Four-year-old Steen Cowdell has been through a lot in his young life. After enduring a number of health scares as a newborn, Steen was diagnosed with a seizure disorder, global developmental delay and autism at age two, around the same time he began taking medication for epilepsy.
He’s been hospitalized for seizures and has also been diagnosed with sleep apnea.
“Initially, the hardest part for me was when I realized he could not talk, all he could do was grunt,” said Colleen Cowdell, a longtime Lynn Valley resident and Steen’s mom. “It’s been a whirlwind couple of years.”
One of the most immediate concerns for the family of three, which includes Cowdell’s other young son, is around sleep.
Up until 18 months ago, Steen slept in a crib, but because he can’t differentiate between night or day and is prone to sleep walking, there was the risk that he’d break the crib and possibly hurt himself. Steen moved into his mom’s room, but that didn’t help much either, according to Cowdell.
“It’s a steep learning curve and children with autism often don’t sleep. Steen has pretty much never slept. It’s been very difficult,” she said. “He’d be in my bed, kicking me and waking up and yelling and screaming.”
Recalling the protective bed enclosures that Steen would often use while in hospital, Cowdell asked her son’s occupational therapist about getting one for home use.
While an enclosure bed was then enthusiastically recommended for Steen, there was another hurdle in the way.
“I learned they cost $10,000,” said Cowdell.
But with support from the B.C. chapter of Variety – the Children’s Charity, Cowdell managed to get her son the enclosure bed.
The custom-built bed with its soft mesh enclosure has made all the difference for the time being. It prevents Steen from falling, sleep walking, or hurting himself by thrashing against something hard.
Now mom and son get a better night’s rest.
“He’s enjoying nighttime play more than he was before, and that’s amazing,” said Cowdell. “All the sides are padded – it’s almost like a little house.”
Steen’s story will be shared in greater detail when it airs on the Variety Show of Hearts telethon next week.
Although she says there’s nothing negative about a child receiving an autism diagnosis, Cowdell says she’s coming forward with her and Steen’s story because she wants other families experiencing similar situations to know there are supports and resources out there for them.
“I remember when I first started going through it, I felt so lost and so overwhelmed. Now I really like to help parents with the initial process of going through having a child with special needs. I really know for a lot of parents the cost of having a special needs child is very overwhelming,” said Cowdell.
The 55th annual Variety Show of Hearts telethon takes place next week on Feb. 18, 19 and 20. Steen’s segment will air on Thursday, Feb. 18 and Saturday, Feb. 20 on Global BC. The telethon can also be livestreamed on Global's website.
