Wednesday, February 06, 2013

What's going on with me?

The world of childrens therapy is mystifying.  The Strong Will Wonder has been getting early intervention through our township since she was 2 1/2.  Her therapists has made a number of references to her being on the spectrum.  She is not autistic, but on the spectrum.  However I look at all the identifying signs and the only one she falls into is that she's not great at meeting our eyes when we speak to her.  We've been working on that and she has been improving.   I (husband is not that helpful) decided therapy once a week was good, but we needed more so we're using our insurance and going to an occupational therapy company for children (th.eraplay) who have various special needs.  I tried to get government insurance for her because the early intervention person pushed it so it would fund what she called wraparound therapy.  We were rejected since we have insurance already.   I called a company that offers public assistance for children and youth.  The contact person sent me the information that I needed to proceed forward.  To go forward to have to apply for supplemental social security income (ssi) as part of medical assistance for our child.  I have to take the SWW to a pediatric behavior specialist and have her tested to find out if she is definitely on the spectrum.  Then I have to submit the doctors form that says she has this condition with the application.

So yesterday, we were at Th.eraplay and I asked her therapist directly if she though the SWW was on the spectrum, explaining that her early intervention counselor had referred to her that way a number of times.  I then said would these questions even come up if she was a boy because her behavior is much more expected in boys vs. girls.  Girls are typically calmer, etc.  She said I raised valid points.  She said is she was in my shoes she'd be ticked that the SWW will was referred to as being on the spectrum because she didn't see any symptoms other an not being great at eye contact.  She said she would get some names for me if I wanted to investigate it further, and that she didn't think her behavior was being on the spectrum that it was more her birth situation.  Her, bio mom's roommate smoking meth in the apartment and she smoked cigarettes while she was pregnant.  Any emotional stuff her bio mom had been going through while pregnant, etc.  So no, the SWW was not born addicted to anything these are side affects now that she is overcoming.

Anyway, I guess I'm a little stumped as to how to go forward.  Do we continue with therap.lay (we do see improvement) and early intervention.  Should I switch pediatricians?  We go to a local practice that is connected to CHOP, but I haven't been that impressed with them.  All we do is talk to nurses.  The nurse says she'll ask the doctor and call me back.  Th.eraplay had a listing of pediatricans they recommended.  I'm mulling over switching, but switching peds is a big deal.  It's not like for me where I and just make an appointment and that's it.  We do have a personal choice plan that costs a lot, but covers a lot because of my health condition we cannot skimp.

Speaking of health condition, my new med is supposed to be out w/FDA approval in April  BG12.  I cannot wait!  My doctor has me and who knows how many other patients waiting for this new med.  I go to a neuro at University of Penn Hosp.  We are lucky in this area to have so many good doctors and health care providers in this area.  And there is a new vaccine that is currently being worked on. It is phase 2 trials :-).  So, if I can just stay healthy and on top of all this until this med comes out I'll be a happy camper.

I guess that's all that is happening here.  The SWW is always testing to see how far she can push.  What do you when you adopt a child and she is SO different from you?  I love her, and do my best to parent, but she is SO VERY DIFFERENT from my husband and I.

            



1 comment:

twondra said...

Hey sweetie! So glad you shared with me. I'm always here for you and always supporting you! I hope the new drug works for you. :) ((HUGS))