That’s a great question. Maybe because people want to see—and want to be—a hero. I don’t see myself as a hero. We’re just living the life we have in the best way we can. That’s not profound or wise. It’s reality. And I’m okay with my reality.
It is all about acceptance and the perspective we bring into the situation (mine shifts daily sometimes). It is tempting to view a difficult period as a temporary detour, a long wait until you can finally "rejoin the road." However, true forward motion begins when you realize that this isn't a detour; this is the road. * The Cost of Comparison: Looking backward forces you to view your current self as a "corrupted version" of who you used to be.
The Power of Presence: By stopping the demand that your life become something else, you gain the clarity to see the unique beauty—and the unique duties—of the present.
Thank you so much for this beautiful, honest account of the journey into acceptance that I think every SEND parent has to go on, but it sounds like yours has been more brutal than most. I think people looking for Reason (which is most people) see parent carers and have to 'resolve' us somehow, so we become 'inspirational' even 'saintly'. But this just shows that their own journey of acceptance has not properly begun. Some things just don't tie up neatly, and there is enough beauty in that in itself.
It’s part of human nature to look for sense in the senseless, so they tell me. And I agree a lot of the inspiration visions comes from people who aren’t engaged in their own journeys. What gets me as those people, all people, are always already on their journey, some just don’t know it yet.
Oh, yes Cooky - I side eye things that look too neatly packaged these days, beautiful messes feel more 'lived-in' and real...perhaps that's why I'm not too judge-y looking in the mirror 🤣
" this just shows that their own journey of acceptance has not properly begun"; true! Plus from what I've encountered, I think that personal journey differs carer to carer. No linear or tidy progressions either.
I think I'm right in saying that SEN or SEND (Special Educational Needs and Disabilities) is mainly a UK term -so sharing the definition here. I updated the post to share that Emma, Bud' s daughter, has pachygyria.
If we are talking specifically in the educational setting it’s SPED in the US (SPecial EDucation). Outside of that there is no real consensus and actually there is quite a bit of heated (and not always civil) debate about it.
I don't know, Cooky -perhaps Bud or someone else in the US will know, or maybe it's already understood. I just wanted to spell it out for folks in case someone didn't recognise the term. I didn't know it until recently.
That’s a great question. Maybe because people want to see—and want to be—a hero. I don’t see myself as a hero. We’re just living the life we have in the best way we can. That’s not profound or wise. It’s reality. And I’m okay with my reality.
It is all about acceptance and the perspective we bring into the situation (mine shifts daily sometimes). It is tempting to view a difficult period as a temporary detour, a long wait until you can finally "rejoin the road." However, true forward motion begins when you realize that this isn't a detour; this is the road. * The Cost of Comparison: Looking backward forces you to view your current self as a "corrupted version" of who you used to be.
The Power of Presence: By stopping the demand that your life become something else, you gain the clarity to see the unique beauty—and the unique duties—of the present.
Thanks Allie
Thank you so much for this beautiful, honest account of the journey into acceptance that I think every SEND parent has to go on, but it sounds like yours has been more brutal than most. I think people looking for Reason (which is most people) see parent carers and have to 'resolve' us somehow, so we become 'inspirational' even 'saintly'. But this just shows that their own journey of acceptance has not properly begun. Some things just don't tie up neatly, and there is enough beauty in that in itself.
Thanks, Cooky.
It’s part of human nature to look for sense in the senseless, so they tell me. And I agree a lot of the inspiration visions comes from people who aren’t engaged in their own journeys. What gets me as those people, all people, are always already on their journey, some just don’t know it yet.
Oh, yes Cooky - I side eye things that look too neatly packaged these days, beautiful messes feel more 'lived-in' and real...perhaps that's why I'm not too judge-y looking in the mirror 🤣
" this just shows that their own journey of acceptance has not properly begun"; true! Plus from what I've encountered, I think that personal journey differs carer to carer. No linear or tidy progressions either.
I think I'm right in saying that SEN or SEND (Special Educational Needs and Disabilities) is mainly a UK term -so sharing the definition here. I updated the post to share that Emma, Bud' s daughter, has pachygyria.
Thanks Victoria, what's the US equivalent term? SEND is just nice and short which is why I used it
If we are talking specifically in the educational setting it’s SPED in the US (SPecial EDucation). Outside of that there is no real consensus and actually there is quite a bit of heated (and not always civil) debate about it.
I don't know, Cooky -perhaps Bud or someone else in the US will know, or maybe it's already understood. I just wanted to spell it out for folks in case someone didn't recognise the term. I didn't know it until recently.