2

Conscious Un-Halloweening

How early did your son or daughter start talking about Halloween costumes this year? How many times did she change characters or ideas?

Some autistic kids are fine with this holiday, but my kids…

Well, they HATE Halloween.

My kiddos will happily support the pumpkin patch, corn mazes, orange lights, falling leaves, free candy, and spooky decorations, but they despise October 31st. Wear costumes? No, thanks. Trick-or-treating is out of the question. These are aversions that I had to pause to wrap my head around—because what kid doesn’t love dressing like a superhero and collecting free candy? I had visions of my adorable children dressing up, turning our Radio Flyer into the Batmobile, and joining a neighborhood trick-or-treating posse. Every October, I start concocting costumes for the whole family. And every Halloween, without fail, my kids have meltdowns. If Gwyneth can coin the phrase, “conscious uncoupling,” then my family is hereby consciously uncoupling with Halloween. It’s conscious un-Halloweening.

There are a few things we’ve done over the years to soften the blow of costumes and candy. Autism Speaks provides good Halloween prep and tips for kids on the spectrum, including:

  • Create a visual story of what Halloween may be like for your child.
  • Try on costumes before Halloween; and if your child does not like his costume, don’t make him wear it.
  • Speaking of costumes, consider a Halloween costume that fits over your child’s regular clothes, such as butterfly wings or capes.
  • Practice going to a neighbor’s door, ringing the bell or knocking on the door and receiving candy before the big day.
  • Know your child’s limits and do only what he or she can handle.
  • Take your child to an activity in the community, such as a school festival or a neighborhood party where the child is already comfortable and knows people. Also partner with family and friends that your child likes.
  • If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.

The Easter Seals also provide ideas for sensory-friendly Halloween alternatives here.

We usually trick-or-treat at one house (Thing 2’s godparents who live around the corner), and head home. Several years ago, we were delusional overachievers and attempted to trick-or-treat down our entire cul-de-sac. My nonverbal oldest son carried a business card like this that year:

AutismHalloween

He was in tears after ringing the second doorbell and had to be carried home. Our neighbors were all nice and patient, but Thing 1 wanted to be home, on the couch, and naked. Wearing layers, let alone a costume, is not his idea of fun. Our kids’ costumes over the years have been basic one-pieces or Melissa & Doug dress-up items, and I still feel like I am torturing the boys.

This year, we are liberating ourselves and not stressing out our kids. Instead, the boys and I decorated our front porch with a straw bale, mums, pumpkins, and a light-up ghost. Thing 2 picked out the ghost and declared it, “REALLY SPOOKY!” Thing 1 felt strongly about buying yellow mums. Thing 3 chose decorative metal stakes for the yard, including a dancing spider. We had fun, the porch looks amazing, and no costumes, children, or parents were injured in the process. At only 18-months old, Thing 3 doesn’t care or feel left out (yet), so this Saturday we are taking the big boys to a football game and not worrying about ghosts, goblins, and Yoda’s that come knocking. In the grand scheme of things, costumes and trick-or-treating are not life skills my kids need to survive or thrive. I complain when other people try to force my square pegs into round holes, so why should I treat them that way every Halloween? Nope, not anymore.

Only took me a few years to get there.

Halloween

7

What’s Wrong with THAT Kid?

Let’s talk about sleep.

In our case, it would be no sleep.

Thing 1 goes through phases of (thankfully short-lived) poor sleep. Usually he quietly sneaks downstairs, steals the iPad, and falls back to sleep watching Thomas videos on YouTube. On the other hand, Thing 2 (our middle child and second son diagnosed with ASD) has survived on very little sleep for years. He is only 5.

sleep

(Image source: http://dailycaller.com/)

According to WebMD, “Researchers estimate that between 40% and 80% of children with autism have difficulty sleeping. The biggest sleep problems among these children include: difficulty falling asleep; inconsistent sleep routines; restlessness or poor sleep quality; waking early and waking frequently.” Thing 2 has all those symptoms. The alleged culprits behind poor sleep for autistic children include low tryptophan and melatonin levels, gut problems, sensory disorders, anxiety, mast cell activation, and Lord knows what else.

We describe Thing 2 as an anxious child. Changes to his routine and transitions are tough. He has always exhibited separation anxiety. He grinds his teeth constantly and makes aggressive (loud and long) vocalizations. He is like the Energizer Bunny and keeps going and going and going… We’ve battled poor sleep for a while, and adding melatonin at bedtime was our first intervention. While it made falling asleep peaceful, it never kept him asleep. At some point between 2:00 and 4:00 a.m., Thing 2 could be heard crying in his room or the hallway. We tucked him back in bed and told him to go to sleep. Sometimes that was enough; more often it was not. To protect the sleep of our other children on noisier nights, my husband or myself head back to bed with Thing 2 or let him sleep with us. At least we are kind of sleeping then, with a spastically flopping and whimpering kid by our side.

Thing2_sleep

Thing 2 slept through the night a couple times this winter. Then we had constant night waking through spring and summer until August 1–the last time he slept through the night. He typically sleeps from 10:00 until midnight, then he is awake on/off and may sleep in bursts of 30 minutes to a couple hours. When our alarms buzz and it’s time to get ready for the day, Thing 2 has an epic meltdown because he is too tired to move. Mornings are miserable. Whether it’s lack of sleep or anxiety or something else, I don’t know, but he also no longer enjoys activities that made him happy. Now swimming and playgrounds and so many things lead to meltdowns.

You name it, we tried it. We maintain a bedtime routine, limit screen-time and noise, increased melatonin and switched to an extended release, supplemented l-theanine (for relaxation) and 5-HTP (to boost serotonin levels). Nothing made a difference. At his 5-year check-up this summer, I explained how sleep went from bad to worse and asked that Thing 2 be evaluated for ADHD or a sleep disorder or an anxiety disorder or all of the above. None of those would/could be done by our regular pediatrician, so she recommended we see the psychologist who performed the autism assessment. In the meantime, we gave clonidine a try. I hoped clonidine would be the answer to our prayers for more peaceful nights because many friends recommended it, saying it improved ADHD symptoms and sleep for their autistic children. The choice to medicate is difficult, even when it comes to supplements. I worry about the long-term or side effects of medications, but at some point it has to be an option on the table.

I called our psychologist’s office and was told she only does autism assessments, not ADHD or anxiety. I reached out to Thing 2’s teacher and BCBA for suggestions and got articles about sleep studies. I called a local special needs pediatrician and was told she was booked through March and there is a WAIT LIST for April appointments.

It’s September. And clonidine only made things worse.

At the end of my rope, I called our pediatrician and left a message that clonidine was ineffective, did we have other options, and could she pull any strings with that ridiculous wait list for the developmental pediatrician. The voicemail I got back: “This is as far as we go as pediatricians.”

That was the precise moment I snapped, and it was ugly. The floodgates that are my tear ducts opened, I called the office back and demanded to speak to our doctor because her message was unacceptable. I explained to her that we are in crisis mode, that Thing 2’s erratic behavior affects all parts of his day, and I am becoming the parent I never wanted to be: cranky, mean, yelling, impatient, and exhausted.

She’s getting us an appointment with a neurologist as soon as possible. For Thing 2, not me. But maybe I should also have my head examined.

It’s one thing to deal with autism every day and the ways that neurological disorder manifests itself. I realize it’s a journey with peaks and valleys, and that is fine. What deflates me is the lack of understanding we get from medical professionals. Autism is complex, and our kids are sick–some chronically. Whether they battle gastrointestinal problems, inflammation, seizures, feeding disorders, anxiety…couple that with learning disabilities, speech delays, processing and auditory disorders, and sensory sensitivity. My kids do not have the communication abilities to tell me what hurts, so we need real partnerships with doctors who can flush out these symptoms and bring peace to their little bodies. It’s time for the medical field and insurance companies to stop dismissing and disrespecting our problems as “that’s autism,” as if it’s an educational problem to tackle, and spend the time necessary to HELP our kids live healthy, happy lives. And these wait lists everywhere? Give me a break!

Thing2_sleep

This kid is tired.  So are his parents.

In other news, I’m breaking up with our pediatrician. And Thing 2 slept last night after a dose of hydroxyzine before bed. Hallelujah!! But me? I woke up every hour thinking, “Why isn’t he awake? What’s wrong? Is he still breathing? What’s happening?” It’s bedtime PTSD.

1

One Perfect Day

We are lucky to have access to camps, sports, and recreational opportunities in our area for children of all abilities. We just spent a couple days in Virginia Beach for Surfers Healing–which is one of the most amazing events I’ve ever witnessed. Hopefully you’ve seen them highlighted in the news. We first heard about the group years ago…

That was before we were also on the autism path. Then last year, parents from Thing 1’s class talked about their experience with the surf camp. I jumped online when the registration link went live and signed up Thing 1 for Surfers Healing. On the surface, it seems like a simple concept: an experienced surfer paddles out tandem with an autistic child to ride waves. Once you see these surfers in action, you are in awe of both their athletic strength and strength of heart. And all the volunteers…volunteers everywhere showing extraordinary patience, compassion, and enthusiasm.  It’s beautiful and poignant and such an awesome sight to see.

This year, we signed up both Things 1 and 2 to surf.

Since we don’t really take vacations, we treated these two nights at the beach like one. Then Murphy’s Law happened…anything that can go wrong, did go wrong. But I have to back up a few days to explain it all.

On Wednesday night, we checked on Thing 1 after he sneaked off quietly to bed to find projectile vomit all over his bedroom. We woke him up to clean and decontaminate, only to watch him puke all over the hallway. A few hours of carpet cleaning later, the house still stunk, but everyone was in bed and resting comfortably. Thursday morning, the sun was shining, birds chirping, and Thing 1 seemed happy with no signs of distress. Thing 2 woke up coughing. Great… But since the cough did not sound horrible, we gave him some cough syrup and hit the road.

We stopped at Busch Gardens and spent a few hours riding roller coasters before continuing on to Virginia Beach. The boys rode the log flume for the first time, but of course it turned into a Thomas & Friends reference…we were on Misty Island, with jumping Jobi logs, looking for Bash, Dash, and Ferdinand. It was a great day, the boys were well-behaved, and we enjoyed family fun time while Thing 3 stayed home with the grandparents.

Busch Gardens Tram

We checked into our hotel Thursday evening, ate dinner, talked about how awesome the next day would be, and went to bed.

That night, Thing 2 woke up, coughing like crazy, gasping for air, and burning up.  We stood outside urgent care when they unlocked the doors Friday morning…except I didn’t have his insurance card, the receptionist would not accept my husband’s card with the same policy numbers, so I called our insurance company to fax a copy of Thing 2’s card before we could register. That removed the “urgent” from urgent care. Thing 2 felt miserable and made sure every staff member knew how upset he was by screaming and kicking and hacking all over them. A couple hours, one negative strep test, and one clear chest x-ray later, I was told it was viral, and we left with a steroid prescription and continued breathing treatments. No surfing for Thing 2. We returned to the hotel where he collapsed and took a nap.

Meanwhile, my husband took Thing 1 to the beach. Last year, Thing 1 was intrigued by the water and activity, but flipped out when it was his turn to surf. The life jacket went on, and he lost it. This year he was cool as a cucumber. Life vest went on and he jumped on the surfboard without hesitation. With Thing 2 sleeping on the sofa and my husband sending me pictures and video, I cried a little. I was so proud of him and bummed to miss it.

There Thing 1 goes…

IMG_7207-e-69314

After napping and meds, Thing 2’s fever broke, and he kept asking to “go to the water.” We ate dinner on the boardwalk and let Thing 2 put his feet in the water.

Surfers Healing VB

Except he did not stop with his feet and jumped into the ocean with his clothes on. Typical.

Thing 1 and I walked to the end of the pier and saw a fisherman hook a shark. That was a little disturbing, but Thing 1 was not phased.

Surfers Healing VB

Surfers Healing Virginia Beach is a two-day camp serving over 400 participants. Felt like a long shot, but I contacted them and asked if Thing 2 could return the next day if he remained fever-free. The response was only one word: “Absolutely.” Thing 2 slept well that night, his cough was not oppressive, and his fever did not return. Saturday morning, we were back at the beach! Like Thing 1 last year, Thing 2 was not a fan of the life jacket. He started crying, but a volunteer scooped him into his arms and carried him to the surfboard. No time for hesitation. I’m grateful for the patience of that volunteer and the surfer–because it took Thing 2 a few minutes to relax. He loves the water, but being around strangers and trying something new was terrifying. Once he got his bearings, the rest was magic.

Surfers Healing VB

Surfers Healing VB

Surfers Healing VB

From there, we headed home via the Jamestown Ferry. It’s funny…take the boys to the beach for two days, and it’s just okay. Put your car on a boat and cross the water, and they are amazed. Needless to say, the Ferry was the piece de resistance.

Jamestown_Ferry

My cell phone rang on the way home. It was the urgent care nurse we saw on Friday. A radiologist and another doctor reviewed Thing 2’s chest x-ray, and it was not so clear after all. He has pneumonia. I don’t think I will win a parenting award letting my pneumonia-infected 5-year-old surf and frolic around the Tidewater, but I guess it was worth it for one perfect day of aloha therapy.

0

Spinach Mini-Muffins

All because this lonely jar of baby food took up valuable pantry real estate for too long…

spinach muffins

I tried to donate it, but the food bank does not accept glass containers. I hated the wasteful idea of throwing it away. So into muffins it went.

Ingredients:

  • 1/2 cup unsweetened applesauce
  • 6 oz. baby food (I used the jar above, but any flavor/variety will work)
  • 1 egg
  • 1 1/2 teaspoons vanilla extract
  • 1/3 cup sugar
  • 2 tablespoons coconut or vegetable oil
  • 1 1/2 cups all-purpose flour
  • 1 teaspoon baking powder
  • 1/2 teaspoon baking soda
  • 1/2 teaspoon salt

Preheat oven to 350 degrees and grease two mini-muffin tins.

In a stand mixer, combine applesauce, baby food, egg, vanilla, sugar, and oil. Separately sift together flour, baking powder, baking soda, and salt. Slowly add the dry ingredients to the applesauce mixture and blend until just combined. Scoop the batter into greased mini muffin tins, filling each cup 2/3 of the way. Bake for 12 minutes. Allow to cool and serve to your hungry toddlers! Makes 24 mini muffins.

spinach muffins

Two thumbs up from Thing 3 and his cock-a-doodle-doo hair. The muffins were moist and pretty yummy, if I do say so myself. The dog stole three off the cooling rack when I wasn’t looking, so they are also greyhound-approved.

spinach_muffins