That's What God Sounds Like

It was a typical start to the weekend in our house. Kids in bed. I'm trying to catch up on some computer work (i.e. Facebook, Pinterest and Blogger) when my husband hands me a letter from Georgia DHR saying, "this is going to ruin your night." It was a notice of termination regarding Jackson's Medicaid.

Let me pause here and share what exactly I'm talking about. Back when all this was new to us and we didn't know we had options, we accrued a pretty substantial amount of debt in medical and therapy expenses. The doctors, teachers, psychologists and therapists all told us Jackson needed these services to function, that without them, he wouldn't have a chance of developing properly and the developmental gap between where he was and where he should be would continue to widen. However, these services are expensive. We kept going, paying what we could when we could, but it was getting out of control. One of Jackson's therapists invited me to a parent night out where a Medicaid expert would be speaking about the Katie Becket Deeming Waiver. This is a special waiver for children with disabilities requiring extensive therapy. It is based on the diagnosis and prognosis of the child not the income of the family. Jackson's diagnosis qualified him for that program. It was a crazy set of hoops we had to jump through, but without this program, Jackson would not have received the services he needed to achieve what he has achieved over the past 4 years. He would certainly be in a very different place. If you are a Georgia family with a child on the spectrum, and you haven't heard about the program, you should check it out (and make sure you read all the way to the end). Now back to my story....

When I read the line "NOTICE OF TERMINATION" and then "YOU DID NOT GIVE US THE INFORMATION WE REQUESTED," my physical response was immediate. My heart started racing. I could feel the blood pumping through my temple. I felt hot and flushed at the same time. What?!?!? I'm telling you, if I didn't have Jesus, I'm afraid someone would have died. I immediately called the number on the form thinking I would leave a message. Good call, Rach, you're so clear headed and rational right now, you'll leave an awesome message. It's busy....Now, that's not uncommon. Back in my rational mind, the one I jumped out of for a moment, I knew DFCS doesn't have a voice mail. (Could you imagine having that job? No, thank you!) I've called them dozens of times over the past year trying to get the review paperwork we needed. See, we never got our review packet last year. Actually, we received absolutely nothing from them last year. I called over and over and got different answers from different people. No one could tell me his case worker. They would often refer me to another county's office, which would often end with the busy signal as well. I eventually got someone at the state office who told me, "we'll get to the bottom of this," and heard nothing. I've heard over and over again how overwhelmed they are at DFCS. I've heard over and over, just give them time, they'll get to you. So, we waited and waited, eventually receiving this termination notice and leading me to the brink of a total nervous system collapse....I can't get them on the phone? Fine, then I'll get them by email. Off to the website. There isn't an email account for our county's DFCS office. (Something else I knew in the back of my mind. Who would want that job either?) Awesome. Well, then I'll go above them. I emailed every commissioner, representative, office clerk I could think of. I must have sent out dozens of emails all stating our situation and how horribly my son's review was handled. I dropped names and dates for when I had talked to them and what they had said. I even mentioned my husband and his active role in our county's child advocacy programs. I sat at my computer for a long while executing vengeance on my keyboard until I rather anticlimactically went to bed. Nervous and unsettled, Monday couldn't come fast enough.

Kids fed. Everyone showered and dressed for the inevitable trip down to DFCS. I thought I would try it one more time by phone. First try, busy. Second try, rings indefinitely. Third try, busy. Fourth try, hallelujah someone picks up and says, "Barbara?" I quickly seized the opportunity before she could back track and said, "no, but I need to speak to someone regarding a termination notice." "Sure, hold on." Great, now I'm on hold. Someone gets on. I give her my information. I'm given another number to call, in another county. When I call this number, I get a very frustrated woman explaining to me that my county sent over all review cases between last July and this March to her county. Many were lost in the transfer either to them or from them, and while her name was on our case, she had nothing to do with it. And, even better than that, she couldn't help me. I would likely have to reapply, through my county's office. So, I take a deep breath, vent on Facebook and load everyone up in the car. Did I mention that it's raining. Wonderful.

Not sure what to expect, nervous and sick to my stomach, I wait in line. My boys settle into seats with their DS's while my daughter happily makes friends with everyone in line. The closer I got to the window the more impressed I was with how the woman working the window was handling everyone in line. She had a calming smile and a genuine interest in every case. She was unbelievably helpful and knowledgeable. I immediately thought about Proverbs 15:1, "a soft answer turns away wrath." Her gentle responses diffused any anger in the line, and by the time I got to the window, I was calm. Barely holding onto my tears because that's usually what happens to me after my blood boils, the water works begin. I asked her for an application and showed her the termination notice. She said to wait and someone would be with me soon. We waited. My older son and my daughter were making friends with the other children in the office. My older son was having a conversation with a girl who looked about his age about how boys play baseball and girls play softball, but she knew a boy who played softball, and he had a girl on his baseball team last year. They were smiling and talking, making the most of the situation, actually enjoying themselves. It was about this time, I checked my Facebook status. Remember I vented before leaving my house. There were comments from friends offering encouragement and prayer. I was suddenly overwhelmed with peace, and extremely embarrassed by the fact that I got so angry in the first place. And, by the fact that I had to vent my frustrations on Facebook.

During this peaceful moment of clarity, I was reminded of a question Jackson asked in church that Sunday. Jackson asks LOTS of questions, mostly pertaining to how 'real' something is. We're working on understanding the difference between fantasy and reality. He tends to lean more toward the reality side of things, and as it pertains to spirituality, I've long given up the Sunday School answers we grown ups often give kids his age. They seem to confuse him more than the grown up answers. [Case and point: asking Jesus into his heart, asking a God who is bigger than the earth, the universe and the boogie man to live in his chest would be painful and most likely result in an explosion.] He is definitely my kid. Anyway, one of the dozens of questions he asked during the service was, "is that what God sounds like?" Now, I did take notice of this question, and even thought about how precious it was, however, the full weight of it didn't hit me until that moment sitting in the DFCS office.

"Is that what God sounds like?" Yes, Baby, that is what God sounds like. He speaks to us through His Word and through His people. He speaks to us through His creation and His Spirit. He speaks through the pastor and Sunday School teachers that care for us. He shows himself in our moments of desperation through social media and the DFCS worker handling the window. He works behind the scenes in the hearts and minds of those around us to make things happen in record time, all to say He loves us and to remind us we CAN trust Him. He never drops the ball.

Jackson's caseworker came to the window. She gave me the paperwork I needed to get back to them, some had to be completed before we left making our visit with DFCS about 2 hours long. Things got tense there toward the end, DS batteries exhausted and other children to get into trouble with. However, that peace lingered.

It's funny how entitled we can become, and how offended we can get when something we feel entitled to is threatened. The Deeming Waiver allowed my son to receive therapy, paid for by the State, when we weren't able to pay, and rather than being grateful for what I had been given, I was quick to lay blame, point fingers and make accusations. How dare they terminate my child? I'll show them.

Later that afternoon I got a call from the supervisor over the Medicaid division that handles the Katie Beckett Deeming Waiver cases. One of those emails I sent out reached the right person. During my conversation with her, she apologized for the problem, confirmed it was a mix up between the two counties and she was able to reinstate my son's Medicaid benefits, immediately. They still need the review paperwork, but there would not be any lapse in care.

That's what God sounds like.

The Life of a Warrior Mother

The term 'Warrior Mother' is used to refer to mothers of children with autism. I've always been reluctant to call myself that because of how high functioning Jackson is and how much he has improved with therapy. There are so many mothers we've met on our journey with Jackson's diagnosis who seem so much more worthy of that title, but I've recently felt more overwhelmed and exhausted than ever before. Even in the ordinary every day things I've felt the struggle, and in this daily battle, I can now say I feel like a warrior mother. 

But, what is a warrior really? According to the dictionary a warrior is a brave or experienced fighter. In other places it is described as someone devoted to physical and mental discipline, always ready to stand and fight should they be called to do so. A warrior is someone with extensive training and ability. Our military puts it's recruits through difficult training and preparation in an effort to prepare them for battle. For when they're in a situation with only seconds to act, the military attempts to train them so they don't have to think about their actions, they can just respond with what they've been trained to do.

That type of training makes sense since most of what we do comes in the form of reaction rather than action. No mother decides to lose control and scream at her kids like a lunatic. In that moment she reacts to the frustration of the situation.

So, my definition of a warrior mother is a woman who is mentally, emotionally and spiritually disciplined, well trained, ready to fight for her children and react well in those moments she has little time to think about her actions.

That's a great definition, but what now? As a mom, where do I get my training? How do I discipline myself to react to the craziness around me in a way that would be appropriate and loving? This made me think about that old saying "garbage in, garbage out."

I was blessed/cursed with a perpetually curious nature. I want to know everything about everything, and I've found that the more I'm able to learn about something, the better equipped I am in dealing with it. So, the first aspect of a warrior mother would be in learning as much as she can about her child's condition from literature, teachers, therapists. Equipping herself with an arsenal of knowledge in how to deal with each situation.

Part of that learning should be spent in discovering and understanding your fears so you are better able to push through them. Every warrior can be described as brave and courageous. You don't have to be fearless, but you do have to be able to overcome your fears and do what you know you need to do.

Working hard to maintain your emotional strength is key. You can't take care of your child emotionally if you aren't whole yourself. This means finding those people you can vent and break down with, and many times trying to keep those feelings in check. It is often our feelings that defeat us. Everyone 'feels' like running away sometimes. Everyone 'feels' like they just can't take it any more. What you do with those feelings is what makes the difference between victory and defeat.

The most important training for the warrior mother is in her spirituality. So much of our physical, emotional and mental health depend on our spiritual health. For me this means studying scripture, seeking to really know Christ and follow His example with my children. I don't believe real change is possible without Him, and I strive every day to open my heart up to His healing touch. I have to make a conscious choice every day to believe He can make a better woman out of me, a better mother and warrior for my children.

A warrior mother faces each battle, no matter how small, with courage and resilience. She chooses not to let her child's diagnosis defeat her or her child. She chooses to fight every day believing progress is possible.

We can fight this, and we will succeed.