Here I sit, two months later from my very first post, Love Anchor, and we are waiting, still waiting to hear back from the Department of Developmental Disabilities or now as they call themselves the Developmental Disabilities Administration. In the mean time summer has happened. Tim has been busy running “daddy day camp” as I like to call it. And I have continued to disappear every morning, coffee in hand, down the hill to the clinic. Had we started this application process for DDA a little earlier we may have been able to possibly have a little more time freedom as I like to say… but not this summer. I feel like summer is coming to an end to quickly. Doesn’t the earth’s axis in relationship to the sun understand or care that I still haven’t swam in a lake, roasted a few marshmallows by a campfire or hit the road for an adventure in my own back yard, the Inland NW ? Apparently not. One thing I know for sure, time does not slow down or stop for anyone.
Back in early June when Angel our newly appointed caseworker came to evaluate whether Elle qualified for services, we were told that we should hear something no later than early August. I knew that would probably not be the case based on life experience, however I was still cautiously optimistic. Consequently, as we have for the past 10 years or so, Tim and I have worked side by side to keep Elle busy and occupied. Funshine day camp has been on our schedule for the past several summers. There are 6 one week sessions at the tune of $175.00 per week. We have also signed her up for therapeutic horse back riding summer session which costs roughly $300. And lastly, we have tried to fill in the gaps with our ever so amazing “team elle” at $14 per hour. All totaling approximately “a lot of money” for two months of summer time activities and care in an effort to keep our lives balanced and to not totally lose our GD sanity. Expensive.
Not sure why I feel the need to vent this morning. Possibly because I woke up too early and have the hazy fuzzy tired brain thing going on. Or maybe it is because I just spent about 30 minutes in “haz mat.” mode along with my husband cleaning the adult size shit off of Elle’s body, giving her a bubble bath, stripping the linens, opening windows and starting a load of laundry with oxy clean all without losing my cool…. yet. We have come a long way. In the past, this was my recipe for a total GD melt down. However, over the years, Tim and I have learned to stay calm and carry on. We have just figured out it does no one any good to become enraged or bitter. Sink or swim, we choose swim. Since I am what Tim likes to call “the medical professional” I typically have the job of skillfully removing her feces filled pull up, wiping her down, and getting her in the tub. Tim is my assistant. He runs the water, brings me wipes, removes the trash bag, and tries not to gag in the process. As a nurse-midwife, I am very use to bodily discharge. However, I must say, I do not enjoy this aspect of being Elle’s mom. It is kind of a cruel trick the universe has played on me. Yes, I live for catching babies and don’t mind at all looking at slides of abnormal vaginal discharge under the microscope but wiping shit off of my teenage daughter’s genitals is actually not in my wheel house. Are you there God, it’s me Shelley ?
One of the survival strategies we have employed during these not so glamorous moments is to turn on some music. Like I have written in previous posts, Ellie is a musicophile. A few days ago, because yes this same scene played out on Tuesday morning as well, I searched my iTunes library and selected a little John Mayer. I had to chuckle, as I was wiping the shit off Elle’s inner thigh, Ellie was singing along with John. ” I keep on waiting, waiting, waiting for the world to change”. Ahhhhhhhh yes. I am waiting for the world to change. I am waiting for DDA to determine whether or not it is still my parental duty to be my 15 year old daughter’s care giver 24 hours per day, 7 days per week, 365 days per year. I wonder if they might hurry up ? I wonder if “they” know that when they closed state run institutions for children with developmental disabilities back in the 1960s that they ALSO promised to provide SUPPORT for families with challenges like ours. Funny. Other than public Education, Elle (we) have not received one drop, one penny, one second of care from our government. Our government that is supported by the 33% they take from our hours spent working. Our government that allocates billions of dollars to fund illegal wars, bails out white collar criminals, and wastes billions of dollars on meaningless shit… and meanwhile … meanwhile I am here waiting for an ounce of what I have paid into the governing institution that promised to care for the MOST vulnerable Americans, our disabled children. Does anyone give a fuck ? Just wondering.
A few weeks back we received a letter from DSHS stating that if we did not respond within 2 weeks all funding for our daughter would be stopped. I had to laugh because Elle does not and has not received any funds… ever ! Because I am motivated to see this process through to the end this time, I diligently called our assigned case worker Angel to see what this letter was about. Notice I said “this time”. When Elle was a toddler I tried to apply for services. Elle was evaluated and diagnosed as “eligible” based on her developmental disabilities but there was a wait list for funding in Washington state. We were #3,057 on the list. We waited for 4 years and then when she turned 7, we received a letter from DSHS stating that we needed to reapply. As you can imagine by this time I was over it. I had moved on. I did not want to waste time arguing with powerless case workers at DSHS, we had a life to live and a daughter to take care of.
As usual my call went straight to voice mail. I pushed zero which the automated voice mail prompted me to do in case of an emergency. I figured our situation qualified as an “emergency”. Luckily, I was connected with a young woman that could hear my distress over the phone and she promised to investigate. The next morning she gave me specific instructions which led to another 45 minute phone interview with a stranger in Olympia in which I answered all the exact same questions I had previously put down in black and white in early June when we initially applied for DDA. This was one of the more peculiar conversations I have ever had with a government worker. Apparently he needed to confirm our financial information even though funding through DDA is designed to be purely based on a child’s developmental need/diagnosis and not related at all to her family’s finances. It’s complicated. Medicaid is provided for the poor and disabled. The middle class, on the other hand, is left to fend for themselves even when you have a child with a financially draining birth defect through no fault of their own. However if you are lucky enough, patient enough and diligent enough to be on a wait list for years, not give up, and keep fighting for your disabled child and your family, you just might be rewarded with some respite services. Lastly, if you are of the 1% …well frankly, then don’t give a shit…. plus you do not pay 33% in taxes in fact you may not even pay taxes under our current stellar government system. The 1% have plenty of extra funds for private round the clock nannies. Hmmmm… I am sensing injustice.
He asked a lot of personal questions about our finances. Wanted to know if Elle had any resources. “No.” I replied. He wanted to know if I had recently transferred any of Elle’s resources to anyone else in the family. “No she has no resources I said. She is a disabled 15 year old girl.” Where does your husband work and what is his net take home pay ? He asked. “He works for Central Valley School District and I told him his net monthly pay” He replied. “Wow, is that all ? They sure don’t pay teachers enough do they.” Seriously. Why on earth do I have to subject myself to this assholes comments. I was silent. Fortunately I held my tongue, did not tell him to go fuck himself, and professionally finished the conversation. Keep on swimming, keep swimming …
So this brings me today, Sunday. Alex, one of the most awesome humans I have ever known, will be here to get Elle out for a few hours. I am planning to close my eyes for a few minutes during this time and hit the reset button. In the mean time, the waffle iron and Meet the Press is calling my name. Tim and I call this “church” and I am pretty sure God does not mind. God knows I connect with her and soak in her golden light in those moments that I draw a warm bubble bath for Elle to get her cleaned up and sing along with John Mayer. I absolutely adore hearing Elle sing along with Johh… “I keep on waiting, waiting for the world to change…” Me too Elle, me too….