This is a question I get asked often. It doesn’t bother me because generally people are curious and concerned, and that is expressed through questions. I am a curious person, and I ask questions. Sometimes those questions embarrass or upset people, but that is never my intent. So I know that is not the intent of those people asking.
So when I get asked about Jack-Jack, I talk about him, his challenges and his victories. And I understand that the people asking are showing care and concern. In addition, they are trying to learn about something that is confusing and only gets more confusing when you hear stories, but don’t actually interact with the child.
Asking questions is the only way we will learn as a society. Personally I am more offended by the Autism Awareness campaigns that only show high-functioning children. We need the world to see autism for what it truly is. We need people to see the low-functioning children. The children that are difficult to watch because they bang their heads and scream.
We need the world to see the stress our families undergo. Studies suggest that an autism mom suffers Post-Traumatic Stress Disorder the same as a soldier in combat. But I contend that in some ways it is worse than combat. When you are in combat you have other soldiers to rely on. When you are raising an autistic child, it is many times lonely, isolating, and heartbreaking.
I intend to share with you some of those raw moments that I haven’t been able to share before now. Because if Jack-Jack and I can give hope to one mom who is struggling to make sense of her life, who feels alone, and lays in bed at night and cries, than the raw, painful emotions of my life will be worth sharing.
You see, Jack-Jack appears high-functioning to look at, but life wasn’t always like this. In fact, before he started talking, life was pretty horrific. Jack-Jack bonded with me and his older sister, Melissa. The two of us took the brunt of his anger, frustration, and outbursts. The autism community calls them meltdowns, because the child is not having a traditional tantrum, but until you learn the signs of an impending outburst, even as the mother, I was taken off guard.
I have a friend that calls meltdowns “eruptions.” And that is what it looks like. All of a sudden, there is hot lava being spewed out that you cannot stop. After Jack-Jack began finding his voice, he still had meltdowns. After eruptions, as he laid in my arms sobbing, he would ask, “what’s wrong with me?” And I would answer as honestly as I could for a child that has a low understanding of the world around him, “your brain works differently.” Because that is the truth. He cannot process information and emotions like you or me. And this causes eruptions, outbursts, or meltdowns – sudden, intense, and frightful.
When I started my blog I intended to talk more about Jack-Jack and our struggles, but it is often painful and the emotions are overwhelming at times. Because when you hear the word meltdown or outburst, what is the first thing you think? You think a child that is having a tantrum. Some kids might bang their heads with a tantrum. And as a mom with 4 older non-autistic children, I know that the best way to avoid future tantrums is to ignore them.
But with autism ignoring them is scary. On a daily basis, I did not have the heart of my child. Many autistic children are withdrawn, don’t smile, don’t make eye contact. And it seems that when I had made strides in that direction, the last thing I would want to do is ignore the meltdown and have Jack-Jack regress into his own little cocoon. Being alone through an eruption is terrifying to Jack-Jack. He needs comfort, contact, and to know that the people he depends on will help him through this awful episode.
When I hear stories on the news about teachers or aides handcuffing or putting an autistic child in a duffle bag to restrain them, my heart aches for these children. They had a real need, were uncontrollable, and were treated worse than an animal. Think about the times you were frightened, overwhelmed and in need of care. What was the one thing you needed most? Human contact? Someone to care? But because many autistic children can’t handle touch, this becomes difficult. In the coming months, as I share more about Jack-Jack, I will talk about how we helped him overcome some of his touch issues.
Biting. Hitting. Pinching. I hear from others that “I can’t take my child out because I worry that he will hurt someone.” I was at a conference last year, and a man shared that his nephew was “severe.” He hits and bites his caregivers. I hear this over and over. “We couldn’t do Disney, go to dinner or (fill-in-the-blank) because of our child’s behavior.” Jack-Jack seems pretty calm and happy most of the time, so it shocks people to hear that at 3-4-5-6 years old (and maybe longer because I can’t remember when it stopped), Jack-Jack hit, bit, and pinched Melissa and me over and over. We had bruises all the time. It was pretty intense, and yet, he was still a kind, loving boy more often than not.
All the traditional ways of dealing with behavior issues didn’t work. Spanking was definitely out. In fact, my ideas about spanking have dramatically changed since having Jack-Jack. Time-Outs: He reacted like we had imprisoned him. I still can remember his gut-wrenching screams. When Jack-Jack did something wrong, he needed (and still does) a loving mom, dad or sister to wrap themselves around him, let him know what he did was wrong, and to let him know we still love him. He is very sensitive to voice tones and will ask repeatedly “how do you feel at me”, “are you angry at me”, or “do you still love me?”
Jack-Jack is extremely perceptive to certain words, unkind words, harsh tones, and angry “eyes.” His list of “trigger words” has definitely shrunk, but anything to do with death, dying, blood, doctors, or dentists causes “pain for him.” It is such an intense sadness. As he learns to deal with this, he usually tries to think of something funny (maybe a Mickey Mouse cartoon or a Sponge-Bob episode), and he will laugh. This usually occurs during a Sunday sermon while the pastor is talking about the death of Jesus. But we are thankful we can leave the house with him.
I met a woman at Disney without her autistic son. She says he is low-functioning and Disney World would not be a good place for him. I tried to give her hope with my words. Sometimes I wish I could go back several years and tell myself not to worry so much, but the reality of autism is that every single child is so different. Every child advances at a unique pace.
I know teen and adult autistic children who speak and some who never speak. There are adults who work, and adults who live in group homes, and adults who marry and have children. My son was late to potty train, and yet there are some with autism who are never potty trained. As a society we want diagnoses and labels that put children on a chart. As if to say, “here is where your child is and this is what he will be able to accomplish.” But with autism that is not a reality.
So while my son is potty trained, and gets dressed and feeds himself, there are so many things he can’t do. When I am asked what his “super power” is, I answer, “He is cute.” Because society has also been taught that autistic children have some super power that will get them through life. But that is not an accurate depiction either.
Jack-Jack cannot tie his shoes, but they do make slip on shoes. Jack-Jack knows all the lines from Disney’s Beauty and the Beast (and many other shows too). In fact, that is how he taught himself to talk. He used lines from Disney movies to respond to us. I read that this was a good thing, but it didn’t feel like a good thing when we were knee-deep in movie lines. Many of what autism parents go through doesn’t feel good, even if it is considered progress. Sometimes you give up one stage for an equally awful new stage.
There was a boy at our church who used to rewind and rewatch the same clip from a show over and over, and when I watched him, I was thankful that Jack-Jack wasn’t doing that because it would get old quickly. A few years later, Jack-Jack began rewinding and rewatching the same clips over and over. It was heartbreaking to me. I viewed it as a regression, but to Jack-Jack it was a necessary step in his brain development.
When he rewinds, he is intensely studying scenes, frame by frame for the details that others overlook (or don’t care about). He knows how to speed up and slow down Youtube videos and movies on a DVD. He has found how to use the DVD menu to loop a particular scene in a movie. These are things many people can’t do, but he somehow learned without any instructions.
Spelling: Jack-Jack asks me to spell words all day long. Even words he knows how to spell. And he can spell words that he cannot read. Today he can read a word that tomorrow is gone. It is the same with math facts and people’s names. But he knows the Eiffel Tower is in Paris from watching Ratatouille. And somehow he knows the Easter Island Heads are in Chile, but he doesn’t know where he learned this information. Most times he cannot express wants or needs and very rarely asks for food, drink or toys.
So High Functioning or low-functioning? These are terms to try to understand something that cannot be explained.
Basically I have no idea what these terms mean and I doubt most experts know. Jack-Jack is potty trained, feeds himself, and he can put his clothes on. He is high-functioning on the potty training scale, but at age 4 he was not. But life is not measured in just potty-training. He cannot tie shoes. He cannot tell time. He reads at a 2nd grade level. So he is low-functioning in those areas. He is kind, caring and loving, so he is high-functioning in those areas. If your child isn’t as kind, should I label him low-functioning on the plays nice with others spectrum?
As a society, we want to explain things. But as parents we want a diagnosis. We want someone to give us hope for the future. We want to understand what we are dealing with. But I have learned to have hope. I have learned to expect more. And I have learned that my son is an overcomer. If you are reading this, and you have an autistic child at home, if I could tell you one thing, it would be to HAVE HOPE because the truth is Jack-Jack’s future isn’t written and neither is your child’s!
Would you like to know ways to be a friend to an autism parent? Read QUESTIONS NOT TO ASK, AND WHAT TO SAY INSTEAD!