World Down Syndrome Day Special: JANNAH AND MUSA'S STORY

BLUE MUMDAYS

For this Blue MumDays special celebrating Down Syndrome Awareness Day, I'm joined by the beautiful Jannah Hayah. Jannah talks to me about life with her gorgeous son Musa, who is 5. Musa has Down Syndrome, hearing loss and is fed via a feeding tube. Jannah is passionate about wanting the world to know that while a life living with disability can have its challenges, the struggle comes with incredible rewards. It's a wonderfully life-affirming conversation.

*TRIGGER WARNING: *Birth trauma and a very brief mention of feelings of suicide*

IN THIS EPISODE WE DISCUSS:

[00:00] Teaser quote.

[02:25] Introduction to Jannah and Musa.

[04:43] Judgement on Jannah looking well presented - double standard for women.

[11:08] Life before Musa. Transitioning into a mum with her older children.

[12:59] Musa's traumatic birth. Receiving the diagnosis of Down Syndrome.

[19:47] The damage of the words that were used.

[23:18] The need to take your time to accept and find peace with the diagnosis.

[26:01] How Musa has shaped Jannah into the woman she is today.

[27:36] The hugely positive affect Musa has had on his older siblings.

[31:54] The social model of disability - the need for society to be more accessible and inclusive for all.

[36:50] How people 'give up' making an effort as soon as they hear Musa is disabled.

[38:25] How Musa is determined and finds his own way in the world.

[41:19] Lack of support and information for Jannah at the time of the birth.

[43:54] Musa's difficulties feeding, due to low muscle tone.

[47:32] Being dismissed and ignored when asking for help.

[49:23] Hitting rock bottom. Discovering local group Jolly Josh - an absolute lifeline.

[53:37] Meeting the dietician - having the feeding tube properly explained to her.

[55:56] How Jannah's culture and religion perceives people with impairments and conditions.

[57:43] Musa's legacy - educating the world on inclusion.

KEY TAKEAWAYS:

1. Follow Jannah and Musa's Instagram or Twitter Feed for endless positivity and inspiration and to learn more about Musa’s journey.
2. Jannah is an Ambassador for Making Chromosomes Count, a challenging, thought-provoking and inclusive non-profit magazine exploring the fascinating kaleidoscope that is Down Syndrome.
3. The Down's Syndrome Association is a national organisation, committed to improving the quality of life of people who have Down’s Syndrome, promoting their right to be included on a full and equal basis with others.
4. NHS information on Down's Syndrome – click on this link for more information about the condition, where people are born with an extra chromosome.
5. Cristina at DiffAbility Charity is the amazing mum who delivers free ‘Welcome to the World’ packs to new parents in hospitals, welcoming and offering support to babies with Down Syndrome. Diff-Ability is a charity creating to create events and opportunities for people with disabilities, learning disabilities, Autism and neurodiverity to engage in with their families and friends.
6. Shani Dhanda is one of the UK’s highest profile and most influential disability activists. She is an entrepreneur, a broadcaster and multi-award winning inclusion specialist.
7. Scope charity campaigns for equality for disabled people. With 1 in 5 people living with impairments or conditions, disabled people are NOT a minority.
8. Follow this link to learn more about the Jolly Josh Charity, the local group in Rochdale which provided a lifeline for Jannah. Jolly Josh provides dedicated peer support and safe spaces for children and young adults, families, and carers of children with profound multiple learning disabilities, complex, and special needs.
9. Find out more about 'Positive About Down Syndrome' here – a fantastic resource of support and reassuring and inspiring stories showing the reality of life with Down Syndrome.
10. Click here for information on Contact, who support families with children affected by impairments and conditions. They also influence policy and campaign to tackle the inequalities they face.

If you enjoyed this episode, please share, rate and subscribe. It really does make the difference in helping others find it – which means helping more parents in need.

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NEXT EPISODE:

Next time I chat to Nick Raeburn, aka 'That Social Nerd'. Nick came to my attention in a very brave and raw post he posted on LinkedIn where he talked about the huge flood of emotion he experienced in becoming a dad. Prior to having children, Nick had never cried - a result of the abuse he suffered as a child. This is a very emotional and deeply profound conversation.

SUPPORT:

If you are struggling right now, please know that it’s okay to talk and reach out for help.

YOU ARE NOT ALONE AND WILL NOT FEEL THIS WAY FOR EVER.

*** For support specific to this episode, see Key Takeaways ***

We hope these support services are helpful (please note we do not check or monitor them individually).

Action on Postpartum Psychosis (APP)

Moderated Forum, click here to find out more.

Email: [e-mail] / Tel: [phone]

The ADHD Foundation - the neurodiversity charity

Call us - 0151 541 9020 / Email - [e-mail]

AIMS for better birthing.

Email: [e-mail]

This email will go to a group of AIMS volunteers and someone will respond as soon as possible. / Telephone: [phone] (leave message)

Andy's Man Club

A non-judgemental talking group for men

https://andysmanclub.co.uk/club-information/clubs/ [e-mail]

Association of Postnatal Illness

Helpline: 10am – 2pm – 0207 386 0868 / Email: [e-mail] (Live chat online facility)

Beat Eating Disorders,

The UK's eating disorder charity.

0808 801 0677 / Email: [e-mail]

Best Beginnings

Free NHS-accredited Baby Buddy app offering 24/7 App support for new parents

Bi-Polar UK

email: [e-mail]

Birth Trauma Association

Email: [e-mail]

CALM

Contact CALM on their national helpline: 0800 58 58 58 (5pm-midnight)

Cedar House Support Group

Email: [e-mail] (Liz Wise) / Mobile: [phone]

Contact: for families with disabled children

Support, advice and information for parents with disabled children.

• helpline: 0808 808 3555
• website: https://contact.org.uk/

Contact a Family

www.cafamily.org.uk

Contact a Family offer support for all childhood conditions, are also able to put families in touch. Featuring a directory of conditions and rare disorders online.

Helpline: 0808 808 3555 (lines open Monday – Friday 9.30am – 5pm)

CLAPA – Cleft Lip and Palate Association

www.clapa.com - Information and support on cleft lip and palate treatment.

Dad Matters

Support dads to have successful relationships with their families, with mental health and accessing services through peer support and signposting.

[e-mail]

0161 344 0669

DadsNet

Offers support and knowledge through a community of dads on practical parenting and fatherhood.

Dope Black Dads

A digital safe space for fathers who wish to discuss their experiences of being black, a parent and masculinity in the modern world. [e-mail]

Family Lives

An organisation providing immediate help from volunteer parent support workers 24 hours a day, 7 days a week. Helpline: 0808 800 2222 / www.familylives.org.uk

Family Rights Group

Support for parents and other family members whose children are involved with or need social care services. Helpline: 0808 801 0366 / www.frg.org.uk

Fathers Reaching Out

https://www.reachingoutpmh.co.uk/ run by Mark Williams, offering support to dads.

FiveXMore

A grassroots organisation committed to changing Black women and birthing people’s maternal health outcomes in the UK. Email: [e-mail]

Gingerbread

Single parents, equal families. Help and advice on the issues that matter to lone parents. Helpline 0808 802 0925 / www.gingerbread.org.uk

The Hub of Hope - A directory of mental health support around the UK.

LGBT Mummies

Supporting LGBT+ women & people globally on the path to motherhood or parenthood.

Email: [e-mail]

Make Birth Better (Birth Trauma Support)

Email: [e-mail]

Maternal OCD

Peer support available, email [e-mail] to arrange

Mayah's Legacy

Supporting and empowering anyone who has experienced pregnancy loss to advocate for themselves. Email: [e-mail] / 0300 102 1596

The Motherhood Group

Dedicated to sharing and supporting the black maternal experience through peer support, projects and advocacy. [e-mail]

Motivational Mums Club

Offering Trauma, Mindfulness and Meditation sessions for Mothers and Mums to be with an NHS Mental Health Specialist, who’s also a Mother. [e-mail]

Music Football Fatherhood - [e-mail]

Open conversations around fatherhood, including blogs, peer support and podcasts.

Muslim Women’s Network

Helpline: 0800 999 5786, open Mon-Fri 10am–4pm with support offered in English, Urdu, Punjabi, Mirpuri, Putwari, Hindko and Bengali. Email: [e-mail]

Online chat: www.mwnhelpline.co.uk / Text: 07415 206 936

National Autistic Society www.autism.org.uk

Support and advice for parents and carers of autistic children, including support to develop a greater understanding of their child’s needs and accessing services that meet the family's needs.

Netmums

Netmums offer peer support via their Maternal Mental Health Drop-InClinic.

NHS

Contact your local GP surgery. Call the NHS on 111

or contact a local NHS urgent mental health helpline

If you are in crisis, visit Accident & Emergency at your nearest hospital.

PANDAS

Helpline open from 9am-8pm every day – 0843 2898 401

Email support available – [e-mail]

Perinatal Wellbeing Ontario

PRENATAL, PREGNANCY AND POSTPARTUM SUPPORT & CONNECTION in Canada

[e-mail]

Petals

Petals offers free-of-charge specialist counselling to anyone who has experienced pregnancy or baby loss. Tel: [phone]

Web: petalscharity.org/counsellingcontact/

Email: [e-mail]

PMH Support

Scott Mair is a consultant in paternal mental health and parent education, Peer support trainer. Dad, Husband, Army veteran.

Samaritans

Tel: 116 123 (this is a free telephone number and will not appear on the phone bill)

Web: www.samaritans.org

Email: [e-mail]

Sands Charity

Emotional and practical support for anyone affected by the death of a baby.

0808 164 3332 /Email: [e-mail]