I am back in the saddle of Early Intervention and not pleased with the information coming out. The initial phone call to have someone in my home was quick which was a nice response. I then got a call from the Nurse stating because Emma has a VSD and ASD she would be doing the intake for medically fragile. She came out and explained the program, giving me all the literature about rights, responsibility and program ways. It was all clean rehearsed and PRE-WRITTEN, my choices pre-chosen. I am VERY AWARE of early intervention; the most critical part for families who have never had to deal with children and insurance was completely ignored. When it came to signing for the agency to bill insurance for their services she never informed me that I needed to check with my insurance company for caps on services. That it is an ENTITLEMENT PROGRAM for ALL FAMILIES and that I might use up my allowed therapy in the first year of life and not have enough to carry my child through until she could get on to waiver services. Actually the boxes stating I wanted them to bill were pre-checked and she didn't mention anything other. This concerns me for "new" to this system families. I then listened to her complete explanation of the program...Nothing any of their staff can say to me is anything I do not know. I do not need their services other than therapies and if THEY are planning on making decisions for MY CHILD when I know way more about raising children with Down syndrome than they do, would their suggestions near the same as mine.... It has been my experience their decisions are backed by financial decisions and not what is best for my child's growth and development. This all proven by the condition of children entering school today whom have not been provided early intervention as they had in the past. Some kids not ever getting actual OT therapy until reaching school at three years of age and way behind instead of a little behind. I will not play this game. I know how to get OT, PT and speech and I know that getting services provided in the home is best. This offers us to use our home environment as OT all the time between when the OT person is here. That the older children will see how to position her in the swing, how to have her arms when she is doing tummy time on the wedge... that as much tummy time as possible is BEST..Our home is not the "usual" home so we do have therapy equipment many homes do not start out with, but can get.

My other comparison is that a family called me a week ago that has been through Early intervention process recently and now trying to figure out how to transport their one child to therapy all week so many miles away with another active toddler in tow and the economy in the shape it is for gas and toll expenses. When I brought this up to the nurse she assured me the family must have requested they get out of the home services because Early Steps is in home based priority, unless the family opts to have it in a center. SO my next question was how many OT, PT and speech people do they have to provide to the tri-county area which is actually many more than three counties and LOTS of baby's. The answer..ONE (1) UNO!!! of each. So this might mean a visit 1/4ly or once a month depending on what the TEAM decides. TEAM...the new parents has their head ten feet into grief, disparate and confusion trying to look up each new word said to them, surfing the Internet for some kind of sense in their life...... and then we have the Early intervention staff who have funding issues which are boldly posted all over that they have had funding cuts...so who is the first to loose...THE KIDS.. the client....the intended purpose for the funding in the first place. Don't send me a nurse..Don't send me people who have no idea what APD (Agency for persons with Disabilities) which is the next level of support when my child turns three...The employee sent to my home did not know and asked me what it was... I am sure she couldn't recite it to the next family because the interest wasn't there when I explained it although the family should 100% be informed about APD prior to their child turning three. Ok, you get the point..I was not happy with the services. I have no need to be in the program. I know more than they can offer to my child. Why would I want people less informed than I deciding on how much support and service my child should get when I already know they do not have adequate employees to provide adequate service.. A no brainier.

So that was my Friday....

Today I have a little break. Michelle picked up Emma for an over night and I am blogging...LOL and doing 20 loads of laundry after a long nap while the TV was on the Hallmark channel.. life is good.

Tomorrow is a family day which all the children will be together for spaghetti dinner and bid a farewell to Kory who is moving to Illinois. It is Jordan's birthday actually but we are celebrating next weekend for his party. It was too much on my plate this week and he really wants a pirates party. It will be just fine next weekend. a small cake and celebration tomorrow with the big ship coming in next week.