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.

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.

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 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****

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****

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.

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.****