I would like to have a conversation with you about how to understand you better. What language do you speak? I’m pretty good at languages so I promise to study very hard to learn. I’ll even pull all-nighters if need be. I’ve looked in every bookstore, all over the internet, joined support groups, attended conferences, and have watched my son, O who is 4 1/2 and has autism. I can’t get a straight answer anywhere, from anyone. I see you everywhere, but I don’t know who you are.
Individuals whom are diagnosed with autism I see wrangling with your mere existence. Why are you here? Where do you come from? How can we get you to leave or at least better comprehend who you are? I see families torn apart, bank accounts depleted, parents who feel guilty because they think that they invited you by drinking out of plastic containers or immunizing their kids, people fighting to overcome you. It’s not just the one individual of whose life you are taking over. It is everyone who loves that person. Everyone.
Since you have invaded our life, here is a list of things that have changed for the not so good:
- my son hits and lashes out and tells me he hates me for no visible reason
- I find myself crying, not knowing what to do
- commitments, following through with things, and timeliness have been replaced with utterly flaky, disorganized, frantic and erratic behavior
- socializing or traveling as a family is out of the question
- we get to spend the money that we would normally spend on family vacation on doctors, therapists, specialty diets, vitamins, and supplements
- I yell a lot and it is exhausting
- We have lost friends (hopefully not because of the yelling…)
- I am scared when my son spaces out and is despondent
- I don’t know what the parameters are, or even a range
- feeling the constant judgement
Since your presence in our lives, here is a list of positives:
- we are learning to embrace what is here and love what we are granted
- being blessed with an amazing family and supportive friends make life so entirely rich
- I don’t care about what others think (almost to a fault)
- I laugh out loud, a lot!
- realizing how little control we have in the world is surprisingly empowering
- I have met some seriously amazing people who are on similar journeys
- we are all far more compassionate
- strangely, a constantly growing sense of inner peace
- a huge respect for the amount of patience and love that my husband has for me, for our children
- our lovely, adorable, sweet O
So, as you can see, although you bewilder us and we fear you, we embrace your presence and we are determined to better understand you because you are here. There might be diets, medicines, treatments, and therapies that make it seem like you’re fading, but I accept that you won’t be going anywhere any time soon and that’s ok because we are resilient. Every temper tantrum, every plate hurled at my head, every slap means that I’m that much closer to understanding.
I am fully aware of the fact that we are really new to this whole world. I’m looking forward to revisiting this list in a year from now, in five years, and in ten. I’m sure that I will have gained more insight and perspective. One thing I know without hesitance is that the positive list will grow longer and longer.
PS: you are welcome to throw me some clues now and then
3 thoughts on “a letter to Autism”
Wow. A very powerful piece, Karen. I’m in tears, but there’s also joy in there, for your triumph.
Wow again. your writings take away my breath with your courage, honesty and sense of humor. Oliver is indeed very lucky to have you and your husband in his life.
Karen, I am constantly amazed by your strength. This piece is humbling. You are on a powerful journey and Ollie picked you to be his mom. How lucky you both are to have eachother! I love you so much and am so proud and happy to have you in my life. Love you, Lisa