[callout]Advocate: “a person who speaks or writes in support or defense of a person, cause, etc.; a person who pleads for or in behalf of another; intercessor.”
I have great respect for moms and dads who are advocates for their children. It’s among their most important roles. My friend, Dawn, is that type of parent.
Dawn blogs about “a look inside life with a child on the spectrum” at “A Fly on the Wall.” I’ve known Dawn, her husband, Jon, and their son Enoch for several years. I was glad to meet their younger sons a few weeks ago.
Dawn recently blogged vulnerably about what she wishes other children knew about autism so they could better relate to their son. In honor of moms and their commitment to their children, I’m posting her blog here. I’m also posting it because I agree that we could all benefit from better understanding autism from a mom’s perspective. I hope her passion and information inspires you to sit down and talk with your children.[/callout]
I Want You to Talk to Your Kid about My Kid – by Dawn Ratzlaff
A couple of months ago, a little girl at church asked me, “Is Enoch a baby?”
“No… He’s six years old!”
“Then why does he wear diapers?”
“Well, Enoch hasn’t learned how to use the potty yet.”
“Enoch has something called autism. Because of that, his brain works a little different from yours. So, he hasn’t learned how to use the potty yet. Or talk. But hopefully he will someday.”
The interaction was short, and my answer seemed to be all she needed in the moment. But, I thought to myself, “They’re starting to notice that he’s different.”
I wondered if when she went home if she would ask her parents about Enoch. What would they say? Do they know Enoch has autism? Do they understand what autism is? How can they explain my child’s differences to their typically developing child?
Yesterday, we went to the museum. While we were there, a little boy asked Enoch to play with him in the sandbox.
He said, “Do you want to play with me?”
Enoch said, “Yes!”
“Great! Start getting sand.”
Blank stare. “Otay!” (Okay)
“Okay, now you need to do this….” “Why aren’t you talking?” “Why are you talking like that?” “No, use your REAL voice.” “I don’t understand you….”
Enoch just smiled and continued trying to play with the little boy, and the little boy kind of played with Enoch, but he seemed to lose some interest when he realized Enoch was different.
I wanted to step in. I wanted to talk for him. I wanted to tell the little boy that Enoch didn’t have many words, but that he understood everything. Instead, I decided to sit back and observe. We weren’t going to see this little boy again.
The little boy was with a sister, a grandmother, and a great-grandmother. What would they say when we left? What did the grandparents think? What do they know about autism? Can they tell he has autism? How will they explain my child to their grandchild?
You may be reading this, and you don’t know my child. But, the chances are you know a child (or an adult) with autism.
The current statistics state that 1 in 68 children is on the autism spectrum. For boys, the prevalence is higher with 1 in 42 boys on the autism spectrum.
That is a LOT of children.
Unfortunately, the statistics on adults on the spectrum are not as clear because many went undiagnosed or misdiagnosed as children.
Yet, despite the prevalence, people who don’t live with it don’t understand it.
Even 2 years after Enoch was diagnosed, a close family member asked me, “But, isn’t autism a psychological problem?”
Autism is a NEUROLOGICAL DISORDER.
NOT A PSYCHOLOGICAL PROBLEM.
(For the record, I was hurt that after 2 years, this family member had not done any research to educate themselves about my child. Why didn’t they ask questions before? It wasn’t that the question was wrong, it was the perceived notion that they did not care enough to learn.)
It makes me think: “if a family member of a child with autism cannot learn about the disorder, why would anyone else?”
So, here’s a little bit about autism:
Autism is a neurological disorder. Enoch’s brain works differently. He perceives things differently. Because of this, some situations are overwhelming for him and he may react in a way that does not seem typical.
Autism is a spectrum. I once read, “If you’ve met one child with autism, you’ve met one child with autism.” That statement is very true. Over the past several years, I have been able to build relationships with many families who have kiddos on the spectrum, and they are ALL DIFFERENT. While some children are able to talk well, others like Enoch, have very few words. While some may be perceived as anti-social, Enoch is very friendly. He desires so much to have friends.
However, there are things that pretty much everyone on the spectrum has in common (there do have to be guidelines to diagnose it after all).
If a child has not met developmental milestones at the usual time, this is a big red flag. Typically all skills will be delayed including fine motor, gross motor and oral motor. Enoch did not walk until he was 22 months old. At 6.5, he is starting to approximate words. He struggles greatly with fine motor skills. He is still no where close to being potty trained. (I have been changing diapers/ pull ups for 6.5 years straight with no end in sight.) He did not learn to jump until he was 5.5.
These delays are NOT caused by bad parenting. Please do not think poorly of a parent if their child is on the spectrum. They have been through a lot. They have had feelings of guilt. They have questioned if it is their fault. It isn’t. They love their child and they work SO hard to help their child on a daily basis. They take their children to therapy. They take their children to doctor’s appointments. They do not have much time alone because they are constantly alert in watching after their child. At this point, we don’t know WHAT causes autism. Science points to a combination of genetic and environmental factors. In Enoch’s case, I truly believe autism is something he was born with.
Communication struggles are highly prevalent in autism. While some can talk, they struggle with connecting with others. They may not speak unless prompted to do so. Enoch’s main method of communication is American Sign Language (ASL). He is also learning to use an Augmentative Alternative Communication (AAC) device in the form of an iPad app. You may see a child on an iPad and think poorly of the parents. But, that may be that child’s means of communicating. And both sign language and AAC do not hinder communication. They enhance it! Enoch is now starting to approximate words, and I attribute much of that to our work with ASL and AAC.
This does not mean that a child on the spectrum is not smart. Enoch is VERY smart. Despite not being able to talk, he is word smart. He can spell. He can read. He enjoys math and science. He is on a typical Kindergarten level in a majority of his subject areas. His biggest delay academically is in writing (because of poor fine motor skills).
Many people on the spectrum struggle with gastrointestinal issues. When Enoch was an infant, he would have a bowel movement once a week. I remember thinking that was so strange. I asked our pediatrician about it, and he said, “It must be Enoch’s normal.” For the past several years now, we have visited a gastroenterologist for both chronic diarrhea and chronic constipation. There aren’t really many answers for this link, but there is a lot of research in the past few years about the connection between the gut and the brain.
Many children on the spectrum are picky eaters. Enoch is one of them. I can quickly make a list of the limited foods he will eat, and it is getting worse. When we visited with a nutritionist about a year a half ago, and I listed what he will eat she said, “Yep! That sounds about like what all the kiddos on the spectrum that see me will eat.” She was however surprised by his love of hummus and bananas.
Social situations and highly stimulating situations can be overwhelming. Again, those on the autism spectrum perceive their surroundings differently from those who are neurotypical. Enoch tends to have what you might consider a meltdown in some of these situations. For him, haircuts are the absolute worst. Because of that, his hair was very long for a long time. This was much more involved than a child who did not want a haircut. As parents, we would tire of the constant comments. “He needs a haircut.” “He looks like a girl.” “Why don’t you cut his hair?”
Many on the spectrum are drawn to water. (And do not understand the danger associated with it.) This includes Enoch. He is extremely drawn to water. Extremely. I will turn down invitations to anything with a pool or close to a body of water or any kind because the thought of it brings me close to a panic attack (this is NOT an exaggeration). We cannot visit certain family members houses because they have a pool. Even if he had swim lessons (which we will do at some point), because of his poor motor skills, he would not be able to swim at this time. He just learned how to blow. Sort of.
“Drowning is among the leading cause of death of individuals with autism.” For more information on safety concerns associated with autism please visit: http://nationalautismassociation.org/resources/autism-safety-facts/
Children on the spectrum often experience sleep disturbances. Enoch has been an early riser as long as I can remember. He seems to be able to function on much less sleep than I have ever been able to. Most mornings, he is awake between 4:00 and 5:00. Sometimes, I hear him before that and need to go in his room to turn out his light, tell him to stop playing and try to get more sleep. At the recommendation of our pediatrician, we lock his door from the outside to avoid potential safety issues. However, we can hear him playing in his room, LOUDLY, so the rest of us don’t get much sleep either. Lately, he is reading to himself, which I love. Who would have thought he would become such a bookworm? Not me.
All this said, maybe your child knows another child on the spectrum. They know this other child is different. They don’t understand why this child is different. YOU may even look at this child and think they are “weird”. You may be concerned by their behavior because you don’t understand it yourself. I think it is important that children understand now, so that when they are older they learn to be compassionate and not mean when they encounter someone who is different from them.
(And I think this point goes along with ALL differences, but that’s a whole different blog post, and something I know less about.)
A few suggestions:
- Talk to the parent. Talk to me. Ask questions. There are not wrong questions. Most parents of children on the spectrum are open books. We want to share with you about our children. We want you to understand.
- Schedule a playdate. Let your kid spend some time with the child in a different setting. Perhaps they have only seen how they act at school or church. Sometimes those settings can be overwhelming. Be aware that the child’s parents may rather you come to their home (because their child is more comfortable there). Do it. Don’t take offense, it isn’t because we aren’t interested in coming to your home.
- Ask your kid questions. They may have more answers than they know. Ask them: “Why do you think _________ is different?” “Is there anything that ___________ likes to do that you like to do?” ” How does it make you feel when _______________ does that?”
- Remind your child that we are ALL different. The one thing we all have in common is that we were all made by a loving God IN HIS IMAGE. God made Enoch. When God made Enoch, He did not make a mistake.
I want you to talk to your kid about my kid.
[callout]This is written by Dawn Ratzlaff. She and her husband, Jon, live in Dallas, TX, with their 3 sons. Jon is a minister of music at a local church, and Dawn stays home with the kids. Enoch, their oldest, is 6.5, and has moderate- severe autism. Their twins, Malachi and Titus are (almost) 2. The 3 of them are a handful, and Dawn can’t imagine her life any other way. She enjoys cooking, baking, singing, playing the piano, writing, and drinking (lots of) coffee. If you want to follow her blog, you’ll find it here.[/callout]