Laughter, new medication helping family cope with 11-year-old son’s TS

When I picked Ethan up from Nanny McPhee, as we’ve come to refer to her, she handed me our farewell note. After 18 months of watching Ethan daily, our seasoned daycare provider and mother of four – with tween-age children of her own – wrote this before our move to New Jersey:

I didn’t think we were going to make it. He was a challenge, but we made it.

Sterile and hardly worth saving, her note that I kept in Ethan’s baby box reminds me of how I resented her insinuations that Ethan was overindulged and spoiled, and that he was difficult because we gave in to him to easily.

In truth, we were meticulous with a schedule, had read all the baby books, and still couldn’t manage to live peacefully with Ethan, and she reminded me almost daily when I picked him up after work just how long he had cried or how fussy he had been.

It wasn’t until my second child was born that I realized Nanny McPhee, as judgmental as she was, had gotten something right: Ethan was needy, sensitive and impossible to console. To call him a challenging child was an understatement of epic proportions.

When we got our phone number after our move, it included three consecutive 6’s and we would joke that, at least we would remember our phone number, as it matched the mark on our son’s forehead. And whenever my husband or I asked the routine question of each other, “Did anyone call today?” one or the other would quip, “Rosemary called, she wants her baby back.”

Even today, as Ethan approaches his 11th birthday, we laugh in an attempt to make light of a serious and difficult life for our son and our family — and there is no doubt that laughter helps. Continue reading

Family learning, coping after figuring out daughter’s ‘quirks’ were TS, other disorders

By 2 years old, I knew Bean was a little different than the other kids in her playgroup.  As my first child, I had always thought she was perfect – that her many “quirks” were just a part of her very vibrant personality and not anything that were strange or unusual.

Her extreme sensitivity to clothing – especially socks, tags, seams, waistbands and coats — I attributed to her very keen senses.  After all, she had never liked to be swaddled as an infant.  She had always thrown a fit when being strapped into a car seat.

She was not able to easily eat the finger foods her friends ate. I would have to break Cheerios and Veggie Booty into what seemed like a million tiny pieces for any chance of them making it down without her gagging on them. All of this I casually thought was not unusual, and it was all just a part of what made her, well, her.

Once, when attempting to watch a popular toddler move, the storyline very much upset her.  I was told how she is the most overly sensitive child this person had ever seen.  That comment was innocent enough, but sounded like, and felt like an insult, a criticism, a comment on my parenting.  I was hurt, and confused.  Why would he say that?  My daughter is no more sensitive than other kids her age…right?  What did he see that I did not?

There were clues everywhere, invisible to me at the time.

She was very concerned with what other people, other toddlers, thought of her.  Worried about how she was perceived.  At 2 years old.  A friend did not want to hold her hand on the way into preschool one day, and it devastated her.  She worried for weeks and questioned their friendship, wondered what she had done to turn her friend away.  Her friend, of course, being two year old, promptly forgot all about it, but Bean would never forget.  I reasoned that this was just a quirk of an intelligent child who was extremely self-aware. Continue reading