Once, when R was 9 months old, he picked up a crayon and drew a long, bold line across the paper sitting out on our kitchen table.  It has been more than 2 years since that day, and he has never used a crayon again.

Around 14 or 15 months of age we also thought he was saying one or two words.  But it faded, and by the time he was diagnosed at 18 months, we were no longer sure the words had been there at all.  To this day, I honestly don’t know.

At 22 months he began using two signs.  “More,” and “milk.”  A few months later he lost them.

He once hand-led me to something he needed, which was huge for him in the communication department.  I was incredibly excited.  But it never happened again.  Another time he pushed a packet into my hand, a clear request for me to open it.  This too never happened again.

We worked for months on learning how to dump something out of a container.  It may sound like an odd goal- but he would only try to reach into containers, and there are many types of containers that are too narrow to fit your hand in, so you dump or pour instead.  This is a standard developmental skill that babies develop between 6-12 months of age.  We worked on it for about 6 months, and then one day he seemed to be getting it.  It lasted about a week and then we never saw it again.

When he turned two he began imitating some of the nursery rhymes he loves to watch on his videos.  We heard “ee-i-ee-i-o” from Old MacDonald, and we heard snippets of the ABC song.  He was completely nonverbal, so these were almost like first words for him.  But a few weeks later they disappeared.

This has happened with so many things.

I don’t know why he can do something once, or a handful of times, or even for weeks or months, but then lose it.  Our therapists have offered a few suggestions.  It could be a motor planning difficulty, one therapist suggested.  He may know what he wants to do in his brain, but not be able to make his body cooperate.  Another therapist opined that he had not put down the developmental foundations necessary for these skills, therefore he cannot consistently recall them.  In other words, if you try to run before you can walk you will fall down a lot.

Whatever the cause, it can be hard to watch.  Now, when he does something new, I am afraid to get too excited.  Sometimes it seems that whenever I share a success with a friend or family member he loses it shortly thereafter.  I feel like I will jinx it, so I keep it to myself, like an early pregnancy, waiting for that moment when enough time has passed that it feels safe to share.  That it feels like he will keep it.


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