Coping with a Child with Disabilities

by Linda Leigh
Categories: Annual Review
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Dealing with Devon’s severe epilepsy and developmental disabilities was challenging and exasperating for his parents Dan and Carolyn. Then when Carolyn unexpectedly became a single parent, she blinked “low battery” and wanted to shut off. But she refused to curl up and surrender.

Devon’s questionable behaviours began as young as four months old. His eyes and mouth twitched. Then he missed developmental milestones. He couldn’t sit up. He never crawled. He didn’t point or wave good-bye. And vocalization was nothing more than babbling. By age two he fought muscle-jerking contractions, stiffening of the limbs and temporary pauses in breathing.

Devon was diagnosed with Lennox-Gestaud syndrome, a rare and devastating epilepsy syndrome with multiple different types of seizures and developmental regression.

“We thought Devon would make progress with medication and his seizures would subside,” says Carolyn. “But the damage was done.” For 11 years, Carolyn and Dan provided primary care for Devon, each scaling back on their teaching careers so someone was always at home to feed him, change him, walk him, dress him, and deal with daily seizure-related issues.

Then, in 2006, Dan took sick and shortly after The Salvation Army stepped in.

Respite Care
“The Salvation Army’s respite care program was there when I needed it most,” says Carolyn. “I was exhausted and needed more help.”

Respite (RES-pit) care is short-term, temporary care provided to people with disabilities so that their family members can take a break from the daily routine of caregiving.

The Salvation Army’s London Village, which was established in 1954, is currently home to a Respite program for children and adults with intellectual disabilities.

“Respite distracts me from what I do every day,” says Carolyn. “lt gives me time to take a deep breath, think of other things, and get much-needed rest. I then return to Devon with renewed drive and determination.”

Each year, Devon, now 17, spends six different weeks in cottage six on the Village’s nine-acre property. He has his own bedroom—support staff assist with daily living and address his unique medical needs.

“Furthermore,” says Carolyn, “Devon is mentally stimulated by verbalization and watching other children, is active through outings to parks and airshows, and enjoys friendships. He thrives at respite.

“And The Salvation Army treats Devon as a person of worth,” Carolyn continues. “While he only babbles, is wheelchair-bound and has the mind of a one-year-old, the Army sees him as I do— an amazing boy who is the hardest working child I know. Respite makes Devon’s days, special, important and fun. At London Village the Army knows no handicap.”

While caring for a dependent family member can be a rewarding, life-enriching experience, it can also be overwhelming with enormous obstacles. “Respite allows me to gather strength and be all I can be for Devon,” says Carolyn. “For that I am truly grateful.”