Susan's Blog

Friday, November 4, 2011

What a mess

The other two families bailed on us. They felt they needed to move more slowly than we are able to. We need Nat to have a structured place to live and I just don’t see us being able to set that up so well here.

I feel like I need to escape the very skin on my bones. I am so uncomfortable with this situation. I love my boy and I want him to be happy and stable. I have to regroup, think what to do. There’s Shared Living, which is when someone has their own apartment, with a caregiver. That might work but as Ned says, “It feels little.” It feels lonely. But would he be lonely? He would still have his Day Program and his social group and friends. It’s just mealtime mostly that he’d be just with the caregiver. And we are interviewing one this weekend; he might be fabulous.

But I am just a jumble of nerves, not knowing what’s next. My go-to guy, my guru, the one who has helped me so much with all this education and planning, is not around this week. I don’t really know how to get through this time. I’ve lost weight from the stress and upset stomach and too-much-biking to escape it all.

I’m glad for the weekend.


So sorry to hear of these obstacles. Do yourself a favor and rent a movie to escape and eat something fattening. There’s always tomorrow to deal with it. Take care of yourself for now.

— added by Steph T on Friday, November 4, 2011 at 7:01 pm

Hey Susan
I am sure so many of us out here are thinking of you. The “roller coaster of the unexpected” always seems to creep back into our lives. But strangers are out here supporting your in our hearts.

We all hate this scary roller coaster which sometimes breeds panic. But it will pass, as you know, as new solutions start to unfold. You will meet the potential caregiver. Your advisor will come back in a week. It will be one more hurdle but ultimately it will yield a “different” right choice. New normal…remember… and now a new right choice will reveal itself.

— added by RB on Friday, November 4, 2011 at 11:27 pm

I have a six year old and have read your books and your blog and you have helped me a great deal, but I confess – I do not know your spiritual beliefs. Still – I know mine and I will pray for you. There are times when that is all that can be done because we cannot do more. As the other comment said, there is always tomorrow and there will be an answer. I will ask for strength and peace of mind and comfort and help and support. It will be there somehow.

— added by Candace on Friday, November 4, 2011 at 11:53 pm

Q? is he actually going to be bored or will he enjoy some quiet time after the stress of being out and about all day.

Here, they have a program where you can “foster” your adult children through Comm. Living. There is one man in the village to the north and his care is that way. He is in his mid-late 40’s and the couple would be mid 50’s. His Mother is in town in a senior’s home and can no longer care for him. He’s been with them about 5yrs or so now.

Could be another solution.

Even though it’s been 20yrs ago now I remember the hassle of dealing with roommates etc in University. I’d never go back to such an arrangement. A group home, agency run, is different. A group of families trying to form their own group home… someone get’s all the work dumped on them, people bail, and something always goes wrong.

I’d look out for Nat and Nat only.

— added by farmwifetwo on Saturday, November 5, 2011 at 10:55 am

I’m so sorry Susan. How frustrating. One thing I have learned from your blog is that just because something is “not now” doesn’t mean it’s going to be “not ever”. Virtual hugs to you today!!

— added by Suzette on Saturday, November 5, 2011 at 11:43 am

Ugh, so sorry to hear about the other two families, and you’ve worked so hard to put this all together. I hate limbo too. I hope all this is rectified soon!

— added by kim mccafferty on Monday, November 7, 2011 at 10:59 am

I hope the weekend brought you some relief and clarity. It is so hard to know if he would be lonely or if the Shared Living arrangement would suit. I’m very sorry the other families backed out.

— added by Kathleen on Tuesday, November 8, 2011 at 9:39 am

I personally would prefer Shared Living, but I spent too many years with too many roommates. I don’t know if it would be lonely for Nat, though. Hope things settle down and the best path gets clearer.

— added by Alice on Tuesday, November 8, 2011 at 5:27 pm

I feel for you Susan, I can’t even manage a joke about the stress-induced weight loss. This will work itself out, maybe not in the time frame, or in the way you planned it. I’m sorry that you and Ned worked so hard only to be let down. After Hurricane Katrina (or any other shitty situation) my brother said “it’s not how far you fall, it’s how high you bounce”. You are a super-ball, woman! You’ve got tons of bounce, and I know this hurts, but you and your whole family will prevail. Lisa

— added by lisa on Tuesday, November 8, 2011 at 5:55 pm

Hi Susan,

I get what you are saying about ‘escaping the very skin on my bones’–I think you described what I couldn’t quite The can’t-deal-with-it-can’t-stay-here-just-too-much, feeling that I have come to recognize in the last few years.

My ‘Nat’ is small still, seemingly a million years from ‘After 21’ life. But, I know it will get here quicker than I can imagine…

Thinking about you and your family and hoping and praying for the best.

— added by Christene on Wednesday, November 9, 2011 at 4:54 am

Susan, I am so sorry to hear this news. You have spent an incredible amount of time and effort on this. Frustration does not begin to describe how you must be feeling. Darn it! We got some bad news on my guy, also. Due to funding cuts he is being kicked out of the group home for autistic boys where he has been living for the past nine months. Just like that, I get a phone call saying money has dried up, come pick him up, blah, blah. He is already on Medicaid (no easy thing to do) but now has to go on some bullshit “list.” But I say, “this will be an incredible adjustment for him, not the mention the rest of the family.” I could have saved my breath. We will all do the best we can.

Hang in there with your situation. Let’s hope things turn around or that something comes up in the near future.

— added by Sharon Jones on Thursday, November 10, 2011 at 2:17 pm

Hi Susan
I have followed u long enough to think that your blog has changed. before ther was a little of some very acceptable uncertainty, and a little of Susan being allowed to look for answers and ask for them if required. I seems now, because you offer guidance to so many others, there is less room for “you” to continue on a spiritual path of self discovery.

— added by Grant on Friday, November 11, 2011 at 4:58 pm

Grant, I don’t really know what you mean. I still have self doubt and question things, but I am also stronger than I used to be, at the same time. If my blog has changed, I feel that it has changed for the better, as have I. And by the way, did you even read the post that you commented on?

— added by Susan Senator on Sunday, November 13, 2011 at 8:12 pm

Of course you are devastated by this! Who wouldn’t be? It is hard to look on the bright side of things all the time when you work like a dog just to give your grown son a sense of independence, dignity, social outlets, stability and purpose and it gets ripped out from under you. You have a right to feel angry. Just like our kids, nothing comes easy for the parents of kids with Autism. We have to be on top of every detail and live in a sort of hyper vigilant state just to provide the structure our kids need. At times (like when despite or valiant efforts things don’t work out), it feels defeating. I’m not going to give you a pep talk because like every other time you have been knocked down, you will know when you are ready and able to put the gloves back on and head back into the fight.
I’m really sorry about what you are going through!

— added by Christine Blum on Sunday, November 13, 2011 at 8:39 pm

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