Rising Heights

Know what’s weird? Day by day, nothing seems to change, but pretty soon…everything’s different.— Calvin from Calvin and Hobbes

Nobody warns you that the milestones stop looking familiar.

When your child is young, the markers are everywhere — first steps, first words, first day of kindergarten. Friends celebrate with you. Teachers send home notes. The world is set up to notice these moments and hold them up.

Then your child hits middle school. Then high school. And the milestones your son or daughter is hitting every single day — the real ones, the hard-won ones — often go uncelebrated. Not because they don't matter. Because most people aren't looking for them in the right places.

At Rising Heights, we believe the teen and young adult years are some of the most important in the life of a person with intellectual and developmental disabilities (IDD) — and in the life of their family. These are the years when identity starts to form, when preferences become clear, when the shape of a person's future starts to come into view.

This March, for National IDD Awareness Month, we want to say something directly to parents of teens with IDD: your child is achieving things right now that deserve to be seen, named, and celebrated. And we want to help you do that — while also helping you look ahead with a little more clarity and a little less fear.

There's an uncomfortable truth in the IDD community that most families learn too late: the window between ages 14 and 22 is one of the most consequential stretches of a person's life, and most families spend it in reactive mode rather than planning mode.

By age 14, an IEP (IPP in Canada, EHCP in the UK, ILP in Australia etc.) should begin including formal "transition goals" — plans for what education, work, housing, and daily living will look like after school services end. Most families don't know this. Many who do know it still don't know what it means in practice. It often gets buried in the paperwork as a checkbox, not a conversation.

By 18 - 22 years, legal guardianship decisions have to be made. SSI eligibility shifts. Medical decisions change hands. The support structures that felt permanent suddenly have expiration dates that nobody mentioned when you were celebrating the good news of your child's progress.

By 22, school services end entirely in the US — what families often call "the cliff." The supports your child has relied on, the familiar staff, the structure of the school day, the therapists, the routine — all of it stops at once. For many families, it's the hardest transition they've ever faced.

We're not sharing this to frighten you. We're sharing it because the families who navigate this transition best are the ones who started thinking about it early. And the best place to start is not with fear — it's with celebration.

The milestones your teen with IDD is hitting right now are not lesser versions of typical adolescent milestones. They are their own category — more specific, more hard-fought, and in many cases more meaningful. The challenge is learning to see them for what they are.

Here are some of the ones we think deserve your full attention this month and every month:

➔ Self-advocacy, even small. When your teenager tells a teacher what they need, asks for help without being prompted, or says "I don't like that" and holds their ground — that is a milestone. It is one of the most critical skills for adult independence. Notice it. Name it out loud to them.

➔ A preference that becomes a passion. Maybe it's a specific music artist they follow obsessively. A YouTube channel they watch every single day. A type of task or project they pursue with focus and joy. These aren't just hobbies. They're identity. They're also potential pathways to meaningful employment, community connection, and lasting joy. Write them down.

➔ A relationship they've built themselves. A friendship at school. A favorite staff person they seek out. A connection with a neighbor or grandparent they have chosen to nurture. The ability to form and maintain relationships is one of the clearest predictors of quality of life in adulthood. If your teen is doing this, even imperfectly, it matters enormously.

➔ Functional independence, even in one area. Making their own breakfast without being reminded. Navigating a familiar route to a familiar place. Completing a household task from start to finish without a prompt. Each of these is a building block for adult life. They often happen quietly, without announcement. Celebrate the ones that show up.

➔ Emotional regulation progress. If your teenager handled something hard this year — a transition, a disappointment, a big and overwhelming feeling — better than they did last year, that is real and significant growth. It often goes unnamed because it's invisible from the outside. Name it anyway. "I saw how you handled that. You've come a long way."

Celebrating your teen isn't just good for them emotionally — it's also one of the most practical things you can do to support their development. Recognition builds identity, and identity is what carries people forward into adulthood. Here's how to make your celebration count for both today and tomorrow.

➔ Keep a milestone journal. Not a formal document — just a note on your phone or a small notebook where you write down the wins, big and small, as they happen. This becomes invaluable later when you're filling out adult services applications, talking to new providers, or helping your child build a portfolio for employment. The details you capture now are the story they'll tell later.

➔ Let them know you see it — specifically. Tell your teenager, in detail, exactly what you noticed. Not just "I'm proud of you." Try: "I saw you tell the cashier what you wanted yourself today, without me jumping in. That was you doing something hard. I noticed." Specific recognition builds a specific sense of self.

➔ Connect the milestone to what comes next. When your teen does something that points toward adult capability, say it out loud: "The way you figured that out is exactly the kind of thinking you'll need when you're living more on your own." You are not just celebrating a moment — you are building a mental map of possibility.

➔ Involve your community. If you're part of a faith community, a neighborhood, or a network of families, let people celebrate with you. One of the loneliest parts of parenting a child with IDD can be the sense that your family's wins go unwitnessed by the people around you. Let people in. Let them see your child.

If your child is between the ages of 14 and 22, some part of you is probably already aware that something big is coming. The shift from school-based services to the adult IDD service world is real, and it is hard. We won't minimize that, because the families we talk to deserve honesty more than they need reassurance.

What we will tell you is this: the families who come through it best are the ones who started building — community, plans, relationships, a shared vision of what adult life could look like — before the deadline arrived. Not because they had everything figured out. But because they were moving toward something, and they weren't moving alone.

At Rising Heights, we're building a community designed specifically for adults with IDD and their families: affordable, inclusive co-housing right here in Northeast Ohio where people with and without disabilities live as neighbors, not as residents in a program. Housing, care, work, and joy, all designed to work together. It's the model that families across the country have been searching for — and we're committed to bringing it to Cleveland.

We're not finished building yet. But families who want to be part of what we're creating can join our interest list now — at any age, at any stage. The earlier you're connected to us, the more we can walk this road with you. And that connection starts with a conversation.

Your teenager with IDD is not a future version of themselves still being assembled. They are a full person, right now, today — hitting real milestones, building real skills, forming a real and specific identity that belongs entirely to them.

This March, for IDD Awareness Month, we invite you to do one simple thing: find one milestone your child has hit in the last year that didn't get the recognition it deserved — and celebrate it. Tell them what you saw. Write it down. Share it with someone who loves them.

The future is coming. Planning for it matters deeply. But so does the life your child is living today.

Want to stay connected as we build something new in Cleveland? Sign up for our newsletter at the bottom of this page, or reach out directly at askme@risingheights.org . We'd love to hear your family's story — and we'd be honored to be part of it.