In her new memoir, My Own Blood, published this week by Penguin Random House Canada, Calgary mom and author Ashley Bristowe paints an unflinching portrait of the divide between what children like her son Alexander require to thrive and what the government is willing to invest in caring for special-needs kids. 
In the first months of his life, Alexander was diagnosed with Kleefstra Syndrome, a rare genetic disorder. Kids with Kleefstra Syndrome exhibit a broad range of features including developmental delays, reduced intellectual capacity, frequent respiratory infections, and weakened muscle tone. As an infant, Alexander was a ?floppy? baby who suffered from a hernia and a heart murmur, and he had difficulty breathing on his own from the beginning. Bristowe says the doctors told her, ?This is a syndrome of some kind. We?ll run his DNA.?  They determined that Alexander has a genetic deletion that had recently been classified as Kleefstra Syndrome?and that he was unlikely to ever walk or talk. 
The news that Bristowe’s second child would be so unlike her neuro-typical first child was shocking. Unwilling to accept that her son wasn?t capable of more, she gave up her career as a photographer to navigate the labyrinthine bureaucracies of a government funding system that both expects too little, and invests too little, in special-needs kids. 
?Before I had Alexander, I had a very minimal understanding of people with disabilities, let alone children with disabilities, l...