When my oldest was 18 months old he had three seizures in less than 24 hours. He was hospitalized and had a battery of tests run on him. After two years, a CAT scan, three MRI’s, two EEG’s, and three different neurologists….we finally had a diagnosis. He has Sturge-Weber Syndrome.
Thankfully he only has the neurological aspect of this syndrome and not the developmental delays. What this means for us is daily anti-seizure medication, daily aspirin therapy, and extensive use of the baby monitor (on my part). One of his doctors also suggested he start school as a toddler at 2 years-old to help with any socialization difficulties he may have as a result of his seizures. At the time he wasn’t diagnosed and the doctors didn’t know why he was having these seizures, but I was happy to start him 3 mornings a week. It gave him some time to learn separation, socialize, and I could focus on my younger son one-on-one for a few hours.
So, now as a 4 year-old in Pre-K he’s been in school for 2 ½ years. I thought my worries about socialization were long gone now that he seems to be outgoing and friendly with other children. Much to my surprise I found out that his teacher is concerned about him socially and explained to me that he’s struggling with social awkwardness. I had a gut feeling that something was wrong at a birthday party I attended with him last month. He seemed to have a really hard time engaging with the other kids. He wasn’t being shy, but was pretending to be a superhero when trying to join in the fun with the other boys. But the other boys weren’t playing Superheroes, and I felt a tug at my heart when I saw them look at him like he was weird. I was feeling embarrassed for him and wished he could just walk up and say “hi, can I play?” or something like that. I was painfully shy as a child, and he’s much braver than I ever was…..but I think as he’s aging he’s finding it more difficult to feel comfortable in social situations. We’ve only been living in our new house for three months so he’s the new kid in the class. And I’m the new mom so it hasn’t been as easy as I’d hoped to set up weekend play dates and new activities. My 1 year-old daughter also naps twice a day so I still feel a little trapped in the house.
In addition to social awkwardness my son also has zero interest in learning and doing work at school. This on the other hand didn’t surprise me at all. He’s never been interested in learning letters or playing anything other than Superheroes. Yes, we have puzzles and games but he’s always far more interested in imaginative play. I’m thrilled he has such a great imagination but I don’t want him to be disinterested in learning or behind in school. I’ve also prided myself in the fact that my kids were always at the Zoo, Children’s Museum, Aquarium, Science Museum, Botanical Gardens, or nearby Farm. I try to keep them exploring and engaged in the world around them. I was the mom who always had my kids out of the house almost every day. So, why is he having problems?
His teacher and I agree that his struggles aren’t neurological. However, I still feel a sadness when I think that he’s going to be getting on a school bus next year and going to a new school with new kids and I may have less contact and involvement with his teacher. I’m working with him at home to learn his letters and have more interest in school work. I’ve also met two parents who have children going to the same school next year so we plan to get the kids together to make everyone’s transition easier in the fall.
Up until now many of my parenting concerns revolved around feeding, clothing, teaching, entertaining my kids, their health, etc. But I feel I’ve turned a corner now and the problems I’m faced with aren’t easily fixed. I can’t fix this with a trip to the Dr. or finding a snack, or getting a toy out of the closet that’s out of reach. This is about personality and watching your child become a real person. It’s harder than I anticipated and wish I had that magic parenting manual that has all the answers.