no change

These last few days have been really trying. I find myself constantly going back and forth between thoughts of My Kid Should Know Better, to My Kid Is Special... and I don't mean special in that exceptional and unordinary kind of way; I'm talking special needs, the kind of special that requires specific handling. It's a little hard to explain. Like when people say that autistic kids just need more discipline, or time outs should still work, or spanking is still appropriate for children who are autistic... well they never met my kids.

Sure, I give my 2-year-old a swat now and then if he's doing something dangerous, like climbing the furniture and threatening to fall out the window. Or if he's wrestling with the 1-yr-old in a way that makes me fear a broken neck would result from it... It's the same fights, the same reprimands, the same, scoldings... the same, the same, the same.

My 5-year-old is no better. Everyday it's the same issues. Scoldings or swats come, but they make no real, lasting difference. I wonder if anything will. But the scoldings don't even help with whatever is happening in the present. I just get these looks where I see not so much defiance, but a compulsion to do whatever it was, again.

Sometimes there is straight up defiance, like when my 2-year-old stares right at me and says the words, "Don't touch," and grabs like the knives or whatever out of the kitchen drawers.

(Oh, didn't I tell you? I had to put baby locks on all the kitchen drawers and cabinets (like so many other ordinary parents), only to have them destroyed from repeated thrashing in an effort to break through. Now that's determination, I tell you! Never let anyone say that my kids are undetermined...)

I don't know. I'm just so tired of the same things. Things that never change. How do I change it? Is this normal?...

Originally uploaded by skaneatelessuites

shut up already

So obviously the topic about special foods has come up in conversation with other mom's who's kids are on the spectrum. But for fuck's sake, is it really necessary to freak out when the playgroup wants to play with playdough??

Oh, but he'll put his fingers in his mouth and it has wheat in it.

Are you fucking joking?

This woman had the whole playcrew  nervous about giving the poor kids things like raisins because there might be traces of flour on them. I had to endure a whole hour of a gluten/casein convo. One dad was there on his Blackberry, texting away trying to pay no mind to the loud crazy ladies. Like, that's cool you're trying stuff out, but you totally lost me when the poor kid couldn't play with the 'dough.

I understand the sense of urgency that people have. I understand the need to do something that they feel helps. I mean, we as a society should be eating more healthful, whole, and raw everyday. But for some reason, I just get so sick of hearing the same fucking arguments about why their kid has autism. Maybe because they're listening to world renown experts like Jenny Mcarthy (sarcasm!). Hey, anyone try to log into PubMed and do their own research?? Of course not, so the myths and confusion get perpetuated.

And let's not forget about the government conspiracies. What the hell did the government do now?? Not that I trust the gvt, but I just get sick of hearing the broken record.

Go eat a carrot, for craps sake! Stay away from all the "special" food that's still processed. And as for all your little pills - not everything that comes in a pill form gets absorbed by the cells, you know; it's called Biochemistry. Not to be mean here, but learning science when trying to discover human physiological and biochemical responses can only help you. Merely regurgitating what someone said doesn't mean you understand how the "whole package" works, and are therefore qualified to expand that "knowledge" out into other areas.

PubMed Central (a bit simpler to search)

PubMed Home (specific locations)

serenity now...

positive

This blog is mostly for when I absolutely need to emotionally dump a lot of things regarding the autism as it affects the family. Having said that, I also am worried that people might get the wrong impression - that everything about having children with ASD is terrible, or that I don't love them. That's not the case. I very much love my kiddos. It's just hard sometimes to deal with their difficulties, because things neurotypicals take for granted will affect autistic kids so badly. Some autistic children are overwhelmed by just going grocery shopping - the lights, the noise, it all affects them harshly. And that's not even the half of it.

Yesterday was actually a really good day for the kids. I don't know why we didn't have as many troubles as we usually do - but I'll take it. I just wanted to write down something positive so that the next time I come here to vent, I can look at this and remind myself that life isn't always so challenging....

tired of yelling

One of the things that my older boy has a problem with is detecting when my husband and I are angry at him for something he's done. By the time we yell at him, he does know (kind of), but I don't think he understand what us being mad at him means. I can yell at him, scold him harsh, whatever, and two seconds later he's singing to himself, not a care in the world - it's like talking to a brick wall, only he doesn't understand, I think. We don't even really know what the deal is.

He's also very oppositional, but not violent. I've thought about the whole Oppositional/Defiant disorder (yes, there's an actual "disorder" that is often times paired with ADHD) but I'm not sure he qualifies, even if he displays a lot of the "symptoms". Besides, aren't kids usually like this? That's what I thought. But talking with friends I think it's safe to say that there are kids out there who do not behave that way. And he's not necessarily "violent" - at least not on purpose. But he does lash out and flail about like a toddler throwing a tantrum, so...

If we need to explain something to him, and it's not what he's expecting or he doesn't like the way the conversation is going, then he will insist on breaking in to express his disapproval. We don't let him get away with this so we tell him to "Stop Talking" every time he breaks in with a "But..." This cycle of "Stop Talking", "But", can go on for several repeats, one right after the other and usually resulting in either my husband or me losing it and yelling our brains out for him to just "Shut Up". Even then he doesn't stop. I DON'T FUCKING GET IT! Why does it have to come to me screaming in order for him to actually STOP doing whatever it is we're telling him to stop doing?

I was talking to my husband about this earlier. I said that whenever we scold our 1-year-old he responds with a sad pouty face that's struggling to hold back tears. If it's serious enough then he'll cry, cover his face, and even become embarrassed to look at us. Not my 6-year-old... he just doesn't get it. (I'm trying to remember if he ever did this and I want to say no, but I'm not totally sure.) We all just don't get it. And we don't know what to do about it. Like I said before, talking and explaining doesn't do anything. So I hope it just gets better with age. Unfortunately, it seems that his situation has only gotten worse with age.

the second post

I'm still on my emotional low from yesterday. Yesterday... effing frustrating. No, more than frustrating. It caused both my husband and I to feel like the worst people in the world, like the worst parents who ever walked the earth, like total failures. Everything we did was wrong. And every effect we were looking for was also wrong. I could have really appreciated a wise mom's insight yesterday. I'll talk more about what happened later...

I go through these phases where I get onto a bunch of autism/ADHD/child behavior/parenting forums to see what other parents are dealing with. I scour, search, read others' stories and dilemmas, read all the well intentioned advice... I overwhelm myself trying to search for the ones that relate to my own problems. I often read a story and think to my self I'll have to remember about that if it ever comes up. But here are all of us, parents or guardians, trying to find the answers to how to be a parent to a kid who needs special attention. It gets blinding at times that I don't even know if the things my kids do are normal for a "normal" kid. Both my oldests are ASD and they're even different from each other, so I never know what's typical, normal, to be expected. My youngest is barely a toddler and so far displays no ASD behavior; I'm relieved. He's been a blessing to us and is like our refuge, if that makes sense.

I can't even tell you all the feelings and thoughts that go through my head when things get "bad". I mean, this is my outlet so I will tell you, but I'm just glad that I'm not alone in my thinking because it's pretty shitty to even say out loud. But like I said, unless you know what life is like with kids on the spectrum, then you don't know anything. But there are times when I've often said to myself that having kids with my husband resulted in a genetic failure. Well, he's thought the same thing - like maybe we were a bad match, like maybe by being selfish and having kids we only made life hard for them (and us). Don't get me wrong, we have plenty of UPS and times where we are absolutely proud of our little ones, but this blog is my outlet, my emotional dumping grounds when it comes to life when you're raising kids who are ASD. It's the ugly side/truth about life with ASD. People don't get the hardships involved, don't understand. I can't tell you how many of my family members still don't understand what we go through and have to deal with, or rather what the kids go through and have to deal with. Again, I'll talk more about that later....

So what happened yesterday? We've been dealing with the usual things that elementary school age kids put parents through: strong will, "not listening", defiance, talking back. But our oldest  has this issue of NOT doing anything we tell him without us SCREAMING at him. We seriously have to repeat our instruction a bunch of times before we finally yell, at which point he kind of gets the point. He was diagnosed PDD-NOS, which is a mild autism. One of his issues (I believe) is definitely he inability to realize when we're angry. And yet he knows when I'm yelling at him that I'm angry. But I don't understand WHY the fuck I have to yell in order for him to finally take me seriously. He also has these anxiety problems with the toilet that are stressing our family out. Ah, there's a lot to cover and I don't have the energy to do it all this in this post.

... to be continued again...

the first post

well, I've started another blog. But this one is desperate. I have lots to vent about. It may seem cruel. It may seem like a pity party. Maybe I will meet other moms like me, or parents who can offer their insight. We'll see.

I'll just say it right now:
Autism sucks! I don't give a fuck who you are or what you think you know about autism, but unless you have a child with it, or have taken care of a child full-time who has it, then you don't know what the hell you're talking about when you refer to it.

Whew, that's out of the way.

Yes, I have a child who's autistic and another one who is also on the spectrum, though not diagnosed as "capital A", as I've heard it called. There are good days, there are bad days, there are days when I just want to run away and never come back. There are days when my wonderful husband wants to run away and never come back. But we're dealing with it. We're learning as we go, and failing over and over. We're pleasantly surprised on some days, and kicked in the ass by everything the next. It's a fucking roller coaster that we're just tired of...exhausted. How we're going to get through the next several years is a question I often ask myself, but I can't even imagine how I'm going to get through the next fucking week, let alone the long term future.

Oh yeah, I should probably warn you that I swear a lot when I'm upset and highly emotional. Since this blog/journal is about very emotional stuff, I expect it will be filled with expletives. Although I will try to tone it down because I know it can be very distracting and aggressive to some, I make no promises; I need this outlet.

...to be continued...