Monday, February 22, 2010

As of late

So....what's been going on? Well, we had a visit on Feb 10th from Infant Toddler Services of Johnson County (ITSJC) to evaluate Kylie and see if she qualifies for services. Our doc from the Cleveland Clinic ordered for Kylie to have Speech Therapy and Behavior Management. Even though we have orders, the folks from ITSJC are still required to do an evaluation of their own.

They will be back on Wed (Feb 24) to do the Speech Evaluation. I think it will be shortly after that when we know what/if she qualifies for through their program. I am really anxious to know where we will go from here. I have emailed our ITSJC coordinator since the visit on the 10th, and she said she thought they had several things they could help us focus on. I'm not sure if that means things for us to do with her, or things they (ITSJC) will be actively helping us with. So yeah, a bit more waiting to find out where we go from here.

In addition to getting things set up through ITSJC, Kylie will also be evaluated at Childrens Mercy. Our apptmt for the the Speech is tomorrow, and is expected to last 2-3 hrs. Oh my, it will be a long day. Kylie is used to getting a nap around 9:30, and our apptmt isn't until 9am. Let's just hope that the new environment and toys at the hospital will be enough to keep her well entertained.

Secondly, we have an apptmt for the Developmental/Behavioral stuff on May 3rd. I know, it isn't real soon, but they are really booked up. We are trying to work on getting it moved up, because my goodness...I can't imagine how well we will survive if we have to wait until then. I mean, the fact that the doc ordered this is because it is necessary, and a few months of waiting could mean things will be that much more difficult for us to begin working on getting Kylie on track.

Let me enlighten you all on what I am referring to. Okay, so Kylie has reached a place to where she has begun pointing at everything and saying "oooh, ehhh" or something to that effect. I was so excited to see her pointing things out and wanting us to tell her what more things are. Anyhow, that has quickly turned into her yelling and screaming at everything she points at or does. It is draining to say the least. We are trying to figure out what she needs help with and what she is wants to tell us.

This isn't the typical fussing and screaming that most parents go through when their child wants something that they can't have or whatever. This is our little girl that is having a hard time understanding things and communicating things to us. She should be saying a couple words by this point and have more consonant sounds, and she doesn't.

It just breaks my heart, because the last few days she screams at everything. I so badly want her to really get things and grasp new things better. In the past we would notice that she would get frustrated by not knowing how to work a new toy or make it do whatever she was wanting it to do. We would try and help her with it, and when she wouldn't allow that we would have to put it out of her sight, otherwise she would just continue to scream in frustration and then throw it, and whatever else was in reach.

Right now, she is getting frustrated and overwhelmed with more than just trying to manipulate a toy, she is screaming at books, and the tv (which always has to be on, or she screams), and flash cards, and everything she touches.

We have also both noticed that in her Kindermusik class she has become less interested in what is going on around her and the other kiddos. She would rather run the room and not be part of what is going on. That makes me sad...makes me wonder what's going on in her little head, and what she is feeling, and why.

So yeah, if we could speed up the Developmental/Behavioral apptmt that would be AWESOME! We need help with finding out how to best work with her so that she can continue to learn, and grow and develop, and have the same opportunities as every other little kid out there. We also need to figure out how to manage the Stereotypies, and determine if most of hers are triggered by something and if so, how to redirect her to doing something else.

I know the sooner we get started, the better chance she will have to be where she should be. I want to see that growth. I feel like we have been at a standstill, but its like I didn't notice it until, I feel like we are going backwards a bit.

So yeah, super anxious to get started on helping our little mama ( I think I call her that more than I call her Kylie) get where she needs to be.

K, I don't like to post with no pics, so here are some from our snow Valentine's Day. We thought we would take her out, and once again she didn't really care too much for the snow.

The last pic is my favorite! I love the eyes, and the start of a smile, and just the beautiful little girl that she is.


JSmith5780 said...

Have you considered PECS for her? Just a few pictures (a cup, food item) may be enough to help her get her wants across to you and ease her frustration. If you are interested, let me know, I have a disc full of pictures you can use.

Also, IS alone generally qualifies for receiving services.

MJStump said...

I have heard of this a Developmental Psych class I took. We have flashcards (she usually throws them though), do you think the PECS is better?

Unfortunately in our state the IS diagnosis got us nothing, hence why we are just getting started on things. It's like we have to wait until things are not okay, and then wait to be seen, and then wait again for therapies...not fun.

JSmith5780 said...

Not hugely different than flashcards but oyu could take a few and put magnets on them so a picture of a cup, a snack, etc are right on the fridge. She'll learn to go to the fridge, get the pecs card and give it to you.

Mostly because they are smaller and you can attach them places they'll be easier to use. Make sense?

MJStump said...

the PECS sound better than the cards we have, so i'm definitely interested in the disc of pictures that you have.

anything that can help is great. i would rather have too many things to choose from than not enough.

thanks so much!


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