Tag: label

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.

My family thinks we should get him labeled.

(You Want to Test My Kid for What? Devotional #5)

Proverbs 15:22  Plans fail for lack of counsel, but with many advisers they succeed.

By the time our son had reached his third birthday, and still did not say much more than, “mama,” “daddy,” and “no,” our extended families were getting very concerned. It is true that there are some children that don’t start speaking until they are four, but that is very unique. We used the argument that Albert Einstein didn’t speak until he was four, because, as he said, he hadn’t seen a need to speak until then. Later I learned that it is widely believed that Albert Einstein was probably on the Autism Spectrum. So much for that argument.

Our son was able to get his needs met by grunting and looking at what he wanted. It was challenging to understand him at times, since when looking at an object on a kitchen counter, it could be difficult to tell which object of the 10 or so was he looking at? There were days when I was near tears or just barely able to keep from screaming in frustration during these guessing games.

Our son liked a predictable schedule and predictable food. This had been simple to maintain when it had just been the two of us at home all day, and when his sister had been a baby. But now that she was nearing her second birthday, she had ideas and opinions of her own. She liked surprises, both in schedule and food. His consistently intense reactions to disruptions in his life were getting more and more difficult for me and others to handle.

My mother wisely noted that it would be better for people to learn that he has a disability than to simply think that he is a brat. I kept hoping that he was just being the typical three-year-old and would grow out of his tantrums.

The earlier you get help for your child, the easier it will be for them to learn new ways of behaving. So if you have a supportive group of friends or family who are concerned about your child, seriously think and pray about if you should get your child help.

We do NOT want him labeled!

(You Want to Test My Kid for What? Devotional #4)

Proverbs 22:1  A good name is more desirable than great riches.

My husband and I were caught in a catch 22. We were pretty sure that our son was not, “normal.” But our state won’t let anyone in their employ help our son without giving him a label, first. It makes sense that the state can’t okay the disbursement of funds unless there is documented need for those funds. But we were afraid that getting that label would fundamentally change how the world treated our son.

I suppose we could have had him tested and labeled by the school district without telling anyone we knew about it. But the label would follow him throughout his school career. Eventually word would get out. We could have chosen to have him tested by a private agency, but again, if he needed help once he became school-age, the label would have to be shared with the school district. We knew that realistically, there would be no way to keep such a label from affecting him.

We were afraid that people would consider him to be stupid, that they would not give him a chance at life, that they would make fun of him or find ways to manipulate and use him. So we decided that at two years of age, a label was not what we wanted for him.

Was it selfish on our part to not move forward with testing? Were we just too scared to deal with the implications of a label? Possibly. Do I sit and wonder what our child would be like if we had decided to get help for him earlier? No. We made the best decisions we knew how to at the time, and I believe God will honor that.

What things do you worry about should your child receive the label of, “Autism?”

Thankfully people today are much more open to treating those with differences as an important part of society, compared to previous generations where people with differences were often hid away.