10.30.2012

Forward motion

Its been a while since I've updated everyone on our journey with Jaydn. Part of that is because we have made a lot of transitions lately (moved, new job, started school, having another baby etc) so its been busy. Another reason is honestly because progress is hard to see when we are standing up close. In so many areas we feel like we have gone nowhere while in others we can see sure steps of forward motion.

Moving back to FL has almost been like a "start over" in some of Jaydn's adjustment. She adapts so easily to new environments so that isn't what Im referring to. However the resources for her whole development were not available in AR so now we are getting her caught up with vaccinations we weren't told about, evaluations she has always needed, and getting professional advice that sits more peacefully in our hearts. Its as if someone is hearing us and our observations clearly for the first time. We knew there had to be more to it all than what others were advising us when we lived in AR. Here in FL we are getting a lot of gaps filled in and starting on paths we wanted to pursue 2 years ago! So its both frustrating to think of all the time that was wasted and also hope giving to be in this stage where even more progress is possible. Here is a basic rundown of where we are now:

Progress:
1. Jaydn's social skills have really improved. Our new environment has been so respectful of our unique challenges with Jaydn and they have worked with us to help her learn the proper steps of meeting a stranger, not seeking physical attention instantly, and interacting with peers more than adults.
2. Jaydn's communication is better but not complete. She is at the stage where we (and a few other people) can understand one or two of her words and can piece together what she means to say. Its similar to a baby who starts to babble and mom and dad can interpret their mumblings to others b/c they have heard it more than anyone else. She talks in sentences and will go on and on but we can't stay with her long b/c of the many gaps in her articulation and missing words that would complete her thought.
3. Jaydn started school this fall. She began at our church VPK program which was the perfect starting block for her to receive instruction from someone other than me but also learn that her teacher was not her mother. They work so well with us on healthy interaction with Jay and reserving special attention for us her parents. In partnership to that class setting, I would take her to speech therapy twice a week at a nearby elementary school. They quickly noticed that 90 minutes a week was not enough to provide Jaydn the help she needed. So just a few days ago she was approved to be enrolled in their full time program where she is integrated with other developmentally delayed preschoolers and led by teachers specializing in whole child therapies while receiving education appropriate to her understanding. We are really excited about this recent development and have high hopes for its long term impact.
4. Jaydn can do a lot of things like a 4 year old (ie buckle her seat belt, get dressed, wash her hands etc). She loves learning how to do something new and enjoys feeling independent.
5. She doesn't require constant physical attention anymore but when she gets it, she becomes very clingy very fast so we are still working on helping her feel secure and fully loved without having to carry her around everywhere.


Prayer requests:
1. Attachment is still difficult between Jaydn and family members. She doesn't connect at a deep level so most of the time we feel like we are all just functioning as a family rather than really feeling like one.  We are hoping that as communication increases and her understanding deepens we will be able to pursue a more palatable relationship with her as well.
2. Jaydn is very "black and white." By that I mean you can't tell her to stay in her bed at night for sleeping without her thinking that means she cannot get up to go to the bathroom if she needs to. Despite our explanations of that exception, she will either wet the bed or cry her head off in the middle of the night until we come in and take her into the bathroom. Another example is that sometimes we send her to her room as a consequence of some poor behavior but sometimes we ask her to stay in her room and play until we say she can come out (IE if she wakes up too early in the morning or we need the kids to take a break from each other). But no matter what, she assumes that she is in trouble and throws a fit. She cannot differentiate circumstances at all. Last example: yesterday we were playing outside in the cooler weather and she started coughing so I told her to sit down and take a break b/c I didn't want her to get more sick. She interprets that as being in trouble b/c Im asking her to stop playing and sit down so she went into melt down mode. I tried to explain that I was trying to help her stay healthy but she can't comprehend that. Its difficult when you can't communicate the differences of situations to her b/c of her lack of understanding at this point.
3. Jaydn's speech is likely effected by the structure of her lower jaw jetting out so far and the constant intrusion of her tongue so some medical professionals are projecting she will need a jaw surgery in the future which typically takes place during the teen years. Until then we can only work with what structure her mouth has now and try to improve her articulation as best as possible.
4. Jaydn still catches a cold about every 2-3 weeks and while they are rarely cause for concern, she has a very loud and gagging like cough tendency which can be a hinderance to sleep for everyone.

Here are a few of Jaydn's favorite things: books, baby dolls, cars, playing puppy or baby, bubbles, swimming, food, watching a TV show or movie, doing back flips off the couch, washing her hands, riding bikes, and laughing.

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