Episode 1: Confronting Autism- One Parent's Journey
Oct 30, 2022Season 1Episode 1
MizzyM
Talking with a mother in regards to her experiences of joy and pain, in having a child with Autism, including how to get support and how to maintain inner strength.
This is a podcast for those who love to talk common sense about everyday issues. You will listen to a variety of guests that share common sense ideas through their life experiences by sharing what they learned. For any comments, questions or suggestions for future topics, please contact the show at: stand4commonsense@outlook.com Song title: Upbeat Indie Folk Music Music by Lesfm from Pixabay
Talking with a mother in regards to her experiences of joy and pain, in having a child with Autism, including how to get support and how to maintain inner strength.
This is a podcast for those who love to talk common sense about everyday issues. You will listen to a variety of guests that share common sense ideas through their life experiences by sharing what they learned. For any comments, questions or suggestions for future topics, please contact the show at: stand4commonsense@outlook.com Song title: Upbeat Indie Folk Music Music by Lesfm from Pixabay
Host:
Hi everyone. Welcome to Connecticut Common Sense where we'll be talking about all things common sense, after all, with all that's going on in the world today, who, wouldn't want a little common sense, right? So I'm your host Manju, and for today's episode we're talking to a young mother Shannon, who's raising a child with autism. And she's got a lot of common sense to share. So let's dive in and hope you enjoy the show. Shannon, tell us a little bit about yourself and about your journey.
Guest:
Okay, so I, um, have a daughter, um, with autism. My husband and I waited quite a while. To have her, uh, just because we are really career oriented people. Um, and so we were excited to have a child and we set up our life so that we would be able to provide for our daughter and be good parents. Um, and so I actually had no idea that, um, I would end up being a, a special needs mom, but I feel like I'm thriving and doing the best that I can, uh, taking care of our daughter..
Host:
Okay. Well, when did you start becoming aware that your child needed to be screened for autism?
Guest:
At the one year mark after her booster, she started rocking back and forth. Uh, she really disengaged with me and she exhibited other unusual behaviors. Um, babies are supposed to start talking at 12 to 18 months, and Bianca could only see a few basic words. It seemed She wanted to talk more but couldn't get the words out. Uh, Then, um, after a couple doctor's appointments, her pediatrician referred us to an early intervention program to have her screen for autism. Uh, and she tested positive and at 18 months she started the program and we ended up obtaining additional services.
Host:
Oh wow. Okay. Did you also, um, get a referral for some sort of a support group or anything that was recommended to.
Guest:
Uh, we got a really large packet that the early intervention provided us, and from there they, uh, gave us a lot of different links and groups, um, and different advocates to help us through the journey.
Host:
Okay. So how did you deal with this, um, along with your husband emotionally with the diagnosis and then the entire journey?
Guest:
Uh, in the beginning it definitely was a struggle. Um, and it was kind of unusual because, uh, you kind of point to yourself, your family and you try to think, are there genetics involved in autism? Um, are there autoimmune issues that were involved? And it was kind of interesting because at that time I ended up. Getting diagnosed with a thyroid condition, and it's really unusual, but a lot of moms that have cesarean sections and have a child with autism also end up, uh, having some kind of thyroid disorder. So it, I think it has to do with the stress of taking everything on. And then, um, Was kind of pressuring my husband to get tested because I kind of had a feeling that, uh, he might be on the spectrum because he was always told that he had an, uh, a little professor syndrome where he could memorize a lot of stuff. And he was very articulate for his age, and he acted more like an adult than a child. So that's when we kind of figured that he might have autism too. But he seemed, um, to always, uh, you. Kind of outsmart the test and all of his tests still came back inconclusive. And to this day, his tests always show that it's inconclusive. So, um, when you're on the spectrum, a lot of folks like doctors and engineers and scientists end up having, uh, Asperger's syndrome, which is high functioning autism. They're smart enough to out test any kind of trait. And then also they have learned to make up for their shortcomings by, um, almost being like really good actors to disguise that they have any sort of disorder.
Host:
Oh, that's really interesting. How did your relatives. Deal with that with you, um, and your husband, um, was it hard for them also, or, um, did they make your life a little easier in the sense giving you the support that you needed?
Guest:
Yeah, unfortunately, um, my family wasn't near me, uh, to help me, so I was kind of on my own with all of it. Um, and I recommend that parents actually find. Like support groups to to assist them and network with other families. A lot of families actually try to do play dates and things like that because their children usually don't like to interact with other children and they're kind of in their own little bubbles. So parents of children with autism. Usually like to plan play dates just to socialize their children more. And I would really suggest that families try to move near, um, really good friends or, um, extended, uh, family members that could help them because it is important to create, um, A network of people to, to provide emotional assistance or even, for instance, if you and your husband wanna go out for a date for a respite, um, that you have that opportunity. And, um, respite actually means, uh, short term relief of primary caregivers. Mm-hmm. Um, and there is a national respite network and they have a lot of resources that are available for families. But for me personally, I don't like respite because I miss my daughter too much. Mm-hmm. Right. And it. Benefits of respite, it might outweigh me having anxiety of, Oh, is she okay? What's going on? Do they need help? Um, and even for instance, when my mom and my husband used to watch her when I needed to go, Take a class or attend school for an entire day, my phone usually would blow up with text messages. So it actually didn't provide any help to have respite. And for me, um, for respite, it's almost more important to maybe get a V R B O or Airbnb by the beach or, um, some beautiful, um, outdoor scenery and just take your child with you and just have fun because that's a, a de-stressor and respite is really just meant to Um, so going on a nice vacation as respite.
Host:
Oh, wow. Well, that kind of leads me to my next question. Mm-hmm. how does your child communicate with you?
Guest:
So a lot of children, um, in the ASD population are nonverbal and about 40% of children aren't able to speak or have really difficult, um, Problems with, uh, basic communication. So for those that can't speak, there's programs on iPads or other tablets like Samsung or Android tablets where children can type out basic phrases to communicate with their parents. And then some families at an early age, they learn sign language. And so some children are able to communicate through sign language. But for me personally, Feel like those, um, apps are easier for children to type out answers or to pull words, to make basic phrases, to flash and show to their parents. And my daughter, um, has a really large vocabulary. She just doesn't know how to string along sentence, uh, Words together to form a sentence. So she usually just gives us three word answers, and even when we try to ask her questions, a lot of times she'll give us the wrong. Yes or no answer. And she'll get really frustrated and start whining or crying because, um, like for instance, if we ask her if she wants a donut, she'll say, No donut, even though she really wants a donut, And then when we don't give her one, then all of a sudden she starts crying. Um, so. A lot of times we just physically show her to figure out if that's what she wants or not. And then even sometimes if she says she doesn't want a donut, we'll just leave it on the counter for her and buy it anyway, because of course we know that she'll want a donut. Um, so it, it's really. Kind of frustrating with the communication and it changes all the time, whether she wants to use words or it needs to be kind of physically played out, like a little play, um, or even a science experiment where you wanna see what happens next. So it's a unusual situation, but you just have to keep working with your child to figure it.
Host:
Okay, well what do you look for, for example, in a school or from your teachers, um, to help your child?
Guest:
Yep. So, um, for like any other parent, you know, we're on Zillow or we're on, uh, great schools or, or, uh, niche.com to look at the school ratings, um, or even best schools. So you generally wanna look for a, a higher rating on a school because that often tells you that they spend more on the education system, um, than other communities might, and they, um, take pride in their schools. Um, so first what you do is, um, you know, seek out the best school or school district in your area, um, and then you wanna ensure that your child has a one-on-one paraprofessional who's a skills trainer to assist your, uh, child throughout the school. And then you wanna make sure your child also has access to weekly speech and physical therapy sessions to work on communication skills and to learn things like putting on a jacket and zipping it up. Um, and then also the school psychologist will work with your child to kind of see what level they are mentally and to see, uh, where they can push your child more to try new things. Um, and to also gauge their threshold of irritation. Um, so your, um, the best school districts will provide those services on. A biweekly or bimonthly basis, but you wanna always, um, make sure your child has a lot of speech therapy and physical therapy, uh, so that they gain more, uh, life skills while they're at school.
Host:
Okay. And when you decide with your husband to, let's say, go out for date night mm-hmm. or take a little bit of a break, um, what do you look for in a care?
Guest:
For that too. Oh. So, yeah, so a lot of times you can actually work with your special needs department, um, or, um, even your one on one paraprofessional. And a lot of times they know, uh, coworkers that might work at another school, um, in your district, um, to actually be babysitters. So that's how it ended up working out for us, where there was a woman who used to work at the elementary school and worked with special needs children and she, uh, was a great babysitter. And then even for instance, care.com has folks that are already paraprofessionals and they're already registered, uh, that you can reach out and, um, they do it on the weekends, uh, for extra income. And then even Facebook groups, um, for your local town usually have a babysitting club. Um, and, uh, we actually found a person that had a special needs sibling. So they, they, uh, were able to work with our daughter, but in general, uh, with babysitters, um, a lot of the times with special needs children because the parents are away, you just wanna make sure your child doesn't do attention seeking behaviors where they get destructive and they just have free time and they play because, The babysitter irritates them in any way. They might do something crazy. Like for instance, even when my mom and my husband were watching my daughter, um, my daughter was sneaking and opening up the refrigerator and taking eggs out of the carton and sticking them in between, uh, the sofa cushions. Oh my God. Yeah, just for extra attention. Um, because basically you have to keep an eye on them at all times, but kind of let them be free range. Um, and even, uh, one time it was kind of interesting, uh, we had a, uh, B C B A, which is basically a skills trainer, professional, um, that was observing our daughter and they were actually getting ready to allow our daughter to cut her hair with the scissors so that. Person was really book smart, but just didn't seem to have any common sense. It was kind of shocking that that BC B A ended up having a PhD but had no life skills, right? So you kind of wanna have a balance and kind of monitor these folks, like they need to have basic common sense. Um, but that, that was a really. Situation because you would've expected someone at that level to just intervene and take the scissors, like, okay, that's enough. We see that you're doing attention seeking behavior. But that, that person, I actually had to step in. So it was kind of a, a really bizarre situation where, Um, you know, he had all the credentials to be a B, C B A and had a lot of education and went to really good schools, but it's like, on the practical sense, he failed. So it, it's a really, uh, interesting situation where you have to work with a lot of professionals in the field, um, to make sure you're, your child's getting the proper care.
Host:
Right. Right. Of course. Well, What has been your greatest reward in this and your greatest challenge?
Guest:
Yeah, I mean, it, it's a lot more challenging than rewarding, but I have to say the greatest reward is to bring a child into this world. Mm-hmm. Uh, so all children are God's gifts to parents. And then the biggest obstacle is my daughter's ability to comprehend what's going on in everyday life. Um, even in a story, she's a great reader and has been reading since she was four and a half, but you can't ask her basic questions about the storyline. Um, and it's amazing because she's not able to string together a lot of sentences, but when you hear her read entire pages and entire books by herself, it, it's like very awe inspiring that. She's able to say all of the words. She recognizes all the words, but she just can't spit it out. Um, so again, all of these children are God's gifts and it's just building your relationship with God to figure out how to survive and how to help heal them and take care of them on a daily basis.
Host:
Right. Well thank you so much for sharing your story with me. Mm-hmm. and with other listeners. Mm-hmm. Um, I think, you know, both of you, uh, your husband and you are very courageous and, um, the fact. Um, you know, you are able to let us know all of the negatives and the positives, you know, as any parent, but you just have a little bit more of a challenge. Um, this has been very enlightening. And, um, just to end off this interview, what advice do you have for other families who have now become a part of the ASD family?
Guest:
So, autism has been more of a spiritual journey for me, and the most important thing is to consistently communicate with God and ask for guidance and strength. Uh, because without him and without you're a higher connection to your creator, you're not able to get through because it could be extremely overwhelming. And then from there, when you have that strength, um, you're able to seek out treatment, supplements, and other support. To help you and to help your child. And it's also important to explore the brain gut connection to improve the health of your child. So everything, um, Is connected within your body, so the brain is connected to the gut and even, um, things like, um, getting rid of heavy metals, getting rid of parasites in the gut, um, actually will improve the brain, the brain function. Um, so you're able to do like a heavy metal detox, a parasite cleanse, and then you can help your child's immune system. Probiotics and prebiotics, and then researching, um, different diets like for instance, the ketogenic diet. If your child has, um, Like a lot of hyperactivity to calm them down by reducing their carbs or, uh, for instance, um, improving their immune system by, uh, exploring the dairy and gluten-free diet to see if that might help. And then even going on a really simple diet and then bringing foods back into your child's diet would help. And all of this is, Really good to do over the summertime when your child's not in school full time, um, to see if you can make health improvements that way.
Host:
Right. And, um, of course you'll be, um, providing us any kind of link to any of these sites so that if there are people listening, um, who are parents or friends of a family member um, whose child is having autism mm-hmm, I think that would. Very helpful for them. Since this podcast is about, um, speaking common sense, what is the one piece of common sense that you would like our listeners to take away from?
Guest:
Oh, is to understand the root cause there is a cause of this and it's up to us as parents to explore what the causes might be, if it's environmental, if it's hereditary, if it has to do with the immune system. And just continuing to be, um, an active researcher to figure out what you can do, um, in your child's environment or with their diet or with any kind of, um, behavioral. Are are communicative support to help them. Um, and so some good groups are, for instance, Autism Speaks, uh, the Autism Society. And even more important that, um, a group that does an overwhelming amount of activism and research is called uh, Taca- the Autism Community and Action Network, and they provide really thick booklets on how to get started, and they have local chapters and local parents that are very active who will support you, and it's about taking your child's health in your own hands and being an advocate for your child. Right.
Host:
Well again, thank you so much for sharing your story and hopefully there are parents out there who know that they are not alone and there is a support system out there. And I think, um, this was really great, um, of you to spend some time with us. Thank you so much,
Guest:
Thank you so much you, and again, the most important thing for you to get started is to check out TACA. Uh, they are outstanding and they'll give you strength besides, um, having that relationship with God and, uh, creating your own support network of family and friends. So thank you so much for building awareness, Oh, you're welcome.
Host:
Thanks again. All right, then. This is the end of the,
