This is a re-post of a speech I gave to welcome everyone to the 1st Happy Mama Conference and Retreat, first held summer of 2012 in Conover, NC. It’s a great retreat and is still going on!
I’m reposting the speech for a couple of reasons. One, because even though several years have passed, none of the challenges I and so many of my fellow mamas of children with NB special needs have changed, and two, maybe more importantly, the core message of this speech is still CRUCIAL for us to 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.
This chair is in my bedroom. Do any of you have a chair in your bedroom? What happens to chairs in your bedroom? This….
Maybe not quite as bad as mine, but whatever. It’s been a busy last couple of weeks.
Here’s the deal with the chair: when I do laundry I bring it into my bedroom to sort and put in piles on my bed. Each kid has a pile, my husband has a pile, towels go in a pile, etc. Once laundry is finished for the day I call my kids in to put their clothes away, and they usually do. Sometimes my son Jamie puts up a big stink (he’s my ETL baby) but since this is the ONE CHORE he has eventually he’ll do it. My husband puts his clothes away, too. So that leaves my clothes, the towels, the sheets, cloth napkins, dishtowels, etc.
So I make sure everyone’s laundry is put away…and then I don’t put away my own.
I also might wear something for a short time and decide it doesn’t need to be washed and it ends up on the chair. Or I try on a combination of clothes and whatever I don’t wear goes on the chair. And other random crap goes on the chair, too.
If my kids had a spot in their room that looked like this I would make them clean it up. Anywhere else in my house if there was a situation like this going on I would take care of it right away. Believe it or not, I have a pretty picked-up and organized house.
But this chair – well. Stuff gets piled on. And I neglect it. Because it’s MINE.
Just like my life as the mother of a child with invisible special needs. I take care of him – I do constant research, we go to doctors, therapists, specialists, try medications, try a billion different parenting strategies, go to trainings, read books, structure our lives so he has best success, manage my house, parent my other son, try to love my husband, try to work…but the part of me that is ME, that needs a little time now and then to emerge and have fun and show itself – well, that part gets piled on. And neglected. Just like the chair.
Unless I make it a priority. Unless I work just as hard at helping ME and taking care of what I need as I do for him. Because guess what can happen?
The part of you that is YOU, that isn’t defined by the crap piled on top of it, can come out and show itself.
Now I’d love to tell you that I have reached a point of complete self-realization in my life and my bedroom chair always looks like this. Sweet and accessorized with no junk on it…
But it’s not true.
Because to make the chair look like this all I did was MOVE THAT CRAP OVER.
And so this is the second part of the metaphor: if we are the chair, constantly being piled on, never seeing ourselves for the cute accessorized chair that we are, then it might not be possible to completely stop the piling. Life gets in the way. We have time crunches. We have habits. Other people have needs and it’s our job to fill them. But we can do one thing every once in a while – and that’s what we’re doing here today: we can move that crap over and make space for our selves to come out and get what we need to be better parents, mothers, women, and people.
And then, as needed, we can move that crap back.