I should have been prepared to be a mom to special needs children
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.
Fragile X matters
It’s crazy to think how something that has been a part of you your whole life can remain unknown well into adulthood and then suddenly be discovered and become one of the things that matters the most. This is not a typical story most moms tell, but for moms who are affected by fragile x, it is. Just like most people who are a part of the fragile x family, I had no idea what fx was until my child received genetic testing for it, and then it mattered so much to me because I discovered it had been a part of me my whole life. “Fragile x syndrome is the most common cause of inherited intellectual disability and the most common known genetic cause of autism or autism spectrum disorders” (https://fragilex.org).
My son, Caleb, is my first born. My husband and I spent over a year and a half trying to get pregnant with him and wanted nothing more than to have a baby. While pregnant, my obgyn informed me that I could receive testing that could identify down syndrome in my baby. My husband and I decided not to get the testing done, as so many parents decide not to do long before they know… they are already special needs parents. I, like many other soon to be moms, said “It doesn’t matter if our baby has down syndrome; we’ll love him just the same!” As much as I cherish the fact that I said that statement, and meant every bit of it long before my son received his diagnosis, I cringe a little too. Because even though my son doesn’t have down syndrome, he does have an intellectual impairment, he has fragile x syndrome, and it does matter. Being the parent of a special needs child DOES matter.
Having a child with special needs matters because there’s no way to prepare for the emotional roller coaster you’re about to get on that I can only assume won’t really ever end. My son Caleb is 2 and a half and was diagnosed with fragile x syndrome in the summer of 2018. A few months later, my son Benjamin, who is just a baby, got his results back. Ben has fragile x syndrome as well. I had no idea what to expect when it came to raising a child with special needs, let alone two, and for the most part, I still don’t. We’re just starting to accept our role as parents of two beautiful boys who happen to have significant special needs.
Raising children with special needs is so much more than many of us picture it to be before we become parents. While I was pregnant with Caleb and well into trying to figure out a solution for his delays, I had so many naive thoughts about disabilities. I naively thought that because Caleb looked at me and smiled at me when he was just a few months old that he couldn’t have autism. When Caleb was evaluated through early intervention at 13 months old and qualified for services, I thought it would take a few months for him to talk, walk, etc. and then we would move on, he would just catch up. Right before Ben was born, when Caleb had a diagnosis of provisional autism, and I was starting to accept the idea that maybe I did have a child with some significant special needs, I did not have a single thought or worry about Ben having special needs too. I was completely ignorant about the link between genetics and certain intellectual disabilities. I also had no idea that all too often special needs parents have babies who they presume to be typical but then in the most heartbreaking way the disability slowly starts to show itself, and then once a special needs parent finally receives that diagnosis, they look back and think how did I not know or did I know all along and just ignore the signs. As much as Caleb’s fragile x diagnosis made me want to fall to the ground sobbing as I walked out of his doctor appointment, I later revisited the hand out the dr gave me and read the description. I thought, without a doubt, “this describes my son.” Looking back at how he never wanted to nap and seemed so alert, how he wanted constant movement, and hated strangers and parties, it all made sense. Yet I still continued with my naivety. Even after we found out Caleb had fragile x syndrome, I still kept thinking Ben probably didn’t have it. After all, Caleb started to show fear of any new person by 4 months old and hated crowded parties. Ben was so different, he didn’t need to be rocked to sleep, he went to anyone who smiled and was happy to hold him. Yes, once again I was ignorant and thought that two brothers with the same disability would be similar in so many ways. I forgot that individuality matters because despite their disability, they are individuals.
So here I am, 4 months out since Caleb’s diagnosis and 2 from Ben’s, a little less naive and learning that being a parent to special needs children does matter. Because special needs children are more than just disabilities and our society doesn’t really reflect that. My husband and I don’t get to watch tv and movies and see our family or our boys depicted in them. I don’t see a reflection in the media of what it’s like to be a mom who will be a caretaker for her children when they are adults, and we don’t get to take our boys to all the amusement parks, arcade centers, and family fun zones that are designed for children without thinking twice about how much they might hate it, or be overwhelmed, or have a meltdown, or be stared at. These things DO matter.
But what I am trying desperately to remember what matters more is this: I can enjoy my boys for who they are and work to get the world to do so too. Being a special needs parent does matter because everyday we are reminded of how our children don’t fit in and how much change is needed. My husband and I are still learning how to be parents, our boys are so young. We appreciate all of the parents who paved the way fighting tooth and nail to advocate for their children and let the world know they matter. We’re just beginning to learn what matters when it comes to being special needs parents.
turtleblues86 