Thank you for giving me the freedom to say that autism is hard! For making me feel ok to own the hard in our life. I tried to see it all as a gift.. but I’ve had to admit defeat. It’s just hard. Not bad.. but not good either. My son Jordan is good! He is amazing and sweet.. and has the best smile and I dare you to try to not smile at his laugh.. it’s impossible! But life with him is hard.. autism is hard. He’s on the severe, nonverbal end of the spectrum.. we deal with self injuries and have been hurt ourselves. And he developed epilepsy in the last year.. that’s been the worst part so far. But it’s all worth it because he is worth it.
Thank you for speaking out about this and giving people like us a voice.
I also wanted to add.. when I first heard the statement about autism destroying families I didn’t agree. But then I thought about it some more. And the statistics are that over 80% (closer to 90%) of marriages where there is an autistic child end in divorce. So yes.. autism can destroy families. I’m thankful it hasn’t destroyed mine.. but I know it could. I’ve felt it.. marriage is hard.. add in a disability and it’s next level hard. But I’m thankful for my husband.. and our little family.
And I’m thankful for you! I always feel connected to you and your writing. It’s like you’re writing what’s on my heart.
I would give my life for my precious 6 year old nonverbal grandson to not have autism. That sentence does not erase the love I have for him or how I embrace every part of autism that he lives with. I cherish every iota of him, including the autism, but it is hard because autism is hard.
Thank you for saying all of this. Love it, especially that all feelings are valid.
Just wondering what it has to do with RFK? Isn’t autism always in the news in April?
Do you think he will actually improve the situation for people with disabilities? Does anything he has said align with the facts we already know about autism?
I just quickly got into an out of a discussion on another site with an individual who truly believes that there are no such people as those who are profoundly autistic. He is very, very high functioning living a completely independent life, cars, family, career…and no doubt he has his own issues. Either he has no idea how these children and adults struggle or he doesn’t care. I see each of your parents working so hard to help. Your kids have the best possible quality of life. To the extent that they are capable and it is safe they’re encouraged to make choices within the realm of their world. That is success.
Thank you. Thank you. My son is 32, and he suffers from autism. I don’t say that lightly. He suffers every day, and I see that struggle in him. I see his pain, I see his effort, I see how hard he tries. And he is one of the ones who was NOT born this way. I know he would give up the pain and the struggle if he could.
Thank you for sharing your journey so honestly and rawly. It really matters. And thank you always, so much, for sharing the joys. They make it worth while. YAY chicken wings!
A side effect of your grief for teen years is the joy you find in each "teen" thing he does- like the happiness that he talked back. I am sure that is not a joyous events in your pre-teen's life.
I have heard you talk about the OCD but I just realized it is at least two-fold. So not only must things be moved, but if possible they have to be hidden. And then it sounds like it is mainly living room - or just where he is, like his bedroom and downstairs?
We can not begin to understand the choices of OCD. I imagine he cannot say why particular things are an uncomfortable need to change while they also bring comfort...
Thank you, Kate. I love your honesty, candor and insights so much. I loved what you realized and spoke of about Cooper's opinion...what would he do if he could tell you? Would he choose not to be autistic? I also admire that you accept everyone's perspective and state that no one is wrong. I'm not as kind as you are because all of the comments from people on social media about how great it is to have an autistic child kind of enraged me. You've taught me a level of tolerance in my old-er age (almost 71). I also liked that you appreciate that autism is now more front and center because of RFK's comments and the reactions. That's true and I hadn't realized it! I have a 31-year-old son with IDD, not autism, but I read your first book and was deeply moved and, truthfully, saddened by the pain you experienced. It was also not all that different from my own story! Just wanted to say thank you for being you, for being courageous and accepting yourself for who you are. Sending you a virtual hug.
That's wonderful that you have kids with an opinion. I have 2 kids (the only kids) that struggle every day and I asked both of them on their AACs if I could take this all away, would they let me. They said yes. Do you know how disgustingly heartbreaking that is. Go for it RFK. HE IS RIGHT. Our journey is written. But I won't sit back and watch more kids struggle like mine do.
If he knew what he was talking about, great, but if he knew what he was talking about he wouldn't have said anything the way he said it. He will not know by September. The vaccine connection has be peer review studied over and over and over. If it is environmental, and it could be, aligning oneself with an administration that is gutting the EPA won't help anything.
" I wouldn't change you for the world but i would change the world for you!"
Thank you for giving me the freedom to say that autism is hard! For making me feel ok to own the hard in our life. I tried to see it all as a gift.. but I’ve had to admit defeat. It’s just hard. Not bad.. but not good either. My son Jordan is good! He is amazing and sweet.. and has the best smile and I dare you to try to not smile at his laugh.. it’s impossible! But life with him is hard.. autism is hard. He’s on the severe, nonverbal end of the spectrum.. we deal with self injuries and have been hurt ourselves. And he developed epilepsy in the last year.. that’s been the worst part so far. But it’s all worth it because he is worth it.
Thank you for speaking out about this and giving people like us a voice.
I also wanted to add.. when I first heard the statement about autism destroying families I didn’t agree. But then I thought about it some more. And the statistics are that over 80% (closer to 90%) of marriages where there is an autistic child end in divorce. So yes.. autism can destroy families. I’m thankful it hasn’t destroyed mine.. but I know it could. I’ve felt it.. marriage is hard.. add in a disability and it’s next level hard. But I’m thankful for my husband.. and our little family.
And I’m thankful for you! I always feel connected to you and your writing. It’s like you’re writing what’s on my heart.
I would give my life for my precious 6 year old nonverbal grandson to not have autism. That sentence does not erase the love I have for him or how I embrace every part of autism that he lives with. I cherish every iota of him, including the autism, but it is hard because autism is hard.
Thank you for saying all of this. Love it, especially that all feelings are valid.
Just wondering what it has to do with RFK? Isn’t autism always in the news in April?
Do you think he will actually improve the situation for people with disabilities? Does anything he has said align with the facts we already know about autism?
I’m not trying to instigate, but truly asking.
I just quickly got into an out of a discussion on another site with an individual who truly believes that there are no such people as those who are profoundly autistic. He is very, very high functioning living a completely independent life, cars, family, career…and no doubt he has his own issues. Either he has no idea how these children and adults struggle or he doesn’t care. I see each of your parents working so hard to help. Your kids have the best possible quality of life. To the extent that they are capable and it is safe they’re encouraged to make choices within the realm of their world. That is success.
Is it the experience he wants?
Thank you. Thank you. My son is 32, and he suffers from autism. I don’t say that lightly. He suffers every day, and I see that struggle in him. I see his pain, I see his effort, I see how hard he tries. And he is one of the ones who was NOT born this way. I know he would give up the pain and the struggle if he could.
Thank you for sharing your journey so honestly and rawly. It really matters. And thank you always, so much, for sharing the joys. They make it worth while. YAY chicken wings!
A side effect of your grief for teen years is the joy you find in each "teen" thing he does- like the happiness that he talked back. I am sure that is not a joyous events in your pre-teen's life.
Such a profound thought of love for Cooper, what does he want.
That is what every one needs to consider is "what does the child want."
Yes - the context is "Autism in the News"
I have heard you talk about the OCD but I just realized it is at least two-fold. So not only must things be moved, but if possible they have to be hidden. And then it sounds like it is mainly living room - or just where he is, like his bedroom and downstairs?
We can not begin to understand the choices of OCD. I imagine he cannot say why particular things are an uncomfortable need to change while they also bring comfort...
"I would give my right arm for my son to be able to talk."
Same.
Would grab my car keys to head to the procedure before that sentence was even finished.
Thank you, Kate. I love your honesty, candor and insights so much. I loved what you realized and spoke of about Cooper's opinion...what would he do if he could tell you? Would he choose not to be autistic? I also admire that you accept everyone's perspective and state that no one is wrong. I'm not as kind as you are because all of the comments from people on social media about how great it is to have an autistic child kind of enraged me. You've taught me a level of tolerance in my old-er age (almost 71). I also liked that you appreciate that autism is now more front and center because of RFK's comments and the reactions. That's true and I hadn't realized it! I have a 31-year-old son with IDD, not autism, but I read your first book and was deeply moved and, truthfully, saddened by the pain you experienced. It was also not all that different from my own story! Just wanted to say thank you for being you, for being courageous and accepting yourself for who you are. Sending you a virtual hug.
That's wonderful that you have kids with an opinion. I have 2 kids (the only kids) that struggle every day and I asked both of them on their AACs if I could take this all away, would they let me. They said yes. Do you know how disgustingly heartbreaking that is. Go for it RFK. HE IS RIGHT. Our journey is written. But I won't sit back and watch more kids struggle like mine do.
If he knew what he was talking about, great, but if he knew what he was talking about he wouldn't have said anything the way he said it. He will not know by September. The vaccine connection has be peer review studied over and over and over. If it is environmental, and it could be, aligning oneself with an administration that is gutting the EPA won't help anything.
The chicken wing!!!👏👏👏