Susan's Blog

Tuesday, August 13, 2013


Here we are at the Cape for the 23d summer as a family. My sons are 23, 21, and 15. And I am wondering for the first time if we are maybe getting too old for this particular vacation. It takes so much energy keeping everyone happy. I know that I should not feel so responsible for everyone’s happiness but I can’t find another way to be. I love them all so much and I want us all to be having fun. But Nat wakes up at 5 or 5:30, and goes to the bathroom four times in a row, and flushes and stomps out of the bathroom each time, doesn’t wash his hands, and shuts (slams) the bedroom door. He does not mean to make so much noise. He just does. But there is Max, on an air mattress in the living room because our rental does not have enough bedrooms. I thought we could cram in this one for a few nights; our usual rental was taken. This one is lovely, enchanting, clean, bright —  but small. Nat’s going home tomorrow and I’m looking forward to that! How shitty that feels, but that’s the feeling. I love him with all my heart and would do anything for him, but he is tough to live with.

So I get up with him and I whisper, “go wash your hands, Darling (I always want to soften any order I give)” and “walk quieter,” and “don’t slam the door,” but I hear Max stirring anyway, and Max stays up so late. Even when he goes to sleep early, it is late. Max says it’s fine, it’s fine. Okay. He’s a nice guy. Max is sunny and cool and breezy and fun and so… I don’t worry as much about his state of mind anymore because I see where he is, how he is. Lives on his own in New York, works, enjoys life. Ben, not so sure. He’s always been prickly. A very deep heart and a mind to match. Ben retreats into warm dark places and creates art and thoughts of brilliant shape and sometimes harrowing meaning. Ben sleeps through all of the early morning noise but the moment he is awake he mutters about Nat’s behavior. Ben’s happiness counts just as much as anyone’s and so I feel what he is saying. I know it is true that Nat should wash, I understand the germ situation Ben is imagining. I struggle between validating Ben and urging him to accept, grow, be compassionate. What I want is even more than that. I want Ben to love Nat.

Last night I realized I was feeling stress and not much else. I was worried about the next morning, not being able to sleep in for fear of noise, for damage control. It’s not damage; I know it could be far worse. I’m talking about tension, delicate sleep, irritating sounds, wobbly balance. It’s just so tiring. So before bed I told them all gently but honestly that I am feeling very stressed out managing Nat for everyone’s sake in the early morning.

Oh, my God, I should not give the impression that Ned does not help. Ned more than helps. Sometimes I think Ned does far more than I do, in physically being with Nat, steering him through the world. He also sits and looks at Max and Ben’s stuff and speaks their language. What do I do in comparison, the scut work, the cooking, cleaning, laundry, worrying. Together, I think, Ned and I manage — there’s that word again — and sometimes we even fly above that level, to enjoyment. Probably a lot, actually, but it is all so hard won.  I suppose everyone feels this way?

It’s just that I want us all to each get our chance in the sun and it feels like it’s up to me to use my five arms to hold us all out there to get at that light. But though they are strong, my arms are tired and there’s only two of them besides.


it’s interesting how moms can feel responsible for everyone’s happiness. Life has restrictions. Sometimes enjoyment comes *because* of those. We can’t make life perfect for our kids, any of them, as much as we want to.

— added by Dixie Redmond on Tuesday, August 13, 2013 at 8:24 am

I will quote a Police Inspector and his wife at a party we were at last summer… “just because you love someone, doesn’t mean you have to like them.” They were referring to some significant issues they had with one of their daughters.

It’s very true and there are many families with many issues out there. I only speak to my bro approx twice a year. We have little in common and I can’t claim to “like” him even as a child. But when we are together he’s owed my respect and the manners my Mother has drilled into both of us.

He may never truly “like” Nat, but in the end that has to be “OK” too. As long as he never harms him and learns to understand Nat is, who he is.

My Dh is a wonderful 1950’s Father. You know the kind that shows up late, eats supper, reads his paper and says good night to his boys. Drives me batty… but, in the end it’s allowed us a certain “separation of duties”. With the boys he has an opinion and no “say”. I run the house in the manner that keeps things smooth and allows for those “Father” moments.

Each family is different…. whatever works… works…

Can you tell mowing grass for hours and hours each summer makes for good “therapy” 🙂

— added by farmwifetwo on Tuesday, August 13, 2013 at 9:49 am

Susan have you ever tried having Ben choose just one morning where he gets up with his brother and goes through the routine and then does something fun with him? Just one, which would help you manage your stress and maybe give them a little time to bond? And then you stay in bed, somehow, and try and let them manage without you, without grumbling even? You never know what could happen. It’s your vacation too so evening out the responsibilities seems fair. Getting up at dawn could be pleasurable. The birds are out, and all kinds of soft early morning sounds are nice to listen to; I do it every day. Peace to you all, Michele

— added by Michele on Tuesday, August 13, 2013 at 10:19 am

Thank you.. xo

— added by Susan Senator on Tuesday, August 13, 2013 at 11:30 am

Very wise… gotta remember that!

— added by Susan Senator on Tuesday, August 13, 2013 at 11:30 am

Hmmm…maybe, maybe… Michele, so great meeting you. BTW Nat’s house is looking for a manager…????

— added by Susan Senator on Tuesday, August 13, 2013 at 11:31 am

Great meeting you too. What agency? You can email privately, I may have some good possibilities. M

— added by Michele on Tuesday, August 13, 2013 at 12:26 pm

Susan, Try to relax. take a yoga class. Shed the stress. Stress will not help anyone! You cannot please everyone and it really isn’t your job, even though you are a Mom. Everyone has to find their own happiness. That includes you so Chillax, as they say. Sit back and enjoy your vacation!

— added by aliza Dash on Tuesday, August 13, 2013 at 6:51 pm

Oh, you write the truth! It’s all so stressful and discouraging.

— added by Susan on Wednesday, August 14, 2013 at 6:42 am

I think many of us have unrealistic expectations when it comes to families. We have an idea of how things “should” be that comes from movies, TV commercials, Hallmark cards or whatever and then we feel bad that our houses aren’t as nice, our children aren’t as carefree and our extended families aren’t as close and then we blame ourselves.
You’re really doing a splendid job. Living with depression isn’t easy. It helps to try and appreciate what you have and to realize that the idea of everyone else doing it better than you is a myth encouraged by our consumer culture in order to make us feel dissatisfied so that we buy more stuff. We’re all struggling, in one way or another.

— added by Leslie on Wednesday, August 14, 2013 at 7:49 am

I do hate that word — “manage” .. Blech.

I do love you so for the way you put things.

— added by Jude on Wednesday, August 14, 2013 at 9:13 am

Curious as to why Nat doesn’t get to stay for the entire vacation with the rest of the family? And you’re looking forward to him leaving? Sounds harsh. I just can’t relate. My child is as severe as Nat and in addition has very involved epilepsy and other issues yet I still want him around all the time.

— added by huh on Thursday, August 15, 2013 at 9:15 pm

I’ll answer you, “Huh,” though I don’t think you are really asking. Nat is 23 and has a job so every day he takes off costs him real money. And yes, I was looking forward to him going back because as I’m sure you know, it is very very hard taking care of everyone’s needs, particularly in a very small place that is not set up like one’s home. Nat gets stressed, we all do, and it is hard to give him what he needs here. This stresses us all out — including him.

I should also add that there is no one on this earth that I would “want around all the time.” Not Nat, Max, Ben, Ned, Mom, Dad,… I don’t always want to be around myself, either! 🙂 I love them all, but, no, we all need our space, in one way or another. But I do love that guy with all my heart. But at 23, he does have his own life and eventually they all need to go home.

— added by Susan Senator on Friday, August 16, 2013 at 7:44 am

“Huh” is enjoying her/his (could be a dad but probably not) trip to Holland. The only trips I consider a vacation are girl weekends away with my best friend. My 21-year-old with severe autism did fine on even 12-day vacations when he was much younger. Somewhere along the line, he discovered his will and he became a less agreeable vacation partner. He isn’t motivated by the usual vacation stuff: sightseeing, eating out, hanging out. He wants to be with his stuff, most of which is at home. For us, vacations have good moments, but all in all, they are very stressful.

— added by Julie on Friday, August 16, 2013 at 9:17 am

Not all of our kids want to be with their families all the time, especially when they are 23, autism or no autism. Nat has his own life, which is FANTASTIC and he relies on it and enjoys what he does and he is a valued part of his community. His job is as important as anyone’s and he can’t just not show up or take time off any differently than anyone else does, which is good! That is real life and we want our guys to have a real life.
My daughter comes to visit and then she goes home and she does not have autism or anything else. I love to see her come and also love to see her go. My mom feels that way about us too;)

— added by Michele on Saturday, August 17, 2013 at 10:15 am

Just got to cape cod from Washington dc for week of vacation With rising college senior daughter über mensch and 19 yr old asd son. But with having to figure out “transition” for him doesn’t feel like much vacation. I have an advanced degree, but I dont understand “transition”. Shouldn’t we still be trying to teach and therapatize and not do vocational skills quite yet, which will turn quite boring if he will be doing it for the next decade. Any ideas for programs anywhere just to get a taste of what is out there for a bright, very immature kid Just came from vista program in Connecticut. Thanks.

— added by Sherri on Saturday, August 17, 2013 at 6:51 pm

“Huh,” you are clearly a better mom and a better all-around person than the rest of us. I freely admit I sometimes get tired of being around my family. Consider me shamed and humbled by your superiority.

— added by Leslie on Wednesday, August 21, 2013 at 7:33 am

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