For the most part, I live a quiet life. You mind your business, and I'll mind mine and we'll all get along happily. You won't find me being one to rock the boat or stir up a storm over much. But every once in a while a fire starts burning in my belly, if you will.
Sometimes you find yourself having to say things when you'd rather not have to, which is what I've found myself having to do a lot of over the last few years. In the recent past I've written about having to advocate for my kids because they need my voice. Even with that I try to be as cooperative and flexible as possible with regards to working things out because I want to get along with people, I don't want to be that special needs mom. Nothing against you mom's at all! You just have a knack for having the right words at the right time. On the other hand, you'll find me fumbling for words and trying to piece together a cohesive sentence. That's just me. I have to take time to form my thoughts, to be able to process those cohesive sentences so that I can get the right thing out.
First I want to open this with...we have been extremely blessed to have had a mostly pleasant experience with receiving services and healthcare while here in California. Up to this point all the social workers we've met with have been very helpful and accommodating as well. That's not to say there haven't been instances of difficulty due to confusion between healthcare providers, or insurance denying certain things. However, our overall experience has been good. Later on, towards the end, I will share some of our struggles now. But they are nothing compared to what some people I've met have experienced.
Bear with me as I figure this out as I'm writing it. The plain and simple truth of parenting special needs kids is that a great portion of energy can sometimes go into having to advocate and fight against a system, or systems, that were brought into existence to help exactly those people who are now fighting to get the rights which those systems were created to help with. In the last week alone I've heard several stories about having to fight the school system to get an IEP for a child who is medically entitled to one but which the school district for whatever reason feels that they can deny. (We actually faced this while in North Carolina.) And then the systems that are set in place to help families stay together in their own home rather that have their child or family member sent away to some state/governmental institution to be cared for by healthcare workers that are over-worked and under-paid themselves. It's corruption. It's wrong. It wears on care-givers that are already at the brink with giving 24/7 care to a loved on that they want to help. I have heard stories first hand of social workers interrogating the disabled and making the family members feel violated and in the wrong for seeking help from the exact systems that are there to supposedly help them.
It's frustrating. It makes me so angry. It's not fair. These social workers are not only taking advantage of people in fragile situations, but the harassment and the double-talk and the total lack of compassion for these peoples situations is less than human. To treat these people who may be medically fragile as though there is no need for outside help or assistance is cruel. To down-play their difficulties is cruel. What percentage of these social workers or state workers have any sort of experience first hand with living with and caring for someone with a disability or special needs? It should be a requirement. What is the percentage of people taking advantage of these programs? Something like less than 2%. Who would even want to spend their time and energy spending months trying to get these "benefits" when the journey to get there is like having to fight some corporate giant (government)? The whole thing is atrocious.
And I don't know what to do, but pray.
And now we arrive to where I currently am. I have several kids with several different diagnoses. I am tired most days. I get bleary eyed. I forget things, or I over schedule appointments because it's me alone coordinating all of this. Even with support of several family members I still struggle to balance it all. As supportive as they are, none of them are versed in the first-hand of having to deal with each child's needs full time. I realized my need to delegate things out. But I also realized my need for some backup with regards to having someone that can point me in the right direction and be my second-hand-man. That's where it came in to play for me to acquire an Advocate. The reason wasn't to "fight against the big guns", but to have someone there who knows what to ask for by looking over each of my kids file-binders to see where I am lacking in knowledge or skill to get the services that they are entitled to that might be beneficial to their future success. I want each of my children to succeed in life, no matter what that means. (Here in my home as adults, or on their own. I'm always thinking of the future.) It made sense to find an Advocate for help. As soon as I took advantage of her assitance to make some calls on my behalf it was as if I had called in the big guns. It felt like I might as well have "lawyered up" against the people that I had a good repore with, and so I had to make calls to sooth hurt feelings....
This will need to be continued as I have chores and kids to tend to. But I'm sure you can imagine my feelings of frustration. Can you relate? Do you have an experience similar?