Parenting a Child With Special Needs

Cindy Lopez:
[00:00:00] Welcome to Voices of Compassion, CHC’s podcast series providing courage, connection and compassion, highlighting topics that matter to our community, our parents, families, educators and other professionals. This is Cindy Lopez, thanks so much for joining us today. Our topic is about parenting a child with special needs from a parent who is living it. You know, it’s a given, parenting is hard work. Raising a child with special needs brings parenting to a whole new level. Nobody can really prepare you for it, you just have to live it, make it work and find joy in it. Today’s podcast episode features Dr. Joaquin Burciaga, a neuropsychologist at CHC who is also a father of a special needs child. Make sure to listen in to hear about Joaquin’s journey as a parent, what he and his wife have learned and how they make it work for their family and find joy in the process. Welcome Joaquin, is there anything else about yourself that you’d like to share with our listeners?

Dr. Joaquin Burciaga:
[00:01:09] Yeah, I really love working at CHC and part of the reason why I love it so much is that I get to kind of share a little bit about myself with kids and parents who come into my office. You can’t see it right now Cindy, but my office is just full of legos and Star Wars legos to boot, that I’m just really this big kid at heart. And I feel that that really allows me to connect well with our clients, whether they’re five years old, fifteen years old or twenty-two years old.

Cindy Lopez:
[00:01:42] So Joaquin, in addition to being a neuropsychologist at CHC, you’re also a dad of a young child with special needs. Can you talk about what that looks right now, especially with COVID and shelter in place and learning at home?

Dr. Joaquin Burciaga:
[00:01:57] Yeah, certainly. So like most parents, we really thought this distance learning thing would last a few weeks, maybe a few months at most, and that’s kind of what we had initially prepared ourselves for. And then slowly over time as this shelter in place and distance learning thing continued to get expanded and extended, part of our living space was transformed into a preschool. And so  most of our living room now looks like a preschool.

Cindy Lopez:
[00:02:21] So thinking about your daughter and I’m picturing your living as a pre-school, sounds like fun to me. It’s bringing me back to my beginnings when I started in early childhood, but can you tell us a little bit about your daughter and the kinds of challenges and strengths that she has to just give our listeners a little bit more context?

Dr. Joaquin Burciaga:
[00:02:44] Sure, so, our daughter was born at 27 weeks due to some health complications that my wife had developed during her pregnancy. We knew early in her development that she had a heart defect; it was a minor defect that we were told could be repaired when she was about a year old. So fast forward and my wife was told that she would have to deliver within hours and our daughter’s heart surgery got pushed up from a year of life to four weeks post delivery, before she was even two pounds. And we were told that there were some complications that could happen as a result of anesthesia and surgery and one of those was that she could potentially suffer some hemorrhages in her brain. And she made it a few days before she had a mild hemorrhage, it was an intraventricular hemorrhage. So it was in that little fluid filled space of the brain the bleed kind of extended along the, the edges of it. And being a neuropsychologist, both my wife and I knew the kind of challenges that could present and we’re kind of already thinking about the worst. So she stayed in the NICU for about five and a half months, and we knew we would have a very, very long road ahead of us. She’s g-tube dependent for most of her feeds. She continues to be mostly non-verbal, so she has a few words that she can communicate with, communicates with a lot of signs and gestures, but her receptive language, her understanding of what we say and ask of her, is fantastic. So well that we know she understands things so that when she doesn’t do things, we know it’s that she didn’t understand. And as she continued to develop, as I mentioned, there was that language delay and there were also some other concerns that kind of emerged as she continued to develop, so concerns regarding her walking. She took a really long time to walk, and she was eventually diagnosed with cerebral palsy and she miraculously actually did end up walking and she walks, she runs, she can’t jump yet, but she’s getting there. And then later in her development, she was diagnosed with autism as well. And so there’s a lot of those challenges that kind of emerged over time, but you know, in terms of strengths, one of the things that was readily apparent early in her life was that she is a fighter and she has beaten so many odds, the odds of never being able to walk, she definitely walks, the odds of never being able to communicate clearly, she definitely can communicate her needs, not always great, but she can communicate her needs. And she was diagnosed as being legally blind, but she’s doing a lot to see. She can’t actually see quite well, because of her hemorrhage there’s areas of her vision that are not fully there, but she’s always been this kid that just amazes me with how much she has had to endure and how much she’s overcome and how much she continues to overcome.

Cindy Lopez: 

[00:05:37] Wow, sounds like we could take a pointer or two from her right now  with all of us feeling overwhelmed by our circumstances. Thank you for sharing about her. So it sounds like you’ve had to create kind of a space for your daughter to learn in a different way. And it’s so interesting because I think that we all believe that school has to be a certain way, that it kind of needs to look a certain way and I think we’ve learned a lot about that in the past year. So what have you learned about that, that you can share with other parents?

Dr. Joaquin Burciaga:
[00:06:15] Yeah, I mean, one of the things I’ve definitely learned is just looking back at school. It’s amazing that we were able to sit still in a classroom for that long. And certainly we had recess and activities and circle time, but just the expectation that a child can sit in a single space for hours a day is just something that in the classroom seems to make sense, but when you’re at home, that that same expectation just doesn’t really fit. And so, you know, we, we had to let go of that idea, granted my daughter is in pre-school, so she only has a few hours of instruction a day, but just the expectation that a child is going to sit at their desk or at their table, sit perfectly still, cooperate with everything is something we had to throw off the window very early.

Cindy Lopez:
[00:07:05] Yeah, it’s so different now and it sounds like you and your wife have really worked to design a program that optimizes learning for your daughter. What happens when your daughter is not really on board with that, what do you do?

Dr. Joaquin Burciaga:
[00:07:19] Oh yeah, I mean certainly the, the few words that she does have, one of them is done or all done. So she, when she is done with something, she will turn to me and say, “dada all done.” And it’s clear that she’s not going to participate in that activity. And when we’re doing, whether it’s circle time or her occupational therapies or her speech therapies, where there is some engagement that’s required, you know, we certainly say okay, we can take a short break. We’ve kind of used the timeout gesture from football as the designation for a break, for a short time out. We allow her to say, I don’t want to do this for a moment. And there have even been days where she just didn’t want to participate in that entire session. And I know as parents, we get hung up on the, “but my child has to participate in all aspects of school.” It’s sometimes okay to allow for the kid to just check out for a moment or for 30 minutes and let them have that mental recharge to get back in. You certainly don’t want to let them do that all day and every day, but if that’s needed every now and again, there’s not much harm that will come with that.

Cindy Lopez:
[00:08:23] Yeah, we were doing a Parent Ed session for a school locally and one of the clinicians said you know this duel role you have right now of parent and teacher, it gets kind of confusing sometimes, but if you have to choose between your roles, parent or teacher, choose parent because that relationship is so important. So Joaquin as you and your wife have designed this program for your daughter, what are some important aspects of that program that would be important for other parents to hear as well?

Dr. Joaquin Burciaga:
[00:08:53] Yeah. You know, one of the things we did try to do was to try to implement some of the things that were happening in school or at her preschool to maintain some of that consistency between settings. So, after much hemming and hawing we did develop a visual schedule for her to give her not only the layout for the expectations of her day so she knows when it’s time to brush her teeth, take a potty break, those types of things, but also, you know, having the schedule for class, it’s time for circle time, it’s time for OT, it’s time for speech therapy. And so that way she has the expectation of what’s coming next. And so when she’s asking for, “can we go outside or can we do this,” we can say, well, we’ll go outside after we finish these things. And so I think providing consistency, providing a routine is really helpful for a lot of kids. It’s helpful for adults and  if you know what to expect, it just, it just makes the day flow a little bit easier, but at the same time, you want to make sure that you maintain some flexibility in your schedule. You can’t always plan when you have to go to the bathroom and so we have that same expectation for kids and you also can’t always plan when energy is going to be low or engagement is going to be low and being able to say, okay, you know, you don’t have to participate in, in speech, but how about instead of speech, we will sit here and we’ll read this book or do this other activity that can just be kind of considered something like an asynchronous learning activity.

Cindy Lopez:
[00:10:18] Thank you for tuning in!  Just a note, before we continue on with today’s episode,  we hope you’re following us on social media, so you don’t need to wait a whole week between episodes to get engaging, inspiring and educational content from CHC. Our social handles are linked on our podcast webpage at  podcasts.chconline.org.

[00:10:42] So Joaquin it sounds like you and your wife have really learned a lot about being parents of a child with special needs and you have such a positive, healthy perspective of that. So I’m wondering, what advice would you give to parents about your journey?

Dr. Joaquin Burciaga:
[00:11:00] Yeah you know one thing I do want to clarify is that my wife and I are not perfect by any stretch of the imagination. You know we try our best, we really do. And there are certainly days when, you know, your best just is not always good enough for your child. But you know, when we kind of just think about all the expectations that have been thrust on us as parents now, not only are we parents, but we’re also her occupational therapist, her speech therapist, her physical therapist, and constantly working on these dual roles of being a parent, being a teacher, being a therapist, you know, the, the thing that we’ve really had to remind ourselves is that we need to be kind to ourselves and to be patient with ourselves because the situation that we are currently in or currently living in is not ideal for anyone. It’s full of stress and we’ve really had to figure out how to manage all of the expectations of work stress, life stress, school stress for our daughter, and then managing all of her needs has definitely been a challenge. And we’ve had to remind ourselves to be patient with ourselves, with our daughter and to be at the same time, kind to ourselves to allow things to fall through the cracks. Things don’t always have to go as planned and sometimes it’s her school needs that will have to fall through the cracks, or sometimes it’s work needs that will have to fall through the cracks and being okay with that I think is something that took a lot of getting used to for us. And I think a lot of parents still struggle with that, where they have the expectation that everything always has to go as planned and just allowing yourself the ability to let your best be good enough.

Cindy Lopez:
[00:12:40] Yeah. Yeah, I’m reminded of a podcast episode we did with Dr. Joan Baran and she said something similar, she said, “you’re good enough is good enough.”  I’ve said that to myself many times in the past year. So as a parent, you’re working 24-7 to make sure that your child has this optimum opportunity to learn and to be happy and feel good about herself. So you’re so focused on her and her needs, I’m wondering what do you do to take care of yourself?

Dr. Joaquin Burciaga:
[00:13:15] Oh my gosh, this is the eternal question, right. Even before COVID and before shelter in place, what do we do to take care of ourselves. One of the things that my wife and I have really, really been trying to do is to allow ourselves time to not be alone, but just time to ourselves, so that if there’s something that’s that we want to do, whether it’s read a book, play a video game, listen to a podcast, we do allow ourselves that time to say, hey, okay time out, I need to take a 30-minute break, hour break and have the other person step in. We’ve also been trying to be more consistent in giving ourselves time and space to exercise. We’ve lost the opportunity to go out for exercise, it’s kind of come back now, and so, you know, being able to say I’m going to work out in the living room, no preschool at this time, is something that we’ve also allowed ourselves.  So being able to have that space, that space for exercise, that space for self is something that we’ve really worked hard to try to provide for each other.

Cindy Lopez:
[00:14:13] Yeah and I think  if you could just give yourself a little grace, that goes a long way to kind of taking care of yourself as well. So, I’m also thinking about when you first brought your child home and you were trying to figure out, you know, what was going on with her and it sounds like she had a couple of different evaluations and diagnoses. What advice do you have for parents who are seeing things in their child that they might be concerned about? What about an evaluation, what about treatment, what about seeking help, what advice do you have for them on that front?

Dr. Joaquin Burciaga:
[00:14:52] Yeah. You know, I think a strength that parents have is that they know their child. They know when something doesn’t feel right or something, doesn’t sit right with them.  And so being your child’s advocate when you feel something isn’t right I think is often an important thing that parents can do.You might meet some pushback, I, I can’t tell you how many parents I’ve met that said you know the pediatrician said, wait until they’re five or wait until they’re seven, they’ll catch up. But they had that nagging feeling that just something wasn’t right. And we fell victim to this as well as parents. You know, we’re, we’re both neuropsychologists, my wife and I, and we still relied on someone else saying, oh, just wait until she’s three. And we’re like, okay, we won’t worry about that until three, because we had so many other things to worry about. And we had to remind ourselves that we are our child’s best advocate. We know her well, we know her abilities, we know where things don’t seem right. And again, I feel like I have kind of like the inside track view because I am a neuropsychologist, I do work with children and do provide assessments and know how a child is typically supposed to develop that when something started to not feel right we did go to our pediatrician and we did ask for an evaluation from a developmental pediatrician. You know just don’t be afraid to be the squeaky wheel if you’re concerned about your child. At worst, you might annoy your pediatrician, but at the end of the day, the result is making sure that your child is getting the support they need.

So if this Isn’t your first child and you’ve had the benefit of having a, a child, grow up first and you’ve seen their milestones, if your child is lagging behind your first child or your second child, it’s okay to, to say, hey you know I’d like to follow up with my pediatrician and find out is this normal, should I be concerned about this? If you don’t have that benefit, there’s always friends, classmates or schoolmates where you can kind of, and I hate to say this, compare your child to other children, but there are certain typical developmental milestones that should occur by a certain age. And if you have this inkling that you know there’s something not right or my child is lagging in some areas, it’s okay to ask questions and ask for an evaluation. Certainly some kids develop on different timelines and their development has, kind of, takes a different trajectory, but it’s always okay to be concerned as a parent to make sure that you’re getting what your child needs.

Cindy Lopez:
[00:17:18] Yeah, thank you. Also for listeners if you are wondering about your child or if you have questions, we have some services at CHC that might be helpful, you can call to schedule an evaluation with someone like Joaquin, a neuropsychologist, or psychologist, or you can also take advantage of our free parent consultations, where you can can spend 30 minutes talking with one of our clinicians about what’s going on and they can give you some advice and guidance regarding next steps. You can find out more about that at chconline.org. So Joaquin, if there’s one thing that you would hope our listeners would take away from this episode today, hearing you, what would that be?

Dr. Joaquin Burciaga:
[00:17:59] You know one of the big things that I hope parents take away is that not every child is the same and focusing on your individual child’s needs is the most important thing that you can do, being your child’s advocate and being able to provide and find the right supports for your child is really important. And part of doing that really is asking questions when you feel something isn’t right and being that squeaky wheel for your child, to make sure that they’re getting the supports that they need.

Cindy Lopez:
[00:18:30] Thank you Joaquin for sharing your journey with us today about your child and what you and your wife have done to give your child every opportunity to learn and to just be happy and feel proud of herself and to our listeners, I hope you’ll join us again next week for our next Voices of Compassion podcast episode.

[00:18:53] Thank you Joaquin.

Dr. Joaquin Burciaga:
[00:18:54] Thank you, Cindy, take care.

Cindy Lopez:
[00:18:57] Find us online at  podcasts.chconline.org. Also, please follow us on our socials.  Find us on Facebook at chc.paloalto and Twitter and Instagram at CHC_paloalto. You can also visit our YouTube channel at chconlinepaloalto. And we are on LinkedIn. Subscribe to Voices of Compassion on Apple podcasts, Spotify and other podcast apps, and sign up for a virtual village email list so you never miss an update or an episode. I always love to hear from you so send me an email or a voice memo at podcasts@chconline.org or leave us a rating and review.  We look forward to you tuning in each week. After all we are in this together. See you next week.