4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Tuesday, October 18, 2011

"Journey to DX" series, part 4: helping (and being) a friend

Many times, it's a friend who approaches me, looking for ways to support or help a friend who is starting the autism journey. The story is really always the same, though the details vary some. Friend's child seems different, friend is struggling about what to do, what's the best way to help the friend.

Again, I feel somewhat unqualified to answer this because it seems to me it's one of life's major, most important questions--how to be a good friend. But, I can share my experience with you, qualifiedly, of course. I will share but ONLY if you promise to accept that I don't have the answer and have no idea what I'm doing. Below, I will give you MY experience; and, it is just that...MY experience and not a statement or judgment on what other folks are doing.

Deal? Deal.

Okay, so then let's begin.

Helping a friend who's experiencing autism
When someone is beginning an autism journey, she needs all kinds of help, including words and actions.

Words
How best to help really depends on where your friend is in the stages of his/her acceptance, acknowledgement, and grieving about his/her child's difference or difficulties. This is a really tricky one for you. Your friend might not even know where s/he is, so how on earth can you know?

I always found it very helpful and supportive when a friend asked thoughtful questions or noticed that we were struggling. Not in the "your kid's a mess, what the heck is wrong?" kinda way, but in the "I see that something's off and I want you to know that I care" way. I was so hysterically convinced that I was doing something wrong, that her behavior was MY fault, that I was hyper sensitive to any statements that were even remotely critique-like. But, when someone gave me a hug and said "I know it's hard" or asked me about her treatment, that helped me a lot.

It helped me to know that people knew that it was serious and real and not something we were making up. It helped, in the beginning, to NOT receive parenting advice. Someone who noticed the struggle, acknowledged that it was a struggle, and used her ears more than her mouth in our conversations was the best help.

It may, honestly, be easier for you and/or your friend to wait until SHE opens the door. Once SHE mentions her fears or concerns or struggles, then you can offer her support.

But, it's okay to not wait for the open door, and I will tell you why. I will tell you a story of a friend who changed my life. I met this friend when 4A was about 4 months old in the lactation support group at our local hospital. Turned out that she lived in my neighborhood. Turned out that she was a behavioralist who worked with kids on the spectrum. I could've cared less about the latter, honestly, in the beginning because I just needed another breathing adult to talk to during the day. We spent LOTS of time together when our girls were babies. Look at them!
It wasn't too long into our relationship that I began to notice how different 4A was from other kids her age...missing milestones, hitting milestones WAY too early, etc. Most notably, 4A never really rolled over, and she never pulled herself to standing from a sitting position. She never crawled.

I will always remember it. We were at my house, and this amazing friend had the courage to mention another friend who had gotten services for her daughter through our local early intervention services office. This courageous friend wasn't heavy-handed or didactic about it, but she planted that seed. She followed up with me and encouraged me after I made the call. She always confirmed my suspicions of autism, even when family or strangers or doctors doubted.

It is because of this courageous friend that 4A is doing so well. That courageous soul gave me the support and encouragement that I needed to help my baby. Early intervention, you remember, is an ASD kid's best shot at a more typical life. This friend's courage and love for me helped that happen.

Would I have the courage to do that for another friend? I truly hope so. It would require me to take a leap of faith, step out of my comfort zone, take a risk. I hope I would have enough love and courage and peace to do that for someone else.

Words are the harder piece of support to provide. If you can't be honest and say them without judging, then don't. Your friend is struggling enough, and she doesn't need dishonesty or judgment on top of what she's already working with. If you don't have the strength to say them, then think them or pray them or write them.

Actions
A parent in the early stages of his/her autism journey needs a tremendous amount of help. Your friend is spending a LOT of his/her time calling doctors, emailing doctors, waiting for doctors, following doctors' instructions, keeping data, hand-over-handing most tasks that other children do naturally. Now, that's what your friend is doing during "business hours." After-hours, s/he's trying to manage a dissolved household, figure out how the heck to pay for treatments, crying and grieving, researching, and having trouble sleeping. And, this all doesn't include the constant worrying and wondering about what's wrong, how to figure it out, and what'll end up happening.

The things I appreciated most were the offers of errands, the meals that were delivered to my doorstep, the folks who offered to wrangle my younger children during appointments. Now, here's another tricky part for you, my friend. This friend of yours may be isolating him/herself, either on purpose or unintentionally because s/he is living so hard in the moment. I remember that I had to check-out for awhile. It hurt too much to be around parents of typical children, partly because I worried that they were judging me but mostly because it made me so sad to see the things that I thought my child would never be able to do.

So, if your friend isn't around much or doesn't ask for help, that doesn't mean that she doesn't need it. You need no one's permission to drop a meal on someone's doorstep, you know. Everybody needs milk and eggs and bread: drop 'em off. Pop in to unload her dishwasher (this was the NICEST thing anyone ever did for me...thank you, Mom). Give her typical kids a break; invite them to join you on a walk to the playground. Text her on your way to Target and offer to pick up what she needs.

Don't wait for a request, just do.

This leads me, in my typical roundabout fashion, to why I feel so unqualified to answer this "how can I help?" question. It really taps into the larger life-lesson of what it means to be a good friend, a decent soul.

Being a friend
Wait a sec'. Thump, thump, thump. There. I'm up on my soapbox. Ready?

I have the great privilege of having a few insanely courageous friends in this life. Friend1 lost both of her sons and her husband before she turned 60, and she's had breast cancer...twice. Friend2 has three sons, one of who was born with a rare form of drawfism and has undergone a LOT of surgeries and has nearly lost his life in the process. Friend3 has 4 children; the first was stillborn, the second is now an AMAZING 14 y/o, the third died three years ago at age 8 from medical malpractice, and the fourth is a miraculous and healthy 3 month old. Here she is with my youngest baby shortly after her beloved third baby would've turned 9.

All three of these ladies have experienced nearly unspeakable grief. They all continue to get out of bed every single morning and keep living. All three of them are kind and loving decent, good people, despite their heartache. Every single one of them has said that they lost friends when hardship struck. Because they didn't know what to say or what to do, friends just faded away. That, for me, shows unbearable cowardice.

So, your friend is experiencing something difficult. You don't know what to say. Okay, try this. "I'm so sorry for your difficulty. I don't know what to say, but I do know how to listen." Then, sit there and listen, even though it's uncomfortable or hard or not fun. And, instead of just listening, try to listen AND imagine, WITHOUT JUDGMENT, what it's like to be her. When you end that conversation, make sure that you go back for another one, and another after that. Keep yourself present in her life, not just about her difficulty but about her LIFE. Never you mind your worries or fears that you'll say something wrong; you can always apologize for that later, or (shocking!!!) learn something new, imagine that! And, hard as that difficulty that she's experiencing is, she's still living life, washing laundry, buying groceries, cleaning toilets. Perhaps you can help her with some of that. Maybe when you're helping her, something funny will happen and you'll help her laugh. Imagine that!

People going through hard times are just people. They have good days and bad days. They cry and they laugh. Most days or moments suck, but there are some good ones. Help that friend have more good ones. It might be uncomfortable for you. Oh well. It might mean that you don't end up washing your own floor this week because you were too busy washing hers. Oh well. "And oh my goodness!," to quote one of my fave law school professors, whatever will you do if someone comes to visit and your floor is dirty!?!? Get over it. I should hope they see that dirty floor and say to themselves, "Dirty floor? She must be a super great friend."

Your friend is having a hard time; she's not dying. Or, maybe she is. All the more reason she needs you to love her and take care of her and be present in her life.

And there's this whole thing, especially amongst women, about "breaking friendships." I hear a lot of that in my meetings with my troop of 3rd grade Girl Scouts AND amongst GROWNUPS on Facebook. Oh my. So problematic on both ends and on so many levels. Break a friendship? Why? Because someone hurt you? Because someone doesn't understand you? Because someone didn't act or respond in a way you thought was appropriate? My goodness. As a VERY wise person once said to me....how arrogant are you to think that this is all about YOU? Truer words might not have ever been spoken.

Being a friend to anyone, let alone someone undergoing difficult times, might be hard, might be uncomfortable, and might mean that you realize how short life is and that that realization scares you. Oh well. Get over yourself and get going on being a good friend. Life isn't perfect, God knows, and neither are people or friendships. Complex as that all is, I plan to die tryin'.

1 comment:

  1. Hollie- you are so right. You have inspired me to mend a few bridges... :)

    ReplyDelete