“Why it was so challenging for my son to simply exist.” Oof, this line got me Heather. Thank you for helping me to understand-- for cracking the door of your life open just a little bit. This piece will help me to see others in my life a little more clearly. Courage, dear heart.
"But that’s what nobody seems to understand (except other parents of children with special needs) — it did have to be this way. I did have to dig my heels in. I did have to walk away. Anything less than that would’ve devalued my own flesh and blood. I am well aware of the fact that, in some circles, I’m probably perceived as something of a troublemaker. I’m okay with that."
This.
My husband I recently relocated 1000 miles away from a home I loved more than any other place we lived... in order to be closer to our young adult daughter with chronic illnesses. I felt so misunderstood as we explained the move, and yet I also felt deep in my bones that it was 100% the right thing to do. "Anything less would have devalued my own flesh and blood."
I can, too, so relate to feeling misunderstood. My conversations always start out trying to first explain myself, often before the person in front of me even knows the subject matter.
I like your idea better. I need to just be okay with being misunderstood. To live in freedom of accepting myself as I am, thoughts and all! It’s my thoughts that always seem to get in my way.
In the end, it has to be less exhausting, less threatening. If I can’t simply accept myself without feeling the need to “explain,” … I think I’m done with that now. Thank you, Heather!
It's such an ongoing lesson, isn't it? Sometimes I stop myself mid-sentence now. I remind myself that I don't need to explain myself before anybody has even asked for an explanation. When they do ask, I know that they probably care about my answer. That gift—of someone soliciting my inner thoughts—helps me to slow down and offer a much more thoughtful response than I would've offered had nobody solicited my opinion. I know, at some level, I've already been seen. The act of asking after someone, after all, is an act of understanding in and of itself.
I spent a long time feeling like I had to explain things to everybody and it got so tiring. People who don't have autistic kids just don't get it.
Although it does feel lonely sometimes I think my inner introvert is okay with it. LOL. I just find things to do on my own. Just like you with your bike rides, I go out and spend time taking pictures. Very therapeutic and relaxing!
What a beautiful gift to find solace in taking photographs. There's something poetic in that — in choosing to express yourself with something that transcends even words. Thank you so much for sharing this, Kristin.
Beautiful post Heather. I totally get the being misunderstood bit and find it refreshing to simply accept this. No one really gets it unless they have been through it themselves, the need to fight for our young people because they can't advocate for themselves. As a mum of an autistic daughter with PDA , I also sadly understand the isolation and sense of loneliness. It simply goes with the territory of trying to manage your child's different needs and they just don't cope unfortunately unless these are met. It's a tough gig. Sending hugs x
Thanks so much, Fiona. There is indeed a freedom in simply accepting it all, isn't there? I used to try to explain meltdowns to every grocery cashier and bank teller: "He has autism." I started hearing "I assumed" enough times that I realized I was wasting my energy even bothering with an explanation. Since I've stopped explaining myself, I hear more stories: "Does he have autism?" Yes, he does! "My grandson has autism. Is he verbal?" No, he isn't. "My grandson isn't, either." My silence, I've found, has given others a blank canvas — just by virtue of our coming into a place. And, honestly, I'd rather hear someone else's story than repeat our story time and time again.
Thank you for this essay. (Also, I’m a huge Lord Peter fan and you’re going to have so much fun. I don’t think “Whose Body?” is the strongest of the series so you have a lot to look forward to.)
Thanks Margaret! I finished "Whose Body?" a little while ago (I actually wrote this post in January) and it did end up being a bit of a letdown for me. I'm reading "Dorothy and Jack" right now (on the friendship of C.S. Lewis and Dorothy Sayers) and I'm planning to read "Gaudy Night" in the fall!
Even those of us with a level one Autism have a very hard time being around people. And yes the more people, the worse it is. And we don’t really know why either.
I have a theory that the brain subconsciously understands how genetically different and more fragile it, and the rest of the body, is. So it needs to generate a compensatory level of “anxiety” to act as a survival mechanism.
Bob, thanks for your comment. I'd love to hear your insight on successfully navigating church communities. You are certainly under no obligation to share, but I'd be very interested to hear your feedback if you have time!
Sadly, I may be one of the worst people to consult on navigating church communities. This is because my own experience has proven that people, for whatever reason, do not want to know about the reasons behind odd behaviors.
There seems to be a simplistic, fearful inclination to have prejudicial reactions to those who are different. It seems that they are leaning toward the most base, animalistic instinct of destroying that which is defective.
Having said that, I am optimistic that it is possible to find those who do want to know about differences and how to function well alongside them. In your case, you are an advocate for your child. I have no automatic advocate. Yes there are a few who are willing to speak on my behalf. But it seems they are often speaking to the blind and the deaf.
Odd behaviors are unquestionably intentional and evil and cannot be tolerated by a great many people.
“Why it was so challenging for my son to simply exist.” Oof, this line got me Heather. Thank you for helping me to understand-- for cracking the door of your life open just a little bit. This piece will help me to see others in my life a little more clearly. Courage, dear heart.
Thank you so much for these lovely words, Elizabeth. I appreciate you!
You are such a beautiful writer, Heather. I so appreciate you sharing your words with us!
Wow. Thank you so much, Katie. That means a great deal coming from you.
"But that’s what nobody seems to understand (except other parents of children with special needs) — it did have to be this way. I did have to dig my heels in. I did have to walk away. Anything less than that would’ve devalued my own flesh and blood. I am well aware of the fact that, in some circles, I’m probably perceived as something of a troublemaker. I’m okay with that."
This.
My husband I recently relocated 1000 miles away from a home I loved more than any other place we lived... in order to be closer to our young adult daughter with chronic illnesses. I felt so misunderstood as we explained the move, and yet I also felt deep in my bones that it was 100% the right thing to do. "Anything less would have devalued my own flesh and blood."
There is so much we can't put into words. I'm glad this piece resonated with you, Wendy.
Oh Heather,
your love and steadfast resolve reminds me of my own mama.
I can imagine how hard it must be not being able to communicate with your son, but know that He SEEs you.
I firmly believe he knows how hard you fight for him, and that he is proud to have you as his mom.
Take courage, the light is there.
Your comment honors me deeply, Kathleen. Thank you so much for your generous words. I'm so grateful I had the opportunity to meet you this winter.
I can, too, so relate to feeling misunderstood. My conversations always start out trying to first explain myself, often before the person in front of me even knows the subject matter.
I like your idea better. I need to just be okay with being misunderstood. To live in freedom of accepting myself as I am, thoughts and all! It’s my thoughts that always seem to get in my way.
In the end, it has to be less exhausting, less threatening. If I can’t simply accept myself without feeling the need to “explain,” … I think I’m done with that now. Thank you, Heather!
It's such an ongoing lesson, isn't it? Sometimes I stop myself mid-sentence now. I remind myself that I don't need to explain myself before anybody has even asked for an explanation. When they do ask, I know that they probably care about my answer. That gift—of someone soliciting my inner thoughts—helps me to slow down and offer a much more thoughtful response than I would've offered had nobody solicited my opinion. I know, at some level, I've already been seen. The act of asking after someone, after all, is an act of understanding in and of itself.
I spent a long time feeling like I had to explain things to everybody and it got so tiring. People who don't have autistic kids just don't get it.
Although it does feel lonely sometimes I think my inner introvert is okay with it. LOL. I just find things to do on my own. Just like you with your bike rides, I go out and spend time taking pictures. Very therapeutic and relaxing!
Thank you, Heather!😃
What a beautiful gift to find solace in taking photographs. There's something poetic in that — in choosing to express yourself with something that transcends even words. Thank you so much for sharing this, Kristin.
Beautiful post Heather. I totally get the being misunderstood bit and find it refreshing to simply accept this. No one really gets it unless they have been through it themselves, the need to fight for our young people because they can't advocate for themselves. As a mum of an autistic daughter with PDA , I also sadly understand the isolation and sense of loneliness. It simply goes with the territory of trying to manage your child's different needs and they just don't cope unfortunately unless these are met. It's a tough gig. Sending hugs x
Thanks so much, Fiona. There is indeed a freedom in simply accepting it all, isn't there? I used to try to explain meltdowns to every grocery cashier and bank teller: "He has autism." I started hearing "I assumed" enough times that I realized I was wasting my energy even bothering with an explanation. Since I've stopped explaining myself, I hear more stories: "Does he have autism?" Yes, he does! "My grandson has autism. Is he verbal?" No, he isn't. "My grandson isn't, either." My silence, I've found, has given others a blank canvas — just by virtue of our coming into a place. And, honestly, I'd rather hear someone else's story than repeat our story time and time again.
Thank you for this essay. (Also, I’m a huge Lord Peter fan and you’re going to have so much fun. I don’t think “Whose Body?” is the strongest of the series so you have a lot to look forward to.)
Thanks Margaret! I finished "Whose Body?" a little while ago (I actually wrote this post in January) and it did end up being a bit of a letdown for me. I'm reading "Dorothy and Jack" right now (on the friendship of C.S. Lewis and Dorothy Sayers) and I'm planning to read "Gaudy Night" in the fall!
Thanks for sharing this Heather.
Even those of us with a level one Autism have a very hard time being around people. And yes the more people, the worse it is. And we don’t really know why either.
I have a theory that the brain subconsciously understands how genetically different and more fragile it, and the rest of the body, is. So it needs to generate a compensatory level of “anxiety” to act as a survival mechanism.
Bob, thanks for your comment. I'd love to hear your insight on successfully navigating church communities. You are certainly under no obligation to share, but I'd be very interested to hear your feedback if you have time!
Sadly, I may be one of the worst people to consult on navigating church communities. This is because my own experience has proven that people, for whatever reason, do not want to know about the reasons behind odd behaviors.
There seems to be a simplistic, fearful inclination to have prejudicial reactions to those who are different. It seems that they are leaning toward the most base, animalistic instinct of destroying that which is defective.
Having said that, I am optimistic that it is possible to find those who do want to know about differences and how to function well alongside them. In your case, you are an advocate for your child. I have no automatic advocate. Yes there are a few who are willing to speak on my behalf. But it seems they are often speaking to the blind and the deaf.
Odd behaviors are unquestionably intentional and evil and cannot be tolerated by a great many people.
Sorry for the bitter sarcasm on my last sentence.
No! Don’t apologize! I totally understand your frustration.