Meet Haley

This is Haley....

Haley is now 7yrs old. (I think she was 5 in this picture). She is adorable. Haley is by far our most affected child with FXS. Her "official" diagnosis reads as follows; FXS, Autism, ADHD, Mood Disorder NOS, Anxiety Disorder NOS. She is completely non-verbal and uses a combination of sign and a speech output device to communicate. (and I have become quite the telepath when it comes to her) She eats only pureed food (for some reason she stopped chewing and we don't know why). She is also pretty aggressive. As with any of my kids I am used to meltdowns and such but she takes it to a whole new level. I equate it to cage fighting without the cage. (hard to believe with that pretty face I know) There have been many unprovoked attacks in my house because of unknown triggers or even known triggers that Haley has started. There have been two inpatient stays in the psych unit to figure out meds and several trips by squad to the hospital just to get her under control. Not an overly pleasant experience. I have been hit, kicked, bitten, head-butted, bruised, hair pulled, shoved, clothes ripped etc. Needless to say taking her out is difficult. Let alone the staring. (I won't start on that one) Now that is all the stuff I don't like talking about, here is the stuff I love talking about.......
Haley has the greatest smile and laugh. She has a great sense of humor. She loves the water and loves to swim. Her all time favorite thing is music. The louder the better. She loves to listen to P!nk. She likes to watch lights and fireworks. She loves to be tickled.  Swinging outside and rocking in her chair with her weighted blanket are fun. She craves attention, she doesn't like to be held but wants you to watch her all the time. She is totally a little performer. She is incredibly intelligent (I know there is so much locked up in her head I just wish I could get it out). I know she has her issues and I know she can be difficult to deal with but she is just one of those kids you can't help but love.