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.

First time ever

For the first time ever, I was able to leave my son unattended with a group of peers on the school playground, and not worry about him exploding. And I was able to leave both of my children with a group of peers and one adult who may or may not have been capable of keeping the peace at the church gymnasium after Sunday School. I was able to relax and talk with friends, and come back 10 minutes later to find all children still having fun, in both instances.

Honestly, just a month ago, I would have laughed if you told me that was possible. I would not allow my son out of my sight unless I was confident that there was another adult who was aware of his needs and could intervene appropriately, if he became stressed out with a peer.

I finally feel like a normal mother!

I don’t plan on leaving him unattended for more time anytime soon. But 10 minutes is amazing! I am so proud of him, and his peers who have embraced his needs and support him, while teaching him how to act more, “normal.”

Thank you for all of your prayers! They are working! I pray for all of you waiting for a breakthrough, that it would come, and that God would hug you while you wait. For those of you who have children with more significant disabilities, who know they will probably never see such a breakthrough, my heart goes out to you and I pray God’s promise, that He will never leave you, and that His grace is sufficient.

Also, I realize that this new state of being may be fleeting, and may not appear again for some time. Just like when I learn a new interpersonal skill, but then get lazy and backslide. I hope, for his sake, more than mine, that he keeps on building on this ability!

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.

Doing unto others

So, one of the classic signs of autism is the inability to innately understand that others have different opinions on things than they do. Once an autistic person learns of this reality, they still do not think that is ok. They honestly think that the other person is wrong, or is just trying to make their life uncomfortable. They really don’t understand how others can want to think about or do something other than what they like.

With that in mind, we come to the always exciting, but contentious question (though it should not be, but is because of autism in the house), where should we go out to eat?

When my son was preschool age, we always went to a place he liked. When he was a little older, we tried other restaurants that we knew would have something that he would hopefully eat. I say, hopefully, because any mother of a child with ASD, and many mothers of little kids, in general, know that all hamburgers and pizzas are  not created exactly alike. So to the child, they are not the same food. Therefore, liking McDonald’s hamburger, does not guarantee liking Perkin’s hamburger, and so on.

We still choose restaurants that we know have something he will at least try, and he has gotten quite good at eating any hamburger, and almost any pizza without fussing. I am very proud of him, as that is a big step. Unfortunately for him, because he is learning to accept tiny variations in food, we have been starting to go to restaurants that are favorites of other family members, but do not have the requisite pizza or hamburger.

For instance, my daughter loves KFC. My husband and I also enjoy it. We have been to KFC before, but we try to avoid it because it brings A LOT of complaining from our son. He loves Scwhan’s chicken fries. Those are his favorite food at home. However, KFC chicken fingers are nothing like the Schwan’s. I find both to be quite tasty.

There is a KFC near the children’s school, so a week ago we went there for dinner before the school art fair. We live 20 miles from the school, so to go home for supper would not have left time to eat. Sometimes I pack a supper to eat before school functions. But I had promised my daughter that we could go to KFC, since we had been to my son’s favorite restaurant numerous times already.

As those of you with ASD kids can well imagine, we had a rather miserable dinner at KFC. Oh, the food was great, the service was wonderful, even the booth was comfortable and the restaurant clean and inviting. But my son would not stop fussing. We did get him to eat all of his dinner (two chicken strips and corn on the cob, washed down with some pop), but the whining, complaining, mouthing off, was incessant.

In previous years my husband and I would have decided that going to KFC should not happen again. We would tell our daughter that maybe mom could bring some home for her while Mark had something else, but we would not go to KFC as a family. Well, my son has truly been growing in at least his knowledge that others don’t always like what he likes. And he is starting to feel a little less threatened by that fact, though he still doesn’t exactly embrace it. He probably never will feel totally comfortable with it. I know, as an Aspie, I still find that truth to be innately uncomfortable at times, even though my experience has taught me that it is no big deal, and can even make life more fun.

We told my son that until he can learn to go to someone else’s favorite restaurant without complaining, we are not going to take him to his favorite. Because of all of his fussing at KFC, he was banned from his favorite, Wendy’s, for a week. We would have never even dreamed of trying something like this a year ago, but since we have seen some little hints of developmental readiness, we thought we would give it a try.

Yesterday there was another function at school that required us to stay close for dinner. Again we went to KFC. My son made an initial complaint, but then settled in quite nicely. He wasn’t exactly enjoying the experience, taking some reminding to take a bite of chicken or corn in between tales of the Lego sets he wanted to save his allowance to buy. But overall, he did very well. I didn’t leave the restaurant vowing to never take him there again!

I really hadn’t thought that he would behave so nicely. I figured it would take quite a few visits to other restaurants before he would earn the privelege of going back to one that he likes. I guess he was developmentally ready to take on the challenge, and the promise of being able to go back to his favorite restaurant after he behaved at someone else’s was a big motivator.

So next Tuesday we are going to Wendy’s for supper before yet another school function. Welcome to the end of the school year!

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.