Buddy, Age 5

Buddy turned five a bit over a week ago. Lately we’ve seen some incredible progress which is encouraging, while the developmental delays and autistic traits can remain frustrating.

The good news is I did talk to his doctor about getting a referral for genetic testing. My doctor had read about the study I had referenced and got me in contact with a doctor who could do it. I’m hoping we’ll get some useful information, but if not we’ll be contributing to the body of knowledge about autism, and hopefully it’ll help some other family down the line.

As for the good news, we’re able to understand more of what Buddy is saying. It’s very concrete, nothing abstract. For instance I was walking into his room and he asked, “Where are you going?” I said, “To your room.” “What are you doing?” “Getting your clothes.” This is as much conversation as I can get out of him.

As always, he’s saying a lot that we can’t understand, but he’s also repeating himself. Used to be if we said, “didn’t catch that, what did you say?” he’d become discouraged and stop talking. Now he’ll repeat himself over and over again, which I see as progress.

The frustrating thing is that there’s no pattern to how he is mispronouncing his words. His speech sounds like it is slowed down, but one day he could pronounce his t’s like a d and another day pronounce them like an m. There’s nothing consistent about it, so it makes figuring out his speech a constant challenge.

His receptive language seems to be improving. He’s following directions better. He’s also started singing songs with me again.

The most exciting development has been with drawing. Yesterday he had a pad of paper and a marker and started saying “circle,” “nose.” I looked at what he was drawing and saw it was a face. I asked who it was and he said it was “Buddy face.” I never hear him refer to himself by name! Never! If people ask him his name he just repeats, “name.” He’s also never taken an interest in his reflection in the mirror, though he does like looking at pics and videos of himself. Still, drawing a self-portrait seemed groundbreaking. Then he drew “daddy face.”

I asked him if he wanted to put his picture on the fridge and he did! Considering he doesn’t show off his accomplishments much, that was also something.

The aggression with his sister has stopped, and sometimes he plays well with her, other times he tries to pretend she doesn’t exist. When they ride in the wagon together he sings a song called “Stomping feet” with her that is way too cute.

Now the frustrations. Really, it’s the typical winter frustrations. It being dark so often is very problematic. For one thing, he’ll go around the house turning off all of the lights. This gets very annoying, as it’s hard to do much in a pitch black house and makes mornings even more challenging because I’m fighting with him over the lights being off as I’m getting everyone ready to go.

He does not do this during the day, and I honestly think he believes that because it’s dark outside of the house, it has to be dark inside of the house, and having the lights on when it’s dark outside really upsets him. Looking forward to spring and LIGHT!

The other side of this is he thinks it’s bedtime when it’s dark, but 5:00PM is WAY too early for bedtime, and convincing him to stay up till 8 has been a challenge. Lately he’s been getting up at 5AM, which is also way too early.

The more I think about it, the more his sleep problems seem tied to when it’s gets dark and light. The good news in all of this is typically his behavior starts to disintegrate at this time of the year because we don’t get outside as much, but this year he’s been keeping himself under control.

The other frustration is the fact that he vehemently refuses to potty. He will change his own diapers, which is fine when it’s a wet diaper, but when it’s a poopy diaper he makes a huge mess. He’s getting to this awkward point where he’s embarrassed by it and does not want me or Andy to change him, but doing the natural consequences of having him clean himself up is still not enough to motivate him to use the potty. I am so flummoxed by this, especially since his school is really putting a lot of pressure on me with this, but I am stumped as to what to do. NOTHING I have read addresses a situation like ours. Buddy knows how to potty, he’s done it at daycare, but at school and home he will not do it. And if one more so-called specialist tells me about another worthless picture chart I’m going to scream.

I figure we have to be near the breaking point on the potty training thing with Buddy. This is starting to inconvenience him as much as it is inconveniencing us and sooner rather than later, hopefully, he’ll realize it’s in his best interest to use the potty. I am hoping this is one of those situations where it gets worse before it gets better. Because  it is immensely frustrating.

The good news with Sissy is that she is already showing interest in potty training and has told us when she’s about to make a poopy, though her timing is off. I have a hunch we’re going to get them both out of diapers at the same time.



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