"There is something dangerously wrong with the system when
people with plenty of common sense and oodles of education can't
understand the government programming that is supposed to help their child.
If we can't navigate the system, then please explain to me how an independent adult with special needs or an elderly person looking for similar programming is supposed to
understand it and be successful in achieving it. To say that our system is broken
and not serving those in need just might be the understatement of the century."
I am Kelli. I am a bio mama. I am an adoptive mama. I am a mama to kids with varying forms of brain injury. I am a mama to amazing kids who through no fault of their own have experienced hurt and pain and trauma. I am a Trauma Mama.
Special needs parents, we are all Trauma Mamas (& Daddies), and anyone who has walked this road knows and understands the trauma and the parental fight that goes into sheltering and protecting your child from that trauma. As a Trauma Mama for the past two years, I have walked the long and winding road of programming, therapies, and waivers that are supposed to help our trauma kids. Sometimes these programs are fantastic and amazing, and sometimes the paperwork, red tape, and attitudes of non-special needs knowledgeable employees is detrimental to Trauma Mamas and our Trauma Kiddos, and so that's what we're going to talk about here - how can we be Trauma Mamas and ensure that our kids are getting the services and the care that they need and deserve.
The amount of tears that I have shed while dealing with governmental red tape these past two years could fill enough buckets to successfully water gardens in drought-laden California. The amount of frustration - pens thrown across the room, paper shredded into bits, chairs kicked across the room - that I have experienced in the same time frame while trying to walk this road might very well make a normal person snap. You see, unless you are a Trauma Mama (or Daddy) you can't fully understand the fact that governmental entities aren't set up to successfully serve our children or us for that matter. These agencies will claim that they can and do, but let's face it, if most of us were given millions of dollars every year to do a job, most of us would claim that we were, even when we weren't successful at all. And that is, in fact, the root of the problem.
Special needs parents are fighters. We are advocates. In the dictionary, if you looked up the term "special needs parent" you should see every adjective next to it explaining that we are warriors for our children because we know that unless we fight within an inch of our lives for our child, no one else will. No one else will. So we fight and we cry and we become frustrated and we develop anxiety because all we do is fight and cry and be frustrated and when we ask for help from agencies that are in place to help children with special needs, they are supposed to help us. But those of us who have been around the block know that all we, as Trauma Mamas, continue to do is to double up and fight these same fights with the same agencies while also fighting the original fight. And at some point, there's only so much fight in us before we have to stop, take a breather, and set our torch down hoping that while we rest, no one will come at us with another punch.
This blog as a whole - not just this post - has been a long time coming - two years in fact. I've struggled with how to pass along the lessons that I've learned on my own and from others before me with those who are soon to follow along this path. Every special needs child is different, yet it seems for us as parents, our walk seems to be the same - difficult. I've struggled with putting our fight out there without telling my kids' very personal stories. And then today happened... and in the midst of today's messiness and tears and hard fought fight, I realized that no one should ever have to walk this road without support and knowledge of how these programs work. No one should be bullied by case managers and governmental employees. No one should feel that they have no other choice than to be pushed around by employees that don't understand special needs or special needs children. And so here I sit, on vacation at 1 a.m. in tears creating a blog because no one who fights like hell for their child should be made to feel like I did today. (So for now, ignore the antiquated layout and design because that will come. Right now, let's talk.)
So today.... let's talk about today.... Because I have handed our current "issue" over to a state representative, I'm choosing not to go into great detail until this has been investigated and resolved. Yet I will say this for new and current Trauma Mamas, there are state and federal programs set into place that are well-meaning and are truly meant to do good things for special needs/trauma kiddos. Some programs are fantastic, some aren't. Do your due diligence before signing any piece of paperwork. Ask others about their experiences. There are phenomenal special needs knowledgeable specialists and care providers who care just as much about our children as they do Trauma Mamas and Daddies, and there are some who have absolutely no knowledge of trauma and special needs and are in their job for a paycheck and to punch the clock. That's some of what we're going to talk about in future blog posts too.
But I will say this, if you are so blessed to find specialists and care providers who are knowledgeable and are caring, latch onto them and don't let them go because, unfortunately, they are few and far between. Create a team for your child. A team that is supportive in good times and in bad. A team that will listen and give feedback even when you don't want to hear it. I'm so thankful, especially given today's horrid experience, that we have created Team Noah over the past two years because after I received a phone call from a worker of a state program we signed Noah up for, I was in tears and angry and didn't know up from down. After attempting to stop an ugly cry, I started calling upon Team Noah. I called Jo, the top nurse for the pediatric developmental specialist that Noah sees and told her what we were just told. I called Stephanie, a case manager for ChildServe, who has answered more questions about programming for me than our own county workers have. And I cried on the phone...and they listened. I truly have no idea how through my sobbing and hiccuping and snorting that they understood what I was saying, but they listened, and they explained, and they told me the good, the bad, and the ugly, and finally with true blue knowledge, Paul and I were able to make a decision about how we would move forward with this programming. Create your team.
And as you create that team, guard your heart knowing that these programs may or ma not be the best thing for your child. At some point, you may have to know when to cut your losses. We chose to do just that today. When a program that is to provide services for your child not only doesn't provide the services it's supposed to, but is a constant stressor and includes employees who choose to be crass and confrontational you have to be able to say enough is enough. Team Noah specialists helped us to make that decision today so we know that it wasn't made out of stress or emotion.
Most of the state governmental programs created to help Trauma Kiddos are at their very heart good, but they don't always have special needs knowledgeable people in place to make that happen. We live in rural Iowa. In our state, unless you live in the golden circle of the Des Moines metro area, you don't have access to some of the best services, like ChildServe, available to you. If we were to pick up our Century Farm and move it to Polk County, we'd be able to have access to some pretty fantastic staff and services. But we don't have that and we can't move the farm, so here we are.... in a region comprised of dozens of counties with only a handful of employees that understand medical and intellectual special needs and are also trained in these programs. As my husband so "kindly" compared it today, it's like sending someone who has watched the television show ER in to do actual surgery, or in our case as teaching professionals, someone who was in a classroom as a student in to teach even though they don't have the education or the training and certification. The system is broken.
While today taught me many lessons (and created quite a few service related future blog posts) it also taught me that there is something dangerously wrong with the system when people with plenty of common sense and oodles of education can't understand the government programming that is supposed to help their child. If we can't navigate the system, then please explain to me how an independent adult with special needs or an elderly person looking for similar programming is supposed to understand it and be successful in achieving it. To say that our system is broken and not serving those in need just might be the understatement of the century.
The system is broken and yet we must navigate it for our children because that's what Trauma Mamas do. We put our kids' needs above our own and fight like hell to get them what they need. So let's work together to navigate this road and figure out how to fix it.
Next up - let's talk about that golden circle.
