It’s the email I usually get a few times a year. Four or five years ago, it used to come four or five times a month. I suppose, as my children have gotten older, younger moms are reaching out to other moms with young children instead of me.
Still, I have a reputation among my close friends as being someone who knows her stuff when it comes to autism. I politely get asked to speak with a friend of a friend or a neighbor or a co-worker or really anyone who could benefit from talking to me in their opinion.
As always, I accept the invitation without pause and take whatever time they may need to help them out. Were it not for the people who did the same for me, I don’t know where we would be. I always pay it forward.
Most of the time the conversation entails the same things: sharing our story, explaining the controversies (is autism psychiatric or medical, the role of medicine, genetics, etc.), and putting them in touch with people and organizations to help.
I always have to tell the person they will need to block off several hours for this conversation, and then of course, that this is our experience, our journey, and that nothing I am telling them should be construed as medical advice. It’s like I need a disclosure statement.
Having done this as many times as I have, you would think I’d become numb to the process. If only that were true. I can tell you precisely how and when different emotions will come into the room with us, and I can pretty accurately predict the questions that will be asked. Even so, it never gets easier. In fact, I feel like it’s actually getting harder.
It was one thing to realize that information that could have saved my daughter’s life was being discussed and scrutinized a few years before she was conceived. It’s hard to process how preventable her experience was, and it’s hard not to feel enraged that it wasn’t.
But that was over fifteen years ago. One of the moms I met with last weekend has a two year old. When you start throwing years around like 1999 or 2001 or even 2004, when this woman was probably still in high school, it’s difficult to put into words the level of disbelief and dismay they feel.
They knew when?
Both moms had flu shots while pregnant. Both moms had children under five. And both moms had the same questions I did when I was them.
How did this happen? What can I do? Who can help me? How do I know whom I can trust? How much will this cost? How long does this take?
And the most heartbreaking one… Is there still hope?
I had to laugh at that question only because it came from the mom of the just-turned-two year old. I reminded her that she is years ahead of where we were at that time. Years. And that there is so much she can do.
The other mom of an almost five year old had the same panicked look I remember having. She felt her window was closing, as if her opportunity to help her child had passed, another blow in the many that come with autism.
Both wanted to do something now. That’s the other feeling that permeates the room, the intense and compelling desire to act immediately.
Just tell me where to go! Give me the phone number! Can you call him? How long is the waiting list?!
When your child’s life is in the balance, every second that you could be helping them but can’t feels like a lifetime. It is torture to be told you have to wait. I remember that well too. I did my best to tell them they will be okay, but I couldn’t lie about how difficult it is in the meantime.
After three hours, which could have easily morphed into three more, I felt the mish-mash of emotions I always feel after these conversations. Sadness is usually the first one. Sad that this is still happening. Sad for them and their children. Sad that it is the same story over and over and over.
Wait, your child did this? And they had this? Oh my gosh, we had that too!
How the regression of a child is not well documented medically at this point is beyond me. I can tell you how 99% of them go based on the parents I have talked to as well as our own experience:
Drugs at birth (Pitocin, antibiotics, anesthesia); vaccines; colic; gastro problems; reflux; feeding problems; rashes; more vaccines; more problems; ear infections; respiratory infections; antibiotics; more antibiotics; yeast infections; more vaccines; constipation or diarrhea or both; more medicine; allergies; more sickness; more medicine; possible surgeries; more vaccines; gone.
It may not be all of that in that order, but some combination of that is inevitably almost always the version of events. And then of course, there’s always the child that was completely fine until one big regression at once. I haven’t come across that nearly as much, but it definitely happens.
And so after being profoundly sad and heartbroken, I usually get quite angry. I’m angry that this is still happening on a level that’s hard to put into words. Outraged doesn’t even do it justice. That then turns to disgust, a compulsion to continue speaking out, and a moment of silence where I pray for strength, for forgiveness, for these families, and for all of these beautiful children.
A text came in to one of the moms that led to the end of our time together. After three hours, her husband was having a hard time with her son and she needed to get home. She thanked me for giving her hope, and then asked if I have ever stopped grieving. She confessed how hard it is for her to be around other babies her son’s age and how she just can’t tolerate the constant reminder that he isn’t keeping up.
I told her I definitely grieve, and that it’s also a process. But I didn’t have the heart to tell her that no matter how much better your child gets, that pain never, ever goes away. You will be assaulted by it everywhere you go from now on...for the rest of your life. It felt too cruel to share that given how shaken she was, not to mention how early in this journey it is for her.
We exchanged information and the rest of us continued to talk for another hour. We discussed insurance issues and the difficulty in deciding when to get a diagnosis. This mom was well aware that the minute she had the official diagnosis, most doctors would write her off.
Her daughter has very bad medical issues, specifically tummy troubles. Without me saying a word, she knew that if she had to go to the hospital and told them “autism”, they wouldn’t even try to do anything. She had already been told that once.
We also talked about the craziness of how many children are affected right now.
Have you seen the amount of small yellow busses going through our neighborhood?
She was flabbergasted. The other mom and I, who practically grew up together, said the same. The idea that both of us have an affected daughter, as well as a mutual friend down the street with an affected son, and then these two moms who are in my friend’s life in important ways…well, it just made us shake our heads. No epidemic?
Do you remember any girl you knew ever needing a social skills group to learn how to make a friend? Or keep a conversation going? Let alone a whole table of them at one school? Come on!
No, of course I don’t remember that because it didn’t exist. And sometimes it feels like the only way to prove that is to keep having these conversations, keep speaking out, keep trying to hold those accountable, accountable.
That said I would be lying if I didn’t acknowledge it’s getting harder. Same story. Different year. Over and over and over.
I have to wonder on a daily basis, how much longer will it be until this story ends?