Saturday, March 15, 2014

Today's thoughts

Yesterday was rough. Well, this last week was rough. I have had zero patience, and I don't know why. I am frazzled and not the mom I want to be. Not even close.

I have an appointment with Tami on Monday to try to figure out what is going on.

Our appointment went well a few Mondays ago. We added some more supplements, and upped the dosages of some of the things he's already on. And he's been a handful the last week. His sleep has also been restless, which we get to experience first-hand because he comes in to sleep with us every single night. I don't mind it usually, but when he's restless no one gets to sleep well.

I am pretty much taking today off. Everyone else can handle everything. I am going to go out for a run (which will be slow and I will suck), but at least it's above freezing. Well, not yet, but it should be. I need to clear my head and get some anger out.

I need to fill out all of Preston's paperwork for the MRI and EEG. That's coming up pretty soon, as is starting the Goleic.

We are still doing the clears and all of that. Maybe part of my issue is the clears - both Preston and I are reaching really difficult time periods in our timelines. He is getting close to clearing birth trauma and things during my pregnancy. I am clearing stuff from a while back when I was suicidal. So, it seems plausible.

Well, it's warm (compared to the Arctic) outside, and I gotta run.

Not in a good place today

I can't think of any area in my life where autism hasn't robbed us of something.

Like to go out and eat? Not if you're on The GFCFSF organic diet. 

Like to delight in and watch your child meet milestones? Ha ha, not with autism. You get to watch everyone else's child meet milestones, while you get to watch your own become more and delayed. More and more behind. And it crushes your soul. 

Vacations? Why the fuck would you subject yourself to something like that? That also includes even day trips. When you have a child that is prone to all out running and doesn't listen to directions and has no sense of danger, even the shortest trip is fraught with misery. Grocery shopping? No.fucking.way. Unless you want to abandon your cart in the middle of the store while you try to hang onto a screaming, thrashing demon-possessed child who has the strength of 10 men, it ain't happening. And at the end of it, you still don't have your groceries. 

You want more kids? If only it were as easy as that. Another child might also have autism. That's more sadness than most people can bear. I love children. I love babies especially. But, it's a hard decision and a definite risk. And it hurts so fucking much to watch other people easily contemplate having more, while they go on vacations and homeschool and raise "normal" kids. And go out to eat. And grocery shop. Or, you decide to have more. But, you can't get pregnant around December - because you have a doctor's appointment that you been waiting 14 months for. So, you need to put that off some more. And more. You know how they say there is never the perfect time? Yeah, fuck them. 

Take pride in your house? No a chance. Just today a chandelier got ripped out of the ceiling because someone swung from it, after climbing on the dining room table. While I was being irresponsible and eating dinner. I am such an ass - I just wanted one meal today while sitting down. 

Money? Forget that. Supplements, doctor appointments, co-pays, therapies, gas to drive to all these appointments, that takes care of any spare money and guarantees you will be charging your credit cards up as well. Spare money? Fuck NO.

Spare time? There is isn't much of that either. And if you do find some, you feel guilty because you're not researching the latest therapy and dedicating 100% of yourself to it all. 

Monday, March 3, 2014

I will never tire

This title means a lot of things to me.

What I had in mind at first, is that I will never tire of hearing my sweet baby, Gabriella talk. Today, as she held out her sippy cup she told me, "I need milk in it."

My heart melts every time she speaks. The adorable way she crinkles her nose and says, "Nooo!" (and the slightly demonic voice that accompanies it). When she says, "Go away, Buzzy". When I try to pick her nose and she tells me, "Those my bogies!". I will never get tired of hearing her speak, watching her develop, and watching her grow - as she should. As all children should.

But some kids don't get that chance. How sweet it feels with Gabriella, it is sometimes equally as bitter to watch Preston struggle.

Our neurologist appointment went well. He *listened* to us. He didn't criticize what we were doing. He told us we were doing a good job (which felt good). There was also a medical student in there as well. It was good for him to see real patients who were trying "alternative" treatments and having success in treating autism. All in all, it was a wonderful appointment. Our plan is in a few weeks we are going to get a sedated MRI done up north, followed by a 23 hour EEG. Which includes sleep. Which this doctor said was VERY IMPORTANT.

Did you hear that Dr. Rothman? And the crappy doctors/nurses at OSF Peoria? Autism IS reason enough to warrant this. And, puberty is another time we have to watch out for, because kids that weren't having seizures before, might start getting them at that point. Thank God for GOOD doctors. And Dr. Michael Smith at Rush in Chicago is one of them.

Which brings me to the other meaning of this post's title.

I will never tire of trying to find ways to improve Preston's life. To help him be the best he can be. To help his with his medical issues. Not to "change" him. Not to "fix" him, but to help him be happy and healthy. And there are some days when I am tired and I need a mental break. And I do that. And then when I am ready, I jump right back in the ring and start swinging. For all of the hard work Preston does every day at school and his therapies, I owe him that much.