Expectations

I don’t typically spend time in Fetal Alcohol Spectrum Disorder support groups on Facebook. Mainly because catching a glimpse of what life could be in 10 years for a child with an FASD is depressing, especially when looked at outside of the context of our individual lives. Separated from known success factors, such as a mom and a dad and a stable home, the statistics are dismal. Many kids don’t graduate high school. Many kids are in jail. Many kids abuse substances. And many commit suicide. Even with known success factors, kids with an FASD are likely to have very difficult teen years, develop co-diagnoses such as borderline personality disorder and depression, need psychiatric care and spend time in group homes, for their safety and that of those that love them, etc. It’s a rough road to say the least.

I’m not one to bury my head in the sand and pretend the risks don’t exist, but I’m also not one to give in to pragmatism or fatalism and believe whatever will be will be. So, I pray. And I trust that the Lord has a plan for Zeke, just as he has a plan for me, my husband, our girls. And that plan is good.

But every once in awhile I venture in the Facebook support world and spend an hour or so learning about the struggles of other families, some of whom are much like our own and some who are vastly different. Typically, my heart hurts by the end of that time and I come away discouraged and somewhat depressed. But other times, like the other day, I leave those conversations with a keen understanding of the unfairness of it all. Oh, my heart hurt too, but it hurt because of what wasn’t being said, rather than what was.

A mom in this group shared about how her best friends are no longer speaking to her and how it was all her daughter’s fault. Her daughter is 10 and on the FASD spectrum. The mom said that her daughter is on medication, but she has done really well in school without any supports and doesn’t need therapy, though she does, admittedly, often “take things too far” in conversations with her friends. The mom shared that the dad of one of these friends finally had enough and said his child couldn’t play with her anymore, and his other child couldn’t play with this girl’s sibling, all because this 10 year old girl with FASD continued to say things that were inappropriate.

The mom was heartbroken and grieving the fact that her daughter isn’t “normal”, which is something all parents of special needs kids grieve over and over and over again. But what concerned me wasn’t her understandable emotional state, but rather the feedback she received. She was told she needs to teach her daughter the hard life lesson that her actions have consequences (true) and let her know this situation was all her fault (not true). She needs to let her daughter live with that. To know that it was her words that ruined the friendship between these families. That she needs to change her behavior before something like this happens again.

Keep in mind that this child is 10. Keep in mind that kids with FASDs function on a social and emotional level that is about half their chronological age, so functionally, in this very social and emotional situation, she’s 5. Keep in mind that this mom didn’t feel the need to supervise any of her interactions with friends, because her daughter did just fine in school. And then there are the unknowns. Did the parents talk about their daughter’s FASD with their friends? Did those friends talk with their kids about the differences in behavior in kids with FASDs? It didn’t sound like it from what was written in this post, but I don’t know.

What I do know is that this mom was expecting too much out of a child who could not possibly live up to such requirements. And the mom was frustrated and the daughter was no doubt devastated. And a friendship was destroyed. All things that could have possibly been avoided and I’d argue should have been avoided, by providing supports along the way and not placing a child in a situation in which she was bound to fail.

But how often do we do just that? Put our kids in situations they’re sure to fail? Especially in our culture, especially before our new normal the past several months? We put our babies in daycare or send them to the sitter and complain they’re crabby and clingy when they get home. We put our older kids in multiple after school activities and wonder why their siblings who have been shuffled to and fro are whining, refusing to eat on schedule and won’t sleep at night. We wonder why those older kids are snarky or sullen or outright awful after weeks of school and sports and homework. I’ve done it. You’ve done it. We’re all clueless from time to time.

But special needs kids do not, typically, function like typical kids. They have needs. Sometimes many needs. And they require our time, our planning, our creativity, our patience. our oversight, our very selves. And sometimes, that’s not so easy to give. But if we want our kids to succeed, we have to be willing to sacrifice and we have to be willing to lay aside what we have dreamed up for our family, our children, our friend groups, in order to serve them and their needs.

I left that Facebook thread before I was tempted to share my thoughts on that mom’s post. But what I would have said is this:

“I’m sorry you’re sad. I know what it’s like to be where you are right now. I know what it’s like to know my child isn’t “normal”. To know he/she never will be “normal”. I know what it’s like to grieve. Learn to work through those feelings, because they will come around again. And again and again. But please don’t put the blame for this on your daughter. It’s not her fault. She is the one with the static brain injury. She is the one with the disability due to her birth mom drinking alcohol while pregnant. Take all that you know about Fetal Alcohol Spectrum Disorder when she says things that are inappropriate, and then lovingly come along side her to teach her why those words are hurtful or wrong. And teach her again. And teach her again.

When you meet new people, be honest. Talk to them about your daughter’s disability. Help them to understand she looks just like her peers, but her brain is vastly different. Help them see how uniquely talented she is, how smart she is, how beautiful she is on the inside and out, but different all the same. Ask them to talk to their kids about what a gift such friends can be and how to love people who aren’t the same as everyone else.

Yes, there are consequences to her actions and she needs to learn them. But she needs to learn them from you, in small things, before she has to learn them from others in big things. So give her the supports she needs. She may do just fine on medication, but if she’s on medication, she has needs. Give her the tools to succeed. Give her therapies or a counselor that can help her develop the skills needed to be a good friend. But don’t let her go that road on her own. Be there for her as she forges those new friendships. Supervise her conversations and interactions, until you both feel confident she can go the world alone. It may be 5 years from now, it may be 10. But time isn’t important. Your love and support for your daughter is what matters and what will make the biggest difference in the end.”

Our son is just 8 years old, but I know a lot about grief so far and I’m sure I’ll learn more as he grows. Truthfully, our son doesn’t have many friends his age and his classmates do not truly understand him. But he does have one really good playmate whose parents love him for who he is. And the adult “friends” in his life and our family members do as well. Yes, we’ve experienced what it’s like to be shunned and what it’s like to simply be tolerated, but we’ve also experienced true inclusion, and a tremendous amount of love and support. For all of it, I am grateful.

Like many parents, I also know a lot about unrealistic expectations and have had to repent of my words and actions more times than I’d like to admit. But from those sins has come the gift of knowing a lot about God’s blessings in the midst of my grief and failed parenting moments. Praise God from whom all blessings flow. Blessings of special needs kids. Blessings of those who come along side us to love us and love them. And the blessing of God’s forgiveness when we selfishly expect more out of them than they’re able to give.