A homework project chocolate miracle

Some of my friends know this story, but I want to share what this great Vermont business did for us.

The boychild had a big economics project to complete over the winter break.  Fourth grade is serious, people!  This project involved learning about a local manufacturer who makes their product in the state of Vermont and sells the product on the open market.  He also needed to interview this producer, describe the cycle of money and goods, take pictures/video, and create a presentation on glogster to present to the class.  Needless to say, for a kid with communication delays and big social anxiety who also hates schoolwork in general, this was a whopper of a project.  They started the project before winter break but he was supposed to do the interview part over the break.   We decided to go to the family chocolate business across the street from his school, Snowflake Chocolate.  They’ve been a big part of the community for 50 years and it’s still a family run business.

Snowflake Chocolate

So about once a week we tried to work on it with him, and come up with accommodations that would make it easier for him to do the interview.  He was completely freaked out and had hour long meltdowns even thinking about it.  We got the special educator involved and she worked with him too.  I was at the point of pulling the IEP card to get him out of it when boychild’s dad went over in the morning on Monday and talked to them about bringing him over.  They were SO AWESOME.  They had gotten his list of questions via email from his special educator, and typed up answers so he wouldn’t have to ask or write anything down.  The owner said she has family members with anxiety and they would be really gentle with him.  We told him he didn’t need to say a word, just take pictures, and he did it!  He was pretty grouchy and didn’t make eye contact, but they weren’t fazed by this at all.  They showed him all of their equipment, including this enrobing machine.  They are making marshmallow eggs for easter right now.  It’s pretty cool!

Enrobing an easter egg

 

I can’t express enough how wonderful this business is.  They took time out of their day to show him around and they treated him so kindly.  They gave us chocolate to take home. Please show them some love, if you’re in the mood to order chocolates from Vermont. They were really awesome. Also, the chocolate is very tasty!!  http://www.snowflakechocolate.com/

Sock storage solutions

This came home in girlchild’s backpack on Friday. She says it’s a holder for her socks that her friend made for her desk.  If you look closely it’s even labeled:  ”soks”

Apparently she wears socks to school, takes them off immediately, and stuffs them in her desk. Her friend thought she needed something to keep all of the socks in so she made her this.  Considering the volume of socks that also came home on Friday, I don’t think this was big enough.

Did I mention she hates socks? At least she’s sneaky instead of screamy about it, I guess.

A Vermont sunrise surprise

Too much heaviness in this blog!  Time for a little photographic relief. I took this yesterday morning from my backyard. There are benefits to living in the frigid north: sunrises like this. A little sliver of moon through the trees.

A sliver of moon left at sunrise, early January.

It’s no sacrifice, no sacrifice….at all….

I’ve been reading a lot in the media lately about how the “new motherhood” has led women to give up their hard earned 70′s feminist freedoms in exchange for a essentialist ideal of motherhood that requires women to put the needs of the kids first and throw away their own (see this review of “The Conflict” if you’re not familiar with this natural parenting backlash). I’m not entirely sold on this argument, but I’m not entirely adverse to it either.

Basically, I think she’s mostly right, but I don’t think things are any different now than in the 70′s, 80′s or 90′s when women left their kids at home or put them in daycare to enter careers.  They felt the same crushing guilt and the same expectation that they should sacrifice themselves and their needs for their kids.  Societal expectations have not changed; some women’s responses to them have.  (Full disclosure:  I am one of those extended breastfeeding, cloth diapering, co-sleeping, home birthing natural mothering people she is trashing in that book.)

I think the idea of sacrificing for our kids is hidden in a lot of what we do as mothers.  And especially for those of us who have kids with special needs:  the idea of sacrifice is entrenched in our subconscious.  We would, AND SHOULD, do ANYTHING to “fix” our kids, even if it means giving all of our time, energy, a healthy amount of sleep, and thousands and thousands of dollars.  ANYTHING.

As an example:  the “Gluten Free” movement is hot in our health culture right now, but it has been in vogue for a while for kids with special needs, especially for kids on the autism spectrum.  All you have to do is type “autism gluten free” into google and you’ll get more than 2 million hits.  Gluten Free diets are supposed to result in marked behavioral improvements and reduced “symptoms.”  See this article in Science Daily for the standard pop-scientific take the “possible benefits” of GF diets.  It’s especially popular with the DAN (Defeat Autism Now) crowd.

Going gluten free is not an easy undertaking, especially if you do it right (which you should because you should DO ANYTHING to fix your kid).  It means throwing all grain products out of your kitchen, and stocking it with crazy expensive flours and ingredients.  It means cooking everything from scratch to make sure there are no traces of gluten in your kid’s food.  It means bringing special food to outings, a special GF cupcake that you baked yourself to birthday parties, and saying no, try this to your kid’s every request for normal food.  And if your kid is picky ( if your kid has autism your kid most definitely is), it means cajoling and bribing and threatening and begging.  And lots of listening to your kid scream.  It means sacrificing any semblance of peace at mealtime, thousands of dollars, and hundreds of hours of meal prep time.

And, in most cases, for nothing.  Most recent (real) scientific studies show no benefit for kids on the spectrum who adopt a GF diet.  See this article from the University of Texas, among other recent studies that show no improvement for the majority of kids.

Am I saying that no kids with autism will benefit from a GF diet?  No.  Some kids with true sensitivities, or even celiac disease, will.  But I don’t think there is a higher percentage of kids with autism who also have gluten sensitivity than the general population, and the incidence of true gluten sensitivity and celiac is pretty low (though I know a lot of people will disagree with me about that too.  I will not argue with the Gluten Police–there’s no point).

But my point here is that adopting a GF diet is a sacrifice–and a sacrifice we parents of special needs kids are expected to make, or suffer the guilt of NOT DOING ENOUGH.  Not giving up enough.  What’s more, I think it’s a form of parenting asceticism–to give up, to sacrifice, in order to cleanse and atone for your moral deficiencies.  And this is the heart of being a parent of a special needs child–the gut sense of guilt, that there is something YOU DID that made your kid this way.  And you need to atone.  You need to sacrifice in order to cleanse this sin, this guilt, this moral failing.  Asceticism often involves the body and what we put into it.  I spent an entire semester in grad school studying early Christian asceticism and it’s not hard to recognize in diet fads.  As mothers we give up our bodies for the health of our kids.  Restricting what we put into their bodies is a logical extension.  It’s asceticism by proxy.  Mea maxima culpa.

Cue Elton!

When is it too late?

I never update this blog.  I don’t think it’s writer’s block because I generally have too much to say otherwise, but I think this blog thing is supposed to have some sort of organization and that’s what I am, uh, lacking.  Oh well.

On today’s menu:  the menu.  What do you do for a kid who is now 10 years old and whose eating issues are actually worse now than when he was 2?  A kid who cannot be in the same air space as a cracker without screaming?  Is it too late for him to change?  He used to eat sushi for crying out loud.  Now he eats about 10 things, and half of them are variations on the same thing.  And worse–the fear of certain foods overwhelms him.  He can’t just not eat the things he doesn’t like, he can barely be in the same room.  He often isn’t.

I wish we had been able to get actual therapy, any kind of therapy, for him when he was little and more malleable.  A diagnosis.  I feel like we missed our window and he’ll never eat like a normal human being, never be able to sit at a restaurant with friends who are eating GROSS SCARY FOODS.  Or be able to go out to eat with his own family again.  It was never actually enjoyable, but at least he made it in the door.  Now he waits just outside the door (hyperventilating) or in the car while we rush in for takeout.  I feel like the doors between him and non-disordered, regular human being style eating are slamming shut every day.

His sister has to cover her plate when he is nearby, and we often have to pull a screen across the table so he can’t see her eating or he screams and runs off.  He eats alone most of the time. There are certain foods he will allow her to eat in the living room but only in a certain zone on the rug that is marked in his mind and no one else’s.  I admit that I’m not always (or often) very patient with him.  It has been a long 10 years of fixing the same thing in the same way night after night after night after night and coaxing him down from the “it has a speck of BLACK STUFF on it” cliff.

I know it’s complicated–there are sensory issues involved, phobias & OCD  involved, autism-related inflexibility involved.  But is it really too late?  Is there any way OT could still help, or any other kind of therapy?  I’m feeling pretty hopeless at this point.  I’m not sure I have the stamina to pick this hill to die on, either.  But what are the consequences if I don’t?  He’ll never live a normal social life if he can’t stand to see people eating most of the foods that most people eat.  He’s grown a lot in a lot of different ways and we have seen a lot of progress, but the food stuff has actually gotten worse over the years.  His sister deserves to grow up in a house where she doesn’t live in constant fear that she’ll be screamed at for what she’s eating.

I go back two years on this blog and see how hopeful I was that Cognitive Behavioral Therapy would help.  It did for a short while and then we had a setback and then a crash.  And any mention of that therapy does not go over well at all.  What is next?  We have a new OT next week, but the last time we tried to address feeding with OT it went nowhere.  We live in a small state and services are a little hard to come by.  The nearest big children’s hospital is 2 hours away, and the bigger major one is 4 hours away.  Not a day trip.  Not a weekly trip at all.  He would also have to EAT OUT OF THE HOUSE during those trips.  That won’t go over well at all either.  Our outings have to be “between meals.”  Eating away from home, even a snack, is a major production.  He has routines in place at school that make it possible for him to eat some there, but his choices there are even more limited (bread, bread, tortilla chips, dried mangos, more bread, sometimes spinach leaves, basically.)  I’m really out of ideas, time, and patience.  It has really been a hard 10 years of feeding that kid.  And yet, when he asks me so sweetly to make pancakes (dinner option #1 of 2), because my pancakes are the BEST EVER (how he would know, I have no idea), I still have a hard time saying no.

Any suggestions,  please send care of @drowninginpasta.  Thanks for reading.

Explaining anxiety & SPD to a 6 year old–it’s not a leopard!

Bofh of my kids have sensory processing disorder to some extent.  The boychild’s woes are well documented on this blog, but are mainly tactile.  He has some really intense tactile sensitivity and has since he was a tiny baby.  He used to have a lot more difficulty with noise but that has improved a lot.  The girlchild, who is now 6, also has some tactile sensitivity, though it’s not on any scale close to her brother’s.

However, she has some big shoe issues.  And it’s the time of year when we buy new shoes, and practice wearing them for school.  With–gasp–socks.  I’ve given up on the boychild ever wearing socks again (he went through a brief one year period of wearing a certain kind of socks after much OT, but that didn’t last) but I’m not going to give up on child #2.  Last year she didn’t wear socks and since her feet are super sweaty all of her shoes were just nasty after being worn for a month.  And she didn’t wear socks with her boots, and we live in Vermont, and though I don’t think she’s going to actually get frostbite in the very nice expensive insulated boots she has, it can’t be comfortable and it ruins the boots before they’re outgrown.  Plus it really makes me look bad as a parent with the teachers at school.  Yeah, I send my kid to school without socks in -10 weather.

So today, after her new shoes arrived (these which I got on sale–I totally did not pay that much for them–very cute, very sensory kid friendly with the mary jane velcro style and elastic around the foot, nice and smooth inside, and how can you resist the flowers??)  I told her she could not wear them without socks.  Period.  Not even to try them on.  After some grumbling, she said OK, chose some nice seamless socks out of her drawer, wore the shoes for 5 minutes, and freaked out.  Predictably.

We’ve been talking a lot about evolution and the body this summer (my kids are science freaks) and so I thought it might be helpful to actually explain to her why her body has that reaction to socks.  I told her that when humans first evolved, there were lots of predators around (they watch nature shows and the boy plays Spore, a video game all about evolving and catching prey, so they get this idea) and our bodies had to be able to run away really fast when there was danger.  I said this was a good thing, and that when our bodies sense something scary, our brains send out a very strong RUN AWAY NOW message that makes us scream and run away.  This was a good thing when there were lots of leopards around to try to eat us.  

I then said that now our bodies still have that reaction to scary things even when there aren’t any leopards around.  Like if we see a commercial for a scary movie (she had that experience this summer) our brains send out a DANGER RUN AWAY NOW message even though there really isn’t anything there to hurt us.  Our brains still scream LEOPARD!!! RUN AWAY!!!!  And it’s good our brains still do this, because sometimes there are dangerous things, like if a fire starts we have to be able to run away really fast, but that dangerous things don’t happen to us very often anymore.

I said her brother feels this way when he sees crumbs.  Crumbs aren’t dangerous, but for some reason when he sees them his brain thinks there are a dozen leopards chasing him and sends a SCREAM and RUN AWAY NOW message that is really hard to say no to.

She totally got that.  She wasn’t sure why crumbs make her brother’s brain do that, and I said I wasn’t sure either, but that some people’s brains just work differently.  Which is pretty much the truth.  

And then I tried to apply this to sensory processing disorder.  I said that some people have senses that are so strong and good at feeling things that their brains have this same reaction to sensing some things. Some people are really sensitive to noise, so when they hear a loud noise their brains think a leopard is chasing them and their brains say RUN AWAY NOW!!! and they yell or try to hide.  She has some noise sensitivity so she understood this too.  I said that having really strong senses can be good, because it can make you really good at hearing music or making music, or dancing, or making art sculptures (all things she loves to do) but that it can also be hard.

Which leads us back to the shoes.  I said that some people are so sensitive to touch that when something touches them that they’re not used to, their brains do the same thing as when the first humans saw a leopard.  And it’s really, really hard to tell your brain that there is no leopard there when your brain is screaming LEOPARD LEOPARD LEOPARD GET IT OFF!!!  It’s hard to keep wearing socks and do anything else when your brain is sending that message to your body.

But you can train your brain.  It’s not easy, but you can get used to things like socks that bother you.  If you can wear the socks for just a little while, even though it’s really hard, and do something else fun, or do some calming activities, sooner or later your brain is going to calm down and say, whew, that’s not a leopard.  Your brain can’t keep up the leopard panic for very long.  It gets tired. It will say, I guess there’s no danger.  Those are just socks.  And the next time you put the socks on, your brain might get upset again and say LEOPARD!!  But it will take less time before it realizes they’re just socks.  And the more you practice letting your brain relax while wearing the socks, the easier it will be to put them on.  Soon your brain will just say, eh, socks, no big deal.  Definitely not a leopard.

And if you get your feet ready for socks first by rubbing them, or brushing them, your brain will be calmer and won’t be so surprised when you put the socks on.  I tried to apply this to her brother’s over-the-top behavior (e.g. the summer “sticky butt” problem) by explaining that he feels like ten leopards are chasing him, not just one, and that his brain gets really upset about more things than hers does.  A lot of things that don’t seem like a big deal to us are leopards to him.

She seemed to really understand this.  She hasn’t tried the socks on again yet, but I’m feeling pretty spectacular about my explanation.

Lemons into Lemonade

If you’ve read my blog (and SO many people have, really), then you’ll know that about half of my posts are about the various crafts on which I spend all my free time a-wasting, and half are about the various struggles of raising a child with special needs.  This isn’t a craft blog or a special needs blog, really.  Maybe that’s why I have so many readers! /snark

That is, until now!  I’ve just finished a project that has an emotional significance for me, as I’ve repurposed a few items from the past, both cherished and frustrating, into something, well, usable and just plain fun.  This is a lemons into lemonade situation, people.

I have christened this project the “chewed shirt quilt.”  In short, I’ve made a lovely quilt out of about a dozen shirts that the boychild chewed to pieces.  They were lovely shirts, they were, all from Lands’ End in lovely colors.  They were each worn about 4-5 times before the collars were pulverized.  One shirt he wore backwards one day so it was chewed on both sides.  And another was chewed on the bottom when he ran out of collar.  He has only gone through a few phases of this, thankfully, but this particular time really upset me because at the time he only wore these really pricey shirts from Lands’ End–$12-$15 a piece, if I remember correctly.  So he ruined $100-$150 worth of shirts in a short time.  T-shirts make bad rags, and since I couldn’t bear to look at them, or trash them, I shoved them into a bag into the closet with my other fabric scraps.  We transitioned him to a surgical tubing necklace that I made, and then he passed out of this phase into some other stimming obsession (currently: playing with his penis.  He’s 9 1/2.  I know it’s only going to get worse.)

A few months ago I found these shirts when I was looking for some other fabric for a craft, and as I’ve been experimenting with quilting, I love big bright colors, and I am really into modern quilts without a lot of fussy piecing, I thought that I could make something really lovely out of this shredded pile of my nerves still decent, good quality knits.

And the chewed shirt quilt was born.  It has taken me a few months to finish, as it’s just really big and I frankly hate making large quilts, but I wanted something I myself could use on my bed.  I wanted to make something for MYSELF for once.  As I was in the process of picking fabrics, I remembered that I had a really nice duvet cover that was a wedding gift 15 years ago (!) from Garnet Hill, and though it has seen better days, it might make a really nice quilt back.  It’s very simple–blue and light blue stars on a white background.  The symbolism isn’t lost on me either–our brand new marriage blanket on the bottom, the test of our marriage on top.

Here it is, with a lovely model.  (She really has a career ahead of her, in some kind of marketing, I’m sure.  This girl could sell anything.) (I also made the nightgown she’s wearing!)

The full masterpiece.

Claiming the quilt for herself!

Front and back.