It is said that a journey of a thousand miles starts with a step.
Part of this incredible narrative summarised by our guest, Mrs Harriet Awuah Agbenowu sheds light on the experiences of many families touched by autism around the world. Many of these voices are however silent and their stories not always told, and when told, certainly not with such adventure, depth and richness of context.
On this particular autism journey, a ticket had been purchased for Egypt, but the flight landed in Iceland.
Every preparation for the journey no longer counted and seemed completely irrelevant; clothing, language, study of the geography, culture, planned visits to tourist attractions, previous experience in Egypt etc. All irrelevant.
Everyone who has had a personal encounter with autism, special needs, learning difficulties, additional needs or any form of disability will identify with this.
Autism (Autistic Spectrum Condition) is a condition that affects social interaction, communication, interests and behaviour. The symptoms are present before three years of age, a diagnosis can be made around the age of three and has no clearly identified causes even though genetic and environmental causes are suspected.
It isn’t that Iceland is terrible. Just completely different from everything expected; hence requiring completely new learning for survival. This will require a lot of determination, an unexpectedly high level of hardwork, great resilience and a commitment to making it against all odds.
Due to no known history of autism in both families, there was no presupposition for any of the three beautiful children born to our young family to be affected in any way by autism. It was a very bitter pill to swallow indeed when both of our boys were diagnosed.
There are number of challenges which are experienced by families affected by autism and other related conditions or special needs. These include families having a limitedunderstanding of the condition, struggling to find the right educational provision, societal stigma, abandonment, isolation, loneliness, lack of information, resources, financial difficulties, discrimination, marital stress and breakdown.
In Harriet’s own words, ‘Think about the general challenges faced by an average family not dealing with disability, then multiply the stresses, needs, tiredness, anxiety and financial challenges ten times over’.
This might begin to give you a gist of what it means for a family to be managing special needs and disability. As a family, we do experience some very difficult times. During these times, holding on desperately to our faith sustains us. This makes our everyday life something of a miracle, with people constantly asking, ‘how do you do this’? My usual reply is that we take things one day at a time, trust God, hope for the very best and expect the very best. There are days when things get overwhelming, there are days when the discrimination, isolation, stigma and tiredness gets to us. On some of these days, I stop, cry it all off my chest, pray, rise to my feet again and face the world with a smile on my face, a spring in my step and a song of hope in my heart. I have learned that these emotional dips are normal and healthy so long as we move on swiftly. Life can only get better ?
Naturally, the role of a supportive and dedicated husband and the support network provided by a loving family and friends cannot be overemphasised. I strongly believe that my husband, Richard has a unique story to share from his own perspective and will do so when he is ready. I however could not have wished for a better man and friend to travel this road with.
With this understanding of the reality on the ground, our family’s greatest desire is for Sparklers Foundation to continue to provide excellent support for individuals with autism, related conditions and their families in the different ways below;• Share helpful information through our social media platforms and events.• Reduce isolation for families through social networking events.• Provide inclusive and Specialist education• Provide inclusive holidays school, clubs, play and camping opportunities for children with additional needs and their siblings.• Educate families on specific needs and support strategies.• Signpost families to appropriate services.• Provide guidance during diagnoses and school application processes.• Encourage an ethos of self-help and self-care among families.• Family Training opportunities. • Professional training and services for Schools and Healthcare services. • Online Training Courses• Helping families to create bespoke Home-Schoolingpackages with face-to-face and practical holiday sessions. • Assessment and Referral services (Diagnoses and healthcare) from August 2020• An Autism Specialist Centre • Guidance and signposting to therapeutic Interventions• Sparklers Accredited courses on Special Educational Needs and Disability. • Outreach services to help develop other centres and share good practice. • Joint Special Educational Needs and Disability Research projects with other organisations
As a family and an organisation, we encourage every individual with additional needs and their families to Aspire, Flourish and Sour; hence our motto.
We understand that the journey is a difficult one, but there are many ways of looking at every situation. To the many affected and silently suffering families out there, we say, ‘chose not to be imprisoned by your circumstances or by narrow restrictive minds which may try to influence you. Consider yourself as planted instead of buried; and allow yourself to evolve into something strong and beautiful as a result of this unexpected twist in your life. And if you would permit us to walk with you, we will be the voice which reminds you never to limit yourself or settle for less, and that the sky is just the starting point. Stay strong! Keep smiling ?
