1) Love your child fiercely.
This seems like common sense and of course typical parents love their children just as much as special needs parents do. The difference between us is that special needs parents are often far too well acquainted with the “what-ifs.” We tend to spend too much time in that dark place where the worst of possible outcomes resides. And when you have wallowed in that horror and despair and come to the other side to realize that although those scary things remain a possibility, all that we can do is love the amazing children we were given and give them the best life possible for however long we have that privilege. Parents who are this familiar with the worst of possible outcomes, love with a ferocity like no other.
2) Advocate for your child and teach your child to advocate for themselves.
Not only do special needs parents advocate for our children, but we work actively to teach them to advocate for themselves. We want our children to have lives that are amazing and fulfilling, despite their challenges, and to accomplish this often requires a great deal of advocacy on the parts of parents and the children themselves. Advocacy isn’t about being nasty or negative or louder and more obnoxious than everyone else (most of the time). As my mother always told me, you catch more flies with honey than you do with vinegar. I remember this adage when I’m advocating for my children and it usually serves me well. I truly believe, that most people want to include children with disabilities as much as is possible, however they don’t always know how to do this, and for many, it doesn’t even occur to them to try unless it’s brought to their attention. That doesn’t mean they are rude or thoughtless people, it just means they have the luxury to not have to worry constantly about how level the terrain is, whether there are curb cutouts or stairs versus elevators.
My point is this. Typical children need to learn advocacy skills so that they can stand up for themselves throughout their lives. They also need their parents to stand up for them from time to time when they aren’t able to manage a difficult situation on their own.
3) Don’t sweat the small stuff.
When you have just returned home from your child’s emergency brain surgery after a week long stay in the luxurious pediatric ICU, the fact that all your child wants to drink is chocolate milk seems perfectly reasonable. Chocolate milk is pretty yummy! Yes, at some point you’ll have to draw some limits, there are some things that have to be done. Sadly homework is a must, getting in some sort healthy food every day is also pretty important and at our house, using appropriate manners ranks up there as well. But when you don’t know how many tomorrows you’ll have to spend with your child it definitely becomes easier to decide to skip the dishes or the laundry in favor of snuggling up and watching a movie or reading a book with your kiddo. It becomes easier to opt not to battle over a couple of green beans left on plate or a messy bedroom. So much of it becomes small stuff when you’ve come face to face with really big stuff.
4) Say yes!
When our online community lost a child to epilepsy recently, I believe all of the members experienced some trauma. It’s impossible to not, for a moment, put yourself in the shoes of that heart broken and mourning parent. We are uniquely qualified to wear those shoes and they are horribly painful shoes to wear. Around the time we learned about this loss, my kids wanted ice cream for dinner. They asked me as a joke, sure that I would say no, but I said yes. What the hell? Have ice cream for dinner once in a blue moon. Say yes when your daughter wants to where the pink and purple psychedelic leggings with the red Christmas dress and light up shoes to church. Say yes when your son wants to buy an inexpensive toy at the grocery store. Say yes in the checkout line to a candy bar or pack of gum every now and then. Take the time to say sure to the rides on the way out of the store or the crane game or the gum-ball machine. While none of these things seem particularly special in their own rights, these are the makings of special memories that your children will hold onto and so will you.
5) Prepare your child before they enter a situation.
For children with behavioral or emotional regulation difficulties being prepared in advance can make a big difference. Explaining to children what the expectations are for their behavior in the setting, how long you will be there and what you will do while you are there, helps kids understand what to expect and helps them be at their best while they’re there. Truthfully preparing a child for a medical procedure, explaining what will happen and what, if anything will hurt, can decrease fear and anxiety related to the upcoming procedure. Preparing a child with mobility limitations for possible hazards and difficulties they may encounter maneuvering the new space can decrease their stress associated with going somewhere for the first time along with increasing their independence in the long run. Any of these scenarios can apply to typical parents and their children as well.
Many children are filled with anxiety when going somewhere new and would benefit from some preparation about what to expect. Most children behave better in community settings when expectations and the plan for the trip have been carefully laid out for them. Explaining difficult things to children in an honest and forthcoming manner, is likely to lead them to trust you in the future and come to you with questions and concerns as they get older. While it’s tempting to say “this won’t hurt to bit,” the message, if it will in fact hurt, is that they cannot trust their parents to tell them the truth. Striking a careful balance between scaring your child and explaining what will happen in an honest way can be difficult. However, I believe that it is worth the effort over comforting the child with a lie.
Special needs parents who have sat with their children through countless medical procedures become quite adept at this balance. “No, the EEG leads don’t hurt, but they feel kind of funny and the glue smells weird.” “Yes, the needle will feel like a tiny pinch but it will only take a second and I’ll hold your hand the whole time.” “No the MRI machine doesn’t hurt, but it’s very loud so don’t let it scare you when you hear it banging and clanging.” “Yes, the stitches will hurt when you wake up from your surgery, but the nurses will give you medicine to help and we’ll make sure to have a giant bowl of ice cream as soon as your feeling better.” “Yes, of course the ice cream will have sprinkles and whipped cream!”
Because at the end of the day, there are few things that the promise of ice cream and sprinkles can’t make at least a little bit better.