Susan's Blog

Friday, December 31, 2010

The Quiet, Abiding Love of Two Brothers

I’ve always lived in New England, so these long winter vacations at home are very familiar to me.  Memories of the whiteness and the pervasive cold are as much a part of my days as an extra sweater and socks.  And being a mother during winter vacation is perhaps the most familiar feeling of all — although now that I’m seeing that we all really do get older and things change, I am aware that even winter motherhood won’t always be like this.

My first child moved out and it was like he was ripped from my womb.  As melodramatic as that sounds, it felt that horrible to me.  I think this feeling was because I also needed him to leave, I wanted him to leave, and that fact hurt as much as having him gone.  Friends tell me that even when the child who moves out is “typical,” the feelings are mixed like that — you both want him to go and you are sad to see him go.  Each of us feels a different degree of readiness for that passage to happen.  I was ready for Nat to go, but that fact deepened my pain, because all my life I had vowed that I would not do that.  I would not Go Residential (interesting that I thought of it that way, the same construction as Go Insane); I would hang on to Nat and keep him with us.  So when I needed him to move out, it felt like a failure, a broken promise.

It is neither of those.  It was painful, but that didn’t mean it was wrong.  Nat’s move-out was the best thing that ever happened to him, other than going to Extreme Sports Camp for Autism, learning to ride a bike, going with me to Disney, and joining Special Olympics.  These leaps of his were such risks at the time, depending on his age and developmental stage, but they ended up being moments that propelled him into an utterly new way of being.

Faced now with my second child leaving, I find some of these dynamics recurring, shaped specifically around Max, but familiar and scary all the same.  Last night Max called us to say he was spending the night at his girlfriend’s house.  Max is a few months shy of 19, a young man who has traveled on his own, who works nearly fulltime, whose cap is feathered with many adult achievements.  It is not the first overnight he has had with Hannah.  But last night, Nat was very aware that Max wasn’t home.  He has become increasingly aware of Max’s whereabouts, of his new activities, like not being here for dinner, like driving and like staying out way beyond our bedtime.  Max’s presence is unpredictable, and Nat is adjusting to that.  Like the changing of vans, seasons, bedsheets, and breakfast routines, Nat notices the changes around Max with great interest and discomfort.

When Max called, Nat bolted downstairs; he seemed to have been waiting for this.  “Max will come home,” he said almost immediately.  He was straining to hear what Max was saying on the phone to Ned.

“Okay, you’re staying at Hannah’s tonight,” Ned was saying into the phone.  I looked at Nat in dread.
“Max will sleep home,” Nat said.

“No, Sweetie,” I said.  “He’s staying at Hannah’s.  He’ll be home tomorrow before lunch.  You want to talk to him?”  I figured maybe it would feel good to him to hear Max’s voice.  Max is always willing to talk to Nat; sometimes he talks to him when we are out, when Nat calls from his group home.  Max always has a smile in his voice when he greets Nat:  “Hey Nat, what’s up.”  Nat often answers him.  I think Max is tickled by how much Nat pays attention to him.  Max accepts this warm attention as naturally as he accepts all of the admiration that comes his way.  He’s a golden soul; he’s always been loved by the world, and he has always given love as easily.

I don’t think Nat can remember a time when Max was not there, because Max is only 2 years younger.  When you show Nat baby pictures of himself or Max, he says it’s Ben.  Ben is the only baby Nat has known.  Max was never a baby, in Nat’s experience.  Max was his Constant.

Max waited on the other end of the line to talk to Nat, but Nat did not want to.  We said goodbye to Max and I could see Nat tense up.  Here was one of the most familiar sights and feelings of my life:  all of Nat’s tremendous energy compressing into frustration and panic.  I get a flash of panic that I won’t be able to handle him, that all will spiral out of control.  I looked at his hands and I remembered his sudden pinches and scratches, the way he’d become like a human thresher, slashing at us rhythmically, unstoppably.

But no, that is not what happened.  I knew it wasn’t going to happen.  That stuff is in the past.  Nat is not a machine, he is a complicated adult whose understanding of the world is becoming both clearer and more layered.  “Sit here, Nat,” I said, reaching for his hands, trusting that they were just hands, even though they were curled tightly in tension at the moment.  He sat and said again, “Max will sleep here.”

Ned explained gently that Nat was not sleeping here tonight.  We both repeated the litany, that Max would be there, but would come home late morning.

Nat listened, his body bent over heavily.  At last he said, “Max will put on pajamas.”  This meant he was beginning to imagine Max sleeping somewhere else, and he was trying to work out all the logistics.  Where would his pajamas come from?  Did he have a toothbrush?  Unlike Nat, I do not want to know the answers to those questions, but I told Nat with great certainty that Max had pajamas there and that he would still be able to brush his teeth.  All would go on, differently but normally.

Ned brought out the chocolate, our family’s medicine, and Nat accepted some, but not with the usual enthusiasm.  He was definitely bothered by Max’s absence, saddened by it, but also trying to move on.  I only hope I can be as gracious when Max leaves in the fall.


What a beautiful writer you are! What a beautiful story of two brothers.

— added by J. Lorraine Martin on Friday, December 31, 2010 at 9:29 am

Love this story, Susan. Happy New Year.

— added by Susan on Friday, December 31, 2010 at 10:02 am

Susan, you always see what is before each of us with similar challenges – and you paint the scene with such clarity. Sometimes the picture is stark or sad, but it’s never without the beauty of a loving, human touch. Thank you for this.

— added by Marikay Tillett on Friday, December 31, 2010 at 11:43 am

Nat (and Max) are awesome. Happy new year to your family, Sue!

— added by Donna on Friday, December 31, 2010 at 4:02 pm

I don’t have the “gone” problem. If the elder is gone the autistic younger will go to sleep on his own. The one I get is when the younger goes to bed on time and the elder wishes to stay up – like last night – the younger is very upset. They sleep in the same room. He finally went to sleep about 90min later.

Happy New Year to you and yours.

— added by farmwifetwo on Saturday, January 1, 2011 at 7:52 am

I hope with all of my heart my two boys have the same regard and respect for one another down the road as your three clearly do for each other. Happiest of New Years to you, have so enjoyed discovering your blog this year!

— added by kim mccafferty on Saturday, January 1, 2011 at 10:13 am

Susan, it is so important that those of us on the “other side” of “going residential” hear your story, it helps with the compassionate understanding that is needed when we talk to and help families. Especially those whose children can’t communicate well. Connecting with those who will care for your child is key, although it can be difficult, especially at first.
I was on both sides once, in a sense, when my friend’s son came to our residential school. I had worked with him in a home program for 5 years prior. He came into the house I managed, so I was able to keep a good eye on him. I so clearly remember his mom and I hugging and both sobbing, me for her and she for him. I had the good fortune to know how the house he moved into was run and how well he would do there, which he did. And I also was connected to the family in a way that doesn’t usually happen. I knew to tell her about some of the things that might help, like how his first night away from home (other than some nights at my house) he asked for mommy and the car when it was time for bed, but how he settled down quickly and was very interested in having a roommate for the first time. I knew that she needed to hear he wanted her and home, but also how important the settling in part was too.
It is so difficult, and when people come to a situation from such different points of view, the communication is so important. And how poorly it can be done sometimes. And how ironic it is that those of us who work to facilitate communication with those to whom it does not come easily, have such difficult with it ourselves;) Happy New Year to you and your family, especially Nat, whom I have never met, but who I know I would just love. Michele

— added by Michele on Saturday, January 1, 2011 at 10:57 am

I wouldn’t count on the pajamas but it’s good that Nat was able to deal with his brother sleeping away from home.

— added by Sunni on Monday, January 3, 2011 at 6:56 pm


— added by Susan Senator on Monday, January 3, 2011 at 7:12 pm

Another beautiful post, Susan. You are hitting on all cylinders, girlie!! I have to agree with farmwifetwo, sharing a bedroom stinks for siblings. The recent unbunking the beds in their room also means that Jared is much more likely to get out of bed a million times to chase the cat. Poor thing just wants to get to his litter box in peace. The twenty to forty minute barrage of me growling “Go to sleep” or “GOODNIGHT” can suck the goodwill right out of you and them. Jared will bring me the cat, saying “Relax, Mom, calm down.” to officially say goodnight. Thomas used to seek respite in my bed, but that jabby little blanket-stealer wore out his welcome, but quick.

This weekend, Jared and I read stories without Thomas, and it was great. Jared chose Snow White and a book about swamps, estuaries and alligators, perfectly appropriate for a New Orleans native. I know that boy is reading much more than he is letting on! It’s exciting to watch his eyes follow my finger across the page. Grumpy is Jared’s favorite dwarf, and he has picked up Grumpy’s scornful epithet – He screws up his face, kicks at the ground and grumbles “women”. It is awesome.

Everybody have a great day and keep your pajamas handy! Lisa

— added by lisa on Tuesday, January 4, 2011 at 11:45 am

Beautiful, Susan! I DO understand. At about 19, our daughter tried it out on her own in her own apartment. That worked for a while. Then, she tried a group home and eventually we moved and she came with us…and she was back home. After a few years without her, it was obvious that she was better and more independent when she was out on her own. [Her father shares some of her traits and tends to want her home.] I found a facility in our community that took care of an elderly population and the director had an autistic son…she wanted practice!! Our daughter did well until she became infatuated with a sweet gentle man that did chores there. Well, to make a long story short, she’s married, has moved home again, and will try again soon for her own start at 30. This life, huh? I couldn’t have dreamed it!

— added by Caryl~marie on Thursday, January 6, 2011 at 10:21 am

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