I continue to be impressed with Julia's progress, especially when you look at it comparatively (where she was and where she is) but there is still something, something that I can't quite put my finger on that just isn't "right." I've recently been around 3 other two year olds (2 that are going to be 3 at the end of March and one that will be 3 at the end of May). It's probably not a good thing but as a mother, I can't seem to help looking at them in comparison to Julia. Perhaps this is a normal thing to do when you have a child that is developmentally behind, I don't know. The point is, I know that all children develop differently and in different time frames but when it comes down to it, there is a pretty specific order in which things "should " occur and they should occur within the relatively same time frame. For example, an "average" kid walks between the ages of 11 and 15 months. If a child walks at 16 or even 17 months, it may not be a big deal, but when a child doesn't walk until they are closer to 21 months...it's pretty evident that there is something going on. So, when looking at these other kids, who, at her same age (give or take a few months which admittedly can make a big difference when they are this young) are saying things or acting in a way that it's hard to imagine Julia ever doing , let alone doing it in a few months time when she will be at the ages that these other kids are now, it puts things in to perspective a bit. So, I have been thinking about this...a lot. I decided to come up with a list of behaviors, things she does, or doesn't do, and just general observations of what it is exactly that concerns me.
-Avoids messy activities such as finger paints (while I haven't actually exposed her to finger paints, she does have to have her hand and/or face wiped immediately if something of the same consistency as finger paint gets on her)
-Tends to withdraw from a group (when we are at playgroup she will play with a toy by herself but will not play with other children...if another kid comes over and wants to play with her and whatever toy she has, 99% of the time she will just give them the toy and walk away instead of trying to either share or tell the kid it's hers or whatever).
-Enjoys getting in to an upside down position.
-Has difficulty climbing or descending stairs and/or hills.
-has a language delay ( she has many words and sentences but does not answer ?'s appropriately Example: Do you want to play with your blocks or your piano? She says, "Yes.")
-feels loose and/or floppy when I pick her up or get her dressed.
-has trouble turning knobs or handles that require pressure.
-resists friendly or affectionate touch from anyone besides parents, siblings, or grandparents.
-is distressed by dirty hands or face.
- is a picky eater. Only eats certain foods and textures, resists trying new foods.
-may refuse to walk barefoot on grass or in sand. (this has improved but is still a slight concern).
-continues to mouth objects after age two (she frequently puts things in her mouth that don't belong( random things like small toys, lint, paper)
-disliked being on stomach as an infant.
-fearful of going up or down stairs or on uneven surfaces (fearful I think because she physically can't...has the low muscle tone)
-has a "floppy" body ( has head control and stuff like that but is very "loose" otherwise...floppy limbs etc)
-poor or delayed gross motor skills (can't climb or descend stairs can jump in place but not off of a small ledge)
-may only eat soft or pureed food after 24 months ( either eats soft foods like yogurt or applesauce or really crunchy foods like toast but not much in between)
-often stuffs her mouth with food, either gagging on it or spitting it out if her mouth becomes too full)
-does not interact reciprocally with peers or adults (again with the language...will say anything but has trouble with actually having a "conversation")
-occasional "hand flapping" which most of the time seems to occur when excited by something but since she can talk I feel like she should be able to communicate her excitement verbally)
-sometimes seems overwhelmed in certain situations (for example at family dinners(family meaning the extended family...grandparents etc) we will all be talking and eating and Julia will burst in to tears for no apparent reason. This also happens when she is around people she may not see on a daily basis.
Putting it all down on paper really makes things a lot clearer for me. When you look at each individual thing, you may just think, "Yeah, so that's the way she is." When you look at it as a whole , it becomes apparent, at least to me, that there is something going on here. It's like a puzzle...all of these little pieces come together to form a bigger picture. It's clear that she has sensory and motor planning issues, some of which are a result of or in conjunction with her low muscle tone. It also seems clear that while she can talk and has many words and sentences, she has some sort of a language or communication delay. It most definitely seems that she has some sort of social anxiety type thing as well.
These things don't happen all of the time, but with enough frequency to make it a concern. I can't remember where exactly I read this but I saw it somewhere: "Inconsistency is the hallmark of a neurological disorder." So, it makes sense that sometimes she will communicate effectively, or eat well, or any of the things listed above.
We have a number of appointments coming up that will be a good platform in which to address these issues. The first one is her 2 1/2 year check up with her pediatrician that is scheduled for next Thursday night. Shortly after that (about 2 weeks later) she has her 6 month regular check up with her developmental pediatrician. Then, at the end of February, we have the beginning of her public preschool assessment in which the public school coordinator from Early Intervention will come out and get the necessary paperwork filled out to get the ball rolling. In between all of that, we also have a few visits with Early Intervention planned, so I can address those issues with her PT as well.
I am curious though as to what you think. Obviously, most of you only have my observations to go by as you haven't seen her in action but I feel like I have given an accurate profile of where she is.
Comment away!
You just described an Aspie. That is, a kid with Asperger's Syndrome to one degree or another. She has the genes for it, just like me, just like Dan, just like Sadie.
ReplyDeleteIt's not a big deal, but being aware such a thing exists and applies to her will certainly make it easier to adapt.
She does seem to have some of the social anxiety/ language symptoms that mark the autism spectrum disorders (like asperger's), but that's for a professional to decide. That just may be the way she is, although from her pictures and the stories you tell, it seems as if she has a very sunny personality.
ReplyDeleteWhat concerns me more is the lack of muscle tone, honestly, especially as she has plenty of opportunities for play and other activities that should strengthen her muscles.
I think that this list is a very good thing, and you should add to it as the thought strikes you, and then print it out and share with her pediatrician and the development specialist as is.