To mark Down's Syndrome Awareness Week (20-26th March) we hear the inspiring story of Craig and Pat Hartley.
Pat 74, lives with her son Craig 42, who has Down’s syndrome. Craig was born when Pat was 32. When he was born he was completely blue and was immediately whisked away for testing. It wasn't another 24 hours later until Pat was told that Craig had Down’s syndrome, but was given no information on what this meant for Craig’s future or them all as a family. As a result of Craig’s diagnosis, Pat was isolated into a separate ward, away from the expectant mothers she had become close to. All Pat could think was “how can I help Craig?”, but while the staff in the hospital were lovely they weren’t able to help her.
Pat recalls how the doctors “wrote Craig off”. Craig stayed in hospital for 6 weeks as he had no sucking reflexes. When Pat was eventually able to take Craig home, she had no information about how to properly care for Craig; she had been “left in the dark”, relying on her instincts, for example, to feed him glucose instead of sugar as the hospital had done.
As there was nowhere else to go, Pat turned to the Down’s Syndrome Association (DSA) for help, who gave her lots of advice and support. She saw the charity as her “lifeline”, the only organisation to give her “a lot of help”.
As Craig grew up, he developed a keen interest in literature. Pat recalls, “I always read to him, he preferred books to toys, he always wanted to learn”. When Craig was 5, an educational psychologist assessed him as above average for his age group.
As a teenager, Craig started writing poems. His experiences as a child inspired him to write Troubles of A Boy. Now aged 43, Craig is an accomplished writer. He has written over 100 poems, his work has been published and he continues to write.
Craig is also a successful dancer, has passed dance exams and won many competitions for tap, ballroom, old time and Latin American dancing.
As a student, Craig achieved NVQs, including Business Administration; GCSES, including English Grade C and has qualifications in Creative Writing and Desktop Publishing. When he finished college, Craig was keen to be employed. He has worked for Lancashire Constabulary, Burnley Youth Theatre and more recently Community Solutions North West as an invaluable member of their administration team.
He is a self-confessed perfectionist, who loves to read, watch films, listen to music and is driven to succeed.
Craig lives with Pat, and his sister Dawn lives locally. They all have a very close relationship and a busy life together. They go dancing, go on holidays, socialise with friends and family and going shopping. As Pat says, “we are out every day!”.
Pat thinks Craig is “remarkable”, she is “very proud of him”. She says she “couldn’t ask for a better son”.
Pat knows how important the DSA has been to her family since Craig was born. For information, support and advice from the Down’s Syndrome Association call their helpline on 0333 1212 300 or go to www.down-syndrome.org.uk
Troubles of a Boy
They cuff me and call me names
But one day I will rise to fame
The world is just a game
I’m changing into a man
There are things that I can’t do and can
At school I’m treated like a fool
To be a man you have to be cool
At night when I go to bed
I wish and wish that I was dead
When I waken up I find
I’m still going through life’s grind
Sometimes I wander from the path of life
And find myself on the path of strife.
At every step I take I fall.
But I will get to my true goal.
One Man’s Struggle
I’ll follow my heart wherever it leads
No organisation will sway me
I will stand firm, my honour uphold
Even though I am deterred by those who oppose me
I follow my river of strength
Alone, in the vast sea, engulfed in my own dreams
Will I be dashed against the rocks?
Or will I be able to defy the tide?
But I strike out regardless through the velvet darkness
One man’s struggle to face the odds.
- For more real life stories see Yours magazine, out every fortnight, on a Tuesday.