Alone

This month has been frustrating. My parents are moving five hours away, therefore I’m losing a lot of support. In addition, while I was planning to transition Buddy to more intensive therapy and homeschooling over the summer, I am getting so fed up with his school I’ve decided that it can’t wait.

Lately, potty training has been challenging for him, and the school’s solution is to put him in time out when he goes, something that EVERY book I’ve read on the subject says not to do. Monday they told me he was being defiant and going more often just to spite them. He had diarrhea and turned out to have had a stomach bug, he wasn’t trying to spite them, he was sick. Yeah, I kept him home today.

I feel like talking to them gets me no where, I feel like they don’t understand that he has autism and does not process things the way we do, and that they are reading the most negative interpretation of his actions that they can. And I feel that this is harmful to him.

A few weeks ago I started trying to get him in a new place. However, my emails, phone calls, and online applications went unanswered. I have tried every place in the metroplex, and as of Monday none have contacted me back.

Then Sunday night happened with the off roaders in the park. Sunday evening I emailed the parks department about the situation and then contacted every local hiking group, the local Sierra Club, every place I could think of that would be interested in the problem of off road vehicles tearing apart parks. The city didn’t get back to me and the only message I got from people was good luck. I said I was trying to find some support because it was a complex problem that would require a lot of people to speak out against it to get some action done, and someone told me, in what I’m sure she thought was inspiring, not to underestimate the power of a single voice.

How I took it? Screw it, I’m fucking alone in this.

These past few weeks I have been frantically trying to get help for my son while losing a major source of family support, on top of it, I feel like I’ve lost my sanctuary in losing the park right beside my house, so I took on the off road vehicle battle, hoping to find other people out there who were fed up with them, and nothing.

After hearing nothing from the city department last night I emailed the mayor and all of the city council members. I knew, being in Texas, they weren’t going to care about the environmental devastation, so I played up the fact that one of my children could have been run over and that the area I was in is often frequented by children and if those off roaders are allowed to continue there it will only be a matter of time before one is hit.

That got some action from the city today. They called to tell me some of the strategies they’re working on but didn’t sound too optimistic. I’m still just devastated by how little momentum there is in Texas to do anything about this. I thought surely there had to be an organization fighting the off road vehicle problem somewhere in a state as large as this, but there isn’t. And frankly, I suck at finding like minded people who care as much as I do. Only thing I can think of is to canvas the park and the frisbee golfers, whose area the off roaders are destroying, and find people affected by it and interested in doing something. I’m going to do it, but talking to strangers when I don’t know if I have anything in common with them is extremely anxiety producing for me.

The best part of today, though, that finally gives me some optimism was that one of the therapy places finally contacted me back, and they have a more intensive program for Buddy (I think he needs more hours of therapy than what he’s getting at the school). Of course, it will cost us, I’m still building a client base so money is tight, and I’m still miffed that I had to make a career change so I would have the flexibility to get him to therapy in the first place (this was why we held off so long, with two people working full time there was no way we could take him to and from a therapy program that was 9 to 3. The school only worked because they had bus transportation from his daycare).

The strange part of this was really having one of my first really trying times since becoming a counselor. I’m used to telling people to wade through the bad times, the things you are worrying about now you most likely will not be worried about three months from now. Yesterday I just kept telling myself those things over and over again to get through the day. Hoping today is a turning point in my luck, which seems to have been going downhill for awhile. Perhaps if I’m really lucky when I canvass the park I’ll find a lot of other people just as pissed at the off roaders as me.

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.