She Reads (Again!)

I have just finished reading "Autism Heroes" by Barbara Firestone. It's really a lovely book that profiles 38 different families living with autism. How I wish this book was available when we first started this journey. The stories are full of hope and encouragement, honesty and love. It's large — almost a coffee table book — but full of beautiful black and white photos and pretty lengthy stories. The children profiled are of all ages, their families from all walks of life.

I loved it.

I loved all the different voices of moms and dads as they tell of first getting that diagnosis and what their road has looked like since. I loved each bit of advice offered to other parents. It made me feel less alone and I was sad when I finished it.

I met the author at a book signing a few weeks ago. Barbara Firestone is the founder of The Help Group, which runs six specialized day schools in southern California for children with autism. All the royalties from the book are being donated to The Help Group to support its efforts on behalf of children with autism spectrum disorders and their families.

You can't beat that.

Stepping Out

MOM-NOS has tagged me for a meme. Here are the rules:

1) Link to the person who tagged you, and post the rules on your blog.
2) Share 7 facts about yourself.
3) Tag 7 random people at the end of your post, and include links to their blogs.
4) Let each person know that they have been tagged by leaving a comment on their blog.

First, it really is hard to think of seven salient facts about yourself — especially ones that you think others might find interesting, so I apologize in advance for those of you I am about to tag. Here we go:

1. I am a reality TV junkie (though I like to think discriminating). I love Survivor, Amazing Race, Top Chef, Dancing with the Stars. I hate The Bachelor, Top Loser, Fear Factor and all MTV shows. I am fortunate that my husband is also a hopeless junkie. Together, we watch way too much of this stuff.

2. I love to sew. I love anything and everything crafty, but not the Martha Stewart kind of crafty — she's too much. Really. Even though I just finished reading the latest Living.

3. I have not picked up a pool cue in nearly four years and it's doubtful I will in the next four, but there was a time in my life that I played pool (or billiards) every single day. Not only did I captain my pool team to a regional championship title, I used to be pretty good. The first time I met my husband was in a 9-ball tournament.

4. I can't cook. I mean I can cook, but I hate it. I am uninspired. "What will I make tonight?" "Does it involve meat?" "All the meat is frozen." "Let's order a pizza."

5. Aside from my very rewarding (though tiring) job of being a mom, my dream job is to be a floral designer.

6. I am not the only person in my family who has twins. My brother has identical twin girls — they are 13. What's cool about this is that identical twins do not "run in families." According to Wikipedia, "... [identical twins] is not considered to be a hereditary trait, but rather an anomaly that occurs in birthing at a rate of about 3 in every 1000 deliveries worldwide."

7. Though I went to school in northern New England, I have never skied.

Okay, phew. Done! I'm tagging the following seven people. Play only if you'd like and only if you'll have fun!

Stimey at Stimeyland
Mom to JBG at Hoop Dee Doo and PDD
Aliki at World of One Thousand Different Things
Tulipmom
BubandPie
Christine at Day Sixty-Seven
Mom Without a Manual

Report Cards

Both my boys brought report cards home last week.

I'm not surprised that Sam is more advanced than the other kids in his class with his spelling, reading and even math. Next to Thomas those are his favorite things in the world. I'm also not surprised that even though he is very verbal that the language coming in is hard for him to process. He needs a good amount of time between a directive and being able to follow through. It used to frustrate me before I realized that no, he was not ignoring me, he was just "processing" my words. If I give him enough time, he always answers me appropriately. One lovely thing is that his teacher said that he was the only one in her class who scored positive for empathy, that he often hugs and feels sad for others when they're sad. And yet — he is still challenged socially. He adores another boy, C, and constantly seeks him out to play, but not always in the best way. Sam's tendency is to hug, lunge, tackle — with mixed results. If it's at home and John is his target, he can get his butt bit. Literally. I'm encouraged that he does appear to be learning from C that he does need to back down sometimes.

At the other end of our spectrum, John is not meeting several of his more ambitious IEP goals. His team would like to see them rewritten, to make them more attainable for him. They invited me into class to observe for an hour last week and I've been living with a huge lump of sadness and guilt in my chest ever since. All I can say is that part of me, no matter how accepting I am of their diagnoses, no matter how far I've come since we first heard the word autism, a part of me dares to hope that John will improve. It's the hope that as rapidly as Sam learns new words, that is how fast John is absorbing the world he lives in, that even if he is unable to tell me about it, he will someday. Our lives are so busy, so packed with school and activity and therapies that I don't often have time to see, to really see.

Or perhaps I'm just scared to see some days. Hope is so tenuous, so fine a thread, that a good gust of wind can make it waver.

At home I've watched him shrug off Sam, his father — even me at times — with cool indifference. He is still largely nonverbal. I had hoped though, that what? he was a different child at school? Well I did get to see. I saw how John simply will not look at anyone, how he strained to not make eye contact. I saw how he seemed limp, tired, unhappy even. I am mindful that this was a tiny glimpse into his day, a snapshot. I remember other glowing reports about words uttered, smiles offered, eye contact made. I cling to these reports even as I indulge my mommy fears yet again. I am wallowing right now, a terribly self-indulgent activity that's not doing him any good. I am scared, plain and simple. How can I make things better? Is this the wrong program for him? Will he ever talk to me, to his brother, to a friend? Will he ever have a friend? What if the answers to all of these questions are just, well…no? What if he never has those connections that every parent wishes for their child?

And is the universe just waiting for me to let go?

Wordless Wednesday

Independent Living

"No school. Sam stay home."

What do you mean buddy? You're going to see H_ and D_ and A_. And all your friends? At school.

"Sam stay home."

He's not sick, he slept well, he ate his cheerios. This is a child who hates weekends because there's no school.

Why, sweetie? As soon as I say it I see the confusion cross his face. We've not had much success with those Why Questions.

We go to the end of the drive to await his bus and have pretty much the same conversation we always do: (Sam) "Is that a bus?" (Me, repeating) Is that a bus? (Sam) "No, that's a car." (Sam) "Is that a tree?" (Me) Is that a tree? (Sam) "That's a flower!"

Today he sprints back up to the house and says "No school, Sam stay home."

Hmmm... I'm a little concerned. Did something happen at school last week? Did his bus driver yell at him? He seems happy though, content. Even when his bus arrives and I have to scoop him up and carry him back down the drive, he doesn't cry or squirm or yell. No, he's not really protesting. He goes up the steps and hardly looks back. I wait for a phone call from the school. Maybe he's upset, maybe I shouldn't have sent him?

**********************************

He comes home laughing. He waves goodbye to his bus driver. We go through his backpack and I admire his skeleton artwork from the week before.

Sam, guess who's coming after lunch? Elly! (our very part-time nanny who's here two afternoons a week)

"No Elly. Elly at Elly's house."

But you love playing with her sweetie. What's up with this boy? Normally, he'd run to the window to see if her car had arrived.

"No Elly. Sam go downstairs play."

She arrives and he ignores her at first. But soon enough he's tugged her towards his trains and I go upstairs to work.

**********************************

It's been a long day and hubby has to work late so I'm starting baths early. Bathing twins alone can easily take double the time without the tag team approach.

Okay boys, time to go upstairs for baths, I say. John moves towards the stairs.

Sam blocks the hallway and announces "No, Mommy."

Did I really just hear No, Mommy? It suddenly dawns on me that Sam has been feeling his power and exercising his right to disagree with me all day long. Just for the sake of disagreeing! Otherwise, what's with this mischievous grin, this happy compliance even when I force the issue?

And just how neurotypical is this? I'm not sure, I never am — but I'm thinking it's pretty darn good.

Goobers and Goblins

Behold Thomas the Tank Engine and his royal fuzzy sidekick, Elmo.

This Halloween was the first time since I was thirteen years old that I trick-or-treated. I've never been the greatest fan of Halloween — there's something creepy about dressing up in costume and going door to door. Oh, I know that's the very thing that others love, but me? Not so much. This was the first year, however, that we felt the boys would enjoy it. Especially in light of the numerous pumpkin-, ghost-, and witch-inspired artwork that's made its way home from school this past month. Or Sam's non-stop talk of ghosts and vampires and five-pumpkins-sitting-on-the-gate. Not to mention the fact that this sensory-challenged child, especially where it concerns food, devoured an entire Snickers bar in under thirty seconds. Yeah, I thought Sam might get into the whole candy aspect if nothing else.

So we set out. The first door was opened by a scary witch and a barking Black Lab. Sam muttered, a little unsure, "It's okay?" and held out his bag. Even I was a little wigged out, so when John (or rather, Elmo) screamed and melted into a fuzzy red puddle right there on the porch and made it clear that he would not be standing up again of his own accord — I understood. After walking up the hill with him clasped at my neck, I still understood but handed him to his dad.

Sam quickly got into the spirit though. No matter my prompts of "say 'Trick or Treat'" and "Thank you!" As soon as the candy hit his bag, he'd announce "Next house!" John hung back in the relative quiet of the sidewalk, and seemed to enjoy this unprecedented event: surveying our dark neighborhood from the tall perch of his dad's shoulders, as Sam tugged all of us along.

It's been nearly thirty years and I still don't love-love Halloween? But I will do this every year just to watch Sam break free and run to join a group of approaching children as they knocked on a door. No hesitation, no looking back at me. That soaring in my heart like a whisper "He's going to be okay." I will do this next year, too, with the hope that John may like candy then, that he may enjoy wearing another costume, and that he'll let me hold his hand as we walk through our dark neighborhood, knocking on strange doors.