Podcast Episode 21. Not giving up, hanging in there – is the theme of this week’s podcast interview with Carmelina. She shares her journey with her son Dominic with us. Sometimes picking your battles is the key, as small things become your focus when you need to be looking at the bigger picture. We need to decide what will make the real differences, and fight those battles.
Carmelina offers insights on relationships. She encouraged sport as a means for Dominic to learn how to develop and maintain friendships. Carmelina explains sport has provided Dominic with a common passion and purpose, and this has enabled him to engage in conversations where he is an equal partner with his peers, who don’t necessarily have the same challenges as him. This common passion helps him because these differences are quickly forgotten in those moments where all that matters is being on the same team.
Having the chance to work has also been key to Dominic developing his independence skills. This sense of purpose has enabled him to develop transferable skills as well as start to understand the types of work he might like to do in the future. It also has meant he has begun to understand the complexities of earning and saving money.
Carmelina also talks about reaching out to other parents who may not necessarily be on the exact same path as you but at least understand some of the challenges you’re facing. This support and talking to others is something that can help anyone on what is often feels like a lonely journey and sometimes a scary space. Carmelina’s story reminds us that with perseverance we will get to the space where, like her, we can reflect on the independence skills our children have and where we can realistically imagine where their lives might go in a positive future focused way.
[3.15] – All about Carmelina and Dominic
[4.30] – The sporting journey begins at 5 and a half
[5.20] – The challenges of secondary school
[6.15] – The gap widens
[7.30] – Dealing with death in the family
[8.20] – Sport bridges the gap in communication and maintains friendships
[9.10] – The part time job building transferable skills
[11.05] – What the future might hold for Dominic
[12.30] – Coming out the end of the tunnel
[11.20] – Top tips from a parent
Pick your battles
Listen to yourself
Help them follow their passions
DEBRA: This week, I have the last of my interviews from my trip back home and after this listening to this interview, I realized that often as parents, we simply don’t see all the good things we have managed to achieve in helping our children become more independent and find their place in the world. So, this is really Carmelina’s story and as with most interviews, I spent some time chatting to her before I press the record button. And she was very certain she didn’t have much to say, not much worth sharing and generally, that I might be wasting my time talking to her.
But nothing could have been farther from the truth. Whether she realizes it or not, she has done a great job supporting and nurturing her son, Dominic, on his journey so far. We start off on her journey with Dominic with the diagnosis and then move through his school years talking about some of the challenges he faced. Importance of sport in Dominic’s life is a key theme, this is one theme I have found often repeated in my parent-podcast so far. It seems to me that sport, whether it be watching it or participating in it, is one way for everyone, regardless of their needs, to be together in a common purpose and a common passion. In Dominic’s case, it has provided him with the ability to engage in conversation where he is equal and he has a common ground with his peers. They don’t necessarily have the same challenges as him. In those conversations, differences are often forgotten because all that really matters is being part of the same team.
We also discussed what is an issue for many children as they grow up, have the gap between them and their peers becomes so much wider. The teenage years are a difficult time for anyone with all the raging hormones, but they are made more difficult for our children who see their peers doing things they cannot do or maybe we’re not comfortable with them doing.
Finally, Carmelina shares some of her tips including talking to other parents who are not necessarily on the same journey as you but have similar experiences. And she also advocates speaking your battles, not getting bug down with the small things that maybe don’t matter as much in the long run.
DEBRA: This week, we’re talking to Carmelina who has a son age 16 with additional needs. Welcome, Carmelina.
CARMELINA: Hello, Debra.
DEBRA: So, tell us a little bit about your story, your journey with your son?
CARMELINA: Dominic had very little speech until about the age of 2 and that’s when I began to explore and see what the delay and what it was caused by. So, we went to a speech therapist and we did a lot of therapy. He had a little bit of a colilo where he’d repeat constant themes or he keep wanting to watch a video again and again so we’re all thinking, it might not be something from the autism spectrum but he was too young to actually diagnose. So eventually, about the age of 3, we got him a cognitive assessment and that’s where he was said to be globally delayed but not specific. There were some traits of the autism spectrum that not everything so he was quite affectionate keen wasn’t a classic autism trait that you know as he wasn’t so shy or anything but he does things like be at playgroup or where he parallel play but not play with kids. So, there were already differences at that young age.
So, then we eventually worked with mainly speech in OT at the time, the occupational therapy with his fine motor. And then, we looked at getting him to school and all that sort of thing. So, he went into a mainstream school and it was excellent. They had a teachers’ aid support, he had a natural sort of skills in sport, and we started him off in a local soccer club at the age of 5 and a half. And he did really well in a team support. He did really well through the primary years. While he was on the autism spectrum, it wasn’t manifested too much in any kind of ritually stick things or anything. He would sit on the bench in team sports, he could wait his turn. Things were good in that way.
So, the cognitive assessments said he was globally delayed but as he got older, we needed funding especially for high school. He got re-assessed and it was a mild to moderate intellectual disability so that means that he got quite a bit of funding and I said he did excellent through mainstream school. He still got some of those friends. High school then became, “What do I want to do, do I keep him in mainstream?” and the local schools around didn’t have what we call a support unit which all the teachers were saying “It would be better for him to go in there” which is a smaller class sizes, they bring you the actual life skills called scenes. So, we decided to go with the support unit and that’s where he’s been. He’s in year 10 now. We went into high school and he was in the IM class which is a class for mild intellectual disabilities, he is now being put in the autism class in year 10. So, the autism has taken over into an anxiety sort of I don’t know if that’s part of the spectrum or if that’s part of him coping with feeling different and so on. So, I think, being in the IM class was difficult because it was a larger class and number of those students had more behavioral issues than sort of intellectual disability. And he picked up on all of those. So, going from mainstream, lovely role-modeling, didn’t see those behaviors there. His behaviors became more difficult.
DEBRA: Is he modeling the same behavior?
CARMELINA: Modeling the behaviors, you know, notice the swearing, the name-calling. He got a number of detentions. You know, as the teenage years then develop, they’re 14 and 15, they get widen suddenly between him having things they do as kids, they’re all similar even if you have a disability, you like to run and kick a ball, you like going to the movies. As they get old, they start getting invited to these parties. The gap widens as him being able to sort of connect with the kids that don’t have any disabilities because while he functions like his adaptive functioning, which it was really good. As in almost like a child without any issues. So, he independently travels. He has done it in year 7. The bus to school was nothing. It’s one bus. It’s not a school bus. It was a public bus.
DEBRA: Did you train him?
CARMELINA: I actually just once when I’m with him and another boy that I used to drive them to school and then one day, I did go on with them, just once, and then it was good.
DEBRA: He picked it up really quickly?
CARMELINA: He picked it up. So, things like that he’s excellent with. And then just recently, at the school carnival, he wanted to get the train there. They can go to school, get the bus so get their own with it. He’d never been on a train but anyway, I dropped him to the train station, should only be 1 or 2 stops to home. He rings me through the journey and says, “Oh, mum, this train’s going to Lipton” I have to get off there and then I’ve worked it out. In other words, the normal train on because it wasn’t a peak hour of the day, it wasn’t one streak route. He had to swap in a platform and he managed it himself and he got there. So, things like that, he’s good; with visual things, he’s great with on his finding and computering, very sociable. Somehow, they drop him to the bus drop in and there’s a bus on the other side of the road waiting, and I see him cross the road and he goes up to the driver and he ask “When is the next bus?” Yes, he’s friendly enough just to find out information.
Last year, we had the death of my stepfather and the one who greet him was my stepmother who’s lovely Irish, bubbly lady that just loved him to death and it was quite sudden. So, it was hard for him. He often says, “Mom, I’d be happier if granny was alive.”
DEBRA: How did you explain? Did he understand that they’re gone? Did you have to explain it to him?
CARMELINA: He asked lots of questions because he sort of says, “Where’s grandfather now? Is he sleeping? Is he eating?” So, he doesn’t get the whole thing that he knows they’re not coming back but doesn’t know. He now sorts of say things to me like “Oh mommy, gonna live with all the years” which before he used to say when was younger “You never gonna die mom” So I think he knows that death is there.
So, sports been a wonderful thing for him to where he sorted on a par with other kids out there. So, he has played cricket, he’s played soccer, he’s played touch football. His ability in sports allowed him to be normal but with the mainstream kids and that’s why he plays local soccer still like a team his on. So, we took the positives out of the sport.
DEBRA: Friendship wise, do you think that, it that’s good for his developing friendship skills?
CARMELINA: I think it’s excellent for that. Yes, I do agree with that because often I noticed that he doesn’t have much to say when he’s talking with the kids on the phone or that he doesn’t sort of know how to keep the conversations going but sports been bridging that. He will ring a couple of the boys if they’re going to training or not. It’s made a bonding. It has allowed him to probably to feel on a par with them and not different because he does hates that. You know, in school work like some of the teachers were giving him sheets to come home, it might have been in year 4 or year 3 math sheets, and he gets so upset with the teacher “I’m not in year 4. I don’t need to do” but he’d never wanted to be different. So being in sport and being able to keep penalties and take corners like all the other boys I think has been good.
DEBRA: You tell me a little bit about his works?
CARMELINA: So, he works in an Italian restaurant. We actually just had a party there
and then we kept going as a local restaurant and got on with the owner. One day, when the evening we’ve been there for half an hour and we didn’t see him. All of a sudden, he came down the stairs because the pizza kitchen upstairs full of flowers and stuff, he asked the owner if he could give him a hand and they said “Yes”. So, he was in there helping caught up things for pizza so that’s how he got the job. They said “Look, he’s really good, we’ll take him on.” So, he does that every week on a Friday night.
It’s been really good for him because he is able to follow instructions and he feels like he’s part of it but it’s good to know those skills. And he’s great at home. It has manifested into wanting to do things at home; made his own breakfast like eggs and bacon and he can chop up his salad. So those skills have helped him, I think. He can certainly get on in life in that way. The main thing I worry about is the money side.
DEBRA: I have to ask you; what does he do with the money that he earns from the restaurant?
CARMELINA: So, it gets directly deposited to his account so he’s got his own bank account with a key-card and so on. So, we’re just saving. He’s 16 and still can’t get his excel which is the license, I think it’s going to take him a while to get them, so we’re saving towards the car, that’s what he’s wanting to do with it.
DEBRA: So, he doesn’t take it down and spend it on silly things?
CARMELINA: Look, I generally give him a little bit of money for that because he does choose it hardly that qualms and he loves that qualms that was an obsession as a child. There was a point where I had about four back in my hand. He is wind off that but he still loves to do that task. He can look on his account anytime he likes to see it building in.
DEBRA: You’d like him to get his license so he can drive himself around?
CARMELINA: I think I would like and I don’t know. The last year he had a lot of anxiety and a bit of anger there and all that so I certainly would want him to be sorted in that way and so he’s wanting to go on to your eleven and twelve which before he wasn’t. So, the fact that he’s happier in school, the medication as well, he needed something for his anxiety and that seems to be kicking in well.
DEBRA: Long-term jobs?
CARMELINA: He goes from one to another. He likes everything, so he likes bricking one minute then he not. My husband is in the construction area so Dominic would see various parts of the building and he’s very interested in that construction site. I think that’s where he’s skids really. There’s also hospitality. I’m really hoping that he can go to something like that, something that he’s happy with.
DEBRA: Forwards, let’s say 5 years, where would you like him to be?
CARMELINA: I’d like him to be, obviously, we want our kids to be happy and well-adjusted. I’d like him to be probably training for some things or in a job where he is able to stand his own ground. Maybe not a girlfriend yet, but a friend, a few friends that they socialize that continues because he does like go to movies, lunches. He’s capable of that. It’s just, I suppose you only need 1 or 2 friends but yes, the friendships, the valid friendships that’s all.
I worry about that future like you said the 5 years, the 10 years. Hopefully, he’s found his place so he can continue on because he has no siblings and I do have a sister with kids but you know, that’s different. That worries me with what’s going to happen to him when I’m not around. That sort of things. So, I’m hoping we got things in place and then he’s able to work. I know the other sides independent with him like he can go into a shop and he buys things, sort of works out the money but not exactly but they’re really focused on that. Where he’s at school, every day they do money with real money and change and that’s a big thing. They want to go and buy things we don’t know and they can be taken advantage of. It’s been a difficult journey but yes, I think we’re coming at the right end. There’s still a lot of hormones in it, I think a lot of it is to do with him being comfortable with himself and being happier.
DEBRA: You think it’s been your perseverance?
CARMELINA: I think so. There was quite tough few times and said “I just don’t know what’s going to happen to this”. He just wasn’t coping and we had to try that 5 different combinations of medications. He’s only been on medications under 12 months. He was on ADHD since a young kid but we stopped that when he was 6 because he wasn’t really doing much but now these are different needs set and so until we got it right. So, it was very hard, so I think perseverance is a great word because I think I nearly, not gave up, but thought there’s no answers. And who’s going to solve, I got used to solving a problem and these are the things sometimes that you get, you just have to hang in. Talk to people. Talk to parents that have similar although may be different situations but sometimes the way you take part is similar. You get your professionals involved. Is there a youth group or something for kids in their teens…
DEBRA: I was going to ask, what would be your tips to other parents then?
CARMELINA: I suppose picking your battles as well like sometimes it’s just too many obstacles and you get bogged down with the little things; slowing it down, talking it through and just sort of pacing, listening to yourself what feels right. Throwing them into the fist drinks which I’ve done with sport. Don’t stop at the disappointments I suppose. Just keep pushing through. If other parents have kids that you know like to run around, do sport, get them in a team sport. It teaches them a lot. That’s probably the tips I’d say, just sort of work with the strengths, try and not worry too much about all the little obstacles and just pick the ones that are really important that you want to get in through.
DEBRA: Carmelina, thank you very much for your time.
CARMELINA: Thank you so much, Debra. Thank you, I enjoyed it.
DEBRA: Key takeaways. Hang in there. Perseverance, determination, whatever word you want to use. That seems to be the common theme here. Picking your battles, not getting bogged down by the little things. Listening to yourself, trusting your own judgment. Not always easy. I can say that from my own experiences. And if your child has a skill or a passion, help them follow it. In Dominic’s case, it was sport and it has given him a community and a connection which is what we want for all our children.
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