541 days ago was March 27, 2018.
It was also the day Scarlett was first diagnosed with autism. She received that same diagnosis two additional times–and oddly enough, it never got any easier. In fact, I think it only got more difficult. Every time you go in to one of those diagnostic appointments, part of you thinks that this will be the time they tell you that they made a mistake the last time–that there’s nothing wrong with your child, that she’s just going at her own pace and that she’ll catch up when she’s ready.
For us, those words never came. For us, each of those appointments meant the grieving process started all over again (see this post if you want to know what that looked like for me, but remember to extend me some grace). During that time, I remember being so angry anytime someone publicly proclaimed to be part of the “autism is a gift” camp. I remember reading an article that punched me in the gut–an article talking two things: first, about how autism isn’t a gift or curse, but simply is; and second, about how the way a parent views their child’s autism eventually becomes the way their child views their autism. I remember reading it and thinking that while the article was logical, it wasn’t practical. I didn’t believe that I would ever get to a place where I felt that autism wasn’t a curse on my child.
For a while, I hated autism and what it does to my child. In a way, I still do–because friends, while I love my child, parenting her is hard. On days where she threw tantrums and I’ve had to try and to keep her from physically hurting herself, it was physically hard. On days where I’ve had to pin her down for EEGs, it was emotionally hard. During times where I’d spent countless hours researching to make sure I knew my rights as a parent, it was mentally hard.
But friends, something’s changed.
For the first time in 541 days, I feel like I have some control over our circumstances.
For the first time in 541 days, I feel at peace.
Do I expect to still go through periods of times where my child’s disability shakes me to my core? You bet. But I know now that those waves of grief will be followed by periods of peace.
I think that there are several things that have happened over the course of this journey that have been the catalyst for my change in mindset:
- Overwhelming support. Friends, I am always so incredibly humbled for the love and support that our people have always shown us whenever we’ve been brought to our knees. I’ve written a post on that as well. Thank you for being our people. From friends to family to teachers to classmates to total strangers, I could not have done this without you all.
- Quality therapist/educators. I wrote a letter to our therapists here, and I should write another to Scarlett’s current teacher–we have been so blessed to have had some of the most amazing humans work with our daughter. That post says it better than I could here, but I cannot stress enough the importance of therapists and teachers who are 100% invested in your child.
- Learning about the #actuallyautistic community. I’ve joined some groups on Facebook lately that are centered around learning about autism from people who are on the spectrum themselves. It’s helped in two ways: it’s opened my eyes to a lot of things I didn’t know–like the fact that many autistic adults prefer identity-first language (autistic) vs. person-first language (person with autism), and that many in the autistic community don’t endorse the puzzle piece. Second, in these groups, I am surrounded by autistic adults who lead totally normal lives. They are completely functional members of society. They hold jobs, start families, seek higher education–they show me what life can look like for my daughter.
- And finally–the thing that sent me over the edge: A picture of my daughter playing with her best friend at school. Friends, I don’t currently have words to describe how thankful I was when Scarlett’s teacher sent me that picture. She took 5 seconds out her day to send me a picture, and those 5 seconds calmed countless hours of worry, fear, and heartbreak–for me, that picture is tangible proof that my child will not struggle alone. I have always known that (see point #1), but somehow, this was different.
In conclusion, I end in the same way I’ve ended many of my posts: thank you for hanging with me, friends. Thank you for supporting me in my dark days–I hope that you stick around for the bright ones to come.