As you read this, I want you to envision if this were your reality, how the world would feel, how you would act. Imagine even something so common as foam soap could make you gag and vomit if it touched your skin, and that most everything that touched your skin caused pain no matter how gently it landed or how soft it was. Imagine that even common sounds were so loud to you that it caused disorientation with intense pain or headaches. Imagine that everything you tried to do, everything you were asked to do was so hard you couldn’t do it without lots of practice for months or even years, that everything was so hard it was like the subject you hated most, the one you were failing, the one that made you feel really bad about yourself and your ability to do things, the one that the other kids made fun of your efforts at…and now, that’s nearly every waking moment of your day because everything is that hard for you. Imagine that people constantly talk about what you need to be better at around you as part of your therapy programs, so you can never forget that you aren’t doing as well as everybody around you. Imagine what it feels like to have people seeing far more of your struggles to do things than your successes.

How would you act? How would you feel?

Would you be calm? Would you be cooperative? Would you be happy?

Would you be scared of everything around you?

Would it become easier to refuse to try and do things than to keep looking like the person who couldn’t do anything as well as the people around you?

This is what each of you needs to understand about my son. This is what the world has felt like and to some degree still feels like to him.

And changes others might calmly tolerate, he’s only now getting to the point where he can roll with them. Today for example, we went to a park we haven’t been to in a couple of months because of the heat…and discovered they removed all of the old equipment and replaced it with something entirely different. His jaw was dropped a lot, but he did some playing on it and stayed calm. Even two years ago, this would have caused a melt down because it was different and he wasn’t warned and it wasn’t what he expected.

With a great deal of therapy, he can calmly wash his hands with the foam soap in the nurse’s bathroom at his school and still have a smile on his face while he’s doing it. Other things are still much, much harder for him. But he’s capable of them with the right supports.

Which is why his developmental pediatrician and his combined therapy team collaborated with the school in a discussion of our son’s needs. What was recommended and what was agreed to was a gradual integration into the school environment, with 20-30 minutes a day for the first couple of weeks and then slowly increasing both the time and the functional expectations for the environment. Because for Tony, for the fear to feel manageable enough for him to try, he needs exposure to start out slow. He needs expectations to start out slow. Once he’s less frightened, he’s more willing to show you his best effort, but he’s still going to refuse some things sometimes because it still feels easier for him to be the boy who says “no” than the boy who always struggles and can’t do things as well as other kiddos his age.

Because he does know, and he is aware.

After his first two weeks, he’s tolerating 40 minutes on campus. He is happiest in the self-contained class he’s assigned to because it’s attached to a sensory room, and he loves that because it has the same type of crash pad we have at home. He’s walking calmly to class, self-harming still remains a thing of the past, and he’s increasing his cooperation with instructions at school. We have things we are needing to practice (like walking to his gen ed homeroom) in hab therapy after school to help support what he needs to be doing in school. Some days he sits most of the time we are there, others he struggles to do that. Some days he can trace a few letters and label some characters and do some sight word memory games, others he just wants to look through a book. He’s working on it, we’re working on it.

As his mother, I am super thankful that his local public school team was willing to give this a shot and has been doing so much to support our son and our family in these efforts. But it’s going to be slow, the journey to reaching a full school day worth of attendance. And it needs to be slow, or he’ll reject this environment and these activities with everything that is in him.

And maybe if the world felt that way to you also, you’d need slow and steady too.