Susan's Blog

Saturday, April 7, 2012

Autism Adulthood: Lessons

The work and learning continues for all of you.

And if  your adult child has moved into a new living situation, here are some things to think about.

Lesson 1: Remember what is important

You have to keep your eye on the prize: your child’s wellbeing. How do you do that?

1) Concern yourself primarily with what your child did, is doing, or will do. Look at him. Talk to him. Hug him if you can. Be affectionate but also be respectful. Do your parent job by observing keenly, taking in any changes (positive or negative) and consciously noting them. Is he more active? Wide-eyed? Stimmy? Talkative? What is he talking about? What words and sounds are you hearing? Are they okay?

You have to look deep inside, to your wisest part: your instinct, and find the truth there, asking: Is he doing well?

2) In terms of your dealing with all the other people involved: keep your head above any squabbles — whether among the other families, the service providers, the staff — anything not directly about your child.Remember that in any workplace or group, there will be gossip, guessing, rumor, innuendo. Try not to engage. To discern the truth, if you really have to, ask the person who can most directly have knowledge of this bit of talk or who can most directly have an impact on it.

3) Frame complaints as questions, not accusations. Do this by assuming the best of each person; that will effect your outlook and your tone.

4) If you’re emailing staff or other parents, CC only one other person, just to keep it professional. Don’t CC the whole chain of command: that can appear threatening.

5) Always call before coming over. This is a home, and it is not yours.

6) Be friendly and interested in anything the staff or other families want to tell you. Always listen, to be certain that anything relating to your kid is going okay. But don’t listen too carefully to details that might be just unsettling gossip. Safety and wellbeing of your child: that’s what you need to know about.

7) Don’t be ready to jump ship as soon as anything unexpected or unpleasant happens. Remind yourself that this is a home, not a laboratory. Not a classroom. Things cannot be perfect, or even the way you dreamed. Things can only be real life and you have to decide what you will and will not accept. Decide on your non-negotiables and let the rest ride. You can always wait a day and deal with something non-dangerous at another point in time. Check in with your child in whatever way you can to assess the reality.

For me, the bottom line is Nat’s safety and happiness/contentment. He might be more anxious than we’d like, but it is a new, stressful situation. That’s the reality. His staff are good people, well-trained, and caring. That’s another fact. His parents are highly involved, loving, but very intense. That’s true, and it’s okay.

Nat will live through his current anxiety. Like all of us, it is good for our children to experience living through difficulty and struggle. In a group home situation, the more we can step back and see each person’s reality and keep focused on what’s important — the child’s wellbeing — then we can let go of the little things and breathe easy.



Good advice… not only for the group home specifically, but life in general…

— added by Tim on Saturday, April 7, 2012 at 11:22 pm

That is great advice for everyone involved in the lives of “our” guys. When you look at all the transitions that your son has gone through in a short time, of course he has some anxiety, I’d almost worry if there was none. We’ve found that it takes about 90 days, when a new individual comes to our program (either residential or day, or both), for them to really settle. Behaviors come and go, we figure out what people like and what “make them tick” and they begin to understand the routine and rules and feel safe within them. Nat seeing his family interacting with his staff and housemates comfortably will do wonders. M

— added by michele on Sunday, April 8, 2012 at 8:49 am

What keeps me up at night is wondering who is going to be doing this for them when I’m not here?

— added by Susan on Monday, April 9, 2012 at 6:52 am

Thank you Susan for writing about this. I think all of us raising kids on the severe end of the spectrum spend the most time worrying about what the future will hold for our kids once they are grown. I know I do.

— added by Sunday Stilwell on Monday, April 9, 2012 at 7:22 am

Thanks, Sunday; sometimes it’s hard to know if I’m in the right ballpark or not!

— added by Susan Senator on Monday, April 9, 2012 at 7:36 am

Excellent post. When parents are availible for the transition it helps everything go so much more smoothly. It always saddens me when parents wait until they are older and are having an end of life transition themselves. I understand they are trying to protect their children for as long as they can, but being apart of any transition is always better. Parents who are active and involved are wonderful.

— added by R on Monday, April 9, 2012 at 8:40 am

I am reading Nat’s and your story avidly. Thank you for sharing.

— added by Dixie on Monday, April 9, 2012 at 12:58 pm

I would love the “magic answer” to how you got so wise so that I can become as wise 🙂

— added by Stephanie on Monday, April 9, 2012 at 12:58 pm

This is so helpful, Susan. I will copy this into a document I made about moving out, to keep for future reference. You open up the view ahead for so many of us, and help us to see things we can only imagine (and worry about). You also burnish out the bumps, so our paths will be smoother when the time comes…bless you for that!

— added by Candy on Monday, April 9, 2012 at 9:07 pm

I also have an extra-ordinary adult living in a residence. I strongly disagree with you about calling ahead. Yes, it is a home, but vulnerable populations are just that: vulnerable. Staff, no matter how good, are not always “on deck” – there is high turn-over: they quit, or transfer, or get sick… Finally, one last piece of advice: follow your gut. If you think something is wrong, say something.

— added by Victoria Gillen on Tuesday, April 10, 2012 at 1:16 pm

A good point, but if things are at a point where you feel you have to surprise the staff rather than call ahead, then there probably is trouble already. That being said, I have been known to surprise staff before Nat has moved in somewhere, to see how they are with others. You’re right; trust your gut, speak up. But there has to be a balance of respect — for your child’s life and independence, and for the staff’s professionalism –doesn’t there?

— added by Susan Senator on Tuesday, April 10, 2012 at 2:17 pm


As you are clearing a path for many and have a point about the balance of respect, do not underestimate how your skills, demeanor and inner resources play a role in setting a tone in what others give your son, what you have found and established for him. I guess what I am trying to say is to all of us out there, those of us with yet growing skills and resources (which is really all of us and it is one ever going continuum) not to give up your efforts, to take all of this in and live it all in balance. I am finding as a yet growing person, and in all due respect to myself, a bit behind where it is you are Susan, I am seeing how the parents matter and, at the same time, it is something that ought to matter to all those vulnerable, yet involved and enlightened parents are an essential and very valuable ingredient. I like to believe we not only learn from one another, but that we even benefit from the good efforts that are unknown to any of us.

— added by Stephanie on Wednesday, April 11, 2012 at 10:25 am

Sorry this is a late follow-up – respect is very important, agreed. But, again: staff retention rates are such that respect should not be confused with blind trust. I respect, and trust, the Agency responsible for my son. They immediately deal with the very, very rare staffing problems. However, even one incident would be unacceptable. The fact that I don’t feel compelled to call doesn’t make these “surprise” inspections – it’s dropping things off, or picking my son up for trips to the gym or church or whatever (calendarized events, btw) – in addition, all parents/guardians are on the same page, and look out for any problems that may impact any, or all, the guys.

— added by Victoria Gillen on Thursday, February 28, 2013 at 3:13 pm