We were scared. Especially scared of what we didn't know because
here okay Down's syndrome we didn't know a lot about it.
It's okay to feel like devastated when you first get that news
and don't feel bad that you feel like that because it is a real shock.
What can I do? What can I do to help my child get stronger, what needs he has and how can I help.
I noticed Ibai had Down's syndrome markers, especially the eyes and the tongue as soon
as they gave him to me and so the first few weeks it was kind of a haze just coming to terms with
his diagnosis. We were scared, especially scared of what we didn't know I think because here okay
Down's syndrome we didn't know a lot about it.
In my case personally I was hoping he wouldn't have Down's syndrome
which now I look backwards and I think it was a stupid idea for me to have.
That tomato is good!
Is it good?
#I have a little hand, I don't have a little hand because it has come undone#
Ok, open your mouth.
And now we're practicing chewing.
Three. Very good! Very good!
Now on this side. One. Two.
I thought that he wouldn't have a normal life or what we call a normal life .
I had some expectations about how my son would be.
I think we all have expectations for our children and you have to let go of those expectations
and the letting go really really hurts.
Ibai is for us and I don't know I'm biased he's the best but he has lived up to
any expectations. We are so proud of him, we are so happy, he is a joy and he enjoys life he laughs,
he plays, he's very cheeky, he's the cheekiest. So yeah we let go of expectations and
that's I think that's the hardest part but then we got something amazing in return.
Bye mummy.
Amaliya, hold hands.
At that time I didn't know anything about Down's Syndrome
Because I grew up in a country that hides people with disabilities
and I had never met a child with Down's syndrome.
The important moment towards the full acceptance was when I was with Downright Excellent.
It's a charity, they said that these adults or teenagers or adults with Down's syndrome will be
dancing, performing now. I think my jaw dropped at how they were professionally dancing. All these
expectations that I put for my son, "he can't do this, he can't do this, he can't do this" were just, you know,
destroying in my face, like in my mind. It's like "oh my god Safroz can do this as well"
then I was just, what can I do to help my child get stronger, what needs he has and how can I help.
In your hand?
There it is.
When I did get the diagnosis I was, I guess a lot more upset than I thought
I was going to be so it was quite a shock.
I probably spent the next sort of couple of days really like processing it so it was almost
I felt like it was like a grieving process so I grieved the child that I thought we were having
I spoke to the Down's Syndrome Association. I spoke to a mum who has a
child with Down's syndrome, that was also really helpful and then I felt I got to
sort of a point of acceptance. My husband, however, found it much harder. I think one of the
things is where, everywhere you read about Down's syndrome it's all very very positive and
everywhere he read made him feel even worse because it was really hard to find anywhere
where people were saying actually when we first found out we were devastated.
Purple and orange and blue.
I can see a rainbow, see a rainbow, see a rainbow too.
We have started doing Makaton with Albie so it's a signing
method you use where you always speak at the same time. Makaton can be really useful to help
them communicate so if they're not able to speak until they're that little bit older it can
then present as behavioural issues because they're not able to communicate their needs.
The ball? Yes, love. What? You’re giving it to me? You’re giving it to me? Oh, your hand!
Did you see that? Well done! Yes, love!
The first thing I work with is respect for my son so I respect his times, I respect how he
is able to do things. I don't compare him to anyone else and I know that that he will get there
because he will. So right now he's working towards crawling. I do physical therapy with him,
play games with him so that he can reach those milestones when he's ready
and it's about him being ready, it's about him setting the time. It's also about trust,
trust that your child will do what he or she needs to do and that they'll get there because they will.
What's that?
One, two.
Excellent, do you want to move yours two from here?
One.
Yes, one and then?
Two.
Perfect.
Perfect indeed.
The main thing now is speech and language therapy
and you know now he can dress himself and undress himself. He's an independent little person.
Oh yes, you, oh yeah!
I've got your toy.
It feels like now it's time for us to tell Safroz about his diagnosis because now he's
big enough to understand that he's a bit different you know what he can do what he can't do and
he goes to mainstream school and sees what his classmates can do.
I think now it's starting to a little bit affect him in a way.
This is Crystal Palace and this is Brighton.
You had that when you were a baby didn't you?
Exactly.
This is Manchester United, what's his name?
Rashford.
He loves football, he knows even the names of main players
football shirts, everything about football he has and he's super excited about.
You do like it don't you?
Nice and comfy?
Yes, nice and comfy daddy.
He's putting his shoes on and it's a bit difficult for him for example or something that is a bit
challenging for him on his own and we hear it now a lot when he says to himself you can do this Safroz.
And he's doing it.
So I think that's the main motto for him.
Manchester City. What's his name?
Silver. You like Silver?
No.
It's not funny dad. It's not funny.
Alright sorry.
Finally.
I want chips.
You ate them so fast.
No, I some want chips.
I think because he's nine and it's closer to teenage years, it seems like we are starting to have
a little teenager in our house. So there are ups and downs there with the behaviour.
I'm meeting different mums, mums who have adults with Down's syndrome, so I think it's quite important to,
to have this network or reach out to mums who have older children with Down's syndrome.
Are you falling asleep mister? Hi you want some? Want some more? Yea.
It probably was every week that we would be having appointments
and because of his feeding tube we'd have as well we'd have
the community nurse coming every week. I think it was about a month after his operation he had
his NG tube taken out. He's managed to learn to breastfeed so now he's fully breastfed and eating
solids and we don't have the NG tube anymore.
Are you just sucking on it? Are you? Are you?
He loves being with his brother that's probably his favourite thing.
He makes him smile and laugh more than anyone else can.
To be honest, I'm not really worried massively at the moment about
anything particularly because he's got over his heart op and
now I think I just want to enjoy Albie and have a nice time with him and you know now we're going
to sort of do some classes and just do some normal baby things that you would do with any other child.
That's it! Well done!
What are we doing? Bicycle?
We can do bridge.
#It has tons of candles and playful prizes#
#I roll from side to side#
Sometimes we're scared about society more than the challenges
we face as parents, it's more about how society will treat our child.
Everyone around us have been so supportive it's amazing.
I think these kind of things take the best of everyone so starting with our family, friends
neighbours, everyone has been so supportive.
Well done!
Anything that makes sounds he loves. Every time he sees a tree his face lights up.
We took him to Kew gardens and he was like in heaven.
He's always smiling so it's easy to get a smile from him regardless of what you're doing.
We have had some challenges with him and some health issues that he overcame
but that probably even made us stronger with our attachment to him.
Don't waste your time, I would say this because I wasted my time crying or just having these
lower expectations and things. Safroz is nine years old now and nine years ago if I would know who
Safroz is now, you know as a cheeky little monkey and curious in life, so much love, I wouldn't
even drop, I wouldn't drop even a tear, one tear from my eye nine years ago.
I love you, I love you, I love you.
I love you, I love you.
It's okay to feel devastated when you first get that news and
don't feel bad that you feel like that.
Knowing that other parents had felt like that and then they came through and
it was all fine, is really helpful and that you know it does get easier.
You do then absolutely love your child and when they are born you absolutely love them.
What are you doing, what are you doing with your cucumber?
Look at the leaves. Look at the leaves.
That's it. That's it love.
I wanted to talk about the day when Ibai was born. We didn't know about his condition and that was
a shock. I think for both of us was kind of the worst days of our life and it was awful.
So I wouldn't like new parents to feel the same so that's a message for them. Everything will be fine.
I know you will feel scared of the future. I was really scared at the beginning,
really really scared but then I stopped thinking about the future.
Trust your baby, have faith in your baby because they'll be great.
It's a privilege to get to know a person, your own baby,
especially a person that sees the world in a different way it is a privilege I think.