Hopeless and Helpless

Dear Jewish Fairy Godmother:

My 13-year old son has a very disruptive syndrome called POTS. You
can Google it but assume headaches, weakness, food issues, nausea,
exercise intolerance, temperature sensitivity (in both directions), heart
palpitations…the list is long It has disrupted his life for years but we
finally have a diagnosis. He is doing poorly at school, in part after
missing a few weeks after a bad fall. We tried a tutor (a retired high-
school teacher) but they did not get along. We are at our wit’s end and
are thinking of hiring a nanny. Money is not an issue, at least for the
next year or two till we get him stabilized and past what we fear might
be such low-self-esteem that he could become suicidal. Where do we
start? What do we need to in order to find the right person?

Hopeless and Helpless

Dear Hopeless:

You start by using a word other than nanny, because no 13-year old
male wants to be infantilized, regardless of his health needs. Tutor,
Buddy, Helper…find a word he can handle. Then summarize the
situation in a short document so that when you talk to people they
have answers to the questions anyone would want to about.
Re your son: What’s his personality like? What types of people does he
relate well/badly with? Does he have behavioral issues? If yes, what
sets him off/brings him back? How does he respond to authority? Does
he think he needs help? How does he relate to his condition? What is
his emotional state now? Is he in counseling? What is his medical
prognosis? Any idea if puberty makes it worse or better? Does he have
friends, peer group, girlfriend, etc? Does he have hobbies, interests,
focal points for engagement other than school? What subjects does he
need the most help in? Will he be in summer school?


Re the helper: What hours? Weekdays/weekends? What pay per hour?
Tutoring expectations and expertise? Subject area needs? Medical
training (even just first aid) and/or knowledge re timing/interventions?
Or just as simple as eat/drink now? Location? Car required? Mileage?
Additional useful skills?

I like the idea of a team approach. Have someone (perhaps you but
not necessarily) be a team lead and get your son engaged in the
process. You don’t want him to think he’s having an actual nanny.
Rather a cluster of supports, some slightly older role
models/tutors/college-aged, and also others to engage him in new
activities that will support self esteem (perhaps art or music?) and
even organize activities he can bring a buddy or two along on so he
feels less “different.” This a long-run challenge. I’m glad you have the
resources to help him.