Susan's Blog

Wednesday, February 1, 2017

How Green Is My Natty

I’ve been here before. A fiery fissure breaking through my heart, Richter scale 6-8, the pain of saying goodbye to a son. This feeling is familiar territory with motherhood. But with autism there is an additional darkness in the chasm. My oldest, Nat, is 27 and autistic, and he is leaving today for a group home.

I spent the morning, and the day before at those home accessory stores, lost in a fog of pastel household goods and women, glassy-eyed like me, stroking carpets that hung like a row of furry tongues and other items they did not need. I was shopping for Nat’s new room: towels, bedside table, curtains. The only guidance I had from him was the word, “green,” in answer to my question of what color he wants in his room. And I was lucky to get this tiny chip of information, real information, from Nat in his otherwise barely intelligible symphony of sounds. I say symphony because his self-talk is so musical, rising and falling like a nursery rhyme, yet as complex as Beethoven’s Ninth.

In the store, I found myself looking at other colors, though. How would orange be? He likes his orange Gap shirt. Or yellow? He wears yellow tee shirts all sunny summer long. But does that mean that this room should have those colors? He said “green.” But still, there I was, wondering about the orange pillow, the splashy yellow dust ruffle. Always wanting to meet him where he is and pull him into more. Pull him to me. A la Greenspan/Floortime. Build that bridge, tote that barge. As if I am somehow the example of where he should be. I am so not.

I wandered the aisles thinking of Floortime, having thoughts like, “will they know him? why does he want to go, because he thinks he’s supposed to go, or because he wants to?” But mostly I felt like apologizing. Yeah, I’m really sorry for not being absolutely certain of what to do for you, Nat. I’m so fucking sorry that my body did not equip you with the easier, neurotypical DNA, those mainstream building blocks, that ladder to independence. You will always need others to watch out for you, and it can’t be me forever, and so I need to find others, I need to get you used to others. But Goddammit, there are others out there who are stupid or evil. Or indifferent. Lazy. I can’t imagine how they can be that way. I see red when I imagine a person not taking care of you right. HOW DARE THEY? You are a gift to them. You are utterly you, and yes, I’ll say it, you are pure. I’m not saying you are superhuman or an angel or any other such bullshit. You are special in that unlike Us, you are purely you, no guile, no artifice. Well, I know that the sign-song self-talk is an attempt to hide what is going on in your mind. Oh that is so dear. No, no, not patronizing you. I’m matronizing you, that’s different. When you vocalize, I listen with my deepest, quietest self. I heard “hooo-me” this morning and I knew it was “home.” Stretched-out words. You want to keep your thoughts private while expressing your feelings at the same time. You are infinitely clever. Who else could build what you have, with the tools you’ve been given?

Aside from this seven-month stint since July, Nat has not lived at home since 2008. This is a good thing. It was a good thing. He learned to live with others who do not love him or know him the way we do. He learned how to make his needs known, even with limited verbal ability. He acquired skills like food shopping, laundry, and other daily living activities. He developed beautifully.

But he also came home with mysteriously fractured ribs.  And though he did articulate a tantalizing few words explaining how it happened, we could not trust this for sure. The state investigation heard other such explanations from his disabled co-workers at his former day program, but deemed them “unreliable reporters.” Can you imagine being thought of that way? It chokes me, it feels like a kicked ass kind of rage. And yet that is how I sometimes think of Nat. I explain to doctors, “Well, he often answers just ‘yes’ by rote, because he either doesn’t know how to answer your question about his health, or he doesn’t want to talk, so ‘yes’ will get you off his back.”

So even when guys like Nat do express themselves in an effort to engage with us (the neurotypical world), they don’t really get very far.

And so, my dear, I will buy you green. All the green I can find. And I will hope that you will unfurl like the best of leaves, and find equally healthy growth in your new place.







Well said. I work with my daughter(34) with Autism on expressing sickness and pain, for balance of course happy, mad, frustrated with PECS. We read social stories that talk about what menstrual period pain feels like and who we can ask for Tylenol, a pad, or to just say I need to rest. For a time we used a Dynavox to express things. I realistically model feelings, frustration or pain when I actually feel them, so my daughter will learn from it. We talked about “Safe Touch”. The biggest challenge was/is to overcome societal (staff at programs and homes, the police, County Prosecutor, APS) bias when my daughter states pain/discomfort or clearly stated she had been touched in her private areas, threatened to be killed if she told the “secret”. I ultimately refuse to accept what others can not see or fathom, my daughter’s safety and verbal expressions have importance. I will continue to work with the Speech Therapist, on yes and no questions for increased reliability, tell her, her feelings are important,listen more closely to her verbal expressions, praise her for unique or appropriate expressions of feelings/needs. I believe that this is, in the long run a strategy that will let her know that what she has to say is important and can get her what she needs or wants in an appropriate way. I believe this can be an antadote to learned passivity or feeling invisible.

— added by Rowena Beatty on Wednesday, February 1, 2017 at 12:31 pm

Ouch. Sigh. Your words are treasures in my heart.

— added by Timmy's mom on Wednesday, February 1, 2017 at 1:44 pm

Fantastic! Wishing Nat all the best in his new home!

— added by lisa c on Wednesday, February 1, 2017 at 2:16 pm

Susan, your writing is gorgeous. Stole that from Barbra Streisand, but is is. Your Natty is just your guy. Sending my best to all of you. Can’t wait to hear all the good reports soon to come.

— added by Sharon Jones on Wednesday, February 1, 2017 at 5:39 pm

Sage green is very calming. It’s my favorite color! Try mixing it in to areas he will look at the most. I think he will adjust well, since he’s done this before. Hugs. – Candy

— added by Candy on Wednesday, February 1, 2017 at 6:25 pm

Sending prayers and good thoughts to you and Nat and your whole family. I pray that Nat loves his new digs, and that you all feel good about it and find some peace. Because Nat deserves nothing less!

— added by Laura on Wednesday, February 1, 2017 at 9:28 pm

Nat and Matt are similar is so many ways… We wish him and your family great success with his new home–and peace of mind. You continue touching our hearts and inspiring our work on First Place, Susan. You are a gift!

— added by Denise Resnik on Thursday, February 2, 2017 at 7:25 am

Oh Susan, as always I appreciate your honesty and willingness to share your situation with all of us. I value these posts as I begin to think about my own son’s transition. I hope Nat loves it, and all goes as smoothly as possible. Beautiful writing!

— added by kim mccafferty on Thursday, February 2, 2017 at 10:53 am

Beautifully written and brutally honest. Thank you for sharing these private and personal moments of your life. You put into words, what many of us feel everyday. Wishing Nat a seamless transition into his new life!

— added by Deb Martin on Thursday, February 2, 2017 at 11:14 am

I hate the yes answer or variations thereof. I think you are right it’s to get us to leave it alone.

Hopefully , this new place will work out perfectly .

— added by Farmwifetwo on Thursday, February 2, 2017 at 4:10 pm

As always, thank you for sharing. That last sentence of the first paragraph has me stunned! Nat is 27?!? I remember reading about his bar mitzva! You’ve been telling your story for a long time and I’m so grateful. Here’s hoping Nat’s new home is full of love, peace, fun, and learning.

— added by Suzette on Friday, February 3, 2017 at 6:08 pm

Painful, honest, and — as always — beautifully written, Susan.

— added by Liane on Tuesday, February 7, 2017 at 7:21 pm

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