This is the season of celebration. Our children are looking forward to opening presents. They’ve been on school vacation, enjoying a break in the routine. For some of us it’s also the season of judgement and chaos.
For those of us, our children out of the routine which sends them into a tailspin. They depend on their schedule to keep a hold on their reality. They know when they are waking up, when the bus comes, when lunch is and what time therapy happens. Winter vacation eliminates that for (in our case) 9 days. Not only have our children lost a hold of normalcy, they’ve endured 9 days of visiting families that love them but do not understand them. Their parents have endured 9 days of judgement and overheard their loved ones whispering about their perceived lack of parenting skills.
Over the past few weeks, I’ve heard from friends with children who are not typical vent, cry and wonder why they even bothered to either have family visit or spend their limited finances and vacation time to travel “home”.
For those of you in normal land, you probably don’t even realize that you have been overheard. You probably felt you were being helpful and constructive.
“Can he just sit still” — the truth is he cannot. He has ADHD and being at your home (not his) has increased his anxiety. None of the usual things he does at home to control his hyperactivity are available. So he paces, he wanders around the room, he jumps on your couch because he is about to burst and has no outlet/control to manage it. (As one mom said to me–“I wanted to reply: you think it’s bad now? Wait until 2am!)
“Can she look at the camera for the family photo”–No she cannot look at the camera. She has autism, we are just happy she is in the picture. It is difficult for her to make eye contact, she does not have the ability to do it on command. (As one mom said to me–I’m just glad she is sitting and not flapping for the photo!)
“She hasn’t eaten anything all day” or “All she ate is potatoes”–she has sensory processing disorder and it is difficult for her to eat. While you were proactive and bought chicken nuggets, they’re not the same brand that she eats at home. They taste funny, have the wrong texture or pick any reason. (What the mom is silently thinking: I’m just happy they sat at the table!)
“I can’t believe you let him talk to you that way”–The one is tough, because we really wish our child would not say “I hate you” or something much worse. And we get it, we truly do how shocking it is for some of you who have only heard that from your teenager when you took away their keys. You demanded they apologized and they were truly contrite. It’s not the same when your child has a mental health issue. They’re trying to get a reaction. We’ve learned not to react. It only escalates the behavior. It already hurts, but trust us and don’t judge us. (As one mom said–“They know my child is in behavior therapy, yet they don’t put 2 & 2 together that this is why!)
“Do they HAVE to have their IPAD at the dinner table”. Sometimes yes, sometimes no. In this case the world has become so loud that they need to escape into the IPAD and close the world around them. They’re not used to having 25 people over for dinner. It’s overwhelming. Escaping into Miles from Tomorrowland is not. (What the mom wants to reply: “First they’re saying he’s not eating. Now he’s eating and they’re complaining about the IPAD. My husband wanted to take bets on what I would be judged for next”.
“Do you think she will ever be potty-trained?”. Yes, but you are sleeping in her room, she is not going to bed on time and when she was ready to use the bathroom there was a line.
“They didn’t really try to kill themselves, was she just looking for attention.” Yes, they did try to kill themselves, we don’t know why (or if we do we are not sharing with you). We only have to make sure they never feel their world is so helpless again.
These are just a few of things parents with children are asked during their Griswold Family Christmas. Most of the questions are handled as we try to take a deep breath and not let it hurt too much.
Then there are the comments that we are not meant to hear. Comments about our parenting (or lack thereof), comments about our child’s character and comments that we cannot unhear or ever forget. It hurts beyond belief to hear grandparents or aunts/uncles or cousins say they don’t want us around, or why did we have to bring “him” to party. “They ruin” everything, “they” don’t let their mom catch a break, “they” don’t let the dad watch football with everyone else, “they” have no control. “I” wouldn’t put up with that crap, “we” would never allow “them” to be disrespectful, “I’d” smack “that” kid.
For parents of children with special needs, our world is becomes myopic. Our “normal” friends become less and less as our child ages and the difficulties become greater or the behaviors more antisocial. We go out less, we cannot afford respite care and it’s difficult to find a babysitter for a 15-year old with Down Syndrome or Autism or Insert anything here. We learn to deal, we figure ways to adapt and we network to find a community (usually with our diagnosis) that “gets” this life.
To learn our child’s presence is not welcome, by their own family is heartbreaking.
And it doesn’t have to be. If your grandchild / niece/nephew / cousin /friend has a child with a disability, learn about it. Google is your friend. Ask about it, not about the “behavior” but about the mental condition. Ask what you can do to make the holiday / vacation / weekend / hour more easily managed. Visit more often, not less. First it won’t be a shock to your system (we get it, that it is sometimes shocking) and second, the child will understand you more. You won’t be disruptive to their lives, but welcome.
Because as disruptive as they are to your world of normal, you are 100 times more disruptive to theirs.
And to my friends home on winter “break”, it’s almost over. You only have a few more hours before you are back to your “normal”. Good luck and stay strong.
For those who wish to learn more about your relative’s condition before the next round of holiday torture: