My Story: Having a Special Needs Child Is a Great Adventure

Having a special needs child is a great adventure, and one I would not have missed. You make the adjustment as a parent out of love, and you realize that now your life is just different.

And then there is school. There is no set of directions, no road map, nothing except you, and if you’re lucky, some wonderful teachers that chose special education. There were not a lot of them when my son was in kindergarten and first grade. Mainstreaming was the norm, and regular teachers were expected to adjust curriculum with little or no help.

Advocating for my son Erik was a world I was thrust into and ill-prepared for, but the reality is, there is no one better equipped to advocate for your child than you, the parent.  Words like inclusion, mainstreaming and special versus typical kids became part of a language that I had to learn. All went well for a time, and then middle school happened. Social inclusion and vocational training became more important than academics.

More: Special Education in the U.S. Has a Long Way to Go—Here’s What Schools Can Do About It

Erik has mild physical and cognitive disabilities, and in Massachusetts, students must pass the MCAS competencies in order to receive a high school diploma. It was becoming apparent that Erik would most likely not be able to pass these tests.

I didn’t realize that no matter how much teachers wanted to help, they were limited by budgets, school policy, town, district, and state bureaucracies.

I didn’t realize that no matter how much teachers wanted to help, they were limited by budgets, school policy, town, district, and state bureaucracies. Erik was unhappy, had few friends, and his differences were now fodder for teasing, which was not helped by having cafeteria work as part of his vocational training.

We advocated for an out of district school placement for him, and only after he was physically assaulted on school grounds, did we get approval.

Erik’s life changed when he went to the LABBB Collaborative at Lexington High School. He had a community of pretty high functioning special needs kids that were very similar to him and made friends that he still has today.

He went to Disneyland with his class, went on frequent field trips, learned how to use a gym, swam, ice skated, was in a men’s health group, participated in Special Olympics and won medals. He went to dances, had a prom, learned how to take public transportation, worked in an office, a food bank, a hospital, an organic grocery store, and several other placements. He became a happy person and started to advocate for himself.

So much of his success is due to the incredible staff at LABBB, especially his tireless teacher, the wonderful Mr. Tom Brown. They had a graduation the year they turned 22 and aged out of the school system, complete with caps and gowns. They received certificates instead of diplomas, but it didn’t matter, they were thrilled!

Today Erik lives independently with supports, works at a grocery store, takes karate lessons (has medaled in board breaking), and has a very active social life with friends with and without disabilities. He continues to advocate for himself.

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Lisa Hart works as an executive for an international nonprofit in the publishing industry. She is a mom to four, a grandmother to three, and continues to advocate for children living with special needs.