People like being comfortable; “ordinary” doesn’t challenge, it pacifies. Most people like being liked, and actually want to be liked.
An aspect of raising special needs kids, which I am not loving, is the feeling that you are always asking for special favours. Everywhere you go, every club the child joins, every IEP, every assessment; in the spirit of inclusion (and here I mean true inclusion), asking for accommodations, extra understanding and special favours is part of everyday life. Slowly but surely, you start irritating people and even become an inconvenience to them. You start carrying the perception of being a “difficult mom”, and even perhaps get slapped with the label of being “overprotective”. You start becoming disliked.
Feeling like you are a consistent pain in the butt, is burdensome for parents. The spotlight shines brightly on us as it is, simply by parenting and figuring out these “different” kids of ours. This is one of the greatest adventures we will ever find ourselves on, but one not without blood, sweat and tears.
No one likes to be an inconvenience to others. Actively parenting deaf or hard of hearing kids, is going to need you to get comfortable with being less than popular.
The soccer coach who you asked to learn sign language to communicate with your child on the field, might find that an inconvenience. Pluck yourself up, walk across that field and offer to teach him a few signs and send him resources to help him learn. Might that feel awkward. Yep, it might, do it anyway.
The teacher in the mainstream school who speaks into her whiteboard as she teaches. Ask her not to. Explain that your child needs to optimize every opportunity to access, so needs to see her lips and not have any sound muffled. Hey, she might find adapting her teaching style slightly, as an inconvenience. Ask her anyway.
The cinema that never has any films captioned. Ask the ticket salesman to call the manager. That might inconvenience the man behind the counter. Ask him anyway. When the manager arrives, discuss options of having captioned viewings. “Who are you who dares to ask?” I hear you wonder. You are a parent of someone extraordinary, with the task of journeying courageously. Overcome your insecurity, and ask anyway.
School IEPs; some schools do these well, others no so much. Does it feel fun to challenge areas that need improvement, or request learning approaches that best fit your child? Hell, no, it’s uncomfortable, it screams, INCONVENIENCE! Take a deep breath, and ask anyway.
The lecturer who you want to ask to wear an FM system for your child. You find their qualifications and level of education intimidating…you’re just a mom, what gives you the right to ask? Inconvenience, maybe? Swallow your pride, and ask anyway!
The doctor for whom you have a list of burning questions about your child. You don’t want to waste his time? Might taking the time to alleviate some of your fears be an inconvenience? Some may think so. Open up that list of questions, anyway.
The church choir that has started preparing for the Christmas service. Have you considered asking them to learn and prepare one carol in sign? No? What if they see it as an inconvenience and decline the request? Consider Who perceives your child as fearfully and wonderfully made, and ask anyway.
The thing is, advocating for our kids, even in little ways, is not something we should apologize for. Through advocating for them, we show them that we think they are important, that their feelings matter… that they matter. We model viewing inconvenience as part of everyday life, as part of learning and adventuring, so that when they are independent, they can ask for themselves.
I’m slowly starting to care less about conveniencing everyone else, and more about seeing that my child can be their best and know that they belong. Knowing that they are worth asking for and fighting for, and realizing that they do not need to feel bad for needing any additional accommodations. They are worth my feeling awkward and uncomfortable; they are worth someone else’s inconvenience.
Sometimes a “special favour” or request is received with enthusiasm at the thought of making a difference, to include and embrace diversity. There are people who truly want to help and go the extra mile. Words, cannot express how a parent’s heart dances when moments like these surprise you. You are the angels who we appreciate more than you could possibly know. Thank you for seeing the heart behind the request; the nervous voice or apologetic tone. Thank you for placing my child’s needs before your own convenience, and deciding to accommodate her, anyway.
When accommodations are made, be thankful, express gratitude sincerely. Share these stories with others, to motivate and inspire them. Support clubs and people who embrace accommodations. Write letters of thanks and recommendation, to community papers and social forums.
The very next time you need to ask for some kind of accommodation, some kind of adjustment to plans, remember the precious person whose voice you represent. Lift that chin up, shoulders back, frown lines straightened, with a smile on your face. Don’t expect the worst, ask confidently and unapologetically. Graciously receive assistance, and remember that there are other moms and dads also walking across that field, through that classroom, into that office…daring to inconvenience.