Susan's Blog

Monday, November 14, 2011

It begins

Today didn’t go so well. Or maybe it did, depending on your perspective. My perspective right now is dark mud, so there you go. I am remembering my feelings of being under siege with Nat in my house, and I feel a wisp of that stinging me today. Not only that, there is also a profound sorrow that is pulling me down, despite telling myself to stop it already; despite knowing that we are the lucky ones.

My sorrow is the oldest kind, that of a mother whose child is disabled and limited. As I write this, my sorrow deepens and I even feel a little pinprick of fear/shame because I know that I am betraying people:  Nat, because I just said that bad thing; those who look to me for guidance, who thank me for forging a path where there is none, who learn from me. I’m betraying all of you because I feel these terrible things. I find myself wishing he didn’t live at home still. I find myself wishing he wasn’t autistic. I find myself terrified of his future, that here we are, here it is, and that in itself is scary.

As he walked into the DayHab today for his first day, I could feel his anxiety, his excitement, perhaps, his being at loose ends. He didn’t know what to do, where to sit. We were early, so they were not quite ready for him. He stood there, gangly in his down coat, like a big bumpy blue lollipop — it was already too warm for that — and carrying his school backpack that only had lunch in it. A lunch he’d made. I feel so proud of that and yet so sad, too, about every little thing…making lunch while supervised by his mom, at 22; not having the right coat on; feeling awkward and new and not knowing how to say that. Someone called his name:  “Nathaniel,” and he shouted, “Nathaniel!” As ready as a soldier, and perhaps just as nervous.

Or is that me?

Walking back to my car, feeling those stupid tears, wanting to talk to someone, opting first to talk to myself.  Is it okay? Seemed a little loose and unstructured… Better call Ned. Ned doesn’t pick up. Call my other friend/my guru, get his perspective. I felt better when we switched over to some State House gossip, the stuff that lights our fires.

Did a little food shopping and I carried an almost painful lump from my throat down to my upper belly. Caught sight of myself in the closed-circuit TVs in the aisles and saw a black and white me, bony-faced and serious.  I wanted a Starbux, but I had ice cream in the car so I went home. Way too hot even for my little jacket. And there’s no way that Nat will leave his coat behind when he goes out to the worksite. Zipped all the way up, too. Will someone notice and suggest he leave it? Probably not. This is the real world now, people can’t expect to give too much of a shit, even good people.

If I sit for a moment — which I hate — and identify the source of the pain, like a stupid masochist, I find that it is, of course, the same old tired, boring wound: that I don’t know what this new situation is like for Nat and I fear that he is unhappy. Also: that I can fix nothing, that he really is disabled. And that this is forever for him.

Ned picks up this time, “No, it is not forever,” he says.

“You don’t feel sad?” I ask him.

“No, I think he was happy there when he visited with his teachers last week. I think he’ll adjust.”

Why am I always the head case, and he’s the brave and reassuring one? This is the old pattern from the earliest diagnosis days. I feel alone even though Ned is so much with me, on my side. I find myself thinking, Am I going to have to go through another 6-month period of grieving, just like when he was three, just like when he moved out at 17? I don’t want to go through that. I don’t want to keep feeling this way. But it is back, and I have to go through it.


So you go through it hon, and you emerge on the other side. You have done the best by Nat, in every way possible, with what is out there. Let it be what it is and let it be OK. Nat is Nat. And it is OK, in so many ways. You are brave yourself, and wonderful. And so is Nat.

— added by Penny on Monday, November 14, 2011 at 8:22 pm

Your willingness to be REAL and SHARE with us (me) is very much a gift to me.
and maybe to you too. (?)


Thank you. For sharing your heart. I wish ease for you & for Nat.

— added by Laura on Monday, November 14, 2011 at 9:07 pm

Your honesty helps me. I have had many days like this lately. Not every day or week or month is wrapped up in a shiny little life-lesson bow. We just move through the dark days the best we can. I hope you feel better soon.

— added by Autismville on Monday, November 14, 2011 at 9:07 pm

I agree with Laura and Autismville, your honesty about your feelings is something I really appreciate about this blog. You are still forging a path and providing guidance. Thank you for continuing to share your story.

— added by Suzette on Monday, November 14, 2011 at 11:02 pm

I think our kids adjust a lot better than we think they do. As long as they are able to get their needs met, that seems to be the most important thing to them. If people are nice to them, and they like their environment they’re happy. Sounds like most of us, right? I really think Nat will adjust fine…I’m with Ned on this one. However, if you need to go through crappy feelings then do it…if you don’t get them out you’ll feel worse. I really think things are going to improve. By the way, everyone thinks the world of you, and all your efforts…that means Nat too!

— added by Candy on Monday, November 14, 2011 at 11:50 pm

All we can do is deal with what’s really there. I don’t think you should worry about being a role model. By living your actual life and facing your actual challenges and admitting them you are being an encourager.

And starting day-hab is like starting school again. It will come with bumps and challenges and the need to blow off steam afterwards.


— added by Dixie on Tuesday, November 15, 2011 at 5:39 am

Susan, thank you for this post. I am having a grey day myself. My son will be turning 13 next month, and I am feeling overwhelmed by thoughts of the future. I know not to take more than one day at a time, but sometimes that’s very hard to do.

I appreciate your honesty. It helped me so much on a day when I’m feeling sad.

— added by Carolyn on Tuesday, November 15, 2011 at 7:29 am

Was he able to attend for a week or so beforehand along with his previous therapists and run through what will be expected of him now? I hope they did this to transition him well and did not just observe DayHab with him for a few hours.

The entire system stinks for the kids. Hundreds of thousands of dollars are spent to educate them for 22 years and the true education and intensity they need just suddenly ends. That is so very wrong and we are still in the dark ages when it comes to helping people with disabilites throughout their lifetime.

— added by Eileen on Tuesday, November 15, 2011 at 7:52 am

As someone who looks to you as a role model, I thank you for your honesty.

— added by Liane on Tuesday, November 15, 2011 at 4:02 pm

Seriously, thank you so much for sharing these thoughts, because I know what it costs to say them out loud, because it forces acknowledgment of things I’d rather leave in the dark recesses of my brain. I honestly don’t know how a parent can’t worry about these things, no matter how well things are going, or how much progress has been made. Truly appreciate the honesty, and wishing you a “fast peace trajectory”…

— added by kim mccafferty on Tuesday, November 15, 2011 at 7:39 pm

It’s hard. You’re scared. Me, too. *holds hand out*

— added by Brenda (mamabegood) on Wednesday, November 16, 2011 at 8:01 am

There is no need to feel guilty about exploring and honestly acknowledging and dealing with one’s own feelings. It’s the healthiest way to work through those feelings so you cone out whole on the other side. None of us can hide from all the different things we have gone through or will go through. I know that I will continue to learn from all the experiences and feelings you gratiously share with all of us. You wake up every morning and make a difference in the life of complete strangers — as well as your own wonderful family.

As one of those strangers, I want to thank you.

— added by RB on Wednesday, November 16, 2011 at 12:58 pm

Oh, honey. I am so sorry that you are in pain. Know that I am praying for peace and contentment for you and Nat, and for your whole family.

— added by Laura on Wednesday, November 16, 2011 at 2:38 pm

It is another huge change, but I hope the grieving is easier than for some of the other big changes. I appreciate your telling so much about your emotions and how you handle it all.

— added by Alice on Wednesday, November 16, 2011 at 3:14 pm

Susan, stop it, again, please stop being so hard on yourself for feeling the way you do. Rightly or wrongly, they are your feelings, it’s okay to feel them, and express them but don’t apologize for them or feel anger towards yourself because we all live it every day and everyone “gets” it. It’s sadness and anger and grief and sometimes you just have to feel it. And oftentimes it really doesn’t take anything to trigger it or get you to the dark place it just decends upon you even when things are going well. The grief and hurt is not something you get “used” to, sometimes the flame is on high and sometimes it’s on low, like a Sterno burner, but the grief of having a child with autism doesn’t really ever go away, in my opinion, and can be triggered by something minor or inconsequential.

So I am taking Matthew to his tuition based school for children with autism since he’s been kicked out of the group home he was in due to the State of Alabama’s lack of funds (shocker!) and am met at the door by the “headmistress” of the school. “Mrs. Jones! Mrs. Jones! You are not allowed to bring your child to school before 8:15! That’s always been the rule here! Okay, so I load my guy back in the car to drive around and kill 20 minutes and then take him back to school. I walk him to his class and get him settled into his desk with a hug from me and head for the door but I can feel the tears starting and by the time I’m in my car I’m in the parking lot bawling.

And asking God for the millionth time “why did you do this to MY child! We all feel it.

— added by Sharon Jones on Thursday, November 17, 2011 at 3:02 pm

Sharon, this comment feels a little harsh; I know you don’t mean to chastise me, though, but it has that edge to it.

— added by Susan Senator on Thursday, November 17, 2011 at 3:21 pm

“Why am I always the head case, and he’s the brave and reassuring one? ”

This is me and my husband, too. And your train of thought about Nat’s jacket, that’s typical of me, too, whereas my husband wouldn’t think twice about something like that.

It’s those little things that really pierce my heart, and make me wonder what my son E is thinking about those same little things. I always assume he’s got the same dark thoughts and fears as I do even when there’s no indication that’s true. It’s like I can’t separate myself from him, or him from me.

— added by Audra on Thursday, November 17, 2011 at 5:09 pm

Not having entered the world of adult services with my son, so this may be idealistic ignorance, but, as much as I know I am now one to think such things, feel such things, and will be, there is also something of me that hangs onto an inkling of faith (or is it really a fearful hope) that, when it is most needed, there is always someone in the day that gives a shit. As a nurse, I have more often than not pushed myself the extra bit for a vulnerable person. I do it yet now, even though I am raising my 3 kids on my own, my son severely autistic, tired enough from that, yet giving the bit beyond, really giving more than a shit for the kids on the spectrum to whom I am nurse. Grieve, fear and come back up to believing and hoping and risking feeling the positive will come. I’m not sure there is any other way.

At a grocery store, I was shopping with my son. I saw two special needs ladies shopping with their assigned support person. These people may not have been autistic, but they were disabled. The older lady, a tiny woman, walked behind the other and the worker. She had diarrhea running down her leg. I watched … how many aisles will it be until the worker knows, how many aisles until someone respectfully and gently points it out to the worker? I am not sure how many aisles I observed from afar until I, with my son in tow, went and told the worker. She was frustrated – I imagine she may have been tired, underpaid, embarrassed, among other things. She was not mean to her charge, but it was less dignified than I have learned to become. She took her charge to the restroom, leaving her other charge with the cart, at the end of an aisle. I know how it is to take my son and one of his sisters somewhere – I imagined that more so with two disabled adults. I observed. I went to the store manager and asked her to assign an employee to work near-by this woman to make sure she remained safe until the worker and other woman returned. I then went to the restroom. The worker was tending to her charge well-enough. They were almost done. All I could really do was thank her – thank her for her hard work, for her underpaid work, for having to do such dirty tasks. I thanked her and told her my own son would someday need such support because of his autism. I also hold that memory and fear in my mind. I often cry and disbelieve, but I come back up and believe and speak and live for others as I want for my son – as best I can when I can. You are too.

— added by Stephanie on Wednesday, January 25, 2012 at 9:15 pm

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