I realize I’ve been writing here for several weeks now without really introducing myself or my daughter. I haven’t written much about her specific challenges or my responses to them. I guess I expected all of this to come out more naturally, but there’s a hang up — which I’ll explain shortly.
Our daughter is currently diagnosed with Pervasive Developmental Delay – Not Otherwise Specified (PDD-NOS); part of the autism spectrum generally falling between high functioning autism and Asperger’s Syndrome.
Our first indication that something was amiss began around 18 months when our daughter was not gaining words as we expected her to. We were told by our doctor and many family friends not to worry because some kids just talk later. I started working with her myself without knowing what I was doing and we expanded her vocabulary to over 300 words by age three, but her language was laced with echolalia (scroll down a bit on that link.) Still concerned, I went to our school district where we were told that she had a language delay and we enrolled her in the Early Intervention Program. There were other warning signs (in hindsight) but at the time as inexperienced parents we thought we were doing all that she needed. About nine months later (now expecting twins) our daughter started behaving aggressively toward peers and adults in her preschool settings. Finally, “off the record” one of the Early Intervention teachers said the word autism to me, and a cascade of events began. We worked hard to set up a more intense intervention program. Our daughter was four and a half years old when she was officially diagnosed with high functioning autism, three years after I initially started asking for input from professionals. That lag time is unacceptable in my mind, and I’ve been on a mission to help other families learn more, faster, ever since. Shortly before beginning Kindergarten our daughter’s diagnosis shifted to PDD-NOS.
So what’s the hang up to talking about her current challenges? Aside from her language delay, which is still evident if you attempt to hold an extended conversation with her, my daughter’s main challenges now lie in the realm of social interactions. By default this means that another person is involved in every challenge. When that person is outside of our immediate family I feel constrained by respect for that person’s privacy to not discuss it, even in general terms. Even though I write about “our stuff” out here on the internet, I’ve always tried to protect my daughter’s privacy as much as possible. I don’t use her name, I don’t mention her school by name, and I don’t post photos of her face. I feel like I owe at least that much and perhaps more to other members of our community. Particularly because we live in a small city where faces are familiar and the grapevine flourishes, it doesn’t seem appropriate to write about “other peoples’ stuff” even if it overlaps with “our stuff.”
In mulling this over I thought I would just throw out the dilemma and ask how others have addressed these concerns. I know not everyone protects even their own family’s details as much as I do, but where is the line of privacy when it comes to discussing interactions with others.
What do you think?
Kimberly, I can relate to your hesitation to share personal information online. That’s good of you to be sensitive to the needs folks around you have for privacy, especially your daughter. There’s the small-town thing going on, for sure. But for me the biggest issue is how my child would feel if she were to read my posts…and I don’t want to share anything there that I wouldn’t be comfortable having her read. I think this probably makes my blog a little less transparent than it could be, but I figure folks who need that super-personal connection can contact me privately and take the discussion off line.
I think you have to do what you are most comfortable, given your situation. I try to keep as much anonymity as I can in terms of other people and their children. I try to look at each post as a way to educate others about our experiences, and in a positive manner. Sharing our mistakes and short-comings makes other realize that we all are trying to do the best we can in this life we are given. I think if people can connect with you, even on the level of keeping some of your child’s moments private, you are doing a good job.
I feel the same way you do. Lately I’ve been thinking about starting a blog. Both my girls have sensory integration issues, auditory & visual processing issues, hypotonia, motor planning and working memory issues. I deal with the school telling me they’re lagging behind because of lack of attention & then I have their neuro/vision specialist telling me she wouldn’t give them a special needs label. My husband is very reserved & doesn’t talk about their issues except to me & occasionally his family. I feel it’s my job as their mother to be their #1 advocate no matter what that means. I mentioned to him that I was considering starting a blog & he didn’t like the idea of me writing about the girls’ special needs. He thinks if I write about their issues then people will only think of them as girls with issues. My thought is if we keep quiet about their challenges then it almost seems like we’re hiding part of who they are. I wasn’t intending my blog to be exclusive to special needs, but I wasn’t going to refrain from mentioning it. Also, the more people read about our special kids with neuro issues the more educated everyone will be.