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Get Organized Before You Start

Living in continual chaos is exhausting, frightening. The catch is that it’s also very addictive.
Lorna Luft

Uh-oh, the little people were in charge.

I stood over the stove in our cramped, crowded laundry room, cooking a quick meal while trying to keep an ear out for the boys. Evan, seven years old, was playing under and around my feet, “helping” me get lunch on the table.

During our big remodel in 2002, the makeshift kitchen—with appliances squeezed into the eight-foot by eleven-foot laundry room—was a nightmare. To keep the fun going, what was supposed to be an eight-week project ended up taking eight months.

A pair of dirty underwear plopped down the clothes chute onto my head. I yanked it off and kept trying to cook three things at once.

Without warning, a five-pound sack of flour shot out of Evan’s hands and exploded on the floor, blanketing the limited floor space. Plumes of flour hung in the air like smoke after a bomb goes off.

I sprinted into the hallway to get something to clean it up and ran into my two-year-old strolling out of the bathroom with a can from the recycling bin in his hand.

“I’m swiggin’ a beer!” he crowed.

“Where’d you get the ‘beer’?” I asked, pausing briefly. He pointed to the open toilet. It had pee in it that someone hadn’t flushed.

“Yuck! Dump it out!” I yelled, dashing away to get the dustpan and broom. When I returned to the five-pound sea of flour, Eli had poured the pee water all over it. Yes, a very funny story now, but not so much at the time. The chaos in our home was at a crazy-maker level. I spent entire days battling catastrophes.

One of the biggest obstacles to managing health and maintaining a multitude of therapies for the autistic child is the staggering amount of unpredictability in the autism household. That chaos creates a dysfunctional environment that can sabotage even the most Herculean efforts of the most extraordinarily dedicated parents. Missed appointments, clutter, messy piles of papers, exhaustion, and frustration become the hallmarks of what is truly a vicious cycle—until you banish the “chaos monkey,” that is.

Autism parents eat, sleep, and breathe the daily details of the medical challenges and therapies for their child, often to the point of tunnel vision. This chapter brings you the structure and organization you long for but haven’t had the time or wherewithal to figure out—a change that will also mean other parts of your family and adult life can come back into focus.

There is such a range of chaos in autism homes that I’ve included suggestions for all scenarios, from mild to wild. Do you have a naturally organized, calm, and neat son or daughter? Just move on to the next suggestion or chapter if this scenario doesn’t apply to you. Do you have a child with no impulse control or with destructive tendencies? If your children are dedicated agents of chaos, many of these suggestions will be helpful. Keeping family life organized is waaay more difficult when the child lacks internal structure and impulse control. You will have to be the external frontal lobe until those skills can be learned. This chapter shows you how to free up your time to focus your amazing “Autism Parent Super Powers” on getting your child feeling better. Although our lives as autism parents are not easy, there is joy in the journey as we see our amazing children blossom and become able to use the tools that make for a happier, healthier life.

Some of these tips will save you time and money; some of them will save you time but not money. There were times I had to resort to spending a little more to have something delivered to my door because a short trip across town was out of the question—and many of you know what I mean!

Get the Medical/Therapy Plan Under Control

Are you tired of spending precious time madly searching through drawers and piles of miscellaneous papers looking for a form or document you desperately needed, like, yesterday? How many times have you showed up for an appointment with a doctor, therapist, or teacher and realized you were missing most of the paperwork? Can’t remember why your child is taking a certain supplement? Ashamed because you used to be very organized before you had children and now you never know where any important papers are?

I’ve collected and refined tips and checklists over twenty years of living with autism—at home and in my clinic. I share my best hacks and help you create an organizer that suits your needs and personality. You need to manage the mess of records that have come swirling into your life, creating a mental “whiteout” and obliterating any sense of direction. Notes from doctors and teachers, business cards, appointment slips, prescription refill orders, supplement lists, protocol schedules—it’s a must-do step to get it all under control so that you can concentrate on steps to improve your child’s health and language and skills.

This binder can easily be carted along to any doctor appointments or Individualized Education Plan (IEP) meetings. I love it when a mom or dad pulls out a large, organized binder during a visit to my office! Your organizer will come in handy when going over a history with a new doctor or sharing information with another parent of a newly diagnosed child. Sometimes it’s nice to flip back through the notes and realize just how much progress your child has made.

There is nothing complicated or fancy about this system. In fact, I’ve found that really elaborate systems end up abandoned by the side of the trail, so simpler is better. Ultimately, your binder is a powerful tool that allows you to manage your child’s customized Action Plan. But it’s more than that. I encourage you to fill it with photos and personal notes as well. It’s okay to write in the margins and even to laugh at what it sometimes takes to get through the day with an autistic child. Instead of the usual loneliness and isolation autism parents face, I want you to start the journey to vibrant health on the spectrum with a friendly, experienced autism mom and clinician walking beside you. Someone who has made all the mistakes, figured out what works, and marked the trail with signposts.

Create an Organizer

Over the years, I’ve seen a number of different notebooks and organizing systems used by autism families. Most families didn’t have any system at all.

Therapies, appointments, prescriptions, school schedules, IEPs, and the like usually form a crazy quilt of autism life that is not very cohesive, as each professional designs a therapy or prescribes a medication within the scope of their training and practice. Many treatments, whether medical or educational, work for subsets of children with autism, and it is up to skilled and intuitive parents and clinicians to figure out which ones are beneficial. If records are kept and observant parents and doctors continuously choose to “keep what works and ditch the rest,” then a custom Action Plan develops for the child.

And that’s nearly impossible when records and notes are hopelessly scattered and lost.

At the time of publication of this book, new apps for smartphones and tablets were either coming onto the market or in beta mode to help with this chore. You can try one of the new apps, like Birdhouse for Autism (see Week 18 in the Chapter 9 Online Action Plan), for example. Whether or not you use an app, I still recommend creating a binder for office visits. It will be much easier for your child’s clinicians and therapists to review than scrolling through electronic screens.

You’ll never get rid of all the chaos—that’s not our goal—but you can throw a saddle on that monkey and ride like hell! Don’t put off creating your organizer until you have time to go to the office supply store; it’ll never happen. There were weeks at a time that I couldn’t get away to do any shopping. Instead, go online and order what you need today and have it delivered to your door ASAP.

Here is a simple binder system that has everything you need and nothing that you don’t. I can remember the “ahh” feeling after creating Evan’s first journal. I felt like I had reclaimed some semblance of control over the chaos. Like everything else about this book, I’ve pared it down to the most basic necessities so that you can get back to doing what you do best—creating the best life possible for your child with autism. This binder system can be laid out in different ways, and you should keep it as simple and straightforward as possible, but here’s what works for me and what you need to get started:

1) A heavy-duty three-ring binder. Get the kind with a D-ring that allows papers to lie flat. If you get a binder with a clear plastic cover, you can slip a photo of your child underneath so that he is the star of your journal.

2) Three-hole punch. Alternatively, you could use plastic sheet protectors that you can insert papers into.

3) Tabbed subject dividers with pockets. Quick tip: You can temporarily stash any loose papers gathered at an appointment in the pocket for that therapist or doctor. When you get home, hole punch everything and put the papers in the notebook if applicable.

4) Appointment cards.Place a specialized plastic sheet created to hold business cards at the front of the binder to hold all appointment cards. These are available at office supply stores.

5) Business cards.Use another business card sheet holder in the back of the binder. Keep business cards handy for every professional on your child’s team.

6) Calendar option.Alternatively, some parents insert a three-hole-punched monthly calendar and mark appointments on it; then they can see all appointments for the month at a glance. Quick tip: No matter which style you choose—appointment cards or monthly calendar— create a calendar alert on your smartphone if you have one. Set an alert for a day or two in advance of each appointment, and a second alert for two hours before each appointment.

7) Use the tabbed pocket dividers to create sections for:

Physicians. Have a section for each doctor your child sees. Keep records of any diagnosis, treatment plans, correspondence, and reports.

Therapists. Again, have a section for each therapist your child sees. Keep records of any diagnosis, treatment plans, correspondence, and reports.

School. Keep a record of only the latest school testing, IEP and goals, orders for special diets, and pertinent notes written by teachers. Note: If the school section is substantial, create a separate binder for educational records.

Legal Papers. Proof of guardianship, foster care, adoption, court orders all go here. You will need these documents the first time you visit any professional.

Medical Releases. Notes from parents are essential for giving permission to other family members or caregivers to take the child to appointments.

Insurance Information. Include copies of Medicare or Medicaid coverage here, too.

Allergies. List all allergies, sensitivities, and intolerances here, including foods, pets, grasses and trees, mold, medications, and supplements.

Lab Testing. If you’re a “lumper,” just insert lab results as they come in and you will have them in rough chronological order. If you’re a “splitter” and have more time, you can create sections for Blood tests, Stool, Urine, or Genetic testing, for example.

Psychiatric Testing. Include reports from comprehensive psychological testing and any testing done by the school.

Vaccination Records. Note any adverse reactions or allergies to vaccine ingredients here. Don’t know what to do about the current vaccine controversy? Want to vaccinate your child but minimize risk? Some parents follow an alternate vaccine schedule that allows their child to be vaccinated, but on a more spaced-out schedule, one vaccine at a time, just in case their child is in a minority subset of children who seem to be sensitive to some vaccines. A great website to explore your vaccination schedule options is www.askdrsears.com.

Procedures. List all surgeries here, such as tonsillectomies, tubes in the ears, etc.

Photos. Photos of before, during, and after treatment. This is very important. You will be encouraged by how much healthier and advanced your child has become. Videos are invaluable, especially after your child improves so much that your doctor may try to claim “it really wasn’t autism to begin with.” Some doctors are only just learning that certain aspects of autism respond positively to appropriate health support, and your photos and videos will help back that up.

Journaling and Observations. Here is one organized place to keep daily journal notes, a food diary, and observations, which are very important throughout the course of any treatment or intervention.

List of Emergency Contacts.

8) Create a Medication and Supplement Section:

Prescription Medication Information.

Drug Inserts. Who has time to create a detailed list of medications, their side effects, and other information? When you fill a prescription, save the drug insert that explains the drug’s effects and side effects. Put the printed drug insert into a clear plastic sheet protector and put it into this section of your binder. It has all the information you need on a drug. Write the date started and why at the top of the page.

Causes and Symptoms. Think about it. Is this medication a temporary bandage? Does it suppress a symptom or address the root cause of a symptom? For example, reflux is a symptom of GI dysfunction, so your approach should address the GI dysfunction, not just the reflux itself.

Dosage and Duration. Ask yourself: How long should my child take this medication? Have a plan. If a medication is increased due to a specific episode (e.g., a temporary episode of anxiety), when should it be lowered again? Or is it a permanent increase in dose and why? Some doctors will increase the dose for a bout of anxiety but not have a plan to lower it after the temporary situational stress goes away.

Over-the-Counter Supplement Information. Create a section for information on natural and over-the-counter (OTC) supplements. They don’t come with drug inserts like prescriptions do, but you can go to WebMD.com and print out information on them. Some OTC products can interact with prescription medications or even other natural supplements and herbs. Always tell your pharmacist and doctor about all over-the-counter supplements. Better yet, bring the bottles to your office visit.

Master Medication/Supplement Schedule. Create a log of medications and supplements that your child takes daily, as in Figure 2-1. Create a new updated log any time there are changes.

The “Ditch.” I like to keep records of medications, supplements, and therapies that have been tried and discontinued, because knowing what didn’t work provides insight into your child’s health challenges. Jot down any negative or paradoxical reactions to medications and supplements here, as well as when you tried something and there was simply no benefit or improvement observed.

Discontinued Medications. If your child stops a medication for any reason, pull out the drug insert, write down the date and any notes explaining why it was dropped from your child’s regimen, and put it here in the ditch.

Figure 2-1

All righty, papers and records are organized and you should now be in better shape to track the total medical, therapeutic, and school plan for your son or daughter. Let’s take it a bit further and free up some time, while restoring peace and order to your home.

Take Back Control

I think frankly when it comes to chaos you ain’t seen nothing yet.
Nigel Farage

First things first. If your child is a wanderer, or uncontrollably destructive around the house, and leaves no drawer, closet, or shelf unmolested, you will need to go into lockdown mode. Put locks on doors, use child gates, purchase a locking metal cabinet for papers and photos if you have to. Sometimes most of our day is spent two steps behind a very active child, making sure he doesn’t get hurt or cleaning up some crazy mess he has made. Step one: Stop this madness and take control of your home. See if any of these ideas can help your situation:

Safety Fencing. Install fencing about four to six feet high around your yard with gates that you can lock.

Put a Lid on It. Install a locking key-coded cover on the swimming pool or hot tub. Water is the first place they go when they dash off.

Sound Alerts. Install a system that will chime when a door or window in your home is opened. I don’t mean an alarm that will sound like a burglar has invaded, just a clear signal that lets you know your child may be getting out.

Tracking Technology. Quickly locate a child who has wandered. See Week 22 in the Chapter 9 Online Action Plan for ideas on GPS bracelets, clothing, and tracking apps.

Extra House Keys. Avoid getting locked out of your own home. It’s really scary when a young child is inside who can’t or won’t cooperate to unlock the door. Keep an extra key at your office and a neighbor’s house, or use a key-code pad on one door. You might even use a key-code lockbox with a key inside—it works for realtors!

Open Sesame. A new app called Open Sesame will allow you to unlock the door to your home using your smartphone.

Within Your Sight. If your child is destructive to his room when put there for a time-out, install a peephole looking into the room so that you can monitor your child’s safety. We did this with one of our children, and when he gained self-control and matured a bit, he asked if we would switch doors with him. The inside of his bedroom door had been kicked to pieces, and it served as an embarrassing reminder of his former behavior. We complied and forgot about it. Months later we noticed our builder’s crew whispering and giving us odd looks after working on a renovation in our master bedroom. We’d forgotten that our door looked like a wild animal had clawed away the bottom of it, plus it had a peephole looking in. No wonder they were talking!

Safety Glass. Cover windows with clear packing tape if your child likes to hit them with his hands or tends to throw things at them. It won’t keep the glass from breaking, but it will keep it from scattering and leaving dangerous shards.

High Access Locks. Install slide bolts near the tops of doors if your child is an escape artist, or if you need to control access to certain rooms.

Dutch Style. A split door where you can lock the bottom half, while leaving the top half open to keep an ear on everyone, works especially well with younger children.

Upper Limits. If your child is especially destructive with your papers and records, install a high shelf along the top of the wall to keep these things out of the reach of a younger child.

Child Locks. Install a childproof lock on the refrigerator and cabinets if your child eats inappropriate things (like uncooked meat), eats too much (resulting in medically concerning weight gain), or eats foods that are banned on his special diet, or if he just likes to paint your kitchen with all the condiments from time to time.

Wall Busters. I have had parents tell me that they cannot keep anything out of the reach of their child because he could kick in a door, tear out door frames, and break through drywall. Now, those are extreme cases, but here are a few tips:

No hollow doors—use metal or solid wood doors.

Replace the access to at least one room with a metal frame and door, and use that room to store your papers and records.

Brilliant hack—when repairing large holes your child has made in the walls, fill the interior of the wall space with wooden two-by-fours turned on edge and nailed in place to form a solid fill before covering with drywall. This makes it extremely difficult (and painful) to kick in the next time.

Safety Tips I’ve Collected

Get an anti-tip kit for the kitchen stove. Contact the manufacturer of your appliance and order one if your child pulls down the oven door and uses it to climb. Several hundred children a year die after tipping the stove over and getting crushed.

Prevent drowning. Put a child lock on the toilet.

Hide the knife block!

To nail shut the window in his bedroom or not? Now that’s an icky decision to make! If you’ve ever found your child out on the roof of your home, it makes that decision easier. Our son was quite adventurous. We’d put him in his room for a time-out and find him on the roof (“just wondered what it was like out here,” he’d say). Once he even jumped off into the flower garden below and then rang the doorbell.

Notify the 911 Call Center if your child is nonverbal or intellectually disabled and may not be able to respond during an emergency.

Stick a decal on your child’s bedroom window and your car window to alert emergency personnel that your child is nonverbal and may not respond in a typical manner. (Products are available at www.MagnetAmerica.com.)

Get Time Management Under Control

There are so many schedule/calendar tools available these days, it really makes me jealous. Let’s review your many options.

Visual Thinkers

Hang a huge calendar and bulletin board on the wall and keep the whole family’s schedule and notes available at a glance.

Smartphones (Your Best Tool)

Use your phone as your executive secretary, setting reminders for everything.

Create prescription refill alerts. Set a phone alert for two weeks ahead to contact the doctor for a refill (some doctors take a long time to get hold of, even to get the refill).

Set up your email and banking on your phone. I attend to these tasks in what would otherwise be wasted time in the doctor’s waiting room or in line at the grocery store.

Never get lost again! The newest models of smartphones can work as navigation systems, calling out turn-by-turn directions as you drive.

Never forget where you parked again. Take a photo of your parking space at the mall or airport.

Use your smartphone to take photos of your child’s rashes or to video behaviors to show the therapist or doctor.

Now if they’d only invent an app to take down the Christmas tree!

Personal record for taking down the Christmas tree: April 10!

Guard Your Time

No guilt—use caller ID so that you can screen pointless calls or avoid long rambling ones.

Respond via email instead of texting or phone calls. This way you can correspond when it’s convenient for you, even if it’s the middle of the night when you’re up with a sleepless child.

Shop Online

Online shopping is a great timesaver.

For security purposes, use PayPal, or designate only one credit card for online ordering. It should not be connected to your bank account.

No autoship—for anything. Although it seems like a good idea at first, if you cannot regularly use up the item (e.g., coffee, skin care products, vitamins, or whatever) it will just pile up and ultimately cause you more stress and expense. Autoship was always a disaster for me.

Bill Paying

Make online payments. I love paying online because I can do it day or night when it’s convenient for me.

Pay ahead. Pay utility bills quarterly or even a year at a time if the budget allows (e.g., trash pickup, water, sewer). This gets rid of a million annoying little bills every month and frees up your time.

Set up ACH payments. Pay as many bills as you can via Automated Clearing House services, which are automatic withdrawals from your checking account. Set up an ACH payment for your credit cards that will pay the minimum monthly payment due every month and avoid those late fees. You can always go online later and either pay it off in full or at least make a bigger payment.

Junk Mail and Spam

Back in the early chaotic days, I was overwhelmed by the sheer amount of mail and email I was receiving, most of it unwanted.

To reduce spam in your inbox, register for the Email Preference Service at www.dmachoice.org.

Favorite email hack—have a junk email account for online ordering. Even reputable online companies always start sending junk emails right away, even if you uncheck the box before ordering. That is why I have one email address that I use solely for online ordering. Those junk emails never clog up my real email account, because I always protect that address from spam.

Reduce junk mail, including:

Eliminate catalog chaos. One drawback to using online shopping is that your name will end up on countless junk mail lists and will even get sold and rented out to other catalog companies. Cut off the back cover of the catalog and mail it back to the company with a note to remove your name from all mail and marketing lists, and to not share, sell, or rent your name. It will take two or three months, but your junk mail load will decrease dramatically, making mail more manageable.

Register at www.dmachoice.org for the DirectMail.com National Do Not Mail List. It’s free and lasts for six years.

Reduce telemarketing calls (doesn’t apply to charities):

Get off their radar by calling 1-888-382-1222 from the phone number you want to register.

Go online at www.donotcall.gov and sign up for the National Do Not Call list.

Stop the prescreened credit card and insurance offers:

To opt out for five years, call toll-free 1-888-5-OPT-OUT (1-888-567-8688) or visit www.optoutprescreen.com.

To opt out permanently, go to www.optoutprescreen.com and make your request. You will be given a Permanent Opt-Out Election form to sign and return.

Get the House Under Control

Chaos was the law of nature; Order was the dream of man.
Henry Adams

Organize the home—but first simplify. I always tried to organize and containerize all of our stuff, but true progress was made only after I learned to simplify and get rid of stuff. Here are my best tips and resources for giving your junk the heave-ho.

Simplifying

FlyLady. If I had to pick only one system to get organized, it would be this one—and it’s free. Go to Flylady.net and start your journey back to sanity today. FlyLady gets us. She starts you out with a Baby-Steps program and within two to three months you will be sane and organized.

How to Simplify Your Life by Elaine St. James. This resource gave me that lightbulb moment when I realized less is more . . . .

Organizing from the Inside Out by Julie Morgenstern. This book explores why we hang onto our clutter, and gives you permission to let it go.

Organizing

Pinterest. It’s porn for organizing, with lots of great ideas. Pin while you pee if you have to. Check out our organizing and other ideas on the Autism Health! boards.

Favorite Tip. Set nothing on the floor. I was struck by this beacon of sanity after seeing a demonstration of a closet organizing system that kept the floor space empty and pristine. It looks great and makes cleaning a snap. Have you noticed that once you set something on the floor, it attracts other homeless objects like a magnet? Soon there is a growing blob of stuff next to it, and then you begin to set stuff on top of it. It grows like an alien egg sac!

Basket Case:

Containerize. Group things in bins and baskets; you don’t have to organize each item, just group them together. (The look on my face when I’m at The Container Store says it all—a trip there is better than sex!)

Put baskets by the front door (to hold shoes), on the stairs (to make carrying items up and down easier), in the garage, and in the closets of bathrooms and bedrooms.

Plan Ahead. Use weekly pill cups and organizers and make up a week or two of supplements for your child at a time. There are all shapes and sizes available on the Internet or at your local pharmacy.

Label It. Here’s a story of when a labeler would have come in handy: One of our beloved guinea pigs passed away during a bitter winter, and it was impossible to have a burial ceremony. We wrapped him up and placed him in the freezer for a spring burial. Of course, we forgot about him, and months later I had a nasty surprise when I was rummaging through the freezer for last-minute dinner ideas. Label everything.

Have Only One Scary Room. If you’re doing your best, but your house is still cluttered, sacrifice one room and stick all the clutter in there. I know that’s not advice you’re going to find anywhere else, but sometimes ya gotta do what ya gotta do!

Hoarder Patrol. Obsessive–compulsive disorder (OCD) and anxiety are more common in those on the spectrum, and hoarding can show up in that category. Some children are “collectors” and end up acquiring lots of items that feed their area of intense interest: LEGO kits, stuffed animals, toothpaste, plants, vacuum cleaners, radios, toys, etc. I include pets in this category, too. Even though it is difficult, set boundaries on collecting and hoarding and curate the collection on a regular basis. Your child can learn self-control and discipline, and, who knows, these areas of interest may even become a profession someday.

Best School Hack Ever

Beg, borrow, or buy an extra set of your child’s textbooks each year. One set is kept at school and one set is kept at home. This eliminates that quagmire at the end of each day, when your child spreads out everything from his desk, locker, and book bag all over the floor and tries to decide which books to bring home. It eliminates those panicky days when you are phoning friends to get screenshots of assignments in books that were forgotten at school.

Wardrobe

Wear a “uniform” if you’re overwhelmed; choose a neutral such as black, brown, or taupe plus a complementary color, and buy all of your clothes in those two colors.

Make getting dressed a snap. Find a flattering and comfortable pair of pants or a skirt in a basic color, and buy four or five of them. Ladies, don’t fall into the trap of wearing mom jeans! Wear the same basic pants, boots, or shoes each day and just pair them with a different pretty top for a quick outfit that looks and feels great. Guys can put together a quick go-to outfit by pairing the basic khaki pant with different colors of the basic polo shirt. For a neater look, tuck in the shirt, add a belt and you are good to go!

Really pinched for time? Make your whole wardrobe one color such as black or taupe, and wear a few different vests or cardigans. Ladies could add a variety of scarves tied in a variety of ways every day.

Go for clothing that you can toss in the washer and dryer.

Keep changes of clothing for your child in the car, at school, and at daycare. This will reduce unnecessary trips back to the house when accidents happen. I can remember being on a field trip to a children’s museum. Every child on the trip got soaking wet playing with a delightful interactive water exhibit. I was the only mom who had an extra school uniform handy.

Laundry Room

Best Thing Ever—vertical stacking laundry bins. Use a vertical stacking system such as Stack’n Sort by Rubbermaid to free up a ton of space in your laundry room. Label each one with the type of load it will be, such as Towels, Darks, or Lights. This is a great teaching tool for children, as they can bring down their dirty clothes and sort them into the baskets. When the basket is full, it goes right into the washer.

Sock Police. Use plastic clips or safety pins to keep socks together.

Better Yet . . . buy all socks alike so that no matching is needed.

Ditch the Iron. Use a steamer to get rid of wrinkles. Buying tip: Only a commercial-quality steamer will get the job done.

Color-Coded Hangers and Baskets. Children can learn life skills and help with the laundry chores if you use color-coded hangers and baskets for each family member. Keep the baskets on a shelf (remember, nothing on the floor).

Make a Stash

Party Stash. Did you ever skip a party because you didn’t have time to get a gift? No more surprise parties—stock a few age-appropriate gifts, gift bags, bows, and cards for when your child gets invited to a party.

Power Outage Stash. What is important to your child that you must have, even during a power outage? For many of us, it’s extra battery-charging packs for portable DVD players, iPads, and cell phones. Solar chargers may do in a pinch, but are a little iffier. Stash a few of your child’s favorite snacks and drinks, too. Sometimes I bought a movie or game he hadn’t seen before to catch his interest during trying times.

Supplements for Sleepovers

For those times when your child is staying at Grandma and Grandpa’s or at the ex’s house or is invited to a sleepover, here is a great tip for staying organized with the supplement schedule. I call them Travel Boards or Overnight Boards, and they make it easy for others to remember your child’s supplements and medications. They are large rectangles or squares of sturdy cardboard, at least one foot by one foot in size. Enzymes and supplements are sorted into snack-size plastic bags for each anticipated meal or snack and stapled in vertical chronological order to the cardboard (see Figure 2-2).

Figure 2-2

Let’s use an example of your child staying at Grandma’s house on Friday night and coming home Saturday evening after dinner:

 

1. Start at the bottom left-hand side of the board and staple the plastic bag with the supplements (for example, enzymes and a probiotic) for Saturday’s evening meal.

2. Right above it and a little higher on the board, overlapping it slightly, staple the bag with the enzymes for the Saturday afternoon snack.

3. Next, a little higher above that one, staple the bag with enzymes for Saturday’s lunch.

4. Next up, any enzymes or meds for Saturday’s breakfast.

5. We continue to work backward time-wise and attach the bag with Friday’s bedtime pills above the previous one.

6. The very top bag is the one with enzymes and a probiotic for Friday’s evening meal.

As you can see, the very top bag is the one that will be grabbed first at dinner on Friday evening, leaving Friday’s bedtime bag in plain sight as a reminder. You can send more than one board for longer stays.

Here are the benefits of using these Travel/Overnight Boards:

They are hard to lose or overlook because of their size (obnoxious, really!).

They are convenient to prop up on the kitchen counter.

They are a gentle visual reminder for forgetful grandparents.

They are a thoughtful visual reminder for your dear friend who is hosting your child for a sleepover.

They are a lie detector for your lazy-ass ex who never bothers to give the meds and supplements. If the board returns home with bags still attached, you will know exactly which supplements were forgotten.

Nurture Yourself—No Guilt!

She is delightfully chaotic; a beautiful mess. Loving her is a splendid adventure.
Steve Maraboli

Schedule time for yourself once a week at least. Sleep, see a movie, take a walk, read a book.

Make your bedroom a haven. Keep your bedroom neat and clutter- free, even it means you have to pile the garage sky high with stuff. Create a haven for the end of the day.

Sleep once a month at a hotel if you are completely sleep-deprived; you can’t take care of others if you are burnt out. Make sure the hotel alarm clock isn’t set for 5 a.m.

Nurture your brain. Music, audiobooks, and podcasts help keep your mind fed, especially when the routine of your day can be numbing.

Recommended book: The Happiness Project by Gretchen Rubin.

Watch only happy movies and comedies for a while. Laughter increases endorphins, strengthens the immune system, and decreases stress.

Turn to prayer or meditation that matches your beliefs. It’s very centering, relieves anxiety, and can be done anywhere, anytime. Serenity is very important when caring for a child who requires constant vigilance.

Wear a Vitamin B12 patch. This is an amazing hack for better energy and memory. Add a margarita and it’s a party!

Yo GABA GABA. Gamma-aminobutyric acid, or GABA, is your new best friend. It is a calming neurotransmitter our own body makes. It’s also sold over-the-counter and won’t break the bank. I take it three times a day.

Try Alpha-Stim. It’s great for the anxiety and insomnia that autism parents experience. I was very skeptical at first, but had great results and now love it. Cranial electrical stimulation (CES) is an old yet effective therapy. Wear this device (www.Alpha-Stim.com) twenty minutes a day and soon you’ll be more relaxed and sleeping better.

Nurture Your Children

Let them be children and just play; it cannot be all therapy all the time.

Get rid of yelling and dump the sarcasm. Many ASD children cannot interpret the meaning of a raised voice or sarcasm and it just agitates them further. Their mood will mirror yours. Your house will be calmer if you modulate your voice.

Nurture Your Friendships

Something has to give time-wise, but you can stay in touch. I never had time to be one of those “ladies who lunch,” but my true friends were delighted to see me once every month or two (or three). Don’t let your friendships die.

Nurture Your Love Life

Remember that beautiful, lazy Saturday morning move of lying half-asleep in bed and hooking your ankle over your spouse’s ankle—and all that it says? I love you, I’m perfectly happy, I’d love some coffee, but I don’t want to get up and leave you. . . . I don’t think I ever got to do that again after my children were born.

Try to have a date night every week or two, even if you don’t think you have the time.

Leave love notes for each other around the house and in the car. These create little bright spots in an otherwise sometimes thankless day.

Attend seminars, read books, or listen to audio courses on strengthening your marriage.

Recommended book: The Five Love Languages by Gary Chapman. I learned so much about my husband after we attended a weekend seminar on this book, hosted by our church.

Kick pets out of the bedroom. You’ll breathe better, sleep better, and avoid Sit-Com Sex (more on that in a moment).

Did having a special needs child affect your love life? I know it did mine. I hope the “sex chart” in Table 2-1 gives you a much-needed laugh.

An Example of Sit-Com Sex

We were in the middle of silent Street Mime Sex one time, and our miniature dachshund Puddles took advantage of my silent “O” face to give me a deep French kiss. It was totally horrible, and we couldn’t stop laughing for hours. Alan would just look at me and start laughing. Kicking pets out of the bedroom helps minimize such disasters. And lock the door.

Table 2-1

All of these tips, hacks, and advice should get you in better shape to tackle the real-life challenge of getting your child healthy enough to get the most out of school, therapy, and social opportunities. Let’s go on to Chapter 3 and start your child’s journey back to vibrant health on the autism spectrum.