5 Questions with Michael & Paul Atwal-Brice

Michael & Paul Atwal-Brice

Proud parents & passionate advocates for #adoption #samesexfamilies #disability

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Please share a little background about your rare journey with us: We are the proud parents to two sets of identical twin boys, Levi and Lucas who are 17 years old, and Lance and Lotan who are 5 years old. We started out by being foster parents, before agreeing to adopt Levi and Lucas when they were 2 years old. Although we knew that they were a little delayed we thought they would just catch up once they were in a loving home. Once we began to realise the full extent of their needs we were already strongly attached, they were our boys, but it was really hard and we were thrown in at the deep end really. When they were 3 years old they were both given a diagnosis of severe autism. About 6 months later they started having seizures. We will never forget the paramedic saying to use “I’ve got a funny feeling that we’re going to see in a lot more of these boys’ Dads.” Today the boys have multiple different diagnoses beyond their autism and complex epilepsy, including speech and learning difficulties, global developmental delay and mobility issues.

What does a typical day in the Atwal-Brice household look like?

BUSY! We often say we really need our own PA to help keep on top of everything. We have a diary that everything gets written in, all the different appointments, things we need to do, lists etc., and sometimes we say to each other on a Sunday that we don’t dare look beyond the Monday! Initially, just Paul stopped working but eventually we realised we both needed to be at home to manage. Our days are always a juggle, starting bright and early with breakfast, medications and just generally getting everybody up and out to two different schools in the morning! We have some PA’s who come in to help and that’s vital to allow us to spend time with the younger boys because Levi and Lucas can’t be left unattended. Of course, if one of the boys needs hospitalising after a huge seizure it’s all hands on deck! So, we must have to be super organised and prepared for anything.

If you could offer any advice to other families on their own rare journeys what would it be?

We are lucky that we have each other, we always say how hard it must be to be a single parent to a child or children with complex needs because they must be exhausted. We feel passionately that families should be given more support at home, the support that they need to be able to care for and support their children at home, so they don’t have to go into care. We both hate it when people say our boys are lucky because they have two parents who can and will advocate for them because they shouldn’t have to be lucky to get what they need. So, we try and use our platform to help. Our advice would be to find organisations that can help you if it all gets to be too much!

What do you both do that is for yourself?

For years we didn’t really do much for ourselves, but we try to do more now, sometimes just simple things like looking around a garden centre, or just catching up on some sleep really helps!

We both love to be in the garden; planting, cutting the grass, or painting the fence making it look nice for the summer. We have a little sensory garden for the kids, which is planted with different herbs for the boys to smell, and flowers with bright colours so they can see what can grow in the garden. We have a few fruit trees too, the boys love picking an apple at harvest time.

We also really, really enjoy going to gigs, from Billy Ocean to Christina Aguilera! Paul was a professional dancer and we love a good boogie. We’re also proud ambassadors of some charities, Caudwell Children and AFK (Action for Kids), working to support and raise awareness of disabilities. We both really enjoy helping out with lots of charity events, supporting and attending fundraisers feels like a great way of giving something back to us.

What is your favourite family memory?

Our favourite family memory has to be our family trip to Walt Disney World in Orlando. Levi and Lucas have been a few times before and it’s their favourite place! They love theme park rides and all things Disney. Last year’s trip was Lotan and Lance’s first trip abroad and it was so special to see all four of our boys having the time of their lives, especially after how difficult covid was for them all.

Levi and Lucas are so much happier and come to life in Disney, it’s just wonderful. They tend to have far fewer seizures as well, when we spoke to the neurologist they said it may be because there is so much more activity in their brains that it leaves less room for seizures… if only we could live in Disney forever!

Rare Navigator

Help when you need it

At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.

Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.

We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007

Our support area of North Wales will be expanded for the time-being and if we can't help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:

•Home visits (whenever necessary)

•Supporting families to understand the choices of care that may be available

•Helping families to access their local healthcare services

•Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker

•Working with schools and teaching staff to provide information to support children in attending and achieving at school

•Accompanying individuals and families to clinic appointments or meetings.

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FASHION www.coastfashion.com www.asos.com www.laurawisinger.com

IF ONLY THE WORLD SAW WHAT WE SEE www.cdls.org.uk

JACK CARROLL - WALKING FUNNY www.jackcarroll.co.uk www.cerebralpalsy.org.uk

MAKING THE MOST OF SUMMER www.essentialaids.com www.amazon.co.uk

Supported by:

RARE TALES www.simplybe.co.uk www.ehlers-danlos.org www.coastfashion.com www.lauracranetrust.org www.limbpower.com www.changingfaces.org.uk www.alopecia.org.uk

REVISITNG KATJA www.moebiussyndrome.org

THE SPACE TO TALKENGAGING MEN IN CANCER SUPPORT SERVICES www.maggies.org

WE’RE A TEAM www.aheadofthegamefoundation.com www.indeerosetrust.org www.sticknstep.org www.clairehouse.org.uk

WE WILL NOT HIDE www.faceequalityinternational.org www.catrinpugh.com www.katiepiperfoundation.org.uk www.changingfaces.org.uk

WHAT WE’RE INTO www.pennywincerwrites.com www.bbc.co.uk/iplayer/episode/ m001k2z5/an-irish-goodbye www.podcasts.apple.com/gb/ podcast/diffability/id1616031899 www.camraredisease.org/ uniquefeet

WHY SHOULD HE CHANGE?

5 QUESTIONS WITH www.afkcharity.org www.caudwellchildren.com www.atwalbricefamily.co.uk www.samebutdifferentcic.org.uk/raritylife