We hope that you all will join us for our upcoming eConference: GMOs, Organics and Food Allergies: How To Feed Your Family Without Losing Your Mind on October 7th. Click HERE to register. Those of you who have children with special diets will relate to Prima’s cruise experience!
There used to be a time in my former life (pre-motherhood bliss)when the anticipation of a vacation was almost as exciting as the trip itself and preparation revolved around me, myself and I. I took time to meticulously pack all my cute little sun dresses, with their matching accessories and shoes, select all the books to read between naps, and shop for the latest swimwear and a cartful of tanning products.
All I could think about was partying !!!
Fast forward to my life now and hit the stop button at January 2011, when I agreed (against my best and selfish interest) to go on a family vacation/reunion. Thirty-five family members on a 10 day cruise in the Caribbean. I must have been in a state of temporary insanity because I actually imagined this was going to be a dream vacation. My denial of the reality was further fueled by the strong and stubborn desire to give my son the opportunity to “socialize “, mingle with his cousins and explore new things! Far more than sunbathing and Pina Coladas, this was my dream and I convinced myself that nothing major could possibly go wrong.
If the ship administration agreed to allow me to bring all his food on board, it would be a piece of cake and I was determined to make it work.
And as long as my son was happy, I’d be happy!
As every parent of a child on a special diet knows, if you’re going to do the diet thing, you have to try and stick to it and be as consistent as possible. For this to work on the cruise, I had to bring all his meals, snacks, and what I like to call the “what ifs”. Furthermore, I knew I would have to organize all of his daily supplements: shots, probiotics, enzymes, epsom salts, vitamins, antifungals, activated charcoal, and what I call the “ might as wells”.
I started to hyperventilate when the list reached two, then three, and four single-spaced full pages but when I lost count, I knew I was getting in over my head.
Call me anal if you want, but I was determined to pull this off in an organized manner and not let myself be deterred by everyone’s else opinion that I was insane.
Even the woman in charge of “special accommodations on the ship” thought I was mad. “Oh but you don’t need to bring your own food, we have gluten free meals, ma’am”, she offered politely.
“My son is on the specific carbohydrate diet, which means he will only eat the foods I prepare for him ”, I insisted and left it at that. I wasn’t in the mood to explain the limits of the diet nor give her an Elaine Gottschall lecture on monosaccharides and disaccharides.
“I need to know if you will accommodate me with freezer space so that I can bring all his meals for the 10 days on the ship”, I crossed my fingers and asked.
“All his meals?” She quipped in disbelief.
“Yes, all his meals” I bravely insisted.
I could sense she was biting her tongue not to say: “What’s the point, lady, just do yourself a favor and stay home!” I don’t blame the poor soul for being confused because after all, one of the great perks of vacation is the exemption of kitchen duty, right?
And so, the minute I was given the green light by the ship’s administration, my house turned into a food factory. Pages and more pages of special menu ideas, all scrupulously within the parameters of the diet but also included variety, and a high level of originality. I didn’t want my son to feel that he was different from his cousins. He would have to be served with them, at the same lunch and dinner tables, and while I anticipated they would be indulging in yummy desserts and decadent snacks practically around the clock at the infinite buffets on the ship, I didn’t want him to feel left out of anything.
I needed absolutely to make 12 breakfasts, 12 lunches, 12 dinners (again the extra 2 for the “what ifs” and the “might as wells”), and, of course what seemed like gazillion snacks. To my husband’s great despair (I’m sure there were time he wanted to strangle me), I became obsessed with ordering the latest dehydrators to make fruits roll ups and homemade chips. I was constantly searching for the latest SCD legal pancakes recipes. I put together a schedule for the cruise people to follow and a calendar, (yes, a calendar) so that each day, for each and every meal the properly labeled ( description included on the label ) menu would be defrosted, heated and served to my son.
I wrote, scribbled, erased, rearranged, washed, peeled, cooked, and packaged for days and nights but I was pleased with my efforts. This was going to work.
Did I mention I was exhausted?
Let’s just say that by the time I was ready to leave, I had lost 5 lbs, I looked as if a truck ran over me over and I knew (but was too wiped to care) that I had forgotten half of my personal things.
Who has time to think about shoes and little sun dresses when you’ve got a cooler, a travel pharmacy to prepare and 2 kids to tend to? Besides, my priority was my son’s enjoyment and that trumped my own. Now that I had organized everything, I felt good and confident and the feeling was amazing.
But that changed the moment we boarded, because as luck would have it, anything that could possibly go wrong, did!
As soon as we arrived on board, everyone else ran to fun activities and I bee-lined to the kitchen. There, I was politely informed that the ship was not allowed to keep my “special” food in their freezers but they would be happy to accommodate me by supplying ice throughout the day to refill the cooler.
I was happy they were happy to do that, but I was not happy at all.
I glared at my husband. Thank G.d I had convinced him to book a room with a bathtub and I wanted recognition for my good sense because that became our improvised fridge. I will spare you the details of how we showered in between ice cubes during those 10 days, and how my days revolved around keeping the food frozen!
And as if this was not enough stress, both my son and daughter caught the stomach bug, a nasty virus that spread quickly around the ship, and after that was cleared up, a double ear infection (for my son) and a sinus infection (for my daughter). At that point and not a moment too soon because I was battling murderous thoughts, my husband saved his ass by mumbling something that sounded like gratitude or a blessing (I wasn’t really listening) for all the medications he thought I was insane for packing and for all the times he rolled his eyes at me.
Our room looked an infirmary, and it was a full time job for me (not the housekeeping service!) to manage strollers, bags, meds, food and all the paraphernalia. My only enjoyment was to watch, on the brief moments I emerged from my room, the other family members actually enjoy the cruise and then I crawled back, physically and morally exhausted.
My recovery was very long and painful.
On the other hand, I did learn a few precious tricks:
Plan ahead (I did that, but I mean really plan ahead)
You already know that you need to pack lunches and snacks and juices, perhaps supplements and probiotics and activated charcoal. NEVER FORGET THE ACTIVATED CHARCOAL. You need to think about what will keep your sanity in the inevitable moments of travel stress. Whatever it takes, puzzles, movies, ipad, favorite toys. Bring them! Bring as much as you can.
Pack food (I did that too, but stressed the whole time there might not be enough)
If your child has to be on a very specific diet, or has feeding issues, go ahead and pack all of it, make sure to bring some familiar foods. There is nothing wrong with bringing your own home made fruit roll up or favorite cookies.
Save your breath ( and your strength)
This is one of those times where other people are going to think you’re obnoxious and catering to your child’s whims instead of forcing them to experience new things and try new foods. Learn to ignore them; you don’t have to explain. They’re not the ones who will have to put your stressed/rashy/ hungry/constipated child to bed at night so don’t ever feel you have to justify yourself.
People who tell you to “pack light” clearly have no idea what they’re talking about and most likely do not have small children. The thing to do is try to pack smart so that you don’t end up folded over in excruciating pain, dragging your sore body and five duffel bags from one place to the next.
Accept the sleep situation (not yours, cuz you ain’t going to sleep!)
Routine is the key word
Your schedule will be all messed up but your routine doesn’t have to be. Try to keep the same routine you are used to at home. Even if the bedtime is pushed back to 10:30pm, read that story, make the deep pressure massage, brush the teeth. Whatever the routine, don’t try to short cut it, you’ll be banging your head against the wall at midnight having to deal with cranky kids who can’t sleep because it’s all wrong.
Check your bags
If you’re flying, you’re going to have to check some bags. Your days of flouncing off the plane and past the baggage conveyor are over. And then, there’s that suitcase full of coconut butter. Airport security agents will rip you apart if you attempt to pass that as a carry-on, and G.d knows we don’t want to piss them off.
Secondly, even if you manage to jam your family’s stuff into a carry-on (wishful thinking), it’s going to be the heaviest damn carry-on evah. I make my husband carry all the cabin baggage and the heavy cooler, and it’s his responsibility to chase my son around the airport. Call me a bitch, I don’t care. It’s tough shit but hey, I sweated it out in the kitchen and with the packing. His turn now!
Bring all the available documentation
Bring the original bottles of all prescription meds. Bring a letter from your doctor stating that your child has autism, and/or a list of your child’s allergies and special needs. Whip it out to shut the traps of those giving you a hard time about pre-boarding or being allowed to bring your own food into restaurants.
Lower your expectations
Don’t expect to have the same kind of fun as everyone else. You don’t have the same lifestyle. Just remember that trips and vacations are supposed to be about making memories. Create your own, and don’t worry if they’re not perfect. No one’s life is perfect and focus on the funny things that happen during your trip. Those are the best memories anyway.
Stand out and be proud
Believe it or not, having the largest stock of meds on board, I became the family’s supplier, a.k.a. “the dealer” on the ship, providing activated charcoal and other homeopathic remedies to relieve the stomach virus and other minor ailments.
Looking back, I know now it was worth every single effort because it wasn’t in vain. In my son’s mind, memories were created. And to this day he still takes about that trip and asks if we can go again on the “big boat”.
And just for that, I’d do it again in a heart’s beat. ♥
For more posts by Prima, please click here.
Waited 5 yrs to take our first fam vaca together. I was terrified. The amount of work that needed to be done in preparation kept my anxiety sky high & we put it off for so long. I knew at 3 & 4yo my son wouldn’t make it(I wouldn’t either lol) but around 5 he started to make breakthroughs & life in general got much easier. Last summer we made the big step&drove5hrs from LV to palm springs. He surprised me every step of the way. He loved the car ride thru the Mohave desert, loved seeing new locations, trying new restaurants,he was overanxious w excitement & a Lil bit hyper but hey I’ll take that over the other kind of anxious. He even dealt w the 118 degrees well. We were not satisfied w the timeshare (by the way w feeding sml kids&esp w special diets, timeshares w kitchens r the way2go!!! NOT hotels!!!Like home away frm home) the place was not as nice as pictured & service sucked. And the pools were so old & run down. I was so pissed…but u know what, my son was so happy thru it all, he made the best out of it, never complained & showed me that I had to suck it up & try to make the week as enjoyable as possible. Both my boys were so wonderful, showed such an appreciation for life and the little things we normally overlook. For ex) when we got to a place we planned on doing go-karts at, the sign before entering said “caution:the environment in this area contains exhaust&fumes known to cause cancer!!!” R u kidding me? A biomedical autism recovery mom letting her finally healthy kid sit in cancer karts?? I don’t think so! My boys understood our explanation completely & didn’t peep a whine. We wound up going to freakin Walgreens lettin them pick their fave figurines, then goin to smiths to buy some ice cream! Things we coulda did at home! But, they were thrilled anyway, just to be together as a family doing something special in a new exciting location! And I was so glad I pushed myself to deal w all the hard work & apprehension in order to make family memories:)
Check out vacation packages with Autism on the Seas! They can accommodate special diets and other special considerations. http://www.autismontheseas.com/
I recalled your story to my husbands family while we were visiting. Yes, they think I’m a nut case with the food etc. I was trying to show them that this stuff is normal for our kinds of family, but I don’t think it worked. Now they just think we are all nuts! Oh well.
Prima, just reading this made me start to hyperventilate. Traveling with kids with special needs is SO MUCH WORK!!! And so hard to explain to people that neither understand nor care. My kids keep asking to fly cross-country to see their grandparents – a minimum of 3 planes and 12 hours. I just haven’t been able to make myself do it again yet. Thank you for reminding me that 1) it really is that hard, and 2) life is hard – get over it and make some memories. Beautiful blog from a strong, smart Mommy.
I alternated between laughing and crying reading this! We went through similar trials and tribulations when we booked our dream cruise a year and a half in advance and 6 months before we left our son was diagnosed with Autism. It was tough, especially in the throes of biomed, but we did manage to get through it and have fun. We just had to roll with it, and coming from a control freak that is a HUGE adjustment! We are so poor now from treatments that we won’t have to worry about vacations for a long time. LOL
Just wanted to add that we went on a cruise too and my child caught a bug from it. I think this is VERY common!
We bought a decades old RV so that we could literally pack the kitchen sink! We tried to fly last year but the kiddo had so much anxiety just over the social story that the plan was scrapped. If we can’t drive there, we’re not going there (at least for the next few years).
Traveling is so stressful – the one thing I have to remember to bring is patience (with myself, my husband, my child and any other poor soul that happens to come across my path).
Amy…load em up and get on over here to Montana! I’ll tell you some stories about some of the poor souls that have crossed our paths in airports. The RV is VERY smart. 🙂
I’m waiting to win the lottery so I can lease a private plane and bypass all that TSA and general public stuff 🙂
The BEST part of the RV is the kiddo can pee any time he needs to. No fussing over putting shoes back on, no trying to sneak in and out of a fast food joint without tantrums about french fries (we’re on the GAPS diet) and quite frankly, he gets a bit of a thrill out of peeing while we’re moving down the road. Granted in the west, you can pull over practically anywhere and take care of business on the side of the road – but that is NOT the sort of behavior I like to encourage with my “oh-so-smart-but-still-very perseverative-one”.
I’ll give you a shout out when we point our RV east 🙂
There is a cruise line that says they will cater to children with Autism. They are called Autism on the Seas. http://www.autismontheseas.com I haven’t been on one. I believe they will do gluten and casein free, but I don’t know if they do the specific carbohydrate diet or organic food. I would think if more and more parents need to do this for their children the cruise line would eventually accomodate. Right now they are having an essay contest, “I need a special vacation.” They will be awarding 32 free cruises.
My daughter and I have been staying with my in laws this summer out of state. My husband has come a few times and the plan was for him to come up and we would all fly back home. Change of plans now he has to travel for business. I freaked out wondering how I could possibly fly back with my daughter. I called the airline and explained the situation. They asked if anyone was escorting us on our departure/arrival I said yes they took the names of people escorting us and they were issued a pass which allows them to go through security. In addition, they will try their best to put us in front seats (wheelchair and working dogs are first priority) so my daughter doesn’t spend three hours kicking the seat in front of her. I’ve got her jog stroller which is a tad too small but I’ll make it work and her leash plus special food a change of clothes wipes iPad supplements and an oath to remain calm.
Yes!!! you can always ask for that when you register at the airport. Especially if you show them a doctor’s note, they will give you priority to enter the aircraft and exit too. It does help a lot with anxiety. I know my son does not like to wait so it helps him tremendously 🙂
I am currently on vacation and packed my entire kitchen (minus the sink). We have been gone for 7 days and everyday my son has cried that he wants to go to his house and isn’t sleeping. Vacations used to be fun… now it’s just torture.
Oh I am so sorry Melissa. Is there anything that you know he really enjoys at home? perhaps you could recreate that “activity” or “moment” with him while away? I know it helps a lot here. when away, I also try to recreate (as much as i can) our routine at home, and i have a schedule ready everyday to prepare him for the day. all these help a lot reduce his anxiety. I hope this helps a little…