Working 'step two'

Miss M used to have severe anxiety. A big part of that was the diet - a side effect of eating the wrong diet when you have Fructose Malabsorption is that tryptophan isn't absorbed well. No tryptophan, body can't effectively make serotonin. Imbalance in serotonin = mood issues (depression/anxiety/rage).

So she had a pretty bad case of it, tilted toward anxiety. Turned into a little zombie when people talked to her. It was so bad that at the early intervention assessment, she couldn't even close her hand on a toy. Just sat on my lap staring straight ahead. Kinda scary, actually. The home visit with the psychologist was no better. Sat on my lap, couldn't speak, couldn't move. Wah!

But the diet change helped tremendously. Funny that! In four days, she was a new person. But she still had a baseline anxiety issue.

The psychologist was great - not the least being great with the parental side of things.

She asked (seeing M all catatonic) if we took her out places. No, really, we'd cut back on all activities that caused her to shut down.

Good job, mom. You guys have done a fantastic job at step one of the process - protecting your child from harmful situations.

And now, step two. Step two is giving her the skills to safely and comfortably participate in life, including situations that she 'naturally' finds stressful. Time to give her the skills to participate in and enjoy the things that right now are 'too scary'.

It was nice to hear that we'd done so well at step one, even though I knew we'd pretty much skipped step two at that point. Didn't even realize there was a step two!

I think a lot of parents don't think about step two. We're so media trained to worry about safety, to fret for the dangers, to be wary, that we don't even think about coaching the skills for enjoying uncomfortable and 'scary' situations. Sure, we coach for survival (what to do if a stranger approaches you inappropriately), but what about just 'nervous'? What about just being around strangers with your parents? What about all the other skills for handling unknown or uncomfortable situations?

Once we knew there was a 'step two', we kicked into gear on coaching, prepping, practicing, giving alternatives to try, and being backstop/safety net. Told her where we were going, what we'd do there, who would be there. Reminded her of her skills for talking, playing, and asking for help when she needed it. Let her bring her big stuffed shark to church (where it could add a layer between her and 'people'). Explained the rules for parties, set expectations, talked about events before they happened, gave her a job or role for the event...

And it has worked. Still works, and we still use it. Birthday parties are now fun, and nobody knows she has that much baseline anxiety. Most people would guess it is Miss R who had the big scary fear of people and events. Miss M? She's off into the puppy pile, racing ahead, in charge of herself, certain of what she's doing, knows how to handle the emotional discomfort.

She's becoming an old hand at working step two.

Comments

[Allison]

Via damomma's twitter account, I learned of the blog http://pediatricot.blogspot.com

Her post today may be good food for thought, too -- or at least her follow-up post coming soon (with techniques) may be helpful. Yay for mama doing the right thing in the first place!

[Cassie]

So, Hedra, how do you actually *do* the "coaching, prepping, practicing, giving alternatives to try, and being backstop/safety net." I have a little boy (3-yrs-old) who has massive social anxiety issues: for example, we can't get an audiological exam done to see if he needs tubes put in his ears because he won't look at or interact in ANY way with the audiologist. He did the whole catatonic thing when we started a mummy-and-toddler dance class, and we spent the first term sitting on the sidelines watching -- although, with a little encouragement, he will now enthusiastically join in *when they do something he likes*. We do, automatically now (learned that skill really early, thank goodness), tell him waaay ahead of time, and multiple times, where we're going, what we'll do, who will be there. And with things like the dance class, I try to let him stay mostly in his comfort zone, while pushing him gently, in tiny increments, out of his comfort zone whenever it seems like he might be able to manage it. BUT! I still feel like I want to help him develop skills for dealing with situations where he's uncomfortable, and I just don't have the, I don't know, vocabulary? for talking to him and helping him identify what he needs and what he can already do and all that. So, what do you actually say?

[stillbecoming]

And what do you do within the diet to help a tryptophan-malabsorber? We may have this going on. . .We've had behavior break-throughs when we avoid HFCS, and vice versa. Not total fructose avoidance, but there's got to be some degree of malabsorption, so I assume some degree of the tryptophan thing may be at play. And anything to help the OVERWHELMING mood issues.
Thanks!!

[hedra]

@cassie, I'll do a whole post on the verbal techniques, but there are several places to look for reference (since I won't get to those this morning).
1) Helping Your Anxious Child and Your Anxious Child (two books) - between the two of them, there are a ton of very useful bits of advice. I can't remember which one was recommended by the psychologist, but one was, and I found both useful. They take different approaches, so they work with different aspects of the problem.
2) Social stories, which you can find instruction for online in ASD groups. The process is effectively pre-telling the 'story' of what can/will happen at any event. Including options ('when someone comes too close, you can say ... or, even say ... or do ...')
3) Selecting 2 or 3 (or 1 for younger kids) 'opt out' methods when things get to be too much.
4) Using social proxies for the child (the 'prototypical' ventriloquist doll thing - talk to this, this will talk back).
5) DIET CHANGE. Even if you think it doesn't play a role, try cutting back on anything with apple, pear, peach, mango, watermelon (juices/sauces/fruit), hard. And cut out HFCS as well (or dial back hard). When someone is already facing an issue like this, maximizing all other functions has huge impact. Even though only 1 in 3 kids has Fructose Malabsorption ('only'), the US diet is so high in fructose, fructans, and polyols that even high absorbers can easily max out and develop symptoms.

@stillbecoming, check my wiki (link on right), and consider joining the yahoo group Fructose_Malabsorption_Australia (my group - AU research is ahead of everyone else, so far). The diet change isn't removing all fructose, but balancing it with glucose, with a maximum load across a three day span. There are resources (handouts, files of diet suggestions, a spreadsheet) on the site that give you a place to start. Number one is cutting out wheat, apples, pears, pit-fruits, onion. They're all killer. But it is way too complex to explain here (once you get a handle on it, it becomes easier). Oh, and there are diagnostic tools for finding out if FM is the real issue, or if there's a secondary issue.

[Cassie]

Hedra, how big an effect is wheat for fructose malabsorption? Because I have a near-total non-fruitarian. He will eat little bits of banana, a few slices of apple, a handful of raisins -- but only one out of those three, and only once in a very blue moon. He won't go near juice. We also steer completely clear of HFCS (glucose-fructose here in the UK). But my kid would live on wheat in almost any form if he could (pasta, bread, cookies, crackers, cereal), with a few potatoes and fish thrown in. Oh and dairy -- gallons of milk and much cheese/yogurt. (He gets veggies, but only in pasta sauce or on pizza, for the most part -- and he has a keen eye for the sneaked-in onion, which he will avoid if possible.) How much would that wheat potentially be affecting his anxiety? (Except maybe I don't want to know! I can't begin to think how I would feed him if I had to get rid of wheat!)

[hedra]

Wheat is a biggie - it has both fructose and fructans (long chains of fructose with a terminal glucose). That said, there are some people who don't react much to fructans, and for them wheat is not as big a deal. Whole grain is worse than white. (go figure!)

We've taken the wheat-mad children and moved them onto rice noodles. Asian groceries tend to have plain rice noodles in a variety of shapes and sizes, usually cheaper than any mainstream grocery in the US. Has to be white rice noodles for most kids (some will tolerate the brown rice, but most don't). White rice, potato, rice noodles, gluten-free (and fruit-free) breads, oatmeal, oat and rice cereal (some corn, but not much)... there's a lot of range.

If you're not dealing with catastrophic reactions, you can try just cycling in non-wheat days. 1 day in three can be a wheat day, the other two can be minimal (it isn't total exclusion like celiac or allergy, but low enough to not create a reaction, which is individual tolerances). Or, no more than one meal a day has wheat. That sort of thing. Best test, though, is to do 4 days no wheat, and see what happens around day 3-4. If you have different (better) behavior on day 4, odds are good that wheat was a major problem (provided you also stayed off the other problem foods). It could still just be a contributor, even without major changes, but then you have less restrictions to apply later.

My kids used to eat wheat every day, so I know the 'AAAAHHHH!' panic reaction thinking about taking it out.