No, it’s not my Myers-Briggs profile (thats ISTJ, in case you were wondering).  IFSP stands for Individualized Family Service Plan, it is the 0-3 yr. equivalent (roughly) of the IEP (the Individualized Education Plan).  IEP’s are used by school districts to designate developmental and academic goals for students with special needs, and then to establish the supportive accommodations and supplemental services the district agrees to provide in order to help the student reach those goals.  The IFSP is the plan used before a child becomes the responsibility of the school system, from infancy to age three.

Today we had the 6-month review for Hope’s IFSP.  Because of Hope’s diagnosis she is considered “at-risk” for developmental delays and so she qualifies for early intervention services in order to help her develop as normally as possible.  The IFSP is coordinated through the Central Valley Regional Center (CVRC) which is responsible for making sure that Hope gets the services that she needs to reach her goals and making sure that those services are paid for.  Hope’s goals address pretty basic stuff at this point, at her original IFSP meeting about five months ago we wrote that we wanted her to be able to roll over, express her wants and needs, lift her head…things like that.  She has actually made tremendous progress towards her goals and has achieved many of them — mostly in the last month!  

So today we sat down and reviewed where we’re at and set goals for the next six months.  Some are a continuation of old goals, for instance, Hope has made a lot of progress in terms of expressing her wants and needs but we are still totally clueless when it comes to things like knowing when she is hungry.  Since she has just about mastered the rolling over and head-lifting goal we want to focus on getting her to sit up and to improve her head control.  We’ve been working on grasping and holding objects in Occupational Therapy and to that we’ll now add a more specific “eating” goal.

It is through her IFSP that Hope is receiving her Physical and Occupational Therapy, and other Early Intervention Services and CVRC has contracted for those services with Exceptional Parents Unlimited.  EPU provides the therapy and both her early intervention specialist and Physical Therapist were present at the meeting today and offered their input into her next goals and developmental progress.  We are so fortunate to have access to EPU, they have been absolutely wonderful to us.  Initially we had PT and OT scheduled through Children’s Hospital, the PT seemed o.k., but the O.T. made a really bad first impression (she saw Hope for 45 minutes, concluded that she “didn’t really know what else” she could do with us, then scheduled us for weekly sessions and billed our insurance $450).  

Shortly after that I toured EPU for the first time and it was a no-brainer, this was definitely the place to be and since Hope qualifies for services through CVRC, we’ve been able to do everything at EPU with people who are not only great therapists but are experienced in dealing with special needs kids and their families…and Grace is fully included in the process too, EPU is her “school” and she looks forward to going every week for her toddler group and has make a lot of progress herself.  That was one of the things that was really important for us, and the nice thing about the IFSP is that it addresses the needs of the whole family, we were adamant that Grace not be excluded.  I didn’t want it always to be “mommy taking baby-Hope here and there and leaving Grace behind.”  I actually don’t think Grace has any idea that EPU is for Hope, it’s all for her as far as she knows and that’s just fine by me.

When Hope is two-and-a-half we’ll begin the transition process where responsibility for her services will shift to the school district.  From what I’ve read that process can be a bit of a headache for PWS kids.  Because PWS is not an automatic-qualifier for special-ed services we’ll have to demonstrate that Hope is deficient.  If we’ve done our job though, it is very likely that she will not be deficient at the time of transition and could be rejected for services.  So then you have to go to bat and fight for there not to be a break in services, convince the powers that be that the reason she is not deficient is precisely because she has had services all this time and to cut them off now would be counterproductive.  Sound like I’m ready for that challenge?

Tammy and I are very lucky to be teachers.  I listen to the other moms in my support group and feel bad, the whole special-ed process can be so intimidating.  And these are good moms who only want to be advocates for their kids, but are very self-conscious about going overboard, not being objective enough, annoying teachers…not wanting to cross that line between good parent and pain-in-the-you-know-what.  Our professional experience makes Tammy and me a lot more confident in knowing where that line is and much more comfortable with the terrain on either side of it.  I do wish I had paid better attention in the special education course I had to take to get my clear credential.  I never really had to deal with the legalities of special ed where I taught (all of my kids were special ed, regardless of whether they had the paper to prove it), so I pretty much b.s.’ed my way through the course because I thought it didn’t apply to me.  Wrong!  Good thing I’m a quick study.

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