This post is really on behalf of my 19-year-old son who is deaf and just right under the threshold for qualifying for state assistance for autistic adults. He definitely is not like a regular deaf person. A friend of mine has two autistic sons, one whom, unfortunately, is no longer with us, and I notice traits in her high-functioning autistic son that is also in mine.
Now to get to the subject of this post…
The frustration that stems from having a child with special needs is how other people react to that child. Yes, there are certainly things that are challenging in learning what works and what doesn’t for the child as the child grows up. But other people don’t realize this particular child is not like other children, and they will make judgment calls about the child, and they will also come up to the parent to criticize their parenting techniques. So really, it’s other people who expect every child and adult to be “normal” that frustrates me the most.
To be fair, most people are understanding when you explain why the child/adult didn’t act in accordance with what is socially acceptable. And really, if someone sees a person with an obvious special need, they will show a huge amount of patience and compassion. For example, when my mother-in-law was visiting last year, a lot of people showed a tremendous amount of patience when we wheeled her around town. So if people can see the special need, they do give the parent and the child a lot of grace.
Unfortunately, being deaf is one of those disabilities that people can’t see. This has caused quite a few unpleasant encounters for me and for him over the years. The most recent one happened this weekend. We were at a family-friendly place where they have train rides. There are no barriers that come down to stop someone from crossing the tracks whenever the train comes through a certain pathway. (They have barriers in another section of the place, but they don’t in this specific spot where the incident occurred.) My son and I were leaving a certain exhibit when the train was coming. I could hear the train coming and the bell dinging. My son, however, didn’t hear these things. He was too far ahead of me for me to run after him in time to pull him back. (If I were to run after him, I would have ended up on the tracks by the time the train was crossing the path, and that would have made a bad situation worse.) I couldn’t call out to him, of course. He wouldn’t have heard me. So all I could do was watch. I could see he was walking fast enough to avoid the train, so I wasn’t worried about him. But I knew people would get mad at him for “ignoring” the train’s whistles. And sure enough, there was a bit of a commotion. I was too far to hear what was being said. All I know is that the man running the train gave him the middle finger.
My son had no idea what he did wrong, and my husband and I ended up explaining why the man was angry at him. I mean, I get it. I know why. But I heard the whistle. I knew the train was coming. All I could do was warn my son to stop and look up and down the train tracks in the future. If I had thought this was going to happen, I would have warned him in advance. The problem is that I can’t warn him about every single event that will pop up because I never know when these events will happen. All I can do is deal with these things as they come. What I would love (but won’t happen) is for people to stop assuming that everyone can hear. That way, if someone shows no sign that they don’t hear a train whistle, it’s because they don’t hear it, not because they are ignoring it.
I do realize that even parents of children who have special needs that are visible face challenges. That friend I mentioned earlier got grief from a nurse in a hospital because her low-functioning autistic son would not be quiet. I knew this son. Yes, he was an adult, but he could not sit still and be quiet. He needed to constantly move around, and a lot of times, he would make sounds. He didn’t do this to be annoying. He wasn’t trying to upset people. This is just how he was. And even though the nurse could tell he was different, she didn’t give my friend grace. He is the one who, unfortunately, passed away.
As frustrating as it is for me to watch the way my son is treated when these things pop up, and as frustrating as it is to deal with people’s criticisms over how I parent, it must be even more frustrating for my son. He lives in a world without the subtle cues those of us who hear get while we grow up. He deals with a perspective of someone who is just under that autism line. He does not experience life the same way most people do, and he never will. I realize people will make their judgments without taking into consideration that there might be some special needs going on with him. He does get frustrated that people expect him to hear when he can’t. I just tell him that he should take into consideration that they don’t know he can’t hear so he should let them know. Not everyone will take the time to read the message on his phone or on a piece of paper, but for those who will take the time, it has helped. It’s not perfect. In a perfect world, people would stop and realize they don’t know all the facts so they don’t jump to conclusions.
I understand. My 37 year old son is intellectually challenged and in the autism spectrum. It was much more difficult when he was school aged. As you said, there are no visible signs of his disability. The hateful looks we received when his behavior was not socially acceptable were like a knife to the heart.
It will get better—and I’m sorry that you are experiencing this.
“The hateful looks we received when his behavior was not socially acceptable were like a knife to the heart.” Yes! This is exactly how I feel when this happens. I’m slowly learning to ignore those looks.
Thank you for sharing about your own son and your encouragement.
Dear Ruth, I can equate fully with the message in your blog. Luckily my daughter-in-law was knowledgeable enough to immediately spot my grandson’s hearing problem and edge of autism right after his birth. None of us, not even her husband, my elder son, had any inkling of the problems. My daughter-in-law immediately sought the aid of doctors and professionals. Hearing aids, and teaching us all how to spot and react to what might have become major issues as he grew. I thank the Lord that she sought the knowledge and had the courage and wisdom to act and continues to do so. He’s fifteen now, smart as a whip. The use of hearing aids since childhood enabled him to hear the teacher and the lessons, when teachers who didn’t know about his hearing problems had seated him where he could not hear them and react properly.
I also have an autistic grandnephew, the grandson of my sister-in-law, Luckily, his mom and dad, my niece, were not only knowledgeable and alert, but patient and loving beyond anyone I have ever known personally. His autism is not easy to handle, but they have worked miracles building up his trust and his ability to control his emotions and reactions. We trust in the Lord and God’s Blessings, and accept His will.
God’s Blessings, dear friend, and all the best. 🌹❤️🤗🙏
Those testimonies are so beautiful, Paula. It’s great how members of your family jumped in to do everything they could to help these children, and your reaction to what they did is very touching. Thank you for sharing!
Yeah, it’s not easy being the parent or the person with disabilities. The majority of them aren’t visible, but because the signage depicts people with a very visible form, most don’t know or forget this fact. As someone with ADHD and on the spectrum, I often get anxious just thinking about how I interact with others and whether or not it could come back to haunt me.
What’s even worse is that we’re still trying to shake off stigmas that have been around for God knows how long. Only the weak have mental crises; if you raise a kid with autism or ADHD, you’re a bad parent or your kid is lazy; people with disabilities should be kept away from others; etc. Not to mention the new stigmas, like, “I don’t care if vaccines will save my child! I’d rather my child be dead than autistic!” Not only are they believing in misinformation and junk science, but they’re basically saying autism is worse than death, which it’s not. Ticks me off.
Very well put, Rami. All of those stigmas really annoy me. And you’re right. Most of the disabilities are things people can’t see.
I’m surprised you are anxious about how you interact with others because you speak out at book signing events and manage to sell all of your books. It’s impressive how you manage to overcome your anxiety. Did you learn some strategies that helped you do this?
Trial and error and the desire to write full time. My issues are more with personal actions, TBH. I’m always worried I might accidentally say something that offends and not realize it till my reputation or relationship is ruined.
I have that worry, too, especially in an atmosphere where people online happily set out to destroy others.
I have a lot of respect for you because you are serious about writing full time. I know a couple of authors who say they want to make more money but don’t take any of the steps to make that happen. I hope you’re able to reach your goal.
From your mouth to God’s Ears. I’ll keep working at it and hopefully something comes of it.
I try to consider everything when I see a child acting up or not acting in a “normal” manner. (What’s normal anyway? It’s overrated, lol.) If a child is screaming or something like that, my first thought is maybe there’s a reason. Oftentimes, it’s because they are autistic. Yes, I know some kids are just brats, but I try to give them the benefit of the doubt. And a deaf child, teenager, or grown person might miss things just for the simple fact they can’t hear what’s going on. We should always consider what could be going on and not judge. Whether it be a child or an adult. We should always be kind We don’t know what others are going through.
Before I had kids, I thought parenting was so easy. LOL If only….
I agree. We should err on the side of there being more going on than what we see. I’ve stopped jumping to conclusions a while back. Now I mostly feel sympathy for parents when I see a child who is acting up. I’ve also learned not to stare because that just makes things worse for the parents who have their hands full.