Susan's Blog

Thursday, December 13, 2007


The back of my hands are bloody and my spirits are low. Big struggle this morning with Nat, especially between him and Ned. Nat would not sit down in time-out this time. That’s a first. His arm is a mess from his biting. He let me clean and bandage it. I was struck by the odd juxtaposition of little blue ice bunny sitting atop Nat’s muscular bruised forearm.

I can’t get the image out of my head of Ben racing upstairs to escape as Nat came close to him. “Dad! He’s biting his arm again!” he shouted. That’s when the struggle really began. I was upstairs trying to get dressed for Ben’s class Breakfast Share. (Ben had a supporting role in a skit, “Native American Cinderella.” He had been so excited about it; his classmates had all said that he should be the one to play the Chief. So last night he constructed a mask with feathers on it. I couldn’t wait.)

I got dressed without showering and ran downstairs to help. I tried desperately to smile so that Ben would focus on the upcoming excitement. Ned hurried Ben off to school while I stayed with Nat. I felt like I was guarding Max, even though Max is so big. It is the unpredictability and the adrenaline that pumps through Nat that makes it so frightening. I tried to make myself calm — invisible, really — so that Nat would not detect my fear. It only worked up to a point. He eventually came up to me, clawing at me. I stood my ground and kept my voice soft, trying also to rescue my hands, but he is very quick and strong.

I have set up a meeting with our team to talk about planning his residential placement. In the early fall Ned and I went on a tour of some, and got an idea of what they can offer. There is a waiting list, which is a good thing, because it gives us time to plan and transition — all of us. I tell myself that Nat is 18 and it is not horrible of me to plan this. That it is probably better for Nat, to have round-the-clock structure. That it will be better for Ben, not to have to live with fear.

I tell myself a lot of things.


Sue, I haven’t been commenting lately. I have been in a black hole here. But your post today is the worst fear that I have. That my son will get so big that I won’t be able to deal with him anymore without fearing him. I already fear my son who has schizophrenia. What am I going to do when my son with autism grows up? My son who has schizophrenia is in residential placement and I feel guilt, but at the same time, I am protecting my little ones. Sometimes being the mama bear sucks.

I know that it is deep within my son, the voices that tell him to kill his younger siblings and his parents. I can’t live with that, I can’t sleep with those voices in the same house with me and them.

I don’t know what Charlie will be like as an adult. I have joked that when we are ready for the nursing home, we will have to find one that will take him with us, but there is a real black fear there and you are there now. What can I do to help?

— added by Mom on Thursday, December 13, 2007 at 9:59 am

When days like these come, I know it seems rather hollow for someone to point out to you that it’ll get better, and to just just hang on. I know because we’ve lived through months and years of nonstop, round-the-clock “sieges.”

For what’s it’s worth, you have my prayers, that in this season of peace and love, these two precious gifts find their way into your home soon. Be strong, my friend (dare I presume too much? Ah, but I feel like you are a friend, even if you don’t know me), and keep the faith. I send you light from across the world.


— added by Kittymama on Thursday, December 13, 2007 at 10:22 am

I did not mean to make you feel scared. They are two different people: Charlie and your other son. And Nat is different from Charlie. There is no ability to predict the future here. Autism does not overtake our boys; it is their surroundings that get to them and then they can’t find a way to deal.

I don’t know about the horrors of the schizophrenia you have endured, and it sounds painful to say the least. I can only speak about us. I only know that I feel for Ben, Max, AND Nat. I wanted more control over what happens than they are getting. I feel that as the mother I should be able to get through to Nat as well as make him, Ben, and Max feel safe.

Well, it’s over now, and the residence is the long-term plan. He needs supported living; I can’t pretend that he doesn’t. It makes me sad to have things go this way, though.

— added by Susan Senator on Thursday, December 13, 2007 at 10:23 am

You are indeed a friend. Bless you.

— added by Susan Senator on Thursday, December 13, 2007 at 10:25 am

Oh, Susan. I just want to give you a big hug. It’s so hard, what you’re dealing with, but you do it with such strength and such grace and such obvious love for your children….all of them.

You’re a good mama.

— added by ASDmomNC on Thursday, December 13, 2007 at 10:54 am

Siege mode sucks, there’s no doubt about that. Our trip to get our Christmas tree ended quickly with a meltdown. My shins are peppered with bruises, Thomas was panicked that we weren’t going to get a tree, and my husband was peeved because he predicted trouble. Ho,ho, no.

Met with Jared’s Dr. yesterday and we are going to try some light therapy and Wellbutrin between now and March to address his seasonal mood disorder. He also mentioned a small school program that sounds interesting.

Susan and Jan, I am in awe of the strength you’ve both had to muster, it’s mammouth. I ‘ll echo Kittymama and wish you both peace and superpowers for the holidays.

— added by lisa on Thursday, December 13, 2007 at 11:07 am

I feel your pain. really. it just has to be so hard. i read so many blogs about autism-and yours is really the only one dealing with what happens when these kids grow up. i have an 8 years-who we worry about and stay awake at night thinking about-and wonder what it will be like when he is 18. you are an inspiration-because you are THERE. you just cant do any more than you are-and you have to put just as much love and care into the other two young ones in your home-they matter just as much.

— added by Anonymous on Thursday, December 13, 2007 at 11:20 am

I am so sorry for your pain and distress.

This is the natural order of things. Young adult males feel ready to fly from the nest. All of them do regardless of circumstances. Your son will flourish in supported care and he will be so proud to have you to his place for dinner; we know that he can bake! You live in a state with a wide variety of community based living arrangements and tons of expertise.

In the meantime, holidays are stressful for us all, stick to your plan of getting away with your husband!
We are all thinking of you and hoping things calm for you as well.

— added by Anonymous on Thursday, December 13, 2007 at 11:38 am

I’m watching the beautiful snow come down and I’m thinking about you. I wish I had some healing words.

Just know that I care. So many of us do. And thank you for taking the time and risk to be so open with all of us. It turns some of the hardship into something helpful … informative.

I will be praying that the right placement falls into place at the right time. For all of you…

— added by Judith U. on Thursday, December 13, 2007 at 2:49 pm

Like the 1st anonymous, I have an 8-year-old and I also admire you for letting us know what the future may hold.

Henry has just started some medication to deal with his aggression, and he also has a younger brother that I worry about.

You are very brave, Susan, to share all of this with us, and your sons are very lucky to have such a strong mom.

— added by gretchen on Thursday, December 13, 2007 at 3:00 pm

I can’t really add much here. Everyone said it all. Just know that I care too. -Tina G.

— added by Anonymous on Thursday, December 13, 2007 at 4:01 pm

You’re all very sweet. Ned’s home early, so now everyone is home, safe in this snowstorm.

— added by Susan Senator on Thursday, December 13, 2007 at 4:26 pm

Wishing you peace on this snowy night and strength as you all face the future. These are the kinds of decisions that don’t have clear-cut right answers – the ones you have to make without ever being able to know “what would have happened if”. But, of course, those kinds of decisions are the most important ones we make as parents. You and Ned will do the right thing. You will.

— added by MOM-NOS on Thursday, December 13, 2007 at 4:59 pm

I tell myself a lot of things.

Well, my heart broke some when I read that. I wanted to hug you so badly. I still do.

Being busy in college (yay for winter break!), I’ve taken to reading big chunks of your blog at once, since I don’t get around to checking it often. I’ve spent the last hour or so reading through recent entries and comments. Many comments professed thanks for the guidance and wisdom you offer, whether purposely or not.

Right now I’m especially feeling thankful for that guidance and wisdom. And the funny thing is, it’s not like I’m in anywhere near the same position as you, or as most of your readers (judging by the comments, anyway). I’ve got my “own” Nat, but he’s my older brother, not my son, and he doesn’t have autism. And I believe my parents hope and expect for him to someday live on his own — or, at least, not in a residential facility.

The past 24 hours have been interesting, because yesterday I read this article in the Globe, which you might’ve already read yourself:

I thought it was a wonderful story, just as I thought your article in the Globe magazine was great. And like then, when I contacted you and showed you my piece on “my” Nat, I decided to contact one of the Morris’. So I did, through Facebook. I sent a message to Jesse Morris, the “older brother” of the group. I talked about Nat a bit, saying:

My brother Chris and I both would take care of him in a heartbeat, but like your parents, our mom and dad don’t want us to be “burdened” by him. Which is silly, though understandable.

He replied, beginning:

Josh– thank you for taking the time to write. its responses like yours that make living each day all the more worthwhile.

I wrote back:

The funny thing is, I thought to myself a few minutes ago that it’s people like you and stories like yours that make life worth living, even with so much stuff to be down about all the time.

I wrote a bit more, and hit send. And that’s when I told myself to check out your blog.

I’ll be sure, Susan, when I wake up later today, to give my mom, Susan Begley, an extra-long hug, and I’ll be doing it for you. And the next time I see Nat Begley give Mom a hug, I’ll be thinking of you and your family.

– Josh Begley

— added by Anonymous on Wednesday, December 19, 2007 at 5:31 am

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