Not Always Happy by Kari Wagner-Peck

51sHRGqjqXL._SX331_BO1,204,203,200_Not Always Happy

by Kari Wagner-Peck

I stopped reading memoirs about raising a child with Down syndrome awhile back mainly, I think, because they all started seeming the same.  Most follow a fairly predictable trajectory: a child is born with Down syndrome, there is much grief, then acceptance, and finally celebration.  It’s not that there is anything wrong with this storyline (which, if I’m honest, fits my own storyline with regard to having my own child with Down syndrome), it’s just that after a time, I had read enough of them.  So when I saw mention of Not Always Happy – probably on Facebook, I can’t really remember for sure – and that it was funny, my interest was piqued.

Not Always Happy does stand apart.  Its subtitle, An Unusual Parenting Journey, is a true description not only in that parenting an atypical kid is bound to be somewhat atypical in itself, but because Wagner-Peck and her husband’s parenting journey has been atypical even in the context of raising a child with Down syndrome.  Also, this memoir isn’t the typical grief-acceptance-celebration storyline.

Wagner-Peck and her husband married a little later in life.  She was already in her mid-forties.  They wanted children – or a child – but decided to forego fertility intervention and set their sights on adoption.  They wanted a “typical” child on the young side.

“We felt we had made it quit clear the biggest disability we were capable of coping with was a child who was left-handed or color-blind.”

But when they get a call that a two-year old boy with Down syndrome is available through the state foster system, after an initial, brief hesistation, they decide that this boy is meant to be their son.  The more they learn about Thorin, they more they fall head over heels for him.

After a long and somewhat harrowing foster-with-the-hope-of-adopting process, during which it remained unclear if Thorin’s biological mother would relinquish her parental rights, Kari and Ward become Thorin’s adoptive parents.  Over the course of the next few years, they deal with Thorin’s health issues, behavior issues, and attachment issues, slowly but surely becoming a cohesive family.

Much of the story revolves around their experiences with schools, teachers and other staff as they attempt to make sure Thorin’s educational needs and rights are met.  So many of their experiences mirrored our family’s with respect to our son Finn’s schooling.  Reading the pages on which Kari recounts battles, demoralizing IEP meetings, scornful teachers, baldfaced lies by school district staff, and repeatedly coming up against brick walls in trying to get one’s child’s needs and rights met – my blood boiled at my own memories.  Eventually, the Wagner-Pecks pull Thorin out of school to homeschool him, which is also what we eventually did with Finn.

In one segment, Wagner-Peck recounts how she worried about how to tell Thorin that he has Down syndrome.  As I read this, I felt a twinge of recognition – I knew where this was going.  As I kept reading, my heart started pounding and I wondered, “Am I going to see my name written on these pages?”  Then she recounts how she sat Thorin down and impulsively told him that he has a superpower called Down syndrome, and how she recounted that conversation in an article for HuffPo, and how some people gave her crap for it.  I was one of those people; I remember reading her HuffPo article and responding to it with a blog post, which, if I recall correctly, she commented on.  When I bought her book, I didn’t remember her name as the woman who wrote that HuffPo article.

In any case, I really enjoyed her book.  Unfailingly honest, written with plenty of humor, heartfelt without being saccharine, I think every parent should read this to understand, if nothing else, some of the hell we parents of atypical kids go through at the hands of institutions that are supposed to serve our children.

Supporting Positive Behavior in Children and Teens with Down Syndrome by David Stein, Psy.D.

51tfcynwrslSupporting Positive Behavior in Children and Teens with Down Syndrome

by David Stein, Psy.D.

I came across this book purely by chance when I saw a friend post a photo of it on Instagram.  The title struck me, and I immediately ordered a copy from Amazon.

I’ll start by saying that we have dealt with behavior issues with Finn, our 8-year old son with Ds, for a long time.  Without going into a lot of detail, because this probably isn’t the best forum for that, I will say that the negative behaviors he often exhibits range from mildly annoying to disruptive and obnoxious, to sometimes harmful, and they’ve impacted our family in various big and small ways.  As time has gone on, I have found myself more and more frustrated and disheartened.  I’ve also felt pretty isolated, as it’s difficult to talk openly about your child’s behavior challenges in what is a climate of competitive and judgmental parenting, and when there is already stigma attached to your child because he or she is disabled, it’s even more difficult to talk about.  I have felt isolated even among other parents of kids with Ds or other disabilities who only seem to talk about their kids’ achievements and sunny dispositions.  What’s wrong with my kid that he’s so obnoxious and uncooperative so much of the time?  What’s wrong with me as a parent?  These questions play on a loop in my head.

Supporting Positive Behavior in Children and Teens with Down Syndrome has managed to allay some of the feelings of isolation, and it’s helped me to understand where Finn’s negative behaviors come from, and how to effectively minimize them.  It boils down to one basic, common sense fact, and that is that the more attention that is given in reaction to a behavior, the more that behavior will likely be reinforced.  The key is to determine which behaviors are harmful or destructive, and respond to those swiftly but unemotionally, and ignore the rest.  This doesn’t mean “letting them get away with it”; it means, taking away the motivation (most often, attention seeking) to engage in those behaviors.  Other important strategies outlined by Dr. Stein include the use of “token economies,” picture charts of expected behaviors (because kids with Ds are typically a lot stronger visual learners than verbal), and social stories – in other words, building incentives and motivation (like positive attention) into behaviors we want to see more of.

Of course, none of this is really brand new stuff, and to some degree, it’s effective behavior management for all kids, neurotypical or not.  I’ve always known on some level that reacting strongly to negative behavior in any of my kids doesn’t tend to do much good – it just lets me blow off steam.  But seeing all of this written out in a logical and compassionate way has been very eye-opening.  And it’s also helped to read that the behaviors Finn exhibits are extremely common in kids with Ds – so I’m not alone.

As I was reading this book – which at just over 130 pages isn’t long or overwhelming – we had a few family pow-wows to talk about strategies we can all use to encourage more positive behavior from Finn.  Finn’s siblings are totally on board, and we’ve all been making a great deal of effort to see Finn’s behaviors in a different light and respond to them more thoughtfully.  We are already seeing changes.  Finn in some ways seems to be onto us; he’s not getting the strong reactions he’s used to, so he’s upping the ante in some ways by behaving even more obnoxiously in an effort to get a reaction.  However, these episodes seem to be petering out a lot quicker without our reactions to fuel them.

I wish I had had this book a long time ago (although it was only published in 2016).  I wish Finn’s “team” had had this book when he was still in school.  I encourage anyone who is a parent, teacher, or caregiver to a child with Down syndrome to read this book.