My sweet boy turns five next week. FIVE! His IEP meeting will roll around sometime after that, which means it’s time to start making the big decisions.
It’s really not as if we’re just starting, though. In some ways, we’ve been preparing for this since he was about two. But now it’s time to make the call.
In our state, a child starts kindergarten when he turns five, as long as his birthday falls before September 1st. If it’s after Sept 1, he starts kindergarten at six.
Sam turns five on February 4th, long before the cutoff. And so, in the eyes of the law, he will be eligible for kindergarten.
But in some ways he’ll be a very young five developmentally. In some ways, he’s right on track. He already knows all his letters, his numbers to ten, most of his colors, and most of his shapes. That’s pretty much what you need to know to go to kindergarten, and he’s there—has been there for some time, actually. He also loves routine and is great at following directions, so I have no doubt that he’ll excel in the parts of kindergarten that deal with routine: circle time, story time, etc.
But his speech is closer to a two-year-old level. His self-care skills are, in some cases, closer to a two-year-old (and then in other cases right on target). His fine-motor skills are extremely delayed—there is no way he’s ready to start working on handwriting yet. And he’s physically tiny compared to a five-year-old (though he’s been going through a massive growth spurt, so the gap is finally starting to close!).
So what does one do with this five-year-old who in some ways is more like a two- or three-year-old but in other ways is very much like any five-year-old?
There are a few options:
- An extra year of preschool
- Special education
- General education
Let’s start with the first one: an extra year of preschool. In many ways, this would be my ideal. I think many kids would actually do better in kindergarten if they started at age six, regardless of whether they have a developmental delay. Boys in particular are squirrelly creatures at five, and somehow they seem to mature quite a bit by age six. Although Sam isn’t particularly squirrelly, I do think another year to mature would be fabulous. I think he’d do awesome if he started kindergarten at six.
However, there is one huge problem with this scenario: We can’t afford it. Preschool runs over a thousand dollars a month here, and unfortunately we do not have an extra $12,000+ to keep Sam in preschool another year. And the district is not legally obligated to pay for it once he is eligible for kindergarten, because in the eyes of the law there’s no reason why he can’t start kindergarten—they have general ed and special ed kindergartens, and at age five he is eligible for either. The only reason why they covered preschool was because the district doesn’t even offer general ed preschool, so they are legally obligated to cover private preschool for kids under IDEA (which Sam is). But once he’s eligible for kindergarten, then that’s where he goes unless we fund preschool on our dime. If we were wealthy, we’d do that. Unfortunately, we are not wealthy.
So then option #2: special education. This is not the route we’re pursuing, and I’ve actually had a few people message me or ask me outright why not. And I’m sure for every person who has asked me (which is totally fine—I never mind talking about this!!), there are probably ten people who are wondering and don’t ask.
The reason we’re not pursing special ed is that a huge body of research from the past couple of decades shows that students with intellectual disabilities (ID; like Sam’s) do best when they are educated in an inclusive or mainstream classroom. As they reach teenage years and adulthood, students with ID generally have measurably stronger language reading, writing, and math skills.
I don’t want to bore you with all the numbers, so let me just link to a couple of resources that go into more detail on this:
And stepping away from measurable performance and all that good stuff, moving to a more personal note… I have attended a couple of presentations and read some books on inclusion, given by parents further down this road than we are. They all say the same basic thing, although one summed it up in a way I just love: “Having access to an inclusive education means they can join the conversation. We want them to be able to join the conversation.”
YES! That’s exactly it. Let me explain what she meant, since you all didn’t get to enjoy her full presentation as I did. The woman who said that is named Laura, and as I said, she echoes what other parents of adult children with ID have said. In special education, skills are very focused and targeted. They teach kids with special needs things like how to toilet, how to eat politely with utensils, and basic academic skills. What they don’t tend to do is give them access to a broader base of knowledge. Where typically developing teenagers are studying Shakespeare, kids in special ed are not. And then out in the real world, when someone brings up a topic like Shakespeare, they cannot even enter the conversation because they’ve never been exposed to it. They are left out in the cold, rather than being able to participate in the conversation.
Laura used Shakespeare as an example, but this same scenario applies to any number of topics. And Laura (and other parents of adults with ID I’ve talked to) freely admitted that she knew her son wouldn’t be able to keep up with the rest of his class in Shakespeare—but she also knew he’d absorb some of it, and it would be enough to allow him to join the conversation.
That’s the thing. I don’t need special ed to teach Sam how to toilet and how to use utensils. He already uses utensils, and I am his parent—I will teach him to toilet. What I want the school to do is expose him to the same curriculum that every student gets. We will modify it to meet his abilities at any given time, of course—we want him challenged, as we would want any child, but we recognize that because Down syndrome generally goes hand in hand with a slower processing speed, we will need to make modifications for him to succeed.
But that’s okay! That’s what IEPs are for. That’s how we can say, “Twenty spelling words a week is more than Sam can succeed at, but he can succeed at ten. So his weekly list will be the same as the other students get, but he will only be tested on ten from that list.”
You see? He’ll be given the same exposure, but not held to the same accountability. He’ll be held to an accountability that is appropriate for him—it will be carefully determined by us and by his IEP team. And when Sam is old enough to have an opinion on the matter, it will also be determined by him. IEP stands for individualized education program, and that’s exactly what it will be.
So, when we have his IEP meeting in the next couple of months, we will be requesting placement in a general education classroom for kindergarten, with appropriate supports. That is what is covered under IDEA law, and that is what he will get.
Let me tackle a couple of frequently asked questions, because some people reading this probably have them! I know I probably would too—and in fact, they are all things we have mulled over at length.
Do you think he’s ready for kindergarten? He seems so young!
In some ways, I think he’s ready. Academically, yes. Fine-motor and communication-wise? Well…I think he’d benefit from another year in preschool on those. But as I said, it’s not an option for us. So we’ll start him in kindergarten with plans for him to repeat it unless he makes a huge developmental jump in the next year. The district is reportedly fairly open to kids repeating kindergarten, so I don’t think this will be a hard sell.
Kids start learning to write in kindergarten! How is he going to do that with a fine-motor delay?
I’m going to ask for an assistive device where he can type his words, until his fine-motor skills catch up. Because I’m reasonably certain he’s ready to learn to start spelling simple words (like most kids his age), and I don’t want him held back from that simply because he doesn’t have the fine-motor skills to control a pencil yet. We will also be requesting OT services to help work on prewriting and writing skills. Our insurance company doesn’t cover OT for that purpose, so we haven’t been able to do it yet. But the school district will offer it—they did for Theo, and he made great progress.
He can’t talk much. How is he going to communicate?
He gets his point across well even without many words. He has an assistive talking device he can bring with him. And his teachers in preschool have never had a problem communicating with him despite his lack of spoken language, so this is the least of my worries.
Won’t he need extra attention from the teacher? How’s he going to get that in a big class? Wouldn’t a smaller special ed class be better?
Yes, he would need extra attention from the teacher—and that’s not fair to the teacher, who has twenty-five other small children to work with. So we’ll be requesting a 1:1 aide (also called a paraprofessional) to be in class with him. Districts don’t really like to provide this because it’s expensive, but under IDEA he is guaranteed “appropriate supports,” and in this case no one would argue that a 1:1 aide is an appropriate support for a functionally nonverbal kid who will require toileting assistance. So the teacher will give her directions as normal, and the aide will provide Sam with any extra assistance he needs to complete his task. A good aide will step back as much as possible and let Sam do things himself, but will be there to step in when he needs assistance. Hopefully we will find such an aide. The district assigns them, so it’s kind of luck of the draw, but we can always request a new one if the one assigned doesn’t work well with Sam for any reason.
Aren’t you afraid the other kids won’t play with him?
Well, sort of…and then sort of not. I’m afraid of that only in the way that I am with any child—I was a very shy child without many friends, so I know what it feels like to be an outsider. I worry about that for both of my kids. But I don’t worry about it because Sam has Down syndrome, because what I’ve seen so far is that young children are very accepting and don’t bat an eye at his differences. They really do step up to the plate and look out for him, which is quite sweet.
Are you scared?
Hell yes. But I think I would be scared with any option. The rate of abuse of kids in special ed is pretty awful, so if we went that route, I’d have that fear. (Here’s a link to a lot of research on it, but I don’t recommend reading it unless you have a very strong constitution. It’s pretty horrifying.) At least in mainstream, we won’t face nearly as much risk of that—he’ll have twenty-five other verbal kids looking out for him in class. We’ll have fears with mainstream; they’ll just be different fears. I’m always going to have some fears about him. I think that’s just part of being a mother.
So he’ll be in an inclusion program?
Not exactly. He’ll be in a mainstream program. Inclusion and mainstream are not the same thing. Inclusion implies that the classroom is designed for students of all abilities, and that the curriculum is designed for differing abilities. A true inclusion program would be magnificent, but we don’t have them in our district. In a mainstream program, Sam will be in a general education classroom, quite possibly the only student with a disability. The curriculum is targeted to the typical students, and Sam’s will simply be individualized as determined by his IEP. It’s a subtle but important difference. We’d love inclusion, but they just don’t offer it. So we’ll make the mainstream option as inclusive as possible—gotta work with what we’ve got!
Is the district going to agree to all of this?
Hopefully. If not, the law is on our side. But I’m hopeful that we can just settle it during the IEP meeting.
What if it doesn’t work out? What if it’s too much for Sam?
I have a hard time believing this would be the case, given how I’ve seen Sam rise to the challenge over and over again. But if the mainstream placement were indeed too much for him, we would simply call an emergency IEP meeting and redo his placement.
But I refuse to start out basing his educational future on what I think he can’t do. I’d rather let him show me what he can do. And I’m pretty sure he’s going to rock it!