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 décor.  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.

No news is good news...

I haven't written in a while.  I thought it was because I had nothing good to say, but I realized last night that it's really because I had nothing bad to say.  Things are pretty stable - we're just treading water until Aidan's next procedure - scopes (upper & lower) with biopsies on May 15th, as long as we can get and keep him healthy by/until then.

On the feeding front - he's on 18 hours of continuous feeding, which translates to something like 8am to 5pm, and then bedtime to wakeup.  So he gets an hour or two off the backpack in the evening, which he really enjoys.  We're feeding Elecare - and (knock on wood) he seems to have leveled out a bit on that too - so maybe he just needed to adjust?  I don't really know, but I do have some hope that this scope will go well.  It's nice to have hope - because whether I'm hopeful or hopeless, the outcome will be the same.  It's nice to have hope.

On the care front, I don't think I've mentioned this, but Megan is moving on.  It's not surprising to any of us, but Aidan obviously has no idea.  He's going to miss her and the girls - a lot - but they are doing what's right for them and we support that.  We don't know yet what we're going to be doing with Aidan - I think having a nanny was the difference between keeping my job and losing it during this last hospitalization - but we'll find the right answer.

What we're running into is that the larger daycare centers are unable to do anything with Aidan's tube due to their corporate regulations.  The smaller (non-center) daycares are willing to learn but don't all give me the same "competent" feeling.  Bringing in a nanny (not a live-in) is also an option.  We are just checking out the daycares in our area first, because I really like the idea of his being with his peers instead of at home alone with a nanny.  He's doing so well with Teddy and Chase that it breaks my little heart to realize he won't have them after June.

This scrumptious little pigpile is Aidan's little piece of Heaven

We are also waiting to get a Social Worker assigned to us to help us figure this all out.  I don't know what kind of help he/we qualify for, but they may have more ideas than we do.  It's all up in the air right now but I trust that we'll land on a solution.

Feeding Tube Awareness Week - Story Time!

Aidan and Megan did something really, really special for Feeding Tube Awareness Week!  They visited a local storytime and spread awareness the good old fashioned way!

Here's Meg, to tell you more...  

Sometimes what can be terrible about caring for a toddler is having to step outside of your comfort zone and realize, “This isn’t about me. This is about <insert child's name here>.” We are responsible for our children’s daily experiences, social interactions, and exposing them to the world – and the world to them. That is what Feeding Tube Awareness Week was all about; Aidan and exposing the world to him, to that which sets him apart from other kids, to his tube. 

Story time at the Perkiomen Valley Public Library quickly became a regular item on our “Things We Like To Do” list. Especially following the really disappointing start we had finding inviting places to go. The week we met Hillary, the volunteer who runs story time, Aidan joined the group to draw, read, do his craft, and eat a snack. Aidan ate the way he does – a little from his cup but mostly from his tube. Mothers and children looked, while trying not to stare, and asked the question, while trying not to offend. (Note: We don’t mind, really. We want you to ask. We want to tell you. We want you to understand this little boy is mostly just like your little boy but a tiny bit different.) After snack an amazing thing happened. Aidan was treated normally. The boys and girls ran and chased and kicked balls with Aidan just like they did with the others - but more importantly, mothers didn’t stop them. (We constantly find parents warning their children away from Aidan. Trust me, we get it, no one wants to be the parent whose kid breaks the “sick” kid, but that is exactly why we want you to ask.) Caroline and I looked at each other and smiled. We liked this place and these people, and we knew we wanted to be a part of it. 

As we were leaving that first day, we took some time to talk more to Hillary, who did ask questions and was a little shocked we were so excited at the normalcy. I mentioned to Hillary that Feeding Tube Awareness Week was coming up and asked if she minded if we could have the floor that day to educate these curious toddlers and parents about our life and Aidan’s feeding tube. She emphatically said yes. 

Feeding Tube Awareness Week was February 10-16 and in it’s 3^rd year. This was our first year to participate.

After saying our hellos and getting out our crayons, Ms. Hillary handed out drawing sheets that said

“G is for GROW. Draw a picture of things that grow”

Lexie drew a picture of flowers while Brody drew a picture of trees.  Aidan drew a picture of... Well, Aidan drew a picture.

Then it was circle time for our story.  Ms. Hillary did an amazing job talking to the kids in a way they could understand what can be a complicated topic - even (especially?) for adults. She talked about how little boys and girls grow big and strong by eating nutrients they can get from eating healthy foods like apples, milk, and eggs…and some of our favorite foods that aren’t so healthy, too (like pizza!!). She asked how those nutrients get into our bodies:

“We eat with our MOUTH!” answered Drew.

“Yes, we eat with our mouths,” replied Ms. Hillary, “but Aidan has a special way to get nutrients into his body. Sometimes, when Aidan eats food it can make him sick so he has a special tube in his belly that helps him get his nutrients so he can grow big and strong, too. Today, I am going to read a story about his special tube.” 

As Ms. Hillary read our story , Aidan and I passed around our Tubie Friend, Puppy Pup, and Medical Me, Baby Aidan, so everyone could see what his tubey looks like. While looking at the tubey in Baby Aidan’s tummy, Drew asked his mom, “How does it get into his mouth?” She answered that it doesn’t and that it goes straight into his belly. “How,” he asked? Then I took out a bolus feeding kit and showed him how we attach it to the tubey and where we put Aidan’s special milk. Then Drew took a turn giving Baby Aidan another bolus feed. (I was grinning ear-to-ear. Aidan was eying Lexie, who liked Puppy-pup a little too much.)

Instead of a craft we played a very special game: Pin the Tubey on the Tubie. Our Tubie, Mr. Penguin, needed help finding the right spot for his tubey so he can get his nutrients, too!!

Charlotte was our big winner!!

After our game it was snack time. Aidan sat and drank Neocate from his cup while the other kids drink their apple juice from theirs. Moms pointed out that Aidan is drinking a special milk and that is why he doesn’t eat goldfish and raisins like them but that’s how he grows. (Under normal circumstances, I would have bolus fed him but we are having difficulties with Aidan tolerating his feeds lately - which is the subject of an entirely different blog post.)

Then the kids, having seen what they needed to see and learned what we wanted them to learn, did what kids do…they ran off to play. Just. Like. Normal. 

The other moms and caregivers that came to story time were really wonderful. They asked questions about Aidan, his disorder, how he was, what we’ve been through, how he was doing,…you know, the usual stuff. Then, happily, the conversation stopped being specific to Aidan and his disorder (we are happy to talk about it but we also want people to see he’s more than his disorder and his tubey, he’s a totally awesome 2-year old boy). We started talking about keeping our children safe, people we know with some food limitations and having a new perspective on that. (I let out a deep sigh of relief.)

Kids are easy, they aren’t prone to getting stuck over things. Kids rarely question why there isn’t cake at the birthday party. It’s the parents we often worry about judging us. What are they thinking? How angry will they be at the inconvenience? Will they be mad if we have a food-free party?

I thanked everyone, numerous times, for letting us come in and take over for the day and share this with them. They responded with, “No, thank you, for coming in and teaching us.”

…then I breathed another sigh of relief.

Team Shields Feeding Tube Awareness Week 2013: WIN!

Special Thanks to Mini Buddy for giving us Puppy Pup!  And to Medical Me for Baby Aidan!  And of course to My Tubey for the wonderful books!

It's Clifford!

Last week, Aidan and Megan went down to the Museum for a very special event.  I'll let her tell you about it :)


Are you familiar with author Norman Bridwell? Yeah, me neither. But I am familiar with Clifford, The Big Red Dog whom Mr. Bridwell is famous for giving the world. (Thank you, sir, sincerely!) In honor of his birthday (Norman Bridwell's, that is), on February 15th the Philadelphia Please Touch Museum was hosting a special day in which you could come, meet Clifford, and get your photo taken with him. In preparation for the day, we learned about the color red (which is also Aidan's favorite sign these days) as well as read a few Clifford books. (I was so excited to meet Clifford that I need a plausible reason for getting my picture taken with him and my two-year old charge was the perfect excuse but I wanted it to be a little special for Aidan, too.)

Meeting Clifford the Big Red Dog went a little like this:

(show up at museum, stand in line for pictures)
Mimi: Aidan, do you want to meet Clifford the Big Red Dog
Aidan: (spinning in circles)
Mimi: Aidan, aren't you so excited to meet Clifford?
Aidan: (giggles and runs under the rope barrier, Ms. Brookie chases and brings back)
Mimi: Aidan, do you see Clifford?
Aidan: (moves head left to right <looking>)
Mimi: Right there, the big red dog? Puppy. The big puppy dog. The big Rose.
Aidan: Rose?!?!?!?! (looks excitedly for Rose)
Mimi: Yes, do you want to meet a big Rose?
Aidan: Yes! Rose!

our turn in line...approaching Clifford

Aidan: Rose! Rose! Rose! (looks up at 6 foot "Rose")
Aidan: No. No Rose.

That kid...he's smart. He knows a Rose when he sees one and he was not happy with this gargantuan impostor.

I still got my picture though.

And since it was still Feeding Tube Awareness Week we did some tube feeding while we were outs and abouts.

I love how many new fun things Aidan gets to see and do with Megan - and I especially love all of the Feeding Tube Awareness she spreads!


Also - for your viewing pleasure - the outtakes...

HOLYCRAPTHAT'SNOTROSE!

Clifford hides from Aidan

Isn't he dainty?

Introducing... MIMI!

Hi! I am Megan. (And I'm Caroline.  You know me from blogs such as this one.)  Caroline and I have spent long hours trying to figure out what words to use to most accurately explain “the situation.” We have failed miserably, multiple times, so bear with me... 

I am Aidan’s nanny. (She is that.)

I am also Aidan’s Mimi and Caroline’s best friend. (That too.)

Perhaps, I should start from the beginning. (Yes, please do!)

A few years ago, Caroline and I met at the local rock climbing gym. Through our mutual love of eating (and rock climbing), we became friends.  (She WOULD say eating first.  I swear, those days, I climbed a little more often and ate a little less often.)  Then one day, my friend Caroline brought home her little bug, Aidan, and I fell in love.  (I hope she means with me!) Over the past two years, Caroline, her husband, and Aidan have made a place for me in their family. I taught Aidan his first funny sound, which turned out to sound surprisingly like he was choking (Sorry, Caroline!!) (Not forgiven yet!). I helped identify his first major food allergy, soy, by feeding Caroline vegetarian “tacos” (Whoopsiedoodle, Caroline!) (Why on EARTH didn't we just use cow?). 

Can you believe this little chubber wubber fell off the growth charts?  Un-possible!  This was THE VERY NIGHT of the soypocalypse!

 I pondered over Aidan’s shocking change in temperament after becoming food-fed alongside Caroline and Tom. I sat through training and supported Caroline and Tom the first time they placed Aidan’s NG tube. I stayed the night in the hospital when our bug needed a few extra days after G-tube surgery. (I wouldn't have survived that hospital stay without her.  Seriously.)

In my own life, I was working as a Senior Product Development Scientist at the same company that hired me straight from college 9 years ago and aware that I needed to make a change because I was not happy. One day, as the story with Aidan and his disorder unfolded and Caroline and her worries about how to keep him safe in daycare when both parents needed to work full-time became clear, on a whim I said, “If it ever came down to it, I would be willing to quit my job and stay home with Aidan while I figure out what I’m doing next.” As soon as I said it, although I was 100% genuine in my offer, I was positive I sounded ridiculous…but here we all are.  (I knew right then I had to take her up on it before she changed her mind, or forgot that she'd offered, or she fell off a cliff or something.  This way would be so much easier than kidnapping.)

Caroline and I have a hard time finding the best words to explain our situation because we are sensitive to folks thinking I’m just the nanny or just a babysitter or that it’s a shame Aidan isn’t in daycare with a real teacher. I am keenly aware of his disorder, intimately aware of how to feed and care for him, and profoundly honored to be such a huge part of his life. He is a wonderful, loving, and intelligent boy whom I can’t imagine loving any more if he were my own son.

(In all seriousness, I feel profoundly lucky to have Megan in our lives.  The ability to go to work secure in the knowledge that my son is as safe and loved as he would be in my own arms is something that most mothers would kill for.  When Megan says she loves him like her own, those aren't just words.  She truly does, and he loves her right back with all of his sweet little heart.  We might be a strange family.  We might be a complicated one.  But we're a happy family, and very lucky to have one another!)

So as Caroline prepares for her new job I am happily decorating the daycare in our basement! (It looks awesome down there!)