Blaine mom helps school understand son, other kids with Down syndrome

Salim Soussi likes to celebrate friends' birthdays by singing "Happy Birthday" in four languages. At 9, he's fluent in English and Arabic and knows a little French and Spanish.

He also needs help getting dressed and is still learning to chew solid food. He has mastered showering and eating with a spoon.

Salim has Down syndrome. He's a slow learner but also cheerful and friendly. He has alopecia, so he stands out in a crowd with no hair, eyelashes or eyebrows.

He is also just himself, a boy famous for his hugs and his playful mischief (such as sneaking his mom's phone and calling people to say hi), a third-grader who loves horses, pizza, water parks, car washes, pinkie handshakes and snow tubing.

His mother, Sana Soussi, heard that her son had been left out of some classroom activities and lunch groups. There was a birthday party to which all the students were invited except Salim.

So Soussi, who lives in Blaine with her husband, Ahmed Soussi, and their five children, decided to do something about it.

On World Down Syndrome Day last month, she organized a presentation at Salim's school, DaVinci Academy of Arts and Science, a charter school in Ham Lake, to help the staff and students understand Down syndrome.

Soussi was 23 weeks pregnant when tests, prompted by unusual conditions spotted in ultrasounds, confirmed that her baby had an extra copy of his 21st chromosome, the genetic condition that causes Down syndrome.

"Me and my husband were in a lot of shock," she said. "We had dreams, like everyone else."

Health care professionals, Soussi recalled, advised her to consider terminating the pregnancy, telling her that a child with Down syndrome would bring a lot of challenges and hard work. But she decided not to terminate.

"I could feel him moving every single day inside of me," she said. "There is a human being inside of me that is moving; we talk to each other."

As a baby, Salim couldn't roll over or sit up. That's normal for Down syndrome, doctors told Soussi.

Salim clapped his hands.

"We looked at each other and we're like, 'Didn't they say he's not going to be able to understand?'" Soussi said.

That's when they knew Salim might have some surprises in store.

"He learned all his ABCs when he was 3 years old," Soussi said. "He learned his numbers up to 20 when he was 3. He learned all his colors and shapes when he was 3."

The doctors were right about the hard work, though. Soussi observed Salim's physical therapy sessions and helped him do daily exercises at home. She bought books to teach him the alphabet, painted his room different colors so he could learn their names.

She has taught Salim "everything from eating, brushing his teeth, showering, putting clothes on, shoes on, zipping the jacket. ... Even chewing food, Salim is still learning that. He was on pureed and mashed food for a long, long time. I still have to teach him how to chew. I chew my food in front of him, push his jaw to help him chew the right way."

Some days, she said, she would sit by herself and cry, thinking she could not keep it up. But she was seeing progress.

"It's challenging, it's hard, it's difficult, there's a lot of obstacles in front of you throughout the years," Soussi said. "You're working 24/7. But at the same time, you're doing this from your heart, you love to do it, you're doing it because it's coming from you to your child. It's hard, but it's amazing."

And the teaching goes both ways, she said.

"Salim taught me how to be patient, he taught me how to be happy with nothing. Now if my son is feeling good, if my kids are good, it's all good. ... If you asked anybody who knew me before, they'd say, 'Whoa, she's a completely different person. She's more energetic, she's more active, she's more happy, she's more patient, she's more helpful.'"

Other speakers included Salim's longtime pediatrician, Dr. Fadel Sakkal of Fridley, and Sarah Curfman, executive director of the Down syndrome association.

"If you have any questions about someone's condition, the best thing to do is go up to them and just ask," Curfman said, recommending a kid's book, "Just Ask! Be Different, Be Brave, Be You," by Supreme Court Justice Sonia Sotomayor.

And perhaps most powerfully, she showed a video in which friends and family members talked about Salim. Many mentioned his hugs.

"He runs to me and gives me the best, tightest, wonderful, embracing hugs I could ever have," said Salim's uncle, Haythem Soussi. "He brings joy to my life."

Down syndrome is not scary, Sana Soussi said at the assembly. It's not something "to judge or be afraid of or even make fun of. Kids with Down syndrome make amazing friends."

The event went even better than Soussi had expected. She has since been approached by parents, teachers and kids saying how impressed they were with the program. Kids have told her, "We love Salim now, we want to play with Salim now," she said.

"They are still talking about it," she said. "I dropped off my kids today, and I saw one of the ladies I haven't seen for a week. She said, 'Omigod ... it was amazing, it was powerful, I was tearing up and I've thought about you every single day.' I'm like, wow."

Kelly Zender, principal of the elementary grades at DaVinci, said the program was a hit. Students discussed Curfman's advice to just ask someone directly if you're curious about their condition. They talked about how it might be done sensitively and practiced with role playing.

The program was such a success that staff members discussed holding other similar events in the future.

"I left feeling extremely proud of our community," Zender said. "The students were so genuinely interested and wanted to learn more."