special needs

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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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A Glimmer of Hope

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Something unexpected happened while we were in Israel recently. We were having a Passover Seder in a banquet hall with several other families from our Jewish day school. There was a lull in the evening as people were eating and going back and forth to the buffet. Out of the corner of my eye, I noticed my sixteen-year-old son with special needs sitting on a sofa talking to someone. Not just a family member or a family friend, but a girl, and a teenage girl at that. A lovely younger sister of my older son’s classmates, with health challenges and issues of her own. What struck me was that they actually seemed to be engaged in conversation – something that is generally difficult for my son to sustain.

It was so adorable – it almost made me weep.

“What’d you talk about?” his siblings and I grilled him afterwards.

“We actually had a lot in common,” he said matter of factly. “We talked about tv and movies.” Ah, that made sense as these are some of his favorite things to discuss.

Still, I was touched at the sweetness of the interaction which allowed me to see my son in a different light – as a young man with the possibility of courtship. I felt as if I was channeling my mother and grandmother when I described what, to me, was a momentous event to my friends…”It was just darling,” I gushed.

The evening passed and the moment faded into a warm memory. Until I received an email from the young lady’s mother saying that her daughter wanted to go see a movie with my son. Be still my heart! I was elated. His life is rich with family, family friends, friendly professionals, and lovely volunteers. But it is rare that he gets invited to do something socially with a good old-fashioned friend.

“I want to go,” he eagerly stated.

“Do you know how to behave like a gentleman?” I joked with him.

He assured me that yes, he did. I was giddy with anticipation of the big “date,” although my son did not like to be teased about it and of course viewed it for what it was – going to the movies with a friend, who happens to be a girl. I showed restraint around him, spilling over with excitement to my sister, father and girlfriends.

It turned out to be a lovely, uneventful outing. After their dads helped buy the tickets, the two friends sat and watched a movie while happily munching on popcorn. Truth be told, my son hogged the popcorn, his companion reported when we picked them up.

“It was just so delicious,” he sheepishly admitted.

So much for his gentlemanly behavior. He acted like a typical teenager – rather than being thoroughly annoyed by this fact, I was overjoyed. Next time we’ll spring for the jumbo tub of popcorn. I can’t wait.

 

 

 

 

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“Not Guilty”

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My husband is a very competent, caring person. While I was away on a recent trip to Israel, he managed to successfully get all four of our children off to camp. Although this is an impressive feat, let’s be real – yours truly made the fifty trips to Target and did the actual packing prior to my trip.

I called him on my last day in Israel as he was driving our son with special needs, the remaining child at home,  to sleep-away camp.

“Ben had a bad day yesterday,” he reported.

“I’m sorry,” I said.

“It’s not your fault,” he replied.

I appreciated his kindness. I felt sad that my son had a bad day and that my husband had to deal with the unpleasantness for several hours. Usually I am the one at home who has to deal with these episodes.  I am thankful he’s a hands-on dad. And that he didn’t try to make me feel bad for being away from home.

I hung up the phone and told my friends what had happened.

“I don’t feel guilty,” I explained, “I just feel badly for them.”

“What a novel concept,” one of them said, as if a light bulb had gone off over her head.

Feeling guilt, like so many other things in life, is a choice, and it is one that I don’t often choose to make.  I come by a guilt-free disposition naturally. My family doesn’t do the stereotypical “Jewish” guilt. In fact I hate when people act like guilt is part of our heritage.  Am I perfect? No. Do I make mistakes? Yes. I try to learn from them and do better the next time. Done. Let’s move on people, there is nothing to see here.

Women often feel self-centered or selfish when they do something for themselves or not with their families. I say nay-nay. In the blink of an eye my kids will be gone. I want to keep growing and enjoying life in ways that are sometimes independent of my family. I don’t want to get mired in feeling badly for what I have or have not done.

When I got home, my husband was quite proud of how he managed all of the household duties and challenges on top of his job. It reminded me of the time he came home from a business trip and my chest heaved with pride having fixed a broken toilet, as if it was a major engineering feat. We both praised each other even though I’m pretty sure each of us was secretly thinking, “Do you want a freakin’ medal?”

I returned from my trip energized. A whole week of being Susan, not someone’s wife or mother, was refreshing.

Selfish? I don’t think so. Self-preservation is more like it.

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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.

 

 

 

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Evolution of a Parent

My 15 year old son has a genetic disorder called Familial Dysautonomia.  Search it and you can learn all about this awful disease.  Ben is our 2nd child, 16 months younger than his older brother.  Since our first child was typical, it was obvious to us right away that something was wrong with our second child.

He was unable to breast feed, took forever to drink a bottle, seemed to have a lot of reflux and projectile vomiting.  At six months I took him to the emergency room because I thought he sounded horribly “junky” in his breathing.  It was during that hospital admission when it was discovered that he was aspirating when he drank a bottle.  They gave him a nasal-gastric tube, followed a few months later by a gastrostomy tube (since the aspiration had not resolved.)  After visits to many specialists, the mystery of what ailed him was discovered when Ben was one year old.  As awful as it is to get a diagnosis, it is comforting to know what is wrong and have a medical team to guide you along the way. And fortunately, one of the characteristics of people with FD is a sunny disposition when they are feeling well.  Ben is blessed with this disposition, which is an asset to our family – we get to skip the sullen teenage years with him.

I give you this background to set the stage for raising this child.  We did everything we were supposed to do: early intervention, first in our house, then in special preschool.  Speech therapy, physical therapy, occupational therapy.  Individual Education Plans (IEPs), special ed, regular ed.  Ben always seemed to be just a little behind and we worked hard to keep him as “normal” as possible. As his peers and siblings aged, the gap became more pronounced.  His limitations became more obvious.  We came to accept that Ben is probably not college bound; that hopefully he will get a high school diploma.  If not, we will still help him get a job where he can be productive and happy.

As he’s aged, Ben’s balance and gait have gotten worse.  His stamina is not great and it is difficult for him to walk long distances.  Last summer, we had him use a wheelchair for the first time.  We were in Boston on a family vacation and Ben had had one of his “crises” (a constellation of symptoms, including a very high heart rate, nausea and uncontrollable retching) that required heavy medication to put him to sleep so his body could “reset.”  He was so lethargic, he required a wheelchair at the Aquarium so we and our other 3 children were not stuck in the hotel room for the day.  Ben was thrilled and the other kids thought it was novel.  My husband and I exchanged a meaningful glance.  This was a huge milestone for us as parents of this disabled child.  It was a very public admission that he is fragile and weak and will continue to be so. Our family has to adapt to an ever changing reality.  It made us very sad, but it salvaged the day.

We decided to buy Ben his own wheelchair this past summer.  Annual visits to New York City to see Ben’s specialists, which we combine with a family trip to see the sights, led us to get the chair to avoid dragging him on an unrelenting march across Manhattan in 90 degree heat.

Recently we were in a Smithsonian Museum to see an I-Max movie.  We forgot our wheelchair but came across the ones for lending in the museum.  It occurred to me as we pushed Ben around that this was a good thing for him.  He seemed so much more engaged in the environment as he comfortably sat in the wheelchair, instead of dragging around, squatting every few steps to rest.  And because it was more pleasant for him, it was more pleasant for us.  We could enjoy his company instead of being dragged down by it.

A person can learn to accept a lot, as time goes on.  The stares of others, wondering what’s wrong with your child.  The curious questions about your son’s feeding tube.  Ben’s siblings take it all in stride.  I suppose they follow our lead, as we have always tried to be as normal a family as possible.  We had two more children after Ben, so that he would be part of a “pack.”  His siblings and our family’s circle of friends are his friends and his support system.

It’s not the family we envisioned, but it is ours and we love it….most of the time.