Alize Adelle:The Unshakeable Bond: An Aunt, Her Niece, and Their Autistic Journey

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make you laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's guest is a Lee's Adele. She lives in the
UK and she's raising her artistic niece. Welcome to the show, least,
thanks for coming on.
Thank you, No, I'm glad to be here.
It's a pleasure to have you. It's my understanding that
you've been instrumental in raising your artistic niece.
Well, raising is I would say an odverb years because
she's let me get my quick mass. Yeah, she's thirty five,
thirty six in a couple of weeks time, but she's
severely autistic and requires twenty four hour care.
Okay, at what age was she diagnosed to artistic?
Oh? Now, this is a good question. She was born
in nineteen eighty seven. Now I have to remember now
my sister's history with her, because my sister is no longer. Yeah,
that's Hannah's mother, Hannah, her name is.
I'm sorry to hear that. What did Hannah's early years
look like as she was growing up?
When Hannah was born, developmentally, she had some things she
excelled quickly and other things sort of dragged. So she
was walking, crawling and walking and claimbing, my goodness, she
claimed everywhere. She was very hyperactive. She very advanced physically.
She was also mentally quite advanced because from a young age,
you know, she wasn't speech, She didn't have any speech.
She would drag ob Jackson items to a mother to help,
you know, for example, a bottle of soda. She drag
a bottle of soda over to aim other soma that
would open and give her a couple of soda and
not type of thing. But we noticed obviously that his
speech was not developing at all.
So there's a couple of things that I'm wondering here.
She's thirty five now, so when she was three years old,
autism wasn't really thought of that much, so she wasn't
having any really good results with her speech. How did
your sister approach that well.
There were a lot of things going on at the time.
One of the popular series was Along with an Awareness
beginning with Diagnosis of Autism eighty seven were looking around
the year that the cher Nobile disaster happened. I remember
that being forefront in my sister's mind, with all the
worry and the news about radioactivity in years so she
thought her and a group of other mothers who were
expecting and giving birth at the same time, quite a
few of them had children with learning difficulties, And of
course there was also another scare at the time about
the new mm OR vaccine and whether there was a
link with that.
That's a lot of things to be thinking about, especially
when you're trying to get a young child diagnosed.
But Hannah's path to diagnosis was very slow. We also
noticed that she was sound sensitive. She didn't like the
titlet being flushed, she didn't like hedreyeas she didn't like
the washing machine on Spain, etc. She went to a
clinic in London have treatment for sensitive hearing. But I
think I I can't be accurate, but I think it
took from the momentous speech didn't develop to about I
would say, on average, about five six years of age
before she actually got a diagnosis of autism.
When you got that diagnosis, that must have been that's
early on probably somewhere its late eighties, early nineties.
On eighty seven, so I'd say ninety yeah, ninety two wish.
So in ninety two autism wasn't really recognized all that much.
Yet how do they handle it? Did they set her
up for any type of therapy?
That wasn't really a great deal help for my sister Janet,
which is Hannah Smith there, I think she was briefly
offered what they call the British Signing for the Death okay,
which is like a standard, you know, universal course to
go on for the country to learn how to do
signing to communicate that Hanna's problem wasn't deafness, it was
understanding words being said to her, right. So that wasn't
particularly successful because Hammer wasn't learning what the sign language
meant herself, you know, right. But she did end up
going to a nearby primary school which had what we
would call a cabin I'm trying to think what you'd
call it is like a portable building that they drop
into our yard, and it was a unit where all
young children with special needs mixture. Okay, and I don't
think there was more than ten children in the area
that we're attending. So she had primary school education there
for her abilities. Secondary was the same another sort of
same sort of style cabin on the secondary school grounds
where she had, you know, a group again of very
special needs people and what would have been our university
college years between eighteen and twenty one residential then on
the outskirts of Cardiff in South Wales. That was excellent,
That was absolutely fantastic. She loved her tying there. That's
really great to hear that she found a good spot
that she liked. So how is she grown now?
Has she got to the point of more verbal or
does she still have some issues dealing with it?
Very limited. She's written down medically as nonverbal because she
doesn't ask conversations. Okay, she's very clear there. That's good
because she adapts. What she has is a series of catchphrases.
She's learned these catchphrases mostly from Disney films and cartoons
and such like, and she uses them appropriately.
That's really good. Early on they had a therapy where
they show pictures to the kids to have them relate
to what they wanted. Does she have to use that
at all?
She doesn't need it. She does it herself. Very recently,
she's drawn a picture of something she wants for her
birthday at an I wading well for me and I
wading seventy five five pounds, which is MU stolen dollars
eighty ninety dollars, right, right, But she draws, She draws
what she wants. She uses a tablet, but she gets
onto the internet and picks out images. She types what
she wants. She can find the image of what she
wants and she shows me. Okay, so she's very adaptable.
I have a certain instinct as well for things like
when she's hungry. But try and get her to ask
that certain you know, some things she doesn't register. But
she is hungry, you know really, you know, if she
left her own devices, she'd go without food, even if
it's prepared and ready for her.
Well, now, some artistic people have issues with the texture
of their food. Is that an issue with her?
I think so. She's obviously again non verbal in being
able to describe that, right, right. But she loves to
tomatter catcher. Okay, that hates to matters. She will spit
them out. Okay, not non onions. That could be a
strong flavor, but texture as well. My grandfather, my father
and her grandfather, he didn't ys for the texture as
well as the taste. Strong cheeses. Again, that could be
more flavor than texture. She can't really say about texture,
you know, but I guess it's in the mix.
It sure is. Everyone's different. So how's her temperament. It's
known that artistic people can have major meltdowns, and some
can have your meltdowns. How is her temperament? Overall?
I'm very lucky. She's very good, very happy. Most of
the time, lockdown was challenging, you sure was for all
of us. We had a terrible set of circumstances. In
October twenty nineteen, my sister fen Ill and I took
it to an emergency after trying to get sense from
our local doctors, and she was eventually diagnosed with cancer
and would have to receive She meant.
Oh wow, that's just so sad to hear.
They had said it was terminal, but they were going
to go ahead and give chemotherapy a goal to extend
her life. But she was very, very sick at the time,
and she didn't have to ask, but she asked me
if I would take care of Hanna with it possibly
being permanent, and I said absolutely in a hard spit.
Wow, that is just tremendously amazing. What a great thing
for you to do.
But then in the UK I were lockdown came in
March twenty twenty. My niece I always think of her
as a girl, even though she's thirty five, she's got
that personality. So this poor girl was face now with
the mother in isolation, so we couldn't see her.
Well, I can't imagine that.
And her mother was quite sick as well, so she
wasn't a for phone calls, so she had no way
of seeing or contacting him at there.
That is just so sad.
Left her family home to come and live with me,
so a lot of her belongings at that moment, until
we were able to meet up as a family and
organize a move again, we would have locked down. Nobody could,
you know, go back and forward easily, right, She couldn't
go out for stopping walks, cinema and she went into
huge meltdown because the biggest and most challenging behavior I've
ever ever experienced from her because she's generally so pascid.
That's just so sad to hear. These were extraordinary times
and we'd never seen anything like this. It must have
been really challenging for you, but challenging for her as
well because she couldn't see her mother.
Now she sells hams in her temper.
I've heard that a lot. Unfortunately.
She did at one point almost go to shake me
on Lockdown, which is the first time she said the
late hands on anybody, but she thought of it and stopped.
So She's very, very caring about your space. But she
will scream there very high and very piercing, very loud
in your face when she's having meltdowns. But to be fair,
she's come through all of that. We've she accepted her
mother passing away superbly. I could not believe it.
Wow.
Obviously she was sad and grieve, but I think a
lot of her grieving was at the beginning of Lockdown.
Well, that is just a lot to take in for
a young girl. It's just amazing that she did so
well considering everything that was going on in everyone's life.
Exactly, and we were trying to explain to her that
MAMMI sick. We kept it simple, ma me sick.
Sounds like the best way for sure.
Eventually, I think I had a breakthrough with her understanding lockdown.
She can read a little bit, and she loves London
and she knows what London is. I showed her Piccadilly
Circus with pictures saying from the our National Health Service
or Healthcare and the banners saying staying home during COVID.
That must have been pretty tough on you to try
and explain what was going on around the world, because
that was tough for everyone.
I couldn't explain to her what COVID was. I couldn't
explain to her it was a gym or it is.
She couldn't get it.
That's totally understandable.
So it's so I showed her very simply this banners
saying stay safe, stay at home. I showed her the
red double decker buses which are from London as well,
you know, synonymous understanding and they had the same banners on. Okay,
I showed her Boris Johnson and told her he's the
boss and he says stay at home as well.
Did that help her understand it at all?
Something clicked and I could she just went okay, okay,
and I could sort of almost get that moment of
connection with her, And I thought, she doesn't know why,
but she knows it's not my decision to stay it
to home. I'm not the wicked witcher because I think
a lot of it. She thought that I had suddenly
taken over and stopped her from seeing him and taken
her from a role.
Yeah, I mean that's a tough situation or someone that's
not artistic, let alone someone that's going through what Hannah
goes through.
Yeah, I'm trying to understand where her mind was. If
I was in her shoe.
That speaks very highly of how you're handling the situation.
You have to think of your situation too, in your health.
I got to be honest. This is why I said
at the top of our conversation about Max from Showbot.
She was amazing. She put in every day to make
sure I didn't go insane.
It's always great to have someone in your corner for support.
A pass from the physicality. I felt like a batter device.
I'm going to explain this, because she would follow me
around the house with this metdown self humming and screaming
and shouting and occasionally slamming those to the point where
objects are getting thrown off the walls and breaking. And
again this is not as severe as what man is experienced,
you know, all overload time, right with the same people
with Hanna's condition, you know, right right, But I couldn't
get away from her.
Well, that's a tough situation to be in for both
of you.
We were on lockdown. We were only about fifteen minutes
exercise outside of the house.
That's just so tough because that's when the walls in
the house seemed to just close in on you.
Yeah, she'd follow me around the house everywhere. She'd stop
me from sleeping. You know, I was trying to get
you to sleep. One of her mother's bad habits was
she used to leave Hannah sleep when Hannah felt like it,
and sometimes she would stay up till three four am
in the morning playing games. So I was trying to
break this cycle, you know, which was another added problem.
But thankfully now she's in a normal routine.
Well that's the key, just getting someone to get used
to a certain pattern, then hopefully they'll jus do it.
At the time, I was another bone of contention. I
would have lights out, games off, TV off, wing to
wind down, and I would give her time cometowns, you know,
to tell her ten minutes and then switch off.
So how did she handle the new structure in her life?
And she was terrible. She'd come in and rip the
quilt off me and turn the lights on and generally
have a meltdown because I was going to sleep, so
I was getting sleep to cry and being screamed at
all day.
That's a very tough situation to handle.
Actually, when you screamed so close into the face, within
inches and as loud as.
She does, So how did you find a way to cope?
At one point, I slapter so hard across the top
of her arm. She actually stopped and burst into tears,
and I felt so giddy. But it was a reflex reaction.
I didn't expect it, you know, and it was a
reflex reaction. So I was feeling I was failing, and
you know, God God helped me, prayed, you know, for
something to happen. First, to somehow find some sort of
symbiotic coexistence in the same house.
That's just such a tough situation. So what happened from there?
And at one point I actually locked myself in the
bedroom just to get away from it.
I guess the next question is did it work well?
Is this, in hindsight is actually hilarious, okay, because and
I mean it's affectionately. The little cows started battering the
doorking and not just kicking the door, but kicking the
wall in the hallway, which is just a weak partition wall,
and slamming and slapping the door, and yelling, let me in,
let me in. And all she wanted
to do was to scream with me. There was something
she wanted. I locked myself in and I wouldn't let
her in. I was shouted go away all the time
at time, okay. And she got out of the back door.
The back aream was secure, so she could come and
go in the garden as she pleased, you know, Okay,
she could have the back door and started banging the window.
And she was outside banging the bedroom window shouting at me,
let me in, let me in, let me in. I
had to because I thought, oh my god, we've got
name here. They're going to fall bease thinking I've shut
it up to the house. Actually I'm locked in the bedstroom.
Oh that's a tough situation.
And I got like a social worker because of our
unique situation. And I thought, my gosh, so she's a
service is going to be here, They're going to take
her away, and I'm going to be in trouble, and sought,
oh this is something about her. Now. She's beautiful spirit,
absolutely beautiful. But there's a Machiavellian manipulative streak in her,
you know.
Well we all have that at times.
She knows how to work you and how to get
her own way.
So how did that end up once you brought her in?
Did that help settle things down for both of you? Well?
No, that was just one memorable moment to describe what
it was like on lockdown. Bearing little help from the GP,
I found the GP to find out what could be done.
I don't know what the American name for the band,
but the British name is Diazepam, which is in a
family of you know, relaxes. Okay, he didn't want her
to get hooked on them, but he said, in an emergency,
you could give her a dorse of up to two tablets,
you know, to see if that will calm her downright.
I joked that I'd be back from more because they'd
be handy for me if they don't work on Earth.
Well, a little levity is always good in life.
To be fair. As I said, once I had that breakthrough,
I was telling you about getting her to understand there
was a reason we were staying home because outside at
the moment was dangerous.
Right.
She did seem to switch and code better. Okay, good,
And as time progressed and she realized Mammy is very sick.
One thing that's fabulous about Disney, thank god, because she
is a huge Disney.
Fan, as most are.
Disney are very good at getting children in early understanding
about death in their cartoons, so you know, she understands
things like Bambi's mother dying and in the King when
Mustafa dies and he understands the concept of death. So
I'm sure she knew him mother was going to die
before we have to tell her. And I think that
was prot of a problem as well.
You know, yeah, I get that, and it is just
so tough to lose a mother at any age. Did
she get to see her at all zoom or a
phone call or anything that would give her a connection.
No, No, just before lockdown. My sister had been going
through half of her chemotherapy, right, and she was very
sick and week she had lost all a hair.
Yeah, yeah, and we went.
To see her in this for want of a better word,
hospice right were looking after her. I could never have
looked after both of them at the same time.
Oh yeah, that has been tough because.
Also John, it required transport back and forward to hospital
to receive treatment for our care and bathing and all
the rest. You know. Sure, So Hannah saw her mother
just before lockdown, and that's saying, you know, one picture
paints a thousand words. She could see her mum was
very ill and I've lost a lot of weight and
the hair loss. She actually she actually went forward and
lifted her mum's cup to see there was any hair
undernise And Janie sort of looked at me and said,
I don't know if she should see me anymore like this,
it might upset her. I said, I don't know what's
for the best, I said, because the advice I said
from the social workers is that you know, Hammad does
have a great deal of more understanding, if not in language,
she can see things and has a certain amount of
her well, and she's incredibly intelligent in many ways. You know.
Well, that is just such an incredibly hard situation to
be in.
The decision was left out of our hands in the
end because lockdown occurred. It was summertime when we were
allowed to meet people outside monthly. We weren't supposed to
meet my sister inside. But she was sick. She was
just sick to be reeled outside. And I won't name
the hospice, but on compassionate reasons, they decided to turn
a blind eye and they allowed one family member next
of kin to come into the room fully masked, ppe
scrapped and gloved, to go in and spend some time
with our sister because they knew that her death was
close by. She refused further chemo after lockdown. She only
had half her chemo. She wanted to go. Basically, she
was in a lot of not pain, but she was
just tired and regiven up. You know.
Yeah, I had a friend of mine that was in
the same situation. It's a very tough ruling process, and the.
Treatment is grueling on top of it as well. You know,
she just didn't have any in her.
Yeah, and that part is just so tough.
I saw her personally, I couldn't bring Hannah. That would
have broken their agreement. But to be honest, she was
in such a sad Chile state. I think it's been
cruel and Hannah to see her at that point.
Yeah, and that's a tough decision. What you had to
do was best for her. Did you get a chance
to see her one last time?
Well, actually I did see her the day before she
passed away. She passed away August thirty, yeth twenty twenty.
Well, even though that's said, you can take comfort knowing
you did the right thing for her and her daughter
and she is in a better place now.
Well, do you want to know what a horrible twist
of irony is?
Okay?
I was sick last year. Hannah and I got a
very great, stable relationship. She has her own room with
all her needs and it's fully decorated in the theme
of Disney Frozen, and we were going along, getting along famously.
And last year I got sick in the gym and
at the end of September I was diagnosed with bowel cancer.
I was rushed into hospital because my digestive tract was
blocked by the tumoring the bow well, I had to
have an emergency colostomy. I've been through five weeks of
radiotherapy every day Monday to Friday for five weeks. I
had three months of chemotherapy. Sadly, I've had the news
that the cancer has spread to my lungs. Now I've
got I've got about twelve months.
Wow. I just don't know what to say. That is
just such awful news. I'm so sorry to hear this,
both for you and for Hannah.
Now it's happening to her again, and that that makes
me most mostly angry.
I completely understand that for sure.
I started to get to that place where I really
felt I was doing a great job of looking after
her and coping myself. And her room was beautifully decorated.
So this is the very first time she's had a
bedroom of her own decorated the way she wants it,
because she's asleeping with me and my Mee's room all
the time. So she has her own bedroom now and
she can get all the belongings easily. They're not sort
of mixed up and lost, and all her clothes are
in the world driven in the campus rather than on
the floor, and in the temper dry yet.
Well, I'm just so glad that she's adjusting.
She's she's loving this new bedroom, and it just upsets me.
I don't blame you at all for being upset. I
don't know how I would react with what you have
to deal with. Now.
I know I can content a bit, but I'm so
cross with cancer because I had promised my sister that
I was going to take care of her the best
I can.
Well, there's no doubt in my mind that you've done
everything possible to make a good life for her.
Yeah, I just wish I out longer than twelve months.
Yeah, me too. But you never know. They're always coming
up with something new. So maybe they'll come up with
something that might be able to help you and extend
your life a little.
I don't know, I don't think so. I mean, they
haven't offered me any alternative set apiece because what they
offered is chemol and the effects of chemoids incredibly incredibly grueling,
and this next round of chemo they offered me was
going to be even more intensive.
Ah, that's I hate to hear that. That's just so sad.
Well, my philosophy was that if I could gain an
extra few months at the end of my life. It's
taken me three months to recover from the last chemo,
and obviously during chemo, I was also very sick right,
and I didn't on the advice. Basically I didn't allow
anybody to come near me without a mask on.
That makes total sense, but.
As I had spent five weeks in hospital with various
infections because my immune system was mess.
How is Hannah handling what you went through? Because where
she's living with you now, she has to see what's
going on and where you said, she's very intelligent, she's
probably realizing something's not right.
Oh, absolutely, she was better. As I say, she's got
a very beautiful soul. She's very very caring, and she
was tremendous. She was wonderful. If I asked her to
go and get me some water, she'd get me water.
She kept her volume because she's quite loud. She likes
to sing along to music and out and dance, and
you know, she's happy, always noisy.
Well, I think it's great that she's doing what she's
doing to help you, especially with all the challenges that
in both of your lives right now.
But it has been the biggest challenge of all for me,
obviously from the challenging behavior that she had. What wasn't
challenging was the fact that she's my niece and I've
often taken her out on my own for a few
hours every week to give my sister a break, so
I was very familiar in general on how to care
for her and communicate with her on a big, big level.
My most challenging aspect of all of this is becoming
a new parent. Never had children of my own, and
suddenly I was a parent on lockdown.
Well, it seems like you've done a fantastic job.
Well, it's been. It's been beneficial in many ways. And
what'st been interesting is that I've been able to bond
with friends my age who have children and and ruly teenagers.
You know, in many many ways I would class as
a teenager a young teenager sometimes. Although she does have
a massive crush on Will Smith, I haven't told her
that he's in the bad books at the moment.
Yeah, okay, I don't want to burst book.
So yeah, she could be very much make a very
stroppy teenager.
It does sound like you've had some good times though, I've.
Had some fun conversations with other mums that I never
had before, who have been friends for years. But I'm learning.
I'm learning more aspects about my friends as well well.
Even though you've been thrown a curve, it does seem
like things are working out.
The way I see it. I always wondered why I
never have a chance to have children of my own,
and I accepted it like many women do, as it's
just you know, those things. And I really did feel
that God had set me up for the moment to
take over, you know, and counciler is a wicked thing.
Maybe this is God's plan. Maybe you know, it is
time for Hannah to be more independent and live them
live in a house suspesion needs and have a new life.
And maybe that's this fall and this is my time
to come.
Well. I have to say, what a good person you
are to think the way that you think and handle
it the way that you are. Hannah is a very
lucky person to have you in her life. I think
you told me that her mother wanted her to go
on a Disney cruise.
One of the things I said was to make sure
she goes on holiday on the Disney cruise ships. After
I had come out to treatment, and started to heal
from the treatment. Her brother said, right, everything has stopped
us from going, including lockdown and your ownness. We're booking it.
We go wing or we'll we you know you'll miss
you'll miss your chance. You know. Travel insurance was horrendous
to find and costly when we did find it, but
we managed to go on a cruise a couple of
weeks ago.
So with this being something that she's never done before,
how did she handle it?
She was outstanding. She cooked with queueing because obviously you
to go on to the ship and queue when you
come off. Excellent with crowds, small spaces and lots of people,
she was wonderful. She was wonderful about food. She was
an adventurous but she did try a little bit of everything.
Now she was she did she did not. She had
two tiny blips, as we call them. One was rescued
with a generous other Auntie. My sister really went to
the rescue and bought her a new cup as her
old cup broke. And there was a moment at the
table and I just said to her, look, you know
you have a choice. You you either reach my site
in the restaurant or we eat in the cabin and
day she comes can me saying hello, say hello to Tony. Hello, Tony,
hellos about it. She's done a job, she said hello,
and now she's gone.
Yes, she did her job, and I think it was awesome.
I also think it's awesome what you've been doing for Hannah,
giving your circumstances. I think that you've gone above and beyond,
and it shows what type of person you are, and
that's a truly great person. With that said, I have
to say this has been a tremendous conversation, one that
I will remember for a long time. I really appreciate
you taking your time coming on to my show today.
No, it's been lovely chatting gave her, spending your time
listening to me.
It has been my pleasure. Thanks for taking the time
out of your busy schedule to listen to our show today.
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