On Wednesday, however, when we went in for her lumbar puncture (which went fine except for extra low blood pressure before she woke up from her anesthesia - it's always something!), her ANC was only 600 - just a notch above neutropenia and a full-blown crash from the 1900 she scored on Monday. So a more likely explanation is that she had a virus that caused her body to ramp up her ANC for the fight, and is now depleted from the effort.
All that is to say, Hope couldn't go to the end-of-the-year picnic today. So she exits this school year with little fanfare...
But as I predicted just two months ago, the school year was short but sweet. Friends, exploration and discovery, and just a taste of independence.
While I've been reflecting on Hope's return to school, I have been simultaneously inundated with stories and questions about the state of inclusion across the country. I recently joined a Facebook group about inclusion for kids with Down syndrome, and with almost 9,000 members, it is an active discussion forum. For me, it felt like another step back into the world of the living, where we need to plan for the next steps, not just focus on the narrow present of blood counts and chemo side effects. It has turned out to be a place of small celebrations, strident advocacy, and lots of horror stories.
From preschool to high school, most kids with Down syndrome and their parents have to fight tooth and nail to be included even in the most cursory of ways. There are lot of questions about the percentage of time in general education classrooms, pullout vs. push-in services, one-on-one aides, and curriculum modifications. There are heart-wrenching stories about kids coming home with bruises from being grabbed by adults, not being included in the yearbook, not being allowed to wear the same cheerleading uniforms as the "regular" kids, being segregated, excluded, disrespected, abused, and ignored. About IEP meetings where parents are told their children are too much trouble, not compliant enough, too unruly, not "high functioning" enough - to be part of their own communities. About kids who are being relegated to "self-contained" classrooms in pre-K and kindergarten with little hope of ever being part of a whole school community.
And then there are the triumphs. Pictures of kids going on field trips or to prom. Tales of multiplication tables memorized or spelling tests aced. But these are fewer in number and told to bolster the spirits of those who are repeatedly beaten down by the process, forced into mediation, due process hearings, legal battles, and often homeschooling or private school.
And in the midst of all this, I think of Hope. Of the meeting in the Community Play School office after her first day back, when all the teachers gathered and asked, "What does Hope need?" Not, "What are your requests?" Not "How must we accommodate her?" No. How can we meet the needs of this child, just like we meet the needs of all of the children here. The list was pretty short. Mostly about limiting exposure to any germs. And then she was in. Not accommodated, just in.
Inclusion is the natural state of being. I ran across a group recently that has an annual inclusion conference called "All Born (In)." That's it. Hope is in Community Play School. There is no fight about accommodations that they unwilling to provide, no discussions about how she will keep up or how to manage her behavior so she doesn't negatively affect the "regular" kids or be a drain on the staff. She's in.
(This week was also the comment period for a U.S. Department of Education and Department of Health and Human Services policy statement on inclusion of young children with disabilities in high-quality inclusive early childhood programs. And it's surprisingly good. Worth a read if you're interested.)
From preschool to high school, most kids with Down syndrome and their parents have to fight tooth and nail to be included even in the most cursory of ways. There are lot of questions about the percentage of time in general education classrooms, pullout vs. push-in services, one-on-one aides, and curriculum modifications. There are heart-wrenching stories about kids coming home with bruises from being grabbed by adults, not being included in the yearbook, not being allowed to wear the same cheerleading uniforms as the "regular" kids, being segregated, excluded, disrespected, abused, and ignored. About IEP meetings where parents are told their children are too much trouble, not compliant enough, too unruly, not "high functioning" enough - to be part of their own communities. About kids who are being relegated to "self-contained" classrooms in pre-K and kindergarten with little hope of ever being part of a whole school community.
And then there are the triumphs. Pictures of kids going on field trips or to prom. Tales of multiplication tables memorized or spelling tests aced. But these are fewer in number and told to bolster the spirits of those who are repeatedly beaten down by the process, forced into mediation, due process hearings, legal battles, and often homeschooling or private school.
And in the midst of all this, I think of Hope. Of the meeting in the Community Play School office after her first day back, when all the teachers gathered and asked, "What does Hope need?" Not, "What are your requests?" Not "How must we accommodate her?" No. How can we meet the needs of this child, just like we meet the needs of all of the children here. The list was pretty short. Mostly about limiting exposure to any germs. And then she was in. Not accommodated, just in.
Inclusion is the natural state of being. I ran across a group recently that has an annual inclusion conference called "All Born (In)." That's it. Hope is in Community Play School. There is no fight about accommodations that they unwilling to provide, no discussions about how she will keep up or how to manage her behavior so she doesn't negatively affect the "regular" kids or be a drain on the staff. She's in.
(This week was also the comment period for a U.S. Department of Education and Department of Health and Human Services policy statement on inclusion of young children with disabilities in high-quality inclusive early childhood programs. And it's surprisingly good. Worth a read if you're interested.)
Remember what Dr. Gordon told Hope in March? (Hope still reminds me on the way to school...) "Gordon say I go in!" Yup, in, that's where she was and where she will be when she moves up to the City Room next fall.
