My Journey with Jake: A Memoir of Parenting and DisabilityJake is celebrating his tenth birthday. That's a remarkable feat, because at birth he was given only three years to live. Miriam Edelson is his mother, a dedicated fighter for Jake and families in similar situations. Edelson poses some tough questions: How do parents cope with a child who has special needs? Are we failing, as a society, to care for children with disabilities? Whatever happened to the federal government's promise of a "Children's Agenda"? "My Journey with Jake" works on two levels. It's a poignant memoir by a devoted mother, and a hard-hitting, well-researched look at health care for Canada's children. |
Contents
1 Maiden Voyage | 1 |
2 Hardwired for Kids | 9 |
3 Searching for Answers | 19 |
4 Jakeys Hungry | 31 |
5 Finding the Light | 41 |
6 No Heroic Measures | 53 |
7 Belleville or Bust | 63 |
8 Jake at One Year Old | 77 |
10 Sister and Brother | 111 |
11 Families Fight Back | 127 |
12 The Ethic of Care | 143 |
13 Who Will Rock My Son? | 155 |
14 Climbing the Stress Meter | 167 |
15 Balance and Surrender | 179 |
Resources for Parents | 191 |
9 Trying Again | 95 |
Other editions - View all
Common terms and phrases
able afternoon baby Belleville birth Bob Rae body brain breast breast milk breathing brother caregivers CBC radio Centre challenges child colleagues comfortable couple daycare death disabilities doctor drive Emma Emma's ethic of care facility feeding feel friends funding Gail Gatineau Hills group home head Hinda hold infants issues Jake Jake's condition Jakey Jim's keep lake Lake Ontario later Latimer lissencephaly lives look means meeting Miriam months morning mother move mucus night nurses Ontario OPSEU palliative care parents Port Elgin programs responsibility Robert Latimer says schedule seizures sense Sick Kids sleep smiles social son's speak special needs spend staff stay story suction Susie's Place talk tell therapy Thistletown tion Toronto Toronto Star tube union walk week woman wonder workers