It’s now been a year since my daughter was diagnosed with autism. It was a diagnosis met with mixed emotions because while I finally had answers to why she wasn’t talking and why she wasn’t developing the way we expected her to be, I would be lying if I told you it wasn’t devastating to hear this news. It means that she won’t just outgrow this non-speaking phase; she may never communicate in a traditional verbal way. It was a difficult blow to take.
I am the grammar lady; it’s my thing. I love to talk; that’s also my thing. Over the past year, I’ve had to learn how to communicate with a little human in non-traditional ways. We use pictures, gestures, some sign language, and I’ve had to learn how to decipher different pitches of screams in order to communicate with her. It’s been an arduous adventure in patience and perseverance I didn’t know I needed.
Over the past year, we have been very fortunate to go through this with a team of professionals: special educators, paraprofessionals, pediatricians, developmental pediatricians, psychologists, occupational therapists, speech therapists, physical therapists, and an amazing team of behavioral therapists. I am grateful to these amazingly patient and kind people who are helping her grow every day. While her journey may appear to be a slow one to outsiders, I know she is making incredible strides to be the best person she can be. She has taught me to cherish and value these small steps and to celebrate them as the huge victories they are.
I am impressed by my daughter’s inability to speak in complete sentences, yet being able to tell me what she needs now. She uses color names to describe most things. As I’m sitting here typing this, she’s telling me she wants “juice” and wants the “red” one–the juice box in the red container is what she’s seeking. I would love for her to say, “Mommy, I want an apple juice, please.” However, that’s not our life. Maybe that will change one day and maybe it won’t. That’s what I’ve had to get used to: the unknown development future and being okay with that.
Sadly, ensuring my daughter’s progressive development hasn’t been the only battle I’ve had to encounter this year. I’ve also been battling the loss of insurance where I live. This summer, I found out my daughter’s health insurer would be leaving my state. That in and of itself didn’t alarm me too much as there were other insurers. Then I found out they were leaving, too. Now I am stuck in a county that has no health insurance options that cover my daughter’s very necessary therapies. This is the first place it’s happened in the country and no one knows what to do about it or how to fix it. You can read more about it here: http://www.politico.com/story/2016/08/the-county-obamacare-forgot-227251
I don’t want to get into a debate about the politics of health care laws and how we got here, but I will be very clear about my factual position: My daughter would not be insured and would not have the access to the care she requires to thrive without the Affordable Care Act and the insurance provided through the federal marketplace. It’s not perfect, but it’s the only option I have to gain access to the health care she needs at this time.
I have spent months writing letters to every politician I can from the mayor of my city to the President of the United States and as of today, September 1, 2016, I have zero solutions or options to fully insure my daughter in 2017. The solution I basically have at this point is to move my family and business to another county or state and hope that it doesn’t happen there next year. That sounds like an asinine non-solution if you ask me.
I still don’t know what I am going to do. I am working every day to come up with an actual solution to help cover my daughter, the other 10,000 Pinal County residents who rely on the same insurance options, and also the other people across the country who will need insurance when they face the same challenge my county is. I am writing letters, I am visiting lawmakers, I am calling US Senators, I am contacting insurance companies to try to find coverage; I am doing a lot of work to ensure my daughter’s development isn’t hindered by a political battle.
I am partially writing this as an update to last year’s post to let you know my daughter is doing great and she’s thriving at her school and in all of her therapies. I am also writing this to explain why I may not be creating as many new products as you’re used to seeing in Grammatical Art. I absolutely love creating and it pains me to not be doing it as often right now. Between my demanding day job, my daughter’s packed schedule, running the business day-to-day, and fighting a political battle for insurance, there just aren’t enough hours in the day to do everything. Creating has definitely taken a backseat. I will get back to it, I just need to get through all of this stuff first.
I truly appreciate your support over the years and I (and my daughter) would not be where I am without you. I look forward to returning to creating soon, but I need some people in Washington to cooperate first. Until then, you can still rely on all of the awesome existing products in the shop.
Resilience is a word I thought I knew. My daughter has taught me what it truly is at the young age of four. I must persevere as she does and get this done.