Susan's Blog

Monday, May 16, 2011

Sad Little Mommy

It’s different.  Of course it’s different.  And here’s how:  because I don’t know what he knows.  I don’t know how he understands things, and that is a very unfair thing.  And that is why I think I will always be a hovermother.

We tried another House weekend this time.  It was bad timing because the House staff did not have him call for several nights last week and I was out other times.  I did not get to connect.  I hate that.  What does he think of that?  Does he care?  How far in does it go?  Or is it like Max or something, he notices but he’s okay, because he’s Whole?

No, I’m not feeling sorry for myself, and if I am, why the hell should that matter?  Why are we all so set on being Strong?  What is disgusting about being weak, or sad?  Goddammit, I am so sad.  I am supposed to be letting him get used to the Adult World (sorry for all the upper case, but that is how the words seem to me).  This is not something I am being forced to do, so please don’t tell me that I don’t have to.  If you do I will not print your comment.  Do not tell me, because you don’t know.  Ned and I are doing this.  We are doing this.  And I hate it.

And just because it makes me sad doesn’t mean it shouldn’t happen.  But I am not like others who can tell themselves truths and then move on.  I don’t know how they do that, how they convince their feelings to behave, to go away.  I can’t.  Mine just hang around, clinging to me, telling me what is real anyway.

My sadness is real, and Nat’s adulthood is real.  He is at the House, he doesn’t always get to call, and I don’t always get to call.  My other sons live their own lives and sometimes it feels like Ned really does, too.  And then it feels like I’m the only one living and thinking about Nat.

In some ways, I wish I’d never let him go.  Anywhere.  Back when he was first diagnosed — “diagnosed” makes it sound like they determined that he was sick, but he was not, he was still Our Nat, but he now Had Something.  Something he’d had along, but we didn’t know, and why did that have to matter?

Sometimes I wonder, stupidly of course, why does a person have to go away?  If he’s just not ready?  What the fuck is Tough Love?  That is an oxymoron.

Back then, I was told, like I am today, that he had to go.  He needed school, not his home all the time.  It was home that was not doing for him what he needed.

But home was me.  And Nat at home was our reality.  If I sent him to school, then didn’t it mean that reality had shifted, and he was what they were all saying he was?  I still can’t help it, a part of me feels that They changed him, with their stupid diagnosis and their special education.  They made it real by calling it a name.

Shit, I’m sitting here writing and crying.  Really, really quietly, pretending I have a sniffle.  Max is right next to me, working on something on his laptop.  Does he know I’m crying?  Is it just “Oh, there goes Mom again with a mood swing.”  Or what?  I don’t even know what his reality is, but you know, I really do know enough what it is, because there is feedback I can understand.

Why do Nat and I have to speak a different language?  Why is mine so word-heavy and his so much movement and silence?

So we all decide it is time for him to start dealing with change because 22 looms large and ugly.  There is no clawing it back to what it was, no matter how much I pull at it.  Just like school, it is just ripped away from me.  But I don’t heal.

I’m going there today to take him out for ice cream.



I had that same overwhelming feeling this weekend. We are gearing up for another ARD meeting today for my five year old and I was reading through all of the evaluations that they sent home. Seeing the “autism” diganosis in black and white was way too much for me to handle. I mean, I know it’s there but putting it to paper hit home VERY hard for me.

— added by Shana on Monday, May 16, 2011 at 11:36 am


1. What is right for you… is not right for me.
2. When you become the perfect Mother I want to know how you did it b/c mine are 9 & 11 and my coulda, woulda, shoulda list is WAY!!! out of control.
3. I will not look after mine in adulthood… and you should see the looks I get some times. Right up there with the one’s I get when I tell people I will not look after my MIL. My parents are looking after themselves… she should too.
4. It sucks. When we screw up, even when we do our best it sucks… period. Let me get out that list… ABA… Gr 1… Gr 3… and that’s just the little one… the elder has his own list.

At the end of the day, you have to do what is right for you and Nat. IMO leaving home is part of the process… but that’s me. My biggest fear is something happening to me and I don’t have him somewhere safe, settled and happy before then. So, mine’s moving out.

As long as there wasn’t a huge meltdown, I suspect Nat managed just fine. We don’t give them enough credit to adapt and manage on their own. Next time you’ll demand things are differently but then next time maybe you won’t have too since Nat’s managed the first time without all the i’s dotted and t’s crossed.

— added by farmwifetwo on Monday, May 16, 2011 at 11:54 am

I’m sorry you’re sad Susan. Being sad sucks. Makes me wonder if my mom feels sad. I wonder if you feel like a big scab is being ripped off of a wound on your body, and that big scab is letting Nat go?

I don’t have any words of wisdom here, but know that my heart goes out to you. I respect you a lot and I love how much you care for your boys.

Yes, the Adult World” is scary. I’m glad Nat will have someone there watching over him. I wish I had that.

— added by Bryanne Weaver on Monday, May 16, 2011 at 1:23 pm

I’m going to say to you what I wish people would say to me when I have these days: “I’m sorry”, and that’s it. Just sorry you have to deal with this at all.

— added by kim mccafferty on Monday, May 16, 2011 at 2:13 pm

@FW2: thanks for being a cool glass of water…
@Bryanne: thank you for your beautiful perspective
@Kim: thanks for getting it
@ Shana: hope it’s better soon.

— added by Susan Senator on Monday, May 16, 2011 at 2:48 pm

I won’t tell you that you “don’t have to” for risk of being shut off, but I will say that you are doing the right thing — including taking Nat out for ice cream. I am always the optimist, but you have to recognize that you and Ned could die tomorrow and, if you hadn’t set up Nat on his own trajectory, he’d be truly lost. Good job, but I’m so sorry you’re sad.

— added by Donna on Monday, May 16, 2011 at 5:57 pm

Donna –
I’d never shut you off, we go way back. You’re right, of course.

— added by Susan Senator on Monday, May 16, 2011 at 6:12 pm

You DON”T always have to be strong, And it is OK to have pity parties, because all of this Autism stuff does suck. Not that there isn’t beautiful moments interspersed with all of the pain, because there is beauty, but there is also a lot of pain. So feel it when you need to, and make no apologies. Sometimes we need to scream from the rooftops that we are hurting, and then we are able to climb down and move along through our day. Just know that there are plenty of people who are hearing you, and we have all been there. Autism sucks, but it is our reality, so we move forward. Doesn’t mean we have to like it, though…

— added by Terri Packard on Monday, May 16, 2011 at 6:36 pm

I hear ya.

— added by Susan on Monday, May 16, 2011 at 8:23 pm

Here’s a little virtual hug. So sorry this is rough.

— added by Suzette on Wednesday, May 18, 2011 at 9:32 am

I just found your blog today, it was stored in my favorites though I don’t recall saving it. These are the moments I know there is a higher power helping you with daily struggles. I have a 20yr. old son and I felt like I was reading my life experiences on the computer screen. Not just the usual experiences we share having sons so similiar in every way, but I swear you think the same exact thoughts I have dealt with for so many years. I love hearing others struggles because I don’t feel so alone and I love reading the great days too because it gives me strength when I feel like saying, “what else is there in this life?” Thanks for your honestly, it’s a breath of fresh air!

— added by lynda Visyak on Wednesday, May 18, 2011 at 10:32 am

Susan – I want to add something witty and uplifting, but Donna already nailed it, so I will echo her comments. You know, deep in yourself, that you are a strong, belly-dancin’, awesome book writin’, urban bikin’ woman, who was fast enough to get chased by a wild turkey and tell the tale. Make a list of the things Nat has taken on since being at the house – there is no small amount of tangible growth there. It IS the right thing, and I’m sorry that it hurts so much. Another virtual hug. Lisa

— added by lisa on Wednesday, May 18, 2011 at 10:35 am

I, too, have often wondered how to make my feelings about my son’s autism behave. Why is it so easy for some people to make the whole experience seem so, well, normal? It makes me feel like a weakling. I wish that I was able to repress them, like my husband, so that I don’t feel like I’m falling apart all the time.

— added by Alisa Rock on Sunday, May 22, 2011 at 7:36 pm

You just go ahead and take him out for ice cream whenever you want to! He is always your Nat!

— added by Alice on Thursday, May 26, 2011 at 1:01 pm

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