Maybe it’s because we’ve all said the wrong thing before, that my article last week, 7 Things You Should Never Tell A Parent of A Child With Autism got so many shares and views. While there were plenty of readers who have some type of relationship with Autism, I’m sure there were just as many people who were able to identify with the list just because they’ve experienced life. They’ve experienced loss, illness, judgement, and well-meaning people who never fail to make them feel worse. I have to acknowledge some of the feedback. The number one suggested addition to the list was about people who talk about children with Autism, right in front of them, as if they don’t understand what’s being said about them. Many parents spoke out, wishing people would understand that just because their child can’t talk about it, doesn’t mean they don’t understand it; the conversation, whatever it be. The second most shared feedback was actually in form of a question. People wanted to know what someone should say to parents of children with Autism. I spent so much effort sharing my message of the importance of thinking before one speaks, I decided to take a few days to think about this, before responding. Here’s my best attempt at answering that question!
1. Better to have your hands full than empty.
All parents of children with Autism have their hands full. They are overflowing. Instead of questioning the quality of life the child or parent of a child with Autism might have, think about their blessings. This will help you to be a subtle reminder and testament to them all. Not everyone is aware of their purpose. Although, I must admit, I think most of us have one. Parents of children with Autism have a very special purpose. They might not always realize it. They might be overwhelmed by simply trying to survive the day. Take every opportunity to gracefully remind a tired and weary parent that they have a purpose, and their purpose involves some full hands. If they overflow, you’re happy to help them gather the pieces. Personally, I’ve heard this phrase over and over, especially when my triplets were still in a very long stroller and I had to display them through the grocery store, at the doctor’s office, at Target, and on every daily errand, along with my older children. People often asked if I was the nanny. Seeing me with all of those children, especially so many babies was odd to many people. So often when people commented about how full my hands were, it didn’t sound like a compliment at all. Make sure that when you say it, you first reflect, and believe it. Think about how lucky we are to have something important to do, some purpose, rather than nothing important at all. It really is better to have one’s hands full. It’s a peculiar blessing. This was my signature response to people who noticed how full my hands are.
2. You are special!
Instinctively, people tend to apologize, say sorry, when they hear that someone’s child(ren) has Autism. Don’t apologize. Children with special needs, really have everything they need. They have a special parent(s). Sure, you hear about the horror stories, and I’m not denying them. But, those stories are far and few between, compared to the silent warriors that love, support, and improve the lives of children with Autism, and all special needs. Those parents, who are the icons of unconditional love, are special. They need to hear it. They are leading the fight for awareness, research, and most importantly, equality. They are special. Think of everything you know about that parent and acknowledge their strengths, and everything that makes them special.
3. What’s different?
We get so tired of hearing that even typical kids_____. Okay, pissed! We get pissed. I probably shouldn’t say that, because it sounds a bit vulgar, but we feel that. Try asking parents of children with Autism about what’s different. Show a sincere interest, and listen. In my previous article, I said,
There is a difference in frequency, intensity, duration, motivation, cause of onset, etc. between the “like-behaviors” of children with Autism and those without. It’s really not the same.
That’s true. So, inquire. Ask sincere questions. Listen. Learn. Show compassion. Most importantly, show the well deserved respect the parent of a child(ren) with Autism rarely get.
4. How can I learn more?
Even parents of children with Autism have to start with the basics. We’re all on a learning curve. Showing that you care enough to learn, matters. Do some of your own research. There are a lot of credible sites that offer great answers to the most FAQs. Ask for book and resource recommendations so you can learn more. Do not carelessly mention what you’ve heard through the grapevine. Make an actual effort to get informed. Let parents know that you are curious, open-minded, and willing to learn more. Don’t dismiss Autism as “cute quirks.” Autism is not cute, no matter how adorable the child might be. Autism is a challenge that we all face. Since you’ve already taken time to read this article, I’m going to applaud you right now, and give you a freebie. There are lots of symptoms and behaviors of Autism. Still, no child is the same. Comparing one child with Autism to the general population of other children with Autism will not win points with their parent(s). For example, many children with Autism have difficulties with transitions. For one child, that might mean that s/he struggles to leave their bedroom each morning. In fact, one of my own children couldn’t leave any room, without taking with him, every belonging he could fit in his arms, for two years. He couldn’t leave a single room without going through this ritual. It took time, but now the behavior has changed. He still struggles quite a bit with transitions. Think of transitions as simple changes, that neuro-typical children might not even notice. It could be going from one room to another, or one activity to another. So, while it’s very important to take the time to learn about Autism as a whole, it’s equally important to learn about the child and parent in your life affected by it.
5. Thank You!
Take a moment to think about what an honor it is to be let into to someone’s personal life. It indicates trust, respect, friendship, and an absolute honor. Don’t undermine it. Don’t diminish it. If a parent of a child with Autism shares their story with you, be honored, and honor them. Say thank you. It’s not easy to let people in. It’s scary to share the details of our children’s conditions. Sure, we loathe being judged, but our biggest worry is putting our children in a vulnerable position, where they may be judged. So, if we share our story, appreciate that. Show your appreciation. Even a simple thank you will warm the heart of a parent!
6. Can I sit for you? Offer Respite or something that clears at least one thing off a parent’s to-do list.
Once you’ve taken the time to learn about Autism, and specifically about the child affected by it, offer some respite time to the parent(s). Respite is simply a short break that allows the parent(s) to check out and still ensure their child(ren) are properly cared for. Parents really need this. Many parents are able to get some “respite” coverage through agencies that support their children. Unfortunately, it’s often not enough, and sometimes not even available. Think of a marathon runner. The runner might be one of the best, but if s/he were constantly forced to run a marathon at sprint speed, they might not make it through the race. This analogy is typical for parents of children with Autism. We are often going at full speed, all energy, just to keep up with the day. Sometimes, we need a break. Sadly, there are few people we can trust (no matter how well-intended) to care for our children. Think of a patient in the hospital being left in the care of the hospital operator while the nurse was out to lunch. That would never be okay, right? Well, for parents of children with Autism, we find it just as outrageous to leave our child(ren) with someone who knows nothing about Autism or the unique needs and behaviors of our child(ren). If you can’t offer respite, offer to help with some household chores, errands, cooking, or even helping out with other children in the household. If you’ve done you’re homework, you will have learned that being the parent of a child with Autism can be a 24-7 job, literally.
7. You can tell me!
Don’t look at this list as an exact 1-7 list of priorities. In fact, this might be the most important thing for many parents. Even if you are the grandmother, aunt, babysitter, or parent’s best friend in the world, we might not always feel like we can tell you what we’re really feeling. We worry about sounding like we complain too much. We vent, just like any parent, but we don’t want to come across as burdened. Like I mentioned in 7 Things You Should Never Tell A Parent of A Child With Autism, we’re challenged, but not burdened. Most likely, we don’t want to hurt your feelings, and we don’t always know how to tell you that your questions and especially some of the ignorant comments, hurt us. We keep things to ourselves, when we shouldn’t. Sometimes we feel like you wouldn’t understand. My own children had an issue with bananas. In fact, they still do. Most people who have witnessed this have also misunderstood it. They’ve understandably thought that my children didn’t want a banana. The truth is, my children love bananas. Two years ago, my children could barely speak. Bananas, when peeled too far back, often broke. The three of my children with Autism had meltdowns. I’m talking end-of-the-world breakdowns. It’s been hard for them to understand that we can’t peel the bananas all the way down, without the risk of them breaking. For two years, none of them would eat a broken banana. They just wouldn’t. But, they wanted them peeled all the way back. When their bananas broke, they would cry for what seemed like hours. They wouldn’t eat them though. Not buying bananas might seem like the right solution, except they would cry every day when we didn’t have them. You know, they loved bananas! I feel uncomfortable even writing about the secret ongoing banana crisis. It’s important that you understand, things get complicated. They aren’t always what they seem. It’s hard to explain over and over again, to non-believers. Trust us. We know our children. If you hear some ridiculous story about “why” our child(ren) is having an over-the-top reaction to a simple thing, believe us. It might not make sense to you. Sometimes, Autism doesn’t make sense. It’s different. We learn to parent differently. Can we trust you? You won’t judge us? You won’t doubt us? Let us know that we can tell you. We probably will!
If you are the parent of a child or children with Autism, what would you add to this list? If you are the friend, family member, or other person involved with children with Autism, how many of these things have you done already? What things would you add to the list? We’re all learning! Add your thoughts in the comments.
If this article was helpful, your social shares are appreciated!
By: Alicia Gonzalez