Monday, December 22, 2014

Aidan… With Eos does Halloween

As December draws to a close, I realize that I haven’t really had a chance to reflect on Halloween.  So, how does a food-free, pumpkin-allergic boy with high anxiety and a hatred of costumes do Halloween?  Very Carefully.

It takes some planning, to be sure. 

Hurdle #1 – The costume.  The boy hates things that touch his head, face, or neck.  Also, he’s not thrilled with pants that don’t look like his regular everyday pants, shirts that do and/or don’t have sleeves, jackets, hats, or nudity.  He hates shoes that look different than his normal shoes, boots, sandals, socks with “things” in them, and being barefoot.  So I can tell you quite honestly that if getting dressed every day is a war, then a Halloween Costume is a Nuclear Bomb.

By this age (almost four), most kids have some idea of what they’d like to be.  The idea might change daily (hourly?), but there are ideas out there.  Ninja Turtle.  Queen Elsa.  Spider Man.  Sharknado.  We don’t really have that here.  Though I don’t know what every child with Autism is like, my child with Autism is too literal to really “get it” – he knows that he isn’t a Ninja Turtle, so how absurd to dress up like one.

Once we get through that, with assurances upon assurances that we’re just pretending, isn’t that silly!?, we still need to figure out who/what we’re pretending to be.  This year, it really just fell into our laps.  After a particularly positive visit with his GI, Aidan looked at me and said “Do you think I’m Doctor Liacouras?”  I can make that happen, kid!  Traditional white lab coat with a stethoscope wouldn’t really do – Dr. L is a Surgeon and Surgeons wear Scrubs – a quick query to my 200 closest friends got us a couple of pairs of embroidered scrubs, ready for Halloween happiness.  Since our little doctor-to-be has no fewer than five doctor kits of his own, accessories were already covered.  We lucked out here – scrubs are as close as humanly possible to pajamas, and it only took Aidan a couple of trial runs to get used to wearing them.  By Halloween, putting them on was a privilege! He now has scrub options, and can give you a scrub fashion show.

Hurdle #2 – The d├ęcor.  Okay, so pumpkins.  We don’t do pumpkins.  The boy is severely allergic, think anaphylaxis.  Since I take death pretty seriously, we don’t play around, and there were no pumpkins to be found in our household.  No worries though – we had plenty of faux pumpkin love, tubie-style.

Hurdle #3 – The treats.  This is the big bad.  And the problem is two-fold – both at school and out in the community.  I’ll tackle school first.

As Halloween approached, we got a note home from school inviting us to come visit for Aidan’s Halloween parade, and then stay to help celebrate by decorating cookies.  Really?  I had to say something – honestly, WHY do three-year-olds need cookies on Halloween?  Is a Halloween Craft really just too disappointing?  I responded with an email:

I got the note about next week's Halloween Parade and cookie decorating activity.  Obviously, Aidan can't participate in cookie decorating, but I would like to help find an alternative activity that he can do so that he won't feel excluded.  It's very important to us that Aidan be able to participate in these activities with his peers as often as possible.

In the future, please let me know if there's anything I can do to help make celebrations more inclusive by taking the focus away from food.  I would be happy to help provide crafts or activities for his classmates that would allow everyone to safely enjoy the celebration together.

I don’t know what I’d hoped to accomplish – I just needed them to know that whether they knew it or not, they were excluding Aidan by choosing something that literally every child but him could do, and it’s not the only way to celebrate.  To call their response disappointing is an understatement.

Thank you for your email. We do have crafts for the children as well. Please understand that when planning Halloween we tend to keep activities very simple as very few families choose to stay after the parade.  I do however understand your concern and would never exclude Aidan from the class.
Have a nice weekend.

It’s hurtful, I think, because I’ve told them that they’re excluding him and their only response is a halfhearted “Oh we would never…”  I did the best I could, because that the end of the day, we are his parents and it's our job to fight these battles.  I sent him foam shapes that might look like “cookies” along with glitter glue “frosting” and foam sticker “sprinkles.”  I wasn’t at the party, but my husband tells me that he had a good time.

I also sent in non-food treats for all of his peers, because that’s how we roll.  His classmates’ parents either know he has severe allergies, or think we’re really pointlessly passionate about not eating ever.  Either way, I think they went over well.

I’m sure this is just the first of many run-ins (Actually, not the first, just the most recent.) with school over inclusion.  It just breaks my heart to know that they don’t care.  “Easy” won out over “Right”, and there’s been a noticeable difference in the way his school has treated us since this email exchange. 

But back to the positive stuff – Treats Out and About.

Our Halloween tradition is to Trick or Treat with Aidan’s best friend, Teddy.  This year was no exception, so Dr. Aidan and Engineer Teddy went out on the town and collected truly insane amounts of candy from every “Halloween House” in Teddy’s neighborhood.  Having prepared extensively (thank you, social stories, TV shows, and visual schedules!), Aidan was SUPER successful this year, and even said “Trick or Treat” at almost every house!  Well, halfway through, he forgot the phrase “Trick or Treat” and subbed in “Halloween!” – But, you know, samesies!  

I prepared ahead by making Aidan-safe just-sugar lollipops (Recipe here), and snuck one in his bag of loot.  At the end of the night, he enjoyed a lollipop while I went through his stash and picked out what he could keep.  We actually saw a few Teal Pumpkin houses, where non-food treats were given out – how awesome!  Aidan wound up with quite a few things between his school friends and Teal Pumpkin houses, and of course, Teddy’s wonderful Nana.  

The next day, we took Aidan’s candy bucket to the toy store, where I set us all up for success by placing one toy that I knew he’d love in eyesight, and offered him the opportunity to buy it with his candy bucket.  He was so happy and very proudly handed that candy over.  He never once asked for the candy again.  Spur of the moment decision, but I think it will be a new tradition, because it went over really well!

So that was our Halloween in a nutshell.  So much success.  I hope to be able to work more closely with his school in the future to make their celebrations less exclusionary, at Halloween and all year long.

Monday, September 29, 2014

Tubie Whoobies!

Recently, we found out that a popular tube pad store, Tubie Whoobies, decided to start giving out a free sample pad so that new customers could try the product out.  I figured we had nothing to lose - I've always wanted to try them, but they're quite a bit more expensive than the pads I've been buying Aidan, so I just couldn't justify it.  How much better could they really be right?

My sample showed up pretty quickly, and Aidan was overjoyed to find out that it was a heart!  That's the first big selling point - they're actually shaped - not just round and themed based on the fabric.

He begged to wear it RIGHTNOWPLEASEMOMMY!?!?!?  Sure thing, sweet pea!

He loves it!  He showed everyone at school the next day, and despite some initial confusion regarding the location of "MY HEART!!!", I think it was a hit.

For my part, I'm happy too :)  It's been washed a couple of times now and still looks good.  No irritation or allergic reaction on his skin or around his stoma.  And the snaps seem to be good quality - not always the case with some of the more inexpensive tube pads.  I can tell that quite a bit of work goes into these.  They're really well-finished and I think they'll hold up nicely as we wash and wear them to death over the next few years.

I do still like having some of the other tube pads in our stash, because I like having velcro closure on the days that my osteoarthritis is flaring up (Tubie Whoobies only come in snap) - but Tubie Whoobies is the only company I've found that offers these shaped pads - and there are great options for older kids too.  A lot of the round pads look so babyish.  Tubie Whoobies has a lot of sports and truck option for older boys, and princesses for the girls.  (There are actually hundreds of options on their page, including sets that offer cost savings over buying the pads individually.  As for how many you need - it probably varies by person and how often you like to do laundry.  We go through one pad every day, but we know people who need to change them more often due to more drainage from the stoma.)  We just placed our order and chose these awesome "big boy" tube pads:

Wednesday, September 24, 2014

Subscription Box Review - Nibblr

As you know, I recently tried (and raved about)  While on the hunt for boxed mystery snacks, I also came across Nibblr.

Nibblr is a similar concept, so I gave it a try.  I got my first box for free, and so can you - just go to and enter the code FBFIRSTBOX (full disclosure - I just googled to find a free code, and this one worked for me).

In fairness, I had already been through the process with Graze, so I wasn't exactly looking at this with fresh eyes.  When I look at Nibblr, I can't help but compare to Graze.

Nibblr's website is not as easy to navigate.  I found it more difficult to categorically remove snacks (things too high in calories, things that contain nuts, etc).  I also found that I wasn't enticed by many of the snacks offered, so I trashed a lot of them.  I was downright annoyed by how difficult it was to determine what was in each snack - the information is all there, but it takes multiple clicks to find it.  And a nitpick - there are a lot of peanuts, which I don't eat.  There's no referral bonus system, so while Nibblr offers a free box to new signups, there's no incentive for me to refer you.  Try one, or don't, it doesn't matter to me.

On the positive side, Nibblr is definitely more "artsy" - the box is very cute and it came with a cute little mini-poster.

Yes it is!
I do like that the site shows how others are rating each snack.  Though it does make me wonder if I'll hate something that shows up in my box if only 29% of other users liked it.

My box came with the following snacks.  I don't know if it was coincidence, but all four of my snacks were only 2 PP+ each

Cheddy at the Ready - 2 PointsPlus - cheddar cheese crisps.  40% of others loved it.  I don't know who these people are, because I really disliked them.  They had a really bitter aftertaste - almost like burnt cheddar - and were way too hard and crunchy to be pleasant.  I had high hopes, but I ate half of one and threw the rest in the trash.  Still craving cheese, I tried the next snack.
Cheesy Crostini - 2 PointsPlus - Cheddar asiago crisps.  48% of others loved it.  These were ok.  The asiago flavor definitely comes through.  There's a bit of a spicy kick to them.  Texturally, they're good - not jawbreakers like the Cheddy at the Ready.  I ate them because they were available and I wanted something cheesy, but I would likely not seek these out again on purpose.
Neopolitan - 2 PointsPlus - dried strawberries, shortbread cookies, and cocoa ladyfingers.  56% of others loved it.  Eh, I didn't hate it.  Similar to the Cheesy Crostini, I ate it because it was open, but I wouldn't seek it out.  The shortbread cookies were pretty flavorless.  The cocoa ladyfingers - also fairly flavorless.  Most of the flavor comes by way of aftertaste.  It wouldn't be such a problem if it weren't for the strawberries.  They're freeze-dried, but they taste stale and mushy.  Blegh.  Freeze-dried fruit should be crunchy, Nibblr!  Fail!
Punchy Fruit - 2 PointsPlus - Pomegranite infused cranberries, pineapple, and passionfruit lemon fruit pieces.  29% of other users loved it.  This was my favorite, by far.  I actually wish I could get this from Graze.  Raw pineapple gives me Oral Allergy Syndrome - itchy mouth, rash, sometimes hives - but the dried pineapple didn't bother me and was actually pretty flavorful.  The pomegranite cranberries were delicious - a really sweetened-up version of a cranberry, which isn't normally something I enjoy.  The passionfruit lemon fruit pieces were interesting - texturally, kind of like a fruit snack, maybe a bit softer.  Very tasty.  All in all, just a nice fresh fruity snack.  

In conclusion, I will not be keeping this subscription beyond the initial free box.  I'm glad I didn't try this before I found Graze - it might have soured me on the subscription snack box idea entirely.