Saturday, January 12, 2013

Conflicted

Lately I've been thinking a lot about a story I've heard at some point in my life.  It's a story about a person who is drowning in water and goes something like this:

  • A boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
  • A second boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
  • A third boat comes over and the captain tells the person to hop in and the person says "No, thank you.  God will save me."  
  • The person dies, meets God and asks "Why didn't you save me?"  To which God replies - "I sent three boats for you and you didn't get on any of them!"

As we start to prepare for the transition of our daughter from pre-school to kindergarten I find myself conflicted about where I want her to land.  Full inclusion?  Semi inclusion?  Separate school?  I find it hard to believe that I'm even thinking anything but full inclusion might benefit her, but my gut tells me that we should be open to the possibility of a separate school for a short period of time while she learns the basics of reading and communicating with her talker.  My open-mindedness comes as a result of meeting more than a few children in our area that have needs somewhat similar to my daughter and the stories I've heard from their families.  It's sort of like the 3 boats coming and giving us some great insight and I don't want to ignore their input like the story above.

The good news is that we don't have to figure this out alone.  There are a team of people in our school district that will come together to get to know my daughter better and present us with some options.  I've heard very positive things about our district and our experiences have been very positive overall for the pre-school program and expect it to continue as we transition to school age services, but we are not naive and will keep a healthy does of skepticism due to rumblings of school and special education services budget cuts.

My initial thought is to ask for an evaluation from the separate school that specializes in cerebral palsy.     Previous evaluations determined that she is mostly on target or ahead on some cognitive levels and very obviously behind on all physical levels, making it very hard for her team to get a good assessment.  This is one instance where I believe going to experts skilled at evaluating children with cerebral palsy will be a better choice than teachers and therapists filling out a cookie cutter evaluation and assessment process (such as a Carolina) that does not take into account my daughter's physical and hearing impairments.  I guess that is where I will ask the school district to start as we begin our conversation around kindergarten placement.

I find school placement decisions to be one of the most challenging parts of raising a child with multiple disabilities and I know I'm not alone.  Reaching out to other parents and learning from some of their experiences has been so helpful so far.  If anyone here has experience to share I'd love to hear them in the comments section.


- - - - - - - - - - - - - - -

Kristina lives with her husband and two daughters.  Some days all it takes is getting the day of the week right to make her feel successful.  You can find her blogging at http://howlifehappens.blogspot.com/

5 comments:

  1. This comment has been removed by the author.

    ReplyDelete
  2. Thank you for posting this. I fully support the goal of inclusion. My son is globally developmentally delayed and hard of hearing, so as we are looking for his preschool I find myself conflicted that the obviously best classroom for him is at the state deaf school - gasp the institution. But the classroom is amazing and inclusive with typical hearing peers and children with all levels of capability. That "institution" is offering him a much more inclusive setting than his home school system that offered the separate classroom [trailer] isolated in the typical school with no sign language. So I've tried to be at peace that we fight for inclusion in our community but I don't make my kid suffer to prove the point.

    ReplyDelete
    Replies
    1. Sometimes the best fit placement isn't what we expected, and that can be hard to accept. It sounds like there is a lot of inclusion offered at the state deaf school and that is wonderful! My daughter is deaf and uses cochlear implants in addition to her cerebral palsy. I've been thinking the deaf program placement, too, might be an option for us since it is a smaller classroom size and allows for longer "processing" times. I've talked it over with her hearing therapists and they agree it could be an option.

      Our children change so often that I'm trying to keep placement in perspective. There is a reason we have annual IEPs to review placement - what might be a good fit one year may not be the following year. Perhaps more full inclusion may be a better fit over time. I don't know what the future holds but I'm not giving up my vision of full inclusion as the goal for my daughter. It just might happen, though, that we take a detour to get there!

      Delete
  3. I was so pro inclusion I subjected my son to three years in public school. Only to find out the hard way he needed something more individualized than the district could or would provide. So he is now in his second year at a private school where he is thriving. And while it may seem crazy to take him out and isolate him further the self confidence he has developed and the devices he has revived are astonishing. I regrt not doing it sooner. If you do choose inclusion stay on top if what is going on intje classroom. Everyone is different. So there are no easy answers

    ReplyDelete
  4. My daughter has CP as well. Her Physical Therapist says that inclusion is great for "normal" kids, but not always so good for our kids. When my little one goes to school I will be looking for smaller classroom and if I get to cherry pick she will be going to the deaf and blind school as I feel that they would be the best fit for her. I am pro inclusion, but don't think that it will be the best fit for my child.

    ReplyDelete