Can you choose a fruit that best represents the way you’re feeling today? Can you tell me about your story as a mother and your pregnancy? Can you tell me when you noticed something was different about your autistic child? When did you start noticing you were depressed? When you went to the doctor what did they say was different about your child? What type of tests did they do? What makes you anxious about being a mother of an autistic child? Do you look after him by yourself and how do you manage on a daily basis? How do you manage your anxiety whilst looking after an autistic child full-time? What tips do you give to parents with disabled children? Is there a good care system in the UK? Do you prefer blue or brown?
It’s okay. No problem. How are you?
Yeah, I’m good. How about you?
Yeah, not too bad. I’m a bit tired because yesterday I wanted to sleep late and I was preparing for today. So… and also I had another recording this morning. So a little bit busy. Yeah. Have you seen the fog?
Yeah as I talk with you now it’s amazingly thick.
Yeah. Can you speak close to the…. I don’t know what you’re using… Is it a computer or phone?
I’m using the iPhone.
Ah yeah, can you put it just near your… maybe near your mouth? That might be better.
Yeah, is that clearer
Just so that we can hear you properly. Yeah, so you were saying? Have you seen the… Did you go out?
No, I haven’t because it was rainy actually, I decided to do the house walk instead. But tomorrow will be different.
How are you feeling?
Yeah, maybe a bit tired because I didn’t sleep very well last night, my son was up all night playing games. Yeah, he just wants to play some times. Gets up and he wants me to come in with him and yeah, what can you do… you just do it don’t you.
So yeah…. go on go on
He doesn’t understand. But you know, you cannot do your best to please them, don’t you?
Yeah, of course. Of course, especially right now when it’s so hard for everyone because of the pandemic.
So, we are going to talk about anxiety and the joy of caring for an autistic child today. Before we start, can you please choose a fruit that represents the way you feel and tell us why you have chosen this fruit?
I chose avocado. Because initially avocado is hard to begin with but then you put in a brown paper, the substance with time and it’s so nutritious after that. And it’s just so delicious. You know something that was quite unpalatable to begin with. So yeah.
Can you hear me?
Yeah I can
Ah okay, I think. Yeah, I was saying so. If sometimes I put my microphone on mute is just because I don’t want any noise to come from me. And I would like people to I mean, you know, to listen, to have a clear. How can I say? To have your audio very clear. So don’t worry if I put my cell phone on mute it’s just, I’m listening very carefully. So don’t worry. It’s all I wanted to say before we start. So tell me a little bit more about your story as a mother. How did you feel during the pregnancy? And then when did you start noticing that something was different about your autistic child?
My childhood? Did you want me to talk about my childhood?
Just about when you were pregnant… Or, you can talk about your childhood also, no problem.
Yeah, basically, before my pregnancy, I was… I had lots of freedom. I could do anything I wanted to do. But then I was pregnant and I had a very terrible pregnancy, I was on my own, some of the time my husband went off to Portugal. Basically, after my child arrived… in fact, my child saved my life. I felt really quite depressed during that time. But just hearing my baby kicked, you know, revived me to just be there, you know, as I felt quite suicidal. So, my husband was away… I was all by myself, didn’t have anyone to particularly talk with me or care for me, but then my baby kept me going. But after my son was born, I just really, so happy to be a mum and of course, Edward, my son is autistic, but he’s the third baby. But during my pregnancy, everything was fine. But when he got diagnosed, I was really depressed really…
This is very interesting and in terms of your depression, when did you start noticing that you were depressed?
That was before my first child……So see what it was when I came over to England. I didn’t really have anyone here. So the depression just kicked in, because living in a foreign country, for me was like a fish out of water. So I got really depressed, to the point of feeling quite suicidal. So it was my babies. My first son, ? was the thing that really saved my life. Just that ? really made me want to leave just for that baby, you know. But after he arrived, I just just just wanted to be here, really? Because as a child, I didn’t have a mum. No father. So all I wanted to be now was to care for my baby. So that gets me really strong… yeah.
So your children are really your life force?
Yeah, indeed. They’re everything to me.
So in terms of your autistic child, when did you start noticing that something was different?
Because, Edward is the third child, we started to notice from age about 11 months or so. Because he wasn’t particularly trying to make eye contact or talking, like my two previous children, because by age, one year, they were already saying Mama, you know, saying something making eye contact, etc. But Edward was just so different. So it was about 11 months in that we notice something isn’t right.
And did you go to the to your GP to find out what was… what was different about him?
Yeah, didn’t go to the GP until he was about two and a half. Then we were given… we’re allowed to go home and maybe and he sent us to a specialist, which we went when he was about three. And then he got diagnosed within, you know, quite quickly, so, yeah.
And what type of tests did they do? Do you remember? It might be a long time ago, but…
Oh, yeah, remember, they did some sort of, you know, to check his behaviour, attitudes, how he talks, how he responds and eye contact. You know, and of course, he was also on his tiptoes. And he was… there was another telltale signs of autism, which is when a child rocks back and forth repeatedly. So that was one of the signs that the man, you know, whoever was in charge discovered. So yeah, and he noted everything then and then we went home, we had to wait and then something came in the post and they said he was autistic. So that was really very hard for us.
What type of other signs… you noticed that look like…. I mean, that that looked like autism. You’re talking about rock chairing, and what else?
Yeah, there were other things like he would lay his toys in one line. You know, like cars, he would put them in one line. And he wouldn’t make eye contact, eye contact was the most biggest issue for me. You know, when you hold your child, you try to communicate, they wouldn’t look at you. And he would just rather play by himself. I wantrf to play with him and in those days, he used to go to nursery. They also noticed that sign as well. So that was one of the biggest signs of autism, when a child layers the toys in one particular order. Number one, they don’t make eye contact, but two and he rocks back and forth and one of the signs that he was like hopping on his tippy toe all the time. Yeah, these are the four main things that we noticed.
And what makes you anxious as a mother of an autistic child?
….. Edward has no concept of danger. He, he has to be looked after 24/7. He’s, he has no speech. Not a slightest, he is completely mute and he’s still on pad, basically, he would actually do it. So you have to sit him in the loo quite frequently hoping that something comes out. Or it goes in his time but because he’s on pad, so so we prevent this happening. So that’s the main danger and when he’s sick, he won’t let you know what’s happening. You just have to figure that out. Yeah.
And do you look after him on your own? Or do you have people who help you? How do you manage on a daily basis?
I look after him on my own 24/7. My husband does play a lovely part as well, but he has to work full time. So my main job is to stay at home to look after the kids, I had a job but because of my job it got quite bad so I couldn’t keep up my job. So yeah, I’m a sole carer.
And how do you manage your anxiety? What do you do to lessen the anxiety of caring for a child with autism full time?
I have my magic cure that’s what I call it, my magic cure. I go to the woodlands quite a lot. I take Edward with me lots of the time, especially at the weekends. The woodland is just a miraculous place for me to be without it, I dont know where I would be now, my head would just be running around like a headless chicken if you like. Yeah. So yeah, woodland for me or anywhere where there is less noise. Maybe the sea as well is a good place as well.
And what type of… what type of tips would you give to parents with disabled children?
Yeah, my tip is to kind of set a balance, where a parent can have a me time without the child, or the children, you need time alone, maybe get a nibble or maybe a friend. Or if you don’t have anybody around you, maybe early in the morning, when the kids are sitting there, just maybe take a quick walk around the block, you know, even if it’s just five minutes, that works magic. Yeah. And also, try not to blame yourself, you know, like, might have been your fault or if you could have done something better to prevent what’s happening. Because I know I, I say that to myself. I don’t blame myself. Once you stop this attitude, then you will be fine.
Do you think that you have a good level of care here in the UK or things could have been done differently? Because I hear that you are on your own. looking after your child, so are there any help you can… you can have in terms of having an assistant or maybe a nurse or a carer that will come to visit you on a daily basis or cleaner perhaps
You see…. believe you me I had help in the past but I will advise against this to other parents. I was offered a rest from Edwards and I refused, when I tried it once, but then I felt really bad. But you know me, I wanted to be like to have him by my side or at all times. I have my family, my husband to take him off me at times. So no, I’m okay. But I would advise any parents out there to accept any help. I don’t want anyone to be like me. Yeah, because I don’t do anything else. I don’t. This is my only job to look after my kids. So yeah, I’m okay.
And you would not consider taking the, you know, opportunity to have some help now, because I guess you know, later on in life, you’re not going to be as you know, young. So…
Well, I’m not so young anymore I’m 48. But I don’t know because I think what it was I am going to be honest, why I got some mental damage from my childhood. I was rejected by my mother when I was like, few hours old. I wasn’t being looked after by my own mum and complete was with strangers and then with my grandmother. And then I vouched that whenever I have my own children, I will never never never abandon them. Even if I have to live off the quater that I’m poor. I want my children them aside at all times. Yeah, even if I’m suffering I still want to try. My eldest child is 22. My youngest is 14, Edward is nearly 17. So it is hard work. It does get me tired, but I am really happy when I see my children around me. They’re my everything. See? Sorry. So yeah, what I’m saying is, I don’t want any parent out there to be like me because nobody has been rejected. There are people out there that might have been rejected, but because of my damaged self that I’ve managed to heal over years see. So yeah, I am really happy to me.
Thank you so much. Oh, this is so sweet. This is really sweet. So, it was so good to speak to you today. I really enjoy. And thank you so much for giving us so much insight and details. I really appreciate it and I thank you so much. Before we close, can you please answer the following questions within your best abilities? Blue or brown?
Kiss or hug?
Cheese or sweets?
I love cheese. Definitely.
Book or music?
That’s it for today. Thank you so much. Thank you, Cynthia. Oh my gosh, that was so. So good. Thank you even I mean yesterday was very good. But today, it was more I guess open.
Yeah, just I never know I don’t write anything down. Don’t know what to say.
So maybe it comes across that way when it’s my kids.
It’s okay. It’s perfect. It’s good. I like it.
Thank you so much. I hope it works out all right this time.
Yeah, I think this one will be perfectly fine and so what I will do I have to send you the voucher. I and then oh yeah, I sent you the email let me know which one you like. And in two weeks time we can do another one.
Okay, I’m going to get a headset microphone. Yeah, just get myself already.
Thank you. Have a lovely evening.
Bye bye and you can text me anytime you know.
Course I will. Bye
Transcribed by https://otter.ai