Susan's Blog

Sunday, April 10, 2011

The Gently Painful Transition

Sometimes I look at my boys and I think, “Those are my eggs.”  I am full of wonder at what they once were, and how they evolved into who they are now.  But what happened with the oldest one?

A few weeks ago, we had Nat’s ITP, which is his Individualized Transition Planning meeting.  Among other things, we were told by our Department of Developmental Services liaison that we should be seriously transitioning Nat away from Home weekends.  Our liaison told us, very sensibly, that we need to do this in order to make the case that Nat needs residential support and cannot live at home after graduation.

Nat can’t live with us.  I can say that now, 21 years after Nat’s birth.  When Nat first hatched, my fluffy yellow chick, he was so raw and vulnerable.  I could not feel happy because I was so afraid for him.  I did not believe I could leave him with anyone, not even Ned.  I actually thought he might die if I did (when he was a week old, my first outing).  Maybe all people feel that way with their firstborn, though.

Nat can be without me now, for weeks at a time.  And that’s how it has to be.  Nat can’t live at home.  But this is not about how age appropriate it is for a young man to live away from his parents.  If he lives at home, he regresses.  He becomes a walking nerve ending, taut gangly ganglia.  He goes through activities in a rote, rushed way.  I don’t know if he enjoys anything when he’s home, other than his social group.

Which is age appropriate.  I guess.  But sometimes I have to admit I feel like I’m stretching things.  I worry that I’m making stuff up.  How do I really know for sure?

But I always maintain that knowing Nat is part leap of faith, part optimism, part mystery, and part nuts and bolts fact.  Today I am thinking of the mystery.  I’m not all that optimistic because I’m sad that he’s not with me today.  I’m in a coffee shop alone.  I have all the time in the world.  No one is gulping down a huge brownie and standing up, ready to lope back home.

I have mixed feelings about those kinds of soothing arguments people make when I am heartbroken about one particular passage or another.  When Nat first moved out, a lot of people rushed to say, “Well, he’s almost 18.  He would be going to college at this point…”

Yeah, don’t finish that sentence, thanks.  I am not that together that I can just go with that, strong and smiling.  The fact is, Nat is not going to college, it is not the same thing.  Nat is going to be living in an apartment with other guys, like Max, but the guys won’t be like Max.  And Nat will have 24 hour oversight by another adult, someone who would know to call 911 at appropriate times and not open the door to random people.

I sound crabby and I suppose I am.  I missed Nat so much this weekend.  But this was also one of the best weekends I’ve had in a long time.  I went to a party that was just perfect:  enough people I knew, some I’ve known forever, and also others I sort of knew, and still more I wanted to know.  I was dressed right.  There was dinner, dancing, heavily-frosted birthday cake.  My handsome husband even danced with me.  The only anxiety I had was whether Nat was having an okay time in the Residence.  Was he sad without us?

Will I always have this gentle pressure in my throat, my chest, Nat’s presence inside me?  A kind of peripheral pain – not even an ache, but a sigh.  I think so.  He is my son, but he is the son who will always need my help in order to survive.  My other two sons already know how to keep themselves alive and even thriving – and one of them is only 13.  Nat knows how to do many things, but he still doesn’t know to do them.

I feel like if I go on like this I run the danger of people feeling sorry for me.  Or people telling me to stop feeling sorry for myself.  But it is not myself I’m sorry for.  It’s my darling, my not quite fully-cooked egg.


I don’t think that will ever go away…the “gentle pressure” as you describe it, but most importantly for now, it sounds like you had a much needed fabulous weekend, including a dance with your hubby (= priceless) and Nat probably had a great weekend too. As I said, I don’t think it will go away, but I do think it will get easier:)

— added by Eileen from Florida on Sunday, April 10, 2011 at 5:38 pm

How often will you see him? What’s their recommendation – once a week, once a month??

My daughter is 14 and I wake up a thousand times a night wondering what is going to happen to her when she is an adult. I so appreciate you sharing your journey, it makes it slightly easier.

— added by Susan on Sunday, April 10, 2011 at 8:14 pm

Think of it this way… how long would you last before you wished you were home if you went and stayed at your parents house?? Mine live 2hrs away. I manage about 24hrs… 48 and I’m running out the door for home. A couple of years ago I got hurt and Mom was here for 12 days. She kept leaving and going to town to have a coffee just so we wouldn’t drive each other batty.

IMO it’s not an “autism” thing, it’s part of life. We prefer our own space, our own things, our own routines. Nat has found his own place and done a great job transitioning to it. Instead of bringing him home those weekends why not make plans a few days before to take him out for a 30min activity… walking, bike ride, Starbucks etc.

— added by farmwifetwo on Monday, April 11, 2011 at 9:35 am

Susan, I mean no disrespect here, but you are beating yourself up (again) for what I consider to be perfectly rational and justifiable worries and concerns. The simple fact is we both have a son with autism and that DOES make a difference. A huge difference, in my opinion. It will for the rest of our lives. And, it doesn’t matter whether Nat is 2 or 22, whether he would have “left home anyway” what does that mean exactly? That’s the same BS I was told when Matthew was moved into his group home. For me, even though my son is considered “high functioning” he simply cannot fend for himself out in the world by himself. That won’t change. Since there is no easy answer as to what is appropriate for you and for Nat, I say follow your gut on this one. If you believe it’s best to have him home on weekends, then do it. If things change and you feel confident that he can be away on weekends doing whatever, then you can “wean” yourself from having him at home during those times, but the point I’m making here is you call it based upon what is appropriate for Nat and to hell with everyone else who believes otherwise. They are not his mother. You are. That may be considered overprotective to some, but it’s the way I see it.

Yes, you will still worry and be concerned and thinking about him when he’s not at home on those weekends, that’s just being a mom, but you will probably be doing that in regards to your other children, also.

— added by Sharon Jones on Monday, April 11, 2011 at 12:13 pm

There’s just so much yin and yang with this disorder, but I try always to focus on this- what’s best for my sons. You have done that so beautifully. It’s your time now, even though that “gentle pull” will probably always be there with you. I have it on good authority it’s that way, in some respect, for all those NT parents too…

— added by kim mccafferty on Monday, April 11, 2011 at 3:18 pm

I have no idea who said it, but there is a quote to the effect of “a mother is only as happy as her unhappiest child,” which I think applies to parenting any child with a disability– I know for myself, it’s impossible to ever really completely give in to happiness, even though I have many happy times, sort of like when you’re trying to sleep but you can’t fully, because you’re also always listening for little ones needing you during the night.

Parenting a typically developing kid is not the same, because as typical kids get older they really do outgrow the need for caretaking in the same sense that they required as children, and they go on to assume their own roles as caretakers to their own families. When our kids don’t outgrow the need for caretaking, our job is never really done, it just gets passed to someone else. For me, a huge part of parenting my kids on the spectrum (and all that has kept me going during really rough times) is knowing that if I don’t have the strength and faith to keep pushing onward, who will? It’s hard to let go of that. I doubt I ever will. So that tugging sensation will always be there, I think, like a phantom limb. It’s not the way I would choose, but since the choice is out of my hands I will borrow another wise quote to make peace with it, “It’s a different and that’s okay” (thanks, Nat!). And thank you for sharing, Susan 🙂

— added by Anjanette on Monday, April 11, 2011 at 7:42 pm

And thank you, Anjanette, for reminding me of that darling, wise quote.

— added by Susan Senator on Monday, April 11, 2011 at 7:44 pm

S – It bothers me that your liaison is advocating an approach that may or may not be in Nat’s best interest in order to make it easier to satisfy (his/her) opinion about what it takes to qualify for services.
My family and I go to a weekend cottage year round. Many of my twenty something colleagues split from their tiny grungy apartments in the city and crash with Mom and Dad and do the laundry on weekends. Is that wrong? Most young kids just out of college have no choice other than to move back home to save money to eventually move out. Who is this or any bureaucrat to say that the schedule that you want is not acceptable in order to access funding (and who the heck is watching anyway?) My 2cents. -D

— added by Dadvocate on Monday, April 11, 2011 at 8:50 pm

Thanks. There is a lot for me to think about.

— added by Susan Senator on Monday, April 11, 2011 at 8:57 pm

wow…looking at it that way…that IS alot to think about. Great point.

— added by Eileen from Florida on Tuesday, April 12, 2011 at 3:19 pm

You can always compromise and have Nat home on some weekends, but not others. I remember when I worked with the kids (20 years direct care, at a residential program) that the ones who seemed to do the best, were the kids who went home every other or every third weekend. Any more than that would inevitably cause the “waiting” anxiety. The children would spend a lot of the week thinking about going home or asking about it. When they stayed for some weekends, they had a chance to really settle in and be “part of the group” and all of the group activities. Most parents found that they could enjoy their children much more when the visits were less frequent. They had time to regroup, have lives of their own, and re-energize for the next visit. Everyone needs a break, form work, kids, whatever!
Good luck:)

— added by michele on Tuesday, April 12, 2011 at 7:29 pm

Susan, I feel your sadness and I’m sad for you. None of this is the same as what other people are going through. You have your own unique pain. We can never fully understand. I can’t understand people trying to convince you otherwise.

— added by Brenda (mamabegood) on Saturday, April 16, 2011 at 8:24 am

As Charlie is just turning eleven, I brought this subject up with my husband. The reality of the situation for us is that we won’t live forever and I cannot choose which of my children “should” be designated as Charlie’s caretaker. Forever.

We need to move toward attaining as much independence as possible in everything with Charlie, carefully and determinately. Otherwise we take the risk of raising a child who will never leave the house, leave the town, leave his bedroom, because we will be afraid to let him go.

One of the main reasons that I want to move from this little town that we are in is because we can’t even find a babysitter for overnights, let alone an environment which would help him attain some independence.

One thing I remember is when you wrote about the trip out west. Nat went to a camp and you guys went out west and you were a wreck about it, but all had a good time. We dragged Charlie to museums this past week and it made all of us miserable. He followed because we made him follow, but all he wanted to do was play and it’s hard to play at the museum.

I want to go to the Smithsonian, but I am convinced that Charlie has to either attend a camp or stay with a sitter. It would be torturous for all of us.

I feel so guilty for writing that. But it’s true.

— added by Jan Bowser on Saturday, April 23, 2011 at 6:02 pm

Jan – Do you have SSI for Charlie? I don’t know what age it starts but you should find out. If you have the money for a camp, you should look into Extreme Sports Camp in Aspen, where Nat goes. It is fantastic. They take kids up and down the Spectrum and each has a one-to-one.

I think museums are a stretch for most kids, to be honest… Maybe try things that would be more fun for Charlie, like a zoo? I hope you find a sitter, though.

— added by Susan Senator on Saturday, April 23, 2011 at 6:26 pm