The 12 Stages
by Ashley Roberts
You have heard of the stages of grief when dealing with death, but have you heard of the 12 stages of emotion for the special needs parent?
Eleanor Westhead and Rick Lavoie came up with strikingly similar theories at approximately the same time. I've had the great pleasure of hearing Rick Lavoie speak and found the stages of being a special needs parent to be rather profound, and in my advocacy life, learned that it bears so much truth.
I have said before that I have found far too many instances in various community support groups of mistreatment of fellow parents. This emanates in a variety of forms.
A parent can ask what seems to be a seemingly harmless question, and in the course of responses you will see anger, arguments, condescension, shaming, compassion, kindness, and more. Upon entry into the dyslexia community on social media I quickly stopped commenting or questioning on anyone's post because there was always someone quick to argue, shame, etc., and that wasn't something in which I wanted to engage.
My least favorite responses were the self purported experts and how condescending they could be. I always wanted to comment and state that they had clearly forgotten how vulnerable one is at the beginning of the journey. It's not the parents fault that upon entrance one is not automatically gifted with vast knowledge and a doctorate in the subject of dyslexia. People need to ask questions in a safe space and be treated with courtesy and compassion.
Fast forward to 2018 and I partner up with two amazing women and we create The Dyslexia Initiative. In the course of having the pages and the variety of posts we have done, occasionally we get comments that cause us to pause and ask each other, what is the appropriate response here? It's usually Chontae who speaks and says, "Clearly this person is commenting from a place of great pain."
I love her empathy. Truly. Her ability to see through things is a real gift, and I love and cherish her insight. It always makes me pause, recall Rick Lavoie's speech, and remember why we are here to begin with, and what it is that we hope to achieve.
Over the year that we have had The Dyslexia Initiative, our message has become as equally about sharing information to help educate and empower, as it is about the human spirit, gratitude, beauty, kindness, forgiveness, compassion, and unity. In the journey that is dyslexia, these emotional aspects are just as vital to surviving this road as it is to life itself.
Regarding the stages below it's important to note that you can be in more than one stage at a time, that you do not travel through the stage only once, it is not like grief in that way, and that once you get to acceptance, there is no guarantee that you will stay there. Think of the stages as an endless slide with twists and turns, ups and downs, and loop de loops.
There is also no set order like grief, and no time limit for each stage. It is possible to get stuck in a specific stage and stay there for a significant length of time.
So I share the stages with you below, as well as the specific language that Mr. Lavoie qualified them with, so that you can see them for what they are, recognize them in yourself as well as in others, and consider them at all times when speaking with other parents within the dyslexia community, as well as special needs parents at large.
Nothing is really wrong; That's the way I was; Wait til next year
Well move; We'll change schools; Send him to camp; Send money
Those doctors, teachers, etc don't know anything; I hate this school, neighborhood, kid, etc.
Let's try this therapy; We're going from clinic to clinic
Too long in the playpen; I shouldn't have worked; I should have used cloth diapers; Am I being punished?
You baby him; Not from my side of the family; Those f*****g teachers
Look at my sisters kids; It's not fair; Why me?
No one really cares; No one understands this kid except me; Circle the wagons
Imaging how great things could have been; If only....
Maybe it's worse then they're telling me; Will she ever marry? Work? Be independent?
There is no hope; I feel so inadequate; Where have I failed
Let's get to work; Child orientation approach; Let's work together
Bearing all of this in mind, please always be kind and show compassion. As we all know, the journey is hard and the pain is very real, for our children, as well as for ourselves.
I also encourage you to read Mr. Lavoie's books, and if you ever get a chance to hear him speak, I promise it's worth it.