This is beautiful, Skye. Your love for your child is so apparent through these heartfelt words. The last line says it all.
Being a parent is, IMO, the most heartbreaking assignment in the world. We can handle our own suffering, but knowing we’ve created a being that will suffer, perhaps because of us, can feel so unbearable.
In writing about your experience you gave us all- and yourself- the gift of connection. You’re not alone. You are building community here, among people who share your pain, and heartache, and yes- “other”-ness. 💓 Misfits perhaps, but misfits in solidarity.
Thank you so very much, Rachel. It's hard and yet already, the knowledge is helpful and permission-giving in terms of being able to just focus on learning what he needs and enjoying how he relates.
You're very right too, fellow misfit who is wonderful because of their misfit-ry (not in spite of it). I can't feel too bad for too long when all of the people I love best are similarly different and utterly themselves. As a dear neurodiverse friend put it, "Pffft. That's not even bad, you think being "neurotypical" means your kid will be OK? What if they're a crypto bro? What if they're one of those Instagram-face girls that injects concrete in their ass?"
Well, your sense of humor is unscathed, at least! This is hilarious. Indeed, a crypto bro or YouTube commentator blathering on about something meaningless would be much worse IMO. All the most empathic, curious, authentic folk tend to be “misfits” (but are we, really? Or can some folk just not stand the honest truth?)
Oh Skye. Been here, still here many days, sitting with those questions, dark feelings and fears, and at the same time the simplicity of who they are, the love. Thank you for writing it so honestly and purely. The weight of what we burdened them with is so heavy sometimes. Sitting with you there, reaching out a hand if you want one to hold. I know I do.
Thank you, Ray. I could definitely use a hand ... it helps knowing there are people sitting next to me in the same place, somewhere. I wish neither of us were here, but it helps. Or I would wish it, if wishing it didn't mean changing them.
Skye I was awake at 5am nursing my youngest and had a thought about this that I want to share, a different perspective. My husband and daughter were diagnosed with ASD on the same day. She was 4, he was 40. She will have so much that he didn't as a child; language with which to understand her brain and how it differs from other brains instead of bewilderment, celebration & support of her hyperfocus and special interests instead of mockery, acceptance of her sensitivities, sensory needs & big emotions instead of push through it, the list goes on. I really believe that her experience will therefore be different than his. We can't control the world or the meanies but her inner definition will be different than his, and maybe her interpretation of the meanies will be, too. And maybe your son's will be, too.
Thank you, Ray. I'm very privileged to receive this lovely thought of yours! I think you're absolutely right, now that I have had some time to reflect. My son is so happy and smiley and self-directed that he could easily have been left to his own devices at a different preschool and flown under the radar for who knows how long. Now, he'll know early that he thinks and learns a bit different and he'll have support in understanding himself.
In my own early life I knew something was different, but had no idea what so I just kept trying harder, smashing my head against normalcy with varying degrees of success. If I'd known "actually, you're right - you're not normal, but your brain works fine under the right conditions and with the right people to support you" I think my life would have been very different.
Exactly this!! It's the difference between thinking, I should be like everyone but I keep failing at it, to I am not like everyone and I this is what helps me thrive. What a difference!!
Sending you love, Skye. And gratitude for the deep recognition I felt in reading this.
You know better than me that, cognitively, we can know something but our nervous system has other ideas.
That precious boy IS lucky to have you. No-one will ever fight so hard to protect him. Or love him so easily and unconditionally. But he will be loved and protected all the same.
You turned up to the page on a hard day. If that were me, you'd be celebrating for me. Here is my celebration of you. 🎉🥳❤️
Thank you so much, I'm so grateful for your kindness.
You're absolutely right, I would celebrate you under such circumstances, so I must try and graciously accept the same! I am humbled and fortunate, and you are dead right. I would absolutely change the world for him (and maybe I'll have a crack knowing me) ... but not him, he's bloody marvellous.
You are most welcome. Thank you for taking the time to tell me this meant something to you, Holly. Feeling with you as a fellow traveller in this uncertain place.
Thank YOU, Hanna. I've thought about deleting it plenty, since it's a snapshot of a particular moment in time and an insight into a particular brain process. But I am grateful to know that even so, it is welcomed.
That was really well-written...not sure we have the same thoughts on neurodivergence or disability but you captured everything about that feeling of feeling that your son's in for a lifetime of bullsh*t (other people's bullsh*t, ignorant people's bullsh*t) extremely well. To a greater or lesser degree we *all* have to deal with other people's bull, however, so neurodivergence doesn't do much more than set you up for more of it. And I'm sure your love is more than a blanket against that, even though it probably doesn't feel like much, I can guarantee you it is more than enough.
Thank you Helen, my thoughts change a bit depending on the day and how much bullsh*t I have had to deal with. You are right that the love does not feel enough, and yet when I look at my own life and what it has meant when I have received it, I know it matters. I think it would have been so very helpful to know that I did tick a bit different from the other kids, that I wasn't going mad, that "just try harder" wasn't going to cut it.
I'm incredibly fortunate to have lots of neurodiverse people in my life that I love to pieces *because* of how they are, not in spite of it. Some of them are right here on Substack, and your note is a part of this. I appreciate you taking the time to write, I don't know your story but if you resonate with this then I wish you well.
PS how right you are about all of us having to deal with other people's bull!
Thanks! I always see it through the lens of disability: for example, when you're at home on your own, disability might look like having to have a turning circle for your wheelchair or bars instead of handles to open your cupboards. However, when you're outside of your own house, disability looks like judgement, exclusion, failed expectations, limitation, pity, stigma, 'suffering'. If the experience changes so radically depending on who is around you, it makes me wonder if the disability is the problem or if 90% of the problem isn't other people and their nonsense. My mom taught children with all ranges of disabilities for years, and she taught me from a very very young age that disability is just a different way of being - some people hear music with their ears and some feel the rhythm through their feet; some people walk with legs and some people with wheels, etc - that I really feel the vast 'tragedy' narrative is coming from the outside and people who insist on thinking that having two arms, two legs, two working ears, etc, is this kind of 'superior' blueprint, as if anyone who isn't like them is less-than (Imagine being so arrogant you think everyone wants to be or ought to be like you!) that that is very much my frame for the whole concept
Helen, life has gotten away on me and it has been a long time since you left this comment. But I have always intended to come back and let you know what it meant. What a perfectly simple, thoughtful, accepting lens through which to view the world. There is such a fine, fine line between hoping my child has a fulfilling, meaningful life and slipping into believing the only way to do that is to experience the world and move through it the same as the people who fit the widest part of the bell curve. Thank you for taking the time to write this. Thank you.
This is beautiful, Skye. Your love for your child is so apparent through these heartfelt words. The last line says it all.
Being a parent is, IMO, the most heartbreaking assignment in the world. We can handle our own suffering, but knowing we’ve created a being that will suffer, perhaps because of us, can feel so unbearable.
In writing about your experience you gave us all- and yourself- the gift of connection. You’re not alone. You are building community here, among people who share your pain, and heartache, and yes- “other”-ness. 💓 Misfits perhaps, but misfits in solidarity.
Thank you so very much, Rachel. It's hard and yet already, the knowledge is helpful and permission-giving in terms of being able to just focus on learning what he needs and enjoying how he relates.
You're very right too, fellow misfit who is wonderful because of their misfit-ry (not in spite of it). I can't feel too bad for too long when all of the people I love best are similarly different and utterly themselves. As a dear neurodiverse friend put it, "Pffft. That's not even bad, you think being "neurotypical" means your kid will be OK? What if they're a crypto bro? What if they're one of those Instagram-face girls that injects concrete in their ass?"
🤣🤣🤣 bless that friend for their truth -telling. It seems you're very blessed with the people around you and this makes my heart glad. ♥️
Well, your sense of humor is unscathed, at least! This is hilarious. Indeed, a crypto bro or YouTube commentator blathering on about something meaningless would be much worse IMO. All the most empathic, curious, authentic folk tend to be “misfits” (but are we, really? Or can some folk just not stand the honest truth?)
Perfectly put, Rachel. Every word ♥️
Jani x
Oh Skye. Been here, still here many days, sitting with those questions, dark feelings and fears, and at the same time the simplicity of who they are, the love. Thank you for writing it so honestly and purely. The weight of what we burdened them with is so heavy sometimes. Sitting with you there, reaching out a hand if you want one to hold. I know I do.
Thank you, Ray. I could definitely use a hand ... it helps knowing there are people sitting next to me in the same place, somewhere. I wish neither of us were here, but it helps. Or I would wish it, if wishing it didn't mean changing them.
Love to you and yours.
Skye I was awake at 5am nursing my youngest and had a thought about this that I want to share, a different perspective. My husband and daughter were diagnosed with ASD on the same day. She was 4, he was 40. She will have so much that he didn't as a child; language with which to understand her brain and how it differs from other brains instead of bewilderment, celebration & support of her hyperfocus and special interests instead of mockery, acceptance of her sensitivities, sensory needs & big emotions instead of push through it, the list goes on. I really believe that her experience will therefore be different than his. We can't control the world or the meanies but her inner definition will be different than his, and maybe her interpretation of the meanies will be, too. And maybe your son's will be, too.
Thank you, Ray. I'm very privileged to receive this lovely thought of yours! I think you're absolutely right, now that I have had some time to reflect. My son is so happy and smiley and self-directed that he could easily have been left to his own devices at a different preschool and flown under the radar for who knows how long. Now, he'll know early that he thinks and learns a bit different and he'll have support in understanding himself.
In my own early life I knew something was different, but had no idea what so I just kept trying harder, smashing my head against normalcy with varying degrees of success. If I'd known "actually, you're right - you're not normal, but your brain works fine under the right conditions and with the right people to support you" I think my life would have been very different.
Exactly this!! It's the difference between thinking, I should be like everyone but I keep failing at it, to I am not like everyone and I this is what helps me thrive. What a difference!!
Sending you love, Skye. And gratitude for the deep recognition I felt in reading this.
You know better than me that, cognitively, we can know something but our nervous system has other ideas.
That precious boy IS lucky to have you. No-one will ever fight so hard to protect him. Or love him so easily and unconditionally. But he will be loved and protected all the same.
You turned up to the page on a hard day. If that were me, you'd be celebrating for me. Here is my celebration of you. 🎉🥳❤️
Thank you so much, I'm so grateful for your kindness.
You're absolutely right, I would celebrate you under such circumstances, so I must try and graciously accept the same! I am humbled and fortunate, and you are dead right. I would absolutely change the world for him (and maybe I'll have a crack knowing me) ... but not him, he's bloody marvellous.
You are already changing worlds. In more ways than you can imagine.
You yourself are a prism, dear one. A refractor of light. Your purify colours from a single beam and they cascade from you in rainbows.
♥️
Yes same. Been there. Am still there. Thank you for your words, and for the prism image. I’ll carry that with me today.
You are most welcome. Thank you for taking the time to tell me this meant something to you, Holly. Feeling with you as a fellow traveller in this uncertain place.
Thank you for writing this, Skye, and sharing it with us. I felt it.
Thank YOU, Hanna. I've thought about deleting it plenty, since it's a snapshot of a particular moment in time and an insight into a particular brain process. But I am grateful to know that even so, it is welcomed.
That was really well-written...not sure we have the same thoughts on neurodivergence or disability but you captured everything about that feeling of feeling that your son's in for a lifetime of bullsh*t (other people's bullsh*t, ignorant people's bullsh*t) extremely well. To a greater or lesser degree we *all* have to deal with other people's bull, however, so neurodivergence doesn't do much more than set you up for more of it. And I'm sure your love is more than a blanket against that, even though it probably doesn't feel like much, I can guarantee you it is more than enough.
Thank you Helen, my thoughts change a bit depending on the day and how much bullsh*t I have had to deal with. You are right that the love does not feel enough, and yet when I look at my own life and what it has meant when I have received it, I know it matters. I think it would have been so very helpful to know that I did tick a bit different from the other kids, that I wasn't going mad, that "just try harder" wasn't going to cut it.
I'm incredibly fortunate to have lots of neurodiverse people in my life that I love to pieces *because* of how they are, not in spite of it. Some of them are right here on Substack, and your note is a part of this. I appreciate you taking the time to write, I don't know your story but if you resonate with this then I wish you well.
PS how right you are about all of us having to deal with other people's bull!
Thanks! I always see it through the lens of disability: for example, when you're at home on your own, disability might look like having to have a turning circle for your wheelchair or bars instead of handles to open your cupboards. However, when you're outside of your own house, disability looks like judgement, exclusion, failed expectations, limitation, pity, stigma, 'suffering'. If the experience changes so radically depending on who is around you, it makes me wonder if the disability is the problem or if 90% of the problem isn't other people and their nonsense. My mom taught children with all ranges of disabilities for years, and she taught me from a very very young age that disability is just a different way of being - some people hear music with their ears and some feel the rhythm through their feet; some people walk with legs and some people with wheels, etc - that I really feel the vast 'tragedy' narrative is coming from the outside and people who insist on thinking that having two arms, two legs, two working ears, etc, is this kind of 'superior' blueprint, as if anyone who isn't like them is less-than (Imagine being so arrogant you think everyone wants to be or ought to be like you!) that that is very much my frame for the whole concept
Helen, life has gotten away on me and it has been a long time since you left this comment. But I have always intended to come back and let you know what it meant. What a perfectly simple, thoughtful, accepting lens through which to view the world. There is such a fine, fine line between hoping my child has a fulfilling, meaningful life and slipping into believing the only way to do that is to experience the world and move through it the same as the people who fit the widest part of the bell curve. Thank you for taking the time to write this. Thank you.
💖