Among the many things I wished for when Max was little: a daycare that specialized in kids with special needs. We had a regular sitter, but when she was on vacation or called in sick, leaving Max at a regular daycare was stressful. Sometimes, my husband and I ended up taking off days from work.
I was so thrilled to read about A Place For Grace in Saginaw, Michigan, a daycare center for kids with special needs that opens September 2. Its founder: a mother of a child with special needs. As Jenny Dumont recalls of her struggles finding daycare for her daughter Emma Grace, now 9, who has intellectual disability, “She was having meltdowns four times in one week and I got called in to pick her up and when I got in the caregiver was doing the best she knew how. I got really frustrated and thought, Why isn’t there a place for children like Emma?”
Jenny Dumont and daughter Emma Grace
A Place For Grace has teachers trained in special education, along with a sensory room and toys for kids with special needs. It will ofter preschool for children ages 3, 4 and 5 (who missed the school cut-off) and aftercare for kids ages 5 to 16. The goal is to offer full-day childcare for school breaks and special days by Summer 2015, including therapies in accordance with children’s IEPs.
If you Google “special needs daycare center” in your area or state, some might crop up—key word being “might.” This country is sadly lacking in daycare options for children with special needs. It’s astounding, though not surprising, that this one was started by a parent of a kid with special needs. Parents like us often have more than our hands full and yet, we best know just how needed services like this are.
Back to school is always a hectic time of year (understatement alert). But when you have a kid with special needs it can be even more of a challenge, especially if you have a child who doesn’t like changes in routine. I’ve found that getting Max a new backpack or some other new school item early in August helps; it gets him psyched, and it comforts him to know he’s prepared. I asked Facebook parents of kids with special needs what makes the return to school go more smoothly for their kids and them. Their strategies:
• Get back into a routine. ”I start the routine two weeks prior, bedtime and morning wake-up. I let him pick out his new lunch box and pack up his school supplies and pick his first day of school outfit. I drive him to school to re-introduce it for familiarity.”—Amy S.
• Keep it visual. ”We do a monthly schedule color-coordinated for each of the four kids, and now a color for the dog! Kids and I like to see what’s ahead and what we get to look forward to.”—Nancy B.
• Two words: “Online shopping!”—Maria K.
• Build excitement. “A giant wall calendar shouts the term ‘starting day’ and conversation touches on the new teachers and responsibilities.”—Dave W.
• Get some teacher scoop. “It helps to have a hint of what the coming year will bring. Some inkling of who this teacher is, into whose hands I’m about to place my child’s well-being and education…. I’m in a state of horror as I know none of that yet!”—Barbara H.
• Practice homework to build confidence. “We do some ‘school’ work from workbooks every day to reinforce what he already knows!”—Amy S.
• Know that it will get better. ”My son actually does a lot better during the school year. He gets bored at home, and begins cycling through his preferred activities at a much faster rate. But adjusting to change is never easy for him. I expect to see increased frustration and aggression during the first few weeks of school. Knowing that situation will improve as he becomes more comfortable in school makes it easier to deal with a change in behavior.”–Regan B.
Max goes to a wonderful school for kids with special needs. Yet at times, I have second thoughts about whether I’m doing him wrong by not sending him to an inclusive program in a public school. When I’d checked in with our district coordinator a couple of years ago, a woman whose opinion I value, she was negative about the possibilities. For one, the aides in the system were not up to par, she told me; our district had recently fired the longtime, experienced aides and brought in hourly-rate staffers of dubious quality, Also, Max would have to be pulled out a lot from class for the various therapies he needed. She thought it would be disruptive. We both agreed that his current school is the best place for him.
I worry about Max growing up in the hothouse of special needs, in which he mainly interacts with other kids who have disabilities. Someday, when he is out of school, navigating the real world may come as a shock to him. I also think it would be beneficial to him to be around typically-functioning kids. He is a really social child who loves being around other people. Is he missing out?
NPR ran a powerful story on inclusion this weekend, Learning With Disabilities: One Effort To Shake Up The Classroom. A federal law, the Individuals with Disabilities Education Act (IDEA), declared that students with disabilities had the right to the “least restrictive environment” in educational settings. Still, NPR says about 17 percent of students with any disability spend all or more of their days separated from their peers, though that figure may be a lot higher: According to a report several years ago by TASH–an international advocacy association for people with disabilities—at least 57 percent of students with intellectual disability received all of their instruction in a special education classroom or separate school.
The NPR article took a look at San Francisco’s Presidio Middle School, where about 10 percent of 1200 students have special needs ranging from a mild learning disability to severe physical, emotional and mental ones. The school has a handful of mixed classes. There is a also a segregated classroom, though Presidio includes those kids in gym class, art and other electives.
Documentary filmmaker Dan Habib, father of a 14-year-old boy with cerebral palsy and an advocate for inclusion, notes that Samuel’s inclusion in school classrooms has carried over to relationships and peer support outside the school. “He’s also had a tremendous impact on his peers,” Habib noted. “His peers now see disability as part of the natural diversity of our world.” He points out that changing special education systems can be a lot of work, but it’s “the only way to go forward.” He makes a powerful case for inclusion in his TEDx talk Disabling Segregation. It’s very much worth watching, and will give you yet more pause if your child is in a special education setting, as it has for me. I will, once again, be bringing up the possibility of inclusion with our district coordinator.
Ultimately, you have to do what you and the experts in your life think is what’s best for your child…but sometimes, it is so hard to know.
Here’s news that may influence parents’ decision on when to enroll their tots in kindergarten: The youngest kindergarteners are about five times more likely than the oldest students to be held back, says a new study from The University of Missouri. And retention could have an impact on a child. Says study author Francis Huang, Ph.D., assistant professor in the Missouri University College of Education,”Requiring children to repeat a grade…can affect children’s self-esteem and their ability to adjust in the future.”
The study also found that children who were shorter were more likely to be held back a year than taller peers with the same classroom difficulties. Kids with higher attentiveness, task persistence and eagerness to learn were less likely to repeat a grade.
While many parents opt to enroll their kids in kindergarten as soon as they can to avoid paying for another year of daycare expenses, if your tot is on the younger side then you may have to be more proactive about making sure his or her’s needs are met in the classroom. “Since older kindergarteners can have as much as 20 percent more life experience than their younger classmates, teachers need to meet students where they are developmentally and adjust instructions based on a student’s ability,” says Huang. “Studies have shown that only a small number of teachers modify classroom instruction to deal with a diverse set of students.”
Max is in a school for kids with special needs, and always has been, but I often wonder about whether we should consider inclusion for him.
It’s a toughie: We think he’s getting a great education, and the teachers and therapists are outstanding. If he were in a so-called typical class, he’d get pulled out a lot for therapies. I’ve heard, straight from a school source, that the quality of aides in our district’s public schools isn’t up there.
I long for him to be around so-called typical kids, both because I think they could have a positive impact on learning and for social reasons, too. And then, there’s this truth: Growing up in a special needs hothouse, as wonderful as it is, isn’t preparing him for the real world.
Last night, I watched the documentary Certain Proof: A Question of Worth; it’s about the challenges children with severe cerebral palsy face in the public education system. It really got me thinking about inclusion, as did this infographic on the topic.
Ah, special needs parenting decisions, decisions….