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.

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.

Our worst fears are confirmed.

(You Want to Test My Kid for What? Devotional #7)

Job 3:25  What I feared has come upon me; what I dreaded has happened to me.

It wasn’t exactly surprising to us, since the specialists made it clear all along that they thought our son may have autism. But getting the actual label was quite shocking and numbing.

The specialists who tested him and who interviewed and talked with my husband and I could not have been nicer. But to be told that your precious little child has something so possibly debilitating, something with no cure, something that will not kill him, but will require him to live a normal life span under such difficult circumstances was very disheartening.

And, because of the litigious nature of our current culture, the professionals must always tell us the worst possible scenarios, and downplay the best. So we were handed page upon page describing his disability. We were told that there was only a 30 percent chance that he had a normal intelligence level. The possibility of him living independently as an adult seemed very unlikely.

It was a bit of a relief to know what the problem was, and being surrounded by a group of people who were obviously interested in helping us was comforting. But the deadening thud on our hearts could not be denied.

Thanks be to God that He does not leave us to suffer alone for long. As He eventually comforted and blessed Job, so we can trust that He will do the same for us.

Something is not Quite Right

(You Want to Test My Kid for What? Devotional #1)

Isaiah 61: 1-2 (1) “ …the Lord has anointed me … to comfort all who mourn.”

When my son was six-months old, I started to notice how he would play with just one thing for weeks at a time. As an infant he became obsessed with spinning ball cage attached to his exercise saucer. When he was a year old he would hoist himself up by the stereo system and play the music that he wanted to listen to, for hours on end – literally all day, except for when I pulled him away to eat and sleep. This lasted for two weeks. He then switched to a new obsession. One thing that remained constant was his desire to spin things. He would try to spin a sheet of paper, a square block, his sister’s dolls, anything.

He also seemed somewhat behind in his speaking skills. He had started to say words at 15 months, but stopped when his sister was born a month later. It is not unusual for children to regress when a new sibling arrives. However, when he was two, he started to speak a little, but by three years old he still said very little.

I was convinced that he was not normal when I took him to Musikgarten class. He spent the first few classes curled in the fetal position with his face buried in my lap. When he finally did try to participate in class, he had fun, but was not at all in the same world as all of the other kids. I cried the whole way home. What was life going to be like for him? What was I to do?

What are some of the things that your child does that seem odd to you?

I found the following list of behaviors from the Autism Society of America to be helpful when trying to decide whether or not I needed to look into help for my child:

  • Lack of or delay in spoken language
  • Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
  • Little or no eye contact
  • Lack of interest in peer relationships
  • Lack of spontaneous or make-believe play
  • Persistent fixation on parts of objects