Susan's Blog

Tuesday, November 9, 2010

Guilt is a two-way street

I sometimes wonder if guilt is the most universal of emotions.  Every religion/culture likes to claim that it has the market cornered on guilt (Jewish mothers, Irish Catholics…).  But is there anyone who carries more guilt around than a parent?  From the moment we know what’s going on in utero, we start thinking about what we are supposed to do and what we did wrong.  Did I take my prenatal vitamin?  Am I eating enough fish?  Am I eating too much fish?  What about the wine I drank before I even knew?  And then the baby is here and it’s all concrete guilt, the daily stuff like, “Is it okay that I let him cry so much?” and “Why won’t that kid shut up?” All the way to:  “Was I present enough for him?”

As both an autism parent and a non-autism parent, guilt is just part of my daily habit, as familiar to me as my own face.  “Does Max realize that I want to talk to him but I just don’t understand so much of the technical stuff that occupies his life?”  “Does Benj feel like I care about Nat’s rights more than his?”

And then there’s Nat.  All of his life I have felt a vague, slightly queasy guilt, for the mere fact that he has a disability.  Irrational, even offensive to say that, right?  I apologize.  Guilty as charged.  But truthfully, it’s a feeling that’s in the mix.  It’s not the only feeling, of course.  But my thoughts today are about teasing apart the strands of guilt that clump up the otherwise colorful joyous ball of yarn that is my relationship with my sons.  I always try to be honest, and so I have to admit that I feel bad that Nat — and his brothers — have a disability to contend with, that I brought them — especially Nat —  into this horribly complicated world rather unprepared.  All my advice to Max and Ben are crappy, seat-of-the-pants stuff.  Sometimes platitudes:  “I know, Darling, it’s not fair.  It’s hard sometimes.  But that is life; it’s not perfect, it’s hard and you are learning that at a very early age.”  Great, thanks Mom.

But Nat.  Nat got a shitty deal and it happened on my watch.  And more than that, there are all of the things that I didn’t do, or that I can’t, or won’t do.  I won’t go in for therapies that claim they’ll do everything from increase speech ability to making the patient less anxious.  Yes to the former, not so much to the latter. My Momma makes him less anxious.  A nice pillow makes him less anxious.   Neighbors turning off their fucking lights once it’s daytime makes him less anxious.  So if I have to drive an hour each way more than once a week and insurance won’t pay and no bona fide universities or hospitals have produced studies that demonstrate efficacy and safety, and if I’m not pretty much guaranteed some kind of very evident result, I am not doing it.  Or if I don’t like the way the practitioner looks at or speaks to my son, I’m out of there.  I am old enough at this point not to waste my precious time with my son to go in for that. Let me tell you, when your child gets to be 21+, you know that life is too short and you choose your battles.

At least that’s what I tell myself.  How I feel about it is quite another thing.  Most of what I feel guilty about is not understanding who Nat is.  There has to be some fiction and fantasy to how I view him, because he just can’t tell me what he is thinking for the most part.  His smiles are not always related to what’s going on.  His anxieties are sometimes inexplicable.  No matter how hard I try, to scrunch myself down into his head, I will never know if what I’m seeing is still my own head or his.

So I feel bad a lot about my relationship with Nat.  It’s good, but is it?  Is it enough?  Do I enjoy him the way I thought I’d enjoy my child?  I don’t want to say this, but the answer has been no fairly often.  He is a lot of work.  There is not a lot of tangible reward.  There is a lot of scrunching myself, contorting myself to be what he needs me to be and so there is so little surface area of me in the relationship.  And yet sometimes it feels like it’s all me.

Until Disneyworld.  Somewhere in that running around, from Tomorrow Land through Adventure Land to Frontier Land, I burned off some of that guilt.  We were just running, I was leading for once, he was following me, looking for me, listening to me for the next fun thing.  And yet it was a give-and-take:  “Nat, do you want to try the Dumbo ride or do you want another roller coaster?”  and then of course the rephrase, to be sure that he is not simply giving me the default answer, the second of the choices:  “Do you want to try a roller coaster, or do you want the Dumbo ride?”

And off we’d go.  Only once did I impose my will and refuse to do what he wanted:  stay till the bitter end for the fireworks.  No, I was getting cold and I did not want to be on a crowded shuttle bus back to the hotel.  I was tired, and I could not deal with all the staring that I had ignored the whole day.  No guilt, because look at what I had done.  I had flown 2 1/2 hours with my fairly deeply autistic son, taken him to this overwhelming amusement park, spent lots of dough, and shortchanged the conference I was supposed to be attending by cutting out as soon as my presentation was over.  I exhausted myself.

I totally enjoyed myself.  It was a completely selfish, indulgent, all-sensory enjoyment.  We went where we wanted, we ate what we wanted, we went to bed as early as we wanted.  We got along like old friends.  I had no guilt, not just because I had given him everything he wanted, but because I had also gotten everything I wanted.


That is a beautiful post 🙂

— added by Kate on Tuesday, November 9, 2010 at 5:00 pm

Powerful stuff in this post. Sounds like both of you had a great trip, tiring, but rewarding.

— added by Ed P. on Tuesday, November 9, 2010 at 5:46 pm

Thank you. This is wonderful and powerful.

— added by Shannon on Tuesday, November 9, 2010 at 7:24 pm

There are enough guilt trips in parenting without adding autism to the mix. I often feel like that myself- scrutinizing every single thing, second guessing myself and all the choices I made, and thinking that I could have made a different decision when I went the other way. In the end, if we do what we do with the best of intentions and with all our heart, then it’s got to be good enough.

I’m very happy for you and Nat. I’ve been dreaming of taking my son to Disneyland (the nearest one is in HongKong) and I am meeting a lot of obstacles. But I will persist. The next family trip will have him in there with the rest of our Asian over-extended family, I’ve promised myself.

Thank you, Susan, and God bless your mother’s heart.

— added by Kittymama on Tuesday, November 9, 2010 at 7:42 pm

just right!

— added by Timmy's Mom on Wednesday, November 10, 2010 at 5:58 am

Wonderful, wonderful, hugely important post. We have to remind each other to let go of guilt as frequently as we can, and try to indulge our own needs as often as necessary, in order to be the best parents possible to these amazing, but demanding, children of ours. I hope a tremendous number of parents read this piece, particularly at this crazy time of year!

— added by kim mccafferty on Wednesday, November 10, 2010 at 10:41 am

It’s impossible to know anyone totally and completely. I have a friend who is an identical twin. You couldn’t get any closer to another person than literally being their other half, now could you? But my friend says that often her sister seems unfathomable to her. That’s what growth is all about; we go from being tiny little seeds that are only dimly aware of an outside world to grown up people with busy lives and complicated desires and ever-changing emotions.
I applaud your honesty in writing about Nat. There are bloggers who insist that their autistic children are perfect just the way they are, even through they’re violent and self injuring, pushing their parents down stairs and attacking strangers for no known reason. I can’t imagine that any parent would be complacent when their child screams for hours on end and can’t be comforted. IMHO severe autism is a heavy burden. It seems like Nat has reached a place in bis life where he feels fairly comfortable and you’re largely responsible for that. He trusts you to look out for him and that’s great.. You both deserve to have more adventures together like your trip to Disney World.

— added by Sunni on Wednesday, November 10, 2010 at 10:54 am

Bravo Susan! You should do more of this stuff with Nat! It is healing, maybe for you both.

— added by Penny on Thursday, November 11, 2010 at 7:10 pm


— added by Lindsay on Tuesday, December 7, 2010 at 9:17 am

I loved this post….thanks for sharing!

— added by Stephanie on Tuesday, December 7, 2010 at 9:20 am

well said, you should never feel guilty about autisim, they are researching heavy now on what causes the symptoms. but i am with you good post.

— added by john lesnet on Tuesday, December 7, 2010 at 9:22 am

My daughter could have written this post. I totally understand your feelings and it hurts that I cannot fix things for my daughter and grandchildren – she has two autistic children. Thank you for sharing your story – it helps knowing that our family is not alone.

— added by Olive on Tuesday, December 7, 2010 at 9:33 am

Great post..its a constant heartache vs. common sense vs. what the hell for me. A typical eight year old and identical twins with autism guilt and regret can fill my days if i let them. But when i lay my head down if i have a honest memory of the day with each child where we connected on their unique ability then i can smile and know i did the best as a mom. Ditto the different voodoo therapies.

— added by jennifer pernell on Tuesday, December 7, 2010 at 9:33 am

This is my life more or less. I fucking hate autism!!! I love my boys, one with, one without…. Great post!

— added by jENNIFER on Tuesday, December 7, 2010 at 9:33 am

I can totally relate to this post. I have 5 children. 3 boys with low functioning Autism and twin girls that are typical. Guilt is my middle name and it weighs heavily on me every day of my life. I enjoyed your refreshing honesty about the subject. I also agree that if a therapy is not proven then I am not feeling it. Austin is 16 now he is nonverbal and life is too short to put him or myself through any more than I absolutely have to be. I don’t try to change who he is anymore I just try to make my boys the best they can possibly be whatever that means for them.

— added by Lori Collins on Tuesday, December 7, 2010 at 10:53 am

thank you, thank you, thank you

— added by Lenore Clemens on Tuesday, December 7, 2010 at 11:00 am


Last night I was going through a guilt trip about my son. Yours words are beautiful and expressed so much of what I feel – though my son is 9 and is an only child. Thank you for sharing with us all

— added by Stu on Tuesday, December 7, 2010 at 11:16 am

Hello Susan…..I totally understand where you are coming from. My son is diagnosed PDD (Pervasive Development Delay on the Autism Spectrum). He is 25 now….he holds down a job at a local grocery store bringing in the carts. I have another son who is a Senior in College and is very bright. Still to this day I carry around the guilt. You are not alone in these feelings. It’s hard to stop trying to figure it out. You are a good mom and there are many experiencing what you are feeling. You are not alone. I know that only eases the hurt and guilt for a few minutes but try not to beat yourself up. I should take my own advice on that. You are only human. Good bless you and your family, and know that there are many that share what you are feeling. I pray for a answer every day to heal this disability. Peace be with you. Your friend, Janet

— added by Janet Clark on Tuesday, December 7, 2010 at 11:18 am

Thank you for this post…so great to hear that stuff in my head out loud…your sharing of your guilt helps me with mine. blessings and love to you and your very lucky sons.

— added by Rachel on Tuesday, December 7, 2010 at 11:36 am

Wonderful words, story, truth, strength, parallel to my life in particular. Magical things happen in Disneyland…. There, we are equal with our children and have a common interest. Yes guilt sucks and it is hard to ignore eventhough it is “made-up” within ourselves. I find that if I am doing the best I can for my daughter, she is happy and not going without, then the guilt subsides… For today I have done a good job for her.

— added by Valerie on Tuesday, December 7, 2010 at 11:41 am

Susan, you voiced my feelings in a way I hadn’t even made sense of myself. Thank you so much for sharing this with us all. My son has autism and is only 4, but already the guilt can be overwhelming! THank you for validating my feelings and reminding me to just settle down and enjoy my son once in awhile.

— added by Kristen Piver on Tuesday, December 7, 2010 at 12:17 pm

Thank you for this. I have my days wherei wonder what i did wrong…long days…its nice to know i am not along

— added by cami on Tuesday, December 7, 2010 at 1:03 pm

I loved this–thanks! Sounds like so much of my life with my kids, right down to rephrasing questions so I know I’m not getting the default answer. When my spectrum kid was a baby I remember feeling like we were buddies; like we were a team. I hate that this feeling is so rare these days. But this piece reminds me of how great it is when it does happen.

— added by Jana on Tuesday, December 7, 2010 at 2:46 pm

Our Situation is is extremely like yours! My Daughter Molli, is 18 and also fairly severe on the autism measuring rod. In addition; I had no knowledge of being pregnant with her, until I was nearly 7 months along! Your visit to Disney also sounds extremely similiar to ours. We certainly have our own unique way of embarking on all experiences in this family!! Hope you will be able to surrender more & more of this “guilt business”. Sounds to me like you go out of your way to take your child into consideration [all of them]. You are discriminating in his therapies, you are trying your best to share in his mind & heart & understand his perspective. [& share in the place he’s at.] I feel inept with my daughter, at times also.[autism will do that to you, in its’ enormity.] We should both probably proceed with alittle more confidence!! You are probably getting alot more RIGHT then you even realize. Robin

— added by Robin Kessler on Tuesday, December 7, 2010 at 7:08 pm

A very good article to post – I have thought about this many a time and had never seen anyone talking about this before. I was born with a congential abnormality and am also the father of an Autistic son. As a young boy and then a young adult it was difficult enough to navigate the world socially without the added weight of my mother’s guilt. She thought she was progressive (1964 on)because she would talk openly to her friends, neighbors, relatives, my doctors, teachers and frankly anyone who would listen about my “problem”. I wasn’t blaming her and I didn’t know anyone else who was blaming her yet, this was likely an attempt at somethng cathartic for her – her talking it over – but frankly made it worse for me. I felt like I was constantly on stage and getting attention for something I just wanted everyone else to overlook. More importantly I wanted the opportunity to fit-in, be a part of the crowd and not standout. I can’t tell you how many times I heard, “Jeffrey come here and show so and so your arm”. Today, my Mom is 79 YOA and at Thanksgiving she was telling my kids about me getting picked on when I was little. No one was asking, just out of the blue, blah! IF you are a parent carrying grief and guilt around, don’t. If you can’t get past it, seek a professional’s help to get through / over it. Also, don’t let any of your children healthy or otherwise here you talk about the financial burden that comes with a child with dsabilities. The guilt of an adult is bad but the child with the disability has enough to deal with then to carry the parents also. We are human and that means we are all susceptible to disease and abnormality. God never promised a life on earth without problems. When we get to our destination we wll be made whole and that is for eternity. Disability gives rise to the opportunity for others to do good things and observe the greatest commandment which is to love one another. Don’t let GUILT get in your way living life and LOVING those in your family. It’s my hope that when other see or think of me that they are reminded to the higher calling we are called to which is to reachout to others and show compassion.

— added by Jeff Downs on Wednesday, December 8, 2010 at 12:48 am

As a a dad of a pdd(nos) 3 year old and 2 year old typical son I feel like you were speaking the words that my heart can not express. Very touching story. I was reading it while feeling guilty about Jesse(nos son).I know we all are doing awesome work as parents. Unfortunatly by morning I will need some else to remind me. As for right now I find solace in your words as well as those that posted a response.

Thank you and blessings
Jesse (and Aarons daddy)

— added by Jason Tarquinio on Wednesday, December 8, 2010 at 2:01 am