so that I might learn by example.
You didn't just gain this grandmother's respect, you gained my gratitude. I was able to step into the role of guardian and care provider with more confidence and reassurance than I would have been able to without your support. And I will be able to continue that role with skills I have been learning by your example, and will continue to learn by the examples of the rest of her support team. I don't trust easily, but you earned my trust and my respect, which helped me to see my role and duties in being a part of a team.
When her original clinician came back from leave, you didn't step down but rather stepped aside so that you could both work together as co-clinicians. This prevented our child from having to choose between either of you, and you have no idea how much that was appreciated by us. We didn't know at the time that it would work out to ease this transition she is now facing with you leaving. I cannot imagine what that would have been like without your foresight. And I know that our new Team Captain is going to do just as well. But without you leading the way in my part of it, I might not have had that confidence so soon.
Goodbye "Captain", and thank you for all that you have done for us and families like ours. You make a difference and you are more appreciated than you realize.
Well Captain, I wish that I could say that we only feel happiness in this opportunity that you have been given. You didn't go into details about your new job but you mentioned that you will be leading a new team, and I cannot imagine you doing less than excellent in such a position. But we, as humans, are often selfish people and while we really are happy for you, we are feeling sorry for ourselves.
When I reentered this journey that the kid is dealing with, I did so feeling frustrated and ready to take on anyone who stood in our way to providing the best care for her. I hadn't spoke to you but a few times so I didn't know what to expect. I didn't trust you or anyone else at that point, due to the frustration of feeling like we were fighting for her and against multiple agencies. It sure didn't feel like a cohesive team unit with one goal.
Then came the day of a complete crisis outburst. Yeah, you know what day I am talking about.... that Monday. For the first time ever, I felt so inadequate to be able to help this child. If you, or anyone else, said that she needed to be hospitalized at that moment, I would have signed whatever papers were necessary because I didn't believe that I was capable of providing the care she needed at home. But something great happened that day. I got to see you in action. I watched you deescalate the situation, not once but twice that day. I did not feel like we were facing this alone. And for the first time, I felt the support that was available for not just this child, but for us as well. By the end of the day, with her still blessedly at home, I knew that we could do this. Not by ourselves, but by utilizing the support that you and the entire agency was ready to give at a moments notice.
Since then, I saw an entire fractured team come together. Finally, it was a multi-agency unit working towards as a single unit. You helped to give us all the confidence in our own voices. You encouraged this kid to use her voice - to speak up, to speak out, with confidence of having the support backing her. It felt so reassuring to know that walking into any group meeting, we had "back up". You and I both agreed that it would be more useful to have one person coordinating all the multiple agencies and people involved in her care. I knew immediately that I wanted you to be our "Team Captain", and everyone else in this family agreed.
When you started out with us, you stepped immediately into an angry confrontational verbal outburst from a child fed up with her life and everything happening around her. You allowed those outbursts and encouraged her to express herself so. And then, you began to help her learn to express herself in other healthier ways. You insisted on her safety when she was at risk, and acknowledged her being able to get things back (such as strings of lights) when she earned that right by staying safe and free from self-harm. You have advised, encouraged when needed and discouraged when needed as well. You never gave up on her, no matter how much verbal abuse she used to try to get you to back off. And I have watched it all so that I might learn by example.
You didn't just gain this grandmother's respect, you gained my gratitude. I was able to step into the role of guardian and care provider with more confidence and reassurance than I would have been able to without your support. And I will be able to continue that role with skills I have been learning by your example, and will continue to learn by the examples of the rest of her support team. I don't trust easily, but you earned my trust and my respect, which helped me to see my role and duties in being a part of a team.
When her original clinician came back from leave, you didn't step down but rather stepped aside so that you could both work together as co-clinicians. This prevented our child from having to choose between either of you, and you have no idea how much that was appreciated by us. We didn't know at the time that it would work out to ease this transition she is now facing with you leaving. I cannot imagine what that would have been like without your foresight. And I know that our new Team Captain is going to do just as well. But without you leading the way in my part of it, I might not have had that confidence so soon.
Goodbye "Captain", and thank you for all that you have done for us and families like ours. You make a difference and you are more appreciated than you realize.
Monday, February 15, 2016
How We Are Doing..and How We Can Help You Too...
We have great personal news to report...... No new episodes or changes! Things are going great just by being normal. Yup, normal highs and lows. We continue to make steady progress in getting in learning how to deal with a wide range of emotions in an appropriate manner and what many people consider "normal" expressions and coping skills. We have had moments of happiness, sadness, irritability, frustration, silliness, bitterness, disappointments, pleasant surprises, anger, and even a moment of terror that we were afraid would cause a set back. And best of all, we dealt with them all sanely, not always calmly but with no outbursts. The strands of lights get to go back up on the walls, with the thumbtacks holding them up.
How did we get to this point? Constant determination, support, love, structured routines, affirmations, reassurances, and encouragement. We refused to give up. We refused to back down. We refused to take a break. We refused to give up hope. We stayed proactive. We adapted and made changes to what emphasize what worked and get past what didn't work. We built on our individual strengths to try to be the strongest combined unit.
Are we "cured"? Have we beat these problems? Have we prevented them from ever happening again. No, not by a long shot. But we are in this for the long haul. And each month we go without a crisis, without imminent fear of self-harm is another closer to making it a year. Each year will bring us closer to achieving that dream of a long, healthy life.
So, that is where we are at today with our personal news. On a subject that is also personal to us, but involves other people - we feel like we are making a small difference in helping others. We have one mom who was encouraged to trust her instincts and simply given a single phone number to help her find the resources she believed she needed. Since then, she has discovered heartbreaking information but is able to seek the help she already knew she needed. We will continue to keep mom and family in our thoughts and prayers while she begins her own difficult journey. And we will be available to help her find whatever resources she needs, if she has any further difficulties on finding them. I doubt that she will need much help, she is a tough cookie and is already getting the help for her child that is needed.
Another mom needed help finding an agency near her to assist with a situation in her home. We helped locate the appropriate agency and looked up some laws pertaining to her situation. We were able to help her get started on getting this situation resolved in the quickest manner legally possible. That situation should be on its way to being a part of her past by the end of this month.
So, with all of this tooting our own horn, just what did we do - very little actually. But sometimes, it is the very little assistance that we need the most to get started. Both of these moms are very capable women and were able to pursue the actions that they needed to take. But both are busy moms and in the middle of dealing with issues that makes trying to figure out where to turn to get started a struggle all by itself.
Those "very little" moments of assistance is what we are able to do best. It takes just a moment of our time and it is what we want to do. It costs us nothing, and we don't charge anything for simply helping another mom (or dad someday) out. I cannot think of a single act of assistance that we would ever need to charge for. We are not professionals running a business. We are simply a family who has struggled and wants to help other families from struggling any more than necessary. That kind of assistance should never come with a price tag.
So, if you or someone you know, needs some free assistance - looking up resources in your area, writing a letter, finding local agencies, or simply someone to listen to you - send us a message. We are here for you and we will be glad to help.
How did we get to this point? Constant determination, support, love, structured routines, affirmations, reassurances, and encouragement. We refused to give up. We refused to back down. We refused to take a break. We refused to give up hope. We stayed proactive. We adapted and made changes to what emphasize what worked and get past what didn't work. We built on our individual strengths to try to be the strongest combined unit.
Are we "cured"? Have we beat these problems? Have we prevented them from ever happening again. No, not by a long shot. But we are in this for the long haul. And each month we go without a crisis, without imminent fear of self-harm is another closer to making it a year. Each year will bring us closer to achieving that dream of a long, healthy life.
So, that is where we are at today with our personal news. On a subject that is also personal to us, but involves other people - we feel like we are making a small difference in helping others. We have one mom who was encouraged to trust her instincts and simply given a single phone number to help her find the resources she believed she needed. Since then, she has discovered heartbreaking information but is able to seek the help she already knew she needed. We will continue to keep mom and family in our thoughts and prayers while she begins her own difficult journey. And we will be available to help her find whatever resources she needs, if she has any further difficulties on finding them. I doubt that she will need much help, she is a tough cookie and is already getting the help for her child that is needed.
Another mom needed help finding an agency near her to assist with a situation in her home. We helped locate the appropriate agency and looked up some laws pertaining to her situation. We were able to help her get started on getting this situation resolved in the quickest manner legally possible. That situation should be on its way to being a part of her past by the end of this month.
So, with all of this tooting our own horn, just what did we do - very little actually. But sometimes, it is the very little assistance that we need the most to get started. Both of these moms are very capable women and were able to pursue the actions that they needed to take. But both are busy moms and in the middle of dealing with issues that makes trying to figure out where to turn to get started a struggle all by itself.
Those "very little" moments of assistance is what we are able to do best. It takes just a moment of our time and it is what we want to do. It costs us nothing, and we don't charge anything for simply helping another mom (or dad someday) out. I cannot think of a single act of assistance that we would ever need to charge for. We are not professionals running a business. We are simply a family who has struggled and wants to help other families from struggling any more than necessary. That kind of assistance should never come with a price tag.
So, if you or someone you know, needs some free assistance - looking up resources in your area, writing a letter, finding local agencies, or simply someone to listen to you - send us a message. We are here for you and we will be glad to help.
Monday, February 8, 2016
This Is What We Do........
This past week we were able to help out a mother who has found herself, and her family, in an emotionally toxic home environment. Sadly, she feels that this is being caused by her own mother, the children's grandmother, who also is residing in the home and refusing to leave. The children's mom now has a court date scheduled to have this remedied and is greatly relieved to feel that there is some end to emotional harm that is happening to her children.
So what did we do to help this situation? Very little actually. We spoke further to gather as much information as we could, so that we could best help her. We discovered that she was having difficulty with finding agency numbers to contact in the area she lived in (this we discovered being due to agencies covering multiple counties). We started an immediate search into locating appropriate agencies and provided that information to her. Then, after these agencies agreed upon the most obvious course of action, we dug into the state laws and how best to proceed. We passed on all information to her, so that she could proceed to do what she needed to do for her family.
What we didn't do... we did not try to resolve matters ourselves. We are neither trained nor licensed to provide any legal, medical, or counseling assistance. But we do have some skill in online research and are able to help point people in the right direction. We don't charge any fees, we don't ask for any donations. We have the time and ability to provide simple assistance in helping families help themselves. That is what we do. That is what we look forward to doing on a larger scale. Provide simple assistance, be it looking up agency numbers, information on how to proceed legally, writing letters, lending an ear, or simply asking others for advice. Someday, we hope to have a network of other volunteers, ready to help families find the resources that they need for their children.
This is what we do.... and it felt good being able to do it.
So what did we do to help this situation? Very little actually. We spoke further to gather as much information as we could, so that we could best help her. We discovered that she was having difficulty with finding agency numbers to contact in the area she lived in (this we discovered being due to agencies covering multiple counties). We started an immediate search into locating appropriate agencies and provided that information to her. Then, after these agencies agreed upon the most obvious course of action, we dug into the state laws and how best to proceed. We passed on all information to her, so that she could proceed to do what she needed to do for her family.
What we didn't do... we did not try to resolve matters ourselves. We are neither trained nor licensed to provide any legal, medical, or counseling assistance. But we do have some skill in online research and are able to help point people in the right direction. We don't charge any fees, we don't ask for any donations. We have the time and ability to provide simple assistance in helping families help themselves. That is what we do. That is what we look forward to doing on a larger scale. Provide simple assistance, be it looking up agency numbers, information on how to proceed legally, writing letters, lending an ear, or simply asking others for advice. Someday, we hope to have a network of other volunteers, ready to help families find the resources that they need for their children.
This is what we do.... and it felt good being able to do it.
Wednesday, February 3, 2016
A Cry For Help....Can You Help This Family?
An Indiana mother needs help in how to protect her children's emotional and mental well being, from their own grandmother whom is currently living in their home. There has been a long family history of abandonment (when the mother was 10 years old), previous alcoholism, and a belief of current prescription drug addiction. There have been reconciliations during the better times, and an attempt at forming relationships that were previously shattered, which is what lead to the grandmother residing in the home after years of dysfunction. Her daughter believed that her mother had changed and for the sake of her children, allowed her back into her life and tried to help her out. She realizes now that it was a mistake and for the sake of her children, her mother needs to find somewhere else to live. But her mother refuses to leave, makes threats to call Adult Protective Services on her daughter for such things as not driving 0.2 miles to get a soda pop, and snubs the older children for not "being on her side".
This is adversely affecting all four of the children in the home. But even worse, there is a teenage son in the home, who has suffered for years from emotional and mental issues. His therapist agrees that the grandmother is causing him setbacks in all of his progress and hindering future progress. This child has fought a long road of residential care and intensive therapy to reach the progress he has made, and it is threatening to become undone because of the toxic environment his grandmother is creating.
This mother doesn't know where to turn and needs our help. Current laws in many states would involve removing the children (if they are at risk) until the offending adult is removed. But how is a mother able to have an emotionally harmful person removed for her children's sake? The grandmother is 56 years old, able to care for herself, and do everything but drive (due to her previous DUI convictions). The children's mother is doing everything she can to keep the emotional environment stable for her children. But this family is being held emotionally hostage in their own home but the selfish behavior of one person who refuses to leave.
Please, if you know of any agencies the mother can turn to for help, have any advice on how to proceed in the best way for her children, or have ever faced or know someone who has faced a similar situation - please, contact me. While I am omitting this family's names and information for privacy reasons, the children's mother is more than willing to talk to anyone directly, who might be able to help her help her children.
This is adversely affecting all four of the children in the home. But even worse, there is a teenage son in the home, who has suffered for years from emotional and mental issues. His therapist agrees that the grandmother is causing him setbacks in all of his progress and hindering future progress. This child has fought a long road of residential care and intensive therapy to reach the progress he has made, and it is threatening to become undone because of the toxic environment his grandmother is creating.
This mother doesn't know where to turn and needs our help. Current laws in many states would involve removing the children (if they are at risk) until the offending adult is removed. But how is a mother able to have an emotionally harmful person removed for her children's sake? The grandmother is 56 years old, able to care for herself, and do everything but drive (due to her previous DUI convictions). The children's mother is doing everything she can to keep the emotional environment stable for her children. But this family is being held emotionally hostage in their own home but the selfish behavior of one person who refuses to leave.
Please, if you know of any agencies the mother can turn to for help, have any advice on how to proceed in the best way for her children, or have ever faced or know someone who has faced a similar situation - please, contact me. While I am omitting this family's names and information for privacy reasons, the children's mother is more than willing to talk to anyone directly, who might be able to help her help her children.
Thursday, January 28, 2016
This Week So Far (01/24/16 - 01/28/16).........
This has been a week of highs, lows and everything in between. We had to put our dog to sleep at the end of last week, so the adjustment of losing another beloved family member has been a big low point in our lives. However, it has been handled with sadness, of course, but without any crisis moments. That is huge progress for us, and one that we are very encouraged about.
Home schooling has officially started for our teen. She has a teacher come out to the house each day and give her assignments, as well as help tutor her with any areas she needs more detailed instructions. Initially, this caused me some anxiety, but only because of my nervousness over having people I don't know in my home. Still, it is needed to prevent our child from falling further behind than she already is. And it is the best thing that has happened, as far as her educational needs, in a very long time. She has a good rapport with her teacher. He is very caring and patient, but doesn't let her slack off either. A perfect balance for her. On the very same day that I was struggling to make her get motivated and get some of her assignments done, he managed to get her to complete 3-4 times the amount of work (in the same amount of time) than I had, simply by using patience while encouraging her yet with no acceptance of easing up. With his help, I can see her getting caught up on all of her credits, as she finishes out this school year in this way, as well as looking forward to eventually earning her diploma, instead of dropping out as soon as she is old enough (which had become her determined goal, much to our sadness).
We got involved in a gathering of other families, for a monthly "retreat". We are not well experienced with socializing, so a couple of us were anxious about being in a social group setting for two hours. One of the kids was very uncomfortable in the crowded kids group and either hung out with me in the adult group, or with one of her counselors in an empty office. But, by the end of the evening she too was engaging with her group. I think that we are all looking forward to the next event. I liked it so much that I found myself signing up for another group meeting for parents/guardians of elementary students in our school district.
We are also adjusting to even more new routines involving schooling and chores, and let me tell you that is typically a challenge for us all. It has been met with moments of frustration (mostly on my part), rebellion (of the normal standard of most children) and reluctant acquiescence. But, while it has been a rocky start, I can already see signs of improvement.
Like many families, this time of the month requires cooking creativity with a reduced food availability and ingredients, until we can replenish our groceries. This has been a definite "high point", as we are finding new favorite meals almost daily. I have even managed to create desserts, which hasn't been a regular feature of mealtimes in the past (but will be in the future!). We all look forward to mealtime, not just for the family togetherness we are discovering we love, but for the new budget creations.
So, what do we owe all of the positive changes to? It comes from an equal part of, on our part, being proactive, determination and commitment to our families healing - both individually and as a whole, and from the tremendous professional support that we are receiving. We have the support of multiple health agencies, State departments, and now the school as well. And I now believe that we likely have always had that support, or at least had the ability to receive it, but before it felt fractured and uneven. Now it feels like a huge multi-agency team, joining our family in providing the best course of action for our child's care.
It is wonderful to no longer feel like we are battling anyone for what is best for her, but working together to all mutually agree upon each stage of her care.
****Coming up... continual updates on our journey, as well as anything new that we find that can help other families achieve the level of support and resources that we now have****
Home schooling has officially started for our teen. She has a teacher come out to the house each day and give her assignments, as well as help tutor her with any areas she needs more detailed instructions. Initially, this caused me some anxiety, but only because of my nervousness over having people I don't know in my home. Still, it is needed to prevent our child from falling further behind than she already is. And it is the best thing that has happened, as far as her educational needs, in a very long time. She has a good rapport with her teacher. He is very caring and patient, but doesn't let her slack off either. A perfect balance for her. On the very same day that I was struggling to make her get motivated and get some of her assignments done, he managed to get her to complete 3-4 times the amount of work (in the same amount of time) than I had, simply by using patience while encouraging her yet with no acceptance of easing up. With his help, I can see her getting caught up on all of her credits, as she finishes out this school year in this way, as well as looking forward to eventually earning her diploma, instead of dropping out as soon as she is old enough (which had become her determined goal, much to our sadness).
We got involved in a gathering of other families, for a monthly "retreat". We are not well experienced with socializing, so a couple of us were anxious about being in a social group setting for two hours. One of the kids was very uncomfortable in the crowded kids group and either hung out with me in the adult group, or with one of her counselors in an empty office. But, by the end of the evening she too was engaging with her group. I think that we are all looking forward to the next event. I liked it so much that I found myself signing up for another group meeting for parents/guardians of elementary students in our school district.
We are also adjusting to even more new routines involving schooling and chores, and let me tell you that is typically a challenge for us all. It has been met with moments of frustration (mostly on my part), rebellion (of the normal standard of most children) and reluctant acquiescence. But, while it has been a rocky start, I can already see signs of improvement.
Like many families, this time of the month requires cooking creativity with a reduced food availability and ingredients, until we can replenish our groceries. This has been a definite "high point", as we are finding new favorite meals almost daily. I have even managed to create desserts, which hasn't been a regular feature of mealtimes in the past (but will be in the future!). We all look forward to mealtime, not just for the family togetherness we are discovering we love, but for the new budget creations.
So, what do we owe all of the positive changes to? It comes from an equal part of, on our part, being proactive, determination and commitment to our families healing - both individually and as a whole, and from the tremendous professional support that we are receiving. We have the support of multiple health agencies, State departments, and now the school as well. And I now believe that we likely have always had that support, or at least had the ability to receive it, but before it felt fractured and uneven. Now it feels like a huge multi-agency team, joining our family in providing the best course of action for our child's care.
It is wonderful to no longer feel like we are battling anyone for what is best for her, but working together to all mutually agree upon each stage of her care.
****Coming up... continual updates on our journey, as well as anything new that we find that can help other families achieve the level of support and resources that we now have****
Sunday, January 24, 2016
Facing Off Against the School, And Why This Bothers Me.....
Tomorrow we have an IEP (Individualized Educational Plan) to confirm my granddaughter's "Home and Hospital" home studies. I say "confirm" because her doctor has already sent in the recommendation for this. So why are we feeling like we are "facing off against the school"? Because of the perceived (or real?) attitudes we feel we have already faced. When a parent is told that their child is believed to be "just manipulating her mother" that leads the parent to believe that this staff does not feel her child's illness is real. When a parent is told that two self-admitted suicide attempts are "not counted, because they were undocumented by medical professionals", that leads the parent to believe that this staff does not recognize the seriousness of her child's illness. When a parent is told that her child has two options - either "test out" (take a proficiency test) or be transferred to a continuation school (where many juvenile offenders are placed as well), that leads the parent to believe that the school is only interested in getting "head count" credit (and funding) or getting her child off of their hands. When a parent is threatened with being taken to court because her child is not in school, due to the extreme emotional trigger it was causing and with professional approval, and told that the doctor's recommendation "doesn't exist because they have yet to receive it", that leads the parent to feel that she is fighting against an agency for her child's education, who's job legally is to provide her child that education.
Even the psychiatric professionals, whom are directly involved in my granddaughter's care, have expressed concern, irritation, and/or shock at the things our child's school staff have said. So, instead of looking forward to working together with her educational staff - we feel like we are going into another battle. Thankfully, we have the support of her crisis team, counselor's, and even state representatives that home studies is in her best interests. All, but the school, recognize that she has legitimate issues and that the classroom environment at that school has been detrimental to her mental and emotional well-being. Since she stopped attending, with the support of her family and professional team, there has been a noticeable improvement in her daily emotional state.
We do not discredit the importance of schooling. We have another child in the home who excels in her school and whom will remain attending a formal education in a classroom setting. This is important and there are no extenuating circumstances that would justify her not attending school.
However, when a school panel, who's job it is to see to the special needs of an individual student with physical and/or mental disabilities, fails to believe and/or adapt to that child's needs - then it is time to face off against them and demand action. We learned the hard way of not being proactive, of just accepting what we were told without a fight when we knew better. We will not be making that mistake again. I am beyond grateful that we now have the support and backing to continue fighting for my grandchild, when needed. Her health, be it mental or physical, is what is of most importance to us all. It would be nice to feel that we can get her back on track with her education, while still placing importance where it should be, instead of feeling like we are having to fight between the two priorities.
Hopefully, after tomorrow, we will all be on track with that goal.
FOLLOW UP - The meeting went as well as expected. I wasn't going to bring up any of the previously mentioned issues, but watching the school nurse's look of..... ? Anger? Irritation? Scorn? I don't really know what she was thinking, however I immediately knew that she was one of the ones claiming "manipulation" and other remarks discrediting my granddaughter's mental state, or minimizing it. I am glad that her crisis support team was there and found it faintly amusing (as well as disgusting) that suddenly everyone is so friendly and supportive. Now, I will work towards getting rid of this anger at a person, based on facial sneers, and just move forward.
I am learning more and more what not to accept though. And the potentially harmful attitudes of others, regardless of training and education, will not be accepted. I cannot stress enough the importance of being a proactive advocate for our children.
****Coming soon - we will be attending a parent-partner retreat tomorrow evening and will be receiving more resource information. I will be sharing all the resources I can get, as well as any helpful information I come across****
Even the psychiatric professionals, whom are directly involved in my granddaughter's care, have expressed concern, irritation, and/or shock at the things our child's school staff have said. So, instead of looking forward to working together with her educational staff - we feel like we are going into another battle. Thankfully, we have the support of her crisis team, counselor's, and even state representatives that home studies is in her best interests. All, but the school, recognize that she has legitimate issues and that the classroom environment at that school has been detrimental to her mental and emotional well-being. Since she stopped attending, with the support of her family and professional team, there has been a noticeable improvement in her daily emotional state.
We do not discredit the importance of schooling. We have another child in the home who excels in her school and whom will remain attending a formal education in a classroom setting. This is important and there are no extenuating circumstances that would justify her not attending school.
However, when a school panel, who's job it is to see to the special needs of an individual student with physical and/or mental disabilities, fails to believe and/or adapt to that child's needs - then it is time to face off against them and demand action. We learned the hard way of not being proactive, of just accepting what we were told without a fight when we knew better. We will not be making that mistake again. I am beyond grateful that we now have the support and backing to continue fighting for my grandchild, when needed. Her health, be it mental or physical, is what is of most importance to us all. It would be nice to feel that we can get her back on track with her education, while still placing importance where it should be, instead of feeling like we are having to fight between the two priorities.
Hopefully, after tomorrow, we will all be on track with that goal.
FOLLOW UP - The meeting went as well as expected. I wasn't going to bring up any of the previously mentioned issues, but watching the school nurse's look of..... ? Anger? Irritation? Scorn? I don't really know what she was thinking, however I immediately knew that she was one of the ones claiming "manipulation" and other remarks discrediting my granddaughter's mental state, or minimizing it. I am glad that her crisis support team was there and found it faintly amusing (as well as disgusting) that suddenly everyone is so friendly and supportive. Now, I will work towards getting rid of this anger at a person, based on facial sneers, and just move forward.
I am learning more and more what not to accept though. And the potentially harmful attitudes of others, regardless of training and education, will not be accepted. I cannot stress enough the importance of being a proactive advocate for our children.
****Coming soon - we will be attending a parent-partner retreat tomorrow evening and will be receiving more resource information. I will be sharing all the resources I can get, as well as any helpful information I come across****
Saturday, January 16, 2016
What keeping a self-harming child safe, at home, during crisis mode takes......
Not all kids who self-harm, ie; cutting, are at a conscious risk to themselves. In fact, most of the time they are NOT suicidal or trying to actually hurt themselves. It is a coping mechanism that parents often don't understand. When parents learn of it, they often panic and seek immediate help. No problem with that, it is a natural reaction. However, they are likely to be told that their child is not at risk to his/her self. Many might then choose to accept it as best as they can, albeit uncomfortably, and hope that it is a phase that their child will eventually tire of.
***Note - There is much to self-harming that I will not go into, because I am not a medical professional. If you do have a child who self-harms - do seek professional help so that your child can try to learn other methods of coping. ***
But what do we do when our self-harming child IS a risk to her self? During the crisis modes, so that our child is still able to be in the home, without the need for hospitalization?
1. Utilize our crisis support team
There are agencies who specialize in crisis evaluation in the home. While there may be times that our child is only safe in a hospital setting, not all crisis' need to result in that. With the help of professional crisis clinicians, we have the support in determining if our child requires hospitalization, before spending sometimes days in the ER waiting for psychiatric evaluations.
Our crisis team doesn't just come out in crisis moments, they also maintain regular home visits to help reduce things from reaching that point at all. We rely on our support team, and they rely on us - all for the common goal of helping our child.
2. Keeping harmful objects and "triggers" locked up.
It is important for us to remove certain things from our child's sight. In order for her professional team to feel safe about her being at home during crisis times, we must do our part to ensure her safety. And we must do so willingly. Removing everything from the walls, because we should no longer have push pins, nails, screws, etc. visibly showing and/or easily accessible, is NOT a sacrifice nor inconvenience. If that will help keep her here with us at home, versus being at a hospital, then we have no problem with it. In fact, I very happily removed everything myself. There isn't a single bit of decor that we would rather have in our home than our children.
Removing the items is only part of it though - it is imperative that these things be secured, either in a locked room or in a lock box. Currently, we have everything sharp (including kitchen knives, scissors, as well as the before mentioned wall hangers) locked up in my bedroom. My room is kept locked at all times that I am not in it. I carry the key with me at all times I am not in my room. I am not real satisfied with this current arrangement though, only because I don't like restricting access to any part of our home that I might be in from any of the children. To remedy this, I will be getting a lock box so that everything is secured and out of sight, without restricting her from coming into my room.
Some of the minor challenges to these safety measures are keeping constant vigil that sharp objects are immediately returned when needed to be used. It means coming up with alternative methods to hanging up decor. We are in the process of using double-sided tape and non-sharp hanging supplies. It is taking time and for now, most of the walls are bare, but her smile is much more beautiful than any painting or decor item.
3. Securing and administering medications.
Just as it is important for her safety to have all sharp items secured, it is additionally vital that we secure all medications. ALL medication that is in the home is also secured in my locked room. It is up to me to ensure that medication is given at required times, and doses. I cannot just hand them to her and walk away. I am now her nurse, when needed, as well as her guardian. It is my job to stand there and visually verify that she has taken the medication. I must say that she is really great about being understanding about this requirement.
It isn't just her medication that I must secure - it is the entire household medication. If you come into our home and you have medication and/or sharp objects in your purse and/or pockets - I am going to ask you to secure them in my room.
4. Staying up until the children are asleep
We have one teen and one elementary school child in the home. The teen is doing home studies and the younger child must up by 6:00am to get ready for school. The teen is rarely able to sleep right away and is up past 10:00am, I require my own quiet time while waking up before getting the younger one up, so am up by around 5:00am. This makes for short nights and long days. Too much of this can render me exhausted and less effective at ensuring our child's safety. It is up to me to make sure that I have a break, if needed, to take advantage of the days when we don't have to be up early and give myself those extra couple of hours of sleep. Because I MUST be the last one to bed, if I am to ensure the safety of our child here in the home. I can nap, but not in my unlocked room. So, I nap on the couch, where I can still hear any comings and goings, and our child is able to have easy access to me if she needs anything.
5. Developing a regular routine.
This is a struggle for all of us. We have been a family of working odd hours and schedules, which led to irregular routines. But it is very important for a child's mental well being to have a regular routine. It is especially vital if there are any anxiety issues. A structured environment, with regular schedules, helps greatly to ease much of the daily anxiety and uncertainties. It is hard for any child to feel secure when they don't know what to expect each and every day. For a child who sometimes struggles with life, it is even harder to get through each day without some kind of structure.
6. Having a scheduled "Family-Time".
Nowadays, with electronic devices and other factors - there seems to be somewhat of a disconnect with family interactions. This was true for our family. Oh, we would do things together, but not on a regularly scheduled basis. We now have a scheduled time, from 6pm-8pm, that is family time. It is a family rule that dinner is eaten together during this time. Each family member has one assigned evening that is "their" night. They get to choose the meal and activity for that night. Participation in each night's activity is not mandatory, however each of our presence is. Even if everyone is sitting around on personal devices, it must be done in the same room. Rarely, has anyone sat out an activity. We are finding that we actually enjoy our time together. Sometimes, picking an activity is almost as much fun as the actual activity itself.
This is vital for both the kids' socializing and feeling a part of a family unit. It helps alleviate depression and brings us all closer together.
7. Most importantly.....
It takes love, dedication, determination, and belief in ourselves that we CAN ensure her safety. It is knowing that there are days that we are exhausted, but will continue to get us all safely through another day. There are days that we must be warriors in our fight to keep her safe, safe from herself. Some days, the battle is harder than others and we must not give up. There is no room for uncertainties - we must ensure that we are able to do this with no doubts. We must know when to call for help. That includes calling for help when we are unsure if it is required. There are no quick fixes or overnight cures - this is changing every one of our lives in both small and large ways. We have to recognize that this is a long-term commitment that we are making. Our child depends on our strength while she is learning how to develop her own.
***Note - There is much to self-harming that I will not go into, because I am not a medical professional. If you do have a child who self-harms - do seek professional help so that your child can try to learn other methods of coping. ***
But what do we do when our self-harming child IS a risk to her self? During the crisis modes, so that our child is still able to be in the home, without the need for hospitalization?
1. Utilize our crisis support team
There are agencies who specialize in crisis evaluation in the home. While there may be times that our child is only safe in a hospital setting, not all crisis' need to result in that. With the help of professional crisis clinicians, we have the support in determining if our child requires hospitalization, before spending sometimes days in the ER waiting for psychiatric evaluations.
Our crisis team doesn't just come out in crisis moments, they also maintain regular home visits to help reduce things from reaching that point at all. We rely on our support team, and they rely on us - all for the common goal of helping our child.
2. Keeping harmful objects and "triggers" locked up.
It is important for us to remove certain things from our child's sight. In order for her professional team to feel safe about her being at home during crisis times, we must do our part to ensure her safety. And we must do so willingly. Removing everything from the walls, because we should no longer have push pins, nails, screws, etc. visibly showing and/or easily accessible, is NOT a sacrifice nor inconvenience. If that will help keep her here with us at home, versus being at a hospital, then we have no problem with it. In fact, I very happily removed everything myself. There isn't a single bit of decor that we would rather have in our home than our children.
Removing the items is only part of it though - it is imperative that these things be secured, either in a locked room or in a lock box. Currently, we have everything sharp (including kitchen knives, scissors, as well as the before mentioned wall hangers) locked up in my bedroom. My room is kept locked at all times that I am not in it. I carry the key with me at all times I am not in my room. I am not real satisfied with this current arrangement though, only because I don't like restricting access to any part of our home that I might be in from any of the children. To remedy this, I will be getting a lock box so that everything is secured and out of sight, without restricting her from coming into my room.
Some of the minor challenges to these safety measures are keeping constant vigil that sharp objects are immediately returned when needed to be used. It means coming up with alternative methods to hanging up decor. We are in the process of using double-sided tape and non-sharp hanging supplies. It is taking time and for now, most of the walls are bare, but her smile is much more beautiful than any painting or decor item.
3. Securing and administering medications.
Just as it is important for her safety to have all sharp items secured, it is additionally vital that we secure all medications. ALL medication that is in the home is also secured in my locked room. It is up to me to ensure that medication is given at required times, and doses. I cannot just hand them to her and walk away. I am now her nurse, when needed, as well as her guardian. It is my job to stand there and visually verify that she has taken the medication. I must say that she is really great about being understanding about this requirement.
It isn't just her medication that I must secure - it is the entire household medication. If you come into our home and you have medication and/or sharp objects in your purse and/or pockets - I am going to ask you to secure them in my room.
4. Staying up until the children are asleep
We have one teen and one elementary school child in the home. The teen is doing home studies and the younger child must up by 6:00am to get ready for school. The teen is rarely able to sleep right away and is up past 10:00am, I require my own quiet time while waking up before getting the younger one up, so am up by around 5:00am. This makes for short nights and long days. Too much of this can render me exhausted and less effective at ensuring our child's safety. It is up to me to make sure that I have a break, if needed, to take advantage of the days when we don't have to be up early and give myself those extra couple of hours of sleep. Because I MUST be the last one to bed, if I am to ensure the safety of our child here in the home. I can nap, but not in my unlocked room. So, I nap on the couch, where I can still hear any comings and goings, and our child is able to have easy access to me if she needs anything.
5. Developing a regular routine.
This is a struggle for all of us. We have been a family of working odd hours and schedules, which led to irregular routines. But it is very important for a child's mental well being to have a regular routine. It is especially vital if there are any anxiety issues. A structured environment, with regular schedules, helps greatly to ease much of the daily anxiety and uncertainties. It is hard for any child to feel secure when they don't know what to expect each and every day. For a child who sometimes struggles with life, it is even harder to get through each day without some kind of structure.
6. Having a scheduled "Family-Time".
Nowadays, with electronic devices and other factors - there seems to be somewhat of a disconnect with family interactions. This was true for our family. Oh, we would do things together, but not on a regularly scheduled basis. We now have a scheduled time, from 6pm-8pm, that is family time. It is a family rule that dinner is eaten together during this time. Each family member has one assigned evening that is "their" night. They get to choose the meal and activity for that night. Participation in each night's activity is not mandatory, however each of our presence is. Even if everyone is sitting around on personal devices, it must be done in the same room. Rarely, has anyone sat out an activity. We are finding that we actually enjoy our time together. Sometimes, picking an activity is almost as much fun as the actual activity itself.
This is vital for both the kids' socializing and feeling a part of a family unit. It helps alleviate depression and brings us all closer together.
7. Most importantly.....
It takes love, dedication, determination, and belief in ourselves that we CAN ensure her safety. It is knowing that there are days that we are exhausted, but will continue to get us all safely through another day. There are days that we must be warriors in our fight to keep her safe, safe from herself. Some days, the battle is harder than others and we must not give up. There is no room for uncertainties - we must ensure that we are able to do this with no doubts. We must know when to call for help. That includes calling for help when we are unsure if it is required. There are no quick fixes or overnight cures - this is changing every one of our lives in both small and large ways. We have to recognize that this is a long-term commitment that we are making. Our child depends on our strength while she is learning how to develop her own.
Wednesday, January 13, 2016
We Have A Meeting Scheduled.......
We will be attending the next meeting concerning my granddaughter's care. And I am happy to report that this will be a multi-agency joint effort, including us, to discuss current care and what else needs and/or can be done for her. The person facilitating the meeting is the one who is most actively involved in her therapy and not only does she have a great rapport with him, we also have trust in him and in knowing that he has the same goals and desires as we do concerning her ongoing care.
This started out with feelings of helplessness, anger, and bitterness over what we saw as a failed system. There are still bad feelings over how parts of our health care system failed her, but we are learning that it wasn't any one agency, health care policy, or political issue to blame. It was a cumulative series of failures, both small and large, including failures of our own. They say that hindsight is 20/20 and the more I learn and see, the more I realize that had we been more proactive early on, had we taken the measures that we are taking now, had we done lots of things differently, much of what is happening now would have happened months ago.
Gone is the blaming. The guilt may never fully go away. But the focus is not on the past - but rather on going forward from here. And we are going forward with renewed hope and support. Regardless of what the future brings, I feel secure in knowing that we are not alone. We have a team of professionals working with us, helping not just my granddaughter but us as well, so that we can best help her. Even if one on her team leaves, as they sometimes do for various reasons, and is replaced with someone less effective - we know that we have control in having that rectified. Our team has empowered us with the reassurance that we do have a say in everything. In fact, we are the overseers of her team.
Even better, her professional team "captain" is striving to help her find her voice in her care because she has the one this is all about. Her voice is the most important and carries the most weight. She is still learning how to use her voice in an effective manner. It isn't always easy, but she is a pretty tough kid and we all have faith in her. She has shown so much more progress in just a few weeks, than ever before. She may struggle for a long time with trusting those who's job it is to look after her best interests, but hopefully that day will eventually come when she can believe that she has a team of people who will pull her up out of any cracks she might ever again start to slip into.
I am not going to go into any details about her therapy, or what it entails. Trust needs to be a two-way street. We are trusting this team and we must be trusted by them. And now that our struggles as parent/guardian are at an end, this story is now her's to tell, and her's only. I will continue to provide updates on how we, as her guardians, are faring - what challenges, victories, struggles, and lessons we encounter. But only so that we can help other families who might be struggling with the same, or similar issues. And I will definitely be sharing any and all resources I find, in any and all areas. That continues to be our goal - to become a resource for helping other families locate the help they need to help their children.
****Coming up - I'll be starting a state by state list of resource links and numbers. If you know of any that you feel could help other families, please share them with us so that they can be included too.****
This started out with feelings of helplessness, anger, and bitterness over what we saw as a failed system. There are still bad feelings over how parts of our health care system failed her, but we are learning that it wasn't any one agency, health care policy, or political issue to blame. It was a cumulative series of failures, both small and large, including failures of our own. They say that hindsight is 20/20 and the more I learn and see, the more I realize that had we been more proactive early on, had we taken the measures that we are taking now, had we done lots of things differently, much of what is happening now would have happened months ago.
Gone is the blaming. The guilt may never fully go away. But the focus is not on the past - but rather on going forward from here. And we are going forward with renewed hope and support. Regardless of what the future brings, I feel secure in knowing that we are not alone. We have a team of professionals working with us, helping not just my granddaughter but us as well, so that we can best help her. Even if one on her team leaves, as they sometimes do for various reasons, and is replaced with someone less effective - we know that we have control in having that rectified. Our team has empowered us with the reassurance that we do have a say in everything. In fact, we are the overseers of her team.
Even better, her professional team "captain" is striving to help her find her voice in her care because she has the one this is all about. Her voice is the most important and carries the most weight. She is still learning how to use her voice in an effective manner. It isn't always easy, but she is a pretty tough kid and we all have faith in her. She has shown so much more progress in just a few weeks, than ever before. She may struggle for a long time with trusting those who's job it is to look after her best interests, but hopefully that day will eventually come when she can believe that she has a team of people who will pull her up out of any cracks she might ever again start to slip into.
I am not going to go into any details about her therapy, or what it entails. Trust needs to be a two-way street. We are trusting this team and we must be trusted by them. And now that our struggles as parent/guardian are at an end, this story is now her's to tell, and her's only. I will continue to provide updates on how we, as her guardians, are faring - what challenges, victories, struggles, and lessons we encounter. But only so that we can help other families who might be struggling with the same, or similar issues. And I will definitely be sharing any and all resources I find, in any and all areas. That continues to be our goal - to become a resource for helping other families locate the help they need to help their children.
****Coming up - I'll be starting a state by state list of resource links and numbers. If you know of any that you feel could help other families, please share them with us so that they can be included too.****
Friday, January 8, 2016
How You Can Help Your Child.......
BE PROACTIVE!
Don't wait for someone to help you, because by the time that happens you may have waited too long. There are many great agencies and professionals who are trained to know how to best help your child. However, children can (and do) fall through the cracks. Do everything you can to get the help you need. Chances are, people are not going to be calling you up to offer help and advice - you have to be proactive in finding the resources your child needs.
DON'T STOP ASKING QUESTIONS!
If you don't fully understand something, feel like you are being excluded in decision making, or are simply uncomfortable with the recommendations you are given - question it and keep questioning it. Trust your gut instincts! As your child's guardian you will be the one to ultimately sign off on any and all decisions regarding his/her care. Insist on knowing what all options are and why the person recommending any particular option feels that way.
BE PREPARED...
Don't wait for something to happen with your child that you find yourself struggling to figure out how to help them. Learn about possible events and how you would handle them. Gather a list of resources for all eventualities. Talk with friends and family who have dealt with any crisis involving their children about how they handled it and/or what struggles they had finding resources to help. We have fire drills, earthquake drills, tornado drills, and so many other crisis drills to keep our children safe. Learn what you need to do to keep your child safe from unforeseen events, including keeping them safe from themselves.
DEMAND HELP
There are resources for your children. Speak up! Demand a case manager to help you navigate through the options available to you. Insist on being included in all decisions regarding your children. Find out what the arguments for and against different options are, before you make a final decision. There are advocates for just about any issue; educational, legal, medical, victim, mental health, etc. Your child has a right to those advocates! They will help you by being a voice for your child.
YOU ARE YOUR CHILD'S BEST ADVOCATE!
Regardless of how little professional knowledge you might have, you are still your child's best advocate. In fact, you are your child's primary advocate. You have the final say in all decisions. It is up to you to ensure that your child is best cared for. We must stop expecting other people and/or agencies to do all of the work. They have vast resources, training, and experience - and yet, they are hindered by lack of involvement by a child's family. We can no longer sit back and wait for others to do all of the work. Our children need us to fight for them - proactively.
ASK FOR HELP IN HELPING YOUR CHILD
If you need help in writing a letter, ask someone for that help. If you need advice on where to get started, ask for it. If you need help in navigating the internet for searches, get help with that. Seek out others who have dealt with similar situations with their children. I can almost guarantee that there is another parent/guardian out there who has gone through what you are going through. Ask questions about what did, and didn't, work for them. Do not allow pride and/or stigmas to stand in the way of helping your child.
DON'T GIVE UP!
Once you get started, you will find the going easier at times, and more frustrating at others. Do not give up! During the hardest of times, when you think that you cannot do it - look at your child and then ask what you would not do for him/her. Your child is depending on you. Giving up and giving in to the frustration and helplessness is essentially giving up on your child. Get the help and support you need, professional, family, friends, whatever and whomever can help you keep going - just don't give up.
Don't wait for someone to help you, because by the time that happens you may have waited too long. There are many great agencies and professionals who are trained to know how to best help your child. However, children can (and do) fall through the cracks. Do everything you can to get the help you need. Chances are, people are not going to be calling you up to offer help and advice - you have to be proactive in finding the resources your child needs.
DON'T STOP ASKING QUESTIONS!
If you don't fully understand something, feel like you are being excluded in decision making, or are simply uncomfortable with the recommendations you are given - question it and keep questioning it. Trust your gut instincts! As your child's guardian you will be the one to ultimately sign off on any and all decisions regarding his/her care. Insist on knowing what all options are and why the person recommending any particular option feels that way.
BE PREPARED...
Don't wait for something to happen with your child that you find yourself struggling to figure out how to help them. Learn about possible events and how you would handle them. Gather a list of resources for all eventualities. Talk with friends and family who have dealt with any crisis involving their children about how they handled it and/or what struggles they had finding resources to help. We have fire drills, earthquake drills, tornado drills, and so many other crisis drills to keep our children safe. Learn what you need to do to keep your child safe from unforeseen events, including keeping them safe from themselves.
DEMAND HELP
There are resources for your children. Speak up! Demand a case manager to help you navigate through the options available to you. Insist on being included in all decisions regarding your children. Find out what the arguments for and against different options are, before you make a final decision. There are advocates for just about any issue; educational, legal, medical, victim, mental health, etc. Your child has a right to those advocates! They will help you by being a voice for your child.
YOU ARE YOUR CHILD'S BEST ADVOCATE!
Regardless of how little professional knowledge you might have, you are still your child's best advocate. In fact, you are your child's primary advocate. You have the final say in all decisions. It is up to you to ensure that your child is best cared for. We must stop expecting other people and/or agencies to do all of the work. They have vast resources, training, and experience - and yet, they are hindered by lack of involvement by a child's family. We can no longer sit back and wait for others to do all of the work. Our children need us to fight for them - proactively.
ASK FOR HELP IN HELPING YOUR CHILD
If you need help in writing a letter, ask someone for that help. If you need advice on where to get started, ask for it. If you need help in navigating the internet for searches, get help with that. Seek out others who have dealt with similar situations with their children. I can almost guarantee that there is another parent/guardian out there who has gone through what you are going through. Ask questions about what did, and didn't, work for them. Do not allow pride and/or stigmas to stand in the way of helping your child.
DON'T GIVE UP!
Once you get started, you will find the going easier at times, and more frustrating at others. Do not give up! During the hardest of times, when you think that you cannot do it - look at your child and then ask what you would not do for him/her. Your child is depending on you. Giving up and giving in to the frustration and helplessness is essentially giving up on your child. Get the help and support you need, professional, family, friends, whatever and whomever can help you keep going - just don't give up.
Wednesday, January 6, 2016
And Then Suddenly........
Everything seems to have suddenly "clicked" and is coming together. We will be attending the next meeting, as well current and former care providers who have been involved in my granddaughter's care. It will be a meeting of what has been done, what wasn't done, what needs to be done, and what will be done. The person who will be facilitating the meeting is one whom we all trust and who has expressed the same goals and desires for her current and future health as ours are. It is like a huge weight has been lifted off our shoulders. While mine at least. We have a long ways to go before my granddaughter will ever fully trust in any of the adults who have been responsible for her care. But, for the first time, there is a feeling of teamwork and reassurance that, ultimately - her care is what is important and we will be able to do all that we can to ensure that care is provided for her.
So what brought about these changes? I honestly don't know for sure. Maybe it was finally asking the right questions. Maybe it was us learning late to be more proactive and less accepting. Maybe it was the breakthroughs she has made in the midst of her meltdowns. Maybe it was finding the right people to be involved in her care. Maybe it was a frustrated letter to the President resulting in state investigations into everything. Maybe it was all of the above. Whatever it was that brought these changes about, I am greatly relieved.
Does this mean that all is suddenly okay? No. We might never fully get over the resentment of feeling so helpless for so long, while watching her health decline. There are still too many cracks for children, and their families, to fall through. There are still too few advocates, to help those children and families out of those cracks. We cannot undo the past mistakes, both personal and professional, but we cannot help but to wonder just how much different life would be for her had all this begun a year ago.
But there is something very important that I am learning from all of this. There are resources. There are people who do care and are doing all that they can to help us. However, there are only so many of those people and they can only do so much. We are our children's biggest advocates. It is up to us to be proactive, to ensure that our children get that care, to demand it. The people who we need to be there for our children need us to be there for them as well. Just as we cannot do it alone, neither can they. But more needs to be done to help educate the parents and guardians on how to get the resources, where to turn, what questions to ask.
In 1965, when many of these resources were enacted, charity was something to be avoided, along with the stigma of mental health issues. Because of this, perhaps much has lost as far as knowledge of what is available to us. Mental health and charity still are often debated issues, most of the time becoming political argument fodder. When it comes to our children - we need to get past the stigmas, get past the hesitancy of asking or demanding help, and be the proactive advocates that they need. When I was a child, my mother would often say, "You don't ask anyone for anything, if they know what you need they will provide it. But when it comes to your children, you go banging on doors if need be. Shame has no place in making sure your children are okay". We banged on doors and we are getting the help we need. We should have banged harder and sooner though.
While we are now feeling like we are getting the help and cooperation, that we didn't feel we had before, we do not want to stop here. We want to become the help that others might need. We want to continue speaking up and speaking out for other families who may be facing the same situation as we have. We want to continue this journey. How will we do that? Well, we are still learning as we go. But if there is one thing that I am good at, it is stubborn determination.
****Personal updates on my granddaughter will be coming to an end. That is her story to tell, not mine. I will continue to update on our journey of navigating through learning about resources and what we are trying to do to help others. I hope that you continue this journey with us, and encourage others too as well. "It takes a village to raise a child" - and as a community we can pool our knowledge to help as many as possible.****
So what brought about these changes? I honestly don't know for sure. Maybe it was finally asking the right questions. Maybe it was us learning late to be more proactive and less accepting. Maybe it was the breakthroughs she has made in the midst of her meltdowns. Maybe it was finding the right people to be involved in her care. Maybe it was a frustrated letter to the President resulting in state investigations into everything. Maybe it was all of the above. Whatever it was that brought these changes about, I am greatly relieved.
Does this mean that all is suddenly okay? No. We might never fully get over the resentment of feeling so helpless for so long, while watching her health decline. There are still too many cracks for children, and their families, to fall through. There are still too few advocates, to help those children and families out of those cracks. We cannot undo the past mistakes, both personal and professional, but we cannot help but to wonder just how much different life would be for her had all this begun a year ago.
But there is something very important that I am learning from all of this. There are resources. There are people who do care and are doing all that they can to help us. However, there are only so many of those people and they can only do so much. We are our children's biggest advocates. It is up to us to be proactive, to ensure that our children get that care, to demand it. The people who we need to be there for our children need us to be there for them as well. Just as we cannot do it alone, neither can they. But more needs to be done to help educate the parents and guardians on how to get the resources, where to turn, what questions to ask.
In 1965, when many of these resources were enacted, charity was something to be avoided, along with the stigma of mental health issues. Because of this, perhaps much has lost as far as knowledge of what is available to us. Mental health and charity still are often debated issues, most of the time becoming political argument fodder. When it comes to our children - we need to get past the stigmas, get past the hesitancy of asking or demanding help, and be the proactive advocates that they need. When I was a child, my mother would often say, "You don't ask anyone for anything, if they know what you need they will provide it. But when it comes to your children, you go banging on doors if need be. Shame has no place in making sure your children are okay". We banged on doors and we are getting the help we need. We should have banged harder and sooner though.
While we are now feeling like we are getting the help and cooperation, that we didn't feel we had before, we do not want to stop here. We want to become the help that others might need. We want to continue speaking up and speaking out for other families who may be facing the same situation as we have. We want to continue this journey. How will we do that? Well, we are still learning as we go. But if there is one thing that I am good at, it is stubborn determination.
****Personal updates on my granddaughter will be coming to an end. That is her story to tell, not mine. I will continue to update on our journey of navigating through learning about resources and what we are trying to do to help others. I hope that you continue this journey with us, and encourage others too as well. "It takes a village to raise a child" - and as a community we can pool our knowledge to help as many as possible.****
Monday, January 4, 2016
An Exhausting Day......
Today was "home inspection" day with one of my granddaughter's mental health teams. It was scheduled for in the afternoon. However this morning, after reading a journal type blog that she started last night, we became concerned about her safety and contacted her crisis team. What followed next was the worst that I have personally witnessed. It was a full-blown meltdown that escalated into a major episode.
Apparently, someone is/was concerned about her mental health and our providing her the proper care, so they contacted Child Welfare (formerly known as CPS - or Child Protective Services). A minor episode quickly escalated after their arrival. She had no idea who they were and was furious that there were more people here. At one point, she locked herself in her room and we heard the sounds of things breaking, the crisis team made the decision to contact the police department. An officer arrived and made her come out of her room until she could calm down. This was the first time a meltdown required the involvement of the police.
So, we had a houseful of mental health crisis team, CPS, a police officer, and one very angrily hostile girl. But then something happened. The officer deemed her to be calm enough to not require hospitalization, the CPS apologized for not calling ahead and promised to do so next time, and the crisis clinician got her stabilized. However, we were shaken to the core, wondering if the long-term care would be best. Scared that we were ill equipped to best help her.
Later in the afternoon, after all of this happened, I got in touch with one of the State workers who had assisted us with advice. I voiced my concerns about being left out of the decision making process, about worrying we will have to make a decision without knowing all the options available, and whether or not the various agencies are working together as a team. We want to work together with everyone. We want this to be a coordinated effort to get my granddaughter the best care for her. The state worker gave me more information, advice, and encouragement.
While still on the phone with the State, my granddaughter's crisis team returned to check up on her. Because of the escalation earlier, they decided that there were further safety measures that needed to be taken (no push pins, string of colored lights, glass objects, and other items) and that set her off into another fit of anger. This one wasn't as bad as this morning though, and I was able to think back on the morning's events while watching the clinician work. And that merged into us all working together and communicating concerns, questions, and other issues. Realizing that we do have the same desires involving how to proceed, and that a meltdown doesn't necessarily mean hospitalization.
I am ending the day with renewed hope. This is going to be a long, challenging, heartbreaking at times, and sometimes frightening journey. But she is worth it. She is worth whatever it takes to ensure her safety and eventual happiness. My next immediate goal is to get these individual people and agencies, along with us, as a cohesive team. Only with teamwork can we ensure that we are ALL working towards the same goal.
****The journey continues......actually it has only really just begun.****
Apparently, someone is/was concerned about her mental health and our providing her the proper care, so they contacted Child Welfare (formerly known as CPS - or Child Protective Services). A minor episode quickly escalated after their arrival. She had no idea who they were and was furious that there were more people here. At one point, she locked herself in her room and we heard the sounds of things breaking, the crisis team made the decision to contact the police department. An officer arrived and made her come out of her room until she could calm down. This was the first time a meltdown required the involvement of the police.
So, we had a houseful of mental health crisis team, CPS, a police officer, and one very angrily hostile girl. But then something happened. The officer deemed her to be calm enough to not require hospitalization, the CPS apologized for not calling ahead and promised to do so next time, and the crisis clinician got her stabilized. However, we were shaken to the core, wondering if the long-term care would be best. Scared that we were ill equipped to best help her.
Later in the afternoon, after all of this happened, I got in touch with one of the State workers who had assisted us with advice. I voiced my concerns about being left out of the decision making process, about worrying we will have to make a decision without knowing all the options available, and whether or not the various agencies are working together as a team. We want to work together with everyone. We want this to be a coordinated effort to get my granddaughter the best care for her. The state worker gave me more information, advice, and encouragement.
While still on the phone with the State, my granddaughter's crisis team returned to check up on her. Because of the escalation earlier, they decided that there were further safety measures that needed to be taken (no push pins, string of colored lights, glass objects, and other items) and that set her off into another fit of anger. This one wasn't as bad as this morning though, and I was able to think back on the morning's events while watching the clinician work. And that merged into us all working together and communicating concerns, questions, and other issues. Realizing that we do have the same desires involving how to proceed, and that a meltdown doesn't necessarily mean hospitalization.
I am ending the day with renewed hope. This is going to be a long, challenging, heartbreaking at times, and sometimes frightening journey. But she is worth it. She is worth whatever it takes to ensure her safety and eventual happiness. My next immediate goal is to get these individual people and agencies, along with us, as a cohesive team. Only with teamwork can we ensure that we are ALL working towards the same goal.
****The journey continues......actually it has only really just begun.****
Friday, January 1, 2016
Feeling Uncertain About Everything
I am not sure how to feel about how things are progressing. Don't get me wrong, I am extremely grateful that we appear to be getting the help that we have been wanting. Yet, why am I now feeling almost like we are fighting against what we fought for?
You see, one of the first responses we received was a letter from one of the state agencies. That official implied that long-term care should be a last resort measure, as there are so many more youth resources available that involve short-term intensive therapy. Her psychiatrist is pushing for long-term (six months to a year) placement. One of my granddaughter's newer counselors wants to try her on an intensive six-week therapy, one that will allow her to remain at home. If such a thing is possible and there is a chance for success, of course we want this chance for her. We do not to send her away anywhere, if there is a way for her to receive the help she needs and remain at home with us. The thought of long-term care is devastating to us all, especially if there are other options that can be successful.
Well, now there are meetings involving State of California officials and our county's Mental Health supervisors. From what we have been told, they are to determine what care my granddaughter has received, what care resources are available to her, and what is the best course of action now. This is great, right? But.... why are we not included in these meetings? Why are not the counselors and clinicians, who are the ones directly interacting with her, included in these meetings. Who is advocating for her personally?
While I am grateful that someone is stepping in to find out how and why her care was not managed properly and taking measures to make sure that is remedied, I am concerned about the fact that we are not included in any of this decision making. We want to work together with all those involved in my granddaughter's current, and future care. We want to know what these options are. We want to have a say in making decisions fully informed of what other choices we have. We don't want to fight against the opinion or recommendations of those who are trained in such matters. But we do want to be included. We don't know if these people are all agreeing on what is best for her, if there are differing opinions, or any of it.
I am just not comfortable with being secluded from all of this. It still feels like a group of people have more say than her own guardians, than the very people who know her as a person, not just a patient. Are these meetings being done without us because of possible litigation concerns? We care much, much more about her care now than what wasn't done right before. We cannot undo time nor any oversight. Something is being done now, and that is great. Just why do we still feel like we have little to no say?
I am going to be contacting the Deputy Administrator who reached out to me to voice these concerns. We still don't know what the resources are that she referred to. We are given vague remarks that my granddaughter is already receiving these resources. But if that is the case, why the need for secluded meetings? And why can no one actually give names to these resources. None of the counselors, nor clinicians, that I have spoken to have ever heard of the CMHP (County Mental Health Plan), that my granddaughter should have already been on, although they now claim that is what she has been receiving.. How can we be certain that she is receiving the best care if those caring for her don't even know what that care is called?
****To Be Continued...... I'll share more when I know more****
You see, one of the first responses we received was a letter from one of the state agencies. That official implied that long-term care should be a last resort measure, as there are so many more youth resources available that involve short-term intensive therapy. Her psychiatrist is pushing for long-term (six months to a year) placement. One of my granddaughter's newer counselors wants to try her on an intensive six-week therapy, one that will allow her to remain at home. If such a thing is possible and there is a chance for success, of course we want this chance for her. We do not to send her away anywhere, if there is a way for her to receive the help she needs and remain at home with us. The thought of long-term care is devastating to us all, especially if there are other options that can be successful.
Well, now there are meetings involving State of California officials and our county's Mental Health supervisors. From what we have been told, they are to determine what care my granddaughter has received, what care resources are available to her, and what is the best course of action now. This is great, right? But.... why are we not included in these meetings? Why are not the counselors and clinicians, who are the ones directly interacting with her, included in these meetings. Who is advocating for her personally?
While I am grateful that someone is stepping in to find out how and why her care was not managed properly and taking measures to make sure that is remedied, I am concerned about the fact that we are not included in any of this decision making. We want to work together with all those involved in my granddaughter's current, and future care. We want to know what these options are. We want to have a say in making decisions fully informed of what other choices we have. We don't want to fight against the opinion or recommendations of those who are trained in such matters. But we do want to be included. We don't know if these people are all agreeing on what is best for her, if there are differing opinions, or any of it.
I am just not comfortable with being secluded from all of this. It still feels like a group of people have more say than her own guardians, than the very people who know her as a person, not just a patient. Are these meetings being done without us because of possible litigation concerns? We care much, much more about her care now than what wasn't done right before. We cannot undo time nor any oversight. Something is being done now, and that is great. Just why do we still feel like we have little to no say?
I am going to be contacting the Deputy Administrator who reached out to me to voice these concerns. We still don't know what the resources are that she referred to. We are given vague remarks that my granddaughter is already receiving these resources. But if that is the case, why the need for secluded meetings? And why can no one actually give names to these resources. None of the counselors, nor clinicians, that I have spoken to have ever heard of the CMHP (County Mental Health Plan), that my granddaughter should have already been on, although they now claim that is what she has been receiving.. How can we be certain that she is receiving the best care if those caring for her don't even know what that care is called?
****To Be Continued...... I'll share more when I know more****
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