This is the speech I gave to welcome everyone to the Happy Mama Conference and Retreat, held a couple of weeks ago in Conover, NC. We had an amazing time and we will definitely be doing it again. I’m sharing the welcome speech on the blog because I think it will resonate with all our readers. Remember, you are not alone.
I’m Adrienne Ehlert Bashista. Some of you might know me from our group blog and book: Easy to Love but Hard to Raise, or through the Facebook page connected to it, or through A Mom’s View of ADHD blog or Facebook page, or some of you might not know me at all.
I have a 10 year old son who has fetal alcohol spectrum disorder, or FASD. I’m not going to talk that much about FASD except to say that it’s a brain-based disorder that manifests itself behaviorally. It’s a physical disability because it is based in his body, but it’s in the part of the body we don’t see, the brain, but the part of the body that has the greatest impact on his behavior, his learning, his ability to get along in the world, and his relationship with his family and anyone else he meets.
Our path to getting our son the correct diagnosis was a loooooong one. His first diagnosis was ADHD, followed by ODD, mood disorder, pervasive developmental disorder, pediatric bipolar, then we found out he has borderline intelligence and finally, after 4 psychiatrists, 3 therapists, 2 family practice doctors, 3 OTs. 1 speech therapist we found the diagnosis that made sense.
For everyone in this room who’s had to struggle to find a diagnosis, whose had to trust her gut more than the experts, who’s taken their kid to very well-meaning, kind, but ultimately ineffective people, who’ve largely blamed yourself for your child’s behavior problems (because in the end, who else do you blame)? I need to tell you this:
I have been there.
I have done that.
I’m going to make some assumptions about all of you, and these assumptions have to do with the reason Penny, Amy and I started the Happy Mama Retreat. These assumptions acknowledge some commonalities about our situation. These assumptions are based on my experience moderating the Easy to Love but Hard to Raise Facebook group as well as my experience, along with Kay co-editing our book. I’m also basing this on hundreds of interactions I’ve had with parents whose children have the same diagnosis as my son does, fetal alcohol spectrum disorder, or FASD, which we consider an invisible physical disability, for it involves significant damage to a major part of the body that we just happen to not be able to see: the brain. It manifests itself almost 100% in behavioral differences, which many times cannot be changed, although they can be managed with proper accommodations and supports.
But my assumptions and acknowledgements actually have very little to do with individual diagnoses, and everything to do with the experience of mothering a child with invisible special needs. When Kay and I worked on Easy to Love but Hard to Raise we found that there were commonalities of experience that occurred completely independent of diagnoses:
I’m acknowledging this:
That what we do as mothers is hard.
That what we do as mothers of children with invisible special needs is especially hard.
Because when your child has a brain-based disability, or a neuro-developmental problem, or different wiring, or whatever you want to call it, the natural place to assign blame – for everyone to go, including YOU, your spouse, your family, friends, the world – is the mother. Why can’t you control your kid? Why can’t you do what all the other happy families you see around you? It bounces back and forth from what is wrong with HIM to what is wrong with ME?
There is no roadmap for most of us. The path to diagnosis, no matter what it is, is long, windy, and convoluted and once we have a diagnosis we still have a long, windy, and convoluted road in front of us.
While we’re on this road we’re constantly judged by people who don’t know the reality of the situation. Momentous decisions, like whether or not to medicate, to try this treatment or that, or what parenting technique to use, are all food for discussion and judgement by people who often know us and love us but don’t really understand what’s going on.
Whether or not we have the aptitude, interest, or passion for it, we’re all now experts in our child’s special needs
We have to be constantly on guard, constantly ready to solve problems, constantly maintain and model calm (HA HA) to try to diffuse our child’s volatile emotions.
We have to stand up for our child, even when we don’t fully understand why and how his or her brain works, at school, so that our child has the best chance of learning and growing and not being accidentally (or on purpose) damaged by a system that works best and easiest if everyone has the same goals, same learning needs, same pace of learning, and most important: if everyone can just stay in their seats, keep their hands to themselves and keep their mouths closed.
We have to constantly bolster the self-esteem of our children. Self-esteem that suffers because they know they are different, because life is harder for them and because they are constantly navigating a world that tries to force them into a mold that they just can’t fit. And for those of us who have children who are so frustrated with their lives that they lash out at the person who loves them best and who works endlessly to help them – for those of us who have children who scream at us regularly, who alternate I love your and demands for hugs with I hate yous, whose children say ugly things like you’re MEAN, FAT, and ASSHOLE, a BITCH…and who seem to have to argue and cause conflict no matter how big or small the problem. Well, for those of us, me included, who often struggle to LIKE the child who we love so dearly… this is immensely difficult.
And then we have to parent our other children, work, keep our houses, be good wives or partners, be good daughters, sisters and friends. Oh, and lose 20 lbs, be committed and ambitious in our careers, and have hobbies beyond checking facebook and searching for the very best low-calorie margarita recipe.
I am not going to tell you any big parenting secret. First, some of you may already have this figured out. If you have it figured out will you please raise your hand right now so that we can all sit with you at lunch! I will also offer you a book deal right now. Hands?
Instead, I’m going to offer you a metaphor for what it’s like to be the parent of a child with invisible special needs.
Click here for part 2: The metaphor.