Early Intervention in Autism | Meet Neda and Mason: You know your child best

Transcript

So my son’s name is Mason. He received a diagnosis of autism, among other things, just under a year ago. He is in Early Intervention. The early intervention, he’s been in since he was about six months old. So he has a different therapist, pretty much, for every day of the week. So we have a huge team of physical therapists, occupational therapists, speech therapists, special instructors, and nutritionists all through the Early Intervention program that he’s been in. As far as the school and the aging out of Early Intervention and into the school system, that is something we’re in the process of doing. 

We haven’t quite met for our IEP meeting or anything like that. And I know, with the hurricane, it’s also gonna be pushed back from what I understand. But I can say that the therapists that come in and help my son week after week and even the FSC, the first one that I got over two years ago. That is yet to come. He did his evaluation with Lord, I don’t even know how they say it. It’s SL, South Louisiana Human Authority, something like that.

 

[Interviewer] Human Services Authority. I think, right? Yeah.

 

So he, for the waiver and everything, we did that, he qualified.

 

[Interviewer] Oh, great. Oh, great.

 

And I know that these kind of all go together. But we have not had the actual sit down with the school system. I was told that they are backlogged due to COVID and then now the hurricane. There’s actually some individuals who have aged out of early steps who have yet to have the meeting themselves and Mason turns three in December, so.

 

The way that it was initiated was at a routine well visit for my son. He started early intervention extremely early. I was lucky because I was a nurse in the neonatal, the nursery, labor and delivery, everything like that, so I kind of knew the scope of what he should and should not be doing. So when the certain reflexes weren’t there or milestones weren’t being met, I knew right away. And so I approached his pediatrician regarding it, which, I can say, a lot of times, it’s kind of, “Oh, well, you know, babies can do that.” And it is true. Babies can do all sorts of different things. So it took a lot of just sticking with it and saying, “There’s something wrong with my son and I need to know what it is. We need to find out.” And from there, we were referred to Children’s. And after meeting with the neurologist the first time, we were referred to Early Steps. And Mason, who was five months at the time, scored way below the fifth percentile in what he should have been able to do. As a nurse, I know Early Intervention is everything. It’s key. Our brain, it’s still forming until three years of age. And the hardest part is okay, am I looking at it and thinking, “Am I overreacting?” But you feel it in your gut and you have to be your child’s voice because they don’t have one and continue to push, you know?

 

[Interviewer] Yeah.

 

First and foremost, for all of the other parents out there, I would say if you have a gut feeling that something is not right, do not ignore it. 

 

Whether it’s mother’s intuition or what have you, always tell a provider what it is that you’re afraid of. And if they don’t listen or they minimize it, tell another one or tell them again and continue to do that. Because like I said, you can kind of be made to feel like you’re making something out of nothing, but you know your child best. Better than anyone else. And so I would say, be their voice. And as far as support goes, I’m not someone who’s really blessed with a support system, so it was difficult. And I can tell you that, at first, no one tells you what’s going on, they just run a bunch of tests. And your mind can go to what’s the worst case scenario. And having a support system would obviously, that’s where they would come into play. 

 

But even if you expect, like my son also has mild cerebral palsy and we kind of knew that from day one that he had that, we worked with that. But even two years later, getting that diagnosis, you still mourn it even though you’re expecting it. And I think that that’s normal. And I think the team of therapists that come into my house every week, those are the people who matter the most. And they’re kind, they care so much about Mason, they are just as big of a cheerleader as I am, if not more. They’ve always been helpful. 

 

When you go to a doctor’s appointment, it’s a snapshot in time. So your child can be having a great day and look completely normal and make you look like you don’t know your child at all. Or they could have a very bad day and they think that’s how your child is and that’s not really correct either. So a lot of times, I would have, for just appointments that were coming up, prior to having a diagnosis, I would have the therapists just kind of write a little summary of what’s going on since our last visit. And they always did. And they’ve always been helpful. 

 

So I would say even if you don’t have family, you’re gonna make it. And those therapists, they become your family. They really do. And your support. I haven’t had the meeting yet, but I have talked to other parents and support groups and everything like that. And from what I understand, regarding our special education, there is such a lack of service or qualified individuals to help our children. 

 

And with Mason transitioning into the school system, one thing that I’m very worried about is is he gonna have the help that he’ll need while he’s away at school? And that’s a long time for him to try and stay on task. And if he’s high functioning, do they think it’s a behavioral problem? And then is he placed in that category? And just with him having to be different, if he’s still in diapers, or my main thing is services are limited through the school system, so my plan is to do outpatient. Now, I know that’s not always everyone else’s plan. We still will go through the school system for certain things, but I think physical therapy is like once a month. And with him having cerebral palsy, he needs more than that. 

 

But my worry is that they try and mainstream and it’s a double-edged sword and I think it’s something that a lot of parents struggle with. You do not want your child to not be around neurotypical kids because they do imitate what they see and you don’t want them to regress. However, you don’t want them to feel less than because then, down the road, we’re looking at, okay, mental health issues, substance abuse, things like that because they never quite measured up. And it’s a very big worry. I know my son better than anyone. I spend every waking hour with him. And to have him go into a classroom setting, one, where I know that a lot of the teachers there, they lack the qualifications to take that on, and two, they also have such a large load with the children in general that you can’t have that quality one-on-one, helping them regulate emotions, stay on task, or anything like that. And that is something that I worry about because I don’t want to not have him in school and him not have that social experience, but at the same time, I don’t want him to go to school and not be able to do what everyone else is doing and feel different or like he doesn’t measure up, if that makes sense. I do. It is something that I’ve kind of thought about. 

 

Since probably around the age of two, I knew it was coming, also, speaking with other moms in different groups. So essentially, we’re gonna go through the school system and have what they offer. I anticipate that it won’t be enough for Mason, and therefore, I’ve already spoke with all of his therapists who are in Early Steps, they also have their clinics. And consistency is key. So also, Mason’s spent years with these people. So doing outpatient with them is the route we plan on going. 

 

As far as school goes, maybe some type of hybrid like e-learning so that we’re kind of doing both. I feel like school and then all of these therapies on top of it is a lot for a kid. He’s already been robbed of his infancy. I do not want him to not have a childhood as well. So we plan to do outpatient. We will obviously take anything that the school system offers. If I don’t feel like it’s enough, then 100% I would let them know, “I don’t agree that it’s enough,” and either out-of-pocket or whatever I have to do, I’m going to make sure that my son’s getting the proper services that he needs. 

 

So I think that something, just in general, to make the transition easier, there are different, like Bayou Land Family Helping Families, they have advocates that will go with you to these meetings if you feel like you need that. But I definitely feel that the transition would probably be a lot more cohesive if we weren’t changing FSC’s constantly. There’s such a large turnover rate that I don’t feel like you can really become that familiar with the child’s case you’re taking on. Also, from what I understand, you walk in and there’s a lot of people there and you’re sitting there, and for some people, they’re just finding out that “Hey, my child might be a little bit different,” and there’s more than just one person sitting there and it can be intimidating. 

 

So I think that maybe less intimidation and more personalization, trying to connect with the parent and everything like that and explain, “This is what we think and this isn’t. We don’t think he needs this. We do think he needs that.” Or even allowing the therapists that have been working with him for years who know him second best to me, basically, to come into those meetings and say, “I think he needs physical therapy for this reason. I am his physical therapist. This is where we were, this is what we’ve done, and this is where we’re at.” And kind of speaking their professional opinion as well. And not only that, but having the school system listen. And I know that it’s hard. It’s a lot of kids, not enough professionals, but it can’t be at the cost of our children. 

 

I feel like having someone who is better trained to take on non-neurotypical children instead of labeling it a behavioral issue or something like that. I think that would make the transition better, easier. Like I said, the consistency, having aides and everything like that. But that would be ideal. However, I know that we lack resources, manpower, and everything like that. But I do feel like our children entering the school system are being done an injustice. So knowing your options, whether it’s ABA or occupational therapy. But just understanding sensory issues and things like that. Like that’s, when you first get a diagnosis, don’t go to Google right away, but find out what’s going on so you can better understand your child so you can better advocate for your child.

The Families and Stories Campaign is a series of interviews that feature parents of children with disabilities. With topics ranging from transition to adulthood for youth with disabilities to child development milestones, parents, caregivers, and children share their individual joys, fears, and struggles with caring for and being a young person with disabilities. 

We know the journey can feel isolating; our Families and Stories Project amplifies the voices of families like yours and builds a community among us. We are here to help.