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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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.

Home Base

Baseball diamond

It was so gradual, I wasn’t even aware it was happening.

My sister’s lived out of state for years. My mom died two years ago. My dad moved to Israel. His house just sold, so he came back to close the deal and empty out the final contents of the house. For the first time, he stayed with me instead of his house, which was basically empty. I realized that I had become my family’s home away from home.

I first became aware of the shift over the summer. My kids were away and my sister wanted to come home. Really, I thought? I’ve got no kids home and wasn’t looking for company. She hadn’t been home for awhile and wanted to visit the cemetery where our mother is buried. I couldn’t tell her not to come. Alas, in the new reality, I am “home” for her so I wrapped my mind around this idea, bought her beloved Diet Coke,  and told her to come. We had a great time as usual.

Now it’s my dad’s turn to stay at our house. It’s nice to have him with us – three generations living together for a month. He enjoys my children and we all enjoy having him around. He and I have lunch together most days. My husband and Dad chat over the occasional scotch. Such domestic bliss, you can’t imagine. My father looks the other way when I yell at my kids. We smile sweetly when he repeats himself. We’re practically a scene straight out of the tv show “Modern Family” – my dad being the cantankerous patriarch. I dare say he has even developed a moderate affinity for our dog.

All good things can benefit from a break though, so my Dad went to visit my sister and her family in Indianapolis, taking an early morning flight. My sister called me a few hours after he arrived. Our dad was sacked out on her couch – after all, he had been awake since four a.m.

“From my couch to yours,” I chuckled.

“How long does he usually sleep?” she asked with concern.

I felt like we were discussing a toddler instead of our paterfamilias. Fortunately he’s an active and healthy 79-year-old. It’s emotionally and physically exhausting cleaning out a house you’ve lived in for almost 40 years. He was tired.

I thought I was over the emotional part of saying goodbye to his house but apparently I wasn’t completely. The family homestead was the headquarters for our family for close to forty years. It’s a sad feeling to close that chapter of my life and a weird feeling to have the tables turned and for me to be home base. It’s a subtle shift, but a change none-the-less.

My father will leave the U.S. to return to his life in Israel next week. It’s strange for him to have given up his U.S. residence, but it’s worth it for him to be unburdened by the contents of a large home. He can visit his favorite possessions and my mother’s artwork in any of his children’s homes when he’s feeling nostalgic.

Yup, it’s a new rhythm for our family but one we are all adjusting to. There’s no place like home, wherever it may be.

 

 

Discluded

penguin-exclusion

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.

 

Ignorance Was Bliss

Wheat field and blue sky with clouds

Knowledge it is said, is power. Most of the time, this is very true. However, there are times when a little less knowledge never hurt anybody. Like knowing exactly what my teenager is up to while out with his friends. Or what hot dogs are really made of.

I didn’t want to know that my daughter has Celiac disease. She was asymptomatic and has grown like a weed. Okay, so she had the very intermittent, minor stomach pains but show me someone who doesn’t. My daughter already had one autoimmune disease – Hashimoto’s Disease (which affects a person’s thyroid function.) Thank you so much for your interest Celiac, but we’re not hiring anymore diseases, have a good day.

I only have me and my big mouth to blame. Last October, I was chatting with a close friend who is a Health & Wellness Coach and mentioned my daughter’s periodic stomachaches. My friend casually suggested that I consider cutting gluten from her diet. I raised this topic to my daughter’s endocrinologist a few days later and the whole diagnostic process was set in motion.

Nine months later after several blood tests, a visit to the gastroenterologist and a biopsy, here we are. Part of the Celiac people. It’s my daughter’s GI system, yet I feel like I’ve been punched in the gut. I know, I know – countless well meaning people have tried to console me:

  1. It’s better to have Celiac now that there are so many food options; it was much harder in the past.
  2. It is better to know when she is young (11-years-old) as it will be easier for her to change her eating habits.
  3. Knowing this young can prevent health issues in the future, like stomach cancer for instance.

I appreciate people’s kindness but the truth is, I don’t wanna deal with it. Aside from my own self-pity, I feel badly that my child has to deal with this latest diagnosis and be hyper-aware of her health and diet at such a young age.

My husband runs an association of gastroenterologists. I told him, “I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic.”

No such luck. Fortunately my daughter is being way more mature about it than I am. We held off telling her at sleep-away camp and thought we’d tell her when she came home and asked about it on our beach vacation. That didn’t happen. The days flew by, we all indulged in a gluttonous gluten-fest and she never asked about the biopsy results (which she had inquired about in a letter from camp.) Driving home from the beach, she finally asked.

“Do you really want to know?” I asked her.

She rolled her eyes and sighed. So we stopped and bought her a pony on the way home from the beach, to soften the blow of the diagnosis.

Not really. We told her we would learn about the disease together, gently dip our toe into the Celiac waters and gradually make the switch to a gluten free diet. And that’s what we’re doing.

“I think I’ll start by going gluten-free for breakfast,” she announced.

Sounds like a good plan to me. We’ve begun the trips to the grocery stores to purchase a variety of foods and snacks for her to sample.

Before she got the news about this latest auto-immune disease, my daughter remarked that if she hadn’t been diagnosed with Hashimoto’s disease, she would not have met her endocrinologist who would not have recommended the dance studio where she happily dances now. Wow – I was struck by her ability to make lemonade out of lemons.

Thank God she’s resilient. I guess it runs in our family. Let’s hope that Celiac doesn’t.

On My Watch

The-Canadian-1926-image-6

I was so excited for my eldest to return from his three-month Israel adventure, that I had not anticipated how life would change upon his return. While away, he turned eighteen, so there went the provisional driver’s license with it’s midnight curfew.  I didn’t think about the mild unease with which I would fall asleep the nights that he is out. Who knew that the sweetest sound in the world is the garage door opening, announcing that he has returned home? I don’t even care that the dog barks – it’s as if he too rejoices that the teenager is home safe and sound.

My boy left as a single fellow and returned with a girlfriend. How delightful, yet odd to see him with a significant other and to hear him use the royal “we” when talking about  he and his gal-pal.

Last week I accompanied him, probably for the last time, to the pediatrician for the annual check-up. Before I left the room for their private exam and discussion, the doctor was talking about routine shots and upcoming immunizations. I was aware that he was talking to my son, not me; his gaze had been averted to the other adult – his patient – in the room. I was just a bystander. Appropriate, yes, but I felt a little adrift as I was gently cast aside.

Then there is the other single, yet attached, man in my life – my father. I go to sleep worrying about my young man and wake up thinking about my older man. While he is in the country and nearby, I make sure to call him each morning. Living in a house full of people, I take for granted that people will know whether I have woken up or not. When he is in Israel, I am grateful for his lady friend to watch out for him.

As my father empties his house and prepares to leave his life in the U.S., all of his mail and packages are delivered to my house.

“I feel like I’m Dad’s front desk,” I told my sister.

He regularly calls to tell me which things are going to be delivered, when to expect them, and then calls to see if they came. It’s charming and amusing. He’s on my watch, and I’m happy to keep him happy.

I have to admit that sometimes I feel acutely aware of my sense of responsibility and the loss of even the illusion of control. Piled on top of taking care of the other people and things in my life, I am wound a little tighter. This month my father will return to Israel and my son will go work at a sleep away camp. I will breathe a small sigh of relief and wish them both a wonderful time as I look forward to a good night’s sleep – at least for a little while.