Coming from a family in which all the children seem to hit milestones way before most kids, naturally, I expected the same for Braveheart.
By now, at 19 months old, I expected him to be walking, talking in full sentences (yes, FULL sentences), and in the midst of being potty trained (if not already there). But our life with Braveheart looks entirely different than envisioned, and I’ve actually learned to appreciate it.
The term “special needs” comes with such a negative connotation. We see that term and we think it’s just a politically correct way out calling out an individual’s “handicap”. Our minds jump straight to conditions/diseases that are easy to spot based on physical characteristics or very obvious behavioural characteristics. We think of lifelong struggles and accommodations. As an outsider, we pity the individual. Some of us want to keep a distance from such an individual or restrain from saying anything in fear of saying the wrong thing. On the other hand, being on the special needs spectrum in some respect (either personally or as a caretaker or relative) one may feel ashamed, awkward, anxious, and maybe even avoid situations in which one has to explain to a bystander why special equipment or special ways of doing things (learning/education included) are needed. But has anyone ever truly stopped to think that special needs is not necessarily something that warrants pity/shame/anxiety/etc.?
Maybe it’s just a different way of experiencing life. Yes, it certainly comes with challenges and struggles, but it doesn’t have to be a death sentence.
At first, I avoided using the hashtag #specialneedsbaby in my Instagram posts. After all, it has such a negative connotation. It seems ‘reserved’ for those who are diagnosed with Cerebral Palsy, Down Syndrome, ADHD, Autism, and the list goes on… But Special Needs is such a spectrum. It can range from having severe developmental deficits to having a medical condition that requires special equipment, to having hypotonia (low muscle tone) that requires just a bit more help than normal. Braveheart falls within this last example.
As a “loosey-goosey” baby (as his therapists call him), he has some special needs. (See? Special. Needs.) He sometimes wears a TLSO – a vest to help correct his posture/help him keep his back straight when sitting – he practices walking with a Kaye walker, and soon he’ll have SMOs (foot and ankle braces) to give him some stability when standing. He needs Physical Therapy, Developmental Intervention (play and social skills), Occupational Therapy, and we were told that Speech Therapy may join. We have to work harder with him than the average parent would with a 19-month-old… For these reasons, he’s considered special needs… and this isn’t even bad thing! It’s just different.
It doesn’t mean he won’t ever talk or walk on his own or that he’ll be dependent on therapies forever. It just means we have to take a special approach in helping him achieve his goals.
As a bystander, it could be awkward to engage with someone who is on the special needs spectrum or the caretaker of someone with special needs. But honestly, at least speaking for myself, I think it’s important to be open to questions in order to remove the stigma of special needs. I love when people ask me questions about Braveheart rather than being awkward or even silent! Sometimes it gets a lonely having to deal with all of this, because I’ve learned that when you’re the parent of a special needs or medical baby, people tend to stop talking to you. I’ve reasoned with myself that maybe people are afraid of saying the wrong things. Or maybe they don’t know how to start a conversation.
My advice: just start the conversation! Respectfully of course. And don’t look at “special needs” (or really any disorder/condition/disease) as a tragedy necessarily, look at it as a different experience, and try not to leave special needs parents out on an island of their own.
Thank you for reading!