I spent most of the day at school with my youngest daughter, who has Down syndrome. I spoke to her general education classmates about Dow syndrome, helped with an activity for another class, had lunch with her, and then because she asked me to, I stayed for music. 

I was overwhelmed and exhausted. No wonder she prefers “home days.”

We got to come home a little early, and as we walked to the car she asked if I could start going to school with her every day from now on.

There was a part of me that wished I could say yes. 

I worry about her. 

Kids with disabilities are especially vulnerable, so I worry.

1. I worry about school.

It’s not so much about teachers following her IEP (although I do worry about that). I worry about what happens during the school day that my daughter cannot tell me about due to delayed speech. I worry she won’t have someone to eat lunch with. I worry she will get pushed around in the crowded hallways. I worry she is a guest int he classroom rather than a valued member of her community.

 2. I worry she won’t be included.

I worry about other kids not including her. The older kids get, the wider the developmental gap between my daughter and her peers. I also don’t see many schools successfully bridging that gap. It’s the lack of birthday party invitations, or someone wanting to hang out with her outside of school. Or when a dance studio refuses to teach her because she has Down syndrome.

3. I worry she will feel she doesn’t belong.

My daughter is aware she’s not welcomed in all spaces. She already feels intimidated in certain situations and aware some people don’t know how to respond to her. She was the first to notice her picture was left out of the yearbook a couple of years ago — then noticed so were her other friends with disabilities. I don’t want her to ever think there is no place for her. I want her to know she belongs and is wanted.

4. I worry about bullies — the student and the teacher kind. 

She is vulnerable, and easy “target” to the bullies. And the bullies are not only peers. Already due to her speech difficulties, in third grade, I had to defend her as a teacher accused her of saying words she didn’t say and was therefore treating her like a “bad kid.” I put a stop to that but what happens when I don’t know about it?

5. I worry about someone breaking her heart. 

My daughter loves big and she is fiercely loyal. I wish she had a friend who felt the same way about her. 

6. I worry about her future. 

The future is unknown to all kids, but when you parent a child with a disability, that unknown becomes very scary. It’s jobs, relationships, supports — what will that look like for her? When she grows up, will she have a hard time finding a job because of ignorant disability attitudes and employers not willing to give her a chance? Will she find a meaningful relationship? She wants to have kids, will that be in her future?

7. I worry about people taking advantage of her. 

I recently heard a couple of stories about individuals with disabilities being scammed. Listen, this is a real worry. My kid is so loving and caring she may not question someone’s request. 

8. I worry she will be abused.

We know individuals with disabilities have a higher incidence of sexual abuse (and emotional and physical). It is horrifying to think this could happen to my child.

9. I worry about what happens when I die. 

What happens when I am no longer around? Will someone care for her the same way I do? I think this is perhaps one of the biggest worries we face as parents. 

We take it day by day. That’s all we can do.

As we walked outside the school I told one of the secretaries, “If the school wants to hire me so I can be my daughter’s aide, I am all for it.” I was joking — unless I wasn’t. I know independence is so important, but the truth is, I worry.

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