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.

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.