He has a Good Heart
Some of my newer readers haven’t had a chance to go back and read our story from the beginning. Every now and again I will bring up something again for their benefit. As a reminder, all of my blogs are available to read at my website, www.glendakastle.com. Go to the home page and scroll down, clicking on “older” until you get to the beginning or to where you left off.
Others have been faithfully reading weekly for the past two and a half years. When I bring something up again, oftentimes it is a great opening for a topic I want to write about that is currently happening. If you’re memory is anything like mine, you may appreciate being reminded of these past writings.
When Travis was a young boy I began to research and read everything I could get my hands on to help him to become the best version of Travis possible. He went from diagnosis to diagnosis, as the many professionals we worked with had different ideas on what may be causing his various symptoms.
One day Travis saw a book that I had been reading with a picture of a young boy on the cover. The boy looked to be about the same age as Travis and he was holding a turtle. I have a picture of Travis holding a turtle.
Travis asked me what the book was about. I told him that I was reading everything I could get my hands on about children like him, so that I could get ideas on how to help him feel better.
Travis was first diagnosed with ADHD. The next diagnosis was bipolar disorder. The name of the book was, “The Life of a Bipolar Child, What Every Parent and Professional Needs to Know”, by Trudy Carlson. Trudy was not only the writer, but the mom of Ben, the boy on the cover.
Travis had yet to be diagnosed with autism. Travis was diagnosed with autism when he was eleven years old. He does have significant mental health issues as well. Over the years we heard many different mental health diagnoses from the professionals, including bipolar disorder, chronic depression, chronic anxiety, schizophrenia, schizoaffective disorder and borderline personality disorder.
As far as bipolar disorder, I have never seen Travis have periods of abnormally-elevated mood. But the bottom line for me is that what we call his diagnosis, the label, doesn’t really matter. The goal is to get him the help he needs to live his best life.
As a side note, we purchased a life insurance policy for Travis when he was born. The policy was for $35,000, enough to cover funeral expenses, just in case. The policy also allows for increasing coverage, I think maybe at four or five different intervals as your child ages. Our insurance agent told us that purchasing this type of policy was important for two reasons. One is that young families oftentimes do not have the funds for a funeral in the horrible event of their child’s death.
I don’t know about you, but I have seen several Go-Fund Me pages asking for help in this regard.
But more importantly, it’s important to have a life insurance policy before any diagnoses. If your child is later diagnosed with something like asthma, there is a good chance that they will not be able to ever purchase a life insurance policy. I am almost certain with all the different diagnoses that Travis has been given, it would be impossible to buy life insurance. Even though some of the diagnoses may be inaccurate. Once it shows up in your medical file, it is taken into consideration.
The opportunity to increase the coverage has come up a couple of different times already. So far we have passed on the opportunity because Travis is not married and does not have children. There is currently no reason to have a larger pay-out.
We did the same for our daughter Corey. Once she became an independent adult we cashed out the policy. Basically reimbursing ourselves for the premium over the years.
I bring this up because some of my readers may have young children and not have as thorough of an insurance agent as we did.
Travis then asked me if I was going to write a book about him some day. I told him that I might just do that one day. He asked me what I would call the book, and I answered without even thinking, “No Stone Left Unturned”.
I’m sure that came to mind, because I had already resolved to un-turn every stone to get him the help he needed. And in doing so, I used the phrase over and over.
Over the years the idea of writing a book percolated in the back of my mind. Corey and a couple of my friends nudged me to move forward with that idea. The thought being that we could take the long and winding road that we lived in our experiences, and shorten the path for others by sharing our experiences and outcomes.
The idea of writing a book seemed overwhelming to me. Corey suggested that I started with a weekly blog, and here we are. Two and a half years later.
I bring all of this up because there is apparently some controversy around parents of children with autism sharing information about their children online.
This week I came across an article on www.Today.com, “Why there’s a war between parents of children with autism and autistic adults”.
The following is an excerpt from the article:
Aug. 13, 2021, 1:10 PM MDT / Source: TODAY
When Eileen Lamb’s toddler son, Charlie, was diagnosed with autism spectrum disorder, she didn’t have a big support network nearby. So, like many other isolated and overwhelmed moms, she turned to social media.
“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”
“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”
Lamb thought the vitriol might subside when she opened up on social media about her own autism diagnosis, which she received a year or so after Charlie’s.
“It actually got worse,” Lamb recalled. “People told me that I had self-internalized ableism, that I was self-hating. ... I felt like I was being bullied into silence.”
In the age of social media, parents everywhere grapple with issues of sharing — and potentially oversharing — information about their kids.
For parents whose children have been diagnosed with autism, ADHD and other neurological conditions, decisions about what to share online can be even more fraught. A post that one parent views as “raising awareness” or “seeking acceptance” could be fodder for future embarrassment and regret when the child being posted about becomes an adult.
Autistic teenagers and adults are on a crusade to help neurodiverse people get a fair shot in workplaces, academic institutions and other settings. In recent years, autistic self-advocates have popularized the hashtag #ActuallyAutistic and are pushing to rename “Autism Awareness Month” in April to “Autism Acceptance Month.” Many call out characterizations of autism on social media that they find offensive or misleading.
“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued.
“They say, ‘Oh, poor me, my child had a meltdown today.’”
Some parents of autistic children share posts that are excessively personal, including video footage of their kids having meltdowns, holding up signs describing the medications they’re taking and wearing diapers or sitting on toilets well after the age of 10.
Autistic adults tend to hate posts like these. They say that in addition to violating children’s privacy, the posts do not reflect the experiences of most autistic people.
“These parents are adults, so they should know better,” Seigler said. “Once a post is online, it’s there forever.”
The existence of such posts spotlights a painful reality: Autism is a spectrum, and parents of kids on the profoundly disabled end of that spectrum are often overwhelmed and terrified for their children’s future. Some parents choose to vent their feelings in public forums, and they can be vilified for it.
“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum.”
‘Nothing about us without us’
John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.
In a recent Psychology Today essay with the headline “Your Autistic Child Is Perfect and May Need Help,” Robison addressed the autism wars being waged online.
“In the autism community, we often say, ‘Nothing about us without us,’ meaning any conversation about autistic people should be led by autistic people,” Robison wrote. “It makes sense, but it’s not the whole story in this case. There is another equally valid perspective. ‘Nothing about us without us’ applies equally well to parenting. ... If the topic is parenting an autistic child, what better voices than autistic parents?”
Robison, 64, of Western Massachusetts, told TODAY that he understands why many parents feel blindsided and afraid when their children are diagnosed with autism — an experience shared by 1 in 54 children in the United States.
“Many parents see it as a terrible, terrifying disability,” Robison said. “They wonder: ‘Will my child be able to live on their own when I’m gone? Will they find a partner?’ It’s scary! These parents feel a lot of stress and a lot of fear. ...
“But when they write things online like ‘I wish I could cure my kid,’ autistic people who are very verbal online can take great offense. They’ll say, ‘Oh, you say you don’t want people like me to be born? You don’t want your son to be born?’ And no, those parents are not saying that at all. They’re saying they think their son has a horrible disability and they wish he didn’t.”
Robison said the passage of time often helps many parents realize they didn’t need to be so fearful.
“Most autistic people become less disabled as they get older — and sometimes we get strikingly less disabled,” said Robison, who has found success over the years as an engineer, teacher, writer, business owner, photographer and public speaker. “At age 6, I had no friends, I threw things, I bit people — you wouldn’t have been so sure about my future if you had seen me back then. I acquired more skills as I got older. If you were just looking at the 6-year-old me, you’d have no idea of what was to come.”
Robison said he’s grateful his mother didn’t write a blog about “little John Elder” during those early years: “I’d have been pretty embarrassed if I read it when I was 21.”
‘We're desperate for change’
The behaviors of autistic people can vary so much — from slight social quirks to severe disabilities. For parents of profoundly disabled children with autism, isolation is common because outings and social interactions can be so challenging.
“I believe children are only as healthy as their caregivers — and to help other caregivers, it does involve peeling back the curtain a little bit and allowing people into our lives,” said Jessica Ronne, 44, a Michigan mom who blogs at Jess + The Mess and whose teenage son Lucas has multiple diagnoses that will require total care for the rest of his life; severe autism is just one of them.
“Most of us are not sharing our experiences to diminish our child’s privacy or to embarrass our children — we’re doing it because we’re desperate for change,” Ronne said, noting that many overloaded parents need help. “People can’t fix what they don’t know about.”
Kate Swenson, 38, a Minnesota mom who has chronicled her life with her severely disabled autistic son, Cooper, attained a blinding level of attention online after a video of her crying in her car went viral on TODAY’s social media platforms in 2018.
“I got death threats. I had a woman tell me she was going to kidnap Cooper. People told me I don’t love him because I said autism is hard,” Swenson recalled.
Today, Swenson is careful about what she posts on her main public Facebook page, which has nearly 700,000 followers. She’s more forthright about caregiving realities in a closed, paid supporter group she’s created on Facebook.
“It feels like severe autism is the forgotten end of the spectrum. It’s so hidden away for safety reasons,” Swenson said. “Kids like Cooper were institutionalized not that long ago — just 30 to 40 years ago. That was the choice parents felt they had to make. If I don’t share his story, how will kids like Cooper ever get the support they need?”
Lamb, the mom of Charlie in Austin, Texas, said she’s determined to keep sharing posts about her son online. She expects to deal with hostility as a result.
“Other parents are starting to stay quiet online because they’re too afraid, but I can’t do that,” Lamb said. “I’ve found a strength I didn’t know I had.”
The article goes on to give parents tips before they share experiences online.
This article was very thought provoking for me. Travis did give me permission to write his story. At the same time, Tracy and I are his legal guardians because he is unable to make sound decisions.
Travis gives me ideas of what he wants me to write about and even say. I have to remind him that I am telling the story from a mother’s perspective. There is actually quite a bit of what is going on in his life that I keep private, even when he tells me I should write about it.
I do belong to a couple of social media groups. The two groups that I belong to, for the most part, are a safe place for overwhelmed moms to vent. Because Travis is 28, I am further along in our story than most of the parents that post. I don’t do any venting to the group. I find myself mainly mentoring other parents in these groups. If they are going through something that we have experienced, I share how we got through it.
If a parent asks a question about services or benefits that I know the answer to, I share it in the comments. I don’t need to vent there, I have my own support group, YOU.
I do not fall in the category of moms that Siegler (the autistic mom of autistic children) calls out in the article. I don’t use my child for sympathy or have a poor me attitude.
I fall into the category of raising awareness or seeking acceptance for my boy.
Autism is a spectrum, our story is about our experiences with Travis. What I am experiencing as Travis’s mom.
John Elder Robison says both perspectives are valid. The perspective of the autistic community and the perspective of parents raising autistic children. I know this won’t surprise you but I have read his book, “Look me in the eye, my life with asperger’s”. A dear friend of mine gave it to me years ago.
I have also mentioned Kate Swenson in a previous blog. I saw the video she posted that went viral in 2018 of her crying in her car. My heart ached for her and I left her a comment offering support.
Maybe it’s because my reach is smaller than the bloggers mentioned in the article, I haven’t had any negative or hateful comments on my blogs. Just love and support. Thank you.
In the end, I came to the conclusion that Travis would want me to share his story. He has a huge heart. He errs on the side of helping people, without considering his own safety. It’s his go to. It’s extremely frustrating for us. Because we understand the safety issues of him helping people he hardly knows.
Just this week there were two separate occasions where we found someone we didn’t know to be part of Travis’s tribe sleeping on his couch in the middle of the day. What might we find if we showed up at his house every day?
Travis will share his food, his cigarettes, even the gas in his car by giving rides, even though his budget is very limited. He knows we will not let him go hungry.
It’s hard to parent because we understand that we are responsible for him, but not everyone he meets. If I won the lottery, I would absolutely research how some of the money could benefit the homeless population.
It’s hard to parent because I also don’t want to parent away his compassion for others. They may or may not be exploiting him, but he doesn’t get that. All he sees is a person in need.
If his story in some way helped one person, he would want me to share it. Even the hard parts.
How can I be so sure? Because I told him that I was reading the book with the boy on the cover with the hope of finding ideas that could help him. And he immediately asked if I was going to write a book about him someday. Meaning maybe his story could help others down the road.
The most amazing thing about Travis? He has a good heart. A heart for helping others.
Oh, and writing a book? The idea is still percolating.
“When you have a good heart: you help too much, you trust too much, you give too much, you love too much. And it seems like you’re the one that gets hurt the most.” - Author Unknown
“I heard someone say, don’t cross oceans for people who wouldn’t cross a puddle for you. Which I thought was good advice. But then someone else spoke up and said, No. Do it. Do cross oceans for people. Love all people. No conditions attached. No wondering whether or not they are worthy. Cross oceans, climb mountains. Life and love isn’t about what you gain, it’s about what you give.” - Author Unknown
Travis holding a turtle.