Jakobs Journal

February 22, 2010…5 years


This is him saying “Jakob is smart”. :>>

It was 5 years ago this month we received the diagnosis. 5 years ago this month, we began a journey into a world that is still a mystery in so many ways. But in so many ways, we’ve also figured it out.

I know I haven’t written anywhere near as much as I’d like to. It had gotten to the point where there was so much I wanted to say and I wanted to go into so much depth about it that the task of sitting down and writing became overwhelming. It was always like…I have 20 minutes and there’s no way I can say all I want to say in 20 minutes so I better just wait. Well, that didn’t work so well so I’m just gonna do what little I can when I can and hope it translates.

Jakob is awesome. I am so proud of that little man. I have worked (not hard labor kind of work, fun work…well, fascinating work might be a better way to describe it) many hours on getting myself straight so I could open the door for him. He has decided over and over again to walk through that door and into our world. It’s so amazing to watch and to hear. Yeah, language rocks…well, most of the time.

Ever heard the phrase “be careful what you wish for?”

So…part of yeast die-off (he’s full of yeast and we’re treating it) and detoxing of viruses and heavy metals (working on that too) is perseverating. Perseverating for Jakob manifests itself in repeating the same phrases over and over and over again. This would be a hot button for me. (Another hot button is eating boogers but we can discuss that another time).

For instance, in the playroom he would say “upstairs, door open” 174 times, at least. After about the third time of me explaining that the door would open at 3:00, I was done with “upstairs, door open”. But I would open other doors, write a story about upstairs, sing a song about upstairs, draw pictures of upstairs, build stairs with blocks and have animals climb the stairs…I did a lot with upstairs and door open. There was nothing I could do to make it stop. (And I couldn’t just ignore it since we want to encourage him to continue speaking so I had to do something.)

Here’s the thing…he knew it was making me nuts. He got control. Control is something people with Autism crave because they feel they have none. So I was creating this whole upstairs door open situation by not being able to just be ok with him saying it over and over and over. My reaction, even though it was only on the inside, was perpetuating it. I had to figure out what was bothering me so much about this situation.

So, after asking myself a series of questions, here’s what I came up with…I can’t stand having to repeat myself. If I have to explain something more than once, I get all kinds of self-critical believing that I’m doing a horrible job getting my point across. I like to think of myself as a pretty good communicator and if somebody ain’t getting what I’m saying, I must not be communicating very well. So I get mad at myself. Also, I cannot stand the feeling that I’m being ignored or not heard (there is a difference). When I have a point to make and feel that I’m not getting the opportunity to make it or my point is being brushed off…well, I fume (internally…rarely do I lash out).

Pretty cool that I figured that out. And after figuring that out, it became really clear to me that neither one of those reasons to get all bent out shape applied to Jakob and “upstairs door open”. For him, it was a simple matter of control. I was able to be okay with all 174 times that he said it. And I have been really ok with it ever since. And the funny part is…since becoming really ok with it, he’s stopped doing it. He may say it a few times but it passes…quickly. And the few times he does say it, we have a ton of fun with it. Amazing.

Every time I find myself uncomfortable, judgmental or critical of anything Jakob does, I do my best to figure out why. And whenever I figure that out, he walks through that door again. It starts with me. Every time.