Tag: family support

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.

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.

Small Talk

(Marriage tip #3)

I wonder if this area of marriage is easier for a married woman with Asperger’s Syndrome/High-functioning Autism than it is for a married man. The reason I write this is because people with AS/HFA generally do not like to make small talk.

My husband wishes I was a little better at small talk, but being a guy, he doesn’t mind that I am quieter unless I have something I really want to talk about. However, I wonder if men with AS/HFA stress their spouses out a bit more on this point.

Here’s the reason we AS/HFAs don’t like small talk, we don’t gain the same things from small talk that neurotypical people (NTs) do. I have been told that NTs use small talk to gauge how their audience is feeling, to see if their audience is open to talking about something deeper.

Those of us with AS/HFA are not able to read the subtle cues that NTs read during small talk, so small talk is just a pointless, time and energy wasting exercise to us. My husband has decided at times that I must not be in the mood to talk about something important because I seem exasperated, or tired while he tries to engage in small talk. The truth is that I would love to talk about something important. I am feeling exasperated during the small talk because I do not understand the point of it. Anyone gets exasperated if they don’t understand the point of what someone else is trying to communicate to them.

I have also been told that NTs use small talk to warm themselves up. Because verbal communication is generally a bit difficult for us with AS/HFA, we generally only do what we absolutely need to do. Can you see why that would mean that we don’t like to warm up first, but just jump right in?

Finally, we find it very confusing to switch from small talk to something more serious. In our black and white world, either we are hanging out and chatting about nothing (small talk), or we are trying to solve the world’s problems. If we are in the mood for one, we are not planning on being in the mood for the other, so are surprised when the subject moves from light to serious.

So NTs, don’t assume that your partner doesn’t care about what you have to say when they don’t warm up to your small talk. Just jump in and start talking about something important to your relationship, and see if that doesn’t get them interacting a bit more.

I am slowly learning how important it is for my husband to warm up with small talk. It is not comfortable for me, but I just have to remind myself that if I want to have a good relationship with him, I need to do what he needs, not just what I need.

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.