Although I frequently want to blog about Adam having Asperger’s Syndrome I am stopped by the reactions that I get in real life. When I say that Adam does this or that thing, the person invariably says, “Oh he’s just being a man. That’s what men do.” I respond by saying, “No. This is not him just being a man. This is MORE than that.” And they dismiss me and my point of view. So I am going to make a disclaimer here right now: This thing that I am going to write about is not a MAN thing. It is a common Aspie thing. Yes, to some degree men do this thing. But this is MORE. This is a “Please let us find a therapist that deals with Asperger’s in married adults because some of these behaviors are putting a serious strain on our marriage.” In addition, this is something that makes Adam very sad. He knows that he does this thing, and he has no tools to control or change it. So he fucks up, I get mad, he gets sad and NO ONE is enjoying it. In addition, I have been married before, and I have dated before this marriage. I KNOW MEN, okay? This is not a man thing.
This morning our family had an outing planned. Adam tried to wake me up several times I was not functional. I don’t mean groggy and tired. I mean that my husband had to physically help me get to the bathroom because I was so stiff and in pain. My fibromyalgia is really kicking my ass right now. Eventually, Adam decided to take the children to a friend’s house to hang out and play games so I could sleep. He left around 10:30am.
When he arrived at the friend’s house forty-five minutes later, he realized that the frozen breast milk for Coop was still in a lunch box at home. For those of you not keeping track at home, Coop will be five months old in three days. He has not had anything to eat besides breastmilk at all ever. For me it is very important that Coop be exclusively breastfed. To illustrate what I mean by “very important” I need to explain that there are a variety of medications that I could potentially take that would reduce or eliminate my pain. Medications that I cannot take while breastfeeding.
My quality of life is diminished GREATLY because I believe that breastfeeding Coop is important. I have had to cancel or simply not schedule many social events due to pain and fatigue. From my point of view, giving Coop breastmilk is important enough to just deal with it. There will be many years of trying medications and attempting to reduce the annoyance of fibromyalgia. I only have one time in Coop’s life to breastfeed him. I make the sacrifice because I think it is worth the suffering.
Going back to earlier today, Adam realizes that he has no breastmilk to feed Coop. He is forty-five minutes from home. If he goes back home to get the breastmilk his plans are ruined. His friend has infant formula on hand. Adam needs to make a choice between giving Coop formula or returning home. He calls me at home but I am asleep and do not answer the phone. He wants to hang out with his friend so he chooses to give Coop formula. This is where his thought process ends and my brain blows up all over Twitter.
To you, this might seem selfish or short-sighted when actually it is a case of rigid linear thinking. Linear thinking in this situation means that Adam did not look at the problem with multiple points of view. The problem was feeding Coop, and in one option he had to drive home. In the other option he got to stay. He never even considered that there were other factors. In the following exclusive state-of-the-art representation of a decision model you will find what a neurotypical person will do when making a decision.
Neurotypical Decision Model
I apologize for the poor quality and penmanship, my hands have been really bitchy lately. You see how after considering the two solutions, there are additional items to consider? You and I would think in this manner. We would come up with numerous conditions under which each solution is employed. When Adam comes to a problem that he has never before tackled, it looks like this:
Solution A or Solution B? Solution B looks good! The End.
When Adam makes a decision between A and B, he is not thinking about the amount of effort I have put into exclusively breastfeeding Coop. He is not thinking about the medications that would improve my quality of life. He is not thinking about possible stomach discomfort that Coop could experience. He is thinking about A or B.
When Adam got home, I walked him through all of the pieces that he missed in his decision-making process. I call this It’s a Brave New World, because this is the very first time that he has considered all of the ramifications of his decision. Then I feel like a total asshole, because I know that he cannot help what he is doing. He feels SO BAD about making decisions based on 5% of the available data. He just doesn’t think in a way that leads to, “Well what about THIS? And THAT? Also THIS OTHER THING, TOO.”
It is a struggle. Once I walk Adam through something, I know that he will likely never make that mistake again. Unless he has made up a rule that makes it okay in his head. This looks like, “Well in this particular instance she said to not ever give Coop formula unless it is life and death and without asking her BUT there is this new thing that has entered the equation and that makes it okay to feed him formula.” Can I tell you how crazy this making up of rules on the fly makes me? Very fucking crazy.
So we’re looking for a new therapist. The last one treated me like the mother in these situations-like I was Adam’s mother. I understand she is used to dealing with autistic children and their parents, but her solutions would kill our marriage. It is frustrating, all of it. But Adam didn’t ask to be autistic. I didn’t ask to be disabled. We work with what we have, and try to do better the next time.
I’m glad A. spoke out before I did… You only have to watch one horse die of tetanus to become a devoted advocate about the vital importance of annual vaccination…
Best wishes from your cyber-friend, Val J “Vaccinations are My Life”, DVM
Once the deed is done, it’s done !!! What are you going to do , sit and fume? Why expend all the energy being angry and pissy. That’s why we “Chill!” There is a deeper layer of understanding here of people and situations. I work with aspies kids here and know what it take to teach them things that are far more difficult than normal children.
A great lesson in powerlessness… as in people, places and things.
Adam made a monumental mistake in his partners eyes, after all the work she did. Granted, I hope she didn’t put him in the doghouse for too long. That is never good.
So Yes, we should all chill and take things as they come and try to find resolution and to make better decisions further along.
Jeremy
Adam was only in the doghouse until he realized what his actions meant to me (which was that same day). I’m not a grudge holder, I prefer to get everything out and move on with things. Blogging is sometimes how I get everything out. Which means I’m pissed, I write about it, I feel better, the end. So you see my fury, but by the time your read it I already feel better. Writing is my outlet as well as a place to tell stupid stories about what was rattling around in my head that day.
First of all, I hope Coop’s digestive system wasn’t too upset in the long (like more thab that first night) run. Secondly, I hope Adam isn’t feeling too bad about it. I admit that all I know about Asperger’s I’ve learned from the Bravermans on “Parenthood” and I had only a vague idea of how complicated being married to an Aspie is for both persons involved.
I wish you good luck for your search for a new therapist and keep my fingers crossed that the new therapist will be able to give both of you some tools and strategies to deal with your everyday decisions.
Watching those with Asperger’s on tv is so weird for me. They don’t “look” like my husband. But he gets them. He feels like them, he understands where they are in their heads.
Coop pooped two days later, it was yucky and that was about it. He’s back to being grumpy but also funny. Lately more of the latter, which is nice.
I know Jeremy is a good friend of yours, but when I saw his comment, I thought Oi.
I’m regularly chastised for decisions that, as a mother, I’ve put a LOT of thought into making for my child but folks who think I need to just chill. For me it was very important that my daughter not get any screen time till she was two and then on my terms. So when I found out a friend (the ONLY friend I trusted to babysit for my immune-compromised FTT baby with feeding problems and serious congenital heart defects) had been putting her in front of the television for Sesame Street at 1 year old, YEAH I was pissed. I don’t give a shit if its Sesame Street, so its educational. When you make a decision for your child that a ton of thought, research, and care has gone into, its really f’ing shitty when that decision is cast aside b/c somebody needed to take a shower and couldn’t abide bringing the baby into the bathroom for 10 minutes.
It might not be the end of the world that Coop got formula, but goddamn it, it’s the end of getting one thing you wanted for your child that seemed within your control when so many other things are out of your control.
So yeah, I can sympathize with your frustration that the adult closest to you in the entire world didn’t employ the logic that would have honored your wishes. Does it mean you’re going to murder him? No. But I can certainly appreciate that you’d be looking for more of a long-term solution that puts some of the onus for such decision-making on your husband rather than an “I’m sorry” and a lesson learned for you.
I know that the baby having formula is not the end of the world as a few have pointed out and it’s not going to kill him or mess up your supply, etc., etc., etc. But…until someone has had bleeding fiery nipples for two weeks, engorged painful breasts, got up every two hours through the night for 3 months straight, planned your whole life around a feeding schedule, neglected your other kids for half the day, obsessed over whether he was getting enough, gaining enough, watched every single thing that went into your mouth, refused to take an aspirin for a headache “just in case” and so on and so on…there is no way they could understand how upsetting it was for Coop to get formula. I know it wasn’t Adam’s intention and he couldn’t help it but that doesn’t mean you didn’t have the right to be upset. I hope you are able to find a therapist to help you both.
It occurred to me this morning that you may have difficulty finding the right therapist – not only because of Adam, but also because of you. You seem to have a take-charge way about you, and if you already have the leadership dynamic in your relationship, I doubt that a therapist would try to upset that apple cart. That might be why you got stuck in the “mother” role.
I’m a pretty capable adult, who has no problems making decisions. My husband is a bossy pain in the ass who wants everything his own way. Unless I make the exact decision he would, under the exact specifications he would use (um, hello impossible!), he gets all irritable. It’s not even that I make bad decisions – but he’s a control freak (moreso than I am). So this is where my perspective is coming from. You and Adam have a working relationship, and changing the way Adam makes decisions would probably mess with the dynamics of how that works. That might be why the therapist’s solution was unsatisfying…
Feel free to point and laugh if I am completely wrong about this.
I recognize that you are most likely right about your husband – you know him best. I don’t know that this is strictly Asperger’s though. There are many neurotypical people out there who would make the same decision due to laziness, unspoken disagreement with your worldview, or some other random event. But, anyway, finding the right counselor is a good idea.
Please read Denialism by Michael Spector. It’s a really good book, and it will tell you why I worry about little unvaxed Coop wandering about in CA, where herd immunity is not all it should be.
Sam … I GET it.
It is NOT a man thing … it IS an Asperger thing … and as I struggle with this linear, rigidity of thought in my teenager, I cannot imagine how much harder it is to have those traits in a spouse. And someone who doesn’t live with it cannot possibly understand that it isn’t just a matter of THIS incident – it is a matter of EVERY DAY.
If I had even a penny for every time someone tried to nicely say … he is just a boy, or a teenager, or a kid, or spoiled … well, I could fly out and take you to lunch!
(please don’t anyone read into this that I don’t love my child with every fiber of my being – or that I think Sam doesn’t love and appreciate her husband)
Best of luck in finding a therapist that is a good fit for your family. Your children are adorable, and I always enjoy reading your blog – I love your candor.
Just wanted to say … I HEAR you … and I KNOW (some of) where you are coming from!
Karen
All this drama !!! OY !!!
Was it really a nuclear explosion that Adam fed coop formula? Is it the end of the world? Did coop survive the experience? Is there any long lasting problem from formula after the fact? Maybe you need to chill …
He missed a step. Granted. He took the next right thing in his mind. Lesson learned??? note for next excursion, Make sure you pack boob juice before departure. List on fridge.
Back to regularly scheduled programming …
J.
Ahh… I didn’t get all this info on twitter, EXTRA problematic then…I thought it was a flare causing most of the problem thus my “pain window” tweets I can’t imagine how much rougher the fibromyalgia makes your life dealing with little kids…Tough roads to go there. You’re doing well understanding the source of the conflict anyway. Good luck…