Thank you for the insightful post (as always). I feel like any tools labeled “special needs” are like wedding cakes automatically priced higher when the typical counterpart remains low. We’re going through this in our search for a stroller so our child can access public places better. On community, I feel a lot like you - I don’t participate in parent communities or autistic communities both are entrenched in their perspectives so much it’s suffocating. I do follow certain advocates and parents whose stories help me see our own story. Like you, there’s not just one ND person in our home, I’m raising two very different kids who share paper diagnosis but one is high support needing care likely for life. My worries for her are very different than for her sister. I rarely see her represented in any place (for example she speaks but 99% in scripts so cannot converse and in reality she can’t communicate in the majority settings). I feel your loneliness and know the struggle of creating or finding solutions that are rarely used in or out of the autistic communities. I’ve been telling people lately she presents as an atypical autistic because frankly it’s true and that makes parenting her a whole other ballgame. Wishing you all the best as always.
Mostly I don't comment because I don't have much to say that is truly productive. I feel empathy for you and your family, but I have no experience with your specific situation, so I don't feel like I can contribute. However, I feel led to tell you that I 💯 support you doing whatever you need to do to make life work for your family. I definitely wish you had more access to the care Aiden needs. You are in my thoughts daily.
Is it more helpful to you to subscribe here on substack or on patreon? My son was non speaking for years and self harming... he still struggles with speaking when over stimulated and at other times and does self harm when upset or during a meltdown. I also struggle with speaking when overly stimulated and sometime lose almost all my words for a time. So I am thinking I may not belong in the shoe string tier but am not sure? What do you think? What would be the difference between the cottage fries tier, the general patreon tier and the substack subscription plan? Would I sign up for multiple ones?
when my son was young, his cherubic face, his humming instead of speaking, and his tendency to freeze rather than fight or flight elicited kind engagement from adults. now that he is almost at the age of legal majority and is substantially bigger than me, his overwhelm responses are . . . unpalatable to the general public and often traumatic to us both. it terrifies me to have *the discussions* about anticipated, inevitable interactions with law enforcement.
the few adults who have known him since toddlerhood - the adult women, at least - are the only ones who i can trust to share any my experiences mothering him, and they, too, are scattered far and wide as our families' lives diverged. the adult men - including, i'm sad to say, his father and older brother - have moved out of our family home, insistent that he learn to comply with neurotypical standards but refusing to participate in his attempts to reach such unrealistic and unreasonable goalposts with any sense of compassion or care.
i am my son's only person. he and i both know that. it is a source of comfort to us both, and also a source of terror. my own disabilities detract from my capacity to support him with his, and there is rarely any respite for either of us. all of the grandparents have either passed away or disowned us years ago when they gave up hope of having a *normal* grandson. i've been unschooling him since i first became aware of what was being done to him in public school under the guise of a middle school IEP. *the community* has expanded at a surface level, sort of, but authentic advocacy burns out quickly in a consumer-minded economy.
i am grateful for every word you write. each story is a cool sip of water to a parched throat that cannot form its own. when i read your words, i feel less lonely, even though my son and i don't belong with anyone but ourselves, at least right now.
When it comes to behaviors that are harmful/dangerous to self and/or others, I have NO issue with trying the respectful use of ABA when other things have been tried and don't work. In other behavioral areas, I think it can be abusive for many children and parents need to tread very lightly. I don't think there is an across the board rule or one size fits all for every child and every circumstance. I have experienced all of this with my own child.
I am also AuDHD, like my son and also used to self harm in the past. As far as my son's harmful and dangerous behaviors, we have tried all kinds of therapies with some help and also the no punishment/negative consequences approach for a year or more. The no punishment/consequences didn't work for a number of things for my kiddo. While I absolutely hate there being negative consequences for his harmful or destructive behaviors during a meltdown when he has lost control, the use of natural consequences and some negative consequences has been helpful and actually helped to lesson some of the behaviors and their frequency. Teaching him to not harm himself or others and property is necessary. Their are social consequences for such things, educational consequences, financial consequences, and as he gets older (he is 11) there would be legal consequences... in some cases even now if he did the stuff to strangers or in public, there would be legal consequences. I am terrified that someone, some day when he is older, will call security or the police instead of giving him the space he needs during a meltdown and reminders not to self harm or harm others, and that the situation will then escalate and uninformed police or security will harm or kill him. For some things and situations, the use of punishment and rewards absolutely can be helpful and necessary.
Now that he is older, after trying every possible therapy to lower his anxiety and having an honest and open discussion with him, we decided to medicate him for anxiety. It runs in my family big time and I take medication for it myself. This has helped to bring the level of anxiety down enough where he can often make choices for himself about what he needs and behaviors, mostly before or to avert a meltdown but also sometimes during one. He has way less self harming now. He is taking a minimum moderately effective and safe dose and is carefully monitored. We will be slowly adding adhd medication soon to help him focus and to slow down his impulsivity so that he has time and the mental ability to make more choices on whether or not to act on an impulse. He has expressed a ton of frustration with his brain/ADHD and although he doesn't get down on himself currently (he has in the past), he is very aware and unhappy with the struggle. He is also very vocal after the fact about the process of having an impulse to do something, doing it right away and then having remorse and feeling bad about what he did and wondering if he is a bad kid. He has consequences socially and at school and he has hurt us at home. We will tread very slowly and carefully as always and talk openly with him and listen to him on this journey he is taking and that we are taking as a family.
We have worked with the folks at his school and everyone under the sun to educate them kindly on the best ways to meet him where he is at to minimize struggles and create an environment where he will thrive... but many of these people refuse to be educated, even people who are kind and loving in some ways can be very rigid and ignorant in others. This is the whole world and he does have to live in it. We will continue to try our best to educate other people, but we need to teach him how to help himself as well. The Beanie is a great idea, good for you!
You are doing right by your child. One size doesn't fit all. I think it is necessary to try other therapies, and you have done that, but when your child has self/other harming, dangerous or destructive behaviors, at some point, you gotta say "okay these other therapies aren't working, lets try respectfully and carefully administered ABA for these particular behaviors." If you didn't show your child any way to control themselves, you would be leaving them to hold the bag. (The bag of social consequences, educational consequences and legal and possibly life threatening consequences.) And that is unfair to your child. SO... you do what you feel is best and what needs to be done. I fully support you, for what it's worth. Sorry for the novelette.
I don’t have any answers, but I am profoundly grateful for your courage to keep sharing what is real and what needs to be heard. I feel so much care and compassion for you and your family 🧡
Thank you for the insightful post (as always). I feel like any tools labeled “special needs” are like wedding cakes automatically priced higher when the typical counterpart remains low. We’re going through this in our search for a stroller so our child can access public places better. On community, I feel a lot like you - I don’t participate in parent communities or autistic communities both are entrenched in their perspectives so much it’s suffocating. I do follow certain advocates and parents whose stories help me see our own story. Like you, there’s not just one ND person in our home, I’m raising two very different kids who share paper diagnosis but one is high support needing care likely for life. My worries for her are very different than for her sister. I rarely see her represented in any place (for example she speaks but 99% in scripts so cannot converse and in reality she can’t communicate in the majority settings). I feel your loneliness and know the struggle of creating or finding solutions that are rarely used in or out of the autistic communities. I’ve been telling people lately she presents as an atypical autistic because frankly it’s true and that makes parenting her a whole other ballgame. Wishing you all the best as always.
Mostly I don't comment because I don't have much to say that is truly productive. I feel empathy for you and your family, but I have no experience with your specific situation, so I don't feel like I can contribute. However, I feel led to tell you that I 💯 support you doing whatever you need to do to make life work for your family. I definitely wish you had more access to the care Aiden needs. You are in my thoughts daily.
Is it more helpful to you to subscribe here on substack or on patreon? My son was non speaking for years and self harming... he still struggles with speaking when over stimulated and at other times and does self harm when upset or during a meltdown. I also struggle with speaking when overly stimulated and sometime lose almost all my words for a time. So I am thinking I may not belong in the shoe string tier but am not sure? What do you think? What would be the difference between the cottage fries tier, the general patreon tier and the substack subscription plan? Would I sign up for multiple ones?
i get it. i mean, i get it that no one gets it.
when my son was young, his cherubic face, his humming instead of speaking, and his tendency to freeze rather than fight or flight elicited kind engagement from adults. now that he is almost at the age of legal majority and is substantially bigger than me, his overwhelm responses are . . . unpalatable to the general public and often traumatic to us both. it terrifies me to have *the discussions* about anticipated, inevitable interactions with law enforcement.
the few adults who have known him since toddlerhood - the adult women, at least - are the only ones who i can trust to share any my experiences mothering him, and they, too, are scattered far and wide as our families' lives diverged. the adult men - including, i'm sad to say, his father and older brother - have moved out of our family home, insistent that he learn to comply with neurotypical standards but refusing to participate in his attempts to reach such unrealistic and unreasonable goalposts with any sense of compassion or care.
i am my son's only person. he and i both know that. it is a source of comfort to us both, and also a source of terror. my own disabilities detract from my capacity to support him with his, and there is rarely any respite for either of us. all of the grandparents have either passed away or disowned us years ago when they gave up hope of having a *normal* grandson. i've been unschooling him since i first became aware of what was being done to him in public school under the guise of a middle school IEP. *the community* has expanded at a surface level, sort of, but authentic advocacy burns out quickly in a consumer-minded economy.
i am grateful for every word you write. each story is a cool sip of water to a parched throat that cannot form its own. when i read your words, i feel less lonely, even though my son and i don't belong with anyone but ourselves, at least right now.
When it comes to behaviors that are harmful/dangerous to self and/or others, I have NO issue with trying the respectful use of ABA when other things have been tried and don't work. In other behavioral areas, I think it can be abusive for many children and parents need to tread very lightly. I don't think there is an across the board rule or one size fits all for every child and every circumstance. I have experienced all of this with my own child.
I am also AuDHD, like my son and also used to self harm in the past. As far as my son's harmful and dangerous behaviors, we have tried all kinds of therapies with some help and also the no punishment/negative consequences approach for a year or more. The no punishment/consequences didn't work for a number of things for my kiddo. While I absolutely hate there being negative consequences for his harmful or destructive behaviors during a meltdown when he has lost control, the use of natural consequences and some negative consequences has been helpful and actually helped to lesson some of the behaviors and their frequency. Teaching him to not harm himself or others and property is necessary. Their are social consequences for such things, educational consequences, financial consequences, and as he gets older (he is 11) there would be legal consequences... in some cases even now if he did the stuff to strangers or in public, there would be legal consequences. I am terrified that someone, some day when he is older, will call security or the police instead of giving him the space he needs during a meltdown and reminders not to self harm or harm others, and that the situation will then escalate and uninformed police or security will harm or kill him. For some things and situations, the use of punishment and rewards absolutely can be helpful and necessary.
Now that he is older, after trying every possible therapy to lower his anxiety and having an honest and open discussion with him, we decided to medicate him for anxiety. It runs in my family big time and I take medication for it myself. This has helped to bring the level of anxiety down enough where he can often make choices for himself about what he needs and behaviors, mostly before or to avert a meltdown but also sometimes during one. He has way less self harming now. He is taking a minimum moderately effective and safe dose and is carefully monitored. We will be slowly adding adhd medication soon to help him focus and to slow down his impulsivity so that he has time and the mental ability to make more choices on whether or not to act on an impulse. He has expressed a ton of frustration with his brain/ADHD and although he doesn't get down on himself currently (he has in the past), he is very aware and unhappy with the struggle. He is also very vocal after the fact about the process of having an impulse to do something, doing it right away and then having remorse and feeling bad about what he did and wondering if he is a bad kid. He has consequences socially and at school and he has hurt us at home. We will tread very slowly and carefully as always and talk openly with him and listen to him on this journey he is taking and that we are taking as a family.
We have worked with the folks at his school and everyone under the sun to educate them kindly on the best ways to meet him where he is at to minimize struggles and create an environment where he will thrive... but many of these people refuse to be educated, even people who are kind and loving in some ways can be very rigid and ignorant in others. This is the whole world and he does have to live in it. We will continue to try our best to educate other people, but we need to teach him how to help himself as well. The Beanie is a great idea, good for you!
You are doing right by your child. One size doesn't fit all. I think it is necessary to try other therapies, and you have done that, but when your child has self/other harming, dangerous or destructive behaviors, at some point, you gotta say "okay these other therapies aren't working, lets try respectfully and carefully administered ABA for these particular behaviors." If you didn't show your child any way to control themselves, you would be leaving them to hold the bag. (The bag of social consequences, educational consequences and legal and possibly life threatening consequences.) And that is unfair to your child. SO... you do what you feel is best and what needs to be done. I fully support you, for what it's worth. Sorry for the novelette.
Your voice is so so important - thank you for sharing all of this.
I don’t have any answers, but I am profoundly grateful for your courage to keep sharing what is real and what needs to be heard. I feel so much care and compassion for you and your family 🧡