Episode #55: Parenting Autistic Children: Finding Gratitude in the Struggle
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Parenting Autistic Children
In today’s episode, your host, Tonya Wollum, interviews Amit Chawla, a software product manager and founder of a financial planning company. Chawla has two sons, one of whom is autistic, which led him to become a certified financial planner and chartered special needs consultant.
Throughout the interview, Chawla shares his experiences of raising his son on the severe side of the autism spectrum and the struggles he faced in getting consistent treatment for him. He talks about how this experience led him to send his son to a residential school and how it gave him and his wife time to think about their future. Chawla’s wife was an attorney, but she went back to school to become an estate planning attorney, specializing in special needs and elder law.
During the interview, Chawla also discusses the unique perspective on life that the special needs community has and their ability to find gratitude in things that others may overlook. With his part-time financial planning practice, Chawla plans to continue helping families with special needs for as long as he can.
This episode is an inspiring and eye-opening conversation that sheds light on the challenges and triumphs of raising a child with special needs.
Connect with Amit:
- Podcast: https://planningforspecialneeds.podbean.com
- Facebook: https://www.facebook.com/MySpecialFP
- Instagram: https://www.instagram.com/MySpecialFP/
- LinkedIn: https://www.linkedin.com/company/my-special-financial-planning/
- YouTube Channel: https://www.youtube.com/@PlanningForSpecialNeeds
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Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/
Meet Today’s Guest:
Amit Chawla is a Software Product Manager and founder of My Special Financial Planning, a financial planning company that focuses on special needs families. He and his wife, an Estate Planning Attorney, have two boys and reside in Lexington, Massachusetts. Their oldest son is 13 years old and has Autism, which led Amit to become a certified financial planner and chartered special needs consultant. Amit’s goal is to help families with special needs members plan for a better future. He volunteers for a couple of non-profit organizations to provide pro bono financial planning services, and he and his wife moderate a private Facebook group called Planning for Special Needs. Amit shares openly about his experience with raising a son on the severe side of the Autism spectrum and how it led him to become a passionate advocate for special needs financial planning.
Episode #55: Parenting Autistic Children
Finding Gratitude in the Struggle
(Recorded March 11, 2023)
Voice of Tonya Wollum, the host of the Water Prairie Chronicles: In this episode of the podcast I’m talking with Amit Chawla, the father of an autistic son. He discusses the challenges of raising a child on the severe side of the autism spectrum, and the special needs community’s unique perspective on life.
Welcome back to the Water Prairie Chronicles. We appreciate you being with us today, and I have a new guest that I’d like for you to meet. His name is Amit Chawla. He’s a software product manager. He’s the founder and owner of a financial planning company. He has two sons, the oldest is autistic, and because of that, he understands some of the questions that parents might have about planning for their children’s future.
So, Amit, welcome to Water Prairie.
Thank you Tonya.
So would you like to tell us a little bit more about yourself? That was a really brief overview of who you are.
Sure, sure. Tonya. So, I’ll go a little bit back. Originally I’m from India, born and brought up in Delhi, and I was there until I was 20. Then I moved to California.
I was in California for about 10 years. Uh, then my job brought me to Massachusetts. Uh, it was 2011, uh, when I came to Massachusetts. Soon after we came here, my son was diagnosed. My oldest son was about three at that time, and he got diagnosed with autism. Uh, that changed the trajectory for me a little bit.
Uh, I had some other dreams, but I had to readjust those dreams. I became a lot more risk-averse. I had to make sure that I am able to support my family here. Uh, while my son was growing up, it was a challenge. Uh, my son, what we can call, he’s on a higher or a severe side of autism spectrum. The initial five years were extremely tough for us.
Uh, it was tough for us to see him regress. At one point he used to talk in sentences, then he lost his speech, then he started developing behaviors. Then he became aggressive towards others. Then he became self-injurious. While all this was happening, we were struggling with getting him the treatments or getting him, uh, seen by a number of doctors, neurologists, cardiologists, uh, psychiatrists, and a number of therapies, speech therapy, occupational therapy.
Along with that, trying to struggle with the public school. Trying to struggle with insurance companies, how to make sure that he’s able to get regular services, consistent services, how to make sure that he’s able to get ABA services that he needed at home. All of this continued for five years, uh, and we realized that we are losing this battle.
That’s when we decided to send him to our residential school. That was a long, long story. Uh, once he was sent or once he was away from our house, that’s when both my wife and I found time to think deeper as to what we wanted to do with our lives. Uh, I can talk more about my wife. It was a long and difficult journey for her as well.
Uh, She used to work when we were in California, but because of our son’s diagnosis, she had to stay at home. Uh, she was on, uh, a receiving side for sure. I used to go to work, so I was not too deep into as to what my son was struggling with and what my wife was struggling with. Uh, by keeping him home.
She, she survived through a bad, uh, bad phase of anxiety, uh, depression. Uh, but she has come out much stronger. I would say. We have, both of us have come a long way, a very long way. My wife went back to school after my son went to the residential school, uh,
and. I, I’ll probably cover more of it, uh, during our other, uh, discussions, but she’s an attorney. Uh, she’s been working as an estate planning attorney. She’s also doing part-time LLM to further specialize in special needs now and Elder Law so she’s been focusing on the legal side.
Over the last five years, I’ve been focusing on the financial planning side of, uh, special needs. I am a certified financial planner now. I’m a chartered special needs consultant, now launched my company middle of last year. I’m doing this as a side hustle. Uh, I do want to continue to support my family. As I said, I’m a risk-averse person.
I will probably keep my financial planning practice as part-time for probably another 15 years by the time. , it’s time to retire. Uh, I’m thinking probably I’ll retire when I’m 60. That’s when my younger one, uh, will be done with his college. And we’ll talk more about my younger one. . .
So you, you’ve, you’ve had an, an interesting road, but I like the, the mental perspective that you and your wife have taken on this.
Um, we do change a lot when we meet our kids. Don’t, you know, it goes, it goes beyond what we ever thought it was going to be.
It completely changed our perspective. And over time I have realized that people in the special needs community are different. They understand differences more. They understand their own natural cap capabilities more.
They are able to. Find gratitude, in things that usually you won’t if you haven’t gone through that experience. Yeah, so the reason I bring that point is, uh, when we decided to go for our second child, uh, my wife was very afraid, uh, probably, you know, that chances of having a second child, uh, with autism are significantly higher than the first one.
But since she was struggling so much and we knew that we are going to have a hard life, , I had to convince my wife that we have to go for the second one. Uh, I only saw a silver lining in it. I knew that if the second one also had similar problems. At least we’ve been through the experience, we’ll be able to manage it better and give that second child a better life based on our experience. But if things turn out well, I mean, there is, there is nothing better than that. And things did turn out well. Our second kid who’s seven years old now, he’s, he’s neurotypical very, very kind guy. Uh, I would say, uh, recently he won, uh, a recognition at school for his kindness.
And that’s what we told. That’s the best kind of recognition that anyone can get. Uh, so, uh, he’s seven years old. Uh, he was, uh, two when our older one, uh, went to the residential school. Uh, I believe we are at a fairly good mental state, fairly good emotional state, and in general, good career stage, uh, where we are ready for us to give back to the community.
Both me and my wife have learned a lot during this journey, how to recover from the grief, how to advocate for our son, uh, how to make sure that even though, even though we ourselves were not able to give him love and care at home, we were able to find the best possible place that can take care of him.
Uh, he’s been there for five years. Uh, I’ll say it again. He’s at the best possible place, uh, for his needs. Uh, over this time we, I would say it’s a blessing in disguise. Uh, because of him we found our purpose. We have a purpose in life. And over time, I’ve realized very few people, uh, find that, uh, during their lifetime, both me and my wife have discussed this several times, that we have this goal and purpose in life.
That if we are able to help people beyond ourselves come 30 years down the line when we are 75, or 80, I think we will be a much fulfilled souls thinking back in history that, we were able to make a difference in others’ lives. And all of this, all of this was because of our son. So even though, uh, He’s not able to understand maybe at some day, some point of time, uh, we’ll see how things go.
Uh, one thing, he’s, he’s a 13 years old, uh, boy now, even though he’s 13 mentally, he’s a two-year-old boy. He’s non-verbal, so we don’t know how much he understands, but we’ll see. We’ll see. We do know that he understands few things and he surprises us time to time. Uh, but I’m sure, uh, there will be times in future where he’ll be able to convey in some shape or form to us that we did, we did good by him.
Yeah. Yeah. Well, it’s, you know, and I appreciate you being willing to talk openly about your son and his situation, because a lot of times whenever I am talking to other parents, their children are more of a level one, level two autistic. And so it’s a very different path when, I mean, if you were diagnosed today, it would be level three.
I’m learning as I go too, as I talk to more people. The newer diagnosis, it’s, uh, level one is, um, a little bit of support. Um, it goes by the amount of support that’s needed.
Um, level three would, would need the most support. And in your son’s case, he, definitely is needing support to be able to, to function and to, to have a fulfilling life. Um, and even, to know that having him in a more consistent residential facility where they can meet his needs, that is that level of support that he needs.
But, um, it’ll be interesting to see in time. Because I, I am learning that, um, our, our non-verbal, our non-speaking, there are other ways of communicating. And I’m wondering if maybe they’ll find a way to help him learn to communicate through one of the non-verbal ways.
Yeah. Yeah. He does have, uh, his device, uh, where he’s able to choose that, okay, he wants to go out and want to eat.
If he wants to eat, eat what? So he’s been progressing, he’s been progressing on that a bit.
Yeah. Good, good. So, he has been learning how, how to use that.
Well, before we get deeper into this, um, this season we’ve been asking each of our guests to share three facts. And I use that “facts” in quotes here, about themselves, two of them being true, one being a lie. And we’re, it’s a game if they’ve ever played. It’s called 2 2, 2 Truths than a Lie. So I’ve asked Amit to prepare that for us as well.
So would you like to share your three facts for us, for our guests to try to guess which one they think is the lie, and which are the truths?
All right. That’s interesting. So let me start with the first one. Yeah.
For the first 24 years, I lived with a hole in my heart. It was about a two-inch big hole and I never knew it. I went for a physical, uh, when I was about 24, and my doctor heard something abnormal. She asked me to go get more tests done and the hole was identified and then the hole was plugged. And all of this was happening when I was trying to marry my wife.
So, it was a big wrinkle. Big wrinkle. But I’m all healed up with no more hole in my heart. That’s fact number one.
Fact number two, my wife’s dad and my dad were childhood friends. They used to go to school together. They even lived together when they were working. They used to cook together before they got married. Many years later, my family, my parents that is, and her parents decided that probably we should get married. In 2004 we got married, but we only got to see each other face-to-face one day before the marriage.
Fact number three. I am very comfortable jumping from cliffs. From cliffs. I’ll say that again. I’m very comfortable jumping into the river from cliffs. My first one was very smooth. My second one, I had my legs. And you can imagine what happened, I jumped into the river from about 15 feet high cliff, and that was an experience to live with
So if you are listening, check, um, you can put your guests in the comments for the video. If you’re on the YouTube video, if you’re listening on the audio, then check out our Instagram or our Twitter accounts and you can leave your guesses there.
And a week after we post this, we’ll put in the answer so you can check whether you’re right or not. If you listen to this later, you can always still guess and just check, check and see if you’re right or not. So thank you for sharing those with us. Yours, yours are very, very interesting. Um, facts about yourself,
So you’ve told us a little bit about, about your oldest child and raising a child on the spectrum. Um, can you tell us a little bit more about that?
Yeah, sure. Uh, while my oldest one was growing up, my wife started seeing concerns when he was one year old, one year old. So, he had delayed speech. Uh, she was reading stuff online, she was talking to people, and time to time she brought that to my notice.
But I was, I was ignorant. I said that kids are, are learning at different paces. He’s going to catch up. And at about, uh, 18-19 months, he started speaking and I. again, told my wife, you, you were concerned for no reason. He’s speaking in sentences now.
When he, wait a minute. Wait a minute. Eight or nine months?
Uh, 18 or 19 months.
18 or 19. Okay. Okay. , one second. Eight or nine months. This child is a savant. 18. 18 or 19? 18 or 19 months. Okay. Got it.
He started speaking, uh, then he was talking in sentences. Then slowly, uh, he started regressing. He started losing some of his speech and his, uh, usual autistic behavior started showing up, hand flapping, and then.
Uh, chewing up things and all. Uh, it took me some time to accept. It took me, I would say, at least five, or six months to accept that. This is something real, and this is something that we’ll have to deal with, uh, for our entire life. Uh, we did try out a number of different medications, and a number of different treatments, but nothing.
I mean, there’s no treatment out there, right? Uh, I do want to tell people while listening that go through this journey, uh, go through this journey. Yes, you will have to accept. Do try out a number of things. Uh, surprises may happen. Uh, there, there are people who have recovered, but keep your feet on the ground.
Try to start accepting that this is something that you may have to live for a longer time. Do try to listen to the mom if you are a dad. Moms have a very. I would say sensitive radar to see into these kinds of things. Uh, , they know when things are going right or when things are off. I wish I knew about this before.
I would’ve been able to support my wife better. My wife struggled quite a bit, as I mentioned. Uh, there were times, even, even when my son was growing up, I was doing my part-time MBA and my CFA, so she was all alone, uh, bringing him up at home. She used to have those anxiety attacks which now I realize that I should have been more sensitive about.
Uh, family is at then the most important thing in your life. Other things can wait. Yes, you have to do other things to support your family, but only family will be with you if everything else goes away. So while bringing up Ishan, I did mention about some of the struggles. Do try to seek help. Do try to reach out.
You cannot, you cannot survive this by yourself. Try to create a village around yourself. Try to be sensitive about others’ feelings and when they’re trying to reach out to you, try to see what they have to offer. That. There have been instances where we could have accepted more help, but. , we didn’t know how to even accept that help.
Do, uh, reach out to a number of nonprofit organizations. Learn how to deal with this. Uh, I do know that if you are raising a kid with special needs, there are instances when you are overwhelmed. There are instances when you won’t have time to think about anything else. You live day by day. You try to cope with what the next day is going to look like.
Try, try to take a step back, try to seek help. Try to think longer term. There is help available out there. There are a bunch of nonprofits that can help. There are a bunch of professionals, uh, that can help you in different aspects of your life. Be it legal, be it financial, be it emotional, do reach out.
No. Well, I was gonna say you mentioned some of the resources. What are some of the organizations or resources that you’ve worked with that you might recommend to families to look for?
So, uh, there are a bunch of resources.
Uh, first of all, if you are employed, your employer should be able to give you a list. Uh, there are a bunch of nonprofit, uh, organizations. ARC is one. There are, there are special needs, specific non-profit organizations that can help you, uh, with the initial guidance. Uh, we’ve come a long way. There are online groups and Facebook groups that you can join.
There are WhatsApp groups that are available. Uh, then try to reach out to the school, I’m sure school system itself is able to, uh, provide you connections, uh, government agencies, uh, if, if your child got diagnosed earlier, you’ll have access to early intervention and those agencies will be able to connect you with other relevant organizations.
There are insurance, uh, resource centers that can help you navigate, uh, the challenges, uh, with getting therapies. Getting treatment. Those can be covered under insurance. Um, there are other financial support, uh, support organizations that can help you alleviate some of the expenses that come with this. Uh, government waiver programs are available, uh, not only to support you financially, but also for our medical needs.
Right. You mentioned The ARC. Um, if you, if you’re listening to this, I’ll, I’ll put a link here, um, in the notes below and if you’re on the video, I’ll put it here as well for the interview that we did with The ARC of the Triangle, and that’ll get you, give you an idea of what types of services that they’re able to offer and will link you to their national link there too.
So, um, so that’s, that’s actually a great list of ideas of where to go because a lot of our parents that are listening, part of the premise of doing this podcast is to help parents know where to go. And, um, you know, those of us who have walked ahead of them for different reasons, I’m, I’m wanting us to be able to point new families that are coming in and starting their search now in the right direction.
So that was a great list. Whether their child is autistic or any special needs to follow through a lot of what you share shared just now. So, thank you for putting that together for us. Now you talked about your son being in a residential school. So is this um, like full year long?
Is it just part of the year? When is, when is he there?
So, this residential school is, uh, 365 days a year. Uh, they have both a day program as well as a residential program. My son started there in their day program, but within, within two months, we realized that we needed a full residential program. Uh, this residential, residential program is at this time about 40 years old, a very well-run organization.
They have a specialist in specialist in-house. Uh, they have 24 by seven nursing staff available, uh, while kids are in their group home. They have staff available to them all the time. So, to give you an example, my son’s group home has about nine kids living there. Uh, The staff comes about, uh, the full-time staff, uh, the, the staff that takes care of these kids, uh, all day comes into, into group home about 7:00, 7 30.
They get these, they’ve wake up these kids, help them get ready, take them to school, help them run their programs, bring them back to group home about 3:30, 4:00. Do regular stuff, regular educational programming, uh, vocational programming, what you say, uh, about, uh, 8:30-9:00, uh, the regular staff goes away.
They have overnight staff come in, overnight staff, they have two adults. One is always awake looking after these. , all of this is happening, uh, as a regular. Now, there are doctor visits, uh, that the doctors that are outside, they also have doctors come into the school okay. To look at them. So, psychiatrists, neurologists, uh, all of these, uh, specialists come in very soon.
They are going to start a dental program, uh, in school so that these kids don’t have to go out because it’s a big challenge for these kids to go out and receive all, all this medical attention. Now, while all this is happening, as I mentioned, they have regular programming going on, and 365 days, uh, not even Thanksgiving, not even, uh, New Years.
These, these teachers are there because this is what they love to do. And we have experienced that kind of love and commitment from them. Five years, I would say is, is a long time. But the way our son got care and love there, that fills our heart. And many people, many families, and many kids suffered through the Covid period.
Two and a half years was extremely tough for families with special needs. And we are fortunate that our son was supported with, uh, with this full-time program throughout this period. We, yeah, we did not have to bring him home. These guys manage it really well. Uh, we were not able to see him for about four months because they wanted to keep these kids safe and keep us safe. They wanted to create this bubble so that, uh, kids are not getting infected. But overall, uh, looking back how they were able to manage, uh, the pandemic and come out of it supporting our kids the way they did. Big, big kudos to them.
Wow. So, he’s there now. You said he’s 13 years old. How long will he be able to stay there?
So, uh, people are aware, I’m assuming people are aware of, uh, free and appropriate education for all. That’s, that’s a federal law. And they are eligible for free and fair and appropriate education until they are 22. Uh, so until they are 22, whatever is appropriate for them will be, uh, made available to them. So, they’re entitled to this. So, he will continue to be with this program until 22. I doubt there will be any miracle happening if things improve. If he doesn’t need the program, yes. I’ll, I’ll be waiting for that, but chances, yeah, chances are, uh, he’s going to be there until he’s 22.
Have you thought about what’s next? If, if he continues at the level of support that he needs now when he’s 22, so what will be the next step or what are you, like, how, how do you start researching those options?
So it’s, it’s, it’s a learning curve and given the trajectory that we have seen for our son, he will continue to need that level of support right. Now, one thing to note, when these kids reach the age of 22 entitlements end, right? By that I mean that you are not entitled, you are not going to be supported by laws.
Now, there are states and there are programs that are available to support these kids beyond 22, but you cannot rely on those programs. Governments change, laws change, budgets change. With those unknowns, you have to start planning ahead. . And that was one of the reasons I went deeper into financial planning and my wife went deeper into legal planning.
We wanted to make sure that we prepared ourselves in the best possible way to support our son, uh, for life. So there are things that you have to start doing, uh, when the child reaches the age of 18, when the child reaches the age of 22. Uh, how you can plan for those things. I’m, I’m happy to go deeper.
Right. Okay. And as we go into, um, to your actual work that I, I want to dig in more with that. Um, so before we leave this topic, is there anything else you wanna share about, um, parenting a son with, with severe needs, um, or any advice you wanna give to other parents who are at the beginning of that journey?
parents who are at the beginning of this journey, I would say try to build a village around yourself. Try to see how you can seek support from others. And if you have other kids, uh, who don’t have disability, try to see from their angle.
The life is long. There will be ups and downs. You have to ensure that not only you are providing the best possible support for a child with a disability, but also for the other family members you yourself probably need. , I know you have to support your child with disability, but you, you yourself, need support.
Uh, for that. I would say, try your best to prepare yourself to go out, talk to professionals to see how you are mentally prepared to support yourself and to support your rest of the family.
Voice of Tonya Wollum: Thanks for tuning in to this episode of Water Prairie Chronicles featuring Amit Chawla. Join us for the rest of his story in Episode 58 where Amit will share valuable insights on how to plan for your special needs child’s financial future. Don’t miss it!