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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Parenting 201

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It’s official, I now have four teenaged children. I have completed Parenting 101 in the unofficial course book, where I was the director of my children (unfortunately my grade won’t be in for a couple of decades, but I think I passed.) I am now enrolled in the more advanced Parenting 201. I have become more of a supervisor than a director, allowing my children to become more independent as they learn to navigate the world from the safety of home base. Instead of identifying the goal and telling them the steps to get there, now they know the goal but they have more freedom to determine the path to achieve it. Just as they are learning new skills and flexing their decision making muscles, I have learned a few things too as I move through the ranks of my children.

My eldest will turn twenty in April. He is away at college where he is “undecided” in his major while being very “decided” about his fraternity participation. While this imbalance causes me slight agitation, I take comfort that we share the same goal of graduation and employment so I am confident in his ability to get there. I keep myself in check and don’t nag him even if he doesn’t do things exactly how I might. He is well aware of his many friends who came to college with specific majors; he has his own stress about deciding what his focus will be. I don’t need to pile on to his stress so I choose instead to be supportive and helpful when asked. A consultant, if you will.

Number Two son is a whole other ball of wax. He has a genetic disease which affects his health and intellectual/emotional rigor. He recently became 18 so we obtained guardianship in order to help him make decisions that are in his best interest. I try hard to encourage him to think for himself and be as independent as possible. We recently made the decision to keep him in our county school system until he is 21 so he can continue to gain skills that will help him become employed. Fortunately he is extremely pleasant and sweet; he trusts my husband and I completely to help him plan his future. If I think about it too much I am overwhelmed with this responsibility but my husband and I plug along, including him in our thinking and planning as appropriate. It is hard for many kids to visualize their futures, whether they have typical needs or special needs. As parents we just have to use the right approach to help them as they ease across the threshold to adulthood.

My third teenager will be 16 next month. He is learning how to drive and settling into his high school studying habits. One thing that I’ve learned is that occasionally a supervisor has to step in and take a more hands on role. He has some acne like one of his older brothers; I was a compliant mother of the dermatology patient with my older son, trying less invasive treatments which where only marginally successful. With this son I knew to be an aggressive advocate and start the big guns early – a 6 month oral medication, with monthly lab draws. When I told big brother what we were doing, he gave me a little gift of validation by telling me, “I regret not doing that.” My 15 year old was unaware of this option and would have lived with bad acne had I not acted. I didn’t want him to regret not having done something about it. Let him get on the therapist’s couch for something else I will screw up.  Whether it has to do with my parenting or not, he is confident and resilient, demonstrated by running for a youth group board position recently after losing two times previously. My protective mother instinct thought, “Why risk losing again?” Good thing I didn’t interject my concerns, as he won. I do not micromanage my kids’ lives. It’s their life, not mine.

The final teen is my baby girl who is 13. She has not turned into a surly adolescent yet. She is a solid student and a dancer. She has her own fashion sense, which I respect, and only weigh in on things like age-appropriateness and modesty. She pushes back a little but is mostly respectful of my input. She is fearful of things she finds “creepy,” like some odd neighbors who recently moved away and our new President. She recently asked to be excused from the dinner table when we were discussing the upcoming Inauguration as it causes her to feel anxious. While I can shield her from too much information, I want her to be informed enough, feel empowered to tolerate uncomfortable feelings and be her own advocate for things she feels strongly about.

I may not like every decision my kids make but I tell them I am always their number one fan. I find myself missing my mother, who died three years ago. I wonder how she managed our teen years. Thankfully I have my husband, sister and girlfriends to discuss the trials and tribulations of raising teenagers. They provide a non-judgmental sounding board off of which I can bounce my stories and concerns.

After the teenage years I have the dating and marriage fun to look forward to – Parenting 301 – clearly a graduate level course.

 

 

Navigating with Grace

If you’re tired of reading my essays, take a listen to this interview I did with Jana Panarites on her podcast, Agewyz, where she gives voice to the struggles of caregivers. After all, we all are, have been or will be caregivers at some point in our lives. I hope you’ll take the time to listen and share with others. Maybe you would like to share your story with Jana too? Click HERE to listen.

Better Late Than Never

There are many things parents teach their children—toilet-training, personal hygiene, shopping, food preparation, shoe-tying, bike-riding, and swimming to name a few. I have had the pleasure of teaching one of my children to feed himself through his gastrostomy tube.

This 17-year-old son, the second of my four children, was born with a Jewish genetic disorder called Familial Dysautonomia (http://www.familialdysautonomia.org/facts.htm). He walks, talks, and is cognitively with it, but he is medically and physically fragile. He eats some food by mouth, but gets much of his nutrition through a gastrostomy tube in his stomach.

He was diagnosed with this disease when he was 1-year-old, but he had feeding trouble from birth. A g-tube was placed at 6 months, once the doctors figured out that the formula from a bottle often went into his lungs instead of his stomach. Speech therapists encouraged us to feed him by mouth in the hopes that the tube would be temporary. As desperate young parents, we spent hours and hours feeding our son by mouth although he was often uninterested and somewhat averse. We had one other child at the time who was only 16 months older. We were discouraged but accepted the tube feedings as part of our life, at least for the short term.

While it was hard to accept this fate, it was much quicker and efficient to tube-feed him. Sure, we still had to feed him several times a day, but it only took a few minutes each time. We grew accustomed to the stares and questions from curious people. We just wanted to feed our kid and hoped that he would continue to grow and be “normal.”

Like many parenting tasks, the feedings soon turned to drudgery and felt like a chain around our necks. Every couple of hours we had to drop what we were doing and spend a few minutes feeding our son. Yes, we had to feed his siblings as well, but with them we could put the food in front of them and walk away. The feeding tube felt more like a tether as we had to stand there and pour the liquid into the syringe, connected to the tube that went into his stomach.

As he got older he could at least hold the syringe so we could dash around feeding the other kids and return frequently to pour more formula into the syringe. But that too became cumbersome. What to do? How could I make my son more independent with this task?

Perhaps divine intervention led me to find a funnel underneath a sink in a newly renovated bathroom in my home. Hmmm, what the heck was this? Some piece left over by the plumber? A light bulb went on over my head, as I could envision this funnel sitting in my son’s feeding syringe, giving him a wider opening into which he could pour the formula, given his less than optimal gross and fine motor skills. It’s not called the “mother” of invention for nothing.

He resisted the idea at first but quickly got the hang of it. Freedom, at last! And the funnel? Turns out it was meant to fill the soap dispenser that is built into the counter-top. You can imagine the reaction I got when I called Kohler to order 12 of them!

So maybe we were remiss in teaching our son some of the other self-care skills. He can’t ride a bike, but not for lack of trying. He’s safe and comfortable in the pool, but he can’t actually swim strokes—again, not for lack of lessons. Those things weren’t in the cards that God dealt him.

But he did recently reach a momentous milestone. He learned to tie his shoes. We have tried to teach him over the years without success. His frustration, and ours, was too great with the return benefit just not seeming worth it. Sure, I knew he was too old for his mom to still be tying his shoes, but somehow it just didn’t make it to the top of the “things to worry about” list. His health is always number one.

Recently I took my son along with my 11-year-old daughter who wanted to get a new pair of Converse All Star sneakers. While at the store, he decided that he would like a pair as well. Given that he rarely shows any interest in fashion I happily agreed to buy them for him. He was very pleased with his new shoes, which inspired me to raise the dreaded issue of shoe-tying. We tried the bunny ears technique first which was too cumbersome. Somehow, when I showed him exactly how I tied my shoes, it clicked and his fingers were able to do what his brain told them to!

He is super proud of his new skill as he walks around in his new Chuck Taylor’s. And as his mom, I couldn’t be happier. Better late than never.

 

Discluded

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The topic of inclusion for people with special needs has been on my mind lately. In particular, I’m focused on my seventeen-year-old son who recently auditioned and was selected to be in a two-year conservatory program for students with cognitive and/or developmental disabilities. It was a group audition with a one minute solo opportunity of the actor’s choice. Our son told a brief story about his beach vacation, complete with his amazingly good animal imitations. I wasn’t there, but I can only imagine that he brought down the house.

To be included, or not to be included? That is the question.

It is especially pertinent to the parent of a child with special needs. My son has a genetic disease, Familial Dysautonomia. He walks and talks, but his balance and gait are not great. He has a feeding tube, through which he can feed himself and he also eats by mouth. He has no behavior problems and is sweet with an innocent personality. We encourage him to be as independent as possible.

I recall a holiday dinner with friends a few years ago when my then eight-year-old daughter and her friend came to complain to the adults that the big kids weren’t playing with them.

“They’re discluding us,” they announced to our amusement. We did what adults do – told the big kids to be nice and tried to persuade the little ones to give them some space.

But really, must everyone be together all the time? Sometimes I like to hang out with people like me, sometimes I don’t.

When my disabled son was younger, I was very focused on inclusion and mainstreaming. I was so hopeful that he would fit in, make friends, and lead a typical life. Why shouldn’t my child be included? I was his advocate and tried so hard to focus on the parts of him that were like everyone else, rather than the things that made him different. He goes to a large public high school where he is mainstreamed and manages amazingly well with a lot of loving support.

As he’s gotten older, however, my acceptance of his differences has evolved. I can embrace the wacky, fun, quirky things about him. When he aged out of day camp and their wonderful inclusion program, the next option within the camp was with a self-contained group of disabled kids. At first I bristled at the idea of him being with a group of disabled kids – what about typical peers and role models? But, I had no other options, the camp had been great for my son since he was three-years-old, and it was better than him spending the summer playing video games in my basement.  We decided to give it a try.

I learned that my son didn’t mind being in the group at all – in fact he liked it. Even if I perceived that he was higher functioning than many of the other kids, he enjoyed making his friends laugh, helping out and hanging out with the counselors. It was the beginning of my being able to watch him move into and out of inclusion with fluidity and grace.

The campers went on a field trip to an improv place. The counselors told me my son loved it, which gave me the idea to pursue a theater class. While the theater program offers both inclusion and self-contained classes, we opted for the self-contained ones since he had no previous “training.” He took two classes last year. We went to the end of the semester observation. My husband felt that our son seemed so different than the other kids. I, on the other hand, saw him as belonging in the group and was so happy to see him shine. Apparently, inclusion is in the eye of the beholder.

I am thrilled that my son has this opportunity to learn some new skills, have fun, make friends, and be part of another nurturing community. As Shakespeare said, “All the world’s a stage, And all the men and women merely players.” These kids hit their marks, sing mostly on cue, and exit stage right and stage left, albeit slowly. They may have different abilities, but their performances are no less sweet.

 

A Pleasant Surprise

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We drove our remaining child at home to his sleepaway camp last week, five hours from home. The first few hours were pleasant but around the halfway point it turned into a tense drive. Our 16-year-old son with Familial Dysautonomia, a genetic disease, had one of his episodes where he feels nauseous and retches to the point where he needs medication to stop it. The medicine helps him to sleep so his body can reset.

As he rested in the backseat, my husband and I were each in our own head, hating our son’s disease and the extra stress it adds to our lives. One minute, we were on the verge of dropping him off for twelve days, anticipating a festive trek to New York City before returning home. The next, we each wondered silently if our son would be okay for the drop-off. Fortunately he drifted off to sleep so we were relieved and optimistic that the day, and our vacation, would be salvaged.

I suggested to my husband that we make a pit-stop before getting to camp so upon arrival I would be calm instead of frantically looking for a restroom. It was a cloudy day with a bit of drizzling rain. We pulled off the road at a dismal looking gas station, wondering if they even had a bathroom as the building was so small and we didn’t see any bathroom doors on the outside.

It had been a long drive so I forged ahead. I walked through a tiny market and found there was a clearly marked “Womens” bathroom on the right and a “Mens” on the left. Channeling Julia Louis-Dreyfuss (Elaine) from the airplane episode of Seinfeld, I steeled myself and tentatively pushed open the bathroom door. Instead of the usual dirty, smelly, disgusting public bathroom, I walked into Nirvana – a brightly lit oasis of loveliness. Was I in the Twilight Zone? There were two stalls, and a counter with two sinks. A granite counter, or something that looked like granite. The whole room was extremely clean, almost as if I were in someone’s home who had cleaned especially for company. There were decorations and a sign saying “With God’s Help, Anything is Possible.” Even a clean, gas-station bathroom apparently.

The joy and gratitude I felt was immense. I almost did not want to leave my little slice of paradise, but life was outside that door waiting for me. Giddily, I asked my husband if he had as pleasant a bathroom experience as I had. He said it was the nicest gas station bathroom he too had ever been in. In the men’s bathroom there were antique car parts, highly polished and displayed as artwork on the walls, with plaques underneath them noting what make, model, and what part of the car it came from. We picked up drinks and were rung up by a man we assumed to be the owner. I gushed over his lovely bathroom and thanked him for his efforts. He modestly thanked us and wondered why most other gas stations don’t take the time to keep their bathrooms in decent shape.

This man’s establishment gets the gold-medal of gas station cleanliness in my book. For the rest of the trip, that bathroom became the benchmark against which all other bathrooms were measured, possibly going forward for the rest of my life.

I was in a bad way—tired, worried about my son and hoping my vacation wouldn’t be ruined. This pit-stop in rural New York was a beacon of kindness and caring that I apparently needed at just that moment. Its fresh scent, cleanliness and bounty of toilet paper, soap and paper towels gave me a big cosmic hug, restoring my faith that people are kind and considerate. This was the trip’s highlight, and we hadn’t even made it to Manhattan yet. Start spreading the news.