It doesn’t happen often, but sometimes I’m rendered speechless.
It happened on Thursday. A mom reached out to me, “My son was diagnosed this afternoon and was thinking that journaling would be a great way to deal with my grief and feelings.” (I don’t know how often this mom reads this blog…so she may or may not read this.)
Wow. That day. That day and this soon to be warrior mom sends me a message? On ‘THAT’ day. The day the marks the change from BD to AD (before and after diagnosis).
I replied with a small quip of thanks, love, and reassurance and told her I would get back to her the next day.
It’s now been three days. Three days because I didn’t know what to say.
I wrote in that first message, “It will be okay.” That was my ‘good mid-westerner’ taking over. I know better. I know in those first months it rarely feels like it will be okay. I regret saying that – because right now, for her, it’s not okay. I knew it after I hit send.
Now I’ve been quiet for three days. Not because I haven’t been thinking about her. In fact, quite the opposite. My thoughts have been filled with her and her son. My thoughts have been floating back to our testing and diagnosis days.
I wish they lived in my town because I’d ‘steal’ her away for dinner and drinks.
I think part of my paralysis is the overwhelming learning curve – and it happens to parents who suddenly face Type 1 Diabetes, or a learning disability, or an accident that changes the way you live.
So much to learn, so much to read, so much to manage, and…so much to tell.
The world of IEP’s.
The world of Occupational Therapy.
The world of Physical Therapy.
The world of Speech Language Pathology.
The world of water therapy, art therapy, music therapy…anything. Anything to help your child.
The world of sensory diets.
The world of behavioral plans.
The toughest world though? At least for me…the world of telling. The world of sharing.
This mom is already ahead of where I was…she reached out on THAT day.
I’m so honored that she reached out to me. I encouraged her to write it all down – the good, the bad, and the ugly. It’s all valid. Valid because she’s feeling it…if you feel it, it’s real.
I reread what I wrote on Day #236 – Best Intentions. This post was all about giving advice to someone who hears the news of an ASD diagnosis. In this moment I was thankful that I had recorded those ideas. A quick reminder of those pieces of advice.
- It’s not a death sentence. Life will go on.
- Listen, without judgment. Shut your trap and just listen.
- Don’t try to sugarcoat. It actually won’t be ‘okay.’ At least not right now.
- Don’t pretend to know. All autism is different.
- Offer. Offer to help in any way possible.
- Spectrum Siblings. Offer to spend time with the neurotypical sibling.
- Ask to help. Wait for their answer.
- Laugh with me, cry with me. Take their lead.
- Be a patient friend. Things are going to get hairy.
- Don’t push. Wait for them.
- Let me lead. When they are ready, be ready.
- Love my child. Don’t judge their child in any way.
- Pray. If you’re the praying kind.
I finally replied. It was simple. First, an apology for the delay and an admission of humbleness and ‘not knowing what to say.’ Then, “Tell me about your son. How are YOU doing?”
I’m sure you’ll be reading her story soon. In the meantime, here is my message to the newest warrior mom.
Welcome to an amazing community of advocates. Never doubt that you can, and will, change the world – even if it’s just your corner. Your son is depending on you.