Being Hewmin

Matthew and Benjamin

They are identical twins, and they live with autism. This month they turn twenty-two.

That number matters more than a birthday usually does. Twenty-two is when school district services end. They are being recognized at school this week — a graduation of a kind — and on the other side of it is a system neither of them has ever used.

Their father

John is their father. For twenty-two years he has been in the meetings: the evaluations, the individualized education plans, the appointments, the appeals, the paperwork that arrives with a deadline and no explanation.

All of it doubled. Two boys, the same age, the same diagnosis, needing the same thing at the same moment. There has never been a year where one of them was easy while the other was hard.

Their sister

Alexa is fifteen months younger than her brothers, and she has been alongside them her whole life — not someone who arrived to help, but the sibling who was always there.

Siblings are the least written-about people in autism. They grow up fluent in a world nobody taught them, and they are usually the ones everyone assumes are fine. If Alexa ever wants to write about that here, the space is hers.

What this site is for

John is building hewmin.org into a resource for families raising children with autism and developmental disabilities — written from inside it rather than about it.

Not a diagnosis explainer; there are plenty of those. What is harder to find is the practical knowledge a parent only gets by doing it: how to prepare for an IEP meeting, what to do when an evaluation comes back wrong, how to keep going when the services change and it is unclear what happens next.

The cliff at twenty-two

Families call it the cliff. The supports a child has had since preschool stop on a birthday, and the adult system that replaces them has its own agencies, its own eligibility, and its own waiting lists.

John is standing at that edge right now, with two sons. Whatever he learns getting through it will go here.

What a challenging puzzle to care for mercurial wonders such as these young men. The transition of a neurologically atypical child to an adult calls for looking back to all the learnings and guidance gained from those who have served in the educational system. It calls for the recognition of the vast supports the Massachusetts Department of Elementary and Secondary Education (DESE) has provided through the public schools and services.

Only gratitude to the great teams and individuals that have educated, nurtured, and served these youths. The roots of those dedicated teachers, administrators, navigators, therapists, and lovely humanitarians sprouted the development of their adult lives. Reflections on the great contribution of many star performers in the Marlboro Public Schools, The Charles River Center, Thrive, and Early Intervention offer confidence and hope their lives will be fruitful.