Autism Watch: 2007

Posts Tagged ‘risperdal

Sometimes, even for those of us with the best of intentions, life just gets away from us. We look at our “To Do” list and pat ourselves on the back that we got everything done. We feel relieved we got through something, some other fun but stressful event is over with, and start planning the next. (And obviously, a blog update hasn’t been on my list for a couple of weeks.) But then it hits you — while you’re stuck in the minutiae, life is passing you by. The little things…the fun unplanned moments…the smiles, the laughs, the roses you need to stop and smell, they’re all either going unnoticed or they’re getting the cursory, obligatory glance while you head onto the next item on your list. Before you know it, weeks are gone by, and you have a long account of things you’ve achieved, but what about life?

I dread moments of deep thought and realization like this. I’m not a ‘deep’ person. I don’t like drama, no matter how easily it seems to find a family with numerous kids, especially those with special needs. I am not one to pontificate on life and philosophize on what something really means. I believe in God, and that’s where I put my ‘deep’ faith. Beyond that, I can appreciate a good poem or symbolic piece of art, but I myself don’t create them, so when reality hits me in the face, I need to recognize it and give it the acknowledgement its due, slowing down on my list writing at least for a while.

Over the last couple of weeks, we’ve seen improvements in ds. He has these moments of clarity that are getting more frequent, where he can calm his anger down somewhat on his own, even in small measures. We can talk to him, reason with him, if you will, before he gets to the point of hurting himself or someone else. He will still get mad, sometimes extremely mad, but we can see glimpses of what we think he’d be like if unaffected by autism.

When researching on treatment with medication, one thing that kept standing out was the likelihood that we’d see other signs that were always there but masked by his anger. I wasn’t sure what to think of that in the beginning, because autism symptoms/signs have always been there, but as time goes on, I think I’m understanding now. Routines, anxiety, irrational fears, and his particular specific need for sameness, control, and advance knowledge of what’s going to happen definitely stand out more than they did. Cut the pancakes this direction, but no syrup until after they’re all cut — and keep that fork out of the way until the syrup’s poured, too. Don’t let the kids in the room whisper when he’s there, they could be talking about him! His particular type of conversation, and the need to control it, starting over when interrupted…in a word, wow. Yet, it’s a good thing. We know now what we need to work on, and it’s no longer hidden by so much mad that we can’t see where to start. We can focus more on the things that are causing him problems, particularly in school, and address them with less tantrums to interfere.

This week, he’s off school for spring break. The Easter bunny brought him candy, and he’s been eating it. A lot. We also had three other gatherings over the holiday weekend that have contributed to him having a lot of dietary infractions, and he’s literally bouncing off walls. We’re focusing now on getting that back under control, and we know when he’s in control, he’s happier. Yesterday, when he’d need redirection towards better behavior, he’d literally repeat back to us, dh in particular “the same things you always say to me when I have an attitude, so I already know what you’re going to say, so don’t say it again,” all the while making the “wah wah wah” signs with his hands. There was more than one moment where we needed to turn away or completely get out of the room so he wouldn’t see us smile. Sure, he’s being sarcastic and he’s making light of discipline, but he’s being sarcastic! He’s getting sarcasm! He’s showing us he hears us, even when he’s mad. How much can I really complain about that?

The Easter bunny also brought the kids Guitar Hero for the Wii, hence the name of this blog entry. Ds wasn’t as excited as we thought, possibly distracted by the Captain Underpants book he’s been coveting, or the two new Pokemon characters he’d found in his basket. (And the Pokemon shirt? Initial scream of excitement, then it was tossed aside….) Turns out the Guitar Hero intimidates him. He didn’t think he could do it. We persevered, he persevered, and he can now get further through a song before he’s boo’d off the stage. That’s a big deal for him, to continue to try through the frustration…though I think he’s fascinated by the whammy bar and plays only so he can use it. Either way, he’s my little guitar hero. A year ago, that guitar would have been thrown across the room, no matter how heavy. Now, he tries and tries, and when he can’t do it anymore, politely tells us “no, thanks, I want to go do something else.” Major strides, and small blessings. These are the things I need to slow down and enjoy instead of grabbing my pen and adding one more thing to the To Do list. 

I was surprised. There you have it. The premiere of “Eli Stone” almost two weeks ago surprised me. I didn’t expect it to be good. I didn’t expect it to turn out the way it did. I moreso didn’t expect to have yet another show on Season Pass for my DVR to record weekly. (Who has time?)

So, way to go, ABC, for not bowing down to the AAP, CDC and whomever else asked you to cancel the show. Thank you for realizing that viewers have their own brains, can think for themselves, and can tell fiction from non enough to not be influenced so easily. However, <insert sarcasm here> way to go, ABC, for directing people with questions about autism to the CDC. CDC?? (I should use big font there. BIG.) As in “what were you thinking?” Center for Disease Control? So autism is a disease? If yes, why hasn’t the CDC found the cure for this disease? Oh, that’s right. Head in the sand. What was I thinking?

Disorder. Syndrome. Fine. But disease? No. So the CDC isn’t the place to refer people for information on autism. So many better places to mention. So many.

Almost two weeks ago, as I shared here already, we started our son on Risperdal. We are 11 days into it (12?) and I wish I could say I’ve seen a difference. His highs are still high, his lows are abysmal, and he’s still got a mean left uppercut…and right jab. Ask his siblings. Ask me. And his mouth? Ask anyone, I’m sure the neighbors all hear it. This morning, he cycled into this horrible sobbing period of depression that it took a while to get him out of. I succeeded, but I’m just waiting for the other shoe to fall. Or to be thrown, more accurately. With a low comes a high, and vice versa. Highs sometimes mean manic running from one end of the house to another, non-stop talking, screaming, laughing hysterically, standing and listing all the reasons he loves me…but lows mean he wants to tell me the depth of his anger, how much he hates us, how he hates himself, and how stupid he is. There are days I just hug him, because I know he doesn’t want to be this way, and other times I want to but can’t because he’s so mad that I can’t get near him. Six months ago, I’d not have been able to understand how draining this type of cycling is. I figured I’d seen the worst of his autism, that he was only going to get better with more treatment. Now all I know is that I don’t know enough, and each day brings something different.

Another update: ds’s ankles are still wobbly, and if we can get him to wear them, we have an orthotics prescription. They won’t ‘fix’ his ankles, per se, but they may make his legs hurt less when he walks a lot. Now we just have to see if we can get him to wear them. I’m not even sure insurance will pick up the cost, and last I knew, they were pushing $300. $300 for something for him to throw at someone at school? I don’t know.

On a similar note, has anyone encountered questions from the school in regards to your child’s behavior that they feel are caused by meds? If yes, I’d love to hear from you. (Hasn’t happened to me yet, but I do have a reason for asking, I promise.)

Back to work. Not much time to be on the computer outside of work hours the last couple of weeks, ds’s meltdowns have been severe and exhausting. Right now, it’s one day at a time. We go someplace if he’s doing good, and we stay home if he’s not. We split up our errands when possible so one of us is home with him, rather than taking him with us. Everything takes such planning, and while we qualify for respite, finding an agency who has an LVN available for part-time hours has been impossible. Tack on my 13 yod, who has seizure disorder and just had another 10 days ago, and every day is something different. I used to laugh at the “God never gives us more than we can handle” phrase because I don’t believe it was intended to be interpreted as it often is. In reality, God doesn’t give us more than we can handle, because we find a way to handle whatever it is. (I mean, really, what’s the option?) He will just always be there with us, throughout all of that, and with God, we can handle all things. Those without faith, I don’t know, it’s what gets me through because I know there’s a reason for all this. I know there’s a reason that we have two kids with extraordinary needs. What it is, I may never know, but I’m hanging onto the “faith faith a faith-a”…and was glad to see that reflected in “Eli Stone,” even if it came via “Everyone want a Dr. Chen” character, who just had a way of breaking it down so right.

So, way to go ABC, I’ll be watching Eli again this week … though I hope that Eli’s future visions have singers other than George Michael. 😉 

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!

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