Aug 16

Should brothers and sisters take care of their SN sibling? Where’s the balance?

balanceA couple of weeks ago I was at an event for moms of kids with special needs. I was the facilitator of a group conversation about balancing the needs of the rest of the family with that of our neuro-behaviorally challenged kiddos.

Facilitator does not mean expert or even master of the situation, by the way. I hope I balance things out, but most of the time I feel like I’m failing miserably. No matter what my husband and I do, everything revolves around my younger son and his needs. It kind of has to. He has FASD, and because it’s brain damage caused by alcohol exposure in utero, the best interventions for him are to manage his environment so he can navigate it successfully. He can’t change, so we need to. And us changing = imbalance, sometimes. Fair doesn’t mean we all get the same thing, fair means we all get what we need. And in our house some days it seems like we’re very far from fair. One small person’s needs rule our household most days, although we have developed some work-arounds that help out a little. Continue reading

May 04

Helping Each Other

I love this blog, our Facebook page, and the book, Easy to Love But Hard to Raise because they all focus on connecting and supporting parents of children with invisible disabilities, mental illnesses, and brain-based special needs. Together, we are stronger, wiser, and hopefully a little more satisfied with this defining life experience of parenting kids who need more.

When my twin boys were first being diagnosed as toddlers a few years ago, I discovered my county support network, Parent to Parent of Whatcom County (P2P). Their free services include the emotional support of a trained Helping Parent whose parenting experiences match mine as closely as possible. They also offer hosted social and recreational events, current information on disabilities and medical conditions, and referrals to community resources.

The first essay I wrote about life as an ETL parent eventually appeared in my local P2P newsletter. A couple of years later, a different form of that essay now appears in our beloved Easy to Love But Hard to Raise. I feel as if my experience with P2P is coming full circle. Later this month, I will host a reading and support meeting for the group, the book is being considered for a new Parent Support Book Club they’re developing, and I’m considering becoming a Helping Parent myself.

A couple of weeks ago, our family attended a free P2P-only ice skating event. My boys had been asking for months to go for their first try, but I’d been avoiding it. I didn’t want to deal with public meltdowns and crowds of people that don’t understand us. But with P2P, our experience went far better than I expected, the kids had a positive first experience, and we were surrounded by people who “get it.”

Barbara Claypole White has blogged here before about whether or not to join a support group, and in the end, it’s a personal decision that has to work for you, in your circumstances, in your own life. For my family, P2P has been exactly what we needed. Barbara said it well when she wrote, “Finding the right group—or stumbling into it in my case—is a blessing. We may cry in the middle of sessions, but by the end we’re laughing. And if you can laugh at least once during a day of parenting an obsessive-compulsive child, you’re a momma who can keep on truckin’.”

If you need the support of others near your community, Parent to Parent USA has local chapters throughout the country that just might be a good fit. Check ‘em out, and please, keep on truckin’.

Jan 09

An Unfinished Essay (That Needs a Happy Ending)

 

Aaron & Natalie at their cousin's wedding, June 2011

 

Even though I co-edited the book Easy to Love but Hard to Raise, and thus had an “in” as far as having a piece accepted, I didn’t submit an essay for inclusion in the book. I started to write an essay, but I never finished it. One reason was that I was too busy editing other people’s essays to have time to work on mine. Believe me, that was a valid reason.  But I also got caught up in not knowing how my essay should end. Maybe that’s because the real-life saga at the heart of my essay is still very much a work in progress, a sad fact that became all too clear last Sunday night.

A situation developed that led my 15-year-old neurotypical son, Aaron, to express feelings of hurt and resentment about how he’s treated by his dad and me, in comparison with his sister, Natalie, our 11-year-old who has ADHD and comorbid conditions.

Continue reading