Include Me TOO Ambassador – Sophie Walker

It is a huge honour to join Include Me TOO as an Ambassador and work together with them on the core goals that the Women’s Equality Party also holds so important: diversity, inclusion and equality. I understand keenly the importance of the work that this wonderful charity does and am committed to helping Parmi and her team break down barriers so that families from all backgrounds and communities can have the support they need.”

Sophie Walker is the leader of the Women’s Equality Party, Britain’s newest political party that aims to unite people of all ages, backgrounds, ethnicities, beliefs and experiences in the shared determination to see women enjoy the same rights and opportunities as men so that all can flourish. She worked for 20 years as an international journalist and has also written a book about raising her daughter Grace who has Asperger’s Syndrome. Sophie is also an Ambassador for the National Autistic Society and a patron of Ambitious about Autism’s Treehouse school.

Building the Right Support, Transforming Care Together

A national conference organised by Include Me TOO and supported by NHS England and partners Bringing Us Together and Irwin Mitchell Solicitors

  • Empowering Individuals
  • Right care, Right place, Right skills
  • Meeting Individual Needs
  • Building the Right Support
  • Choice and Control
  • Advocacy and Information
  • Transforming Care Partnerships
  • Rights, Respect and Dignity
  • SEND Principals
  • Person Centered Planning
  • Convention on the Rights of Persons with Disabilities

“People with learning disabilities and/or autism and their families have an array of rights in law or Government policy – through human rights law, the Equalities Act, the NHS constitution, the Mental Health Act, the Care Act, the Mental Capacity Act, the UN Convention on the Rights of Persons with Disabilities, and so on… [but] the lived experience of people with learning disabilities and/or autism and their families is too often very different. Too often they feel powerless, their rights unclear, misunderstood or ignored’. – Sir Stephen Bubb  

Partners:

 

 

 

 

Date: Tuesday 28th March 2017
Time: 10.00am –  4.00pm
Venue: Molineux Stadium, Waterloo Road, Wolverhampton West Midlands WV1 4QR

Links are provided below to download the booking form and the programme.

Booking Form
Programme

The Conference will increase understanding and awareness of the Transforming Care agenda to disabled young people, parents/carers from diverse communities and stakeholders.

During this event delegates will engage in discussions and workshops regarding Transforming Care, Building the Right Support improving services for people with learning disabilities and/or autism, who display behaviour that challenges, including those with a mental health condition.

Speakers will cover areas of how we can support and deliver the Transforming Care agenda, ensuring disabled persons and families can have their say in how they wish to be involved in their local Transforming Care plans.

The conference will also be highlighting the importance of the implementation of equality and rights approach to meet individual needs supporting rights and dignity.

Include Me TOO and Commonwealth Youth Council

Strengthening The Participation and Inclusion of Disabled Young People Internationally.

Include Me TOO, a national (United Kingdom-based) charity, joined hands with the Commonwealth Youth Council, an international youth-led NGO, to advance mutual objectives.

Include Me TOO an award winning charity has led on disabled children and young people, and their families, from a diverse range of backgrounds participation and inclusion for over a decade, with innovative and creative approaches. The charity is committed in promoting and supporting social justice, equality, inclusion and the rights of disabled children and young people.

The Commonwealth Youth Council (CYC), as mandated by the Commonwealth Heads of Government as the official voice of the 1.2+ billion young people of the Commonwealth, have embarked on an 18-month campaign to promote the interests of youth with disabilities. Their priority areas are empowerment of young people with disabilities, both economically and as community leaders; recognition of the work of young PWDs; data collection about young PWDs. The CYC is supported by the Commonwealth Secretariat that recently launched the Global Youth Development Index and a clear call was made for age-disaggregated data. The CYC is going further to make a call for age, gender and disability disaggregated data so that no one feels invisible to evidence-based policy. Overall, the campaign seeks to change perceptions.

Both organisations are coming together to strengthen the participation, inclusion and rights of disabled young people internationally with Commonwealth member states. The partnership’s project titled ‘Commonwealth Include Me 2’ will also be promoting disability awareness and understanding aiming to increase the positive attitudes and acceptance as well as developing a platform for diverse representation of disabled role models. Another key areas of the project is increasing the involvement of disabled young people in the planning and implementation of the Sustainable Development Goals (SDG’s) 2030’s agenda.

Over the next year there are a host of activities to expect from this partnership supporting this year’s Commonwealth theme, a ‘peace-building’ Commonwealth, Include Me TOO and Commonwealth Youth Council will be hosting

  • Two Twitter chats on the 14th and 17th March 2017 at 1PM GMT (Commonwealth week) to discuss ‘Ending violence and abuse against women and girls with disabilities’ and ‘Disability inclusion, rights, participation what matters’.
  • A Roundtable discussion where are we currently in supporting disabled children and young people’s rights in the Commonwealth.
  • Video campaign gathering stories of disabled young people globally their aspirations and goals.

Savita Kaye – Include Me TOO’s New Ambassador

‘ To be part of Include Me TOO is a great honour. This charity is highlighting diversity not just in UK but globally. I am looking forward to supporting the charity’s message of disability inclusion, diversity and equality. As my company House of Ikons also celebrates and promotes diversity both will bring awareness to the forefront, breaking down prejudices and provide a platform to change attitudes and increase disability role models’.

Savita Kaye the founder of House of iKons and Lady K Production team have bought international designers to the forefront. Giving a platform to designers around the world to media, press, buyers, high profiled clients, joining forces with Fashion One TV during London Fashio Week in 2013, giving global coverage to designers to 100million viewers world wide in over 120 countries.

House of iKons in its first three years has become a global successful company, hosting shows in Los Angeles, Beijing, Dubai and Abu Dhabi. Savita vision grows from strength to strength with international designers as far as China and LA and British designers gracing the catwalks of House of Ikons shows.

Designers have been signed to departments stores, boutiques, wardrobe for music videos and working with major celebrities such as JLo, Katy Perry, Lady Ga Ga, Paris Hilton, Brtiney Spears, Tyra Banks to name but a few.

Include Me TOO are delighted to have Savita Kaye’s support as one of our charity Ambassadors and look forward to strengthening the representation and inclusion of disabled persons through creative innovative approaches and increasing positive attitudes regarding disabilities.

Meet Pinky Lilani CBE DL – Our newest ambassador

Inpinky-lilaniclude Me TOO are proud to announce that Pinky Lilani CBE DL has become our latest ambassador to support Include Me TOO joining AJ Joshi, Apache Indian and Chris Holmes MBE.

“I am honoured to support the fantastic charity Include Me TOO and to be involved in their work, and I know that with the charity’s drive and energy, it will go far and spread a lot of happiness.”

Bio:
Pinky Lilani CBE DL is a food guru, author, motivational speaker and internationally acclaimed champion for women. She is the force behind the annual Women of the Future Awards, the Asian Women of Achievement Awards, The Ambassadors programme, The Inspirational Women’s Network, The Women of the Future Summit and the Global Empowerment Award. She is an associate fellow of the Said Business School, Oxford and Patron of DIL, The Westminster Society and Frank Water. She is an Ambassador for the Tiffany circle of the Red Cross and on the Board of Trustees of the Royal Commonwealth Society. She is a Deputy Lieutenant for Greater London.

Include Me TOO is now World Merit’s Merit360 Official Partner

Charities come together to provide global platform for disabled young people to be leaders of the future and changemakers.

This year marked the 10th Anniversary on the Convention on the Rights of Persons with Disabilities and Include Me TOO’s CEO Parmi Dheensa attended the United Nation Headquarters in Geneva during October contributing towards the review of the convention and progress made in implementing the rights and inclusion of disabled persons. A key concern was how to increase opportunities for disabled persons to impact and influence change including the 2030’s agenda.

During September 2015 the 2030’s agenda was launched and 17 Sustainable Development Goals, and along with many disabled people’s organisations Include Me TOO have highlighted it is key the aspirations and contribution of disabled young people are included to ensure no one is left behind.

World Merit organised Merit360, a program of individuals aged 18 – 35 years to increase their skills as leaders and influencers developing a strategy of action to support reaching the SDGs and presenting these to the United Nations as well as implementation in communities around the world.

Include Me TOO’s vision is a disability friendly, inclusive safe society for all and SDGs can support this to become a reality particularly if disabled persons views and contributions are taken into account.

Include Me TOO are delighted to announce we are joining World Merit’s Merit360 as their official partner and during 2017 will be working in partnership to pilot a program of participation with a group of disabled young people from 4 countries to join like-minded peers in New York to develop an Action Plan to tackle the SDGs and present at United Nations.

“As an organisation World Merit prides itself in being Radically Inclusive. Our global network of over 120,000 changemakers is extremely diverse and is made up with people from all different walks of life. We are extremely proud of having Include Me TOO as an official Merit360 partner to make sure that no one of merit is left behind. Together we will reach out fullest height.”

said Marlou Hermson (World Merit – General Manager)

 

“As we make the 10th Anniversary of Convention on the Rights of Persons with Disabilities, we also celebrate it has been 10 years since we developed the Include Me TOO Charter of Rights for Disabled Children and Young People with them and for them. The standards are still relevant today reflecting the CRPD and the 17 sustainable development goals.

Disabled young people’s voices, aspirations and participation have continued to be central in all our work and we are delighted to be an Merit360 official partner working in collaboration to increase the global participation and representation of disabled young people’s contribution to SDGs ensuring disability inclusion and strengthening their voice.”

Parmi Dheensa said (Include Me TOO Founder and Executive Director)

Faith, Disability and Safeguarding National Conference

Protecting and promoting safeguarding and inclusion of disabled children and young people in faith-based and community settings

Include Me TOO have organised this conference in partnership with Strengthening Faiths Institution of  with the support from several leading organisations in this field, NSPCC, Faith Forum London, Barnardo’s FGM Centre, Respond, SCWA (Stop Child Witch Accusation), Forced Marriages Unit and (NWG) National Working Group tackling child sexual exploitation and Jeena.

Date: Wednesday 16th November 2016
Venue: NSPCC National Training Centre Leicester.
Time: 9.30am – 4.30pm

It has been 10 years since Include Me TOO with NSPCC highlighted the much needed issues of safeguarding Black, Asian and Minority Ethnic (BAME) disabled children and young people and the role of multi faith and community based settings to protect and promote the welfare of all children in our diverse communities.

The conference's purpose is to increase awareness, understanding and inclusion in regards to disabilities within our communities and challenge misinformation, negative perceptions and myths regarding disability.

The conference aims to:

  • increase cultural awareness and understanding of areas to be considered in safeguarding within our diverse communities
  • support the cultural competences of service providers and relevant professionals in regards to cultural practices, safeguarding and intervention
  • improve understanding on matters of safeguarding in relation to disabled children, young people in faith and community settings
  • facilitate change that will create more inclusive, disability friendly and safer faith and local communities for Black, Asian and minority ethnic disabled children and young people
  • develop a Faith and Disability inclusive charter for disability friendly settings

To secure a place please download and complete the booking form and either email it to im2@includemetoo.org.uk or post it to:

Include Me TOO,
Newhampton Arts Centre,
Dunkley Street,
Wolverhampton,
WV1 4AN

More information can be found by downloading the conference brochure which is available here.

Closing date for bookings is Friday 11th November 2016, places are limited.  

Callums Promise – Fun, Friendships and Adventures

Include Me TOO launched a new project Callum’s Promise which aims to increase Fun, Adventures and Friendships to disabled children and young people. The event was attended by many supporters and disability advocates which included Adam Pearson, Samantha Renke, Tanya Motie, Well Child’s Awards recipient Myles Sketchley, Sophie Walker Leader of the Women’s Equality Party  and Department of Ability founder and creative director Daniel White.

The charity aims through this project to support disabled children and their families with FAB therapy play boxes for those who have no access to specialist sensory toys as well as supporting to create lasting treasured memories through new experiences and adventures whilst still continuing to campaign for the change needed.


Film by: Cristiana Ferrauti
Music: Golden Sunrise by Josh Woodward

The campaign and project launch was hosted by Irwin Mitchell at their headquarters in London with four other partners supporting each various elements to make a real difference supporting the following promises:

Surfability provides disability friendly and adapted surfing for disabled children and young people in Swansea. Callum’s Promise is to raise funds for a second disability friendly adapted surfing board, and increase access to disabled children and young people to surfing with Surfability.

Department of Ability is a vision of Daniel White who is producing the first ever superhero comic with Superheroes disabled children and young people can relate to whilst increasing acceptance in general society. Callum’s Promise is to increase the access to Department of Ability characters and stories to all children and young people increasing friendships and disability acceptance.

Sals Shoes finds new feet for pre loved children shoes globally. Callum’s Promise has joined Sals Shoes as their disability partner to increase footwear to disabled children globally. Furthermore the charity is appealing for preloved piedro boots and similar specialist footwear to support disabled children and young people’s feet in the UK.

Parallel London delivered the largest disability inclusive family friendly public event in London this September. Callum’s Promise is to support disabled children, young people and their families involvement and attendance to future Parallel London events who live outside of London.

‘The reality is disabled children and young people have less opportunities to fun experiences, limited chances of making friends and meeting new people, and have limited opportunities to have the support they need to have their adventures.

Friendships are an important part of most of our lives and disabled children and young people want to have choices of things to do, make friends and have places to go as part of their enjoyment and wellbeing. They want a chance to have the same opportunities of fun and adventures as their non-disabled peers. Their families also want to have shared experiences of days out and socialising with others without having to experience the barriers to access, inclusion and negative attitudes and assumptions regarding disabilities

We are looking forward to working with our amazing partners and anyone who wishes to join us to support and increase opportunities for fun, friendships and adventures to  disabled children and young people ensuring they too can leave a mark on this world’.

Parmi Dheensa (Include Me TOO Founder and Executive)

 

 Background:

The charity’s Fun, Adventures and Friendships programme is a result of disabled children and young people wanting to take part to support a promise made by the founder of Include Me TOO to her disabled son Callum of a life full of fun, adventure and friendships which is shared throughout the charity’s work.

Disabled children and young people took part in several fundraising challenges to increase opportunities to fun and friendships for their peers during this summer 2016.

The first challenge they took part in was their first surfing adventure with Surfablity who are able to also accommodate wheelchair users.

The second part of the challenges took place in the West Midlands where they completed Abseiling, Tobogganing and Canoeing.

The donating page is now available with a film showcasing these children’s achievements to help Include Me TOO’s Callum’s Promise to increase disabled children and young people’s experience to fun and adventures by accessing such facilities.

Meet AJ Joshi – Our new Ambassador!

Include Me TOO are proud to announce that AJ Joshi has become our latest ambassador to support Include Me TOO joining Apache Indian and Chris Holmes MBE.

Statement:

“I am truly honoured to be an International Ambassador of this passionate and determined charity Include Me TOO making a real difference to many lives. The charity has many inspiring stories and is unique in that it has been developed from day one by disabled children, young people and their families from diverse communities with limited resources but using many creative approaches and has a clear vision of disability equality and inclusion.

Children are extremely close to my heart and I’ve always supported organisations helping children attain better opportunities, Include me too are driving that objective forward no matter what barriers they may face

I am looking forward to supporting Include Me TOO as an Ambassador in the new chapter of the charity here in the UK and internationally. I am particularly inspired by the charity’s new campaign and granting programme which is a promise made from the charity’s founder to her disabled son Callum. This promise the charity aims to fulfil increasing opportunities for fun, friendships and adventures to disabled children and young people. There are many initiatives being planned and I am looking forward to the journey ahead, working with the charity to increase its profile and reach whilst Include Me TOO continues to help change lives for a brighter future. ”

Bio:

AJ Joshi is a an entrepreneur and a philanthropist who is an Ambassador for Include Me TOO a charity supporting the rights of disabled children, young people and their families. At 16 years old and whilst at college Joshi launched his first company selling mobile phone accessories online. In November 2001, Joshi launched MajorFm.com with a friend, one of UK’s first internet radio stations. He went on to win Best Radio Station at the People’s Choice Awards. He was selected over Capital Fm, Choice Fm and BBC 1Xtra. In 2007 majorfm.com was nominated as the best website for the Kickers Urban Music Awards UK. In January 2004 he launched UKRecordShop.com with another friend. The same year UKRecordShop.com was nominated UK’s largest independent music store.

In 2000, at the age of 21 Joshi founded The Secret Network, better known later as TSN.[8] In 2012 Joshi co-founded Incipio Academy.[2] It is an online educational network and live events company for personal development and alternative education. In Incipio Academy people can take online courses and improve their personal and professional skills.

In 2012 Joshi founded the One Wish Foundation which focuses on children displaced against their will from normal society. It includes children of war, orphans and children from broken families. In 2013 Joshi co-founded Sivvr.[10] It is a creative agency and app development company based in London, Los Angeles and San Francisco.

In 2015 Joshi founded Valens, a health care and supplement company based in London & Los Angeles. In the same year he founded ScopeForGood.org along with friends. It is an initiative driven by Periscope broadcasting live events for charitable causes.

Dear Callum, I write this letter knowing you will never read it…

Dear Callum,

I write this letter knowing you will never read it. however I am hoping the sentiments in this letter will travel through time and space and in the hearts and minds of other families who may find themselves in the circumstances we found ourselves experiencing 16 years ago today on 2nd October 1999.

Callum you are aged 16 now and I can’t believe how blessed I am that you are here with me, my precious son, my patient teacher. From the day you were born (three months early, Mr Inquisitive!)  you showed so much strength and four months later you were not strong enough and things became difficult for you and you stopped breathing. You held on fighting as I heard you hold on to your last breath! I cannot imagine how frightened you must have been as machines were surrounding you and wires inserted into you. The doctors told us you may not survive and if you did your life would be very different. As you slowly began to breathe again and gain strength, I took a deep breath and leap of faith as it felt as though I was on a parallel universe with you as it all felt so very surreal, we were about to enter an unknown world with a new destination.

Callum I learnt very early that your milestones would be at your own pace and to enjoy and hold on to all your moments however big and small. I remember you hugged me for the first time around the age of three. We were told you would not be able to walk however we persevered and one day you got up and walked a few paces. You are registered blind but yet you know how to find a kitchen, get round furniture even when you are somewhere not familiar.

One of the funniest moments I remember is when I went to your parents evening and you were around 5 years old and your teachers told me how you had ever so gently kissed Holly on her cheek and they were not sure how I would take this as it may not be culturally acceptable. I responded and said it is okay Callum can kiss as many girls as he wishes as long as they do not mind. Your big brother was puzzled as I told him that rule did not apply to him until he was 25 years old!

Callum you have a beautiful personality and we will carry on doing things differently to ensure you live your life to the fullest. I am proud of you and your brother you both are my everything. Our bond is strong, our love is immeasurable and your life  journey is remarkable. I will always be here for you, as today 16 years ago you introduced a new world to me and it was scary at first.

Everything was quite overwhelming, juggling appointments, therapies, meeting different professionals, trying to understand diagnosis, understanding jargon. Being told your brain was damaged and this would determine what you would and could not do. One of the doctors told me that in some cases the scans can portray a different picture and look quite serious, however he had been surprised to see what some patients were able to do contrary to the images of their brain. At that moment I held on to those words and knew you would surprise us.

We have learnt so much together both you, your brother and I and through our love and faith and other families we have met we learnt to be resilient and never to think anything is impossible. Life is about moments and we have had fun making them, enjoying them, both you and your brother’s laughter are priceless!

I am so very grateful to be your mother, as your courage, strength, laughter and gentle loving nature makes each day extraordinary. Our community of disabled children, young people and families is growing and our Love and Faith is Strengthened as we gain more support, awareness and understanding.

By sharing your story and other’s stories we hope collectively we can encourage as many people as possible to support us in increasing disability awareness, support, understanding and inclusion.

I will also stand up for disability rights and break down barriers and attitudes for a better tomorrow for our disabled loved ones. Times will get hard and we will dust ourselves off and try again and build our strengths from all the good times shared, each achievement small or large, each smile making sure we smile even brighter.

Every child needs a champion, someone who never gives up on them who understands them and insists they become the best they can possibly be. Callum you are my champion, you have never give up on me trying to make ripples for change, you make me proud and a better person.

‘Motherhood is about raising and celebrating the child you have not the child you thought you would have. It’s about  understanding that he is exactly the person he is supposed to be and if you are lucky he might be the teacher who turns you into the person you are supposed to be’.  –  Joan Ryan

Thank you Callum as I have been so blessed to call you my son, you have taught me so much and allowed me to see so much through your big beautiful eyes, your smile, your innocence. your compassion and trust. I will always be here to support your voice, hold your hand through your life’s adventures and your journey ahead.

Love you to the moon, universe and beyond.

Mum xxx

Parmi Dheensa

Callum enjoyed
attending his first ever prom night and had a lovely evening with all his
friends.

Include Me TOO
were finalists for the largest national awards in the UK. The National Diversity
Awards recieved 20,000 nominations and hosted a fabulous evening in Liverpool
and we WON the Community Organisation Award for Age. Huge hugs were shared the next day with
Callum who inspired Include Me TOO. Thank you to all the
families, volunteers, supporters and the team who are the centre and foundation
of Include Me TOO!

One smile at a time, changing the world to a disability friendly reality …

Over the last 10 years Callum taught me how to step
up and hold his hand as he shares his world with me. His world is extraordinary
full of strength, hope, love, possibilities, compassion and real belief
anything is possible.  His smile is beautiful and I will do anything to
ensure he always smiles and I continue to pray the world, the universe and even
you smile back. 

I learn more from Callum as each year passes. We
adore him and his gentle, kind and loving nature. My angel, my hero, my
gorgeous little boy, (who is growing up very fast). 

Callum may not communicate verbally and I know and
accept he will never have a conversation with me as his development is very
delayed, and even though he is going to be 16 years old next week, his
understanding & development is less than a 2 year old. But instead of what if’s
and getting upset, we celebrate each day as new possibilities and are grateful
for each moment we share as a family.

Callum may not communicate verbally but he
communicates and explores and experiences the world differently.  A world ‘normal’ to him,
we as a family have embraced. The pace is slow (much welcomed in this busy
world) his expressions and gestures beautiful, pure and innocent. His smile
priceless. His journey in life is different from his ever supportive loving
older brother, however as a family we accept this and feel blessed with the
path life has taken us. We have met the most amazing individuals and families
within our disability community. 

I love talking to Callum about ideas to how we can
make a difference supporting disabled children’s rights and aspirations. He
gets so excited and leans in for a hug and shares his beaming smile and I know
he is giving me his approval. Callum loves to have people talk to him not at
him, he listens carefully and will communicate back via his unique sounds he
makes and there are several.

I made Callum a promise years ago and we want to
make that promise of fun, adventure and friendships to reach all disabled
children and families. 

We started this blog of Callum’s journey a year ago
and our determination and commitment to the cause of disability awareness, understanding
& respect has strengthened more than ever. 

Sharing smiles, laughter and perfect moments are
priceless, as there are times admittedly when life is tough, challenges and
barriers become exhausting and when Callum is poorly due to epileptic seizures
it make you feel helpless and is extremely upsetting. 

It is the love, hope, laughter shared as a family
which keeps us strong.

We have been on a mission to change the world ‘One Smile
at a Time’. 

‘Callum how incredible
you are and how blessed are we to be sharing your journey on a personal level,
as well as through the vision of Include Me TOO, the charity you inspired to be
set up’.

We were delighted the
hard work of the charity Include Me TOO and the real difference it makes in the
community with families we support, which is being recognised, locally and nationally. We took several
families to meet with the Prime Minister and Samantha Cameron at No.10 Downing
Street. Further smiles were shared as the families met with Paddington Bear.

Furthermore we organised
the first National awards in
March to celebrate disabled children, young people and their families’
journeys and achievements, and each smile was truly priceless. We are meeting
many families who are sharing a similar journey like us and we very much
welcome them as our extended family, as we continue to hold Callum’s hand
meeting his peers and sharing fun, adventures and friendships.

Please join us and
support us to increase the magic of a SMILE through increasing disability
inclusion, awareness and understanding.  

Disabled children are equally entitled to a exciting
& brilliant future, be part of the change… 

Parmi Dheensa

www.callumspromise.com
www.includemetoo.org.uk

@callumspromise
@includemetoo

Have you ever seen a wheelchair on a sleigh? – Callum’s Christmas Wish

A Christmas adventure to the North Pole, this really happened, never give up hope, wishes come true …

image

Two years ago a Christmas promise I made to Callum came true. It was a whispered wish and the way it was granted felt as though God, the universe, angels, whatever you believe in had heard us.

It all began on the way back from our summer adventures. As I have promised Callum a life full of love, adventures and friendships…

It had taken many years and Callum had finally swam with the dolphins that summer and we were so excited we had completed one of our goals. On our journey home to the UK I reminisced with Callum over our holiday and all the adventures big and small we have had. Callum placed his head on my shoulders as I realised we had not planned in our list of adventures to go to the North Pole and meet Santa. I cuddled him and whispered the wish and thought it will take a lot of planning and saving up again but it would be such a wonderful experience and great adventure for my Callum.

Two months later I received a call from Callum’s school nurse Chris.

Chris started to say ‘Hi Parmi, I have some exciting news. I know Callum  has a passport as you went on holiday recently. We have just been contacted by ‘When You Wish upon a Star’ and they asked if we have any children who would be able to join them as they have a few places left. Callum has a life threatening condition with epilepsy and other needs and fits their criteria but it’s in two weeks time. How would you and Callum like to go to Lapland!’

My eyes filled up, I had to sit down, I had to take a deep breath as this was so unreal, more to the point this was truly a miracle!

I explained to Chris how I was finding this news overwhelming, as I had only promised Callum to one day take him to Lapland and I had not yet shared that promise with anyone else. I was in tears full of thanks and joy as this was amazing for my Callum.

My family felt so very blessed as faith, hope and love have given us so much strength and belief in the past. With this wonderful opportunity we felt as though we were given a huge hug to reassure us not to ever give up and everything we believed in for Callum can happen.

The ‘When You Wish Upon a Star’ team were fantastic. It was a very full day starting early at the airport, the staff and volunteers could not do enough for all the children and their families. There were clowns, magicians, celebrities all ensuring the children were entertained and had a experience of a lifetime. Many of the children had terminal illnesses or life limiting conditions.

Callum met Richard Whitehead 2012 200 metres  gold medallist paralympian,, we marvelled as he showed his running blades, like a superhero, such a great role model. Richard was lovely he even helped pull Callum’s sleigh (which had his wheelchair placed onto it), once we were in Lapland and everyone was so helpful.image

Arriving in Lapland felt as though we had just landed in Narnia, very cold but very beautiful. There was so much that was packed in one day. Families could enjoy snowboarding, snow mobiles, getting warm under huge Tepee’s which hosted open camp fire and warm marsh mellows, hot chocolate and sausages, going on sleighs driven by either reindeers or huskies, and as it began to get dark a fireworks display.

Callum had an amazing time and then it was time to have Christmas dinner and meet Santa.image

Callum also had the chance to meet Rudolph the Reindeer, he loves animals and I forgot to mention he loved the huskies ride as our sleigh was pulled very quickly by the huskies, Lots of vocal displays of his delight as well as laughter.

image

Next we all went to the Arctic Circle, where we visited Santa’s post office and met the largest snowman we had ever seen.

This blog message really is never give up hope and lovely surprises do happen when you don’t expect them too. My greatest adventure to date has been as a mother to my two boys each blessing me with their uniqueness and blessing my life with priceless moments.

 Having a disabled child does not mean we do not have the same wishes and aspirations as other families who do not have a disabled child. Yes our lives are different we adapt and find solutions to everyday things to suit our child’s and family’s needs. My family feel very grateful the love and support we have received and the beautiful surprises and opportunities life gives us, such as Callum’s visit to North Pole to meet Santa. Wow, my son’s amazing journey which I am privileged to share took us to the North Pole. Thank you When You Wish Upon a Star for these priceless moments.image

I saw this post recently and this summarises my Callum.

’ Don’t just see my legs not running. Don’t just see my hands not working, Don’t just see my mouth not talking, These broken pieces are not me,  See instead the light in my eyes. See instead my loving soul. See instead my thinking mind. These inner pieces are the real me’.

Every day is a gift enjoy your precious times, not just in this festive season, but every chance you get.

I pray Callum’s life is always full of adventure, friendships and love and I wish this for every disabled child and person. Wouldn’t it be fantastic if this wish was granted too?.

Season greetings to you all and thank you for reading, sharing and getting behind our journey Callum’s Promise  xx 

Please support us to increase disability awareness, understanding and acceptance to build a disability friendly rights respecting society.

– Parmi Dheensa

The charity Callum has inspired Include Me TOO are hosting the first ever National Inspirational Awards for Disabled Children, Young People and their Families, please share this and attend and click on to this link for more information includemetoo.org.uk/awards

A Perfect Day – Having a disabled child does not mean…

Having a disabled child does not mean you do not also share perfect days. I celebrate each day with my children no matter how hard situations become particularly as Callum’s needs grow and he has grown up fast into a beautiful 15 year old loving son and younger brother. I refuse to let the additional life challenges and barriers experienced through having disabled child bring me and my family down. We focus on our positive experiences and enjoy our precious family moments which are priceless memories shared. Perfect days and moments strengthen our hope and faith. 

What is a perfect day? Recently we attended a family wedding yes a Big Indian Wedding and I was so relieved that Callum was well enough to attend. There have been many family occasions where Callum has not been well to attend as he has or is recovering from an episode of epileptic seizures. 

On the Friday evening prior to the wedding day Callum’s hands and feet were clammy and we did not attend my nephew’s pre-wedding party. 

I thought best to be cautious as I hoped he would be well for the following day of the Wedding. I looked at his new blue trousers and waistcoat with his stripped shirt and matching blue tie and hoped he would be well to attend and enjoy the celebrations with all the family as we have missed so many celebrations due to Callum being unwell.

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Thankfully Callum was great on the morning of the wedding he was very excited and as our weddings are such long days we were going to join our extended family at the reception. 

We planned to arrive earlier to settle Callum, in the new environment as he is visually impaired and needs to adjust to changes. Planning is crucial as is arriving early which gives me an opportunity to familiarise myself with disability access in the building. There were a few stairs and with both his brother and my support we were able to assist Callum. My highlight was the disabled toilets which were great as they were clean, spacious and practical. 

My extended family were amazing as always, never judging us for missing occasions or family gatherings due to Callum being unwell or due to unpractical logistics. There are always the exchanging of lots of hugs and we are always made welcome as they accept and understand Callum’s additional needs and the way Callum expresses himself as he can be very vocal. I was delighted to see Callum enjoying the music he was going back and forth in his seat at the table to the beat of the music. With support from family Callum danced on the dance floor, sharing his dance moves. Callum does use a wheelchair however I continue to try to keep him as mobile as possible, he can walk short distances. I have to lead him by placing his left hand on my right arm helping him navigate his way around places. Callum is very aware of new spaces and places and is very cautious but always willing to explore. I find myself saying to Callum, ‘Trust me hon’ and he knows he is safe as he holds my arm and at times (when he needs more assurance) both my hands as I lead him to walk on different ground surfaces or down a small set of stairs.

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Callum needs all his personal care needs supported including feeding and drinking. Family were there to assist at this celebratory family occasion and I smiled as strangers exchanged smiles with Callum and I.  Fortunately Callum loves his food and music, and during Indian weddings there are plenty of both, a great combination for a Perfect Day for Callum, let alone the beautiful Bride and Bridegroom whose day was truly prefect. 

I feel so much joy knowing Callum is aware he is loved, he is very innocent, trusting and loving. I continue to pray he will always be loved and safe as every parent I worry what will happen when I am not there.

Our perfect days admittedly warrant a lot of preparation but I continue to count our blessings as a family as we continue to live as ‘normal’ a life as possible.  

Last week we had a further blessing which has made us more determined than ever before to increase disability awareness and understanding. I am Callum’s mother, his advocate, his voice as he holds my hand and guides me on his life journey. I was overwhelmed last week at the GG2 Leadership Awards where I was privileged to have won the Inspire Award. Coincidently the category was Inspire and Callum is and will always remain my greatest inspiration and my teacher, the reality is my son was the youngest winner that evening at Park Plaza in London, as he was the true recipient of this award. I will never give up and will continue to support the vision my son Callum has inspired a Disability Friendly world where everyone is included and valued. 

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Winning the award means my dearest Callum, your message is being heard!  A perfect day is when we share our children’s happiness and smiles and where disability is not a stigma or barrier but where it is embraced and accepted.

– Parmi Dheensa

callumspromise.com

A Diwali Wish

Every child should be given the chance to grab life and the many opportunities available. However for many of us we have huge mountains to climb with our disabled children as we face continuous barriers and have endless challenges on clearing a path for our disabled child to belong in society, to belong in our communities, to be valued so they can live a full life and enjoy friendships, have a social life, a job, go to college, have their dreams and aspirations supported.

I meet so many families of disabled children and those whose children are now young adults struggling to stay optimistic about their child’s future, holding on to hope and their faith.

I promised my son Callum the world would become more understanding and accept disabilities. However in our own communities there is still an uncaring attitude due to a lack of disability awareness and a lack of real empathy to make real changes. Many disabled children and families in our communities have shared with me how negative their community can be towards them and their disabled child. There have been times when I have experienced the ignorance of the community as people stare at Callum, comment how it must be our karma! Furthermore commenting on how hard it must be looking after Callum and giving us pitiful glances. It is hard for them to understand this might not be part of their normal life but it is part of
ours just our ‘normal’ is different and full of adventure. For instance the meticulous preparations we consider to do everyday things go shopping, days out and the priceless beautiful moments as Callum jumps up in glee, expressing his contentment through his huge smiles, hugs, clapping hands and becoming excitably vocal. When he is vocal and expressing his joy, we smile as I always say it’s Callum’s way of saying ‘Hey everybody I am here’, especially when we go out to eat.

Our disabled children grow into disabled adults and many families face having their grown child at home without any real support and this impacts on the whole family causing isolation and so much stress.

This can be made so much easier if we all started talking about disability and developing local support systems for all families of disabled children and young people. I share Callum’s journey to help increase awareness and to be honest I too am anxious about the future, as his needs continue to grow. I always try to stay optimistic and I love my son Callum so dearly I want him to not be invisible, I want him to live a full life of adventures, friendships and I want this for every disabled child, young person and their families. We cannot do this in isolation we need you all to support this to happen.

My plea is to please join us and become part of the change to create a disability friendly society. Be a ripple for change so we can be united and send the ripples far and wide.

In a time of many festivities, particularly where the Asian community celebrate ‘Festival of Light’ if you are celebrating please light a diva and pledge to become part of the change to increase disability awareness and understanding.

It would be great if you can share with us how many families with disabled children you see at your local Mandir or Gurdwara and please go over and say hello.

Our Diwali Wish is to try to ensure every disabled child’s light can shine brightly and they should not be denied opportunities and choices because of their disability. They have dreams and goals please share this and help us to shine a positive light regarding disability breaking down the stigmas and barriers together as a community, as a society. Please share our Diwali wish so we can ensure a brighter future of possibilities for disabled children and their families.

Wishing all families a Happy Diwali full of blessings – Parmi Dheensa

My Son’s Journey – A New Beginning, Challenges and Hope

I have met so many single mothers of disabled children from all community backgrounds, religions, cultures. We have one thing in common trying to do the best for our children. I salute them all and reach my hand out to them in admiration and friendship.

 I have also met many parents who are together and have a disabled child and they  can often feel alone in their relationships and feel as they too are a single parent juggling the various appointments they attend. Meeting so many professionals, trying to learn new concepts and approaches to meet their child’s individual and unique needs, a range of assessments and tests the list can feel endless for most of us.

 When my marriage ended it felt so surreal. Never in my wildest dreams did I ever think I would find myself as a single mother of a two year old and 7 month old (who had a range of additional needs). I remember moving into my own house for the first time getting my first mortgage, the removal men had dropped of the furniture and I sat in our new lounge on my sofa with my mother who had come over to help (she had asked me to move in with her but I said I had to start this chapter with my children in a home of our own). However that afternoon sitting next to my mother the enormity of the huge life change was sinking in ‘Oh what have I done, can I really do this and take on this responsibility on my own, the house, the bills, drop children off at child minders, after school clubs and work full time?’ I asked her. She then said remember whose daughter you are. My mother raised four children on her own when my father passed away. I was the eldest aged 13 years with siblings aged 12 years 10 years and 6 years. My mother did not speak English, had never paid a bill as my father always did. She raised her four children the best she could I can never thank her enough for all she did for us. Surely I could do this, I told myself, as my mother had many barriers whilst I had a good English education, a career to still continue with and family and friends who lived nearby.

We had started a new chapter in our life full of possibilities. In 2003 we went to America to visit other members of the family, whilst there on a California street I took a photo of Callum as he leapt of the ground with his feet of the floor huge smile, arms out wide and eyes shining bright. When I saw the photo, I saw how much my son wanted to embrace life, grab every opportunity and live life to the full. This is when I decided to step up and be my son’s champion to make it happen. At the time I did not realise that he all the time was and is my Champion along with his wonderful older brother, inspiring me, teaching me and I am so grateful to be their mother.

When I returned to England my youngest son, full of energy and life, seemed to propel me forward and was the inspiration of the charity I founded Include Me TOO.

I recognised opportunities and choices would be limited for him, something had to change. I accepted there would be challenges and barriers ahead for us due to his additional needs but that did not mean we would not find solutions and overcome them.

I already had been along two very different journeys with my two children. I had no difficulty accessing both full-time childcare and eventually after-school care for my eldest son Cairen. Childcare meant I could continue working full time and support my family. I knew Cairen was in a safe secure environment amongst his peers, benefiting from social activities, gaining new skills and confidence.

I did not hesitate in accessing childcare for my youngest son Callum  as I believed this would have a positive impact on him too, meeting other children and enjoying a range of activities..

I never had difficulty in accessing childcare until Callum reached two years old and his delayed development was more apparent as were his additional needs. He was not able to interact with his peers and with younger children his nursery placement was judged as unsuitable by staff and other professionals involved. My child’s ‘special needs’ meant it was becoming more obvious he would need one to one support in a suitable nursery environment. However I found nurseries did not have the extra staff to commit to this level of support which Callum would need.

I had begun a journey, which would lead me to experience frustration, experience discriminative practices, experience organisations and individuals sheer ignorance regarding disabilities.

The reality and choice I faced were the additional cost to cover a support worker if I wished to have him access childcare in a nursery.

Over school holidays the average cost for a child 5 days a week would be £100 however for a Callum to support his additional needs 5 days a week would be £100 plus an average of £250 per week additional cost for the one to one support. There was no funding to cover this and as a parent I was expected to pay this.

(At this point I wish to share with you 15 years on there is still extremely limited childcare which provides quality and affordability for disabled children and their families. Currently there is a government enquiry into this).

Even though the journey so far has had its’ fair share of trials and tribulations, I was aware that there would be more to come. My youngest son Callum, inevitably, would face many more challenges and barriers due to his additional needs

Callum is affectionate and fun. He expresses himself through his facial and body language also vocalising. He laughs, jumps up and down and claps his hands when he is  happy or excited which is most of the time! All his personal care needs have to be supported, this includes feeding, drinking, washing, cleaning teeth, changing pads etc…

Due to having Cerebral Visual Impairment, it means he can’t always understand the things he wants to see. Callum can walk short distances and has a wheelchair but we are always encouraging him to walk as much as he can.

When I looked into my little star Callum’s eyes I know that there’s no differences between him and another child. He offers the same warmth, the same love, requires the same comforting, the same reassurance, shares in the same laughter and play, wants to learn and embrace the same life. My son is the same as any other child, but as with so many other disabled children will experience being denied the same opportunities because of his ‘additional needs’. How could this be right?

I had to get actively involved in the process to ensure all disabled children and young people’s RIGHTS were recognised and respected.

 Callum inspired me to reach out to other families with disabled children to make sure they get the best out of life to. I realised I could not do this my own and after meeting with other families with disabled children and colleagues who had disabled children we organised community outreach events. My aim was even if we helped one family that was still one family more than when we started. We delivered information stalls delivered speeches about disability to increase awareness and met parents and carers of disabled children at local Gurdwara’s, Mandir’s, Mosques and African and Caribbean churches. All the time I shared Callum’s Story citing ‘Treat other the way you would wish to be treated’ So many families wanted to share their experiences with us and they wanted support, information and better services. 

We developed our first family support network and more and more families carried on contacting us and services providers wanted our help to. This is when I decided to resign from my job as I needed to do more. Callum gave me the strength and courage to make that huge decision as how can we change the process unless we actively get involved. Include Me TOO soon became a national charity as more and more families got involved as we supported disabled children and young people to have a voice too.

We supported disabled children and young people to develop the 10 Standards of the National Include Me TOO Charter of Rights. Over 60 national organisations including the Prime Minister and government departments endorsed and signed up to the charter. 

We arranged for disabled children and young people to go to Number 10 Downing Street and talk directly to the Prime Minister’s advisors about their charter. My eldest son Cairen attended with his brother’s disabled peers and was representing other siblings of disabled children on the day. I was so proud of him, I knew how proud Callum was of him too. Callum quietly smiling knowing his brother was supporting him to make sure his mark was being left in this world alongside his peers.

You may have heard the quote ‘Meeting one autistic child is just one autistic child you have met as they are so different’. The same truth is meet one disabled child or family is just one of so many.

My mother tells me so many times how proud she is of Callum, Cairen and me, our family and friends tell us they think we are amazing. I can tell you we are no more amazing then so many of the other families and disabled children we have had the pleasure of meeting, supporting, befriending and laughing with. There are so many stories, aspirations and incredible journeys to be shared and celebrated from each of them.

I am often asked how I cope and like many families my focus and energy was to support my children to ensure their childhood was full of precious fun memories building a strong foundation.

It was essential from the outset to ensure Callum would be surrounded by positivity and every moment of his precious life appreciated as blessings. It does get hard that is true, what gives me strength is the moments that take my breath away as I see my children are happy.

Callum’s achievements you see are not small they are remarkable just like him. As he leads me on his life journey I continue to hold his hand I will certainly never let go and will forever keep Callum’s Promise!  A life full of Love, Friendships and Adventures.

Parmi Dheensa

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Moment of Inspiration my beautiful son Callum.

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Callum attended the House of Commons in 2007 with other disabled children and families and he met many Ministers including Sir Ming Campbell the Liberal Democrat  leader at the time. (Aww I can’t believe how time passes by and I remember everyone must have heard Callum he was happy and very vocal ensuring everyone knew that he and his friends where in the building!)

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2009 Cairen at the age of 12 years attended No 10 with several of our disabled children and young people to discuss their rights. Cairen  representing Callum, his little brother determined the rights of all disabled children are recognised.

My Son’s Journey – The Epilepsy Warrior

This week has been Epilepsy Awareness Week and I am going to share a part of Callum’s journey which has a constant presence in his life. However we do not allow our unwelcome visitor Epilepsy to take over our lives although everything seems to cease upon Epilepsy’s visit, whilst we support our warrior Callum.

There are times when it takes every part of my being to hold on to my faith as I find myself asking how can it be right after everything my son Callum has been through? These times I am referring to are when he has his epilepsy episodes. Watching my son have a epilepsy seizure is so very  painful, you watch your child with feelings of total helplessness as they suffer during a seizure. Callum is my gorgeous angel and when he has his seizures he is a little Warrior trying to get through his battle of clusters of seizures bombarding him.

I have been told (as Callum is non verbal is not able to tell me) that people who have been able to describe how it feels just before a seizure have described their different experiences and the types of warnings and auras they feel. These range from a raising feeling in the stomach, getting a unusual smell and taste, a sudden intense feeling of fear or joy and clammy hands and feet.

When Callum was little he would have absences, this is where a person becomes unconscious for a short time, they can look as those they are staring and look blank.

As Callum has grown his seizures have changed too, When he is due to have epilepsy seizures his signs are that his hands and feet are usually clammy, he will be up all night being vocal and just not wanting to sleep, does not want to eat as much as he usually does (Callum does love his food!). Just before he is about to have a seizure he becomes very unsettled starts bouncing up and down where he is seated and may get up wander around, come over to me and hug me holding on and letting go appearing a little confused. Then Epiliepsy, his unwelcome visitor arrives, you know this as he shrieks out and collapses becomes rigid and convulses (jerking and shaking movements).

He looks terrified when it happens and to be honest each time inside myself, I hide the terror I am feeling for him. As I see my lovely boy suffering I have to each time gather all of my strength for the both of us, remain calm and reassure him through these Epileptic episodes. Each seizure differs in the length of time he has a convulsion and as if one seizure is not enough he can have several in a day. Callum has even had to battle through over 20 seizures in 24 hours once!

He is exhausted when he has clusters of seizures over several days ,during which I stay with him constantly through day and night, ensuring he is safe. I make sure when he has seizures he does not hurt himself as he collapses. I have got used to not sleeping over many nights as I have to remain vigilant. 

Callum has severe learning disabilities, vision impairment, dyspraxia and has no verbal communication, hence to keep my precious little star calm I speak to him and stroke his face and I run my fingers through his hair as I am sure his head aches after the seizures, Followed with lots of kisses and staying focused as I cannot get upset in front of him as Callum is so courageous.

I can honestly share with you all that I have only seen Callum cry twice both times huge pearl size tears just a couple falling on his beautiful cheeks. He is so very brave and I have to stand just as strong and brave beside him.

The recovery can take days as first he can be very lethargic not eating and drinking. Once he did not eat or drink for 72 hours despite all efforts. I did not want him to be tube fed as he had been through enough. We brought Complan a nutrient rich meal replacement and mixed it with milk and fed Callum the Complan with a mouth syringe. It took over a hour to feed Callum but it worked. I still do this to this day when he is in and out of consciousness after seizures and is recovering.

I arranged an appointment to see a private consultant over 6 years ago regarding Callum’s seizures and was shocked to learn some children he has seen have 50 plus seizures in a day!

This certainly put our circumstances into perspective as I thought about all those children and their parents hardly having time to breathe. My heart went out to them. I may not have met them but I felt I knew them. As families, we adjust and adapt our lives around our disabled children. Our lives are different, we have our own family way of life trying to maintain our sense of normality  which includes having sleepless nights, cancelling plans, appointments, visits when our child has had a seizure as well as juggling work and responsibilities. We hope and wait for the seizures to cease our shared unwelcome visitor the notorious Epilepsy to stop being present in our children’s lives.

That’s why I felt I knew the other families as they are part of my son’s, my family’s community our disability community. We have our own language, our own understanding, our own ‘normal’.

Our ‘normal’. I have many times gone to work with less then 4 hours sleep per night over 3 days (during when he is due to have epilepsy and after)

My sleeping routine is ‘normal’, as I check on Callum each night literally like clockwork. Checking Callum is okay a hour after he is put into bed then at 11pm, 1am and 4am to check he is okay, his bed sheets are still on him and he does not need changing (all Callum’s personal care needs need supporting).

Each time I smile as I see him sleeping peacefully, safe, embraced with all the love he knows he is surrounded with. Everything is good when my son Callum does not have to be the Epilepsy Warrior and he is well.

 

A picture of our last day on holiday, Callum was already starting to not feel well and on the journey home he had 2 seizures on the plane and thankfully he was safe and the staff were fantastic. This is our normal life.

Parmi Dheensa

 Please do find out more about epilepsy as there is a general lack of awareness about epilepsy. It varies and effects people in different ways. Find out what you can do to help and get talking to others help raise awareness! Here are some links:

www.epilepsysociety.org.uk

https://www.epilepsy.org.uk/

My Son’s Journey – His Battle Through His First Year

My son Callum was born on 2nd May 1999 at just 28 weeks. He was in the pre-mature babies unit for several months. I remember the doctors decided there was no time to give me any pain relief as Callum was struggling and they could not wait. I remember screaming as they cut me to help my son into this world. I remember wanting to see him and seeing nurses and doctors rushing him out the room. I remember looking at his dad and asking if our son was okay. I remember the terrified helpless look in his eyes; I remember how unreal it felt for us both.

Everything had been so simple with my eldest son, an easy pregnancy and birth. Nothing prepares any parent for a child when they are born so early.

I was in hospital so many times over the next few years that his older brother who was two years old called me Dr Parmi.

Callum came home in August 1999 during this time he was in and out of hospital as he kept having ‘blue episodes’. Callum’s lungs were still under developed and he would go blue whilst having a bath or during feeding and seemed to be upset all the time as though he was in pain. The hospital would do checks and observe his oxygen levels in his blood stream, and once they were at the correct level we would be sent home each time, this happened on several occasions. On October 1st 1999 I woke to see my son not moving, I had checked on him not to long ago and screamed ‘No’ as I quickly scooped him up in my arms, he was so cold and stiff his dad got up with disbelief. I could just about hear what felt like his last breath, quickly we got him on the bed, dad tried to breathe in his mouth as I grabbed the phone and called 999 and got put through to someone who talked us through how to administer mouth to mouth. The ambulance arrived I held Callum in my arms, praying all the way to the hospital, as he had various equipment attached to him. We reached the hospital this time through the emergency double doors, surrounded by more doctors and nurses. The next 24 hours are a bit of a blur, I remember our consultant paediatrician coming over to us to say the next couple of hours would be crucial for Callum’s recovery, he should be okay. They warned us that due to the lack of oxygen my precious son may have seizures because the brain is in shock but these should soon stop once the brain has recovered.

I remember having to go home at 5am as the hospital staff said they would sort out a family room and we could get some things. I remember Callum in this huge room full of machines monitoring his every breath. I did not want to leave him but I also knew both me and his dad had to go back to the house full of the haunting echoes of that morning and neither of us wanted to do this on our own. We only walked in and already had decided we did not want to go upstairs to get our things, when the phone rang. The hospital told us to come quickly as Callum’s condition was deteriorating. We ran out the house, reached the hospital, and ran into the room to see my son for the first time in so much unbelievable pain he was having several seizures. Imagine seeing your precious five month old baby’s body shaking violently and feeling so useless as you cannot do anything to stop this.

Within hours which felt like seconds, our consultant paediatrician entered the room and said to us the words no parent is ready to hear. She told us if in the unlikely case Callum survives he will be severely brain damaged. The floor beneath me gave way as I took in this statement. We were devastated and what went through my mind were all the books I had read preparing for a baby, supporting the first years of your baby’s life none of which had prepared me for this. The media and society generally were so negative about disability. No matter what, my son was perfect, he was perfect no matter what he would or would not be able to do. He had to fight I would fight for him I promised I would be there no matter what.

Callum was put on a life support machine and thankfully he fought hard and pulled through. I remember the first time in hospital I met the many professionals who would support Callum, physiotherapists, sensory, vision impairment team, hearing impairment team, various consultants specialising in certain areas all trying to support Callum and his family. That’s when I realised our family journey was going to be very much different than what we had originally planned.

Callum has severe learning difficulties, dyspraxia, vision impairment, epilepsy, is non verbal and for the rest of his life all his personal care needs need to be supported. Callum is my son, my miracle, my inspiration.

Callum came home towards the end of November 1999 and was on several medications and would have several follow up assessments and tests as well as brain scans. I was looking forward to having his first Christmas at home as at one point we were looking at the real possibility of having Christmas at the hospital. A week before Christmas my marriage ended. It was an extremely painful time and many marriages come under strain under the circumstances we had gone through. For a long time I felt saddened because I had not only lost my husband, but my best friend and the father of my children. I refused to become bitter and be seen as a victim of circumstance because we had had two beautiful children together and they were precious to me; they were and always will be my world. I only wanted my ex husband to one day understand what I was and had been going through at the time and yes of course to realise the priceless treasures he had let go.

How can I explain what it is like to be a family with a disabled child? Well for us it is like we have been channeled into a different frequency where you appreciate the very simple things. Callum loves the breeze on his face, the feel of sand and grass under his feet, swimming, having baths (which I am sure he sees our bath as a miniature swimming pool just for him!), music ranging from bhangra, mainstream music including The Beatles and classical. He certainly loves his food, huge hugs and cuddles and above all his family.

I heard of a lovely belief that prior to any of us being born into this world our spirit chooses the mother, the father and the family they will be part of. I shared this with my eldest son many times I remember telling him about this belief when he was three years old.

‘Cairen how lucky we are that Callum chose us to be his family, you as his big brother and me as his mom. Callum must have seen something very special in us to choose us to hold his hand and support him in his life. He must have believed in us and believed we could be as strong and brave as him. He must have known we have so much love to give. I am so glad he chose us, we are very lucky to be his family’.

Every single day is a blessing, Every single birthday is so special. Callum had a fantastic 15th birthday and one of his latest adventures was going to Ash End Farm and meeting the horses. Many disabled children really benefit from horse therapy and the interaction, Callum certainly enjoys their company. Here are some pictures of the day. 

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– Parmi Dheensa

A mother’s promise to her son of a life full of love, friendship and adventures:

For those who know my son Callum you will be familiar with his extraordinary life journey. From the day he was born (three months too early!) he fought for his life, through his strength I grew strong; through his courage I grew more determined that he would live life to the full as much as possible; through his love I began to understand true compassion. Callum’s second name is Arjun and he is AMAZING he quietly has inspired projects and Seva (Selfless Service) promoting the RIGHTS of his disabled peers, teaching through sharing his JOURNEY increasing UNDERSTANDING of the NEEDS of disabled children and young people and their families. I am humbled and honoured to call him my son. I am his mother, his advocate, his voice as he holds my hand and guides me on his life journey. I am in awe of my angel, his mild loving patient nature, the love and beautiful smiles he blesses my life with, the direction he has led my life for the last 12 years! He is my inspiration, my teacher and I am his voice, in his journey ahead I pray I can support his dreams and aspirations, ensuring his life is full of love, laughter, adventures and friendships.

Today, I want to wish my son Callum a fantastic 15th birthday and we are really looking forward to our many new adventures and many new friendships. Callum will turn 16 next year on May 2nd, we hope to have shared this message far and wide by then.

15 Years Ago, I made a promise to my little star Callum, that his life will be filled with love, friendship and many adventures. 15 years later,  we are sharing Callum’s journey with you. Please extend your hands of friendship to Callum to strengthen our belief that people do care about disabled children and young people. 

On this page we will be sharing more into Callum’s Journey. 

Please show your support for us on Twitter at twitter.com/callumspromise and like us on Facebook

Callum has inspired the formation of the charity Include Me TOO, supporting disabled children and families, at Include Me TOO’s National Conference in 2008, His brother who is his best friend and his advocate, at the age of 11, wrote and presented a powerful message using snapshots of our family life and sharing the life journey of his little brother.