Susan's Blog

Saturday, September 6, 2008

Guilty

I’m sad about Natty. I can’t help it. I am so afraid our bond will grow weaker without daily contact. I miss him so much, even if we don’t talk or do anything of substance together. Even if he just sits on the couch and seems not to notice me. The point is, I notice him! And I feel our connection, even if he is quiet.

But I feel it less with him not being here. That breaks my heart. Talking on the phone and visiting there is unsatisfying. It is artificial. It is not what we’ve always done. I keep seeing him, imagining him, and then realizing he is not here and what does that mean? How did that happen, that now this is the thing we do? Just like when I first sent him to school.

When he was little and he first had to go to school, I felt kind of the same way. I felt like I was betraying him by sending him off to school, rather than just keeping him here with me. I felt like because I was sending him to a special needs program, it was making it more true that he had a disability, and that made me so sad. I felt so sorry for him, having a disability. I felt guilty. I felt responsible, because I brought him into this world, and shouldn’t I have seen to it that he had all he needed to live in it safely and happily?

Gradually I got over it. I got used to it. He grew into being a student. I got used to not having him here in the mornings. I could spend time with my baby Max. I didn’t have to think about what I should have been doing about the autism. I am so sorry to offend people with autism when I say things like that, but speaking as a mother who really wants everything for her kid, I needed to mitigate the autism, or the things that went along with it, like language impairment and sensory defensiveness and aggressive behavior.

So now he has to go and live apart from us to be with specialists around the clock, to help him make up for some of his deficits. It feels a little like he is being punished for being autistic. He doesn’t get to live here because he has to overcome and compensate just to survive out there.
And the thing is, he has that disability because of something physiological that didn’t connect quite right while I was carrying him around inside. That is why I am feeling responsible.

I’m so sorry to bum you all out, you other parents who are trying so hard to find hope and get beyond grief and guilt. I feel like I’m supposed to be some kind of role model or something, because I have been there, or been through it. But I’m really not. I’m not finished yet with him in this way. I want him back. I don’t want him to get used to it, because then there will be less to our connection together. Today on the phone he called the House “home.” That made me want to cry, yet when I told people I tried to be happy because I knew they thought it was a good thing.

I’m trying so hard not to be so ugly and wallow-ish, but the suffocating humid, gray day just got to me. Don’t tell me to snap out of it. Don’t tell me I’m being selfish. I’ll just delete you. I’ve got to say this. I’ve been carrying around this lump of disgusting emotion in my throat and belly, and I’ve just got to vomit it out onto this screen.

I want him back. It is too soon to let him go. It feels like another betrayal.

22 comments

You may not post this, but I have to say that you sound like you have a bad case of empty nest symdrome, made much worse by Nat’s “condition.” When my daughter left for college, I was bereft that we couldn’t connect. But, it was right that she left for college because it was time to do that. I think that your and Nat’s experience is similar to us mothers with normal kids. It feels bad when they leave and then it all works out as it should. He seems to be growing and that’s as it should be. And, boy are you right, today s***s.

— added by Donna on Saturday, September 6, 2008 at 5:44 pm

I don’t think Nat belongs in “a home”. I think he belongs at home. That’s your home. It has bothered me from the first time I read that you were going to place him somewhere.

Bring Nat home and enjoy him. All over the world there are people who do not leave home at 18. It’s a false belief that kids must leave home. They do not.

I don’t know if I feel as bad as you do, but I hate reading that Nat is living away from you.

— added by Ms. Clark on Saturday, September 6, 2008 at 6:21 pm

Another comment you may not want to post:

I have to admit, as the mushy mom that I am, I keep thinking to myself,”When her other boys leave home, she can have Nat move back in”. Probably not the best plan, but i am a big softy.

I know I should leave a “hang in there, it’s all for the best” comment, but what the hell.

— added by Mom to JBG on Saturday, September 6, 2008 at 6:41 pm

Thank you, Donna.
And Ms. Clark, I always have appreciated your different perspective and honesty.

— added by Susan Senator on Saturday, September 6, 2008 at 7:01 pm

I love your writing and have posted always as Anon many times.

Nat is a grown young man. What is difficult and wrenching for you IS empty-nest stuff and you will recognized it again when son #2 leaves home. From what you have shared in your writings Nat is flourishing under the new adult expectations which are wrapped in sound clinical practices. Is it mother’s love? No, but it is what all children get to experience as they transition to independence.

Referring to Nat’s new house as a quote “home” is insulting. It is Nat’s new home, no quotes needed as it is where Nat lives not where he “lives”. His childhood home is with his siblings and parents.

Hang in there, continue to give this new chapter a chance.

(Your) Anon

— added by Anonymous on Saturday, September 6, 2008 at 7:20 pm

What a poignant post, Susan. Wish I knew the magic words to say but all I can muster is that I’m so sorry you’re going through this. I’m one of those parents of a child with autism that is still trying to figure things out, and speaking for myself, don’t apologize for your feelings or for perceiving that you are making those of us with younger kids feel badly.

— added by Betty and Boo's Mommy on Saturday, September 6, 2008 at 7:44 pm

I love to read your blog. I feel like you are on the same path that I am on, you are just ahead of me. My son is almost 9 and every night as I lay with him I think of you and that N is not at home for you to tuck in at night and I get all choked up. I have been so impressed with how bravely you are doing this. I say go ahead and wallow if you need to.

— added by Randi on Saturday, September 6, 2008 at 8:06 pm

Susan, I won’t say that I understand how you feel about Nat leaving, that feels so artificial. I can understand your feelings of loss, being a parent of a child with autism. I can understand your feeling that part of you is missing when he is away, being a parent of a child with autism. I know your feelings as a mother, because I am a mother. Your feelings are so very, very valid to me in so many ways. What if you worked with Nat over the next months over what HE would like. Maybe there can be some way to really ascertain where he would like to live, would that make it better in any way? What if you knew he liked it there, or what if you knew he wanted to come home to you and Ned? Would that help? Just ruminating how to get past the point of just dwelling in the loss and questioning yourself. These are just thoughts… I just wanted to let you know that there are so many of us who will be faced with these situations in the years to come. It will be just as hard then as it is now. Penny

— added by Penny on Saturday, September 6, 2008 at 8:33 pm

Oh, Susan! Don’t feel like you have to be plucky and optimistic all the time for our sakes! We benefit from your posts so much as moms with younger kids with ASD! Max is 11 and I know we will be facing the same challenges so very soon. I think it would be so strange if you didn’t feel sad and conflicted about Nat’s not being there in your home. Today DID suck, but, as we tooled around Boston, trying to make the best of these pea-soup atmospheric conditions, we passed by the university and I thought about you, Professoressa, and my gloom lifted for a bit! Thank you for all your posts, be they cloudy or sunny! – TPeacock

— added by Anonymous on Saturday, September 6, 2008 at 8:37 pm

Susan, I have to agree with (Your) Anon.

We’re dealing with the second installment of the first wave of our own empty-nest-ness: Rachel has just started her second year at college. (It’s going very well: course registration this year seems not to have been the bumped-three-times hell she experienced last year, and she really clicks with her roommates in a much less cramped dorm-apartment.)

Rachel is venturing forth into the first phase of her life outside her childhood home, with (more, than last year, of) the right supports she needs at this stage of her life to be doing that.

We don’t know yet how or exactly when Jeremy will be making the first of his analogous transitions. He will probably need the extra years to age 22 in his high school program to complete graduation requirements and attain postsecondary and vocational transition goals. When he is ready to move into a different household than ours, whether his own or a shared one, likely balancing work and some form of postsecondary coursework, he’ll need support in many categories in which Rachel does not.

Nat’s move is different than Jeremy’s likely future move, and different than Rachel’s move, but similar in more ways than are likely making their presence known in your consciousness right now. Like Rachel, and eventually like Jeremy, what will make this move work for Nat is the right set of supports.

The separation isn’t the permanent unbridgeable thing it feels like at first. There will be visits home (already have been, so I’ve read here), some of them multiple days in duration.

No reason there can’t be *travel* together too: all 4 of us took a vacation to California as a family, and perhaps the best time Rachel had this summer was when we discovered upon arriving in San Diego for vacation that the tall ships were in town. She’s writing pirate fan-fiction with her friends at the moment, and she spent an extra day and a half all on her own prowling the tall ships in the harbor and chatting up crew and volunteers, happy as a clam. (Jeremy spent most of one of those days on his own at Sea World, too (with Susie elsewhere in the park) — a big step forward for him.)

Does Nat use a computer? Email or IM might be better conversational media than the phone, for between visits, because of their relative asynchrony. (Maybe Nat can get some help from staff or peers at his end of the connection, with putting words together, at least at first.)

Rachel and Jeremy IM when she’s at school. One of Rachel’s best high school friends is deaf, and IM is a natural medium for them to stay in touch during the college year. Jeremy IMs with some classmates too — and occasionally with his Opa in Detroit.

But yeah, bottom line, I think (Your) Anon is right. I’ll agree with Ms. Clark that 18 is not a sacred official magic number for the process, but it’s generally a good idea for young people likely to outlive their parents eventually — when the time is right and the supports are there — to transition to their own (solo or shared) household. (Or at least to be equipped to carry on without us, as for example Jane Meyerding and Larry Arnold did when their parents passed on.)

Let the bad feelings blow on out like Tropical Storm Hanna. The sun will come out tomorrow again.

— added by Phil Schwarz on Saturday, September 6, 2008 at 9:24 pm

What I love about you blog and your writing is your honesty. We have so much pressure on us to be the “perky Special Needs parents”. Don’t worry about us, we are so together, we are such heros. Also the pressure to put on a happy face for new parents. I get that but sometimes it seems so false. Your Nat is about 10 years ahead of my Asher and I appreciate your honesty. I pray that every day gets just a little bit easier for you. I think 100% peace at first is unrealistic but if each day is better….

— added by A Momma Just Trying to Make it Through the Day on Saturday, September 6, 2008 at 9:42 pm

I won’t tell you to snap out of it either, and I have to appreciate your honesty as well. I think you would be really, well, cold, if you didn’t feel this way! I give you credit because my guy is 10, and at this point the thought of him ever leaving us just makes me sick, but I don’t know how he’ll be in 8 more years.

I think you have to go with your gut. If you want him home and you know it won’t do any harm, bring him home. If you know deep down that this is all going to help him and you’re just being immensely sentimental like you were when he was little and you sent him to school, then let him stay, and do get over it. I have to tell you that everyday I battle with thoughts of sending my Casey to school, and have a full blown plan on home schooling him when he gets to 7th grade age because I can’t even begin to think about kids being mean to him.

Thanks so much for your honesty, and quit thinking everyone is expecting to be the poster mom for autistic parents! I like you much more for what you’re admitting than for what you think you should be saying and feeling!

— added by Bonnie on Saturday, September 6, 2008 at 10:16 pm

This is a try. It’s not irrevocable. If the time isn’t right, he can try again later. He’s only 18.

— added by Anne on Saturday, September 6, 2008 at 11:21 pm

I highly doubt that when my son Matthew, who has autism and is 11 will ever have a “home” or (whatever it is called), a place to move to when he turns 18 and that is just fine with me. I actually always want him to be home with me and his dad, and then hopefully have a job out in the world (even if it is just bagging groceries or whatever) I want him to be at home with me. And I don’t think that’s so terrible. Nat’s moving away has put and continues to put you through way too much pain and agony. So, let him live with his parents and siblings. The world will keep revolving and you don’t owe an explanation to anyone. As far as you “giving” Nat autism, now Susan, come on, don’t let yourself get that low. Here’s how it is in my house: Matthew has a twin Sister Hannah, who is an academically gifted child. She is a straight A honors student who is in advanced classes. So I have a set of twins, a boy and girl, one is considered a “gifted” child and the other has autism. Do you think I “gave” a talent for math and science to my daughter (trust me, answer is no–I am as dumb as a bag of rocks with math and have always hated science). Guilt is a self imposed emotion. I care about you too much, and it’s time to get another plan. You cannot continue to live with so much grief.

— added by Sharon L. on Sunday, September 7, 2008 at 12:42 am

Susan, you do not have to be Pollyanna sunshine all the time. You are MY role model, yes, it’s true, but part of the reason I look up to you is for your honesty and raw emotions. You just put it out there, for better of for worse, and share your life with us.

I don’t know what the solution is. Everybody processes things differently, as we autism moms know so well, and to me this is just you, trying to sort all this out in your own way.

I have to comment on the part about you “giving” Nat autism. I think about this a lot, as I firmly believe autism is genetic. I have to look at autism like I look at having brown eyes or curly hair. I gave my son his brown eyes and his small toes. My husband gave him his nose and massive head size (LOL). We BOTH gave him what eventually added up to him being autistic. My ADHD tendencies combined with my husband’s borderline aspie tendencies created a beautiful, brown eyed autistic boy. God gave you Natty for a reason, just as He gave me my son for a reason.

I am so thankful that Natty was born into your family, where he is loved and accepted and surrounded by people who truly care for him. That is all that really matters in this life, after all.

Prayers and hugs sent for you as you continue on this heart wrenching segment of that unpredictable, crazy journey called motherhood.

— added by ASDmomNC on Sunday, September 7, 2008 at 7:29 am

First off. You are a great Mom. Second. Are you unhappy that Nat is out of the house, or is Nat unhappy that he is out of the house? How is Nat handling this? I do not know much about empty nest syndrome, perhaps those who have mentioned it have a point.

I am very sorry you feel like crap about this. You have every right to.

— added by Someone Said on Sunday, September 7, 2008 at 7:38 am

I feel resonance with so much of what others posted, but I admit that as I was reading your soulful and honest post, I was thinking,” What does Nat want?” Just because he has difficulty expressing himself in ways that typicals understand, doesn’t mean he doesn’t have the same feelings and that he isn’t in touch with them, albeit in different ways. I know you know that, and I am not trying to be condescending at all, but maybe you can do a whole lot of procesing with Nat, and then with Nat and the whole family, to decide with Nat what is best for Nat and then best for the whole family, in that order? Maybe he’ll want to ride it out, try it for a set period of time, then reevaluate? Maybe you all will? Or maybe it will feel very clear right now that he needs to be home. Whatever happens, Sue, you don’t owe your readers or the world a certain attitude or a perennial smile or anything at all. That you share your process as much as you do is a gift.
Em’s Mom

— added by Anonymous on Sunday, September 7, 2008 at 9:26 am

My little man is 4. I am at the stage here where dropping him off at special ed pre k breaks my heart and I feel like I am abandoning him. At this point I can’t imagine him ever living away from his family. Last weekend my oldest son was visting and in celebration I had a bit too much to drink and fell asleep on my bed at about 6 pm. Now even though my guy had already had a nap he came and slept again, next to me, rather than be with the rest of the family and thereby missing supper as well. That is how he is with me and I don’t know if the umbilical cord will ever be severed. And oh the guilt that comes with that because every move I make seems to affect him so!
I don’t think there is anything wrong with maybe deciding to bring Nat back home. Whose business is it but yours and your families?

— added by eileen on Sunday, September 7, 2008 at 10:10 am

Susan, the one line in this post that jumped out at me is the line about feeling responsible for Nat’s disability. Today I woke up thinking about how sickly Henry was as a baby. I would sleep with his bouncy seat on the bed next to me so that he could be upright, and he would cough and cough and cough. Henry just turned 9 and I haven’t thought about that in years. But today I woke up wondering if I could have done something different then, something to be a better mother to him, and maybe his brain would work better today. I can’t post this to my blog, so thanks for letting me get it off my chest.

I’m sorry you’re feeling so low, and I’m sorry that we all depend on you as much as we do! 🙂

— added by gretchen on Monday, September 8, 2008 at 9:29 am

We’re still living through the early days (Jack is just 5) and I am just beginning to feel less guilty/sad/disconnected. I’m thankful you write about having these feelings. Although we are at difference places, I have the same ones and I feel less alone when I read that you struggle too.

I hope it gets better/easier very soon. From what I can tell, the only way over is through.

— added by Judith U. on Monday, September 8, 2008 at 12:18 pm

you need to remember why you decided that it was time. you have to think about the others in your house. maybe you need to just take baby steps-can that be done? easing into it-a few nights here-a few nights there-planned out on a calendar for him? I have no idea how those houses work as far as flexibility but maybe you need to rethink it.
How do his brothers feel? and your husband?

you know this is not supposed to be easy. you love him too much.

— added by Anonymous on Monday, September 8, 2008 at 4:35 pm

Susan you are a role model to me, but I’m not a child. You’re not the Tooth Fairy, or Santa Claus or even the Easter Bunny. You are walking a path a bit ahead of me and in many ways you’re marking the trail for many of us. So no, you don’t have to be the perky Autism Cheerleader and I sure don’t expect you to be cheery about what you’re experiencing.

I think you had valid reasons for the decision that you made and it’s hard when our children don’t tell us how they feel about things.

I’m also struck by the blame that you’ve assigned to yourself to carry. You are not responsible for Nat’s autism. You and I and everyone else on this list made the best choices that we could have for our children with what knowledge we had at the time. That’s what we do. If you feel that you’ve made a mistake with Nat’s current situation, it’s certainly not one that has put him in any jeopardy and you can reverse this one if you think that’s warranted.

I hope that you will be kind to yourself.

— added by Michaels Mom on Monday, September 8, 2008 at 8:51 pm

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