autistic child + losing my mind

My heart goes out to whomever (or whoever, I can never remember which is the correct one to use when) it was that found my blog using those search terms.

I was to that point, myself, this past Monday and Tuesday. After a typical weekend of my son’s constant fussing over every little thing, picking a verbal fight with anyone in hearing range, I let out a sigh after dropping him and his sister off at school Monday morning, and started in praying for new hope, new forgiveness for him, new love for him, so that I would be happy to see him and support him when I picked him up from school later that day.

Usually just a few minutes of remembering God’s admonishments to love our enemies, do good to those that think they hate us (my paraphrase added – I think most parents know where I am coming from here), put others needs before our own, forgive as He has forgiven us, then, remembering that God promises to always give us the strength and support we need to accomplish those tasks gets me back on track. I usually feel energized, or at least a little hopeful and positive.

But this Monday, nothing helped. I was tired and frustrated. I knew that God had seen me through before, so I was able to be civil when I picked my son up, but there were no warm supportive feelings – just trying to do my job properly, hoping that the feelings would come back sometime.

Tuesday I wasn’t feeling any better. I had offered to help a friend out at a local Christian ministry that afternoon, so I showed up and was told that I would be calling people to set up appointments for them to talk to my friend about prayer ministry opportunities. Those of you who know me well are probably laughing right now. I really have a difficult time making phone calls, and calling people I don’t even know, to see if they want to sign up for something is definitely on the bottom of my list of things I feel comfortable with. But on the way to the ministry I had told God that I would be willing to do whatever He required of me, no matter how mundane or out of my comfort zone, so there I was.

Since I believed in the “product I was selling,” so to speak, it wasn’t so bad, and I actually enjoyed myself a bit. Though I must admit that I was thrilled that most of the calls landed me into voicemail, where I could simply leave a message. As my time was drawing to a close, I dialed the phone one last time and ended up contacting a live person. He told me that he was already praying for the ministry, so didn’t need to set up an appointment, but then asked if I wanted prayer for anything. Since my own prayers hadn’t been working like usual, I thought I best not pass up this opportunity.

I told this kind-sounding stranger that my kid was stressing me out. “He has Asperger’s Syndrome,” I explained, and I just wanted a little prayer.

“I know a lot about that,” responded the stranger, with warmth and hope in his voice. “I married into a family with two children with autism. Would you like to talk to my wife?”

I felt a little odd taking up some of my volunteer minutes to get help myself, but since I wasn’t going to have time to make many more calls, anyway, I decided that I would be crazy to pass up such valuable support. “Sure,” I responded.

I then spent the next 10 minutes learning about how this mom worked with her son, who is graduating from high school this spring. It was inspiring to hear the hope she had in her voice. It was also comforting (my husband shakes his head at this, because I guess guys are not comforted by learning that someone else has a tough situation just like you, but girls do find it so) to hear her exasperation, frustration, and to hear for real, again, that I am not alone in this crazy world of raising a son with Asperger’s.

She said that, “Love and Logic,” and “The Nurtured Heart” approach have worked the best for their family. I have heard about both, but plan to get better aquainted with them, and try to use them myself.

She recommended writing lists of their tasks so that there is less to argue about, and then sticking to the broken record of, “When your list is complete, then you can play on the computer.” She said that staying very consistent, but calm when consequences needed to be handed out, then praising for good behavior was helpful. Also, having a carrot to work for rather than a stick to avoid was most motivating, though the stick is unavoidable at times.

I still am so floored that He met me in such an unusual way. Had my friend asked, would you like to make phone calls for me, I probably would have said, “You know, that is really not my strength.” I am so glad that I allowed myself to heed God’s leading to do something that made me uncomfortable. Through my obedience, He was able to give me the exact encouragement I needed, in a place that I never anticipated finding it.

I pray that all of us who are “autistic child + losing my mind” would find the support we need in Him.

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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.