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special needs parenting

Hurricane Redux: Preparing for the Storm


Hurricane Redux: Preparing for the Storm

It seemed a good time to repost our Hurricane Prep tips for anyone with special needs, any caregivers, anyone with anxiety, anyone who is being driven slightly mad by the constant hysteria of every newscast, anyone watching “So You Think You Can Dance” or “MasterChef” and trying to ignore the hurricane tracker in the lower left of your screen…so all of us really.

When the Friday track of Hurricane Dorian showed a direct hit to my house as a Cat 4, I did a lot of deep breathing and repeating Byron Katie’s mantra “I’m a lover of what is.” Then I would notice “what is really'“ — it is sunny and beautiful; it is time for lunch; it is laundry-folding time. There was never a moment on Friday when a Cat 4 was ripping our roof off the house. It was only when I watched the news and lived in the land of what might be that I felt anxiety.

These behaviors along with our Write Out Plan should help not only Henry, who is already eyeing his calendar and saying Hurricane over and over, but will help me. It’s impossible not to be filled with anxiety when you spend five days playing out all the ‘what could happen if’ scenarios.

Hurricane Irma: Write Out Plan

September 8, 2017

With a hurricane, you can see it coming, so it feels like you have some control. But really it's a bizarre state of flux, fear, and fine. This is not easy for anyone, but for someone with autism who relies on consistency, especially in a schedule, it’s really tough.

What Henry and I do to manage the unknown is write out our plan. Here’s our plan for two of our Hurricane days:

Saturday, 9/9: Stay in the apartment. Call Granddad and say Happy Birthday. Charge electronics all day. Have some snacks. Maybe at night we’ll lose power and air conditioning.  Maybe we’ll take the sofa cushions and hang out together in the big bathroom.

Monday, 9/11: Wait for the police to tell us all clear. Call dad and see who has power! Make a plan to go see dad when it’s all clear. That might be Tuesday.  

Henry sat with me to talk it out and then we wrote it down. He took the papers and he’ll likely carry them with him for the whole weekend. Even if we end up in the bathroom with flashlights, pillows, bottled water, and a thermos of coffee with Baileys. We’ll both have some stress moments throughout the weekend so we’ll go back to the papers and look at the plan. We’ll read it out loud. And it will soothe us to see that Tuesday will be different than Sunday.

A friend at work mentioned that her young nephew gets anxiety. We talked about having him create his own Hurricane Preparedness Kit. What does he need to feel safe and in control?  Headphones to keep out the noise? A special blanket or pillow?  A favorite book or toy?  Have him make up that kit and keep it with him throughout the weekend.  Allow him to be in charge of his kit. He can lower his anxiety if he is in charge of what he can actually control.  

And isn’t that really it? This is how to handle the storms of life. We live as if we know what is coming because this day is Wednesday and it goes like this every Wednesday.  Then we see something starting to churn to the South, the wind picks up, we bring in the patio furniture, and bam! We’re in the eye.

A good spiritual storm plan is pretty close to a Florida hurricane plan:

1. Stock up on essentials that keep you hydrated and nourished.

2. Hunker down and have things to do, like a good book to read, so you aren’t looking at the predictions every five minutes.

3. If you need to evacuate, do so patiently and kindly.

4. Write out your vision and hold it close.

4. Re-read the plan and remind yourself that this will pass.

It’s good to have a plan in place long before we’re hit, so we can control what we can control.  So that we remember that by Tuesday, it will be different. 


Not That I'm Complaining...


Not That I'm Complaining...

I came home to silence, the kind I needed — the whirr of the refrigerator, the click of the ceiling fan. It’s been two months without a day alone.

Not that I’m complaining. 

My husband — the beloved husband who crossed an ocean for me, for our life together, who is adored by his mother-in-law, adopted by his sister and brother-in-law and tolerated by his twenty-three-year-old autistic ‘step’ son — is training into a new restaurant which means a nine to five schedule with weekends off.  Same as my schedule. A departure from his two weekdays off and evening shifts.  How wonderful it’s been to spend time together. 

Well, spending time together isn’t really right — he was studying and fretting and exhausted from the ungodly regular person experience of a 6:30 a.m. alarm.  Also he’s Egyptian (Middle Eastern, man, traditional, blah, blah, blah) so requests for dinner and pressed clothes and his coffee were more like orders this month.  

Not that I’m complaining.

He’d do the same for me if I was learning a new job with all the executives in the company watching my every move. I’d do the same for you.  

His training was going on during the time that my parents were preparing to go north for the summer. While they are a very capable eighty-fourish, they are, well, eighty-four.  Requests for help with the thing on the thing (cable box) or the thing that won’t (internet) were coming rapid fire until they left.  They made it to the cabin and the Russians delivered their car. I kid you not, a family of Russians have a car delivery business and drive a rig from Spokane to Orlando for them.  So, all is well.  Except for the phone call last Thursday, “Can you stop by the house and look on the shelf upstairs, over the computer for my Powerball numbers and in the closet on the shelf above the shoes for the Bose noise cancelling headphones?”  One assumes that if dad wins, mom will need the headphones to cancel out the partying with the Russians.  

Not that I’m complaining.

It’s just of note that also my daily lunch hour for the last three weeks was devoted to picking up Henry, who is in a job training program. They needed to change the schedule last minute and I didn’t have the emotional ability to call Access Lynx and update his disability services van. Somehow mustering the strength for a daily drive across town was more doable than being on hold for forty-five minutes. 

Not that I’m complaining.

No. The complaining came when I stepped into my gloriously silent home sure that the husband would not be back until 11 p.m., knowing that Henry was with his dad until the next day and the parents are being cared for by the Russians.

I dropped my bags on the kitchen bar, stepped out of my clothes and headed to the sliding glass door.  I stepped into my bathing suit, opened the door and heard, no, it wasn’t thunder. It must be the neighbors rolling out their garbage. My feet hit the heated concrete porch and I heard it again. The roll. The boom. Then the pool which was reflecting the sun turned to gray in front of me.  

I started to feel the complaint rise up in me.  How could you, God. Universe.  Thundercloud.   How could you?  I stood looking at my beautiful pool, thinking about my how I hadn’t complained for two months. I wanted to scream but instead said to no one, since I was actually alone, “Well. That hurts my feelings.” 

With that admission I somehow moved from complaint to the understanding that I was tired, my energy poured out on people I love and on their well being.  And now I had a choice.  I could sit in the rain speaking out loud my What Have You Done For Me Lately complaints or I could choose me. 

I sat down at the piano, the one my parents bought when I was six or seven and showed an interest.  The interest waned at fourteen but not because I was fourteen, rather because I was terrible. Really. Very bad. It’s possible I haven’t played the piano in 20 years.   

I pulled out the Easy Classics and played. Mozart tepidly, Bach badly and found a Couperin that wasn’t horrendous. Then I made a BLT (turkey bacon, of course, Egyptian in-laws) and sat under the cover on my porch while it rained, amazed by what life is like when I can’t complain.  


French Fries, Faith and Losing a Friend. 

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French Fries, Faith and Losing a Friend. 

There was a particularly desperate time in my life. At seven years old, Henry was in the full bloom of behaviors. In the car, he’d reach from the back seat to my driver’s seat and pull my hair. He’d scream. I’d scream. Once, I pulled under an overpass and we shrieked until there was no more sound. Then we drove on. 

One of those shrieking, desperate afternoons I was wearing, sweat pants, and a pale t-shirt with a sweater, all purchased from the Longwood Goodwill, as were all my clothes at that time. Henry insisted we go inside to the play place. The play place was a particular trial for me. He’d loose his socks or shoes or some article of clothing up in the highest tube. His play would confuse and challenge the other kids. The fear of a toileting mishap was constant. That day I was too tired and beaten up to argue, so in we went.  

In the warm afternoon I removed my sweater and left it in the car. It wasn’t until after we were in line that I saw that the pattern on my bargain box bra was showing through the modest pale pink shirt. I looked Iike I’d been panhandling for the 50 cents for our fries. 

When we got to the counter, the kid stepped aside to let the manager assist us. I looked into the face of my friend and pastor, Orlando Rivera. He was getting a business degree and felt he needed to have real-world management experience. He was also pastoring a church downtown and had moved his family, his wife and and then three or four of what would ultimately become 10 children, to a home on Westmoreland Street. There in the poorest neighborhood, they lived church from their front porch.  

It was school pick up time, so the play place was miraculously empty. Orlando took a break and brought a tray of fries — GFCF for Henry, vegetarian for him. We started what would be a semi-regular session. Henry played in his way and I received the counsel of my friend, pastor and manager of the Winter Park McDonalds.  

Last week, I got a text from my friend Sheryl whose birthday falls on August 3rd, the same day as mine, the same day as Orlando’s.  “Our birthday brother…” it started. I read it several times without understanding. Tragic. Traffic. Accident. Lost. And then I found myself on the ground and heard a wailing sound. My husband was next to me holding my phone saying, “I’m so sorry.”  

Nothing in my faith tradition, religious practices or in holy text helps me make sense here.  There is no a+b=c to look up. There’s no information to apply that helps me understand. 

But here’s what comes to me from the mystery of faith: the resonance of a man who took time for french fries with a desperate mother is eternal. It rings now in the lives of his children. It rings now in my life and Henry’s life. And its beautiful sound is ringing now in the heavenlies. 

Orlando Rivera

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There Are No Snacks


There Are No Snacks

Henry called me on President’s Day.  He never calls me.  When I leave him home alone to grocery shop he has a set of rules:

  • Don’t Go Outside
  • Don’t Answer the Door
  • Answer Me When I Call
  • Don’t Jump On The Bed

He never answers, preferring to text me three days later to tell me he’s fine.

I was at work when his name and face appeared on my screen.

“Hi, Honey. Are you OK?”

“Hi, Mom.”

There was despair in his voice in just those two words.

“I fell. I’m hurt.”

“Oh no. What happened?”

“I fell. I’m hurt.  And there’s no snacks.”

“Oh no, I’m so sorry.”

Except that I’m not sorry. I’m the one who instituted the no-snacks policy.  He turned 22 and his teenage-boy metabolism is slowing to adult-man rate but he’s still eating like a teenage boy.  We met with his doctor who told him to lose weight. I printed up memos for the refrigerators of all three houses where he divides his time. The schedule outlines specific times for meals and one snack. Then for his science project he wouldn’t choose a topic, so I chose for him and titled it You Get A Serving Size! and he had to cut out pictures of serving sizes and we made a meme of Oprah for the heading. Yeah. I’m that mom. 

“So, you fell.  Are you at Dad’s house?”

“Yeah.  I’m at my Dad’s.”

“Did you talk to your Dad about being hurt?”

“Yeah, I talked to my Dad.  I’m hurt. And there are no snacks.”

“What hurts? Your knee, your head? Are you bleeding?”

“My tummy hurts.  There are no snacks.”

“Hmm.  Maybe the problem isn’t the fall, maybe it’s that you’re frustrated that there are no snacks.”

“I’m hurt and there are no snacks.”

“I’m so sorry.  I love you.  Do you feel better?”

“Yeah.” Click.

I followed up with a  congratulatory call to his Dad for maintaining the no-snacks policy under what was obviously intense pressure.

Giving up something that fills us is hard, even if the thing is artificially flavored and your goal is something much more fulfilling.  It feels empty in your tummy.  If makes every little bump hurt worse when there are no snacks.  The cosmic reality in this is that there are no snacks.  There are no short cuts to what we really want.  There’s no way to get that true fullness we crave by shoving something, anything, into that empty space.

I’m saying this from halfway through a Lenten fast from alcohol. How can there be three more Sundays of this?! Yesterday, I toyed with the idea of lying to my Muslim husband and saying that in the Christian faith we only fast for half the time, so I could have a chardonnay now.  NOW. Then I thought, that’s just me facetiming God and saying “I’m hurt and there are no snacks.” My tummy is empty and that space usually filled by a Sunday afternoon white feels uncomfortable and ill-fitting and a little boring. There is something I want that is filling. I’m not sure what it is exactly, but I know that the best way to find out is to clear out room, forgo snacks, feel empty and make room for something really filling.