#1: When Diagnosis Feels Like a Dead End

In this podcast, we explore the emotional journey of parents raising children with special needs. From the initial shock of diagnosis to the challenges of everyday life, our expert guests share their insights and experiences. We delve into the importance of self-care, managing expectations, and seeking support from professionals and the community. The episode also highlights the power of advocating for your child and celebrating their unique achievements. Join us as we navigate the joys and challenges of parenting a child with special needs, offering guidance, resources, and a message of hope.

Introduction

Madhavi: Welcome to our Main Introduction podcast where we explore the world of child development and the unique challenges and joys it brings to families of children with special needs. I’m Madhavi, mom to a 25-year-old young man, Varun, diagnosed with autism, and I’m joined by Isha Singh, a seasoned child psychologist with over 15 years of experience. Together, we delve into insights and guidance for families like ours, aiming to empower and support through understanding and insights.

No matter where you are in your journey, we are here to walk with you, sharing experiences, knowledge, and compassion in every episode.

Challenges After Diagnosis

Madhavi: So I’ll start. When mothers come to Ananya, getting their children assessed or they come for a consultation because they suspect something is happening to the child – the child is not speaking or whatever – and some of them already know, they kind of know that there may be a developmental issue or there is a neurological condition that the child might have because they would have done some research on Google and they’re coming for confirmation from us.

MadhaviSome others don’t know. They come because they’re concerned. They’re worried why the child is not speaking. And they come to us. So when we do assessments and we tell them that the child has autism or ADHD or any such condition, the first thing that crosses their mind is, “Why my child? Why does my child have this condition?” You know, so that’s a very difficult time for them because, for every mother from the time she becomes pregnant, it’s like she has these things going on in her head that my child will become this or I am going to do this with my child, which my parents did not do with them, or this is how I would like to bring up my child and maybe he’ll become this or maybe he’ll become things that I couldn’t become. I couldn’t become a doctor, so my child can become a doctor. I couldn’t become whoever. There’s so much happening because it’s nine months. It’s a long time, right? Then the child’s first year, everything is fine. And by the second year, they start seeing some issues in developmental conditions, and then they come to us.

MadhaviSo they’re playing all this in their head, and suddenly it’s a rude shock when we tell them that their child has this condition. It really hits them very hard. I know that you experienced the same. What has been your experience, Isha?

Isha: Completely, you’re quite right. I do feel that Google and research just make it worse because the information is overloaded. They find different information. 

MadhaviI went with the report to my pediatrician. She told me, “Don’t worry about labels. It’s a developmental delay. You start helping your child.”I’m like, “Okay, what’s the first thing I should do since he’s not going to school?” I asked her which school, recommend me some schools, and she recommended me a school. I put him in that school and the teacher started… The next level of judging happens at school. The teacher saying that he’s not sitting, he’s running out of the classroom.

MadhaviHe shouldn’t be here, he should go to a different type of school, a special school maybe. Things like that. And then it’s like, how do I make him sit inside the classroom? And Varun started showing interest in music, so wherever the music was played in the school, whichever class had a music teacher teaching music, he would run out of his classroom and go sit in that classroom.

MadhaviWhichever grade it was, for him, he wanted to listen to music. And yes, it caused a lot of anxiety, fear. I don’t know what is in store for him, how am I going to educate him. Because whatever education I had, I couldn’t use it for him because I didn’t understand how his mind was. And I was looking for a quick fix too in a way that, okay, then where should I go since India does not have enough resources.

MadhaviI need to immediately go abroad to some country which has a solution. There was internet luckily by then. Not this developed, but there was some information on the internet. I came to know that America had information. So I wanted to run away to America looking for opportunities there. Or UK, wherever.

MadhaviSo first is denial. I think we all go through that and after some time when it sinks in, it’s like, “How do I fix this?” Yeah. Okay. There looks like a problem. I don’t want to acknowledge it’s a big problem. I would like to see, okay, this may be solvable. Maybe in my case, this is not a big problem. Maybe in other people’s cases, it’s a big problem.

MadhaviThat kind of a thing. It is a more solvable problem. But I had sleepless nights thinking about it. I had a lot of anxiety. I couldn’t talk to anybody. Because nobody understood this. I couldn’t even tell everybody in my family that this is called autism, because if I couldn’t understand what autism was, what are the chances that my mother, father, or my in-laws would have understood that.

MadhaviSo suddenly, you become isolated. You don’t know what to do. And my husband was somebody who wouldn’t bother much about these labels. He would say, “It’s okay, what if he’s autistic?” But I couldn’t brush it off like that. It was like, “He’s autistic. What are we going to do with him?”

So that was the challenge that I was facing. And it was an extremely difficult time for me to understand in which direction I should head. I had two children. So Pranav? Things like that, yeah.

Educating Yourself and Managing Expectations

Madhavi: And further assessment, and know which type of autism or it’s not autism, how does it matter?

Not autism. Maybe you’re thinking it’s autism, but maybe it’s ADHD. For me, it’s the same whether it’s autism or ADHD. All that I understand is the child needs help. So give the child the help the child needs. And I think the second best thing parents should do is, whatever is the label – ADHD, autism, whatever is the label – what they need to do is educate themselves, start reading about it, go to websites that are authentic like Autism Speaks or National Autistic Society in the UK.

India too has a few websites. And order some books. Nowadays people are getting PDFs of good books for free so they can download some books or ask people around for books. I think educating themselves is a first step. Depending on any professional in the beginning is okay, but it’s going to be a long-term thing.

So the more educated they are, the more empowered they become so they can help their child. Being completely dependent only on professionals may not be the solution. Yes. And I also kind of ignored my health. Have you seen mothers doing that? Focus shifts from, yeah.

Isha: Yeah. And especially in the beginning years, till 8 years, 9 years.

Madhavi: Yeah, self-care becomes very important. I wish somebody told me at that time that you need to take care of yourself too. I completely forgot. I developed a lot of health-related issues and that also I ignored for a long time till they became unmanageable. And I had to go to the doctor.

Then only I used to go. And what about managing expectations? How realistic should we be? What kind of expectations should we have from therapy or any early intervention program the child goes to? That’s a…

Isha: I don’t even know what to expect because the doctor who diagnosed my child, the clinical psychologist who diagnosed, told me that he will never speak. You have to just teach him how to brush his teeth, how to take a bath, and how to dress himself, and maybe he might do a little bit of academics, maybe you can teach him reading and writing.

Apart from that, not much can be done, so it was almost like a dead end for me. So from there, I had to find… because that was not very encouraging. Yeah, yeah, yeah. So that’s totally discouraging for a young mother to go through. I was about 29 years old. So averages of mothers, even today is around 30.

Okay. So they have so many hopes and dreams and career aspirations and things like that. So this comes and puts an end to their career expectations and also the child’s kind of what to expect from the child. So I feel that I would like to advise, when I look back 25 years ago, I would like to tell young mothers that take every day as it comes, look for small wins, look for small achievements that you have achieved, you and your child have achieved in the day.

Then worry about what he is going to do five years from today? Is he going to get married? I’ve had mothers asking questions like this. Will he have a normal married life? And will he get a job? Will he go to IIT? Things like that. I tell mothers that I don’t know. I did not know about both my children, what they were going to do when they were three.

Even now, I don’t know what my son is going to do after one year. I don’t know if he is going to have a normal married life. So if I can’t tell about my other son who does not have any diagnosis of special needs, how will I be able to tell about the child who has a diagnosis of special needs?

And how do you define normal anyway? Everybody has to define their own normal, isn’t it? So I, in my experience, I have not even met a single normal person. Always we feel that, oh, this person is this way, that person is that way. Maybe if this person becomes that way, then he becomes normal. And everybody’s normal is different.

So we need to define our own normal, I feel, as parents. And I think that’s my expectation. So I think when I started doing that, if I do well today, my tomorrow is going to be well anyway. How can it be otherwise? I’m going to take one day at a time. That gave me a lot of peace of mind because if I do a good job today, tomorrow also, it’s going to be good.

So that’s how I used to deal with it.

Advocacy and Acceptance

Madhavi: Another common challenge that I see parents go through on a daily basis if they have a child with special needs is going to parties, going to birthday parties, going to parks, playgrounds. Our children are not going to behave like typically developing children. So a lot of other parents and grandparents who are there, they ask, “Why is the child behaving like that?”

Is there anything wrong? Is there a problem? And that bothers mothers a lot when their kids are picked on and they are observed. So I think we as mothers of children with special needs, we need to be very accepting and then we need to be their advocates. We need to talk about their condition, educate people in our community about that condition, because when children are growing up in that environment, if they’re growing up in an environment where there are people who don’t know about the condition, they’re not going to get the support that they need.

I think our job becomes advocacy. We need to do advocacy for the condition, for the child, because the child does not know how to talk about his or her condition. It becomes our job to talk about it, spread awareness, not feel ashamed of discussing that my child has autism. So what?

If you can help, it’ll be nice, but if you can’t, then don’t judge. That’s the kind of thing that I think we need to do rather than avoiding such gatherings, not going there, keeping the child inside the house, giving them a phone or a tab or a TV. That’s not going to solve the problem.

Taking them out, showing them, making people ask questions, because when we take them, people are going to ask. We don’t have to ask them, but they are going to ask. Being proud of who the child is, talking about the child’s condition, spreading awareness, educating, is all advocacy. They need to become advocates.

Otherwise, if they’re going to get upset, a lot of mothers come and cry that, “My neighbor said this to my child. My aunt said, or uncle said, or my mother-in-law said this,” or whatever, whoever said it. I think that’s the next step for us as parents, I feel, not to worry about what anybody thinks. Because it’s our child, we know what our child can do and become their advocates.

Do you have anything to add to this?

Isha: Completely, you’re quite right. They have to speak for the child, yes. But sometimes I do feel…

Madhavi: It does not mean that the child has autism. That’s why the child is doing that. We start looking for everything.

Isha: Child first. Yes. He’s a child. He’s a child. Yeah. Diagnosis later. Child first.

Madhavi: Exactly. Any diagnosis later. So let…

Isha: Mischief is going to be there. Yes. Excitement is going to be there. Yeah. They’re going to be naughty too. Completely. Yeah. They are three-year-olds at any given time, I mean, they are a three-year-old or a four-year-old, then autistic. Not just autism all the time.

Madhavi: Yeah. Yes. He’s a child, yes.

And maybe autism might add in a few areas, but not in every single area. Yeah. Because I do understand…

Help Your Child Thrive

Seeking Support

Isha: Another thing that helped me was talking to pediatricians. I did not really have access to psychologists or any other professionals or a psychiatrist. I used to go to my pediatrician and sit and talk to her for half an hour, one hour. I used to take the last appointment in her clinic and I used to go and spend time with her so that I can get my questions answered.

So that helped me, when my pediatrician said something, especially when she said, “Whatever you’re doing is right.” I used to feel a lot better that, oh, I’m on the right track. I’m not doing something that’s going to harm my child. So getting professional guidance once in a while also helps.

Especially now moms are bringing their children for therapy to places like Ananya. So they always have access to qualified people so they can always talk. I know mothers almost every day ask us for a quick five-minute meeting or a longer meeting if they have a lot of concerns. That helps them because sometimes all I have to do in those meetings is sit and listen to them.

They don’t even want me to say anything. At the end of the meeting, I realized, oh, I didn’t say anything. The mother just spoke and she was okay and then she got up and left. So somebody to listen to, somebody who doesn’t judge them, that itself is… Find somebody like that, makes them feel a lot more relaxed than always doubting whether I’m doing the right thing or not.

So run it by whoever you think is going to make you feel better. It could be your neighbor, it could be your husband, it could be your friend, it could be a professional, but find somebody like that who can listen to you. That helps a lot. Yeah, yeah.

Celebrating Your Child

Madhavi: And, of course, celebrate your child. It’s hard in the beginning, after the diagnosis, then you say, “What is there to celebrate?” But I think as time goes by, you start seeing that your child is more than the diagnosis. Diagnosis is only part of your child. Your child is a human being. Your child is a child. So he’ll do things, he or she.

I mean, I tend to say “he” a lot because I have two sons. So he does things that anybody would do, any child would do. And once in a while, you see those autism behaviors. But he’s a child first. And you’ll start appreciating him as a child. I think celebrating those things really helps mothers rather than always worrying about what is the next milestone the child needs to achieve rather than let me enjoy what he’s already doing.

Isha: Yeah. Yeah. Yeah. Yeah. I read about this thing called destination addiction, like people are always looking for the next step. I’m going to be happy when I get here. Oh, I get there and this, oh, I’m going to be happy only when I get to the next step. That means they’re never going to be happy. They’re always worried about where to get next.

Rather than about, let me enjoy where I have reached. Let me have a good time now, and then I’ll find the next step. I think mothers should… Oh, my child has now started making sounds, from non-verbal to no sounds, to making just sounds, babbling, that’s a big reason to celebrate. From sounds to maybe small words, and then from words to phrases.

I think every step is important. That needs to be celebrated rather than waiting for full sentences, full paragraphs, conversations, perspective-taking, all that will come, but now celebrate what your child has achieved. I think that really helped me even today, when the day doesn’t go well, I always think, “Oh, what did I do well today?”

That makes me feel much better than focusing only on things that I haven’t achieved in the day.

Madhavi: I think it’s because of your surname, Isha Singh, he thinks you’re a Punjabi. Because a lot of Punjabis have the Singh surname.

Okay, maybe that’s why he comes and starts talking to you in Punjabi, assuming that you understand Punjabi. But yeah, even small things. Suddenly I took him to the supermarket a few days ago. He’s very verbal, but sometimes he just doesn’t speak. And mostly he says no for everything. So I asked him, “Do you want something?”

Then he said no. Then again, while I was paying the bill, I said, “Do you want something? Go get it. I’m paying the bill.” He said, “Nothing. I don’t want nothing,” he said. I said, “Okay.” So when he says things like that, I really feel happy because he’s expressing very clearly that he doesn’t want anything.

So that really makes me happy. This may be a small thing but for me, it’s a big thing because he’s using that word appropriately at that time. So, yeah, I think small things need to be celebrated.

Conclusion

Madhvi: As we close another chapter of our journey together, I want to leave you with a thought. You’re not alone on this path, whether you’re seeking guidance, resources, or just a sense of belonging. We are here to help, every step of the way.

For more insights, support, and resources, make sure you visit Ananya’s website, www.asap.org.in. And if you find yourself needing someone to talk to or have specific questions, feel free to reach out to us at +91 -9848513192.

At Ananya, we extend our support not just to our children, but to their incredible mothers and families, providing a helping hand whenever you need it.

Thank you for joining us today. Remember, this journey might be challenging, but it’s also filled with moments of joy, growth, and profound connection. We look forward to continuing this conversation with you, offering our support, expertise, and a community that truly understands.

Until next time, stay strong, keep loving, and never hesitate to reach out.

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