October is Down Syndrome Awareness Month
What is Down Syndrome (Trisomy 21)?
Down syndrome is a genetic abnormality where the person has an extra set of the 21st chromosome. This is also known as Trisomy 21. People with Down Syndrome typically experience growth delays, cognitive disabilities, and have some distinguishing physical characteristics. Growth delays include physical growth and mental growth. Some examples include a delay in reaching common milestones such as sitting, walking, talking as well as physically growing at a slower rate than their typical peers. Cognitively, people with Down Syndrome tend to have lower IQs and/or learning delays. Most typically have some common physical characteristics like eye shape, palmer’s crease, big toe deviation, smaller ears, flatter forehead/nose bridge, etc.
October is Down Syndrome Awareness Month
What are some of the challenges faced by a child with DS?
Low muscle tone, delays as described above, having to work harder to overcome disabilities than typical children to learn or do the same thing as their peers, and certain health risks.
Publicly, children with Down Syndrome face challenges from perception. There is a general lack of knowledge or misinformation surrounding Down Syndrome. There are medical screeners that are done in utero that unfortunately can cause a tendency for a higher aborted rates for children with Down Syndrome.
What is your child's name? How old is your child? What is their and your typical day like?
Jude Barham
Jude Barham is a 5 year old with Trisomy 21. His day is typically like the day of any other child his age. He attends pre-school where he learns the basic preschool concepts: colors, shapes, alphabet, numbers, counting, social interaction, etc. Where his day differs from a typical 5 year old is that these concepts are more difficult for him to grasp than his peers and therefore, he must work extremely hard to master the same concept. Another aspect of his day that is a bit different is that he also has physical disabilities that he must overcome, so he has physical, occupational, and speech therapy pull outs during his school day. These pull outs are typically around 30 minutes in length and occur 1 to 3 times each per week. My day is not as impacted since he began taking therapies during his school day. As an infant and toddler, my schedule was significantly impacted with taking him to therapies and doctor’s appointments. Luckily, we are blessed that Jude is a relatively healthy child and most of our specialist visits are down to once or twice a year consultations now. At the end of the day, children with Down Syndrome tend to be more alike than they are different. Jude loves to sing, dance, and play just like all children his age.
How has COVID impacted your family life?
COVID has impacted our family indirectly. Luckily, no one in our immediate family has suffered from the illness, however, we have been taking extra precautions to ensure we continue to stay healthy. We try to stay at home whenever possible and make sure we practice social distancing, hand washing/sanitizing, and mask wearing while out. Our family has returned to work and school in person already. Before returning to work and school, COVID greatly impacted Jude’s social interactions. Since we were pretty much practicing safer at home and school was closed from March until August, Jude was unable to receive his therapies and had extremely limited interaction to peers his age. This of course caused a setback for him, but we are seeing improvements since regaining our routine in August.
Jude Barham
What interventions or strategies have you found that helps your child?
We have learned that Jude learns best through song and repetition. We have also learned to identify signs that he is becoming overly stimulated with his environment over the years and have learned that if we allow him to use a digital device and watch his favorite shows, it helps him to tune out his surroundings and begin to desensitize to the stimuli.
Disclaimer: Jennifer Barham has kindly written this blog but please keep in mind that she is nowhere near an expert in this area nor a medical professional. She is just a mom of a 5-year old that is taking one day at a time and learning a little along the way.
Podcast #31
Please check out this week's podcast featuring Keli Gooch, LPC/MHSP as she shares her journey raising her 18-year-old daughter Tayler who has a dual diagnosis of Autism/Down Syndrome. Keli is a brilliant writer and her blog can be found at keligooch.com. Her book"Watering the Soul: A 91-Day Purposeful self-care journal for care-givers"provides thought-provoking, practical and actionable steps.
Transcript
Marsh Naidoo (00:24):
Welcome to this episode of the Raising Kellan Podcast. Today is October 23rd, and you are listening to episode 31. October is Down Syndrome Awareness Month, and today we are joined by Keli Gooch, who is a licensed mental health therapist from Jackson, Tennessee. Keli blogs at KeliGooch.com as well as she's written an awesome book called "Watering the Soul". This is a 91-day purposeful self-care journal for caregivers. Not only is it directed towards parents that might be taking care of a child with complex needs, this actually would apply to anyone that is a caregiver. Today
Marsh Naidoo (01:19):
Kelly, welcome to the show.
Keli Gooch (01:24):
Oh gosh, thank you so much. Thank you for having me today. <laugh>
Marsh Naidoo (01:29):
Kelly, you are not only an experienced author as well as therapist. Your insight comes from parenting your daughter. Taylor, would you please share your journey?
Keli Gooch (01:44):
To start from the beginning? I had Taylor when I was 22, a long time ago, and at that time she had, Well, actually I had several tests done and they were both negative during my pregnancy until she was a surprised diagnosis when she was born, the doctors weren't prepared and it was a surprise. And so on the day she was born, she stopped breathing three times. She had to be resuscitated, so she went on to Vanderbilt, stayed there for a few days, and then after that she did pretty well. She didn't have to have heart surgery, which was a blessing. And so from there we got early intervention services and she entered the school system and she did, well, of course, my mom was an educator, so I also worked in the same school system. So we were blessed to just be a part of that community.
(02:37):
So everybody knew her, and so it was just a blessing to have that support there. And we, she's grown up, she's 18 now. She does have, I know, right. Time flies <laugh>, right? You're right. It does. It does. And before you know it, you know, have an adult. And so now she does have a dual diagnosis of autism. We received that diagnosis when she was around 15, which is super late, which is super, It's not uncommon that the diagnosis, especially with the primary diagnosis being Down syndrome, it's not uncommon to get a diagnosis that occurs later in life. So we finally got that diagnosis and that was through neurologist in Memphis, and I just felt it was necessary at the time to seek that because it gave her more access to the services that she needed. And so, yeah, she's 18 now. She is still enrolled in school. Yes, we are going in person. One of the side blessings of this Covid era is that small class size. Her class from size is even smaller, so she gets lots of attention, <laugh>, which is a good thing. So that's kinda where we are right now. I
Marsh Naidoo (03:55):
Have to ask this question here, but she often hear off the term Trisomy 21 <affirmative>. Can you tell me a little bit more about that, Kelly?
Keli Gooch (04:05):
There are three copies of the 21st chromosome, but typically in America it's referred to as Down Syndrome. And there's this misconception that you can have a little bit or a lot of it, but it doesn't work that way. Either you do or you don't have it. Now, there are other types of Down syndrome like translocation or mosaic down syndrome, and a lot of times those particular children may not have as many difficulties, but in the end, if you have Down syndrome, you either do have it or you don't have it. But most people refer to it as Down syndrome.
Marsh Naidoo (04:42):
What is Taylor into, What are some of her passions with her hobbies?
Keli Gooch (04:47):
<affirmative>. <laugh> funny. Yeah, she loves She's crazy about Headbands. It's the weirdest thing. She loves headbands. She's very particular about them. Let's see, She's kind of particular about her clothes. Of course, she loves YouTube. She watches the Strangest, so funny just to see what she's interested in and what she's watching. I think yesterday I found her watching a wedding in Korea. <laugh> <laugh> mean, Not that the video was strange, it's she's interested in the diverse array of topics. Yeah. So yeah, she's crazy about headbands. I would definitely say she loves traveling. The weirdest thing, she'll pull up out suitcases and she'll wanna go. And of course, we haven't been able to do any of that this year. So the Covid area pandemic really affect, not only us, of course, but lots of parents of children with special needs. It's been kind of difficult.
Marsh Naidoo (05:52):
Yes. What is the plan for the future? Have you
Keli Gooch (05:57):
<affirmative>? Yeah, that is something that, again, when your kids are younger, you kind of think of, but because every kid progresses at their own level you don't really know at the time. And I think as she's gotten older, and especially this year when you turn 18, there were a lot of different questions up in the air. Do I let her continue to go to school? Does she like that? Is that what is best for her? And particularly in our area, what service are services are available. And that's the thing about when you're taking care of someone with a disability a lot of times your area or where you live in dictates what your child or what your adult child can receive. And so for us, I decided to let her continue to go into the school system because a lot of services do not start until she turns 21. So day services, they won't start until she's 21. So yeah, she's 18 and she continues to go to school every single day, and she loves it.
Marsh Naidoo (07:02):
<laugh>. Well, I am interested about your content creation and writing with me as well. Writing is just a creative output. It just channels all your energy into a positive direction.
Keli Gooch (07:14):
Absolutely, absolutely. And I try to keep it positive for the most part. I actually started blogging writing for a hair company. This lady, I reached out for her and was writing for her some about hair products. And then I was like, Hmm, let me start my own blog. And so I did that. And when you go to my website, that's, that's what you're reading from when I first started. And so I wrote for myself. And then at the time, Huffington Post had their contributors network open, and so I submitted some things to them and those got published, which was so huge and so fun. And it's so funny that my mom was like, Hey, I need to buy you a nice computer. So she went out and got me the nicest <laugh> computer. She could, just a big supporter. And my husband was super supportive.
(08:05):
He's like, Hey, whatever you need me to do there. So that was awesome. That was to just support my creativity. And so I continued to write for Huff Post and then Scary Mommy, which there <laugh> kind of different, they're kind of edgy, but that was still fun to write for them. And then Today Show, I was so blessed to be able to just have some things printed because of course it's not about the likes and things like that, it's more about reaching that audience and those groups of people. Everybody's so connected on Facebook now, of course, I didn't have that <laugh> in the beginning. When she was first born, there was not this worldwide network whatsoever. And so it's different now. And so to be able to write and share things that people can identify with I think that's awesome. And so I did that for a while, and then I got into actually connected and started writing for companies because again, like you said, it's a creative outlook, but it's also an additional income source because as a mother of a special needs child, you have to plan for those things.
(09:16):
There are things like medical things that they need, and so we never want her to go without. And so yeah, it was an additional source of income until I started working for or contracting with marketing companies. And I still write for a B3 creative agency as well. And I write for other "coins over gossip", just things like that, other marketing outlets. I, it's been such a blessing to be able to write for them. If you notice, if go to my website, you won't see much that's new. And that's because time is of the essence. And I mean, I know as a podcaster that you are limited, your most valuable asset is time and you can't do it all.
Marsh Naidoo (09:59):
No. There are tools out there that you can maybe use to streamline your process when it comes down to a time,
Keli Gooch (10:07):
Is it? And so that's been fun. And then I had the opportunity to write a book, and it was just a fun process because I did it all myself. I had Photoshop and just did all everything myself from the graphics and everything that was so therapeutic to actually make it and then get it on Amazon. And even though that will make you pull your hair out, it's still a rewarding experience.
Marsh Naidoo (10:29):
<laugh>, no, I still have nightmares. Stay up in the middle of the night just trying to get to figure out how Kindle Create works, <affirmative>, because the way you have your book on day is not the way it gets printed
Keli Gooch (10:41):
Out. Absolutely, absolutely. And I guess, well, you understand <laugh> very complex. And of course, when I did my first one, it was through Create Space. And so that's before they had KDP and oh, my word, it <laugh> was quite rough, very rough <laugh>. And so you understand, But still even through that process to just do that and to just have that outlet again, to be able to share your heart with anybody, it's just an amazing experience. And so that was another part of the journey. So
Marsh Naidoo (11:16):
Keli, your book Watching The Soul <affirmative>, can you tell us more about that please?
Keli Gooch (11:23):
Yeah, I, <laugh> came up with this book after I met the year before. I had met several women in a Christian creative mastermind group. Did not have never met these women in person, but had just been in contact with them for every day for weeks and weeks, just about, because they're all in some shape or form. Writers, entrepreneurs, of course, moms, wives, things like that. But connected with these strangers in the group. And so they had this retreat that they did. And so I asked my husband, I was like, Hey, I really wanna go on this trip. I have not taken a trip by myself, <laugh>, I don't think ever. So he was like, Okay, I'll hold down the house. So yeah, I jumped on a plane, went to Virginia and met these Christian writers, and it was the most therapeutic experience I'd had in a very long time.
(12:18):
And so that's how the book just came about, how we as caretakers have to nurture ourselves and take care of ourselves so that we can take care of others. And even though that sounds cliche, you really do have to take care of yourself because you cannot take care of the person you're taking care of if you're not taking care of yourself. And so again, I know that sounds cliche, and so I, I created a journal for other women like me, or not even necessarily women, but other caretakers like me who just need someone to poke them and say, Hey, are you really taking a few minutes for yourself? Because again, as a caregiver, and sometimes the time is limited, when do you actually have time? Something that you do for yourself once a week? And I know at the time there wasn't much. By the time you cook, clean laundry, go to work, maybe work even a second job, there's not even 10 minutes and don't talk about going to therapy, then you have to talk about finding a babysitter. And so lots of complexities. And so I just wanted to create something that the caregiver could have that is purposeful, that is mindful that they could do every single day for three straight months, or even if they skipped a day, that's okay, but for three straight months, something that was mindful so that they could take care of themselves.
Marsh Naidoo (13:51):
Well, Keli, I've ordered my copy and I can
Keli Gooch (13:54):
Thank you, Right, <laugh>. Thank you. Thank you. I hope it is beneficial. And again, I'm a licensed therapist. I don't think I put that in there, but I am <laugh> licensed by the state of Tennessee as a mental health service provider. And so again, there's just those techniques of things that I would tell someone else that they were sitting in front of me, try this exercise for today. If you're finding yourself stressed out, having lots of anxiety, do this today and be present in that moment. Kick off those worries, things that you're worried about, forget about those, but just be present for the next five to 10 minutes. So those kind of things.
Marsh Naidoo (14:40):
So your strategies are just not based on the experience of being a mom, special needs mom, <affirmative>, it's also based on your professional experiences.
Keli Gooch (14:51):
Absolutely. So just kind of those things. And again, I knew that my target would understand the book is not for everybody. If you've never had to take care of someone or make those, and not necessarily bad sacrifices, but sacrifices that we as parents take, but even more so as a caregiver, there are things that you do differently. And so I just really wanted to reach that caregiver and just say, Hey, somebody sees you and they know that sometimes you don't always take care of yourself or sometimes you put yourself last. And so here's something that says, Hey, you need to do this for yourself. Yeah,
Marsh Naidoo (15:34):
Guys, check out Keli's blogs and her website is kelly go.com and it's K E L I G O O C h.com. She has some awesome reads in there. You also please go ahead to check that out. Can I ask you just give me one takeaway or one strategy that you can give those moms and dads listing out day to day? We touched on self-care, but is there anything that you can leave us with?
Keli Gooch (16:09):
I think just being present and not always comparing. I think the most difficult thing as a special needs parent is comparing your child to someone else. And this is something that I still walk through journey with looking at gains. And when you see children on TV who are making these amazing gains, and maybe your child is still struggling in this area, just remembering that every child struggles in some area, there is no perfect child. And just loving your child wherever they are, even in those hard times, just remember not to compare. And I think that that's probably the biggest takeaway I could say, is that your child is good wherever they are at that moment. We always want more, but at that time, just learn to accept the good of your child. So yeah. <laugh>
Marsh Naidoo (17:07):
Kelly, I am so honored that you're spending this time with me just educating us and telling us about Down Syndrome. Mm-hmm. <affirmative> telling and giving us those key strategies and takeaway and letting us know about your book and website as well, which I personally have really enjoyed reading your blog. So my dear, Well, as I said, Keli thank you so much and God bless and
Keli Gooch (17:36):
Thank you. Thanks for having me. It's an honor to be on here as well, <laugh>.
Marsh Naidoo (17:42):
Well, you have a great night and hope to see you soon.
Keli Gooch (17:45):
Okay, awesome. Thank you so much. You have a great night
Marsh Naidoo (17:48):
As well. You too, dear. Bye-bye. Okay, bye bye
Marsh Naidoo (17:55):
Guys. Thank you for listening to today's episode and we have come to the end of the show. Before we go, I would like to take a moment to celebrate our friends, Amy and Juniper, Renee and Donica, Luke and Linda Whitaker, Katie and Katie, Jordan, and Tommy, and a special thank you to Jennifer Barham. Jennifer has kindly written a blog for us to educate and create awareness surrounding Down syndrome, which can be found on the Raising Kellan Blog blog@raisingkillen.org. So please pop over there to read some of Jennifer's insights that she shares raising Jude. Once again. Thank you Jennifer. Guys Keli's book again Watching The Soul. I can't recommend this book enough for anyone that is a caregiver. It has incredible insight. We will be giving it away on Facebook probably this coming Saturday or Sunday the 24th or the 25th of October. So go over to the Raising Kellan Facebook page, and I will post more details on that. But this book, Watching The Soul has so much to offer. We have come to the end of this podcast. As always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.