The Very Real Pain

Parenting children with developmental delays can hurt a parent's heart. Sometimes, it can even feel like our hearts are shattering under the weight of comparison between our children and their neurotypical peers.

I don't agree with a lot of Age of Autism. I think that the editors have a very real agenda and often an extremely warped version of reality. I think that many of the individuals who comment over there are off the deep end. What I do not doubt is that Stagliano loves her daughters. And I know personally how it can hurt a parent's heart to watch her child be absorbed in toys that are not age appropriate, to be focused on shows, characters, and toys that are all appropriate for preschoolers; it is an odd thing to watch an adult be interested in things suitable for four and five year olds. It hurts because it isn't supposed to be that way. It hurts, and it's a pain that deserves to be acknowledged.

Feeling that hurt doesn't mean the parent doesn't love, delight in, adore her child for who her child is. Feeling that hurt doesn't mean the parent is an awful person who rejects her child.

It doesn't mean that our time parenting is all pain, nor does it mean it's all about the parent's feelings, either. But parents have the right to grieve when a child remains at a developmental level that doesn't match his or her chronological age. It isn't supposed to be that way, and it's okay to mourn for the things we had hoped and expected. It's okay because it isn't the typical developmental track and to pretend that it is denies reality.

We can and should separate the egregious comments and the outrageous statements, from the very real, very personal emotions that parents feel as they are confronted with a very public expression that their child is developmentally delayed. We have the right to take a moment to absorb that punch to the gut before we table it and refocus on the positives and the hopefully accepting and accommodating network we are working with our children to build for them.

I am sure that many parents of children with disabilities have done similarly to what my husband and I have done: created a support system and an environment for our children that focuses on their strengths, surrounded them with people who love and accept them just as they are and think they are great. This is an important thing to do, and it allows everyone a great deal of joy. However, it also makes it abundantly obvious when they are outside this environment and it is their weaknesses that the spotlight shines on. And it is a kick to the gut, a heart-wrenching pain, and it is not a selfish pain of what I do not have. It is a pain for them, for what they do not have and the very real fact that the wider world is not made for them, not safe for them.

It is also a pain and a deep fear for what will happen when my husband and I are not there. I don't agree with much of what Stagliano does, but I absolutely understood where she was coming from with her post yesterday. It's a shame she didn't leave it alone, as it was, and felt the need to go back and add the bottom paragraph hawking herself and her book. It's a shame she lessened the strength of the post by going over to a blog that criticized her and set her friends upon the poster (all of whom appeared to be entirely too lazy to read the post itself and the posted by; his name is right there, for God's sake. Talk about an agenda!). It's a shame that in her comment at that blog that she pretended that her post was anything more than the fact that our children's autism can and does cause pain, but that it is very often a pain not for or about ourselves, but about our children, what they do not have, many never have, and may never know they've missed and for the way the world will view our children.


kathleen said...

No-saying you don't hurt for your child would be an untruth. Delighting in-adoring..and knowing that your child-that person, is an incredible being in their own right...and at the same time knowing that much of the world around them won't see or acknowledge that is hard and scary. Always in the back of my mind there is that worry about what will happen after I am gone..Which is why changing the opinions, the attitudes..the world, is so very important..

David said...
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KWombles said...
This comment has been removed by the author.
David said...

Edited repost by request:
I didn't like Kim's post at all. I found it denigrating to her child, and begging a lot of questions about the nature of hobbies and collecting. I still stop look at "toys" all the time. What I gravitate toward are collectibles, models, and building sets that don't raise eyebrows, but if someone my age showed a similar interest in toys for young children, wouldn't we be a bit hypocritical to judge?

Completely off-track, put I just finished and posted a LONG article on the DDI lawsuit at the Evil Possum "Cures" page. I'm going to see about condensing it for "guest submission" tomorrow.

Further thought: I wouldn't presume to say if the girl still "plays" with these kinds of toys. I have a couple shelves full of 1/6 scale exotroopers I made from Megabloks sets, and I couldn't play with them if I wanted to; when I move the "ratchet" joints, pieces start falling off.

christophersmom said...

Yikes, David, I can't believe what you said. I've seen other pictures of that girl and she's absolutely beautiful, but even if she weren't, it's so shallow to comment on other people's appearance, let alone on a child's. Maybe you should consider retracting that comment.

KWombles said...


Thank you for offering an edited version of your comment. I have deleted your first comment and mine following it.

Here is the relevant portion of my response left earlier:

I think that part of the problem here is an inability to separate your dislike of Age of Autism and Stagliano's choices as editor from this photograph and the very real pain she as a mother feels at seeing her daughter, who at the age of 15, would have, all things being considered, had very different interests were she not significantly impacted by her autism.

I don't know, David. This isn't so much about hypocrisy and judging and shouldn't be; it seems to me YOU are being judgmental and bringing in a whole stream of shit into the photograph and first paragraph that is YOUR baggage.

Denigrating? Okay, let's look over that. 15 year old who loves to play with toys for babies (which by the way, I wouldn't stand in the way of), a mom who loves her daughter and wants for her what all other teenagers her daughter's age have. Yeah, sorry, it's not denigrating, and if her daughter is happy as she appears to be, then it's obvious that despite Stagliano's rhetoric, that she has done her job as a mother to love and protect and safeguard her daughter (despite the OSR#1). Not a thing denigrating about that.

** I would add that while the snapshot captures her daughter looking at infants' toys, it isn't, I suspect, just about toys. Many adults have collections of toys, and I'll be the first to admit that one of the joys about parenting is getting your children the toys I love and getting right down there and playing with them.

It's about the delay, David. It's about the hurt that occurs in that moment of comparison between what our children would be doing if there wasn't a delay. It isn't about what I lack. It isn't about disappointment in a child. It is, I suspect, a pain that you simply have to experience to understand it. It's bittersweet and heart shattering, but it isn't a pain for me. And in a way, it isn't pain for my child(ren). My son has a wonderful life; he is happy, he is healthy, and he enjoys what he is doing. I delight in him. But, but, but...even though I would never point out to him the things other 20 and 21 year olds are doing, the very real fact is he isn't doing any of the things they are. And, when that is obvious, it hurts.

I suspect, and I choose to believe, that it is this pain that Stagliano felt in the store with her daughter. And it is a pain that has a right to be expressed. It has a right to be felt.

christophersmom said...

I agree that we have to acknowledge the pain and find ways to cope; wallowing in this pain is another story, that's why AoA doesn't help me. Also, I don't get why they are complaining about Autism Speaks not showing the painful side of autism. If anything they are pretty adamant and sensationalistic about it.

That said, parents feel this "lack" even when they have neurotypical children. Many times their children's lives don't turn out to be as good as the parents expected, and it hurts to see a child suffer or not live up to his/her potential (married the wrong person, dropped out of school, has an addiction, didn't have kids, has a chronic illness, etc).

David said...

My initial (deleted) comment was mostly in reaction to an especially inane comment from Kim defending OSR. All I really meant is that the kid is very pale.

Lyn said...

I just wish they wouldn't focus on their pain to the point that they become bitter and harsh.
The girl seems happy. I can stare transfixed at a bunch of insects or be in ecstasy over music.
I don't know. i worry about folks focusing on how things should be that they miss out on what a child is and who they are because they have this concept that doesn't really exist
Which can happen to people who aren't even autistic. Like a boy who hates sports, or a girl who doesn't want to be like her mother.
It's good to focus on how you feel,but sometimes...I wonder if expectations get in the way.

Catatab_Tabimount said...

This is a great post. Parents should never be attacked simply for grieving, since it is a simple human reaction to when they do not get a child that they hoped for. It is something they should try their best to overcome, since it does not have any benefit in the long run.

Being obsessed with child toys does not necessarily make somebody unable to progress, even though it brings that stigma. I still sleep with my stuffed animals and watch mostly kid's movies, but I do not think it makes me less mature than other 18 year olds. This girl probably has a lot more maturity concerns than just her interests. Her ability to learn would be the main thing to grieve about, rather than what she does for fun.

Some people argue that playing directly influences your learning progress, and that is why parents want their children to play typically. Play to children is just fun; play to psychologists is an important component to a child's learning process. The way some autistic kids play is thought to affect the way they learn, and early intervention is highly recommended.

Lyn said...

I'm 31 going on 32(and I get to see Dir en grey on my BIRTHDAY next month)and I still sleep with 4 snuzzly cuddly stuffed rabbits.
Mainly because I miss my real rabbit, but, yeah. I'm not ashamed to admit it.
Also, I love many young adult books, children books and cartoons. Nothing wrong with that if it makes me happy.
Autistic people evolve in their own way and have their own kind of normal.

KWombles said...

We got a bunch of star trek toys in the mail yesterday, and then went to town and bought some more to go with the bridge set; we then sat on the floor with the girlies and played star trek. We had a blast.

It isn't about the toys. I love stuffed animals, I love sci fi toys.

It isn't even about whether our children are happy or not--mine are and I am thrilled for them, and always will be, no matter how far they progress or fail to. If they are happy, what more could I really want for them?

It was about acknowledging (and yeah, not just for our children who have a developmental delay or other disability) that there are times that being a parent and looking at our children in stark relief and comparing where they are with what we had hoped for them causes us pain and heartache.

My post was about looking at where we have commonalities with the parents at AoA who have become stuck in that abyss in pain. Most of us choose to shake it off and focus on the strengths and joys. Those at AoA become mired in it. We can berate them for the ugliness they do based on that, but we should recognize and empathize, as well.

We have to be careful that when we argue against their actions that we are being fair, that we don't drag in everything else as happened with Stagliano's post. She was unfairly attacked on this, and it wasn't about the piece itself. When we fail to treat the parents and other individuals as fully realized multidimensional complex individuals, we do everyone a disservice.