When You Are No Longer Part of the Pretty Party
Does the following sounds familiar to you?
I recently received a diagnosis. I knew something was “off,” but I brushed it aside, telling myself I should work harder, have more robust moral fiber, hurt and complain less, function more clearly and “get it together.” The diagnosis named all of those little things that were “off” and made me aware of some I’d just considered “normal.” My normal is, apparently, not everyone’s.
I did some research, got on some sites, and freaked out pretty thoroughly. My future, in living color, doesn’t look pretty. Literally. Those aches and pains can be expected to get worse. That weak moral fiber I have accused myself of for decades is going to have to be part of my action plan. Others won’t see, and if they do, they’ll pity. I’m judged on something I have no control over, doesn’t have a cure, and while not life-threatening, was definitely not part of my best life scenario.
I cried. I actually cried quite a lot. Not that anything changed, but more things made sense. But the losses seem more permanent with the naming of the thing. No amount of my working harder or smarter will change the outcome. It is what it is. And now, instead of fighting to get on top of a small thing, I will be fighting just to keep going.
The diagnosis changes everything.
This little naming and knowing changes things with what I do and who I do it with. The comments that I have made, observing my own state of being and ability, are straight off the diagnosis page. Who knew?
And now the action plan. What do I need to do? Can I afford to do it? What do I need to grieve and give-up and move away from?
Those other people- the beautiful ones-the ones still at the pretty party; they have what I do not, what I won’t have. I am no longer a part of the pretty party. I haven’t been for a long time, but the knowledge that I know have seems to make it permanent. The pretty party is not all-inclusive, and I am definitely not on the party list.
And so I grieve that too, the fact that I don’t belong. The truth is that I feel judged and that others don’t want to include me – as if my struggle would rub off on them. I feel a desperate need to seek out others who are struggling to make the best of rotten realities.
I find them, and they are welcoming and open-armed. These people are helpful, responsive, and offer good advice. Advice like, go ahead and cry, see this doc, read this article, stay away from this misinformation. Things like, “you can’t be cured, but you can be well.” “You might not have your ideal best life, but you can have a beautiful, good enough life.” And I find myself crying a little bit now, too. I’m crying in relief at having found my people; grateful for the tribe and sorrow that it’s mine. It’s fine to feel both, as you grieve over having lost your ideal.
(Still looking for your “tribe?” Check out our Special Needs Homeschool Facebook group, Survive & Thrive.)
Maybe this sounds familiar because you’ve received a diagnosis.
You’ve just found out that your beautiful child is dyslexic, or autistic, or has a processing disorder. Maybe you’ve found out that your sweet little one is ADHD or on the spectrum. Life will never be the same, but it can still be a beautiful, good life.
Take the time you need to regroup and re-calibrate and realize that this will be an on-going process.
Some tips on getting through a tough diagnosis:
- Grieve the losses. Grieve your new reality.
- Research an action plan
- What do you need to do?
- What can you afford to do?
- Find resources and people who have the same struggles. Find a tribe.
- Give yourself time as you re-calibrate and re-group.
- Give yourself time. Eventually your new reality will be, if not your ideal, o.k. And you will be the one opening arms to others who are desperately seeking their tribe.
Not sure where to start? We can help!
First, check out our post, After the Diagnosis, to form an action plan. Then, when you are ready, seek out our Special Needs Academic Advising, which will help you move your plan into action. If you feel like you just need more, we also offer Summer Boot Camps and Special Needs year-long classes.
Another great resource is SPED Homeschool. Check them out today!