Christmas 2008

Photobucket Album

I just heard about this movie that came out, called Autisitc-like: Graham's story which I really want to see. Of course, Netflix doesnt have it yet--so i guess i'd have to buy a copy. Its about Sensory processing disorder.

You know, the more time that goes by the more i think its just the SPD, maybe not Autism. I'm so torn, because, hello, i'm no doctor, but i see all these signs...then somedays i just see a normal kid with a speech delay.

I guess we'll just have to wait and see what the doctors think. March. March 5th. Just a three more months.

Google books.

OT for eating disfunctions.

Sensory integration and the child

my all time favorite:
The out of sync child

Feeding

I would just like to vent my frustration.
The feeding clinic gave us a run-down on things we should be doing when we feed Presley. I already give her praise when she takes a "bite" (and by "bite" I mean actually taking a spoon full of liquid baby food), I try to do mouthing exercises (trying to get her to mimic chewing...I use a yo gabba gabba song that goes 'bite bite bite, chomp chomp chomp). BUT these "tools" they gave us suck. I'm sure they work and I’m sure eventually she'll get use to them but I just want to share them with you.

First up we have the "probe"


Its use to stimulate the tongue. It blows. Not only does it have a suggestive name, it’s tiny and easy to shove down your kid’s throat. Especially when she’s jerking her head all around to get the weird thing out of her mouth. They say "gently tap it on her tongue three times" RIGHT. She’s screaming, biting on it, shaking her head back and fourth.

Next we have the "grabber"

I've got Presley to bite on this one time. We use the long end, to place on the side of her mouth and get her chomp down for three seconds. It’s pretty much the same as the "probe" she’s screaming, shaking her head back and fourth and shakes at the SIGHT of It.

And finally we have the "Tri-chew"

This one I like, it has small knobby ends that are easy to get into the side of her mouth. However, the feeding clinic was out of them (to give us anyway) so I had to order ours, which is still not here.

So those are some feeding "tools" they all look so weird. If I didn’t have a child with these issues I’d think they we're sex toys or something.

We had Presley's feeding "intake" appointment thursday. I was pretty disapointed.

Heres a link to her full report:

Read the report here.

It didnt really tell us anything we didnt know. The wait list is super long and quite frankly we wont be able to afford it. As a matter of fact when we went in (we have great insurence) we had to pay a co-pay for EACH PERSON that was in the room. Even if they didnt do anything. It ended up being $145. So imagine what it would be for 5 days a week, 6 weeks, 6 hours a day.

We have a new OT so hopefully she'll be able to work on Presley's feeding, rather than us doing the feeding program.

playing

This is a video that is typical of how Presley plays. She has a small attention span and usually doesnt play with toys more than, say, 5 minutes. Puzzles are hard for her. She can do the BIG circle, square, triangle puzzle but smaller peices/shapes she has a more difficult time completeing.

Pumpkin patch

I just wanted to share these pictures of Presley at the pumpkin patch today. She did well, except a few outburst's and what i'd call normal toddler stuff.

Pumpkin patch:

Click!

When i first started noticing things.

I'm a stay at home mom, so naturally i spend most of my time with Presley and get to observer her more than anyone else. I think what caught my attention and i knew something wasn't right, was when she wasn't able to sit up. All my friends children where sitting up way before she was, some even 6 months younger! She was also about 9 months old and not holding her own bottle, hardly doing any of the normal baby babble but i think the shinning example was what i call her "crab walk". When she was finally able to sit up, she preferred to lay on the floor and shake toys back and forth, or stare at fans or moving objects. She had NO eye contact at that time (this is around 16 months or so) and NEVER wanted myself or my husbands attention/affection.

At her 16 month check-up her pediatrician suggested we should think about early intervention, but in the mean time we should have an MRI done. Presley's head was out growing her body. Her body, at the time, was in the 20% while her head had shot up (in 2 weeks) all the way to the 90%. There was concern that she may have fluid on the brain or a tethered spinal cord. I was terrified. Of course, now we know it's just a developmental delay and there's no real reason for her head growth, though shes "grown into it." Weight, height and head size are all within normal average ranges.

So i started doing lots of Internet research and had read that some children have developmental delays due to food/allergies. Her pediatrician agreed and we had a allergy scratch test done. Nothing. No allergies what-so-ever.

Finally we started therapy. In OT we did spinning, Listening therapy and brushing. All with no results, all consistently for 6 months.

We've been doing speech for the last year. We've made great improvement and have got presley to use some sign language and slightly mimic sounds.

This week we've actually started Educational therapy, which hopefully we'll be working with eating/speech, which are my two man concerns right now.

What we have coming up is the initial evaluation for the Feeding Program at the children's hospital of Richmond November 20th.

Then we have her Autism "testing" with the Autism clinic at VTCC, March 5th 2009.

I think I've pretty much caught up everything. I'm sure there's more I'm forgetting, but whatever.

Old videos!

About 5 months old

4 to 5 months old

6 months, first food

Presleys first birthday

Day after Presley's first birthday! In the hottub!

First steps at about 19 months

These are pretty much all the "older" videos i have. My plans are to start recording new ones and try to "catch" particular "signs."

I've started this blog with the intent of keeping track of my daughters progress through therapy, as well as keeping her doctors, family and friends informed about whats going on.

Presley, who has a development delay has been informally diagnosed with Sensory integration disorder. We're in the process of having her tested for Autism or any other related disorder.

As I'm writing this she is 26 months old, we've had her in early intervention therapy for the past year. She is labeled as having a delay scattered between 12 to 18 months. Around 18 months she was seen by a local developmental pediatrician who thought she could have Autism but it could really go "either way." I was not satisfied with his session (an hour long, no bedside manor, no real interaction with Presley) and have made an appointment (March 5th to have her reevaluated by another team.

Here is a bit of what she has going on:
*Little eye contact, hardly turning to name
*Still eating purred baby foods, she gags on lumpy food, she has just started to properly "chew" but mostly swallows food whole.
*She spins in cirlces
*Sometimes hand flaps, hits her ears when she gets mad
*Not very social with peers her age, more connected with adults
*Has a big speech delay, shes at about a 12 month level for speech development. Her words consist of "hi" "hey" and rarley "All done"
*Shes very into being overstiumulated, lights, busy places and a lot going on she thrives in.
*She still wakes up around 1-3 times a night and has a hard time going to bed (she'd rather stand in bed and spin and play)
*Recently she has become very attached to myself and my husband (which is great!) before she could have really cared less if we were even around
*constant teeth grinding

So basically we're going to post videos of therpay sessions, photos of Presley being adorable and other random information.

-Alexandra
(Presleys momma!)