At 12 years old, Max’s cognitive ability is similar to that of a toddler. His verbal communication is even more limited. He has a handful of words that have taken years to develop and they are not consistently used. His vocabulary is far from the 50 words of a typical two-year-old. One of his words is “Mama” (both beautiful syllables) and I am so incredibly grateful for that. The other words usually involve just a first syllable. Ba could ball or badewanne depending on the situation. We try all the relevant ‘ba’ words in English and German.

“Wawa” is water.

“Na” is nein.

“Hiyo” is hello.

It is so incredibly challenging to navigate the gap in Max’s ability to understand us and our ability to understand him. And then I think about how it must feel for him. 

For Max, communication is a confusing game of charades where we may get it right, or where Max may quietly abandon the attempt to tell us or the entire exercise ends in frustration. That is how it goes with his family. The people who have an almost intuitive understanding of what he might be trying to express. Maximilian’s ability to communicate with the rest of the world is so much further away.

Our life with GRIA: Inner strength

Maximilian needs help with all aspects of daily life. He needs to be changed, bathed, dressed, and have his teeth brushed. He needs help to eat with cutlery. Someone needs to help him put on his coat and boots etc. Constant supervision is a must.

Max may have only a few words, but he has a mind of his own. He is not necessarily cooperative with all daily activities. Add in communication challenges and Max can get super frustrated. I would be incredibly frustrated too. Max might have a big meltdown or he will flat out refuse to do something. It is all the things you typically experience with a much younger child.

The difference is that Max is 12 years old and he is much bigger, stronger, faster, and louder than a toddler. This is fantastic from a development perspective, but tough to manage. Once Maximilian gets really upset, it is very difficult for him to calm down. We try to avoid these moments as much as possible. Routine is really, really, really important for him. We avoid places and situations that we know are going to be difficult. Things he can’t have must be kept out of sight. Making a game out of something sometimes helps.

On a particularly difficult morning, I was reminded by one of Maximilian’s wonderful teachers that he is “strong within himself.” This characteristic is a challenge, but also a gift. When he is very upset over something that is not a choice and I can’t explain it to him, his relentlessness is hard to manage. When it comes to all things he learned to do by trying over and over and over and over and over again, being strong within one’s self is everything.