Autism Watch: 2007

Posts Tagged ‘casein

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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My sweet cuddly little boy woke up five minutes before his new Spongebob alarm clock went off (ukelele sounds, no less) and I found him dressing himself. Cool, right? Except he was dressing himself in camoflage shorts and his school’s ‘spirit’ shirt, which is supposed to be worn on Friday. I remind him that it’s okay for now, since we’ll be cuddling under the blanket on the couch until breakfast time (a batch of dairy/casein-free pancakes I made last night) but that he’ll have to change in time for school. After all, it was maybe 35 degrees out as I made this request. I can see the snow on the foothills behind our house, and the heat is kicking on/off consistently. I should have wondered then if he’d really be okay, but he was still being so sweet, so cuddly…

Fast forward 20 minutes, as he finished eating some pancakes (it would be and understatement to say he wolfed them down), and I started suggesting..quietly, hesitantly, gently..that he get dressed into appropriate clothes. Click. The switch went off and the dam broke. All the anger available came flying out of this little guy in a rage. Hitting, screaming, yelling, kicking..it all came out in a rush. We eventually got him to school, dd driving and me holding the shoes that he kept throwing as I tried to get them on him. A quick meet with the teacher and his one-on-one to explain the morning, and off I went. I did try to say goodbye to him, but his little head just nodded. He refused to look at me, and no words came out. Sad way to have to leave a child at school in the morning.

The mood has continued even after he gets home from school. The littlest things are setting him off, and the yelling starts up again. A warm bath. Some nice warm cinnamon apples. Cuddle time. Temporary reprieves. And it’s only 6:30pm. What caused the sudden bouts of anger? Not sure, but we’re hoping to help him calm himself without anymore yelling, and to figure out what’s causing it. We’re visiting Disneyland on Wednesday for dd’s birthday — we’ll definitely be getting the special guest assistance pass again, and this will be our first trip being casein-free, wish us luck.

A bit of a different blog entry today — I wanted to take a minute to high-five Disneyland, especially since Knott’s Berry Farm and Magic Mountain have decided that autistic people don’t rate enough for special accommodations that actually, well, accommodate their needs. 

Ds has wanted to spend his birthday at Disneyland all year. We did it last year, so that started a tradition. We are annual passholders, so we go every few weeks but there’s something special about going for a birthday celebration. Disneyland manages to make it fun for the whole family, and today was no different. When we arrived at California Adventure, we easily renewed our guest assistance pass (thank you, Disney, for keeping that process painless and quick) and ds became the proud owner of a pin that announces it was his birthday. Huge smile on his face. To him, that button alone was a special pass. Then the guest services representative handed him the phone, where Goofy wished him a happy birthday. Even huger smile. (Huger=my new word for the day.) Then it was on to Tower of Terror, the first of many rides.

Fast forward hours later to our visit to Woody’s Reindeer Round-up by Thunder Mountain Railroad. Decorating, then eating, the huge sugar cookies is something the kids look forward to every holiday. There, and everywhere we went, Disney staff was telling ds “happy birthday!” Stuff like this, something that seems little, really does make a big difference.

Every ride we went on had a line of sorts, so the ability to avoid those lines makes the day possible. Without it, we couldn’t go to Disneyland. (And because Knott’s and Magic Mountain don’t have this, Disney’s got a very loyal fan base of families with autistic children.) We do want to teach line-waiting skills, but there’s a time and place for that, and a crowded amusement park is not the place. Children with autism deserve the opportunity to have fun, like every other child.

So where does the cotton candy come into play? Ds loves the stuff. Has to have it every trip. You know autistic children and routines, repetition, sameness, etc. Sometimes it can be hard to find when you need to, but today was the worst time we’ve had yet. We’d forgotten that with the 8pm closing, 7:45pm fireworks show, and several other earlier shows, half the park would be inaccessible, with booths/carts shutting down or moved out of their normal place. We asked a lot of Disney staff, only to get conflicting suggestions on where to find it. I finally stopped a woman who was carrying it — she didn’t want to even talk to me and tried to get away, but I was a mom on a mission, and I didn’t think I was asking much of her to point me in the direction of the cotton candy cart. Mission accomplished, though dh had to run and just made it in time before the cart rolled away. Extra exercise to burn off the Hefeweizer from lunch, right?

Next visit, the cotton candy’s being bought first time we see it, and stuffed in the stroller storage until it is time.

Onto other things — we’re gearing up to go casein-free in January, and maybe even gluten free, too. I’d love to go fully GFCF, yet we’re not sure. Before someone flames us for at least not trying it, fyi, we did. Almost three years, GFCF for several months, with only a minimal improvement, and even then, it was temporary. While I fully believe in GFCF and biomedical treatment, I also believe that as a community we need to be understanding of each other, which means not being dismissive to those who don’t believe the same things. I’ve asked a lot of questions on a lot of lists over the years, usually with wonderful results and great support I get nowhere else, but there’s been a few who refuse to answer because we’re not 100% GFCF, or because we’re not chelating. I hate to see more stress added to the load of parents of autistic children because one side thinks they are more ‘right’ than the other side. Why have sides? Why not just one big group of people with diverse opinions and respect for everyone?

Anyway, back to my point — kudos to Disneyland. We will continue to be annual passholders as long as Disney continues to be truly accommodating to guests with autism. We will speak with our words in praising emails and blog entries, and with our money by purchasing Disney gear. We’ll continue to tell everyone what a positive experience our visits are, and how happy our little one is at each visit. We can’t say that about everywhere we go, and let’s face it, ds doesn’t want to go everywhere. In fact, he wants to go few places…and Disneyland is one of them.

And last but not least, pray or think happy thoughts for us. Ds’s birthday party is this weekend, and rain is forecasted for later that afternoon. If we can get at least enough rain-free weather to have the bouncer for some of the party, we will be satisfied. Ds is counting on the bouncer. And at this point, still not even one R.S.V.P. out of all 21 kids in his classroom. I will be talking to his teacher tomorrow to find out if it’s true that kids are saying they’re not coming, or if it’s just a case of parents not realizing the R.S.V.P.’s still are helpful. I would much rather it be the latter, because my little sweetheart deserves a party, and compassionate friends to at least visit. (But compassion is lacking in the world anymore, and less and less is it being taught to kids.) I can deal with no R.S.V.P.’s — I can’t deal with no guests. I’ll update later.


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