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BBC Ouch Podcast: The Single Disabled Woman Who Adopted A Disabled Child

May 27, 2014

There are a lot of good things on the latest Ouch! podcast, as always, but the part that caught my attention was about Lesley:

Lesley has adopted a disabled toddler with complex needs – a fact made remarkable because Lesley is herself disabled, single, and uses personal assistants in her own day-to-day matters. Lesley, who’s in her 20s, tells us she adopted her because she feared the child would spend the rest of her life in an institution.

Her section is about 17 minutes in. You can listen by clicking the link above, or here is a transcript of the section:

So Lesley adopted 17 month old Rachel, a disabled child with complex needs and has had her for about eight weeks now. We hear adoption is a difficult process with multiple reasons why you may be rejected as a potential parent, but this didn’t stop Lesley who felt strongly she had the ability and love to adopt. Lesley is 28 and believes she’s the first person to adopt who’s disabled, who uses personal assistance for her own care purposes and who is single. Many would think that there’s already plenty of room for rejection or discrimination, but let’s also add in that she’s gay, Jewish and in her own words, not entirely Caucasian. Now wow, Lesley, I think you might be the most minority person we’ve ever had on the show. Can you tell us a little bit about Rachel, what’s she like?

Rachel is now 17 months so she was 15 months old when she came home. She is a very easy-going smiley little girl who has a severe physical impairment and visual impairment as well as a few other bits and pieces. When I received her profile, unlike other children where it says about their interests, what they like, what sort of things make them smile or whatever, Rachel’s was a list of medical needs with nothing really to say anything about what she’s like as a person. And so it’s been a bit of a voyage of discovery since she’s come home for me to get to know her because I was starting with nothing. And what I found is that she’s a cheeky, nosy, perky, fantastic little girl who is also severely multiply impaired.
And is that who we can hear gurgling away in the background there?

Yes indeed, that’s Rachel’s breathing. That’s about as quiet as her breathing ever gets.
And is she chatty? What’s she into?
She absolutely loves our cats and gets massively hysterically excited whenever there’s a cat within her sort of field of vision.
Great.
She plays a lot, she likes a lot of the usual sort of baby games and stuff.
So what made you decide to choose a child who had these additional needs?
I grew up round other disabled kids. Although I benefited from an inclusive education and was not discriminated against as a child particularly because I was minimally impaired as a young child I grew up round other disabled kids and this then sort of merged seamlessly into helping look after disabled children as I moved into adulthood. I did bits and pieces supporting my friends as a child and then moved into looking after kids. So actually the majority of my experience caring for children is caring for disabled children. So just for starters that’s what I’m more used to is looking after disabled kids but also I spent a period living in a nursing home a few years ago when my housing needs meant that my local authority were not able to accommodate me for a period of time. And while I was living in that nursing home which had a young adult unit a lad arrived who’d just turned 19 and had therefore, as was then, just aged out of the foster care system. They dump kids at 19 years old if they’re disabled, I think even younger if they’re not. And so he turned 19 and was promptly dumped in a nursing home. I realised then having already been thinking about becoming a parent and realising for other reasons that adoption was likely to be the best way for me to become a parent that disabled children who aren’t adopted will land straight in institutions.
So when you saw Rachel you thought I don’t want this to happen to her, is that what made you do it?
Not so much for Rachel as an individual child but in the general idea that I could parent a disabled child and achieve as part of that that at least one child more would not end up in an institution.
Now is it right that you originally wanted to become a foster parent rather than an adoptive parent?
That’s right, yes. I initially, mistakenly, thought that being a foster carer would work better for me. Now as I’ve understood the whole system better it’s become clear that that’s not the case, and that actually being a foster carer is an immensely difficult job that I’m not particularly well cut out for. But I didn’t know that at the time. And I got quite a long way into the sort of early process of applying with an organisation that specialises in finding foster carers and adoptive parents for disabled kids and they were very, very positive about the idea of having me as a foster carer until their board of directors realised that there was a very high chance that local authorities would discriminate against me as a foster carer and would not want to place children with me for foster care, and therefore there was a risk that the charity would invest a huge amount of money training me as a foster carer and then be unable to use me if no local authority would place children with me.
So you thought that it would be easier to foster and not do the kind of long term commitment but in the end it turned out the opposite way round?
Yes, I thought that the safety net for children of remaining in the foster care system meant that I didn’t have to worry for example about my own long term health which at the time I believed that I didn’t have a great long term prognosis. This is several years ago and that’s now also turned out not to be the case.
Then you did decide to adopt in the end. What made you change your mind?
After the sort of foster care application came to an end I’d pretty much given up, but a few of my friends new that I’d been interested. I got a text one day saying were you still interested in fostering or adoption because I’ve heard about this little boy. That became the early stages of a specific application to be considered as a potential foster, or as it turned out, adoptive parent for that child in particular. That didn’t work out in the end, I believe for discriminatory reasons although I will never be able to investigate or prove that, but after that ended I had by then really become attached to the idea that I could be a parent by adoption and it was a very nasty shock when it ended. And I was then by the same friends that had told me about this little kid in the first place encouraged very strongly to get straight back on the bike in March last year.
So it’s taken about a year to get through that process then. Was it quite tough to get approved?
Actually no, it’s been an incredibly positive experience for me. I was lucky to be assigned a social worker who had recently been involved in placing for adoption a child with a family where one parent is a PA user. So that social worker obviously immediately understood the basics of what being a PA using parent would mean, which is always a good start, and she was incredibly positive about me as a potential parent and could see very quickly that it could work. And so that turned very quickly into a formal application.
So to cut a long story short, I know that in November last year you finally got your parental passport shall we say and then you went to something which to me sounds in equal parts fascinating and slightly horrifying called an adoption exchange day. So can you tell me a little bit about this?
That’s right. Exchange days are when groups of local authorities who work together to find parents for children that need them and children for parents that need them get together to share all the profiles of all the kids and all of the prospective parents that they’ve got. Each local authority will attend with a load of profiles, A5 leaflets or similar and big blown up photographs of their children and of the prospective families.
So it sounds like a kind of trade fair almost. This seems a little bit distasteful, you’re treating children who need to be adopted and you’re selling them in the way that you’d sell, I don’t know, double glazing.
Pretty much, yes, although I must in fairness point out that the parents get exactly the same treatment. So then this space is, you know, each local authority has a table with the profiles on it, staffed by one of their social workers, and roaming around are adoptive parents with their own social workers looking at children’s profiles and children’s social workers looking at all the parent’s profiles.
Okay, so there’s lots of glossy photos, there’s lots of social workers giving you the hard sell, this child is fantastic, it’s a perfect addition to your home. It does sound like a furniture sale. So how was Rachel being sold shall we say? I hate to use that phrase but what was the promotional material for Rachel like?
One of the things that really started us on the path that made me realise that Rachel might be going to be my child was that she was being sold, advertised, for want of a better word, very badly. They’d used a tiny black and white photo of her, the size of a passport photo, nothing else, which showed her aged at perhaps six months so it’s an old photograph, fast asleep with a tube in her nose. So nothing of her personality or her sparkle was shown at all.
So why was such little effort made to, like you say, advertise her, compared to the other children?
I really don’t know, maybe I never will. I got angry on her behalf, this child I don’t know whose photo I’ve only seen once, I got cross.
And so that was a… It seems like a strange emotion to make you want to adopt a child, usually it’s some sort of instant love or bond, but it was anger that actually got you close to Rachel?
It is a bond though. If you’re feeling cross on someone’s behalf, if you’re angry on a child’s behalf then that’s a degree of sort of parental defensiveness that I think doesn’t often happen very, very early on.
So let’s fast forward to when you actually first met her, Rachel we’re talking about, tell me what she was like. What was the first encounter like, where did it take place and what was she doing?
I met her for the first time at her then foster carer’s home which was out in the middle of the countryside, a very, very long way from where I live. When I arrived she was crying in the next room and they eventually brought her through and just kind of plonked her on my lap. I should add that adoptive parents don’t normally meet children before the process of matching child and parent has been completed, this was a bit of a one off and probably shouldn’t really have happened. And at that point, this is now a good four months ago, Rachel was silent and passive. She lay in my arms and looked up at me, she barely moved and she didn’t make a sound, didn’t smile, didn’t do anything really.
And how did that make you feel? Was it what you were expecting?
From the profile that I’d read of her it was within what had been described in the profile.
And was there that instant bond, that instant maternal love? Did you feel that the moment that she was like you say, plonked in your lap?

I did. I’d already… the thing of getting angry on her behalf had already happened again by that point because she’d been left crying in this other room while all the adults talked because her social workers were there as well. And I sat there getting more and more furious that this baby was crying in the other room and I was sat there listening to her and I couldn’t do anything to make it better, I couldn’t even get into the room that she was in.
So this was the first time that you actually felt I can actually now do something with this anger, I can turn this into something positive and loving.
I think it had probably already started by that point, that sensation of this really could be my child. It’s very weird with adoption because you’re looking at profiles of children and asking yourself is this my child that I’m now looking at? And you might go through that process with ten or 15 children’s profiles.
So let’s quickly before we finish, I’d love to talk about this a little bit further, but very quickly, obviously Rachel’s with you now, we can hear her, we’ve been hearing her throughout this conversation, she seems very, very calm and happy, so what is it that you do and what do your personal assistants do? How is the work of being a mother split?
Right. Well I’m her mum and they’re not, so the work of being a mum is my job. They support me and I care for her basically. This will not remain so straight-forwardly the case as she grows up because she will herself need personal assistant support as a young person when she’s bigger, but at the moment the nappies, the feeds, the medications, the waking up in the night is all mine, but my PAs’ jobs in addition to what they were doing before now include rather a lot of fetching nappies, nappy bags, syringes, retrieving dropped toys, almost infinite loops of picking up slippers that Rachel’s levered off on the edge of her buggy, as well as all the stuff that they were already doing to support me and meet my needs of just sort of generic 24 hour PA stuff.
Well I know Barbara, I’m just going to bring Barbara in for a second, I know you have a daughter who’s an adult now, I mean does Lesley’s story here ring any bells for you as somebody who brought up a daughter as a disabled woman yourself?
Oh yeah, yeah, there’s a lot of things I recognise, I mean my daughter was a non-disabled child but it was interesting because she figured out quite quickly the stuff I couldn’t do, even when she was a few months old. So she used to cling onto me. You know like most babies are just dead weight, they’re just idle, they won’t do anything for goodness sake, and so she figured out that if she wanted to be picked up she’d have to hold on a bit, give me a hand.
Rachel does that as well actually, it’s great, she’ll really hang on. Once I put her up on my shoulder I can let go and she’ll stay there.
Yeah, exactly. I think they figure it out really quickly and what you’ll get is just years of great stuff. I mean I think being a parent is amazing, and it’s still amazing, you know, even when they’re older. And my one cooks for me now, I mean I couldn’t ask for more, she’s learning to be a chef and I just get the best food ever. So stick with it.
Good work. Good work training up a chef.
So it seems Rachel’s in absolutely no doubt whatsoever who her mum is, you’re taking on so much of the load yourself.
Oh yeah no question, but no PA user’s child ever wonders whether the PA’s their parent and I don’t think the fact that Rachel is being adopted is changing that really because there’s the same clarity that I am the face and the voice and the hands that’s here all the time. Every time she wakes up I am within the three or four feet of range where she can see me, every single time.
Well thank you, Lesley, for your story, it’s absolutely fascinating.
It’s an amazing story, thank you so much.
 

 

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