The Free Ranger

My 19-year-old son did not graduate from high school last year with his peers. Instead we made the decision to keep him in the public school system until he is 21. Ben has a genetic disease called Familial Dysautonomia which affects his cognitive and physical abilities. College is not in his future and we thought it would be best to utilize the public school/county services as he begins the next phase of his life.

Contemplating this next chapter is so much harder than with my typical children. While they may have an inkling of what they want to do when they grow up, Ben truly has no idea. I don’t think he can visualize his future beyond the present and would probably be happy living at home for the rest of his life. So besides taking care of his physical health, which is no walk in the park, I now am responsible for imagining his future. Sometimes this feels like a crushing responsibility.

We were elated to arrange an “internship” at our local Jewish Community Center’s preschool where Ben will help in a classroom of 4-year-olds from 8am – 10:30am. The high school Transition Counselor travel-trained him to ride a public bus from the JCC to his high school for some afternoon classes. Ben has gone to camp at the JCC since he was 3-years-old so it is a safe, comfortable place for him.

It’s still a little terrifying. There is no nurse at work, like there is at school. We put together a plan so Ben can take care of his daily medicine and g-tube feeding before he leaves the JCC. If one of his health episodes arises while at work, we taught him how to handle the situation. This is a huge step in his self-care, heightening his body awareness and giving him the ability to take care of himself.

I have zero concern about Ben liking the work or his behavior in the preschool classroom. He is sweet and thinks the little kids are “adorable.” Ben gives me daily reports about what they did and what they had for snack. He said he helps the little kids with activities and clean up.

The bus ride definitely gave me pause but I was excited and fairly confident that Ben could do it. The travel trainer was a careful professional who thought of things that I had never really contemplated for Ben, much less my typical children.

She said, “Ben said that he has never discussed safety in the community with you.  Not sure if this was an accurate statement, but he seemed surprised that someone on the bus might want to take his cellphone, ask for money, appear to be drunk or on drugs, looks a bit sketchy, etc.  He was unsure how to respond when discussing ways to stay safe. Have you talked in detail with him about this?  What about if there is an emergency (such as weather related or a terrorist attack)?  Have you discussed a family emergency plan?”

Clearly I have failed as a mother. I have inadvertently sheltered Ben as I have been so focused on keeping him healthy and happy. I haven’t been completely negligent but my “safety” focus was on his personal space, i.e. “no one should touch your private parts, etc.” We have always handed Ben off to another responsible person or institution who was looking out for his well-being. This is a new level of “free-ranging” that we have not experienced with our most vulnerable child. I taught my other children many of these things but they also use their intuitive senses to pick up danger in the world around them. Rather than beat myself up, the teaching for Ben begins now – it’s not too late. He has learned to always sit near the bus driver who he can ask for help if needed. With his phone in his pocket, Ben has become aware of the people and places around him. Yes, he has a little fear but no more than a typical person. New things are exciting and a little scary.

But a family emergency plan? Does everyone have these? I don’t recall one from when I was growing up. I hadn’t really thought about how to instruct my kids in the event of a disaster or say, a nuclear attack. The only thing that comes to mind is something my smart aleck uncle told me when I was a teenager. We were sitting on my grandmother’s apartment balcony and I wondered aloud what would happen if the balcony snapped off the building and sent us plunging down.

“You know what you would do?” he asked me.

“Yes?” I asked, eager to hear his sage advice.

“You put your head between your knees and kiss your rear end goodbye,” he slyly said.

And that is all I could think of. I know, I know – I will tell my kids to find the nearest adult if their cell phones don’t work. Do we have to come up with a meeting place? Maybe I’m just too much of a fatalist to think these plans make much of a difference. Hopefully I have given my children the tools they need to be resourceful and strong.

Ben has successfully learned to take the 13 minute bus ride from work to school. He has an ID card, a bus pass and his backpack and is very proud of his achievement. It’s thrilling for me to watch him achieve this independence since he is unable to drive. His 16 year old brother is about to get his driver’s license but the bus riding brother makes me just as proud.

It’s scary sending children out into the world after keeping them safe when they are young. But there are many wonderful experiences to be had out there. Here’s to keeping my fingers crossed and hoping for the best. Oh, the places you’ll go Ben!

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Today University

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My kids and I tagged along on my husband’s business trip to Mexico last week so we headed to the airport on a cold, snowy morning for a 7:00am flight. We trudged through security and were making our way to our gate among the tide of travelers.

My husband is six-feet tall, giving him a better view of the world than 5-foot-4-inch me. “There’s Katie Couric,” he casually said. Sure enough, not five feet in front of me was Katie. I was so excited. Katie Couric is an iconic celebrity in my world. I was a fan of the Today Show in my earlier adult years. I followed Katie’s life – the birth of her daughters, the early death of her husband to colon cancer. She was raised in the Washington area (Virginia, actually) so I always felt a connection for a hometown girl. It looked like some other people had recognized her and were chatting and walking with her.

We kept our onward movement and ended up walking next to Katie. She looked at us and smiled.

“Hi Katie,” I said.

Thus began a lovely interaction.

“Were you here visiting family?” I asked.

“Actually, I interviewed Rand Paul. He’s running for president,” she replied.

She remarked how she was surprised that so many people had recognized her this early morning as she felt she looked terrible.

“Katie, you look like a regular person,” I assured her.

“I’m Susan and this is Brad,” I said. “Since we know your name, it seems only fair that you know ours.”

We chatted about our upcoming trip. Then Katie told us that her mother had died recently and they had sold her house.

“My mother died too and my dad’s selling their house,” I commiserated.

She was so lovely and nice and normal. It was such a thrill for me. I called my sister when we changed planes. Our mother was a huge Today show fan. We used to joke that she studied at the University of the Today Show, where she got much of her news and information. She always thought that my husband looked like Matt Lauer, although Katie did not mention the resemblance.

After Katie left, our kids asked, “Who was that?” Of course, they had no idea the magnitude of the celebrity sighting. They sort of understood after hearing me tell the story to several people at the meeting we attended.

“I can’t believe you did that,” one of the spouses said. “I would never do that – I would worry that I was bothering her or intruding on her privacy.”

I think I’m a pretty good reader of people and felt like taking a risk. Katie was open and receptive to chatting. If she wasn’t, I would have left her alone. We were walking to our destinations the whole time – I did not ask for an autograph (does anyone even do that anymore?) or take a selfie with her. We were just two people making a connection that cold, early morning. I like to think my mother got a huge kick out of my celebrity sighting from her grand view up in heaven.

“Maybe your mother sent her,” another spouse suggested. Maybe she did.

I like to take occasional chances. If not Today, than when?

 

 

The “Joy” of Air Travel

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We recently went on a family trip. It’s easier now that our children are older.  All they need is their screens and some sugar and they are good.  We bring our 15-year-old’s wheelchair, that he uses occasionally, to make it easier getting through the airport.  Adding to the stress of travel is the anticipatory stress of going through security because of my son’s feeding-tube supplies and medications.

On the first leg of our trip, I made the security people aware that I had medical liquids in my backpack. They took my son’s wheelchair and simply let the bag go through the machine – it was so easy.  What a relief! I was not so fortunate on my return flight. I was alone with my two eldest sons on the way home.

Again, they took the wheelchair through. But when I told them I had medical liquids, they pulled me aside and looked at the contents: three cans of formula and a small bottle of liquid medication. I was given a choice.  They could open the cans of formula to test them; but then I would not have formula to feed my son. Or they could search through my bags and thoroughly pat me down.  Really? I’m just a middle-aged lady trying to get from Point A to Point B.

I had no choice and felt like a cornered animal. They searched through everything in my backpack and purse. Then I had to submit to the pat-down.  They called a woman TSA officer over to do the honors.  I wanted to cry. I stood there as she explained what she was going to do. She patted down my body and checked the waistline of my pants. Normally one to find the humor in things, I could find nothing funny about this.  I had to take off my shoes again to be checked. I quietly cooperated when what I really wanted to do was scream. Other passengers tried to avert their eyes but gave me pitying looks, glancing between me and my child in the wheelchair.

It was such an indignity and a dehumanizing experience.

“What’s dehumanizing?” my disabled son asked as he listened to me complain to my other son when it was over and we were walking to our gate.

“It’s when someone makes you feel like you are not a human being, but like an animal or an object,” I told him.

I realize we have an enormous country with thousands of airports. And ever since September 11th, authorities have tried to do many things to make air travel safer. Some things simply give us the illusion of safety.  The TSA workers are just doing their job but they do not make me feel any safer.

Some people may say I should just avoid flying.  I tolerate the basic stupidities everyone must go through to get where I want to go.   I leave my liquid deodorant and hair gel in my checked luggage, even though I think it’s pointless.  I can’t do that with my son’s medical supplies. It’s the senselessness of a one-size-fits-all screening process that sends me over the edge. Are the skies really safer with random, inconsistent screening?

There must be a better way.