With the exception of our families, not a lot of people ask us about Abby. Maybe you want to; maybe you don't know how.
I can only speak about the experience of being a parent with a developmentally disabled child. That's all we know, and believe me, we don't know much. From the first moment of her being born, we've known only what she demonstrates for us. I've seen online that lots of kids are referred to as being their diagnosis: a Down's kid, an Opitz kid, etc. Since she has no diagnosis, she is only Abby.
I can't speak for her. But I can write here all about what it's like to be us. Here is a rough list of what goes through my head on any given day:
Will Abby ever look normal?
Does Abby look abnormal right now?
Do people think she's handicapped?
Do people look at her right now and know?
Did the people I just pass in the mall give me that cute look because they're proud of me?
Will Abby ever walk?
Can she go to school?
Can we afford the school she may have to go to?
Will she ever move out or are we going to have to care for her for the rest of her life?
Will she become autistic?
Do I even know the warning signs for autism?
Why does she arch her back all the time?
Is she more emotionally distant than Lily?
Will she ever be able to have kids?
Or get married?
Or enjoy music? Play guitar?
How hard will it be for her?
How hard will it be for us?
Will other kids play with her?
Is she going to be invited to things?
Will she ever go to a sleepover?
What does she think of us?
Should I not have recognized any of this earlier?
What goes through her head?
Is there a normal version of Abby somewhere in the universe?
Why have I not done more to help her?
Why is she so obsessed with picking my nose?
Did she get that from me, or is that abnormal behavior?
How can I quantify what "abnormal" is?
When will she be diagnosed?
I hope she'll never be diagnosed.
No, that's not a good thought.
How utterly and completely evil am I for being happy that Lily is "normal"?
Can I feel any more guilt than that?
She smiles a lot. And laughs. That's good.
I should feel better when I look at support group websites online, but I don't; they make me feel miserable.
Should there be a support group for support groups?
Why is there no support group for people with kids who have no diagnosis?
Why is the perfect daycare for her so damn expensive?
How long can she go to a normal daycare?
When is Lily going to suspect that her sister is different?
Are we going to have to tell her that someday, like, have a little talk about it, or will she just know?
Should I appreciate her more?
Do I favor her over Lily?
Will I ever be able to be impartial to my kids?
I punish Lily so much easier than I do Abby.
Why is Abby so sensitive?
I was pretty sensitive as a kid, so maybe that's not so bad.
She laughs a lot.
And she's been giving lots of kisses lately.
Will her bangs ever grow in?
Will her soft spot ever go away?
I feel like a total jerk, there are kids with much worse disabilities out there.
She's so close to normal sometimes.
I let myself go so long believing she is.
Is she?
She might be.
Some kid recently said she "looked funny".
She might not be normal.
Why is there no diagnosis yet?? How worthless are these doctors?
How many doctors does she have now, anyway?
I know all her doctors love to see her, though.
Why?
Because she laughs a lot.
But she shakes her head, too, like she's having a tantrum, for no reason. Will that stop?
Maybe.
When will we know anything?
Maybe never.
What do we DO until then? Nothing? Everything?
Whatever we feel like.
That's not an answer.
Hrmph.
(sigh)
She loves to laugh. I can picture it now, and I can hear her clear as day.
Day one hundred and seventy six.
My name is Amy, I found this post because I'm signed up for google alert that send me anything about undiagnosed children, no diagnosis, and so on. This is what came up "Why is there no support group for people with kids who have no diagnosis". I thought I would let you know that there is a support group and organization for parent of children without a diagnosis. The support group is just an e-mail support group at this time, but we would like to reach local areas. You can find more information at www.undiagnosed-usa.org.
ReplyDeleteI too am a mom to a child who has no diagnosis for her many signs and symptoms. She is now 13 and we have been in the unknown land since she was born.
Contact me if you would like more information.
Amy Clugston
amyclugston@undiagnosed-usa.org
Wow, thanks so much for sharing. We think she's cute!
ReplyDeleteOk, so I have had almost all of those thoughts in my head too.
ReplyDeleteI'm Katy Sullivan's sister-in-law. I have three boys. 5, 3, and 1. My three year old has an undiagnosed seizure disorder with profound developmental delays. His name is Dermot.
I also have a blog, read about us at: http://sullivanedinaboys.blogspot.com
I too was frustrated by the lack of support groups for undiagnosed children. I looked online for options, but it doesn't seem to be the same as actual real people.
I've found one through Edina ECSE and now we meet independently of the school. You and you wife are welcome anytime. We have a variety of children. Some have Autism, Down Symdrome, Cerebal Palsy, a few have no diagnosis. all ages 2-6.
Some books that I find valuable are "Changed by a Child" by Barbara Gill, and my favorite "A Different Kind of Perfect" its a collection of essays by parents of special needs kids of all kinds, at all stages of grief.
I think that the hardest part of being a parent of a special needs child is learning to live with the grief, because it won't ever go away completely.
Don't worry about when Lily "finds out" Lily doesn't know what different is, she just knows Abby is her sister...
David, I found this post to be a refreshingly honest and gentle way to confront a difficult subject, while inviting others to be curious with you. Having recently written a book about living with a chronic illness, I can identify to some degree with the challenge of an uncertain future. You do the genre well with your frank and insightful approach.
ReplyDelete