Parenting A Child With A Disability

Podcast Notes

Asalamualaikum Peace be with you. You are listening to Cup of Parenting Podcast, and I'm your host Aisha, a paediatric speech and language therapist, mom of seven and parenting coach here in the uk.

This week we are talking about experiences of disability. In particular, we're talking to families who may have a child with a disability and how that impacts on them and their family life. Now, in case you didn't know, 8% of children are actually categorized as having a disability here in the uk according to the government's family resources survey from 2020.

So with me today, I have Rozita. Rozita is a mom of four, two boys and two girls. Masha'allah and her third child, Azhad has a diagnosis of cerebral palsy. Rozita, welcome to the show.

Thank you very much for inviting me, .

Thank you for being here. So Rozita if you could just start by taking you back to sort of, I guess, before your son was born, were you aware that you were going to have a child, you know, with cerebral palsy?

At what point did you find out.

Yeah, definitely. We don't know anything about his diagnosis. I have two child, my first and second, they are born normal and when my third came in and he was born normal. I have no complication during pregnancy. There's nothing indication that I would be having disabled child.

So the birth was normal. Everything was normal. I haven't got any, any sickness, what whatsoever during pregnancy, everything was normal and during birth was normal. And he sort of during the birth for the first four months, three months, I can say he's, he's a healthy boy and we went for checkup, and there's nothing unusual about, about him.

He love, he lives just as normal as any other children. But then his milestone is not as normal. He did not like go into the normal, like crawling and things like that, like the, any other children. So by by the time of six months, seven months, I became worried. Why hasn't he has not been like, he can't see, he can crawl. He can't do things that normal babies do. And but other than that, he's his, his smile, he can, I mean, baby talk, everything else is normal apart from, from that milestone. So I was worried, and I think it's time for me to, well inquire what is wrong with him, and that is when I, I was like, told my son has cerebral palsy, diagnosed with cerebral palsy. That is when he was like seven months.

Okay. So that's, so that, that's really interesting to know. So, because sometimes depending on the disability, they might pick it up in a scan and they might tell the families obviously. Yeah. And at that point they have to make a decision.

Whereas with you, you didn't find out till, and as you said, he had all his normal developmental milestones. He didn't find out till he was about seven months. Yeah. So in terms of getting the diagnosis itself, Rozita how easy was that? Did you go to the gp? Was it the health visitor you spoke to?

Yeah, because this happened like back in Malaysia.

Oh, okay.

Yeah. Back in Malaysia. So when he was seven months old, when he was diagnosed, I was lost. I can't even, I can't even like say cerebral palsy. I have to ask the doctor. Okay. Can you like Jot down or spell it out for me so that I can, I know what it is and I dunno, what is cerebral palsy in the first place.

And over, back in Malaysia, we have no support system at all. And I was lost. I dunno where to go, where, what to do, what's next to do? What treatment should I take? I'm lost. I'm totally lost. And I was just told to, to go to some like pediatrician that specialized pediatricians neuro specialists.

And they, they asked me to sort of like register with the welfare department. But other than that, there isn't any support for, for us back in Malaysia. So we sort of like find our own resource. Where to go after. and we just like find what actually is available. But sadly, in Malaysia there isn't any much that is available.

Mm-hmm. . So, yeah. That for the first, like first year of his life in Malaysia, we haven't got any support. Yeah.

Okay. And for any of our listeners who aren't familiar, Rozita with the diagnosis of cerebral palsy, can you just tell us a little bit about what does that mean for the child? What is it that you know he might not be able to do compared to say, a typically developing child?

Yeah. I mean cerebral Palsy is like, is a depletion of oxygen. It can cause by anything accident or during childbirth and anything that can cause oxygen depletion towards the child during pregnancy. But in my case, after that, when he was diagnosed, I make all the tests that can relate of his disability. Where is, is it genes, is it inheritance or is it whatever test that we can find? It's all normal until we sort of like insist to get MRI for him. And that's where we found out that even that in Malaysia, they, they say there's nothing wrong with the, with the brain until we came here. With the report and with the, the images that the people over here found that there's some white matter in his brain that is not quite developed.

Okay. So that was in the, when you say here, you mean in the uk You came uk. Okay. Yeah. So, Because of that. Now, what is it that he, so what other challenges that you're presented with on a day-to-day basis, Rozita?

Because your son, he uses a wheelchair as well. Yeah. So there's some physical sort of challenges that you have.

I mean, yeah, from the day that he's been diagnosed, he, he can't walk since then. So, I mean, when he's, he is, Small toddler. I can like carry him, there's no problem.

But, but now it's a bit too hard for me.

How old is he now? Rozita.

He's, he's 19 now. So from, from the beginning, he can't walk. So he's on wheelchair and everything, but as, as time goes, he can like, feed himself mm-hmm. . But other than that, he's, he's sort of like, he needs someone to be around him 24 hours.

Yeah. So it, it's, it's it's really like, it's hard work. Yes. It's really hard. Because like before I moved to the current house, I'm living now. Okay. We haven't got any adaptation to the house previously. We, we lived, so it's all like, I have to carry him from bed to the chair to the toilet and it's really hard work until he was like, just like, Three years back when we moved here.

So in terms of his caring, are you, are you his main caregiver, Rozita?

Yes, I am. Yeah.

Okay. And you've just mentioned that you would need the house to be adapted, which is obviously quite, quite a big thing that needs to be done. Yeah. Another thing that I wanted to pick up on was, I didn't know this until I did a bit of research that typically about £583 a month extra is required typically for people who have a child with a disability in terms of extra expenses on top of everything else. Yes. And statistically this can go all the way up to a thousand pound. Now, this is not even something that I thought of. Did you find that you had to spend extra in terms of financial resources, Rozita, to adapt for your son's needs?

Yeah, definitely. Because he needs like special equipment. Special equipment's are not cheap. Yeah. They're all expensive and we can't like buy them then, so we have to sort of like top up every now and then to get like one special equipment for him. Sometimes we do get fundings. But other than that, yeah, we have to, we sometimes we need some extra physio, things like that.

I mean, although that he has had that in school, but we always like need some extra bits for, for him. Yeah. Yeah. It's always like, yeah. Financially it's really, really tight. Yeah.

So in terms of the support system, I know you mentioned when you were back home in Malaysia. Yeah. There wasn't really that much in terms of what you knew and support that you could easily go to. So now, at the moment you are living in the UK and you've, you been here for a while, what is the support system like here? Is it better? Is it, can it still be improved? Do you have access to special services that you can use for him? .

Yeah. Yeah. I mean, comparing to Malaysia Malaysia has, like, I, I probably still like 20 years back. As what we have here in, in uk, which I'm very grateful of. First of all it is education. So when I came here I further my study and, and I, I found out that I can't find, find it in Malaysia. Mm-hmm. Malaysia, they only have sort of like care, sort of like care centre. Not education, but over here in whatever state your child is, education is first and they will, they will make you like the child in whatever means if they can't talk they have devices. If they can't use hand, they can use eyes, whatever things that they can use so that the child could have education. Yes. So that is the first thing that, that, the service that, I mean, the opportunity that we get here, that is very, very beneficial for my son, and that is on education and also on they have a very like conducive like system that help from the beginning and education, health, and also like a social service. So they're all like, Three in one. So it's a really, like, really helpful.

Yeah, that's good. So you get like a, a whole package of support from different areas. Yes. And as you just mentioned that in terms of the schools as the most important thing for any human is to be able to communicate and that's something that the schools emphasize on in here. So how long does he stay in the school system for Rozita? Is it the same age as any other child? Is it a specialist school? How do you transport him to the school? Do you take him yourself? .

The school that my son goes is, is an independent school. So it's not a mainstream and it's not like specialist school supported by government, but it's an independent school, but it's been funded by the council. So as he has been in that school since he was four years until just recently . That's so it's like almost 15 years.

Yeah, 15 years. So he's been in that school since he was four years old and he was quite emotional because he's been there all his life. Hmm. And I, I can't, I can't thank enough the school for giving the support, the commitment, the stuff are so like, Dedicated with the things that they're doing. So I'm, I'm really, I, I can't say.

Oh, that's amazing. Yeah. , it's amazing to know that these people have had, obviously such a profound impact on you and your family. Yeah. To support him. That's amazing to know that there's people out there who are supporting these children, who obviously clearly need. As a society. Yeah. That's really amazing.

Yeah. The other thing I wanted to ask you is yourself personally, Rozita is obviously been quite a long journey for you. How do you feel it's impacted on you and your family? Do you feel like you've had to make some pretty major changes? How has that been for you?

when, when we know that we have a special need child the only thing we want we have in mind is to move forward, to give him best, best thing that we could ever. Find. Yeah. So that's why we decided to sort of like to stay here and we thought that he could get the best of his life over here. And we want him to be included in the community. We want him to be as normal, although we know that he's, he can't be normal, but we try to, to make him feel because he's just as normal children, he has feeling, he has things that he wants. The only thing that he's, he's, he's disabled. He can't walk. But other than that, he's just like any other normal children, of course. So we want, we want him to, to get the best of his life, to have friends, to have, to have things that he wants to do.

And for us, although it's hard work, although it is, we feel. Intimidating fear is exhaustion. But at the end of the day, the exhaustion, the, the tightness is all with if, if you can make him happy.

Yes. Yeah, absolutely. And that's an absolutely amazing and incredible job that you're doing. It's hard enough, you know, being a mom to children who don't have a disability, and you're all eyes on your feet and it's all always never ending, isn't it? The, the tiredness and the Yeah

yeah. I mean, he, he's just, Like, like what to say? A baby. Yeah. I mean, I can say that because he, he can't, manage by himself. He can't go to the toilet by himself. Everything, personal care dressing up everything, we, we got to do it for him. Yeah. So the only fear that I have now is just if I die, who's going to take care of him? Yeah. That's the only fear that I have.

Because ultimately you are his mom and you know, you've been doing it the way a mom does care for a child, which Yeah .

I, I just feel that, of course, any mother will say that. Of course. Uh, The mother will, will do best, I mean, the best that any other people can do right. I mean, although we have the service, we have the carers that I have carers at a minute come over to my house. Yeah. Like every morning and every evening, we still feel. We can do better than that. Something like that. Yeah.

Oh, that's just typical of moms, isn't it? Yeah. Yeah. We want to do more above and beyond.

The other thing I wanted to pick up on Rozita was that, I know I see you in the mosque quite a lot and I know you go out and about and how family days out. How easy is it for you? Taking him where you want to go in terms of access arrangements. And do you, do you ever face any prejudice or have any difficulty getting out and about?

We do have some difficulties in accessibility. Like if we, we go holidays especially, it's hard for us to find accommodation with accessibility. So if there is there it's a bit expensive so it's always, the money will be more than the normal one.

Oh, okay. So you have to actually spend extra to Yes.

It's always you need to, find extra. If I were to go to hotel, I will need to find disability room that has a, like a wet room at the same time, and we have to bring all his equipment, like a toilet seat and things like that. So yeah, and, and also if you were to go any places that is around, around the area, we need to know beforehand that if the, the place is as accessible or not.

And the other thing is like, I, I. Me as a mother, I want him to be, to be part of the community and also like, not just like the community that we have here, but also like my small community, like the Malaysian community. Yes. So we have sort of like gathering, usually we have gatherings. Sometimes people invite us to the house, but it's always not possible for, for my son and and me because it's not accessible.

So he's always been left. He's always been left out, but sometimes to this extent I want him to be part of that community. So we have to work a bit harder. Sometimes we have to go like up the stairs, we have to carry him and things like that. So yeah. But now it's just impossible. He's just too big for us to carry him.

Yeah. So if, if that's the case, so he'll be left out. Oh, so yeah, and I'm, I'm so relieved that we have the new mosque and I always, whenever that we have meeting with the contractors, the first thing I'll ask is, if the mosque will have lift or not? So they say, yes, yes, they'll have lift.

So I was so relieved because, or else you'll be left out again. Because at the moment, like the mosque that we have now, yeah. Uh, He, he's, it's accessible, but some, sometimes if too many people, it's quite hard for, for him to be with.

Yeah. So I think as a society in general, we should be probably doing a lot more and thinking about these things when we invite families and sort of thinking about how we can be more inclusive of children who might not be able to easily access whatever event it is, isn't it from what you're saying, which is something which is definitely worth exploring further and thinking about. Yes, definitely. What advice would you then give Rozita if there's any mom out there listening or any families listening who are maybe not as advanced age as you are because your son's, you know entering adulthood now maybe they've got as younger child or a small baby, or they have children in their family who do have a disability. Yeah. And it might not be the same as what your son has, but what advice would you give to that mom or that family?

I will say that just live life as it is make, I mean, we want not just make our child happy, we want us to be happy as well. Not to be frustrated, not to be mourn with the testing that Allah has given us.

We, we just move, move forward. Get things moving and get all the opportunity that we have, make our life better, and just be happy and enjoy life.

absolutely. And you are SubhanAllah you're such a smiley person. I don't think I've ever seen you without a smile on your face. And I, and I pray God always keeps a smile on your face, and blesses you and your whole family and your son especially as well.

And thank you so much for agreeing to come onto the show today. It's been absolutely fantastic and I have learned so much myself. I'm sure other people out there will have learned valuable lessons from listening to you, Rozita Jazakallah to everyone for listening. Thank you very much.

Asalamualaikum warahmatullahi wabarakatuhu