Our nephew Michael is Autistic. He can speak. But his mother is under constant criticism for keeping Michael at home. She refuses to move him into a home. She wants to take care of him. He is in his twenties now. I’m on her side. She just needs support. She loves him so much. That is all that matters.
I am in full support of keeping families together if at all possible and I think separating disabled children is not usually the best solution. Michael’s mother needs support, not criticism for trying to do the best she can for her son.
Thank you for those answers. My heart goes out to you. It is perfect timing for me to hear how you cope with it. I have been scared and worried about my daughter, Molly Rose, who is unable to speak or walk, with multi-disabilities. She's a real sweetheart, yet has developed screaming episodes and I worry how someone else will handle that. Thank you for bringing me into the here and now. I have to trust in the future.
I have no children and know so little about Autism. But let me say that your answer to Debbie’s thoughtful question gave me a wealth of understanding about all of it, without knowing any of it.
It is love this dedicated and pure that will envelop him through strife and joy, in presence and memory. It is love this unconditional that can save us all.
Hi Allison. I work in the estate planning field, including planning for children with special needs. The best advice I can give is buy a boatload of life insurance and stick it in a "supplemental needs" trust. Our #1 job as a parent is to raise our children to become independent, financially and otherwise. Since many children with special needs will always be "children," their parents must provide for the financial well being of their child for the rest of that child's life. That's a long time, and a lot of money. Think of it as spending their future inheritance now to guarantee a lifetime of income. Good financial advisors can reverse engineer the amount of death benefit needed by projecting it out to life expectancy of the child, adjusting upwards for inflation. If you "buy too much insurance" in hindsight, that's not such a bad thing - as a second place prize you've created wealth for your son and other family members. Look at the IRR - the internal rate of return on the death benefit at your life expectancy. You'll be surprised at how high it is (why is too complicated for this comment). Think of the insurance premium as a deposit in an account that, from the moment you make that first deposit, you are guaranteed a certain return - the death benefit is the amount that your deposits (premiums) will grow to, so to speak. Make sure you get a guaranteed death benefit policy, pay the premiums on time, and you can put that puppy to bed. We call it "Lock in a Legacy," and cross it off your "to-do" list. Sorry to be such a geek . . . “I am what I am, and that's all that I am.” Popeye.
Thank you for sharing from such a deep and personal place, Allison. Tears were rolling down my face as I finished reading your answer. With love and respect, I will hold John Henry gently in my heart and keep you both in my prayers.
I’m constantly amazed at your ability as someone with your history and artistic sensibilities to share your innermost vulnerabilities so freely with us! 🎼💖💕
Your writing is always so vulnerable, Allison; I feel like I'm reading a close friend. I admire your mindfulness and care with John Henry. I agree that a huge parenting hurdle is coming to terms that we have no control over our children's health and future even though we cling to that need. You are not alone. Much love to your sweet family.
Thank you for your insightful and touching post. I have a severely disabled daughter, and you nailed it - the uncertainty, quest for useful information, many deep breaths and prayer rooted in the beauty of the here and now
Debbie’s question was the one that hit me hardest, as well. As did your answer. I’ve told you that when I think of the ideal Mother out there in the World, I always picture you. JH’s Mama. You are a gift to all who encounter you, your love and your undying wisdom. JH could not have a better guide as he grows, wrapped in the loving cocoon you do your best to keep him safe in. He WILL be the butterfly you hope for. He is blessed with the best God could give him in you. Sending my love and some serious respect this morning, as a parent. Trying to stay in the present. This forum is like an old friend already! ox JB
I was a single parent until my son was about 12. I leave for work early in the morning and had to physically pick him up and carry him with me for a long while, But after he got about old enough I would leave and I would lean over him , say a prayer of protection. Then kiss him on the forehead. I thought he was asleep. He is 35 now and years later I told him I prayed over him. He said I know Dad. You hold out hope for that day your son has his say. And maybe he can tell you one day that he heard.
My goodness! You have really fought the good fight! My son, Jacque,was bipolar. I fought and scratched to try and give him what he needed. I am not going into it all here but in 2008 he overdosed on his attempt at self medicating. We just spread his ashes on our land in Arkansas. He would be in his 40's.
Thank you so much for sharing yourself with the world. We all need to see home runs!
Oh, Janet. I am so very sorry to hear about such a great loss. Who knows why we must endure such things other than to bear witness for others? I don’t. Lots of love to you. 🤍
Not a question, but I often find that I have (too) long responses to your incredible blog posts. The following is a Facebook post by Jennifer Litton Tidd that resonated with me, and I think will resonate with you, too. I've referred in the past to JH as one of my (our) greatest teachers, and while I realize that's mighty personal, a statement like this illustrates perfectly the "why" behind why I say that. :
I think I need to share this story because people need to understand how to appropriately interact with other humans, and how to be a better ally to disabled people.
I took my 15 year old autistic son to the pool for the first time this summer a couple weeks ago. He LOVES swimming. He was laughing out loud and smiling for the first two hours he was there. His joy was infectious and most were happy to see it. Two women in the pool though, were visibly annoyed, and decided it was time to shush him.
Q-man doesn’t do being shushed. And he self-advocated and said, “No no shhhh, Q is HAPPY!” We were at a pool with a big waterslide and lots of kids yelling, laughing and splashing. They decided to shush Q again for a second time about 15 minutes later. The first time they shushed him, I saw that he was standing up for himself, so I only moved closer, so he’d see I was there for backup, and that I approved of his self-advocacy. The second time they shushed him, I jumped in and walked over to them and told them to stop talking to my son. He’s being no louder than anyone else, that it was clear from their reactions and the situation, it wasn’t noise they objected to, but HIS sounds specifically. They apologized and then left him alone the remainder of the time we were there.
A woman approached me later in the locker-room to tell me she loves the sound of laughter of “special needs kids” and “intellectually challenged kids like your son.” Clearly, she was trying to be supportive, but let me be clear about several things. First off, his needs aren’t “special.” The need to be treated with respect, dignity, and support for his feelings aren’t special. These are needs any human has. Secondly, my son is not ID. Don’t assume to know someone’s diagnosis. He’s just a fellow human who was happy and laughing; that’s all this person knew, and all that needed to be said. There is nothing wrong at all with ID people, so it wasn’t an insult, just inaccurate. But I don’t need to justify his laughter or behavior by explaining to every stranger that he’s autistic. My son doesn’t exist to be everyone else’s teachable moment.
And thirdly, in my van on the way home, I thought more about it. It seems to me rather than whispering support in a locker-room, I’d have much preferred public support for my son. If I’d witnessed the same situation, I’d have responded to the shushing of a person like my son, “I love the sound of your laughter and happiness, thanks for sharing your joy.” Don’t other him. His autism in this situation wasn’t relevant. He also is impaired with his speaking communication, but his hearing is crystal clear. So talking about him in the third person rather than TO him about his laughter is erasure. Always assume competence first, please. He likes being talked to and complimented, JUST LIKE YOU.
He was just one of many happy people swimming at the pool; that’s all. His noises and physicality of being autistic aren’t typical of other 15 year olds, but they are perfectly natural, and how he expresses joy. I really don’t get why he can’t just be out in the world as a happy person laughing, and people can’t just see him as a fellow human having a good time.
Please do support someone being ganged up on, but please have the courage to do it in the situation without othering them further. Laughter is laughter, and all he was doing was laughing. Why should there be all this undercurrent and weirdness about a kid laughing and having fun at the pool?
I see it as yet another form of neurodivergent tone-policing. Not only do we have to express frustration or anger like NTs, but also, LAUGHTER? A person can’t just be elated and laugh how he wants without being policed?
I LOVE this post. And it just taught me something - the “special” thing has never sat well with me. My son is just my son and his needs are his needs just like my needs are mine. Why do they have to be “special?”
Stories like these make me feel less alone in my experience — we can go through so much anxiety trying to make sure we don’t “bother” anyone with our differences — and you know what? That’s crazy. We deserve to be here too, and in FULL. Thank you so much for posting this. 🤍
Our nephew Michael is Autistic. He can speak. But his mother is under constant criticism for keeping Michael at home. She refuses to move him into a home. She wants to take care of him. He is in his twenties now. I’m on her side. She just needs support. She loves him so much. That is all that matters.
I am in full support of keeping families together if at all possible and I think separating disabled children is not usually the best solution. Michael’s mother needs support, not criticism for trying to do the best she can for her son.
❤❤
Thank you for those answers. My heart goes out to you. It is perfect timing for me to hear how you cope with it. I have been scared and worried about my daughter, Molly Rose, who is unable to speak or walk, with multi-disabilities. She's a real sweetheart, yet has developed screaming episodes and I worry how someone else will handle that. Thank you for bringing me into the here and now. I have to trust in the future.
Hang in there. I know some days it feels like you won’t be able to, but you do. Remember to breathe. 🤍
I have no children and know so little about Autism. But let me say that your answer to Debbie’s thoughtful question gave me a wealth of understanding about all of it, without knowing any of it.
It is love this dedicated and pure that will envelop him through strife and joy, in presence and memory. It is love this unconditional that can save us all.
Hi Allison. I work in the estate planning field, including planning for children with special needs. The best advice I can give is buy a boatload of life insurance and stick it in a "supplemental needs" trust. Our #1 job as a parent is to raise our children to become independent, financially and otherwise. Since many children with special needs will always be "children," their parents must provide for the financial well being of their child for the rest of that child's life. That's a long time, and a lot of money. Think of it as spending their future inheritance now to guarantee a lifetime of income. Good financial advisors can reverse engineer the amount of death benefit needed by projecting it out to life expectancy of the child, adjusting upwards for inflation. If you "buy too much insurance" in hindsight, that's not such a bad thing - as a second place prize you've created wealth for your son and other family members. Look at the IRR - the internal rate of return on the death benefit at your life expectancy. You'll be surprised at how high it is (why is too complicated for this comment). Think of the insurance premium as a deposit in an account that, from the moment you make that first deposit, you are guaranteed a certain return - the death benefit is the amount that your deposits (premiums) will grow to, so to speak. Make sure you get a guaranteed death benefit policy, pay the premiums on time, and you can put that puppy to bed. We call it "Lock in a Legacy," and cross it off your "to-do" list. Sorry to be such a geek . . . “I am what I am, and that's all that I am.” Popeye.
Thank you for sharing from such a deep and personal place, Allison. Tears were rolling down my face as I finished reading your answer. With love and respect, I will hold John Henry gently in my heart and keep you both in my prayers.
I’m constantly amazed at your ability as someone with your history and artistic sensibilities to share your innermost vulnerabilities so freely with us! 🎼💖💕
It’s a treasure to me… I’m always so appreciative of Allison’s post/writings
Your writing is always so vulnerable, Allison; I feel like I'm reading a close friend. I admire your mindfulness and care with John Henry. I agree that a huge parenting hurdle is coming to terms that we have no control over our children's health and future even though we cling to that need. You are not alone. Much love to your sweet family.
Thank you for your insightful and touching post. I have a severely disabled daughter, and you nailed it - the uncertainty, quest for useful information, many deep breaths and prayer rooted in the beauty of the here and now
Debbie’s question was the one that hit me hardest, as well. As did your answer. I’ve told you that when I think of the ideal Mother out there in the World, I always picture you. JH’s Mama. You are a gift to all who encounter you, your love and your undying wisdom. JH could not have a better guide as he grows, wrapped in the loving cocoon you do your best to keep him safe in. He WILL be the butterfly you hope for. He is blessed with the best God could give him in you. Sending my love and some serious respect this morning, as a parent. Trying to stay in the present. This forum is like an old friend already! ox JB
I was a single parent until my son was about 12. I leave for work early in the morning and had to physically pick him up and carry him with me for a long while, But after he got about old enough I would leave and I would lean over him , say a prayer of protection. Then kiss him on the forehead. I thought he was asleep. He is 35 now and years later I told him I prayed over him. He said I know Dad. You hold out hope for that day your son has his say. And maybe he can tell you one day that he heard.
I know he hears. Thank you for this. 🤍
My goodness! You have really fought the good fight! My son, Jacque,was bipolar. I fought and scratched to try and give him what he needed. I am not going into it all here but in 2008 he overdosed on his attempt at self medicating. We just spread his ashes on our land in Arkansas. He would be in his 40's.
Thank you so much for sharing yourself with the world. We all need to see home runs!
Oh, Janet. I am so very sorry to hear about such a great loss. Who knows why we must endure such things other than to bear witness for others? I don’t. Lots of love to you. 🤍
Not a question, but I often find that I have (too) long responses to your incredible blog posts. The following is a Facebook post by Jennifer Litton Tidd that resonated with me, and I think will resonate with you, too. I've referred in the past to JH as one of my (our) greatest teachers, and while I realize that's mighty personal, a statement like this illustrates perfectly the "why" behind why I say that. :
I think I need to share this story because people need to understand how to appropriately interact with other humans, and how to be a better ally to disabled people.
I took my 15 year old autistic son to the pool for the first time this summer a couple weeks ago. He LOVES swimming. He was laughing out loud and smiling for the first two hours he was there. His joy was infectious and most were happy to see it. Two women in the pool though, were visibly annoyed, and decided it was time to shush him.
Q-man doesn’t do being shushed. And he self-advocated and said, “No no shhhh, Q is HAPPY!” We were at a pool with a big waterslide and lots of kids yelling, laughing and splashing. They decided to shush Q again for a second time about 15 minutes later. The first time they shushed him, I saw that he was standing up for himself, so I only moved closer, so he’d see I was there for backup, and that I approved of his self-advocacy. The second time they shushed him, I jumped in and walked over to them and told them to stop talking to my son. He’s being no louder than anyone else, that it was clear from their reactions and the situation, it wasn’t noise they objected to, but HIS sounds specifically. They apologized and then left him alone the remainder of the time we were there.
A woman approached me later in the locker-room to tell me she loves the sound of laughter of “special needs kids” and “intellectually challenged kids like your son.” Clearly, she was trying to be supportive, but let me be clear about several things. First off, his needs aren’t “special.” The need to be treated with respect, dignity, and support for his feelings aren’t special. These are needs any human has. Secondly, my son is not ID. Don’t assume to know someone’s diagnosis. He’s just a fellow human who was happy and laughing; that’s all this person knew, and all that needed to be said. There is nothing wrong at all with ID people, so it wasn’t an insult, just inaccurate. But I don’t need to justify his laughter or behavior by explaining to every stranger that he’s autistic. My son doesn’t exist to be everyone else’s teachable moment.
And thirdly, in my van on the way home, I thought more about it. It seems to me rather than whispering support in a locker-room, I’d have much preferred public support for my son. If I’d witnessed the same situation, I’d have responded to the shushing of a person like my son, “I love the sound of your laughter and happiness, thanks for sharing your joy.” Don’t other him. His autism in this situation wasn’t relevant. He also is impaired with his speaking communication, but his hearing is crystal clear. So talking about him in the third person rather than TO him about his laughter is erasure. Always assume competence first, please. He likes being talked to and complimented, JUST LIKE YOU.
He was just one of many happy people swimming at the pool; that’s all. His noises and physicality of being autistic aren’t typical of other 15 year olds, but they are perfectly natural, and how he expresses joy. I really don’t get why he can’t just be out in the world as a happy person laughing, and people can’t just see him as a fellow human having a good time.
Please do support someone being ganged up on, but please have the courage to do it in the situation without othering them further. Laughter is laughter, and all he was doing was laughing. Why should there be all this undercurrent and weirdness about a kid laughing and having fun at the pool?
I see it as yet another form of neurodivergent tone-policing. Not only do we have to express frustration or anger like NTs, but also, LAUGHTER? A person can’t just be elated and laugh how he wants without being policed?
I LOVE this post. And it just taught me something - the “special” thing has never sat well with me. My son is just my son and his needs are his needs just like my needs are mine. Why do they have to be “special?”
Stories like these make me feel less alone in my experience — we can go through so much anxiety trying to make sure we don’t “bother” anyone with our differences — and you know what? That’s crazy. We deserve to be here too, and in FULL. Thank you so much for posting this. 🤍
Thank you Allison! Thank you for your sweet heart and uplifting words.