Two Years Ago…

Two years ago, our lives changed forever. That’s when my daughter received her autism diagnosis. We finally had the answers to many questions we had, but honestly, there are even more questions I don’t know that we’ll ever have answers to.

I am not a “winging it” type of person. I like plans; I like having backups for those plans. What I like even more is having a backup to that backup. Autism parenting kind of throws that out of the window. Sure, I can make some plans like where she’s going to school and which doctor she’s going to see, but beyond that? Nope.

People ask me questions like:
“Will she ever talk ‘normal?’”
“Will she be able to go to regular school?”
“What caused her autism?”
“Will she ever live on her own?”

The answers to all of those questions are, “I have no idea.” That’s a hard reality to face at times, not knowing why your child is that way or if she will ever lead a self-sufficient life, but what I’ve come to learn is that it’s okay to not know the answers to these questions. I absolutely hope to find out answers to some of these questions, like what causes autism, but for now, we know a new “normal.” My normal may not look similar to 99.8% of the population–heck, it may not look like the normal to other autism families, either–but this is now our lives and that’s okay. It involves a lot of unknowns. It also involves a lot of hard work, but there’s a whole lot of love. There’s love from all directions: her family, her teachers, her therapists, her support staff, all of our friends.

We don’t know what the future holds for my daughter, but we are now surrounded by a massive team that will help us figure that out as we go.

To do my part, I am selling tees where 100% of the proceeds go to the amazing school she attends. It’s an amazing place that we are fortunate to have found and I’m unbelievably happy to have it be a part of our new “normal.”

This year’s designs can be found here:

The Autism Spectrum

Whenever someone hears that my daughter is on the autism spectrum, he or she typically asks me, “How autistic is she?”

They seem to be asking how severe the autism is. Is she really autistic or is she just a little autistic?

Well, it’s not that simple.

I admit that I used to think of the autism spectrum as a linear being: You could be severely affected or maybe a little and maybe somewhere in between. That’s also typically how it is described, even by professionals.

When my daughter was initially diagnosed last year by a developmental pediatrician, there were symptoms and behaviors checked off a list during the evaluation; if you met so many of the criteria, you were considered to be on the spectrum. In my daughter’s evaluation, if she met 4 of these areas, she made the spectrum. My daughter met 12 out of 13. So if you were to think about the spectrum as a lineal chart, 4 would be a little autistic and 13 would be severe, right? This meant my daughter was categorized as severely autistic with severe developmental delays.

This type of diagnosis shaped how I thought about my daughter’s autism: My one and only child has autism and on a scale of 1-10, it is a 9+. I thought she was severely autistic. Then Rebecca Burgess came out with a phenomenal comic and my entire perspective changed.

The spectrum isn’t linear, it’s more like a circle. You can be on-target or advanced in one area, but struggle with another. This not only shows areas in which a person can struggle, but it also shows their strengths; it’s a really great way to look at the spectrum. Also, it shows how each person isn’t just a number on a lineal scale; they fit somewhere on a very complex chart. Since this chart is a much larger space than a 1-10 lineal chart, one can also see how people on the autism spectrum can be so different from one another. The saying goes, “When you’ve met one person with autism, you’ve met one person with autism.” That’s because each person is so unique.

Now that we’ve completed story time, I will get to the point of this post. This is a great way to look at the spectrum and I want to get the idea of this better spectrum out there. That’s why I am going to sell shirts and totes with this exceptional visualization of the spectrum. I have been fortunate enough to be able to work with Rebecca Burgess to bring this idea to life.

As you may know, I designed and printed autism awareness shirts last year and 100% of the proceeds went to a non-profit school that specializes in the education of children with autism (and other developmental delays). Since it was a great success and we were able to raise $2,000 in a very short time, I would like to do the same thing this year. I want to sell these tees and donate all of the profits to this amazing school that continues to change my daughter’s life for the better every day.

You can get the products here:

autism spectrum new men's autism spectrum new women's v neck autism spectrum new tote

One Year Later

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.

One Year Later