As most of you know we asked our school to repeat Tommy's kindergarten experience and his kindy teacher asked for him specifically to return to her classroom. That, as most of you know is a energy and heart investment. And to get another year of kindergarten for Tommy has been wonderful these past few months. We are thankful for teachers that 'get it'.
There are many specifics to the IEP we are still examining and searching ourselves for what is best for Tommy's access to his education. There are many 'feelings' (really stretching out the 'eeeee' sound there) and honestly I'm pretty disenchanted. And generally, I'm a really optimistic person but this one really has me.
My personal perspective is that Tommy's access to his education is controlled by people sitting around a table who mostly have very little and intermittent experience with Tommy. Half the committee knows him well, and half the committee has very little knowledge of how he accesses his education.
I don't believe inclusion will ever be successful unless there are co-teachers in gened. I wish, with all my heart, Tommy could stay in gened longer but realize the design of our district's teaching doesn't support special education kids in the classroom. And since we as parents represent Tommy at the discussion, all I can say from his end is that transitions... push into gened for circle, pull out for life skills rest and work stations, push in for music, push in for enrichment, pull out for slp, etc create havoc to Tommy's extreme dislike of transitions.
He is asked to make more transitions during his day than a gened student. Why do we do this to kids in life skills who detest transitions? Because we try to disguise it as 'inclusion'. Because we are afraid to say education is still segregated? Tommy should be in your classroom
IEP's always have an element of the unknown, different agendas (even though it should only be Tommy's education), levels of knowledge about Tommy, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. So right now, I don't even believe an amended IEP is really even an option. Visions of David vs Golliath come to mind.
So when I was reading this article. Mostly to refresh my own memory of some facts. While meeting with some new families with children with Ds over the recent few months, I had forgotten some of the 'facts' because... well, quite frankly they don't matter anymore to our family. I can't recite to you all physical differences Tommy has due to Down syndrome, because they don't appear to us anymore. But when I was reading the article, #9 really stood out to me.
From the article:
#9. Mothers of individuals with Down syndrome typically exhibit better psychological well-being profiles in comparison to mothers of individuals with other intellectual and developmental disabilities. There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children and 11.25 percent for families of children with other congenital birth defects.
Now that my friends is ground breaking news to me, lol. Personally I'm really hoping that happens for me soon! Because at the IEP meeting I was not exhibiting 'better' psychological well-being. Insert image of a Siamese cat being tossed off a sky scrapper here, lol. David vs Golliath IEP issues always have kinda made me anxious. Tommy needs to communicate, but the supports are withdrawn. Tommy needs behavior modifications, but it's minimal in the IEP. And I'm not sure the amendment process would work, as we have taken that path last year and it was exhaustive for little benefit. His education is just taking a different path, all is not lost.
After reading his prior book Outliers, I really wanted to read his new book, especially after I saw the reviews included insights on disabilities and the title was David vs Golliath. "The challenge is that the people who might appear to be underdogs or to be burdened with disadvantages actually aren’t."
Us as parents hope that Tommy's access to his education will focus more on seeing his potential and ability and support him, rather than continue to close doors to ways he is accessing his education.
I pray for the school district, as their load is limitless and resources slim. I pray for wisdom in knowing what pieces of Tommy's education to focus on and which to let slip. I am thankful for Tommy, who was perfectly made and who's joyful smile gives our family hope and unconditional love. IEPs come and go, and even in this process and analyzing all this paperwork we will focus on the good and find joy and ways to support his team of teachers and increase our homeschooling for him.
"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18