Selfish

I have a confession. Lately, I've been feeling very selfish. Or maybe self-centered? All I know is that my #1 priority is my kids, and with a lot going on these days, I haven't been the best friend. Wife. Anything other than mother (and even that...)

More medical issues have come up with B, and in plain English, it sucks. Hard. In two weeks he will have an endoscopy to figure out if he has Celiac Disease. I won't go into detail about how we arrived here, because B deserves some level of privacy, but I can say he has markers in his blood showing he has a pretty high risk of developing Celiac at some point. That, along with other symptoms, have led his GI to tell me that even if the biopsy doesn't show Celiac, she will probably still want him to go gluten free.

Sigh.

B is already small. He barely eats, and what he does eat of course contains gluten. He doesn't have a big appetite, and so I fear taking away foods will leave us with other problems. Like starvation. I know I am over-reacting in a big way, because he probably won't starve to death, but when I say my kid is fine not eating, I mean it. I pretty much have to force feed him as it is, and that's with foods I know he likes. I've tried GF foods, and I can say with 100% certainty, if B has to go GF, we are screwed.

A lot of his issues with food are sensory based. His rigidness also makes it so that only certain brands and colors of food are acceptable. He eats no vegetables, and fruit is hit or miss, though thank goodness for year round watermelon. I don't even give a care if it's GMO. Anything to get him to eat.

I feel like we just went through a big change with the Epilepsy diagnosis, and we all just need a break. Smooth sailing for a while. But, I guess that isn't in the cards.

On the K front, things are going pretty well, but we are currently doing a med cleanse, and things could change. Basically, nothing is working for her anxiety anymore, and the meds are making her incredibly tired, along with making her gain a ton of weight. Just too much build up, I guess. So we are weaning her off, and getting a baseline. Her doctor is hopeful once we do this, her system will rev up a bit. She won't be exhausted all the time, and her weight will come under control.

K hasn't been off meds since kindergarten. Her anxiety is so bad, the side effects were "worth" it. Until now. I hope the transition goes smoothly, and I am hopeful her better school placement will help, but we don't really know what it will be like with K totally med free. All of this is adding to my own anxiety, and my own inability to look past my own kids to anything else.

On top of that, I am always worried that our perfect placement for K will be pulled out from under us. This is just a constant in my mind, and lately I've been worrying about it more. K is at a school where she is accepted and loved, and where she feels accepted and loved. She isn't forced to change who she is, or made to feel that everything she does is wrong. The focus is on her strengths, and what an awesome kid she is, not what an awesome kid should could become if she just did this, this, or this. I am always concerned that one misstep on my part with our school district (whatever that might be) could equal her placement being in jeopardy. The stuff nightmares are made of, my friends.

So, yeah, there's a lot going on, which means I haven't been pulling my weight as part of  my "village". At least I worry I'm not. I know there are people who expect certain things from me, but right now I can't get out of my own head. I want to, but I also believe you have to take care of your own family first and foremost, and sometimes you need to take a step back and do just that.

I am hopeful that things will settle down...soon-ish? That I can feel more comfortable about school issues, figure out all of B's medical stuff, and find a new rhythm. Not feel like I need to circle the wagons, and be unapologetically selfish. Although I guess I'm not unapologetically selfish, as I feel bad I can't be there for people as much as I'd like.

It's probably just part of being a parent. Not even a special needs parent, just a parent in general. Sometimes you have to take a timeout and focus on your own family, and their needs. And hope people understand.

Choosing to Medicate. Also? Words Hurt.

For as long as I can remember, the biggest challenge B has faced is his impulse control. Or, lack thereof. He'll just walk by someone or something, and need to hit or touch. He still runs out of buildings without me, and across busy streets and parking lots. The other day we momentarily lost him at an amusement park because he decided he wanted to go on a specific ride, and just took off running into the crowd. I have a scorch mark on my counter from when he wanted to see if a bottle cleaning brush would melt over a candle flame (while I was in the bathroom for 2 minutes, and he was four.)

In our meetings with neurologists and developmental peds, there has always been talk about medication, but until now it was never something I wanted to pursue. He wasn't really being affected by his own issues (feeling badly about himself, or doing poorly in school), so we went the therapy route, instead. We talked about strategies, and implemented tons of sensory input, in case that was the root of the problem. We figured as he got older, he would naturally mature out of some behaviors. Also, because B is a small kid, having him take medication known for zapping people's appetites wasn't something we wanted to do. The child barely eats as it is. 

But, since his seizures began, things have gotten a lot worse. He's like a pinball. That's the best way I can describe the change in behavior. He is unable to regulate at all, and has started getting in trouble at school. A couple days ago we were at McDonald's, and B walked by a little kid and bopped a toy out of his hand. He didn't even seem to notice he did it, and immediately gave the toy back. That wasn't good enough for the child's mother, though, who laid into B, telling him he was a bully, and why would he be so mean to her son? 

B just stood there, like a deer in headlights. I could see the tears welling up in his eyes, and the red shade of embarrassment creeping over his face. It was all I could do not to start screaming back at this woman, but I knew it would get me nowhere (sometimes you can just tell when it's not worth it to even attempt a conversation), so we gathered our things and left. 

The look on B's face when this happened made me realize we need to try something else. I refuse to allow his self-esteem to take a blow, because the electrical activity in his brain is making him more impulsive. I refuse to allow his school experience to go downhill. I refuse to allow people to judge him as a bully, or bad kid. I never again want to see that look of sadness and shame on my child's face.

The fact is, we aren't new to medications. K has been on a few, trying to mitigate her constant anxiety, so it isn't like we are against them. We have always tried other things before turning to meds, but some things just can't be helped any other way. B has ADHD tendencies, anyway, and the onset of his seizures really made them worse. We were hoping once his seizure med built up in his system, some of the side effects of his seizures would ease up, but that hasn't happened. I've also learned recently that a lot of kids with Epilepsy display the same type of behaviors as B, and medication can really help. 

So today we are meeting with the developmental ped, and asking for a prescription. I once had a doctor tell me that you should never medicate your child unless their issues are affecting them. Not if they are affecting you as a parent. Not if they are affecting a teacher. Only if they are affecting the child, which up until this point they weren't. I have really lived by those words, and feel we've gotten to the point where B is being affected, and where he's starting to feel bad about himself. 

So here we are. 

Sure, there's a part of me that wishes we could find a different way to help B, but we've tried everything else. And if this truly is being made worse by the seizure activity in his brain, then all the OT in the world won't make a difference. B doesn't deserve to be screamed at, and called a bully. He doesn't deserve to get in trouble at school because he can't control his body. He doesn't deserve for his seizures to make things worse. He deserves to be seen as the awesome kid he is, and hopefully with a little help, that will happen. 

That's a great kid, right there.