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.****
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