Cliffs again

This morning Taylor had a visit with his physical therapist and his early education interventionist... or that is the best title I have come up with to describe her. Anyway, we got to talking about our up coming bid to re certify Taylor for the Katie Becket program. This program is designed to help families like ours deal with the financial and physical burdens of having a child with significant disabilities. Every year the child needs to go through the process of re certification in which they must prove a significant enough disability to satisfy the requirements of the program. They look at everything pertaining to his medical status. I have just about completed over eight pages of "Describe how your child x" type of questions. I have filled out medical release forms for all of Taylor's specialists... his pulmonologist, Ear-Nose-Throat, Gastroenterologist, Pediatric Ophthalmologist, Pediatrician, Physical therapist, Occupational therapies, Speech Therapist, Dietitian, Early interventionist, and Physiatrist... yes this whole team is really just for Taylor.

Anyway, I have been talking with his therapists about their summaries for the recert. process. Basically, I have asked them to help us with this process by placing a particular emphasis on what Taylor really needs to work on yet. Why? Well after seeing how many specialists Taylor has, it may be hard to believe, but on paper, he looks super healthy... compared to last year anyway. Our conversation eventually (naturally) lead to a description about what age are Taylor's abilities falling into. I have not received this type of info since I decided not to bring him back for NICU follow ups in January. I estimated that he was at least six months delayed... based on my vast knowledge of the subject...sarcasm... So his PT offered up a suggestion this morning that she could argue for 10 months. She also pointed out several ways in which he remains significantly delayed for speech and language, and well eating... For the purposes of Katie Becket, this is very good news. Hopefully they can all write summaries of Taylor that are as convincing of his need as I was today. Personally though, I had never put Taylor eight months delayed. She also pointed out that preemies are generally expected during this stage of the game to be somewhere ahead of their adjusted age, yet behind their real age, which gets closer and closer as they approach the age of two... doesn't give Taylor much time to catch up. (Although, at the rate he has been going, I still have hope!)

In addition to all this good news, I learned that Mary, the interventionist, has been thinking about re-evaluating Alivya... not because she thinks Livi is ready to be off the program (which they gave me the option of doing about six months ago) but because essentially, they think that her skills are slipping. Lisa, Taylor's PT, has been watching her gross skills since she started thinking about crawling. She is just now starting to think that she might need some extra help. (Although in all fairness, she has been doing a little work with her at each of Taylor's sessions for a long time). Mary also thinks that she not progressing as well with speech as she should be. Having only two solid words, three at a stretch, they think she may benefit from some therapy there too. Lastly, I have been asking about her defensiveness to touch for some time. I actually had her re-evaled in the spring, but it was determined that her delay was not significant enough for actual services. So I guess I am supposed to sit by here while her skills dwindle until she absolutely needs service, then I can fight for two battles with Katie Becket.

I guess today was a hidden rocky cliff on the path that I thought looked pretty grassy and down hill.