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.

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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.