So much has happened during the last several years. Some warm joyful moments are etched into memories, some have been documented, and some gracefully forgiven and forgotten.
I could write a 10,000 word blog just on the changes that have taken place during the last four months, but I won't :) Instead, I am going to focus this writing on one small area that I'm working on now, and try to document what comes of it.
Last week, we had K's IEP meeting where they presented the results of her IQ testing. They used two different tests, one that is a standard measure of IQ, and another that is developed specifically for children who are non-verbal compared to their typically developing peers.
The results, though not unexpectedly low, still sadden me. I know it's just a number, and certainly a number is incapable of limiting my daughter, but I can't help but wonder what her number would be if I were able to spend more time teaching her myself. If we could afford better therapies, better educational tutoring classes for her. If we had access to private schools.
Refrain from quickly punching out a comment that is encouraging ("You're doing wonderful!" "You work with her a lot!" "Her IQ test doesn't mean anything!") until you finish reading this posting.
A month or so ago, I started researching a grant opportunity for a non profit that I work with. In the grant, I wanted to show concrete research and statistics that could prove how math and literacy programs increased reading and math aptitude for children with Down syndrome. Surprisingly, after **HOURS** of obsessive research, emails to special education teachers, coordinators, directors of disability advocate groups, and reading, I found very little hard data addressing this.
And grants that provide funding for programs for people with Down syndrome to increase their learning abilities require proof of these programs working. And to get hard data on whether programs work, you need grants that provide research dollars. And to get those research grants, you need preliminary research and data that show that its possible that it could be a good use of time and money spent researching it. It's quite an endless circle of information.
My point in this rambling is... why not just do it myself? I'm such a thinker. I often think and think some more, until I've exhausted all of my energy thinking, and have very little left to actually "do" it. Never mind that during my thinking process, I usually talk myself out of doing it.
Now I know that this research won't be done with proper scientific methodology.
But my research hypothesis is this: If I, just a layperson with access to good quality reading, math, and problem solving games, spent 30 minutes a day one on one with K, I could increase her reading and math levels, thus raising her IQ by some measurable degree in 60 days.
To control for "teaching for the test" I was careful to explain to her IEP team that I did not want to know how they conducted either IQ test (which questions are asked, how they measure IQ, which 'games' are played, etc) I had them send me the IEP materials that include the IQ test results through the mail, and won't open it for 60 days, when she'll be re-tested by the same person.
I won't be doing intense therapies, because part of my hypothesis is that XYZ reading program, or ABC math program isn't really the point. It's one on one teaching, using fun and positive reinforcement to achieve education related goals.
I will document which activities I do with her each day for the next 60 days. I'll also include information from her teachers on her amount of growth from mid October-mid December when she was in school without any one on one work at home, although I won't have specific assessment tests to document that progress.
My hope is that if I see substantial growth with K, that I can encourage more parents to do this with their children. Possibly that a university will see value in doing a controlled research study on this, and that more grants will be made available for people with disabilities to have access to better learning therapy programs at an affordable rate.
Or maybe it will just be a fun way for me to bond with my daughter :-) I think it's a win-win experiment.