Autism Watch: 2007

Posts Tagged ‘mood swing

Okay, so he doesn’t really say that to me in those words exactly, but I know he’s thinking it.

I’ve explained Crap Week in a prior post, probably a couple of times (crap is pervasive and insidious) and thankfully, I think it’s improved. In all things but ds. We’re considering a medication increase — not something I would just randomly share with people, but his behavior, with aggression, temper tantrums, self-injuries, lashing out at others, refusing to listen, being outright defiant, it’s just over the top. He’s only on a ‘baby’ dose but he’s put on 8 pounds since he started the meds and I guess it’s time. Behavioral therapy helps, but I can’t have him marking himself like he’s been doing.

Every time I turn around, he’s telling me what to do, correcting what I do, and telling me what I’m doing wrong. And yelling. Yelling a lot. He wakes up in the morning and starts. It happens as he’s going to bed. Did I mention he yells?

Autism is a nasty monster. My son is a sweet boy. Mix the two — a sweet boy with some monster behaviors, and we’re working on our ‘what next?’ list. It’s a 24/7 battle for him to listen and do what he should. It makes for long days. I guess there’s a good thing in this: I am exhausted and sleep better. Always a silver lining, right? ūüėČ

Do you ever want to do that with your child? Ever want to hide him away from all the problems and sit and watch movies and eat popcorn forever in your own quiet, safe home…on an island somewhere?

So that’s extreme…a little.

My son’s mood swings this week have been up and down. Up and down. Up. Down. It’s been a really long week, with ds snapping at us for the littlest of reasons, yelling at us for nothing, angry out of nowhere, mean words, throwing things, the list goes on. Then a little while later, he’ll smile. Sometimes apologize. And the most heartbreaking of it all? He truly seems unable to control it. He’ll sit on my lap and sob because he’s a ‘bad boy.’ Bear in mind, “bad” is not a word I’ve ever used to describe any of my children. Telling a child he or she is “bad” is bad parenting, in my opinion. Kids aren’t bad. Kids are kids. Kids make mistakes, get sick, or have health issues, like autism or mood swings. So for him to say he’s a bad boy breaks my heart.

Last night, after an evening of giving his respite nurse a hard time, we had to tell him that he wouldn’t see his nurse anymore. When we told him, in front of her, she wasn’t returning because she’d gotten a new job, he didn’t react other than to smile. Thankfully, the nurse laughed to herself. (“See? He’s happy.” Argh.) She understood him, and we’ll miss her. Ds didn’t appear to really feel one way or the other until her car was pulling away, and he couldn’t catch¬†it when he ran out the door. “I really liked her, Mommy.” Another argh. So glad you did, Son, but why didn’t you tell her that when you had the chance?

Afterwards, we tried to talk to him about it, and the other mean things he’d said to her (one example is calling her stupid). We tried to discuss all his anger, and he ran off and refused to listen. A few minutes later, he pulled me, not speaking,¬†to a note he’d written, on top of which he’d placed a ring and ‘jewels’ that were his. The note said that he loved me forever. I looked at his eyes, as eye-contact is rare, and he started to sob. That’s when the bad boy discussion came out. He mentioned how he can’t help it, he can’t control his mad, and how the mad just comes up. Then the sad comes. Should a child have to work this hard to be a kid? Should he have emotions so strong he labels them?

This morning, I dropped him off at school and watched him run off when he saw a boy he knew, a boy that plays with him — sometimes. I couldn’t help but laugh out loud, probably looking crazy to any onlooker (but I wasn’t wearing my mercury/autism t-shirt, so no one was looking) because he seemed so happy, so different from last night. I was so excited to see him spinning on his butt on the ground, ‘breakdancing’ to the Jonas Bros music played on stage. Too cute. Yet when I tried to leave, he ran to grab me and hug me so tight, it was hard to leave. The Asst. Principal walked by then, after the third episode, and called to him…off he ran!

Dh is there at the school picking him up now. I’m hoping and praying for a good pick-up, a happy afternoon for ds, and less obsession about the kids and issues that bugged him throughout the day. I’m hoping his mood swings settle down, so he can feel in control and happy. Such a smart, funny, beautiful little boy with creativity, uniqueness and solid out-of-the-box thinking deserves no less.

Autism needs more funding, more treatments available to the average person at an affordable price (or covered through insurance) and more understanding. Less celebs bashing and showing their ignorance about it. More people refusing to do anything because¬†that one child out of 150 is not theirs. Do me a favor — if you’re not a parent of an autistic child, you know one. Or you will. Understand them, and if you don’t, respect them. Ask about their child. See if they just want to talk. Don’t limit it to three minutes before you’re running off to watch a tv show, but give them your full attention. Hang out with them. Take a bottle of wine or a six-pack of soda and some cookies. Share stories about your children, and listen to theirs, the good, the bad, and the ugly. There’s enough people out there who ignore us, stare at us, talk about us, or otherwise want to pretend it’s not there. Be the support they need.

Summertime. I look forward to it each year: kids sleeping in, not having to make lunches, put out clothes, organize backpacks, sign papers, hearing the kids giggle, playing, cuddling, etc. But by the end of day one, it had already begun…”it” being the difficulties that my younger two present whenever forced to co-exist without planned regular activities.

This week’s a bit different, so I do have hope that it will get easier, that this week’s an anomaly. Then again, I am probably just being overly optimistic. My older son graduates high school tomorrow, and we’re having a party a few hours after the ceremony. (This is a ‘what was I thinking?” moment.) We have another grad party to attend in an hour, and one in between our son’s ceremony and party that’s going to be just a quick drop-in. So, we’ve been busy preparing. Lots of food prep, cleaning, shopping. I’m sure he’s picking up on the stress and reacting to that and the change in his daily routines and environment.

I took him and my 13 yos out to lunch today at Rainforest Cafe. LOVE this place, but it’s sensory-overload on a good day. Two minutes after we place our order, Barnacle Boy decides that he doesn’t like that dd has done the MadLibs first, asking me the questions. Major flipout. I finally get him semi-calm, sequestered in a chair away from the table where he could make his mad face and cross his arms as much as he wanted without upsetting anyone else. I go to look at an aquarium to distract him, and smack, there goes the ketchup bottle. Thank God RC uses plastic containers now. Fifteen minutes later, he looks up at me and says “I’m happy now,” accompanied by a big hug and the sweetest smile¬†I’d seen all day.¬†Ahhhh, gotta love his mood swings.

At this point, I’m most worried about getting through ds’s grad ceremony tomorrow morning. Beyond that, we’ll see. T-minus 15 days before we leave for vacation, wish us luck.

This morning was a good one — planned out, scheduled well, in his routine, and he did everything without argument. Then we get to school.

Two of his best friends run up to the meet him at the gate. Not sure who was more excited about that, him or me. I breathe a huge sigh of relief and am darn near tear-y when I see this happen. They play, they wrestle, they run…and he laughs. Ahhhh, I love that sound.

Bell rings. Line up time. A little girl is a bit pushy with him on something, and he calls her a brat. Red flag goes up. I wait until the line goes into the school, and things look okay. I won’t be here when he gets home today, so I remind him and get a hug and kiss. (I know, I know, in the classroom is a no-no…”Mom, the kids will see!”) He walks back to his desk, and then it starts. “My water bottle is gone! The darn cunstodians threw it away AGAIN.” He proceeds to run out the door, I catch him, hold him, he sobs. His little body shakes because he’s so sad he doesn’t have a water bottle now. And bear in mind, it’s a generic Costco water bottle, nothing that I don’t have 50 more of in the fridge. The teacher comes out, coaxes him in and shows him that it is indeed there on the desk, just pushed over onto the girl’s side next to him. Phew. I see relief, I feel the tension go…but not completely. But I had to go, it’s the teacher’s territory and I don’t want to impede routine, and I think he’ll calm down better with me gone. That doesn’t make leaving him that way any easier though.

Did you just hear that high-pitched scream? The kind that makes you wish you were only hearing nails on a chalkboard? The kind that makes dogs howl and cower under a bed? The kind that you think “wow, my kid’s tantrums don’t look so bad now.” That’s what just occurred here. We haven’t seen them this bad in a few weeks, and I didn’t miss them. Nope, not a bit. In fact, for a second, I was thinking “how did I ever deal with this all day every day?” Then he sat up with monstrous strength unknown to small children, and I remembered that this is why we decided to put him on medication. I couldn’t deal with it all day, every day, and neither could he.

I don’t know what is wrong that caused this. Well, I do know what caused his anger, but for it to get to that level? Who knows. On a ‘normal’ day anymore, finding his Gameboy case on a shelf other than where he put it would cause some annoyance and yelling, but not the “Curse you, Bubba, curse you!” that it caused today. This week, he’s out of school, had some Easter candy (though none since Tuesday) and there’s been a few dietary infractions…but this seems extreme for that. Then again, who knows. Maybe the dyes are still in his system from the Easter candy he ate on Saturday/Sunday. Yep, who am I kidding, I helped bring this on.

Right now, he’s calm…after he exploded, the extreme sadness and sobbing kicked in. The heartwrenching, saddening sobs that make you wish for anything that could stop your little one from feeling that sad. That out of control. That much hate. (And hate it was, based on what he was yelling.) There’s gotta be more that can be done, but we’ve tried behavioral therapy…a lot of it. At one point, we were told that without medication, he may never truly get a grip on it. Now that scares me, though I have hope.

During Autism Awareness month, I truly hope not just the non-verbal, handflapping children are in the spotlight. Not that they shouldn’t be, don’t get me wrong, but people need to see ALL types of autism. They need to see the aggression of little kids with strength of someone twice their size, hear the venom coming out of their mouths, and hear a list of what little is available to help. We can’t let the public think that there’s two kinds of autism: non-verbal, and Asperger’s. They need to realize that there’s a spectrum, and this population of kids like mine exist, in big numbers. They aren’t spoiled. They aren’t products of bad parenting. They aren’t lacking self-control..well, they are, but not of their own or anyone’s choosing.

So now he sits eating a milk-free brownie. My older ds is astounded by his brother’s complete and utter lack of an attention span anymore, and I am in a way, too. He’s never had a long one, but this week, he’s bounced from watching Wonder Pets, spreading Pokemon all over my bedroom, spreading stuffed animals (his friends) all over his room, starting to make a book, playing a round of Guitar Hero, and back to Wonder Pets…all in about 8.4 minutes. How is he not exhausted, but everyone in his wake is?

Life with autism is unpredictable. As the saying goes, “If you’ve seen one person with autism, you’ve seen one person with autism.” They’re all so different. Yet, ironically, they’re each predictable in their ‘issues,’ if you will. I know my son will get up and want his pancakes heated on a plate, stacked, then cut in two directions, then slathered in syrup. He wants his ‘coffee’ (chocolate almond milk) in his white cup with the blue lid, and placed at his chair. From there, on a non-school day, all bets are off, but I know it’ll be a whirlwind of activities, many odd, in a short period of time. I know if we talk quietly so as not to interrupt him, he’ll accuse us of talking about him. I know that if a show he’s Tivo’d is deleted, he’ll scream and yell that he’s going to beat up the stupidhead that did it. I know that when his sister gets a phonecall and he doesn’t, he’ll flip out that he has no friends, and we’ll have to limit his talking about no friends to¬†three minutes, or we could fall asleep to that same discussion ten hours later and he’d barely notice, only to have to start the conversation over, verbatim, if our snoring disrupts. And I know that when he falls asleep at night, finally, and only after his clonidine helps, I’ll cuddle him and hug him and tell him he’s the sweetest boy in the world.

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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