Work for words

It seems to be working – lately we have been giving our son jobs to do if he can’t control his mouth. Last week there was one evening where that snowballed a bit, and he ended up with quite a few jobs. After getting a few jobs for saying mean things like, “you’re stupid,” when I told him he needed to stop playing computer so that we could go pick up my husband, (his dad!) from work, he got upset about how many jobs he had, and couldn’t seem to shut his mouth off, ending up with 10 jobs. Some of them were very light, though, like, “go feed your sister’s fish.”

But lately he has been able to keep the job count a bit lower. I am so proud of him. I understand how hard it is to control one’s tongue,  as I was constantly in trouble for that same thing as a child. I never dared call my mom a name, but I did get into verbal wars with my siblings, constantly. I still have a long way to go on total tongue control, which means that my poor son does not have a perfect example to follow.

Thank goodness for Jesus’ example. Jesus wasn’t always, “Minnesota Nice.” He said things that were hurtful, unpopular and got himself into trouble sometimes. But Jesus wasn’t always loud and brash, either. Sometimes he used no words at all, but let his actions do the talking.

My prayer for all of us today, and especially for those of us with Asperger’s Syndrome or Autism is that we would be able to control our tongue – to really think before we speak. I pray that we would remember to carry our gripes to God, first, so that He can help us sort through what really needs to be communicated, and what we should just let go of. Often things we find offensive are just us misunderstanding a situation, or being far too petty. I ask God’s love for us, so that we can let that love cover a multitude of sins in ourselves and others, forgiving as he has forgiven us.

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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.

What will happen to him after I die?

Isaiah 49:15  Though your mother may forget you, I will not.

Once I had allowed God to comfort me over the losses I felt, there were still fears about the future that lingered. I should add that, I still need to seek God’s comfort on a regular basis, but the deep devastation that I first felt is not usually there. It does still rear its ugly head at times. But knowing that God comforted me once, gives me the courage to let him comfort me again.

The biggest fear I had was, what will happen to him after my husband and I die. Even if we are able to leave him money or set up a plan that seems like it will create a safe, fulfilling environment for him, how do we know that things will go as planned.

I thought of the stories of nursing home abuse, or of people stealing money from the vulnerable relatives they are supposed to be helping. I remembered friends who were horribly abused by foster siblings or stepparents. I knew that I would never be capable of setting up something that could guarantee his safety.

Then God reminded me that He had created my son, and he had a plan for him. Like His plans for all of us, it might include some tough times. God agreed that yes, my son might experience horrible abuse after I am gone, but that God was bigger than that and would be able to bring my son safely out of that. God reminded me of how the beautiful things he has done in people’s lives who have endured such difficult situations. He reminded me how much I was growing, and how much more meaning my life had because of the tough situation of having a child with special needs.

I am thankful that there are now many excellent services for adults with special needs, such as specialized employment and group homes. I am also thankful that my daughter truly loves her brother, and will most likely be willing to help him out.

I hope and pray that my son does not have a tough time after I am gone, and I will do my best to set up help for him, but I find comfort in knowing that no matter what life brings, God will not leave him.

All of our hopes and dreams are gone

 (My child has Autism Specrum Disorder? Devotional #2)

Romans 8:28  God works all things together for the good of those that trust in Him.

I had to let go of the dream of getting to know all of the neighborhood moms while watching my son play ball with theirs. I had to let go of the dream of having a house filled with the friends that my son had invited over. Gone were the dreams of making new yummy treats that he would be excited to try, or checking out new restaurants as a family.

The dream of a wedding to attend, grandchildren, even just a house to visit him at faded. Gone was the certainty that someday my husband and I would have an empty nest to enjoy. The reality that my life may never change much from what it is right now, was very depressing, to say the least.

You don’t realize how many hopes and dreams you have for yourself and your children, until you are forced to let them go. You don’t realize how much of your own joy you have tied up in what you think your children will become.

The only dream I had left was the promise that God works all things out for the good of those who trust in him. He reminded me of all of the people who lived fulfilled, but very different lives, such as Mother Theresa, Amy Carmichael, and numerous other heroes of the faith. They may not have had the home in the suburbs, the 2 kids and the 7 grandkids, but they were more fulfilled than most. I just had to adjust my view from the America Dream, to God’s dream for us.

Though it was still hard to hear about how well everyone else’s son was doing in T-ball, while mine cried because he hated it so much, I actually began to feel a bit honored that God would entrust our family with the challenge of living counter-culturally in such an obvious way.

I pray that you would be able to get a glimpse of the good that God has for you in the midst of this very difficult situation. And if you can’t see any good right now, remember that God does not break His promises, so keep holding on. He will work things for good, because He promised He would.

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.