Susan's Blog

Thursday, July 12, 2007

Crowded Grouse

Try to catch the deluge in a paper cup.
–Crowded House

Several things going on that are crowding my brain. One is we just discovered a whole packet of summer homework for Benj!!! He has to do 2 1/2 pages of journal writing, ten times, before school starts. He also has to do twenty math problems each month. We just did several time-telling questions. It is a bit of torture, trying to get a child to do homework when it is supposed to be vacation time!!! But I have told B that he “has to” do it, even though it is kind of optional. He is not the kind of kid who who will volunteer to write or do math, but I want him to develop into the kind of person for whom extra work will be more natural. So I say he has to, pizza party or not. So essentially I have to do math this summer and 4th grade level journal generation.

Another thing I’m thinking about is whether to accept an invitation to attend the Special Olympics World Games in Shanghai this October; I’ve been asked to be an Honored Guest. My agent tells me Shanghai is “amazing,” and “a real contrast of incredibly ancient, old and new-new” and that this is “the opportunity of a lifetime,” and “imagine all the contacts I will make.” Sure, but what about my husband and sons, who will be left alone for a week? Can we really manage that? Will they be sad, inconvenienced, etc.? Can I travel alone to China, a 20 hour flight, etc., etc.? Is it safe? Is it scary? Will it be as wonderful as it seems?

And the third thing is my new book. I am about to get my contract (today or tomorrow, my agent is finishing the finer points).This is great, wonderful, etc., but I need to start putting together a small cadre of “gal pal” moms whose kids have disabilities different from Nat’s and who want to chat with me at length about various topics pertaining to their lives. Maybe you have friends whose kids have CP, Down Syndrome, diabetes, whatever who would want to be in my new book. I am looking for different disabilities, different parts of the country, and any other form of diversity. You can email me privately, don’t leave it as a comment. I may not contact you but that doesn’t mean I’m not interested in your story. I store all contacts in a file on my desktop and delve into them bit by bit.

The thing is, I need to have some good conversations on the phone, to kind of get to know these women. This particular book is aimed primarily at mothers, but if you’re a dad of a disabled kid and you have something unique and important to say in terms of how you have fun despite challenge, I’m listening. So I’m generally not looking for fairly severe autism, or Boston area, (I kind of have that covered with my own story) but I will be happy to consider you as well if that is your situation. You will have to sign a release allowing me to use your words in my book. No compensation, by the way, but a chance to get your ideas out there in terms of how you personally stay happy and positive in the face of adversity (overall philosophy and/or specific tips).

Another thing is I feel that I am getting fat. (And no, Mean Anon I am not fishing for compliments I am just expressing my own anxiety. How many times do I have to say that this is my own freakin’ blog and if you don’t like it, unsubscribe. I don’t give a shit. I write and write and that’s what I do. I crow, I whine, I wonder, I cry, I laugh. It goes right from my neurotic core to this computer page. So shut up and stop reading me, you creep.)

And finally, I don’t know if spacing out the Resperdone is so great for Nat or if he actually needs more, period. It certainly helps his anxiety at 4 pm. to do this, but then at 9 last night he flipped out over the toothpaste. D’oh, I don’t want him to need more, that drug scares me.


The China trip sounds exciting. I hope you go.

Also, I loved the rant against Anon. Very funny.

— added by Pete Lyons on Thursday, July 12, 2007 at 12:10 pm

If you do go, don’t forget about the passport fiasco going on right now (if you need an updated/new one).

— added by MarkZ on Thursday, July 12, 2007 at 12:18 pm

You are right, he is a creep.

— added by MarkZ on Thursday, July 12, 2007 at 12:19 pm

Susan, Congratulations! That would be for the new book and the invitation. By now, you should realize that I will always tell you to jump on an adventure, and Shanghai is no exception. Go, it’s the trip of a lifetime.

I think I’m getting fat too. It’s a drag, and my downfall is late night eating. “Ice cream sandwiches are not finger sandwiches, dammit” I tell myself when I take the second one out of the freezer. Ggggrrr.

Talk to Nat’s Dr. again. It’s ironic that the only FDA approved drug for the treatment of autistic symptoms scares you, but I know what you mean. Jared did well with risperdone, but the weight gain was the unacceptable side effect. Invega is a reformulation of risperdone, and Jared’s meltdowns happen once or twice a week, instead of a 4-6 daily meltdowns.

Today is Jared’s 8th birthday, and I’m so proud of the things he’s accomplished in the past year. He has repeatedly and clearly requested a pink cake – I have gotten a few looks as I describe this to others, but please, to see him anticipate his birthday cake and to describe what he wants on it….that’s too wonderful.

Gotta run, I have a lunch/present wrapping/cake icing date with my husband. We are all about multi-tasking.

— added by Lisa on Thursday, July 12, 2007 at 12:31 pm

That is so great! Happy Birthday, Jared! I would LOVE a pink birthday cake. He has great taste in color. Why should one gender own the rights to the most fabulous color on earth?

MarkZ: What fiasco problem? Do you mean backlogs? I think mine is still good. although a terrible pic. (not fishing. it is true. shut up anon)

Pete: Thanks. I hope I go too but Ned is nervous and really seems to want me to say no to this one.

— added by Susan Senator on Thursday, July 12, 2007 at 12:37 pm

I would say go. Seems like a once in a lifetime opportunity.

— added by Joe on Thursday, July 12, 2007 at 12:58 pm

yes, the backlog fiasco.

Lisa, it is a HUGE big deal. Our son hasn’t done that (yet).

— added by MarkZ on Thursday, July 12, 2007 at 1:40 pm

Hi Susan, reading your blog has really enlightened me about what Autism is, how to embrace it and sharing anxieties about how as a parent we can protect our babies! I am just so confused as I have been reading lots of blogs lately and I feel like there is such a war going on in the Autism community. Take and (Droopy) & last but not least, and just as disturbing . I get very scared about what the future holds and reading blogs like these is just boggling my mind. I have noticed that you have not shed reference to them, but I have on occasion seen them comment on your blog. I cannot imagine that they are truly representing Autism because of their ferocious meanness towards each other. Are they really Autistic? As a parent I am trying to have as much info & resources that I can get so that I can be prepared to be my childs biggest support. Thank you for your blog. Your writing is always so interesting and I am so looking forward to your new book. You and your family are so beautiful. I am sorry to post anonymous, I do not have a blog ….yet. Good luck to you Susan.

— added by gail on Thursday, July 12, 2007 at 4:13 pm

Gail –
Thanks for reading. Trust your gut. People are people, autistic or not; some are mean, some are kind. Some will take no prisoners to prove a point. We are all human, and very different. Learn from whomever you can, including your autistic child!

— added by Susan Senator on Thursday, July 12, 2007 at 4:40 pm

Just popped back to read comments, and thanks everyone, we are all looking forward to Jared’s party tonight.

Gail – I have learned alot about parenting from Susan, Kim Stagliano (reference her “crapisodes” blog entry if you want to shoot something out of your nose while laughing), Mom – NOS, and Laura from “This is what I do”. They have shared their lives and experiences with us, and we are enriched becuase of it. Differing opinions (except for mean anonymous types) are also important. Reading Amanda’s (ballastexistenz) comments annoyed me, but made me want to understand her perspective. She has experienced things that would make you shudder, and it’s clearer to me why she is such a fighter for independence.

With a spectrum disorder, there is a spectrum of parents coping with the demands of ASD. Respect your gut instincts – advocate for your child in the way you think is best.

— added by Lisa on Thursday, July 12, 2007 at 5:07 pm

China would be quite the honor. I can understand your hesitance. Passports: I applied on 4/28 and got it today.

Act quick if you decide to go.

Anon can go on a slow boat to China.

And everywhere you go, always take the weather with you.

— added by Someone Said on Thursday, July 12, 2007 at 8:44 pm

China – Go!!! I think you can probably work with Ned and between you two very smart people come up with a plan that works while you are gone :o)

Lisa – my Ky LOVES pink. It’s even better if it’s shiney and sparkley 😉 I do a lot to stress that there are no ‘girl’ or ‘boy’ colors – and make sure to point this out in front of his friends too.

— added by Jen on Saturday, July 14, 2007 at 8:06 am

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