Tag: special needs

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.

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.

Change of Plans

(Marriage tip #1)

Here is one of the first issues I remember running into with my husband. My husband and I might casually discuss what we wanted to do on the upcoming weekend one week night during dinner. Upon conclusion of the discussion, I would consider the weekend plans set. Come Saturday, I understood that we would do A, then go to B, and so on.

However, my dear husband would wake up at an appropriately late time for a Saturday morning, then ask me, quite innocently, “So what would you like to do today?”

My response – total frustration that my careful communication during the previous discussion several days prior had come to naught. A deep sense of loneliness borne from the fact that my husband, with whom I had spent careful time discussing my desired plans, had not the slightest idea what I wanted. Great irritation at being asked to repeat myself. Fear of the unknown would instantly consume me. My snappy responses would include, “Why are you asking me that? What did I already tell you?”

He would honestly have no idea what I was talking about. Eventually he would remember that we had had a pleasant conversation several days before. “Oh, and I guess we did talk about some ideas for the weekend.” But, in his mind, nothing had been set, we had just been talking.

Those of you on the spectrum know exactly what is wrong with that last sentence. We HFAs never, “just talk.” Talking takes a lot of emotional effort. Talking requires us to let loose into the world what is going on deep inside of us. Talking is not something we do for fun, but out of necessity. I can have fun talking with people, but I don’t enjoy, “just shooting the breeze.” I like to talk about something meaningful.

So how have my husband and I learned to work with each other on this typical communication problem between an NT and HFA?

I have to remind myself that he is not trying to ignore my words. He just doesn’t see every piece of communication as black and white as I do. In his world you can discuss ideas, but not settle on one of them immediately. So though I still get panicky feeling when I feel like he is changing plans, I try not to react, but remind myself of how he thinks – that he likes the excitement of change, and that it will probably be just as fun as the original plans. The panicky feeling has decreased over the years.

He has learned that I truly feel unglued when too many things are up in the air. I am not trying to be difficult, I just truly cannot even imagine living in so much grayness. I feel like I am literally losing my mind (and I do mean, literally. I know that many people write, literally, when they mean, figuratively. I mean, literally.). So he tries to soften the blow by saying something like, “I know we talked about these things, but I was thinking that this would be fun/useful/etc.” If we had planned something specific for a date night, he will call ahead or e-mail me to let me know if he is in the mood for something different. This gives me time to get over the panic, so that I can think more rationally about his suggestion, and be ready to talk with him about it as a reasonable person rather than a crazed meany.

I have learned to be open to a change in plans sometimes, because it is important for him to have that flexibility. Without it he starts feeling too boxed in. He has learned to be open to scheduling things ahead of time and sticking to them, because he knows that I need that stability at times (ok, ideally, all of the time, but that wouldn’t be fair!).

The thing that keeps both of us sane is our faith in God. God is ever faithful and stable for me, and He is ever full of surprises for my husband. So when each other falls short, we don’t have to freak out.

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.