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.

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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.

New Discussion Series Coming

Hi everyone,

I have had the unfortunate opportunity to learn of the recent dissolution or near dissolution of several marriages between an NT (neurotypical person)and an HFA (person with high/functioning Autism, also known as, Asperger’s Syndrome). Since I am in such a marriage (that thankfully, has not dissolved), it has been put on my heart to write a series of blogs that cover some of the very real issues facing such a relationship. I look forward to your comments, as I definitely would like to learn a lot in this area myself!

I will continue to post the Monday blogs about dealing with having a child on the spectrum. This new marriage series will be posted on Wednesdays.

He doesn’t know it, yet, but I will be getting a lot of input from my husband, so that you NTs are correctly represented.

We need help!

(You Want to Test My Kid for What? Devotional #6)

Jeremiah 33:3  Call upon me and I will answer you and show you great and mighty things which you know not.

Our family was at a friend’s house for a Christmas party the year our son had turned three. Within a short time of our arrival, our son was surprised by a Christmas ornament that made noise when its button was pressed. He became terrified and burst into waves of unstoppable tears. Finally, my husband decided that we needed to go home. I, being a stay-at-home-mom, panicked at the thought of needing to give up some much needed time to fellowship with others. I couldn’t bear to leave. So my husband went home without me, and I received a ride home from friends a little later on.

I know that sounds selfish and cruel, to not be willing to leave a party when my son was so obviously upset. But after three years of needing to hide myself away from anything and anyone that might upset my child, I was truly on the edge of losing my mind. My husband said that I just needed to be more careful about where I brought him, be more aware of what might set him off.

But there was no place I could bring him that wouldn’t set him off. Even staying at home and following a set routine did not bring peace. When it was time to stop playing so that we could eat lunch, he would run across the room screaming and hit me, every day, no matter what consequences I came up with.

That evening after the Christmas party fiasco I let me husband know that I could take the status quo no longer. We needed to get help on how to help our son, and there was no way to get help, if we didn’t know what the truth of his situation was. He agreed that, as much as we did not want our beautiful boy labeled, we needed to find some answers.

The next day I called our school district’s early childhood education department to let them know that we were interested in continuing the testing that we had halted a year earlier. It was a terrifying step to take. Would the return outweigh the risks?

Thankfully we have found God to be faithful in leading us down the path of having our son, “labeled.” The support we have received because of his diagnosis has been amazing.