Susan's Blog

Sunday, May 16, 2010


Ned took Nat back and I am sad.  I pack up his bag and the feeling inside me was that this was so wrong.  So sad, mushing his crapped up pillow into the canvas bag.  His clothes, his bright colored clothes, and his messily folded jeans, all tumble back into the bag, that no longer smells like my home.  It smells like their detergent.  And why do they send him with so many clothes?  That makes my heart sink a little.  I know I am sighing a lot.  I imagine him unpacking the stuff, and jamming his pants into the drawers.  Why does that bother me?  Max does it, too — when he even puts his clean clothes away, that is.  Ben’s stuff rests eternally on his desk chair; the dresser seems to be merely a storage space for stuff he will never wear, all the hopeful Gap stuff in non-black.

They all make me sad.  I shouldn’t be sad.  So much to live for, so much to love. But I had children to have children — around me.  Now they’re not.

Why did Ned take him back?  Why didn’t I go with him?  It hurts me less to go sometimes.  And in this matter, I don’t think Nat really cares.  Sometimes I don’t want to draw out the non-caring.  It makes me tired.

You don’t get over some stuff; you get used to it, and then, suddenly, out of nowhere, even on a gorgeous May day, the wound is opened.  Not fresh and flowing like it used to be, but dull and achy, like a phantom limb after amputation.


I know exactly how you feel. My oldest of 4 girls is severely handicapped. She went to residential school when she was 7 1/2. It hurt terribly to send her, but I realized that having her home was no longer productive for her and was very stifling to the rest of the family. I worked very hard to help Rebecca, but my efforts had reached their limit. I knew it was time to let someone else help her. Every month I would bring her home for a weekend visit, and then drive home crying after returning her to school. It always hurt so much, and maybe that’s why you don’t go for the ride back.

Now Rebecca is 32 years old and living in a very comfortable group home. She does not expect to go home with me when I go to visit. She is comfortable in her own home. She has her radio and music around her and she is content. To remove her from this comfortable environment would serve no purpose but to perhaps eliminate some inner feeling of guilt that all mothers feel when placing their child in a residential setting.

I remember when I used to bring Rebecca home for a visit. She was suddenly thrown into confusion. The surroundings were different. She would walk around confused and disoriented … out of her element. Even though she was back in her home with the family she used to live with, it no longer felt comfortable to her. She had grown accustomed to her residential school.

I still remember the earliest years when she was all smiles and full of innocence while living at home with us. Then I remember the hurt and confusion on her face when she first went to live away. I will never forget the sadness or the confusion. But then I think of how she changed years later. It was almost like a reversal of rolls. Suddenly, she was feeling misplaced when she came home for a visit and I knew that she belonged with her new family … her group home family. She is content and well cared for there. I would never dream of removing her to satisfy any latent guilt I may still have now. I visit Rebecca once a month and spend about an hour with her. She acknowledges my presence, but then goes about doing whatever she was doing before I arrived. She is content to see me but seems to be happy in her own home now.

After a visit, I return home to my other daughter who has high functioning autism. Marisa usually asks, “How is Rebecca doing?” Marisa is very capable of expressing herself and she has clearly informed me that she wouldn’t want to live in Rebecca’s group home, but is looking forward to living away from her parents some day “… after I graduate!” she reminds me. She wants to live with friends like herself, perhaps in a supported apartment or a small house with some of her friends on the autism spectrum who are higher functioning than Rebecca. Now how nice is that?

— added by Sherry Rubin on Monday, May 17, 2010 at 11:02 am

The “man Nat” that you write of has come so far from the “child Nat” that you wrote of, and I hope that is some solace to you. You seem to be handling the whole separation thing well. My oldest is seven, I can’t even imagine being there yet…

— added by kim mccafferty on Monday, May 17, 2010 at 2:54 pm

My son has been living apart from me for almost 12 years. I pick him up every weekend, but on Sunday, my heart sinks driving back to his residence. I know that most of the time he is content there. There is no one asking him about his day or how he is feeling, like I tend to do. He can focus on things important to him in his room. But….the quality of his care fluctuates like the weather. And due to budget cuts, choice is limited in terms of what activities he can participate in. We need to be vigilant and lobby for increased funding that can provide a more secure life for them after we are gone.

— added by Jane in Wisconsin on Tuesday, May 18, 2010 at 2:07 am

I’m so sorry, Susan. FWIW, I think writing a book about making that decision, like you talked about, might be really cathartic.

— added by ASDmomNC on Tuesday, May 18, 2010 at 12:07 pm