Category: Parenting Advice

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.

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.

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.