Cornelia Rivers

Baltimore, MD

Cornelia signed the petition | 27 days ago

Children's Hospital of Philadelphia: Allow the kidney transplant Amelia Rivera needs to survive
Cornelia signed the petition | 7 months ago

Stand With Me, Jose Antonio Vargas, for a New Conversation about Immigration
Cornelia signed the petition | over 2 years ago

Tell Your Senators: Now is the Time for Health Care Reform
Cornelia commented on the article | over 2 years ago

What Doesn't Cause Autism?

Here's one - blame it on parents who paid too much for a college education. Seems kind of odd that the rising autism Dx happens at the same time as rising college tuition. Or maybe too many people going to college and thinking too hard?

I am of course being sarcastic, so please don't tell me how autism cuts across socioeconomic and educational levels. I'm joking, OK?
Cornelia commented on the article | over 2 years ago

Words Don't Always Say What You Think They Do

Am I missing something? Is this comment related at all to the post or any of the subsequent comments? I don't think any of us were implying our children were MR and I resent the implication that talking about a-typical speech means that we're saying our kids are MR.

Or am I misinterpreting what you're saying?
Cornelia commented on the article | over 2 years ago

Words Don't Always Say What You Think They Do

I wonder if some of these language issues are universal to autism, or at least a sub-type of autism. It all seems very familiar to me. My son is quite echolalic so we too have a household filled with a lot of talking. On the other hand, his self generated or composed language (i.e. non-echoed language) is very limited. His echolalia can be single words, phrases or entire scenes from a movie or computer game.

I think there's a feeling among SLP's that echolalia is a form of stimming, and at times it is. Sometimes it's an interactive type of stimming where there are proper responses that I am expected to make. Sometimes though, these words or phrases or songs from the past are used as symbols for something that he's trying to communicate. Let me give an example. For a long time "no slide" was his phrase to express frustration at not being allowed to do something that he wanted to do. This came from a party next door to a house with a jungle gym that he wanted to play on and couldn't. With a little understanding this is real communication. It's hard to make a catalog of these phrases and they're not understood by many people. It's a difficult language to understand because you have to look at the situation and because it's constantly evolving over time.

When you separate yourself from the frustration of how difficult it is to understand what he's trying to get across you have to acknowledge it is a language. And with all the symbolism and metaphors it's pretty poetic.
Cornelia commented on the article | over 2 years ago

End the Bureaucratic Pain

Bureaucratic Pain is a perfect term for it. Everyone who lives in society has to deal with it - getting a driver's license or passport for instance. Once you have a special needs child though, it ratchets up to a whole new level. The six month wait for neurological assessment, the 20 pages of forms to get on a waiting list for disability, the lawyers who make sure everyone talks nice even if that means the meetings stretch for four torturous hours, the school system paper pushers who never actually see any students, but who know where to place an autistic kid because they've placed autistic kids in the past, the social workers with condescending attitudes who "want to help you with your stress" while being totally oblivious to the fact that their inane questions are a big source of your stress at the moment. I could go on, but I won't.

I can only imagine how much more condescending these bureaucrats would be towards a self-advocate. My son can't stand the boring talk-talk-talk of a school assembly; I don't know how he'll make it through his first IEP meeting, but he'll have to eventually.

A "journey you never planned to take, without a map or a clue which direction to go" sounds much more pleasant than navigating through this maze.

Sorry, I don't have any constructive ideas to solve these problems. The explosion in autism dx's mean there can't be enough service providers until there's some sort of stabilization. The forms do need to get filled out and the meetings and assesments need to take place and I'm sure the clueless social workers feel like a great, helpful source of information to some parents. I guess my point is just "I feel your pain."
Cornelia commented on the article | over 2 years ago

You're Under Arrest

The training and protocol changes that ought to flow naturally from these types of cases seem often to be missing. I wish judges would mandate them at the same time as compensation. Changes also need to be made when there are out of court settlements, but the lack of press coverage it never seems to happen. If the system isn't changed it's bound to happen again.
Cornelia commented on the article | over 2 years ago

No Miracles But Lots of Hard Work

It's all about step by step growth and figuring out the setting that challenges your child without reaching the point of frustration, balanced by the needs of the other kids in the class. As my kid has moved through four different schools I think my DH and myself are the only people who have seen enough of the results to be able to judge what setting works best for him. As much as I valued the training and experience that the teachers had at the non-public autism specific school (that was 2 and 3 years ago) they didn't know how shut down my son was in their school, because they had never seen him open and joyful. As I walked around their school, where the majority of kids had massive behavior problems and where all of these problems fed on each other, the joy was sucked out of me, so it wasn't surprising that my son withdrew into a protective shell by zoning out.

My point isn't that all kids need to be in an inclusion setting or that non-public special ed segregated schools are bad, but that general rules by experts about what works for autistic kids have much less value then a long term parents' perspective when making placement decisions.

Clearly you know what works for Charlie, as his growth and successes prove. You've also found out what doesn't work, no doubt. You know what the ideal placement would be. Now the job is to find something that captures the most important parts of that ideal placement and find the experts that will be on your side (because school systems have no interest in listening to parents in my experience) to convince the school system to make the right placement decision. And if where he is now is that place (with a little training on their part), then that's the placement you should be fighting for.

Good luck. In less than a year we'll be going through the same thing as our current placement stops at 5th grade. Time to find a middle school that we like, that wants and values us - yippee!
Cornelia signed the petition | over 2 years ago

Tell Congress: Repeal "Don't Ask, Don't Tell"