Last week a very dear friend contacted me. Their nephew was heading to be tested…for what, they weren’t sure. Here is what she knew…
He doesn’t talk much
He has some peculiar behaviors
She’s a loyal reader and could easily read between the lines. I treasure her phone call. She simply asked, “What can I do to support them? How can I support them in this process?”
I didn’t call her back right away because I wanted to spend some time thinking. I know people act (most of the time) with the best intentions in mind. Knowing that I found myself thinking…how would I support someone? What did others do for us? What do I wish others would have done for us?
I think I’m ready – although this may be one of those posts that I go back and amend(this actually happens…so if my post is different from the first time you read, don’t be surprised).
Here are three days worth of thoughts…
It’s not a death sentence.
If a child is diagnosed with an autism spectrum disorder it is NOT a death sentence. Let me repeat – this child is a fully functioning human being. Different, yes. Bad? No. Life will go on. The world will not stop. So, if someone tells you about their recent diagnosis – please don’t react as if their child was diagnosed with terminal cancer. That is a real reason to be sad…ASD is not. Well, it can be a reason to be sad – but in a different way.
Listen, without judgment.
Part 1: Listening is the art of really paying attention. Put your phone down. Get off the computer. Turn down the music. Make eye contact. Listen. Don’t say anything until there is a pause for you to do so. Part 2: Don’t judge. When the diagnosis comes we *may* say some crazy stuff. Don’t be surprised to hear ‘Why me?’ or ‘This isn’t fair’ or ‘I just want my child to be normal’ Let it go – let us say the stuff we need to say. Please don’t hold me to any words I may say in an emotional moment.
Don’t try to sugarcoat.
I’m an eternal optimist. Trust me, I know how annoying it can be. This situation is no different. Please don’t say ‘Why not you?’ or ‘God only gives you what you can handle.’ or ‘It’s going to get worse before better.’ That is NOT helpful in any way. As parents, we’ll get there – but we have to in our own time. Day #33 – Why Me is a great example.
Don’t pretend to know.
If you have met one person with autism, you have met one person with autism. Reread the celebration week posts, seven children. Seven children who are very different from each other and very different from Tucker.
This is a tough one – because in our hopes of helping others we try to know, understand, and connect. I was just having this conversation with a friend last night. You know what we need less of? Psychologists and physicians making policy and writing about autism. You know what we more of? Parents sharing their stories. Those of us in the trenches – EVERY DAY. Living it, day in and day out – good and bad. If you want to know and understand what autism is…just ask us.
Offer to stay with my child(ren), and soon. If you know a family who is going through the diagnostic process, offer to stay with their children. Allow the parent(s) to have some time ‘off’ from the process. Do it. Do it out of the blue.
- Do it in the afternoon – ‘Hey Jackie, why don’t you let me watch Payton so you can go to Target. Spend as much time there as you want. If we run into anything I’ll give you a call.’
- Do it in the evening – ‘Hey Nikki and Matt, why don’t you let me watch the kids so you can go have a nice meal together. Be as late as you want. If we run into anything I’ll give you a call’
- Do it in the morning – ‘Hey Alex, why don’t you let me watch the kids and you can go out for coffee with a friend. Spend as much time there as you want. If we run into anything I’ll give you a call’
Give these parent(s) some MUCH needed time away from their reality.
This is something I have commented on fairly often: the impact of all of this on sibling(s). What can you do? Offer to do something nice for the sibling(s). A movie. To the park. Kayaking. On a walk. On a bike ride. Out to eat. We NEED our village – please be a part of that. Please offer…because we won’t ever ask. If you offer, we will forever be grateful.
Ask to help.
We may not take you up on it – but we may. Ask in a non-specific way. “What can I do to help you?” It may make us cry…because we’re a proud bunch who doesn’t like to ask for help.
Laugh with me, cry with me
Laugh with me when I laugh. When I’m laughing and telling you that yesterday Tucker was trying to eat the Cheez It’s box and I had to remind him four times to stop trying to eat the box…laugh with me. Laugh because I say, “Seriously…how many times do I have to tell my 7th grade child that cardboard is NOT a food group.”
Cry with me when I cry. When I’m crying and telling you that yesterday Tucker was trying to eat the Cheez It’s box and I had to remind him four times to stop trying to eat the box…cry with me. Cry because I say, “Seriously…how many times do I have to tell my 7th grade child that cardboard is NOT a food group.”
It could be the same story – and on any given day we may laugh or cry. Laugh because it’s ludicrous, cry because it’s a very real reality.
Be a patient friend.
I ignore calls and texts. I may not call or text you back that day or within a couple of days. Just be patient with me. Please know that there are very real moments that have to be dealt with in my home. If we’re in the middle of a transition or melt-down I can’t just stop and pick up the phone.
I’m sorry – I know I will seem like a ‘bad’ friend. Please don’t make me feel worse or guilty.
Dear friend, I love you. I promise you mean so much to me. Right now, my life is a bit overwhelming. I may not be ready. Please don’t push me. When I’m ready to talk I will.
Let me lead.
I may not want to talk about it at all – and it may be the only thing I want to talk about. Please remember that our lives have been transformed. Every minute of every day is consumed by this thing. I will try to control it – but I may have ‘mouth diarrhea’ about spectrum business. Please be patient…I’ll get past it and we can get to something else.
Love my child.
Please love my child. Do not give him/her dirty looks. Do not have expectations. Love them. Love them right where they are. Your judgement on how my child should look/act/talk only make us all feel worse. Trust me, we’re doing the best we can.
If you’re the praying kind, pray. Pray for the right physicians, psychologists, occupational therapists, speech language pathologists, physical therapists, and behavioral therapists. Pray that everyone wants the best for this child. Pray for the right set of therapy(ies). Pray for the right medications. Pray for good sleeping. Pray for the good and patient teachers. Pray for school administrators that are open and understanding. Pray for peers who show compassion and love. Pray for siblings. Pray for their safety. Pray for love and understanding from extended family members, Pray for us, as parents, that we can keep it together.
Pray that it will all be okay.