Lilli Wilson, 9, has the rare disorder Smith-Magenis Syndrome(SMS) and like many children with special needs she takes up a lot of attention.
Lilli's parents are happy to give their daughter whatever she needs but they're asking the question, what about her brothers?
Because of Lilli’s SMS, she has sleep problems that keep her up at all hours of the evening, she’ll be incredibly insistent on getting her own way, and she’ll have prolonged explosive meltdowns that, at their best, make her impossible to reason with and, at their worst, have her running around and hitting people, usually her brothers.
“She needs constant attention whether it’s positive or negative, it doesn’t matter to her. Whether it’s being told good job for going potty or eating or if she gets yelled at for hitting her brother its all the same to her,” said Brandi.
In Lilli’s bedroom the family has installed a $17,000 ‘Safe Space’, basically a pink padded room full of soft items that Lilli can go in when she’s having self-injuring episodes.
Brandi has noticed that, while Lilli is taking up all the family’s time and energy, her brothers Sidney, 10, and Jack, 8, are suffering.
“We can't ever talk,” said older brother Sidney, sighing with exasperation. “We’ll want to have a conversation or something in the van, or do something, and she’ll just start yelling for no reason. If she’s talking to mom and dad and we start talking she’ll lose it and have a meltdown,“ said older brother Sid.
Brandi’s been to Algoma Family Services, Community Living Algoma, Algoma Public Health, Thrive, and Big Brothers and Big Sisters looking to find services that might help her sons but hasn’t really found anything.
In the United States a group called the Sibling Support Project offers ‘Sidshops’, meetups described as ‘peer support groups for school-age brothers and sisters of kids with special needs’.
Brandi would like to see something like that here.
“I want more support for the boys because they are growing up in a house that’s not typical. It would be nice if they could connect with kids that grow up in another home similar to them,” said Brandi. “Even if it's loosely organized or just every month or two it would be good to have something for kids to connect with other kids that have similar homes. I’m friends with parents whose kids have disabilities and siblings and I know a lot of people that would love something like this but I cant do it by myself. I don’t have the funds or time to set this up,” she said.
Brandi said services could help siblings of those with Autism, Down Syndrome, Fragile X, Prader-Willi, Cerebral Palsy, and a range of other disabilities.
“It would be great just to be together with other kids who understand us,” said Sid.