It’s been chronicled in other threads, but my youngest twin may have Apraxia. She was born limp, blue and not breathing with an apgar of 2. Spent 36 days in the hospital before coming home. MRI scan shows zero damage to the brain and therefore her mild developmental delays likely to be at the cellular level.
Had our first speech therapy assessment today and seems likely that Serena has Apraxia. Will do more assessments, etc, but it sure sounds like this to a layman.
Anyone on the boards have personal experience with this? If so, I’d like to pick your brain as to your experience.
If what I understand of apraxia is similar to one of my husband’s cousins, V, who has dysphasia (aphasia?), then your daughter might always have language difficulties, but can still be a happy, healthy child (not that you really doubted that, but I didn’t really know how else to start this post! hehehe)
V was adopted - her mother used drugs and alcohol during her pregnancy. She is now 5 years old and in kindergarten, and has perhaps 15-20 “sounds”, only about 5 of which are words (Ma, Pa, tu, va -she’s French) and such. At this point, she likely will never improve much on her spoken vocabulary. She has no problem understanding what’s said to her, she just can’t communicate back, and she has some motor skill issues, too. She goes to a special school, and has a picture-based computer thing that will speak for her. At this point, she doesn’t really use it very well, since her reading skills aren’t that good, but she’s understanding what it can do for her. She also knows a few signs (though I’m not clear as to why her parents aren’t teaching her ASL) and when I watch her with her 3 siblings, or her many other cousins and neighbours, you really wouldn’t notice much other than to think she was a quiet kid.
In a way, she’s lucky, because the stuff she needs to develop is funded by the Québec government (health care and educational assistance). That takes a lot of pressure off of her parents! I don’t know what kind of assistance you can get in Shanghai!
I don’t suppose that’s really all that helpful for you, from the point of view of someone who will have to raise and interact with someone with a disorder like this, but I’m amazed at how well this kid gets by, and I just thought that would cheer you up or something!
One of the little kids I worked with had apraxia. I don’t know how she’s turned out, but at that point - when she was 3 to 4 - she only had a few words (blue, Mama, Dada, maybe a couple of others) but oddly could mimic several animal noises. What was dismaying to me was that she was three years old and already so harried by people to try to talk that she refused to try since it was too stressful. This frustrated both her and the speech therapist to no end.
On the other hand, I heard her speak without trying once:
We’d come out of the bathroom and she tried to reach up and turn off the light. She was too short, so I lamented “oh well” and she repeated it, clear as a bell. Stunned, I thought I imagined it until another person in the room asked me if she just said “oh well.”
By the end of the school year, which was shortly after her fourth birthday, she was using ASL quite well (though, being very young her vocabulary wasn’t particularly large yet) and using a device that had buttons with pictures on them to push to say things for her. I know there’s a fancy term for such a device, but the name escapes me. All in all she wasn’t too bad at communicating what she wanted to. Since she’s of at least average intelligence and now about seven, I imagine she communicates in writing as well. (though I have a fantasy that her problem was a temporary one, like the motor issues she made huge strides towards overcoming in just the 10 months I knew her.)
Unfortunately, I have no idea how it works in Shanghai, but in the US your daughter would likely be eligible for services now from a birth-to-three type program, and then special education preschool etc. Hopefully there are accommodations similar to that where you are.
My oldest son may or may not (depending on which specialist I ask) have verbal apraxia. He’s 5, and uses a few sounds and a lot of signs and gestures to communicate. We’re teaching (and learning) ASL, and encouraging vocalization, but it’s a long, slow, frustrating process.
If I recall, your daughter is still very young, and I believe that the earlier one gets the diagnosis, the better to help her learn to communicate.
On a brighter note, once my son learned that he could use his hands to communicate, he started making up his own signs to tell me what he wanted me to know. It’s a little confusing at times, and often hilarious, but he’s a little chatterbox with his hands, now. He’s invented his own signs for “tornado”, “washing machine”, “stinky baby”, and “little brother has removed his diaper and is running around naked.”
Thanks all. Nice link. We’re not sure if she has Apraxia but initial evaluation shows it is likely.
Serena has been diagnosed with MILD development delays. It seems like and we’re certainly hoping that all she needs is some extra help. Certainly that was the case for walking as she is 6 months behind her over achieving twin sister but now well within the normal development range. The doctors we’ve been working with are all quite optomistic and I think happy to work with a child that just needs help to get over the hurdles rather than working out strategies to cope with never getting over the hurdle.
As a parent it is very sobering to spend time in a Children’s hospital, and heart goes out to those less fortunate that have serious problems that may never improve.
When I went to school in Barcelona, it took me several years to go from “understanding Catalan” (which I always have, Mom’s from there and we’d visit twice a year) to speaking it because people would have the same circus-like reactions for anything I said in Catalan as for a child’s first words.
I’m convinced that the only reason kids learn to talk is because they have things they need to communicate and can’t find a way that doesn’t turn grown-ups into badly-trained monkeys…