Susan's Blog

Monday, July 9, 2012

Don’t be a hater

I’m feeling sad about Nat again, maybe it’s because I was trolled by a commenter in my latest Swami post. Not trolled, exactly, but judged. This person made a jab about moms who “ship their kid off to neglectful institutions so that they can have their freedom.”

I don’t know for certain if she meant me, because it is not true about me, but the point is, why the hate? Here I was, trying to express my joy with how Nat has blossomed in adulthood. In looking back, I see that for the most part, his growth has made it possible for him to understand the world better, and in turn to feel more comfortable in it. His inner comfort has led to a calmness that allows him more learning. And so, the more he learns, the more he understands, the better he feels, and so on.

I wanted my readers to know that this has been my observation, and that in fact many of my older autistic friends tell me this with regard to their own lives, and my older mom friends with grown-up autistic kids have found the same thing, regardless of functioning level. And we, in turn, have found a certain measure of equanimity and peace as we age along with our mellowed-out sons.

My happiness later in life springs from many things, Nat’s growth being one of them. My growth is another factor. Getting older has given me a little bit of perspective about life, as it does with most of us. The trade-off of losing your fresh youth is that you acquire a soothing knowledge.

I am also happier because my children are turning out nicely. And so has my career. But, yes, some of my happiness comes from having more free time than I used to, because all three of my sons are older and more independent. To my greatest delight and surprise, Nat became more independent when he left home to live in his school residence at 17. He did not “act out” once. There were some nights in the beginning where he asked to sleep at our house, and so we had him home a lot, and I came to visit him all the time during those days. I agonized over that decision for a year, not knowing what he would make of it. Would he think I was “shipping him off?” Or “discarding him like a used bellydance costume,” as another hater once posited.

I’m agonizing a bit now, too, because of that comment, as stupid as that may be. Don’t all of us worry about the thin shades of truth in any sweeping generalization? I am freer now because Nat’s not here. I did pick out a place for him to live, the structure and make-up of which was somewhat dictated by the state bureaucracy. Does that make me a callous mom? Does that make his house an “institution?” Does the fact that Nat does not live with me mean that he is living in “neglect?”

No. I know that was all sent to me in confusion and anger and the impulsiveness we all find when we hide behind our computers. So easy to wound with the Send button, to draw blood with a faceless email. I’ve done it, too.

I guess what I’m saying now is, life is hard enough. Why go out of your way to hurt people? If my truth doesn’t match yours, you can shrug and move on. Hate just doesn’t help. And I think we are here to love, because we need to perpetuate our species, and we do that by being happy and helping others be happy, too.



Just, Bravo! You said it beautifully and well.

— added by Raquel Schnitzer on Monday, July 9, 2012 at 2:58 pm

I am so glad you are in my life.

— added by Autismville on Monday, July 9, 2012 at 3:25 pm

Wow, I have written about the very same topic today. There must be a rash of negative little trolls running around.

I often joking say to friends that my goal is to “raise a functional adult that doesn’t live with me anymore.” Partly, that is true. I want my son to be grown, independent, and happy. And of course I also want the time to come where I have more independence as well. It’s normal. I think your choice of schools is nothing like an institution. It’s simply a well-thought-out transition.

I suppose there’s no way of getting away from other people judging us, but the important thing is we keep hold of our humor and remember it’s about what works for OUR family, no someone else’s.

— added by Flannery on Monday, July 9, 2012 at 3:26 pm

Wait, you made a decision that was right for you, your son and your family and someone is telling you that you are wrong? How can that be? If Nat weren’t, well, Autistic, what is the likelihood he would be living at home right now? SLIM TO NONE.

There’s something about computers that takes compassion out of people. They think because they are reading words that the words don’t have meaning, don’t have feelings, don’t have emotions. Those words on that electronic screen have people on the other side of them.

I’m willing to bet that person is in some pain. How else could they be so callous and hurtful?

— added by The Domestic Goddess on Monday, July 9, 2012 at 3:37 pm

Having had similar incidents on line and especially on twitter I can sympathize with you alot. But the reality is that you did what Nat needed and what was best for him at every stage.Only those parents who have no choice but to send their children to residential facilities or to adult placement can understand what you went through in order to allow Nat HIS independence as an adult. This makes you a terrific parent.

So what if you had to deal with state bureaucracy or state support. So what if there are state social workers involved or state involvement at all. As long as everyone knows what they are doing then it is being done well. As my youngest just mentioned to me about national health care..if you are worried about inadequate support (drs, nurses, social workers) just train everybody better….

Just out of curiosity what do the parents of full grown completely neurotypical kids feel when they finally leave the nest? Don’t you think they feel independence and that they are glad to have more time for themselves? If there is no issue or shame in that, why should there even be one iota of this guilt trip for you about Nat? You didn’t dump him on the side of the road. You set him up in a beautiful facility with good care and friends his own age.

I can’t help you over the hump in dealing with this meanie but what I can tell you is that blogging definitely helps and at least on twitter you can tell them off and then block their tuchas. That always works for me. 🙂

— added by Elise Ronan (@RaisingASDKids) on Monday, July 9, 2012 at 3:39 pm

Why do so many fail to understand how much harder it can be for a developmentally disabled adult to make the transition into living away from their families when it doesn’t occur until their families are gone? Our children are intricate and complicated to care for. They are vulnerable to intentional neglect and mistreatment. They are also vulnerable to caregivers who simply do not know enough about them to meet their needs appropriately. That is why it is so important for an adult with a developmental disability to move away from home while his or her parents are still young enough to visit frequently and teach their adult child’s new caregivers about their child. Also,developmentally disabled adults are not merely “adjuncts” of their families. Their need to live with individuals of similar ages, interests and abilities rather than with mom and dad is as varied as those needs in non-disabled adults. That alone is one very important reason why “one size does not fit all” when it comes to helping our children severe intellectual impairments find their way into safe and happy adulthoods.

— added by Audrey Rasmusson on Monday, July 9, 2012 at 5:27 pm

The household you have lovingly helped to create it is not an institution, it is a home. The 22-year-old who is living in that lovingly created home, is an adult, who deserves to have the respect, privacy and independence that any young man would want. And his mother? She deserves — like any mother who has successfully launched her young adult into the world — a little time.

— added by Fran Basche on Monday, July 9, 2012 at 11:02 pm

As hard as it can be, take your own advice.
You looked at your child and did your best.
Let yourself believe that you did all you could, with only the best for Nat in your mind. And guess what. When you’re more relaxed, and happy, this is radiated, and Nat get’s to enjoy a healthier relationship with you as well.
I can’t think of many situations where there aren’t mulitple scenario’s. You picked the best for your family.

— added by Jacquie on Tuesday, July 10, 2012 at 9:43 am

Man, that kind of crap just grinds my gears. Don’t forget that you are my hero, Susan. It takes guts and determination and a whole lot of policing to feel safe about finding the suitable placement for someone you love. Just because I love my mom to pieces, doesn’t make me a gerontologist. Nat has a more established social life than I do, and he is a more well-rounded individual because you and Ned had the stones to see that your son would be helped by a residential setting. I think keeping your child at home until you and/or spouse predecease him/her is cruel. How are they supposed to cope when the only safety net they’ve known their whole life is gone or no longer able to remain in the home? I’ve seen this, and the ensuing lonliness is heartbreaking to watch, even from the other side of the country. Buck up Susan, I’m right behind you, and I don’t just think, I KNOW that NAT is blosssoming because of the tough choices you and Ned made for your beautiful son. Rock on, Lisa

— added by Lisa on Tuesday, July 10, 2012 at 5:41 pm

I completely agree with Fran. Anyone who’s been reading this blog for any length of time would never say you “shipped” Nat off to an “institution” – so many loving and sometimes difficult decisions went into his move. Good families give children both roots and wings ~

— added by Suzette on Tuesday, July 10, 2012 at 5:51 pm

Beautifully said, Suzette…I fully agree!

— added by Candy on Tuesday, July 10, 2012 at 7:33 pm

The topic of what setting is best for a family member with a significant disability of any kind including Autism, to live and grow best in, is a very, very emotional one. I don’t believe any family comes to a decision on what is best for them without much soul searching. This hard decision will most likely be made at least multiple times in a lifetime. It takes courage and hard work to maintain a healthy and challenging home program for a person with a disability. In my experience, it also takes an equal amount of courage to let go and monitor from a close distance, a healthy and challenging program in a group home. I am saddened at the comment made about shipping off a person with a disability to an institution. It shows so little insight. Ultimately we do not live in a perfect world, there is no “perfect situation for our kids”. Home is not “perfect” and neither is a group home setting. We must all do what in our heart we feel is right and with the best of our knowledge, what we believe makes our young adults happiest. That is all that can be asked of us.

— added by Row on Tuesday, July 10, 2012 at 9:01 pm

My dream is to create the kind of life for my daughter that you have created for Nat.

— added by Susan on Wednesday, July 11, 2012 at 8:50 am

I have often said that when I go to live in a senior living center, I’d better find one that will take Charlie. That’s said out of fear, not jest. I need to know, especially as a 47 year old mom,that Charlie is taken care of when I am unable to be there

So, I strive to get him as social, verbal and literate as I can, and I pray that when he’s ready, there is a living environment nearby that will help him become independent of us, and learn to be a part of the community.

— added by Janet bowser on Wednesday, July 11, 2012 at 2:20 pm

Honestly, there are plenty of parents of neuro-typical children/adults that could take a lesson from autism parents. Just sayin.

— added by eileen on Wednesday, July 11, 2012 at 3:00 pm