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.

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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.

 

Independence Day

petoskey-fireworks

I am about to embark on another 8-day women’s trip to Israel. The purpose is to empower women to change the world through Jewish values that transform ourselves, our families, and our communities. Sounds great, right? No matter where you live, if you are a Jewish woman (or man – they offer men’s trips too) or are raising your children Jewish there may be a trip that you too can take – check out the website at http://www.jwrp.org and see for yourself.

What a treat to travel for 8 days on my own. Actually I will be with 11 other fabulous women from my local Jewish Community Center and we will be part of a larger group of 200 women from around the country and the world. I look forward to being able to think and act independently, without being someone’s wife, mother or daughter. I only have to follow the planned itinerary. I don’t have to worry about what my kids will or will not eat, if they’re tired or cranky. It’s a way to rediscover my own person-hood through a Jewish lens – what a novelty!

It’s a great time for me to go because two of my children are away at camp and two will be home in day camp. What a great way for my family to exercise their own independence, without big Mama running the show. Papa Bear will be in charge, in whom I have complete confidence. He will drive, shop for food, make the lunches, deal with the medication, go to the end-of-camp dance performance all while being way more fun than cranky old Mom.

One of the biggest gifts of leaving the kids with my husband, besides the obvious awesome trip experience, is that other than leaving one page of phone numbers and reminders, I do not have to leave detailed instructions. My hubby is engaged in all parts of our life so I don’t need to school him on what goes on around here while he’s at work. Okay, I do feel a teensy need to tell him that I will organize things to make it as easy for him as possible – after all, he will be working in between driving to and from camp.

“Really?” he said, “Do we have to do this dance where you try to convince me that it’s all going to be great fun? It is what it is. It will be fine. Go, lead your group, and have fun.”

Lesson learned. I will shut up and plan the best I can. He will deal with whatever comes up. He can help my daughter shop for whatever costumes she may need for her dance recital. He will rise each morning at 4:30 am to medicate our son with special needs, through his feeding tube, while he sleeps. He will write the children who are away at camp.

Let’s not forget the children’s independence here. When I tell some people my children will be at sleep-away camp all summer, I occasionally get a look of pity or horror – surely I must be an awful mother to send my children away. They love camp because they get to be their own person, independent of their parents. There is no one to nag them about how to act or what to wear. Sure, they have counselors but they care much less about the minutiae of life than a mother does.

Take for instance my fourteen-year-old son who left a week ago. I am loathe to look at the camp website to catch a glimpse of my precious child, but I briefly succumbed to peer pressure to take a peek. As expected, my son looked adorable and happy. It’s his fourth year and he asked to go for the whole summer – of course he’s happy. But does he have to wear that dorky camouflage hat that he pilfered from his brother? To make it worse, in my next email to him I felt the need to suggest that he not wear it all the time as it doesn’t really match any of his clothes and he looks super cute without it. I can’t believe I’m even admitting that I did that. Shame on me…leave the child to wear whatever he damn well pleases without me spying on him.

I told the children who will be home with their Dad that I care about three things, and in this order: the people in the house, the dog, and my potted outdoor plants. I trust them to help each other, feed the dog, and water the plants. Mostly they just need to take care of themselves. Yet another life lesson I’m imparting in my joyful absence.

So here’s to a happy independence day to all of you – in between barbecues and pool hopping, try and let a little personal freedom ring. I promise you’ll see fireworks.

A Glimmer of Hope

glimmer-of-hope1

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.

 

 

 

 

“It’s Appropriate”

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Has this ever happened to you? One of your children is watching something on a screen that seems questionable to you. You ask if it is appropriate for them. They assure you that, yes, it is appropriate.

“Oh. Okay,” you say.

You know they say this because they want you to go away and leave them in peace. You want the same thing, so you choose to believe them because sometimes you don’t feel like taking the time to investigate if it’s truly appropriate. Sure – I can count on my child to know what’s appropriate and what’s not, can’t I? The kids and I would agree on certain things that are clearly not appropriate, such as highly sexual content or gory violence – they wouldn’t want to watch these things anyway (not yet, at least.) It’s all the other things (like bad language, mature themes, silly reality shows) where the line is not always so clear.

Sometimes things are inappropriate but in the opposite direction – not mature enough. Take for instance my 16-year-old son with special needs. He has a penchant for watching shows that some might say are too young for him. I used to tell him he is too old to watch these shows.

“But I like them,” he told me.

Sigh. He likes them. Who am I to force him to watch shows that he doesn’t really get or enjoy, just because they are more age appropriate? For me, there’s a fine line between expecting him to act his age and allowing him to be how God made him. Where is the perfect balance? I’m always looking for it.

My daughter recently reported that this brother was watching “Family Guy.” Oh good, my husband and I thought – that’s semi-appropriate for a teenage boy. Then she told us that it was really a cover for him to watch a children’s show on the computer – he too clearly understands the whole “It’s Appropriate” game. Too bad this cognitive ability doesn’t actually transfer to age-appropriate television for him, but oh well. He did participate in a recent “Simpsons”-fest with his cousins, keeping him somewhat in the adolescent TV loop.

My daughter chastised me for allowing her brother to watch “baby” shows.

“Really? Do I need a critique of my parenting from you?” I asked.

Let me just say that she loves “Dance Moms” and God-knows what other shows that some may say are inappropriate for an 11-year-old girl. It’s amusing to me that my youngest thinks she is the maven of appropriate material. When she was nine she picked the song “Mean” by Taylor Swift to sing in a recital. It’s a great song. We both thought the tune was catchy but neither of us paid much attention to the words. I just thought she was so adorable. As I sat there watching her, I realized the song is about an abusive relationship and my stomach dropped to my toes.

Maybe not my best call in this grey area we call parenting, but the world didn’t come to an end. The video of her singing still makes me smile to this day. Is that really so inappropriate?