This is Spinal Tap

Nope, not the kick ass movie…but a real freaking spinal tap. Tomorrow my little boy will have a needle stuck in his spine. Something that we hoped to avoid but we’ve come to the point where we have to do it. I know that as far as medical procedures go there are many that are much worse. I know that he will be asleep and at one of the best pediatric hospitals in the country. I know that we have to try and figure out what is going on with him. But it doesn’t make it any easier.

His every day life has been so overwhelming lately that it just feels wrong to put him through this right now. Why this is getting inside my head so badly, I don’t know. If we knew what the hell was going on I feel these type of decisions would be easier. Give me an idea of what we are dealing with and testing, treatments, whatever else could be decided with a goal in mind. This lets try this test and see if it’s this or let’s try this medication and see if it helps, is just not easy to deal with. But at the same time he needs some peace and we need to know how best to help him get that. So we will let them do the spinal tap and pray for an answer. I just so want my boy to be able to turn it up to 11 again.

The bad days affect everyone.

To say that today was a bad day would be a freaking understatement. Confusion, meltdowns, some other confusing shit I can’t even explain and tears. This was all day long. I think he may be getting sick but honestly have no fucking clue. I’m sitting here now praying he will finally fall asleep. As physically and emotionally drained as I am I can’t imagine how he has to be feeling. But he’s laying on the couch tossing and turning as I type this.

I’m not going to get into the ins and outs of the day because really I’m not even sure how to explain it. But I did come to the conclusion that Piper needs school to start ASAP. The start of all of the craptastic of the day was when Riley got confused while trying to get something for me. He came back to me trying to figure which was the microwave and which was the stove. As I explained again where he needed to look, Piper asks me with tears in her eyes how he could not know which was which. I tried my best to put her mind at ease but I can’t answer that question. We simply don’t know why any of this keeps happening.

I noticed her doing her best to make him happy today. Playing everything how he wanted to play it. Trying to talk him down before he could get upset. Several times she said to me privately that she was worried about him. By the end of the day I finally admitted I am too. I worry that this is all too much for her. We can’t shield her from it all. Even what we are able to she figures out on her own. At times I wish she wasn’t such an old soul. I wish she didn’t worry. I wish she didn’t want to take care of him. But I can’t change who she is. I can’t make it all normal…whatever in the fuck that means.

These days wear everyone out. The worry affects everyone. But in the end that’s what family is I guess. The good with the bad. I will keep trying to help them both through this the best I can.

Date Night

We decided over the weekend to take the kids out on a “date”. Riley and I went to Steak n Shake and Piper and Larry went to her favorite Chinese place. In true diva fashion she even got her daddy to wear a tie. Something he’s never done on a date with me by the way. Piper was so excited all day she was close to exploding. Riley was pretty much just focused on which milk shake he was going to have.

We rocked out to Pink on the way there and he loudly declared to the entire place after being seated “Drinks on the roof!” We talked (well he talked) about cartoon characters and his latest YouTube obsessions. Then the food came and I swear I heard crickets. He won’t eat many foods, and lately hasn’t been eating much of the few he will eat. But the boy doesn’t mess around when it comes to food, there is no dinner conversation. Well I should say there is no talking to anyone else. If the meal isn’t super good he will script through out, but if he’s really enjoying his food he gets into a zone. It’s as if he becomes one with his food. I normally will try and engage him but decided to just let him do his thing.

So we ate in silence except for a few reminders from me to chew with his mouth closed. It was peaceful but sort of sad in a way. I kept finding myself looking over at a table of a dad and his four kids. They were all laughing and talking together and I can’t help myself but to want that. Sure when we are all together we talk. But I so want him to join in that conversation. As I was sitting there deep in thought I noticed that my kid who never makes eye contact and has trouble reading facial expressions was looking at me while happily munching away. Then he asked “Are you ok MeMaw?” I told him I was and he put his attention back on his shake. It made me realize again that while he doesn’t often have a lot to say he never misses what is going on.

Pure panic

A couple of years ago Nickelodeon would run shorts of the artist showing how to draw certain characters. Riley latched on to this and ended up watching them for hours on YouTube. He quickly had every word and motion memorized. Then he started drawing them. He would even say script the video while drawing. He did this for anyone who would listen and would have pages and pages of The Fairly Odd Parents characters. He eventually mastered them and will occasionally bust out paper and pencil and do a couple.

Tonight he decided to draw and when he started instantly got agitated. He simply couldn’t do it. I don’t mean he couldn’t remember how, I mean he couldn’t physically get it on the paper. He started telling me he needed his book on how to draw Nickelodeon characters. After searching the house we never did find it. I suggested the videos and he was finally calming down and then all hell broke loose. All of a sudden he had this look of pure panic and kept saying this doesn’t make sense, over and over again.

I finally was able to calm him down and finally had to tell him he couldn’t try again until tomorrow. Now this sounds like just a kind of weird thing I know. If you know someone with autism you may be thinking it’s just a meltdown over something not going right. I wish that was the case. But this is so much more. This is what I keep trying to explain to his doctors when I say he’s becoming lost with things he knows. If you simply just can’t remember something or it doesn’t work out right, you don’t have that look of terror and panic. This is something that he knows backwards, forwards, & sideways. I wish he could have been able to explain to me what didn’t make sense on the videos. Unfortunately he’s just not able to express himself like that.

So I sit here with knots in my stomach on if I should even bother calling the doctor about it or not. It sounds like a nothing thing, but imagine you all of a sudden couldn’t write your name. You know that you know how but it’s just not working. This is just one of so many things he’s been dealing with because of this mystery fucking shit.

So this is what other people have been talking about

Last night I messaged a old friend from high school that I’ve recently been chatting a lot with on Facebook. I just really needed to bitch about this and that and hopefully laugh. We talked for a while and I felt better after. After we got done chatting because you know she’s a normal person who actually sleeps at night, I started thinking about all of the blog posts/ Facebook updates I see about special needs parents feeling isolated. I never really felt that way until the past month or so. All of the issues that Riley (yes, I’ve given up on the nicknames because I spend more time correcting names than I do on the post) have been increasing this past month along with various other things we’ve pretty much been house bound lately. My kids are excited when I tell them we have to go to the grocery store kind of house bound.

It’s made me realize how easy it is to just dig yourself into your own world when nobody reaches out. You see it’s hard when you don’t really have much to talk about but stressful shit. I don’t want to dump it on other people but it’s pretty much my whole world right now. So I don’t call because what do I have to say besides the latest medical crap, how many freaking times I was made to watch Uncle Grandpa on YouTube or what stupid thing one of the dogs did. I get why people don’t call. Hell, I bore myself right now. But not talking about it with anyone who isn’t living it just makes it harder. It’s a never ending vicious cycle that can drive a person crazy.

It’s one I have to figure out how to end for my sanity I. Or I just need a couple of pitchers of margaritas. It is Friday ya know.

My Independance Day- Working vs Stay at Home

I recently was reading a article about the whole working mom vs stay at home mom debate and for some reason I just can’t get it out of my head. My last day working was two years ago on July 3rd. We laughed and called t my Independence Day. I can say I don’t really miss working, but I miss the adult interaction. I can only listen to how to make Olaf out of play doh so many times before my eye starts to twitch. For the first year it really was amazing. My kids were thriving, my house was clean, the kids and I were constantly on the go, and things were just peachy.

I used to laugh at the stay at home moms who complained of how hard it is. In my mind what was so damn hard about being with your kids. I always thought that working moms had it so much harder. As they’d be bitching to me this is what was going through my head. “I had to drag my kids out of the house at 5 am in the cold and you’re bitching about having to wait at the bus stop.” No, I never put anybody down but I was a mega bitch about it in my head. Even after I stopped working I kept the same mentality.

Then last summer Boo started having his episodes and everything changed. Boo is struggling because of whatever is going on. The house is often cluttered because I spend most of my free time researching medical stuff. We don’t go out running around that much because Boo struggles so much in a different environment and money is tighter because of medical bills. Things are more shitty now than peachy. I wouldn’t change it because they both need me now more than they did. But that doesn’t mean it’s easier by any means.

It really took me having to go through a year of fear to realize just being a parent is fucking hard. It sucks to work and feel like you’re not doing enough for your kid. It sucks to be home and feel isolated because you spend so much time with just your kid. None of us have a handbook and none of us have all the answers. Just being responsible for these little people that you know you can screw up so easily is enough to drive someone to drink. Ever notice all the Facebook posts about wine? Yeah, mainly from moms. Moms who are pressured to do everything and with a smile.

Medication Side Effects, Disability, and 4th of July… OH MY!

As the doctor’s are adding other doctor’s and new tests to try to determine just what the hell is going on with Boo, the decision was made to see if some of the issues could be due to his ADHD. Now when I say my kid has ADHD I mean he really has it. We’ve never felt the need to medicate him before now but decided to try it to see if it would hopefully answer a few questions. But as is most things with my boy … answers don’t come that easy. The poor kid ended up having some fairly scare the crap out of Me Maw & Me Da (that’s what he calls us by the way) side effects. Thankfully we all got through it but I can tell you I still feel a tad bit of panic every time I think about.

To add to the beauty of this week I had a talk with one of his doctor’s today about having him officially declared disabled. I know that it’s something we need to go ahead and do in order to help us to get him every resource there is. But it’s affecting me a lot more than it should. It’s like when he got his diagnosis, I knew he was autistic but getting it all on paper just kicked my ass. Hell, sometimes just looking at the ever-growing co-morbid issues makes me want to cry. I’ve always tried really hard to show him that he’s no different from anyone else. I have this irrational fear that yet another piece of paper later on will make him think he is. I know it’s messed up.. but I never claimed not to be.

And good ole 4th of July has me having to make a birthday cake for America that has now become a Yankee Doodle Sponge Bob cake. What can I say he loves cake and Bob… sigh