Even though I am just getting started in my role as a mom to two beautiful boy with full mutations of fragile x syndrome, my son Caleb is nearly 3 and Benjamin is 10 months, I have should have been prepared to be a mom to special needs children. Both my boys have fragile x syndrome which causes them to have significant intellectual disabilities. Both my boys are delayed in all areas. The reason I say I should have been prepared is because I am a teacher, and there are so many similarities between a teacher’s relationship with their students and a parent’s relationship with their children who have special needs.
As a teacher, I constantly wonder how am I still doing this everyday, showing up, working my hardest to help these kids learn when sometimes I see very little progress and am sometimes met with hostility. Yet, I show up because I love my students and know I have to be making some sort of a difference. Right? As a teacher, I rarely get acknowledgment from my students that they care about me or enjoy having me as a teacher. The same is sometimes true with my boys. My son, Caleb, rarely shows me physical affection on his own accord, and when he does, he leans his head into mine with a great big smile. This is Caleb’s version of a hug. It happens so infrequently that I would gladly pay a large sum of money and donate a kidney for it to happen on a regular basis. My younger son, Ben, much like his brother was when he was a baby is smiley and shows physical excitement when I’m near him. However, he has very little interest in cuddling and past the age of 2 months, would not let me hold him while sitting in a rocking chair like all mothers envision doing with their babies.
As a teacher, I am constantly showing up when my students are not. I’m there with a main goal, a lesson, plan, an objective, and there they are interrupting me, too distracted to learn, too frustrated with themselves or with what’s going on around them to focus. Yes, I should have been prepared to be a special needs mom. My boys have no interest in working on developing their pincer grips; they struggle so much with motor planning, they’ll avoid physical therapy at all costs, and speech just isn’t coming for them. So Caleb may have a meltdown when he can’t communicate his ways or grunt and cry until I figure out exactly what he’s asking for. Yes, just like many of my students, my boys struggle with their learning in a way that seems so daunting and so overwhelmingly impossible, I don’t know how I keep showing up for them each day, but I do.
Just like with teaching, I know there’s always more I could be doing for my boys, more strategies, more interventions, more therapies, less tv time, less sugar or less dairy, new medicines, new research studies, better techniques, or better ways to advocate for them. Yes, just like teaching, I know being a mom to special needs children means I will always feel I should and could be doing more. I will always question, “How are they still not getting this after all we’ve been working on?”, “How can I help them more?”, “When will I see some significant progress? But, just like teaching, I need to remember that my boys are on their own learning track, they’ll get where they’re going when they’re ready, I’ll remember that certain things are beyond my control no matter what I do. And most importantly, I’ll remember that sometimes what’s most important is that these kids need love, they need to know someone cares about them, someone enjoys seeing them each day, and someone is rooting for them because I know deep down that if they know all of that, I’ve done my job as a mom.
turtleblues86 