Susan's Blog

Thursday, October 25, 2018

Autumn Chill

Fall is the empty nest time of year; even the trees must deal with the fact of their seeds dropping off to start new lives. And I am an old mother, dealing with my children’s departure for years. My son Nat has lived away from us for eleven years. But this particular autumn I find myself unable to shake my sadness, the feeling that there has been a permanent shift, and that I’m not ready for it.

Like many families, Nat, who is my oldest moved into a residential school at 17. Unlike many families, this was a school for students with severe autism.  The move out of the home is so dreaded by most autism families that it even has a special term: going residential. For right or wrong, sending your autistic kid away feels like you failed him somehow.

For years I fought this feeling. I told myself that Nat “had to go.” He was out of control. He acted wild, like a stranger, he reminded me of the Warner Brothers Tasmanian Devil, a whirlwind of scary biting and terror. I’m sorry, but this is how I remember it when I think back. That, and I wonder if his brothers weathered it okay, and I cling to the memory of how easily he left us, how quickly he was absorbed into that group home community.  “So he must have needed a different environment,” people reason. They believe this, it is easier for them to decide that because Nat’s difficult behavior subsided, it means that he found peace in the strict schedule of the residence, comfort in the consistency and similarity of school/home routines.

But now that Nat is an adult, I experience him differently. He has learned, over time, to stretch out the moments between the spark and his response. There is space between us now, where I can now see how he is feeling, and not simply that he is feeling.  He has developed a wisdom and the strength to pull back and let me see him. He has learned how to be vulnerable and dwell in that particular discomfort that used to cause him to erupt.  When did this happen? Why did this happen?

I look back and I see the memories of my time with Nat, and the conclusions I made back then. One particular memory that I make myself look at is the night I cried out, “If you keep hitting people you won’t be able to live here.” To which (I think) he answered, “you be good.” Even if he did not answer that way, what I remember is that he took it in. It didn’t change anything; he went on lashing out at us without warning, until finally my husband and I decided we needed him to move out.

Was that the moment when he suddenly realized he was not a part of me, that Mommy was not Forever, and that he might find himself alone?  Over the years it has broken my heart to think, yes, maybe. I did the worst thing a mother can do: I threatened abandonment.

It is not just with Nat. I remember when my middle son, Max, wanted to sit on my lap, which was occupied by his infant baby brother Ben. And I told him, “You have to be a big boy now.”  Snap.

I hate the cruelty there, those moments of being only human, because I believe with all my heart that my children deserve better than that.

But lately I wonder. Do they also need to see the grotesquely flawed parent? Is it possible that children must somehow experience that break with their parent, in order to separate later in life? Max is now 26 and living in New York, working in the film industry. He is and always was a peaceful, accepting soul. When he’s around I feel a sense of comfort and easy joy. So it must be that his separation was healthy.

So there are times when I really worry that Nat’s separation was born of that horrible threat I made. Or maybe it occurred when he went residential. In those dark times, like during the rapidly shortening autumn days, I would see Nat’s independence as a sad thing, something he doesn’t quite understand, something that might actually feel like a punishment.

And indeed, he anxiously insists on staying at our home on the weekends, even now that he’s living with two wonderful young women who love him like a brother. I have no doubt that he adores Elaine and Miyabe right back; and yet he must stay with us on the weekends.

I’m leaving out something really important here. Two years ago he came back home to live with us for nine months. Nine months — the time of complete human gestation. You are born after nine months.  In coming back home to live, did he experience some kind of rebirth? Some kind of very old healing? He certainly healed on a physical level — the reason we took him home was that he showed up one weekend with mysteriously broken ribs. I took him back and got to know him all over again. And he me.

He’s settled happily with Elaine and Miyabe. But there is still that insistence to come home on the weekends. And at the same time, though, there is this new breath he takes when he is becoming upset, a short, flappy moment where he is able to look at me and wait for me to understand what’s wrong. His faith in me makes me calm and confident and then I actually do understand. And then we work it out.

Last week, when we were creating his calendar with Elaine and Miyabe, we floated it out to him that he was not going to sleep at home Saturday night. He listened intently. I then offered that the week after he would sleep at home the entire weekend. “Okay,” he said.

“Wow, he was so chill,” exclaimed Miyabe in that Millennial way of hers. He certainly was. And I’m wondering about new Chill Nat. Or is it old Chill Nat, who went residential calmly — successfully, at the age of 17? Maybe that really was good for him. Maybe my stupid moment of threatening him was not the fateful moment of separation. Did his time away teach him that taking space was really okay, not a punishment? For in doing so I believe he learned to take a moment — a chill moment — and work it out with us. He learned that he can come back anytime, and so he doesn’t have to.

And a new possibility occurs to me, a phoenix risen from the ashes of all my doubt. The smokey plume of hope, that this empty nest of mine is never completely empty. He can always come home again. Because now Nat and I trust each other.







Beautifully written, Susan! LOVE reading your blog! You are a great writer!

“easily he left us, how quickly he was absorbed into that group home community.”

Working in the group home business, I see this all the time. Families worry their ASD loved one will be devastated and generally unhappy without them. But most often they are content in their new home and families are stunned by this. The Moms are the ones who are devastated.

Same goes for a residential house managers. They get so attached to the Individuals that when they retire or leave the company, they are sure the person will be so upset and emotionally devastated because they left. Most often, they aren’t upset at all.

Perhaps most of us with ASD kids find this hard to accept because it hurts to know that they have very little attachment to us. I always thought that “the experts” were wrong concerning attachment and bonding issues ( in some people, not all), but as a Mother with a son who struggles with ASD, and a professional working with developmentally delayed,I concede, maybe there is something to it. I don’t know. All I know is what I see and it’s common.

And if so, perhaps it is a blessing from God. No one wants their loved one to be unhappy. Mothers: We’re unhappy if they are unhappy and sometimes we are unhappy when they don’t give a hoot and we think they should! Haha!

Hope I haven’t offended anyone. I worry about that. We ASD parents suffer enough. Don’t want to hurt anyone’s feeling unintentionally.

Thanks for sharing this. Always enjoy reading your work because it resonates to the bone!

— added by Win on Thursday, October 25, 2018 at 3:59 pm

Thank you so much, Winnie! For reading and your sensitive, insightful comments.

— added by Susan Senator on Thursday, October 25, 2018 at 4:05 pm

As usual so beautifully said. My stomach and heart seize up whenever I think of my adult daughter moving out. I simply cannot wrap my mind around it.

My shameful confession is that I once said to my daughter that “someone will call the police if you don’t stop screaming” when the library was closed when it should have been opened. (I actually thought someone was going to, people were staring and cars were slowing down.) That was a year ago and she still repeats it when she gets upset.

— added by Susan on Thursday, October 25, 2018 at 4:49 pm

Ah, Susan… [hugs]

— added by Susan Senator on Thursday, October 25, 2018 at 4:50 pm

Our ASD son is 17, and in at the height of his explosive anger and other challenging behaviors. In our state, there are no residential autism schools. I wish there were, as I think he would have been happy to go, and would have benefited. I am resigned that when he is 18, we will apply for Medicaid benefits and hope that he will find an appropriate housing placement soon after that. We’re not getting any younger and everyone needs to get used to that new reality. I also acknowledge that he likely won’t miss us, or won’t show that he misses us, except for many privileges he has at home that he won’t have in any residence.

— added by S on Thursday, October 25, 2018 at 6:58 pm

Sorry Win… I do have an issue with the statement “The moms are the ones who are devastated.” Really? That’s just a bit condescending to say the least. Also, just like all individuals kids/adults on the spectrum have different personalities and some are much more sensitive than others. To imply this is where they should all end up is astounding. Each case is different. My son would have been devastated being placed in a residential situation as a teen. I also have known and advocated for many kids who would have been shattered being placed in residential for a variety of reasons. Many of them are not such great places. Some are but many are not.. particularly adult group homes.

My son had severe behavior issues but as we all know the majority of behavior issues are communication so we worked and worked on finding an effective form of communication and it helped greatly. There was a blog (and still is) about a teen named Kreed from Colorado (Kreed’s World). He had extremely severe behavior issues and the mom went through many communication programs/apps until she found the right one for him. It helped his behaviors tremendously. Sadly he also had medical issues and passed away a couple of years ago but his mom still maintains her blog/facebook and I have learned so much from her regarding effective communication and to keep trying. She is also a BCBA and never placed Kreed in a residential facility even though he was so severe. Clearly each case is different and each family is different and there is no one answer. What works for one would not be great for someone else. It has nothing to do with the mother not being able to let go as you seem to imply.

— added by GG on Thursday, October 25, 2018 at 7:04 pm

Beautiful post. I’ve seen what Win (above) sees. The kids (children or adults) almost always adjust well. And they are happy to see their families when they visit. I remember really watching, helping to smooth the transition a bit, and a few of the kids seemed relieved. Not because their families weren’t important to them, because they were, but (and it was only my thoughts that came from observations, they couldn’t articulate it) maybe because the pressure was off, they weren’t the biggest focus in the home. They were really just part of the group. And sometimes there is a kind of safety, when we’re part of a group. We all think and feel differently, folks with ASD do too. Maybe we put our kinds of thoughts and feelings on these wonderful individuals because it’s what we know. They perceive most things differently. It’s not bad at all. It’s just different.

— added by michele on Friday, October 26, 2018 at 9:58 pm

I am not sure why you found Win’s statement condescending; I didn’t. And no one implied that this is where they should all end up! I’m also not sure why you mention all the people — including you — who did not put their kids into group homes. That actually feels a little judgemental to me.

— added by Susan Senator on Friday, October 26, 2018 at 10:26 pm

My son moved into his residential facility at 12 or 13, against my wishes and will. But, he seemed to adjust to living there better than I expected also. He came home on weekends but seemed ready on Sunday evenings to go back to “the place.” He is 21 now and it’s hard to remember a time when he lived at home, as my son with me being a full time mom to him. That’s the bitch with autism–it continues to take, even when the situation is for the “better.”

— added by Sharon Jones on Saturday, October 27, 2018 at 5:31 pm

Oh Susan, so heartfelt and beautiful. I will refer to this in the upcoming years as we attempt to figure out what living arrangements will be best for Justin and for his parents. Thank you for your insightful words!

— added by kim mccafferty on Monday, October 29, 2018 at 11:34 am

Thank you, Kim!

— added by Susan Senator on Monday, October 29, 2018 at 2:39 pm

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