Payton is by far the pickiest eater in our house... behavioral as it may be. Her speech therapist spends about 15 minutes of each session working with her on eating different textures... and trying to do so without gagging. She has a very sensitive gag reflex... and if she had it her way... her diet would consist of the following...
- chicken nuggets
- french fries
I get on these little kicks where I decide that I will not accommodate her behavioral meal choices anymore... and give her what the rest of the family is having. Because I know she can eat it... she just would rather have chips. And sometimes... when I don't feel like fighting the fight... I do make her a separate meal.
A few nights ago I
Payton woke up in the middle of the night vomiting up her entire dinner. Like... several times. Did she have a bug? If she did, no wonder she didn't want to eat. Or was it her less than desirable chewing and swallowing technique of this food that she had no desire to eat? I am afraid maybe the food never made it completely down her esophagus.
Hopefully it was just a bug.
Even though she seemed to be feeling fine... I kept her home from school and took her in to be swabbed for strep. Negative. Days like that are some of my favorite times spent with my kids. Lazy day around the house... just the one child and I.
Taking care of them... being a momma. Snuggling in bed for afternoon nap.
Payton... close your eyes and pretend you are sleeping.
Haha... love that chick.
I received the identification bracelets I ordered for the girls in the mail the other day. There has been a lot of discussion about what information the bracelets should actually contain.
Bracelets ordered from here.
On a whim after the great Barbie jeep escape... I ordered them with name, address and the cell phone numbers of both Kyle and I. After thinking it through and getting feedback from a few police officer friends... I think I need to order another set of bracelets with just our phone numbers on them.
And while I would love to have the girls wear these bracelets every minute of every day... I am not sure it is really feasible. I am just not sure... I am struggling with this. And the bracelets obviously will only go so far to help if the girls did end up missing... depending on the situation and whether or not they are found by the right person. That said... I am glad to have them for times when we go on vacation or to an amusement park... and other places of the like.
Meanwhile... I spoke with a Deputy Sheriff friend of ours about the Project Lifesaver. Unfortunately... our county has a waiting list due to budget restraints. So... this is not an option for us right now. We could get our own bracelets... but I am still on the fence... and I am not sure why. I don't know... I just want my girls to lead their lives as normal as possible... but at what point does it become too late? I do think... however... that I will be getting this for those times that we need it.
We are knee deep in all things IEP, FAPE, IDEA, ESY, LRE, PLOP*... and so on. We have Payton's kindergarten eligibility meeting in two weeks... and I am anxious, to say the least.
I have consented to the psychological testing for Payton and I am not sure if that was the right thing to do. I am feeling at peace with the decision... right this moment... but in five minutes I could read something that will change my mind. The outcome of this testing will determine her label... she will lose her DD* label... and I am okay with that... as long as it does not affect the services she will receive.
I could go on and on... but I won't since the end result is all that matters and I will update on that once we are there. If you are a parent or teacher or anyone else that is involved in inclusion of a child with Down syndrome... please feel free to join a new group that I created on facebook. We are up to 326 members nationally... well, even internationally... and there is a ton of great information.
IEP = Individualized Education Program
FAPE = Free Appropriate Public Education
IDEA = Individuals with Disabilities Education Act
ESY = Extended School Year
LRE = Least Restrictive Environment
PLOP = Present Level of Performance
DD = Developmentally Delayed
Headed to California later this week for the national Juice Plus+ conference... so excited. The conferences are always so inspiring... and they remind me why Juice Plus+ is such an integral part of our health.
We are also having a DS mommas meet up at City Walk while I am there... email me if you want to join us!
Hoping the food issue resolves itself soonReplyDelete
When we have gone somewhere like Disneyland, we take a big black permanent marker and simply write our cell phone number on the back of Piper's hand. But I'm lovin' these electronic devices.ReplyDelete
I am just getting into school issues with Avery and am at a loss...she starts k4 next year...My head has been spinning for the last month and Im sure its only going ot get worse!!!!ReplyDelete
We got our bracelets too. I also put our names, address and cells of both Dan and I.ReplyDelete
As you know, we are in the same boat with the infamous testing. Assuming (big assumption) his results are what most kids with Ds test in...he too will lose the DD label. I'm struggling too my friend. Seems inherently wrong for us to allow that label on our child BUT, in their cases...labels = services and we both know our kids do need services to succeed. I had a conversation today with a friend who who is a special educator specializing in ABA for kids mainly with autism. She knows my Danny very well and I gave her our story. She encouraged me to have him tested and to allow the label. She encouraged me focus on his services, IEP and goals rather than just the label. She said good educators would NEVER expect less just because of a label. Hugs across the miles my friend...we are standing there right beside you trying to work our way through this as well. I'll got first on the 29th...and I'll be sure to let you know all that happened to help you on the 30th :)
the bracelets...cute and functional :) and the whole school thing , maggie rae is only 21 months and i am already worried about it !ReplyDelete
My aunt has Alzheimer's and my parents bought her a locating bracelet. She kept taking it off so my father finally put it on her walker because she can't travel without that. If anything, the bracelet gives my parents a little piece of mind.ReplyDelete
Best of luck with your school decisions. I know that can be tough.
Stalking old posts on your blog ... ordering ID bracelets for the girls, before we take a vacation this summer.ReplyDelete
Thanks for sharing the info you found with us :)