As new parents, we were completely unprepared for what we were facing.
When Erin Aleman was pregnant with her first child a few years ago, neither she nor her husband Rob had any indication there was anything wrong. “Not a single sign,” says Erin. “And as new parents, we were completely unprepared for what we were facing.”
Their son, Rhys, has microcephaly and schizencephaly, a rare birth defect that causes abnormal clefts in the brain. “He may also have cerebral palsy,” says Erin, “but we’re still in the process of getting diagnosed.” She tears up. “This is hard to go through,” she admits. “There have been a lot of highs and lows, and lots of uncertainty.”
Rhys’s condition turned their lives inside out. “We had to reorganize our lives so we could care for him,” Erin says. “Rob works nights and I work from home. We’d planned to move out of our condo after he was born but we’ve had to stay put.” She feels fortunate, however, to have options that many families don’t. “If you’re a single parent, or have few financial options, it would be devastating.”
There are other more personal challenges as well. “‘You have dreams for your child, and over time you figure out that you need to adjust them,” says Rob. “It’s hard to make sense of it all – to be a good dad and be a good husband.”
It helps that Rhys is, in Erin’s words, “an absolute dream. He’s such a cheerful and easygoing baby!” And both Erin and Rob are adamant that Early Intervention services have made the journey much more manageable. “Being able to have his therapists come to our home and have us participate in the sessions has been so helpful,” Rob says. “We see what they’re doing and we learn from them. We’d be in the dark without them.”
“Rhys is lucky to have Erin and Rob as parents,” says his physical therapist, Sarah. “They are dedicated to his success. A lot of the progress he has made is because they work with him and play with him on a daily basis, always following through with our suggestions.”
Rhys has achieved significant milestones in his two-and-a-half years. “One of our biggest goals for Rhys was to help him learn some independence,” says Erin. “He can army-crawl now, so he can get from the living room to the bedroom without having to roll his way along!” He’s also progressed from using a gait trainer to using a walker and orthotics. His physical therapist, Sarah, is working with him on making the transition from getting out of a chair. “Right now, when he’s done eating, he lets himself fall out of the chair to get down. It’s the only way he knows how to do it.” Meanwhile, his speech language and occupational therapists, Marisol and Lani, are helping him learn to eat without choking on his food.
“Rhys works through hard activities with determination and a little bit of sly avoidance,” says Lani. “He loves to use his charming smile to let me know when I am expecting a lot from him, but with encouragement and a little bit of silly, he is willing to try!”
He’s also learning how to sign – and eventually say – “help.”
“I can tell when he needs help,” says Erin. “Rhys almost has his own language. It’s a combination of sounds, movements, signs, and a few words. I know what he’s trying to communicate, but I want others to know and I want him to communicate to them himself.” Erin and Rob also hope he can learn to walk on his own and gain better use of his weak left arm and hand.
However, Rhys turns three in June, an age at which Early Intervention services are replaced with school-based special education. “It’s not going to be the same,” says Erin. “Therapy will be more academically focused. Parents don’t have the same level of involvement – we don’t attend school with him. We’ll have no way of knowing what’s going on, and certainly not to the extent we know now. He’s made so much progress with us being part of his therapy, reinforcing what he’s learning day after day.” She hopes to enroll Rhys in Children’s Therapy Center’s center-based program for children over the age of 3. “I know that might be tough, because there’s a waiting list for kids over 3 and limits that our insurance imposes. But we’re going to try.”