Podcast #3: Taking the First Steps: Consultations & Assessments for Your Child’s Development

Join Madhavi Adimulam, a mother of a young adult with autism, and Isha Singh, a seasoned child psychologist, as they explore the often-challenging journey parents face from receiving a child’s diagnosis to finding the right therapy and support. In this insightful podcast, they share personal experiences, expert knowledge, and practical advice to help families navigate the complexities of child development and special needs. Discover the importance of early intervention, building trust with therapists, and the value of parental self-care in this supportive and informative discussion.

Introduction

Madhavi: Welcome to our 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 Adimulam, 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.

Parent's Journey from Diagnosis to Therapy

Madhavi: So, Isha, let’s talk today about what happens to parents after they hear the diagnosis either from the child psychologist or a pediatrician, or they themselves know there is something happening to the child, till they actually get to the right therapy center or the therapist. What happens during this time?

Isha: The most common thing that most parents tell me when they come to me is that when the pediatrician told them that it’s a developmental delay or the child could be a little delayed in certain areas, they go back to the elders and talk to them. Most of the elders tell them that it’s okay, another child in the family was also delayed in speaking or walking. It’s not a big deal. The child will grow out of it. That’s why they take time to come to us as psychologists or to a Child Development Center (CDC). They lose the time that is very important for the child. A few months go by, six or seven months, and then when the child finally does not speak or goes to school, they realize that there’s something significantly wrong and they need to see somebody.

Seeking Advice and Alternatives

Madhavi: Yeah, one could be the grandparents or elders in the family because in India, we always go to our family for advice. Another thing could be the internet, which is like an ocean, and they don’t know what information they’re finding is correct or reliable. They might even go to some godman, babas, or anything to do with religion. They might advise some pujas, ceremonies, or prayers to get over the difficult time for the family.

MadhaviI’ve also seen parents going to alternative medical professionals like Ayurvedic doctors, Unani doctors, and also some nutritionists directly starting nutrition programs with them. Some medical treatment protocols are also offered by doctors who are not specialized in treating children at all. I know a few radiologists who have autism programs running for children, and they do chelation and other harmful procedures. Another thing I found was hyperbaric oxygen therapy (HBOT). I’ve seen people doing stem cell therapy as a cure for autism, which is now banned in India, especially for autism.

MadhaviIn the process of doing all this, as you rightly said, the parents are losing the most valuable thing – time. They might spend 6 months to 1 year figuring out all this and spend lakhs of rupees. I know of parents who have taken loans for stem cell therapy, spending 10-15 lakhs, and after 1 year, they realize there is no help available and they’re left with a debt.

 

Challenges Faced by Parents

Madhavi: While doing all this, parents are going through personal battles at home. Husband and wife may not get along because one person agrees to the treatment while the other doesn’t. One person wants to take the loan, the other doesn’t. Family members may say there is a history of speech delay in the family, so wait for one or two more years.

MadhaviI know of parents who come and tell me that their husband spoke at the age of six, so their mother-in-law wants them to wait until the age of six before doing anything for the child. So much happens the moment they hear any news about developmental delay, and they never actually get to the right professional. They never even get to an early intervention center or a therapist who understands what to do when there is a developmental delay.

MadhaviA lot of parents don’t even understand the difference between a psychiatrist, psychologist, counselor, pediatrician, developmental pediatrician, neurologist, speech therapist, occupational therapist, physiotherapist, or early interventionist. There are so many professionals who can help, but it’s all jargon and noise for the parents.

Isha: If I had to find somebody for my child who was two years old or one and a half years old, I would definitely go and meet all these people. I’ll do some research, maybe have a list. Sometimes the hospitals nowadays give a list of four or five centers. I’ll visit all of them, talk to them, find out how therapy works in those centers, and look for certain qualities as to who’s the person leading the team and who has the experience in this profession.

IshaI’ll also look for what kind of environment that place has. Are they in this fixing mode where they are selling a fix or treatment for autism? Are they going to tell you things like they will make it go away for your child in two months? If they have any magic fixes, I will definitely not go for them.

IshaI’m looking for words like it is a developmental delay, it is going to take time, we don’t know exactly how long it will take, but this is a bit of a time-consuming process and we need to partner with you. You and I have to work as a team. We have to collaborate on this and give it six to eight months minimum before you see results. Also, be wary of packages they are selling – one year, two years, three years, five years, or lifetime packages. Look for people who are giving you maybe a three or four-month program because that’s a good chunk of time where you can start seeing small results. Maybe in eight months, you’ll see good results.

IshaLook for centers that give you that kind of realistic outcome. A lot of therapy centers will have young professionals, but the team leads or the people leading the young professionals should have at least 10 to 15 years of experience, proper qualifications, and consistent experience in pediatrics, especially developmental pediatrics.

IshaI would look for a team like that and also those who have time to talk to the mothers, not somebody who just writes prescriptions for medications for very young children, which may not be a good idea unless they have conditions like seizures. For a three-year-old child with autism, if they’re giving medications for hyperactivity, I wouldn’t go there.

IshaThere are some centers run by doctors where there are a bunch of therapists outside the clinician’s room who are just doing therapy randomly without proper supervision because the doctors are busy with psychiatric clinics. I would like parents to choose early intervention professionals and rehabilitation professionals with experience who supervise the team in person and plan every child’s therapy.

Help Your Child Thrive

Acceptance and Realistic Expectations

Madhavi: I just wanted to add one more thing. When parents are told that their child has a condition where there is no cure, for instance, a four-year-old child diagnosed with severe autism, professionals usually say there is no cure. You have to manage the condition, provide therapy support to the child, it’s going to be long-term, maybe lifelong, and you might have to support the child. Parents are not ready to listen to that news. They are looking for somebody who’s going to say there is a cure, that they will cure the child’s condition in six months or one year. That’s what they are going to believe more than somebody who says there is no cure and it’s going to be lifelong.

MadhaviParents have to be wary of people who are going to sell these kinds of quick fixes or cures for their children’s conditions where there are none. I have a son with autism. He is 25 years old and still has autism. If I knew there was a cure, I wouldn’t be running Ananya. I’d be selling the cure.

MadhaviIf I tell a parent that there is no cure for their child’s condition and it’s going to be lifelong, in some cases I have to tell them because if the child is four or five years old and they are coming to us for the first time, I can’t tell them that it is going to go away. It is not going to go away. I know that it is a dilemma that I’m in. How do I break this news to them? How are they going to take it? How am I going to support them in these tough times?

MadhaviI find it extremely hard to talk to highly qualified parents, especially if they are doctors. If the parents have been in denial, being doctors themselves, and have not started early intervention early enough, the child is already going to school. Somehow, they managed to get the child into school using their money or connections. But beyond a certain time, the school will simply say, “Sorry, there is something wrong. The child needs help.” Then we have to break the news to the parents, and all hell will break loose. The parents will come at us professionals very hard, saying, “Prove it to me. Is it autism? How do you know it is autism?” Unfortunately, I’m not a doctor. I don’t have a blood test report to show that it’s positive for autism. It is a psychological, psychometric, and developmental assessment based on clinical observations, which the doctors understand, but still, they want us to prove it time and again.

Madhavi:  You have to be wary of people who are giving you quick fixes, especially when there are pervasive developmental conditions, neurological disorders, where there is no cure but only management.

Seeking Alternative Treatments

Madhavi: I can give an analogy of my own experience with my mother’s cancer diagnosis. Cancer is life-threatening, unlike autism or any of these conditions. But I went through the same process of running from pillar to post, trying to figure out how to save her. I didn’t want her to die. That was my only agenda at that point in time.

MadhaviSomebody told me I should do reiki. I called the reiki person and said, “Can you do reiki for my mother? She’s diagnosed with cancer.” He said, “Yeah, I charge X amount of money per day, and I’ll do this reiki healing for your mother. You have to go to the Ramakrishna Math Temple. There you get these sandalwood incense sticks. Every day you need to light these incense sticks two to three times a day in whichever room your mother spends the most time. It changes the vibration of the room.” I did that.

MadhaviThen I spoke to my oncologist and two or three other oncologists and got their opinions. I was doing pujas in the temple, but I was doing everything in parallel. I did not wait for reiki to work for six months. I probably would have lost my mother in those six months.

MadhaviI think when parents want to try alternative ways of therapy or treatments, they should not stop the mainstream therapies. They should start early intervention while they do whatever they do on the side, like going to temples, godmen, reiki, acupuncture. A lot of people told me that acupuncture has helped them, as well as hijama and many other things they do with children.

MadhaviI totally respect those professionals who are doing this for the children, but we also need to have some kind of evidence available for these treatments. Show me the papers, show me the publication, show me the research, show me the evidence. That’s when I’m going to believe that this works. Then you can stop therapy and do this as a treatment. Right now, I don’t think there is a single paper published, or at least those papers which are published have not shown that this is the only treatment available for autism, ADHD, or any other developmental condition.

Importance of Early Intervention

Madhavi: Parents have to look for early intervention centers or early intervention professionals. Even if it’s one person who can help the child, they should find that person and give them time to work because no therapist can do magic, and there is no magic wand that they have. They need to wait for maybe a few months to decide whether this person is doing a good job or not.

MadhaviThey need to constantly interact with the therapist, be in touch with them, talk to them, and also collaborate with them, partner with them so that they can do something complementary with the child at home to see results. For me, the keyword here is time. Do not waste time. The moment you get a diagnosis, act upon it. If you want to do alternate things, do it, but do the mainstream solution, which is therapy.

Isha: Time is very, very crucial. Once a pediatrician or a doctor says that the child has a developmental delay, you can go for a second opinion, third opinion, fourth opinion, as many opinions as you want. As you rightly said, go for parallel treatments also, but follow the course of scientific evidence first. Then try everything else. At least you are giving the support and help to the child that is needed, rather than just trying something additional. Additional is always welcome, but you can’t remove the main course of action or therapy that the child needs.

Understanding Different Professionals

Madhavi: Isha, let’s also talk about the difference between a psychiatrist, a psychologist, and a counselor.

Isha:

Sure, Isha. Let’s break it down. Here are some of the key professionals you might encounter:

  • Psychiatrist: A medical doctor specializing in diagnosing and treating mental health conditions. They can prescribe medication if needed.

  • Counselor: Provides general emotional and psychological support but cannot diagnose childhood conditions (at least in the Indian context).

  • Clinical Psychologist: Trained to diagnose and assess childhood developmental delays and learning disabilities. They can also provide therapy and counseling.

  • Speech Therapist: Works on improving a child’s communication skills, including language development, articulation, and fluency.

  • Occupational Therapist: Helps children develop the skills they need for everyday activities like dressing, self-care, and handwriting.

  • Physiotherapist: Addresses physical development and movement issues, improving a child’s gross and fine motor skills.

  • Behavior Therapist: Uses behavior modification techniques to help children learn new skills and reduce challenging behaviors. In India, this role is often performed by psychologists with specialized training.

  • Early Interventionist: Works with a child’s development from birth to six years old, focusing on areas like motor skills, communication, and social interaction. They typically require a postgraduate diploma in early childhood intervention.

Building Trust with Therapists

Madhavi: So have you seen any instances of trust issues in parents when they come?

Isha: Both trust issues and non-trust issues. Recently, just this morning, I met a parent whose child has not been eating at all for the last 1.5 years. We are doing therapy for the child, and today, for the first time, the child ate a whole banana. I got the gift of the peel of the banana to the mother, and the mother was really in tears because all the effort that she has been putting in and putting trust in us for 1.5 years is actually paying off. You can very well imagine how happy she would have been to just see the peel of a banana.

IshaSecond, just a few weeks back, a child had transition issues, so the child cries when they come to us. It takes two or three weeks for the child to settle down. Every time the child is crying, if the mother sends us or wants the child to come back to her, the child will never adjust. That is the trust issue we are talking about here. Every time I have to remove the child from the therapy center or therapy room and get them to the mother, the child reinforces the behavior again. So the child will take more and more time to settle down.

Madhavi: Yeah, that’s true. I always tell mothers to just give them a little bit of time to settle. It’s like separation anxiety. It’s like the first day at school for them, and they’re sometimes even

younger than school-age children. They are just one and a half years old sometimes when they come, maybe even a year old because we have worked with 14 or 15-month-old children as well. We need to give them a little bit of time.

MadhaviWe do allow parents to come into the therapy room when the child is very, very young, and they sit with us. Then slowly, they leave the room once the child has accepted the therapy as something that they are coming to every day. Mothers are watching us on CCTV, but they’re very, very anxious. Sometimes mothers are crying downstairs, and the child is crying upstairs.

MadhaviTrust is very, very important. Like we trust school teachers, we leave our children in school for six hours, hoping and knowing that my child is safe in school. Here, the child is with us maybe 45 minutes to one and a half hours. I think if they can trust us and leave the child with us, and of course, we do teach everything that we do with the child to the mother so that she can go back and contribute to whatever we are doing, we can partner with the mother.

MadhaviBut sometimes having the mother in the room could be a bit of a challenge for us because the child is running back to the mother constantly, and we are not able to engage with the child at all. It becomes almost like there are two power centers in the room. One is the mother, and of course, the mother wins. We lose all the time because it’s the mother. The child is constantly running away from what we want to do and trying to be with the mother.

MadhaviSometimes mothers are so highly stressed that they can’t work the way we can work with a child. They are overwhelmed with the diagnosis itself. They’re like, “How can we get over with this as fast as possible?” They are in that mode. We have no baggage. We are emotionally detached from the child. We are able to look at the child as a professional and say, “I see this delay. I have to address this delay.” For the mother, it’s like, “My child is diagnosed with autism. How many more months is it going to take? Is he going to go to school?” I don’t have all that baggage. For me, this is my goal this week. And if I can achieve this week, next week I can go to the next goal. That’s all I have in my head. I have no other agenda in my head.

MadhaviSo leaving the child with the professional gives us the power to help the child. It also gives a little bit of a break for the mother. A lot of mothers in Ananya go for a walk when they leave the child for one and a half hours. They go to the gym. Some mothers are learning to drive their cars. They just sit and watch a movie on Netflix, whatever it is that they want to do. They’re getting time.

MadhaviI think building trust in the therapist is extremely important, and understanding which therapist can do what for us. If a therapist is offering a few more services than what they’re only qualified for, that’s okay too if you think the therapist can do the job. That’s my take on this.

 

Conclusion

Madhavi: 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 on 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.

Enquiry Form

Tell us a little bit about yourself