Parents Of Students With Special Needs Face Acute Challenges
LULU GARCIA-NAVARRO, HOST:
As we heard earlier in the program, with so many schools across the country closed, many parents are now teaching their kids at home. Parents with children who have special needs or learning difficulties are facing their own particular challenges. Before the pandemic, most school districts placed students with special needs on an individual education program, or IEP. IEPs are implemented by a team, which includes teachers and parents, to meet students' educational needs. But now, many parents are left to their own devices.
One such parent is Dilshad Ali. She's from Richmond, Va. She works full time from home, and she has three children. Her eldest, D, has autism.
Dilshad, welcome to the program.
DILSHAD ALI: Thank you for having me. Good morning.
GARCIA-NAVARRO: Good morning. So all three children, including D, are at home with you now. How are you all doing?
ALI: Well, I mean, it's been one week thus far, and I think everyone has risen to the occasion as best as they can. But we're looking at one week of many weeks to come, I'm sure. The - we've been told our school district will be shut down at least for four weeks. I anticipate it'll go longer than that. So we'll just have to see how the next couple weeks go.
GARCIA-NAVARRO: Well, how have you been trying to help D?
ALI: Not well enough. I just haven't been able to give him the time that he needs, and that's my main concern because he's not the kind of a guy who can handle, like, packets of learning or sit independently and do some work. He needs hands-on support, and that's written into his IEP. He's got, you know, aides written into his IEP. He has occupational therapy and speech therapy, vision therapy written into his IEP. And those are all, you know, conducted on a hands-on, one-to-one basis.
And so you're asking me to take the work of a team and handle it myself. And I know these are extraordinary times. I understand that. You know, I don't mean this as an insult towards the district or towards his school. But the question is how. How are you going to do that, you know, even - especially for someone who is also working at the same time?
GARCIA-NAVARRO: Yeah. How is D feeling? I mean, this is hard, obviously, for you, but how is he doing?
ALI: I can tell you from my observations, you know, he definitely is a bit unhinged right now. You know, like many people on the spectrum, he thrives on a routine, and his routine is kind of out the window right now. Like a blink of an eye, he lost an entire support team.
So his school shut down, and he loves going to school - you know, the whole routine of the van comes in the morning. And he gets on the van, and he gets to go to school. And the best I can do by him is to take him for a walk in the neighborhood. That's it. I can't go with him to whatever store we would go to to practice on shopping skills or pushing the cart around the store. We can't do any of that.
So I don't know. The loss of the routine and the team and the activities and the educational learning experiences is - it's just more detrimental because to regain those skills takes so much time. So it's called regression.
So in the beginning, the first message I got from the district was, we're going to monitor him. You know, we - we'll look at where he was when this all started, and then we'll look at where he is when he comes back. And we'll see, you know, how much he regressed. That was the first answer I got. And my answer back to that - are you freaking kidding me? Like, regression is not how we measure something like this. And then, you know, to their, you know, benefit, things did improve after that. But the first reaction was definitely not what I wanted.
GARCIA-NAVARRO: Other parents with kids who have learning differences might be hearing this. What would be your advice to them at this moment?
ALI: I think parent advocacy is more important now than ever. I mean, pushing for your child, continuing to be in touch, you know, having that communication piece in place with your team - I would not let up on that.
I understand at the end of the day, there's only so much they can do. They can't send aides to your house. They can't send teachers to your house because of the whole point of social distancing and shutting schools down. And we are, at the end of the day, left to what we can do with whatever packets of information and materials they send us. But at least push for that.
You know, that's what I did. I've received a packet of, you know, his test that he's working on, how to do them with him. And that's step one of a couple different things I've asked them for. And have, you know, some patience. I mean, most of the districts are trying to do what they can. But you know, the stories are different from one district to another. What one might be doing for your kid, another district may not be. So...
GARCIA-NAVARRO: That's Dilshad Ali. Thank you so much for speaking with us. And good luck.
ALI: Thank you for having me. Transcript provided by NPR, Copyright NPR.