The Cookbook Junkies

Today I baked peanut butter cup brownies for the pediatrician’s office and for the tech at the pharmacy – who always remembers my name. She is kind. Even when she is stressed out and might not be grinning ear to ear – she is always attentive. I wrote her a note that read something like this:

Thank you for always being kind. When you give birth and are hopelessly in love with a person with autism sometimes life is hard. Some days your kindness is just what I need. (Or something of that nature.)

She called me an hour later to tell me they were delicious and that if there is ever anything she could do to let her know. I told her she already does enough and then asked her about babysitting this weekend. “I have a customer,” she said before I heard the dial tone. 🙂

People are so busy and I’m sure she sees hundreds of customers a day and it is nice to see someone other than myself who has a memory (sorry not tooting my own horn – I just have an excellent memory and I would totally score on that Instant Recall game on GSN). Granted I am at the pharmacy two or more times a month and then there are times I’m there two or three times a week (when Andrew gets sick they switch around antibiotics) but she just remembers me and it is refreshing.

Lots of things coming up. Bryan’s 25th birthday (holy crap). Good thing I had him when I was 12 or I’d be stupidly old now. Jim’s 45th birthday. Seventy five cross cookies to bake and decorate for Flo’s great nephew’s communion. Andrew has a play on the 20th that I have to decorate a T-shirt for – I’m going to draw the globe in a heart shape – it’s all about loving our earth. Jim goes back to the sleep apnea doctor to get his anti-stop breathing contraption and then on the 19th of May – he’ll go to Johns Hopkins to the colo-rectal cancer risk assessment clinic to get their opinion about his genetic testing. He’s already past due for his colonoscopy – he drives me nuts with his procrastination. Last freaking April he got those genetic tests and he is still dilly dallying. I swear to God – if he dies on me – I’ll kill him.

Andrew is so-so. He hasn’t hit me yet today and it’s 5:57 p.m.! Score.

Easter was nice. Andrew had a hard time at church but we survived. After we came home and packed up the goodies to take to Aunt Peggy’s — we decided to stop at the cemetary before going straight to Peggy’s. We picked up some flowers and Andrew picked out red carnations for Nana, GrandDad and Aunt MaryEllen (all in the same grave) and he picked out pink carnations for Aunt Peggy (because I told him – it will be nice to get Aunt Peggy some flowers too). He gets in the car and says so sadly, “But I didn’t know Aunt Peggy died.” Poor kid thought because we were getting flowers for Peggy she must be dead! We had a laugh about that one and I made a note – more flowers for people when they are alive! (Hear that honey? Jim??? Flowers – remember those?) Forget the flowers – just get your colon situated. Oh, you know what I mean.

So far today is a good day.

His teacher said he did much better today. While walking to the car I went to grab his elbow (we can’t hold hands anymore – he told me yesterday “you feel Irish and I’m American” — at least I’m my true nationality now – before he said, “you feel Chinese”) — he said, “no mommy I want to hold your hand”. It felt like someone gave me a winning lottery ticket. The hand holding lasted 15 seconds. That was just fine with me.

I’m lost and second guessing myself.

To me (and my husband) Andrew’s regressions: his screaming “you are an idiot” to a kid that gets too close to him on a rope structure at the Bronx zoo, his slapping me in the face when I chase him down and hold an arm to tell him not to run ahead, his angry responses to friends and strangers alike, his hitting his friend in the back because he “misunderstood” that Timmy wasn’t teasing him he was sing-songing about the Bug Carousel, his increased flapping, his S.E.V.E.R.E. anxiety about everything from the car window being rolled down, “please close the sunroof I’m scared”, traveling on the highway, going on a bridge, going to school, going to church….I could list how things keep seeming to get worse for pages and pages but that would bore you (anyone? anyone? out there) and just increase my sadness.

Regina, my friend, and a special education teacher herself doesn’t think this behavior is atypical – that all kids do this. I don’t see all kids doing these things – am I blind and deaf to other children? I don’t think so.

At church, Andrew actually kicks the seats in front of us if someone, particularly a child sits in front of him. I don’t see other kids doing this – other kids are happy when a child sits near them – a partner in crime. Not my boy.

I guess I keep on waiting for my child not to be autistic. I keep on waiting on a miracle. The school psychologist when I spoke to her for five minutes this morning – left me feeling even more depressed. She was listening but not listening – because she was standing guard on the sidewalk. I suppose if your kid isn’t ripping off another kids head – all is well. I keep waiting for that day to come. “Mrs. Hartin you were right – Andrew is very violent. Billy can’t find his eye.” I know they miss things, I’ve seen it myself and one day someone is going to get hurt. He’s only five now (almost six) but soon he won’t be a little big boy. He’ll be a big kid who will hurt someone. Please don’t let that happen Lord (are you listening God?).

Yes, he is respectful to the teachers. But not everyone in the world gets down to his level, talks all 900 number voice to him and understands how to deal with him. Another child, another adult — they don’t get it – they talk to him and they are likely to get a fistful of grubby fingers. The real world – people we got to get him ready for the real world.

I feel like I always have to be on. Again, Naomi Campbell’s handler. I get so mad seeing other parents relaxed, talking to their family members and letting their children frolic and I have to be within a few feet to pull a child out of harm’s way. It’s mentally and emotionally exhausting but it is what it is.

Everyone I talk to about this PANDAS thing seems to understand only one compotent of the syndrome — the OCD aspect — (there are many if my reading and comprehension skills haven’t failed me) – not that Andrew has been confirmed to have it – but it seems to me OCD can be described as doing one level on a Wii game over and over and over and over and over again – amongst other things. All I know that is when Andrew is coming down with something that causes a fever – for a week or weeks before – his autism really SHINES – which makes me think that he has something else besides the autism and ADHD issues – that when he gets a virus/bug that everything becomes worse and the pediatrician thinking the PANDAS type syndrome makes sense. (To clarify – I know without a doubt Andrew has Asperger’s – no questions – but I believe something else also kicks in before he gets sick – something that ups the ante.)

Andrew has totally changed his eating habits. He can’t stand any smells. He won’t hold my hand anymore. I have to hold his covered sleeve. He freaks to high heaven when I have to change his clothes….here I go again boring you (anyone? anyone?).

I keep on waiting….

PS – As I re-read this I know I am ranting – but that is what I do best. 🙂