Here is the long overdue update. After several doctor appointments and evaluations we got the paperwork in the mail last week. PDD-NOS is now our "official" diagnosis. However, they have labeled her speech delay as dual, which means it is most likely a result of both her being a preemie and her Autism. She also has been diagnosed with SID (Sensory Integration Disorder), which is very common in kids with PDD-NOS.
With these diagnoses, according to the doctors, our primary concerns need to be her social skills and sensory needs. According to them with the limited speech and occupational therapy she receives in school, her speech should catch up on it's own by around 8 1/2 years of age. The social and sensory issues will be something that she will continue to face throughout her life. The social skills most kids inherently know, like personal space and two way conversations, are foreign to her. Her SID causes her to do things like insist on seamless socks and velcro shoes, to touch everything and move constantly since she is a "sensory seeker," and to taste food with MUCH more intensity then the average person.
We decided to place her on the waiting list for some additional no cost speech therapy, because according to them it can't hurt. She also started attending a social skills group in which she is growing by leaps and bounds. Last week she even shared her beloved Pudder Bear with another little boy in her class. It melted my heart. Soon we're hoping to move on to playing interactively with other kids, eye contact, and role playing. The classes have even been better for me as a parent. Five other mothers and I watch our spectrum kids learning to play and interact through a two way mirror once a week. Each mother has different information on therapies, doctors, and ideas that have been invaluable. My favorite part however is knowing that I am not alone. When I raise a concern or ask a question - at least one other mom knows exactly what I am talking about. Priceless.
Next up on our list to address is her sensory needs. She literally needs around ten times the stimuli from her senses than the average child. Kyrie jumps, touches, rocks, and loves anything messy that she can get her hands into. The list of recommended supplies to have at home for her included a trampoline, messy art, anything with bright lights, a weighted blanket, music, and anything else that stimulates her senses. The doctors also want us to enroll her in an adaptive dance, gymnastics, and/or swimming classes - which we're looking into starting in January.
We have incorporated many of the recommended sensory supplies into our Christmas shopping and Ty even went as far as to decide to install a trampoline for the girls in our basement. We did buy a mini trampoline at a thrift store in the meantime, and Ky prefers to spend the majority of her time on it. Ty and I can not wait for Christmas morning... Ky is going to freak out! She is also getting some art, role playing, and music supplies.
As of right now, that is where we are. We have several other options of therapies, camps, and programs, but until we find a good fit for a sensory class we're holding off. It's really hard to pick and choose how to get the biggest bang for a limited buck.
Overall, things are looking up.