Talking about peeves

(Marriage tip #2)

I have learned that if I am upset with my neurotypical (NT) spouse about something, he prefers that first I start out with some pleasant small talk, followed by a comment about how much I enjoy him. After those pleasantries, I may bring up what is bothering me using an, “I feel this way when you behave that way,” statement. I then should quickly follow up with another pleasant statement. From reading parenting and relationship materials, and listening to married friends talk over the years, it sounds like this is the way most NTs prefer to be told bad news.

This, however, is not at all how those with Autism Spectrum Disorders like to learn about an issue. First of all, we don’t particularly like small talk at any time, though most of us have learned to put up with it, and try to participate for the sake of keeping up relationships.

Second, we want you to get right to the point. It confuses us when you start out with something you like about us, just to have you then launch into something you don’t like about us. It does not make us feel good to have you say something nice about us first. In fact, we feel tricked – here we thought we were having a pleasant conversation between contented friends when, BAM! Sucker punch to the mid-section. You are not at all contented but frustrated with us.

Now it will be hard for us to have a pleasant conversation with you in the future. We won’t be able to relax – we will keep wondering when you are going to drop the hammer on us, again.

It is ok to say a quick, “I love you, but…” But please, no long, drawn out pleasantries. Just give us the bad news, and let’s move on to how to solve it.

You can tell us what you like about us after we have discussed the bad news. We may find that comforting, but please don’t waste your breath on it before. That will just make us feel patronized, disrespected, lied to, etc.

Before I realized that I had Asperger’s Syndrome, I had gotten to the point where I was really nervous about talking to my husband, because I always seemed to upset him, when I was just trying to make our relationship better, and vice versa. Now I understand he is not trying to trick me, but trying to be considerate, from an NTs point of view.

I am trying to be less direct, more round-about, and more affirming like he prefers. I fear that I am really quite terrible at it. It is so uncomfortable, and feels so conniving. But with God’s help, I hope to improve. I think he tries to be more direct with me, but that is a very foreign way for him. The good news is that we are both now aware of our differences, so we are able to focus on the issue at hand, and not so much the delivery of the news.

Do unto others as you would have them do unto you, by doing unto them what you don’t want done unto you, but that they prefer.

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It feels like our son has died.

(My child has Autism Specrum Disorder? Devotional #1)

Psalm 23:4  Yeah, though I walk through the valley of the shadow of death, I will fear no evil, for your rod and your staff, they comfort me.   

The son we had grown to know and love seemed to disappear. He was no longer just the bright boy who refused to use his words, the boy who had amazing hearing and a memory that wouldn’t quit and who was just too sage to speak his mind.

He was no longer just the boy with the infectious laugh that everyone couldn’t help but giggle with, even when they had no idea what was funny. Gone was the guy who just loved to shoot baskets, throw rocks into the river and roll bocce balls for hours at a time.

Our son seemed dead. Instead, we were given a boy we hardly knew. One that could talk but wouldn’t, but not just because he was being sage or stubborn, but because it was actually difficult for him. A boy who didn’t throw rocks or roll bocce balls on end just because he enjoyed it, but because he had a disability that made it difficult for him to stop and change what he was doing.

Instead of seeing our son as quirky, but whole, I now saw how broken he was. Thank goodness for my husband, who is more of a rose-colored-glasses, glass-half-full sort. I think he was able to keep a better perspective on things than I. My heart was truly broken.

Though I had suspected this reality since he was six-months old, having to come face-to-face with the fact that I would never be the mother of a “normal” son, required a lot of letting go.

The only thing that got me through this difficult time was Psalm 23. As I walked through the house I could see the deep canyons walls on either side of me. The path I was on was dark, with no sign of the valley ending. Having the promise, that God would comfort me brought me through to the other side, and it will bring you through, too.

Change of Plans

(Marriage tip #1)

Here is one of the first issues I remember running into with my husband. My husband and I might casually discuss what we wanted to do on the upcoming weekend one week night during dinner. Upon conclusion of the discussion, I would consider the weekend plans set. Come Saturday, I understood that we would do A, then go to B, and so on.

However, my dear husband would wake up at an appropriately late time for a Saturday morning, then ask me, quite innocently, “So what would you like to do today?”

My response – total frustration that my careful communication during the previous discussion several days prior had come to naught. A deep sense of loneliness borne from the fact that my husband, with whom I had spent careful time discussing my desired plans, had not the slightest idea what I wanted. Great irritation at being asked to repeat myself. Fear of the unknown would instantly consume me. My snappy responses would include, “Why are you asking me that? What did I already tell you?”

He would honestly have no idea what I was talking about. Eventually he would remember that we had had a pleasant conversation several days before. “Oh, and I guess we did talk about some ideas for the weekend.” But, in his mind, nothing had been set, we had just been talking.

Those of you on the spectrum know exactly what is wrong with that last sentence. We HFAs never, “just talk.” Talking takes a lot of emotional effort. Talking requires us to let loose into the world what is going on deep inside of us. Talking is not something we do for fun, but out of necessity. I can have fun talking with people, but I don’t enjoy, “just shooting the breeze.” I like to talk about something meaningful.

So how have my husband and I learned to work with each other on this typical communication problem between an NT and HFA?

I have to remind myself that he is not trying to ignore my words. He just doesn’t see every piece of communication as black and white as I do. In his world you can discuss ideas, but not settle on one of them immediately. So though I still get panicky feeling when I feel like he is changing plans, I try not to react, but remind myself of how he thinks – that he likes the excitement of change, and that it will probably be just as fun as the original plans. The panicky feeling has decreased over the years.

He has learned that I truly feel unglued when too many things are up in the air. I am not trying to be difficult, I just truly cannot even imagine living in so much grayness. I feel like I am literally losing my mind (and I do mean, literally. I know that many people write, literally, when they mean, figuratively. I mean, literally.). So he tries to soften the blow by saying something like, “I know we talked about these things, but I was thinking that this would be fun/useful/etc.” If we had planned something specific for a date night, he will call ahead or e-mail me to let me know if he is in the mood for something different. This gives me time to get over the panic, so that I can think more rationally about his suggestion, and be ready to talk with him about it as a reasonable person rather than a crazed meany.

I have learned to be open to a change in plans sometimes, because it is important for him to have that flexibility. Without it he starts feeling too boxed in. He has learned to be open to scheduling things ahead of time and sticking to them, because he knows that I need that stability at times (ok, ideally, all of the time, but that wouldn’t be fair!).

The thing that keeps both of us sane is our faith in God. God is ever faithful and stable for me, and He is ever full of surprises for my husband. So when each other falls short, we don’t have to freak out.

New Discussion Series Coming

Hi everyone,

I have had the unfortunate opportunity to learn of the recent dissolution or near dissolution of several marriages between an NT (neurotypical person)and an HFA (person with high/functioning Autism, also known as, Asperger’s Syndrome). Since I am in such a marriage (that thankfully, has not dissolved), it has been put on my heart to write a series of blogs that cover some of the very real issues facing such a relationship. I look forward to your comments, as I definitely would like to learn a lot in this area myself!

I will continue to post the Monday blogs about dealing with having a child on the spectrum. This new marriage series will be posted on Wednesdays.

He doesn’t know it, yet, but I will be getting a lot of input from my husband, so that you NTs are correctly represented.

Funding for ASD/Military Family Camp

My parents have a lake home on Spirit Lake, directly across from the Whispering Pines camp property in Burnett County, Wisconsin. The camp property has come up for sale.
 
My husband and I are interested in keeping Whispering Pines a Christian camp that serves the spiritual needs of families in the area. We would like to start a religious non-profit, so we would not own the camp, the non-profit would.
 
Our dream is to have a place for whole families struggling with Post Traumatic Stress Disorder to have a place to recuperate both physically and spiritually. We would like to offer hippotherapy (horse therapy), physical, occupational, and recreational therapy. We would also like to offer educational and counseling services, and most importantly spiritual support for the whole family through chapel services, kids programs and chaplains. Then, of course, the beauty of the lake and the enjoyment of the outdoors would add to the healing process. Our focus would be on serving military families and other families who have a loved one with a long-term developmental or physical disability. But all families experience extreme stress at times, so we would like to provide a place for all families to heal, and grow closer to God and each other.
 
I realize that there are several other Bible camps in the area, but they all focus on children or offering spiritual retreats for families and individuals without the added physical and psychological care that the we would seek to provide. Also, I understand that there is a new retreat center in the area for families who have lost a child or are suffering under the stress of a terminally ill child. The families we hope to serve do not fit into these categories – the families we hope to serve have a member who is temporarily or permanently disabled, but who is not terminally ill.
 
I realize that there are already two other offers on the property – one to make it into a housing development, another to make it into a campground. However, those offers are contingent on zoning changes.
If we can go to the zoning commission meeting on Thursday, Dec. 17 with a viable plan to keep the property a camp, we may be able to persuade the zoning commission to not approve the zoning changes required for the other two offers.
 
I figured out that with 20% down on a $970,000 dollar loan (that is what the current housing development offer is), we would need about $210,000 for a down payment and closing costs, and about $4500 a month to pay for the mortgage, assuming a loan at 5.25 %. My husband and I are able to finance a chunk of this project. If you, or anyone you know would be interested in supporting such a project, let me know and at what amount. If we could have some sort of viable funding by Thursday, that may help to keep the zoning change from being approved.
 
Thank you for your thoughtful consideration. I will not make any comments that disclose financial or contact information public.
Heather Holbrook