Episode 19 - Living with Autism
Aug 18, 2021
"Sometimes when people talk to carers, they are always so sad about the situation which doesn't always make us as carers feel good. " - Eleshia Harris
Autism is a complex range of conditions that are characterised by challenges with social skills, repetitive behaviours, speech, and nonverbal communication.
Affecting the person for life and differing from person to person, it can affect the way they live their lives and interact with the world.
If you’re living with a person on the autism spectrum, you’ll need to have a great deal of patience, understanding, attention and love so you can help provide them with the support they need to thrive.
Although our society is starting to open up and talk more about autism, there is still a certain degree of stigma attached. That’s why we need to communicate more openly about what it means to live with the condition and what it means to care for someone with autism.
In this week’s episode, Eleshia shares her journey as a carer, sister, and mum to her younger brother Jordan who has autism and tells us how she learned to handle fear, develop responsibility and patience and use love to conquer all.
Listen to the episode, get inspired and have a more profound insight as to how it feels to live with autism with gratefulness and appreciation.
It’s also a great episode to start with if you intend to parent mindfully because we can change the world for those with autism. We can teach our children the importance of treating others as equals, regardless of race, gender, economic status, education, sexual orientation and especially differing abilities.
Eleshia’s Essentials:
- I want to make sure that everybody is seen and heard and listened to in our household.
- Sometimes when people talk to carers, they are always so sad about the situation which doesn't always make us, as carers, feel good because we do it from a place of love.
- Being a carer to my brother with autism, my level of understanding and labelling just really changed.
Other resources mentioned:
Connect with Eleshia:
About the show:
The Eleshia Show is an exciting new podcast that helps empower female business owners to put their wellbeing first whilst building their businesses. Tune in every Wednesday as my inspiring guests and I discuss strategies, share stories and experiences and dive into how you can build your business whilst trying to navigate real life. The host, Eleshia Harris is here and ready to share her decades of project management and wellness experience to help you start saying ‘Yes!’ to your business and life.
Show Transcript:
I always find it really interesting when people asked me about Jordan's autism because to me, I see him as Jordan. I never really define him by his autism.
Eleshia Harris: Hi, I'm Eleshia Harris and I am your host of The Eleshia Show. I am also the founder of eleshialifestyle.com, and I'm so excited that you're here with me and I am here with you. I'm also really appreciative. Each week, I'll be sharing strategies and stories, and insights to help you enhance your wellbeing and to build your business while still navigating life. Because sometimes we often try and separate the two and let's face it, if you are not well, you have no business. So let's try and work with these two things combined because we can enhance your lifestyle. Again, I'm really excited to have you here. I have wanted to put together a podcast for over two years, and so here I am ready to share. Let's get into this week's episode.
Hi, so I'm back for a solo. And I really felt like I had to have this conversation with you guys with regards to being the main carer to my brother who is on the autism spectrum. The reason why I think this is really an important conversation to have is because I know there are many of us, female business owners that are trying to build their businesses and looking after their families.
And some of them are also having to look after children with additional needs. So, from my perspective, I just want to have an open conversation about how I feel being a carer of somebody who has additional needs also. So a lot of times I get from friends and family: Oh my gosh, Eleshia, I don't know how you do it. And I get questions asked of me as to whether I will always have to care for Jordan, and the short answer is that he's my brother. So regardless if he needs help or not, I am always going to be there for him. I wanted to give you a bit of an insight as to how it is living with autism.
So firstly, when I googled “what is autism” and this is the definition that came up. Autism is a complex lifelong developmental disability that typically appears during early childhood and can impact a person's social skills, communication, relationships, and self-regulation. Autism is defined by a certain set of behaviors and is a spectrum condition that affects people differently and to varying degrees. Now, when I read that, I was more intrigued to know what somebody who read that, not living with anybody who is on the autism spectrum would take from that. Because over the years I have heard so many different stories of stereotypes as to how autism people act and seen. Many questions on, where is Jordan on the spectrum?
What are his disabilities? What can he do and what can't he do? I'm reading a really great book at the moment, called Tender by Penny Wincer, and it's all about the imperfect art of caring. It just goes through different stories and different perspectives of different carer's journeys to caring for people with other needs. It just made me really think about the way I respond going forward. I always find it really interesting when people ask me about Jordan's autism because to me, I see him as Jordan. I never really define him by his autism. Yes, I know that he has difficulties with some aspects of his life but for me, he's my baby brother. He always has been. And I don't always know how to respond to the questions being asked because of the fact that this is who he is. Jordan's disabilities show up differently depending on the day, and what we're going through. So the simple answer for me is that I know that Jordan's brain is wired differently. The things that I will find really easy to comprehend, sometimes it will take him a little bit more time to get to the same result.
I knew at some point in my life that I would have to step in and give my mom additional help with regards to taking care of Jordan more. Did I think it was going to be because my mom died at an early age? Absolutely not, but I also knew that my mom's last days were nearing and that I needed to make a promise to her that I would always look out for him, for her to rest easy.
That was really difficult for me, not because I didn't want to take the responsibility but it was difficult because I was letting my mom go. She knew I was alright, she knew I was going to be alright. But I knew she's worried about her boys, so there's not a known cure for autism. And autism is definitely different from person to person. Jordan functions well on good days with his autism, and me and Davin and one of our really good friends provide extra support to Jordan as when he needs it. And that is really helpful that I'm not on my own doing this because he is getting into an age where he's older. He's older so sometimes, there is that power struggle. It's difficult as I've said before because I'm his sister but I'm also his carer. I'm also there to ensure that he is safe. And particularly in the last 18 months when we have had to change his routines because he likes routines. Autism people like routines, and when we had to change his routines due to COVID and him not always understanding that he can't do what he wants to do, or that people around him don't necessarily know that he's on the spectrum.
At first look, you won't know, but if you were to observe him for a little while longer, you may pick up that he is on the spectrum. But on first glance, he's a tall black man and some people still find that really frightening. So with everything that's been going on in the world, I've had to be even more protective when the lockdown was lifted, ensuring that he knows not to be in people's personal spaces or he's making sure that he's really focused when he is outside. He knows that he needs to make sure that he has put his safety first when he goes outside, and I still worry.
I always worry. As soon as he leaves to when he gets back, I worry. But at the same time, I know that I have to give him some level of independence because I'm not going to be here forever. So when my mom was trying to explain to us that Jordan had autism, she sat us all down and she made us watch Rain Man. I don't know if you've seen this movie, but if you haven't, it's a beautiful movie with Tom Cruise and Dustin Hoffman. He tried to explain to us that Jordan was going to have some tendencies of the same as Dustin's character. At that stage, I think I was 16 or 17 so I did my own research, but I also realized that Jordan was going to be different. And different to me was okay, why would you want to be the same? Over the years, just seeing him grow up and blossom into this kind, loving, and soft man has been amazing. Now, don't get me wrong. He can also be stubborn and irritating and very challenging, and all of the other things too that teenagers or just us as human beings can be. But my level of understanding just really changed and labeling also really changed. I didn't want to label, I didn't want to put Jordan in the box. Jordan is amazing. He's intelligent, when pushed he's also quite lazy when he wants to be. But he has done an apprenticeship for one of the leading hotels in the world. He also works as a kitchen assistant for a special needs school, and he had the most amazing boss and the team around him who really pushed him to do a university qualification in catering. He's adapted really well to losing mom, and I think some of that is down to the fact that he doesn't always know how to show his emotions.
And I mean, that was a really difficult situation in itself because I was trying to hold my emotions together for him, but equally, he didn't know how to show his emotions, so it would come out in different ways. He would be really angry at times and we didn't know why, but we did know why if that makes sense. So that was difficult, but he never cries unless he's really, really, really sad. He was the one who read my mom's eulogy at her funeral because we couldn't. He got a standing ovation for it because he was so clear and articulate and so brave and just so amazing when everybody around him was falling apart.
The guy is smart but he is often misunderstood. I stick up for him a lot because one, he's my baby brother, but two, because I know how it can be not to be seen or heard or understood. So I do stick up for him a lot, but sometimes, and actually a lot of the times Jordan's playing me too. I laugh now. but it does sometimes cause conflicts in our household. I am really thankful for the fact that Davin has known Jordan since he was three years old, so he's also grown up with Jordan but he also knows and can see when Jordan's playing on my emotions, and that is really helpful from a perspective of me just trying to set boundaries as well. But it can be challenging sometimes, and it's not always easy especially as we have our daughter now as well. I want to make sure that everybody is seen and heard and listened to in our household.
It's really important to me not to always be in conflict. So having the conversation with Marisa in episode 18 was really important to me just to get some more strategies as to how to really go about having mindful conversations as a family, rather than the, you do what I say conversations that sometimes we all go to as our first point of call. I guess I just want you to get this off of my chest. I don't feel like I'm in a situation where it's poor me. Yes, sometimes I feel like it could be easier. Yes, sometimes I feel like there could be more level of support around me with regards to family members. But that's a whole different story.
I want to be there for my brother. I want to ensure that he knows that he is loved and cared for and well looked after, and I will do that as much as I can around building my brand, around being a wife, around being a mother. All of those things are really important to me, and so is he. I always say that Jordan was my first baby because he came when I was 14 and I had a big hand in helping my mom look after him. I know she was grateful for that, but I also know that he needs his own level of independence. And I am trying to give him that as much as I can, as much as the world will allow me to. So yes, that was, as I said, it was just really important for me to get that off my chest because I just think sometimes when people talk to carers, they are always so sad about the situation which doesn't always make us as carers feel good because I know from my perspective, I do it from a place of love. It always is from a place of love and family that means a lot to me.
I really hope that this conversation made sense. It's been one that's been inside my head for a little while. I just wanted to express my journey as a carer, as a sister-mom that it's not easy at times. It's the life that I live and I'm grateful that I am here for him, and he is here for me. I'll see you next week.
Thank you so much for listening to this week's episode of The Eleshia Show. If you know somebody who needs to hear the conversations that we are having, please share it, take a screenshot and send it to them. Also, I would really love for you to rate and review the podcast as this really helps, and I'd love to read your comments. Lastly, remember, you need to invest in yourself first because you are important and amazing. Take care until the next time. Bye-bye.
