Sign the Mona Lisa, With a Spray Can, Call it Art

Oh how I love Foolish Heart. If you don’t know what I’m talking about, it’s a song by the Grateful Dead. On Saturdays Bryan has speech group. They usually do some sort of activity where they have to talk or interact, like cooking, for example. The idea is to create a social situation where you are forced to use language to communicate. Sometimes Jason goes too. He is part helper, part victim. On this particular day, they did a little experiment. They had to close their eyes and imagine a fish tank filled with fish and anything else they could see in their mind’s eye. I have always loved that expression, mind’s eye. So clever! I never know ahead of time what they are going to do at group. When I picked them up, Cindy, their OT, explained the exercise to me and showed me Bryan and Jason’s drawings. The interesting thing was that they were very similar. For some reason, I had a lump in my throat. They were not similar, like oh wow they are brothers isn’t that genetically interesting, but similar in that, could a psychologist say which one was from the child with autism and which one was from the typical child? I am betting they couldn’t. Goes back to what we mommies and daddies knew all along. It’s in there. It’s just locked up under some secret code no one has completely broken yet. It was also interesting because I always think of Bryan as so visual and not imaginative. My bad, clearly. He of course has an imagination, but seeing the manifestation of it on paper was just great and one more lesson in the “pay attention mommy, i’m not a total dope category”.
Earl sent me a you tube video of two adult brothers. The older boy has autism and the younger one was typical and was asked what it’s like to have an older brother with autism. The video shows the boys in the car singing together. The younger one, who is about 20, talks about their relationship. I hate to brag, but I could see this as Bryan and Jason in the future. Jason is very over protective of Bryan and at times very bossy, but they are best friends and there is real love and friendship there. The narration by the typical brother was meaningful, warm, and moving. Without even putting the sound on, however, the rhythm of their relationship was apparent.
We are a little more than one week until Bryan’s Bar Mitzvah. I am so excited. I can feel the celebration and just can’t wait to see the boys in their suits. I have heard Bryan over the microphone and the sound is a real treat since he often speaks the prayers in a soft voice. The image of him with a yarmulke standing on the Bima saying prayers that millions of other Bar Mitzvah boys have done is already in my heart, now just can’t wait to get the pictures to match.

We Don’t Negotiate With Terrorists

I knew the day would come. We have reached the point where Bryan has become the easier child. Now don’t get all excited, he hasn’t recovered from autism, he still has all of his issues, his constant repeating, his getting up early, his limited and often inappropriate communication. But on balance, right now, he’s easier to deal with than Jason, who is fresh (just so you know, I don’t tolerate fresh well at all), spoiled, and just tough. He is clearly going through a phase and looking for attention.
Here’s how it goes.
1. Eating: Bryan is a virtual eating machine. He has none of the sensory issues that many kids with autism have regarding food. He is hyposensitive not hypersensitive. He doesn’t really eat veggies, but he eats meat, bread, cereal, cheese, fruit, etc. He doesn’t care if it’s too hot or too cold, whole wheat, seeded, unseeded, you get the point. Jason is the other way. This turkey is too dry, this turkey is the bad turkey, I liked that turkey last week, but I don’t like it this week. This pop tart is too hot, this one is not hot enough. At dinner the other night we were having spaghetti. Bryan ate plenty. When he was done he was having ice cream for dessert. He prefers vanilla but if we only have chocolate or coffee or mint chocolate chip in the house, he really doesn’t care. Jason however, tries to figure just exactly how many bites of spaghetti he must eat, (this is after he has already ditched the first plate since he didn’t like that sauce and now is having butter on his spaghetti), to get to dessert. After two bites and asking if this was enough to get to dessert, Earl looked at him with exasperation and said “we don’t negotiate with terrorists!” We all laughed, Jason gets us, thankfully, and proceeded to have a few more bites of spaghetti.
2. Mornings: Bryan wakes up too early and that is not fun for us. But he kisses me good morning and he is sweet and gentle now. After he has breakfast, he goes upstairs, and unprompted, picks out his clothes, showers, uses deodorant, brushes his teeth, gets dressed, makes his bed and scolds me to make his lunch if I have not done so. Kids with autism, like many of us but to a greater degree, crave routines and they follow them to the letter. He likes to take baths in our big bathtub on the weekends. He is a little too old for me to see him do this but I walked in on him Sunday morning and he said “Mom, where’s the nail brush?” I was on the phone with my Mom at the time and we both laughed. Jason is tired, and practically has to be dragged up to the shower, still asks me to pick out his clothes, must be reminded 5 times to make his bed, and is always lagging behind. Bryan tries to hurry him along. “Jason get in the shower. Jason make your bed.”
I know you are not supposed to compare your children, you’re not supposed to eat fatty foods either.
3. Around the house: If I ask Jason to help out, like feed the dogs or take them out, he will tell me he fed them yesterday or took them out yesterday. You see where that conversation goes. Bryan does limited chores, but if you give him one he does it. If we ask him to take the dustbuster and use it on the steps to vacuum the dog hair, he does it and puts the dustbuster away. No whining, no fuss. When Mom asks you do it, end of story.
4. Bedtime: Bryan is tired. “Mommy, Daddy, I can go to sleep. Goodnight.I give you a kiss goodnight. That’s it. No stories, no drama, out. Jason, “Mommy come up with me, Mommy please read a story, Mommy I see a monster, and then he makes up a bunch of stuff that I need to call bullshit about. Don’t get me wrong, putting a kid to bed is one of life’s sweetest moments and Jason and I often have some serious “pillow talk” but some nights the drama surrounding it can get old. I love the cuddling, but when he makes up things or pouts or gives me a hard time for no reason, it’s exhausting.

Why does this matter? Well it does if you live in our house. It is important to take notice of the change, the ease in which we now live with Bryan. The future is still unknown, the overall anxiety he deals with is still present, but compared to a few years ago, when he used to beat the crap out of me physically and mentally I couldn’t get my head straight from worry; the peace and the tranquility are welcome friends. For years it felt like he was completely a daddy’s boy. Although he loved me, and knew I loved him, we didn’t have the connection we have now. We walk arm in arm wherever we go. He looks at me differently, the walls are down. I know things have changed, but more importantly he knows. It’s as if he knows he isn’t going to hurt me anymore so he feels better too. He has more control of himself, and who doesn’t feel better when they have more control? On Saturday I was in a store with the boys shopping for clothes. Bryan and I were walking arm and arm and Jason said, “Walk with your arms around me Mom, not Bryan”. I said “I have two arms, one for each of you” and he said “no, just me”. We’ve never had that before.

Product Placement

goldseesIt’s amazing to me how just the sight of a box can make me turn into mush. A few days ago at work I was talking to my work BFF and I saw the white See’s chocolate box. I took a good look at it and got so teary eyed. It reminded me of when I was a kid/young adult and we used to go out to Arizona. My family had a vacation home in Scottsdale and we had lots of fun out there. We used to go to the See’s store and pick out the chocolates individually. Not to be too corny but it was a sweet memory of fun times with my family and for some reason just “got” me. This morning driving to work I called my cousin Andy. He and I share so many great memories because we grew up much more like brother and sister than cousins. This morning he told me he was eating Product 19. My grandfather ate Product 19 and that just made me smile. When I see Vienna Fingers I am immediately brought back to my Nana’s fridge in the Bronx. I didn’t even like them that much, but those were the cookies she had, so I ate them. Now I eat them because they remind me of her and make me feel good. I see a Mallomar and feel all New Yorky. They don’t sell the down here in the summer. Jason has learned to appreciate the fine art of the Mallomar. It’s genetic!
My Dad loves Goldenberg’s candies. Even Jason knows that if you go into the candy store in the Boca mall you should look for those candies to buy for Grandpa, but Grandma might get mad at you!!! These little products can trigger all kinds of visceral responses that transport you to another time and place. Sometimes they are not always this pleasant, like the sight of a Kamikaze; reminds of when I puked in front of my law school boyfriend while he tried to open the door to my apartment.
Music of course does this too. My sister and I still chuckle at the time my grandfather asked us about the lyrics when we were in the car listening to Jefferson Starship singing “Miracles”. It’s a pretty risquĂ© song, which I didn’t realize at the time since I was a little kid, but I’m fairly sure we were on the Major Deegan (not only will my sister tell me exactly where we were but she will also know where we were coming from or going to) and when my sister sang the lyrics for him, he thought it was hysterical. He was fun and naughty like that!
My first real boyfriend and I had a song. “Just What I Needed” by the Cars.This was from 1981 and I still think of him when I hear it. When our boys were babies I sang to them which will probably scar them for life due to my singing voice.But all kids love the sound of their mother’s voice or we tell ourselves that at the 4am feedings! What did I sing? “Close to You” and “Raindrops Keep Falling on My Head” because they were soft and melodic and I knew the words. We have been selecting music to go along with the video montage for Bryan’s Bar Mitzvah and for the candle lighting. Luckily Earl and I like the same music (mostly) so it has been fun. Doing this together has been one of those joyful tasks when you see the fruits of your marriage. You get to see the growth, the give and take, and the friendship. We laughed, we cried, we got each other and although the Bar Mitzvah will only be a few short hours this will definitely be one of the memories I will go to when I think about it in years to come.

Up the down staircase

up the down

So I handed Bryan a plate this morning only to realize I made his microwave bacon on Jason’s homemade plastic Seder plate. There are too many issues to count, so we can move on. This was after I heard Casey our cat puking at about 3 am but I was unable to find the cat puke when I woke up. Clearly that will be a lovely surprise at another time. At about 4:30 Jason woke up screaming he had a bad dream. He has been sick since Saturday; fever, cough, red throat. I went in to see what was happening, and he coughed right in my face. If I get sick, I will not need that dumb app that tracks who got you sick, I will know exactly when it happened. The truth is he is a very sweet sick little guy. He is very lovey dovey, which is cute. Mommy hug me, mommy i love you. Then, Mommy, can I rent a movie? Can I get an app? Guess he’s not that sick…
Last night we had another Bar Mitzvah practice at the Temple. Earl had not seen Bryan practice before and I caught a little twinkle in Earl’s eye watching his first born up on the Bima. Ahhh. Irony. Bryan speaks so softly when reading or singing but at 5 am he is so loud. Oh well, at least he will have a microphone at the Temple. We are 3.5 weeks away from the event and my anxiety has started to pick up speed. I had my first Bar Mitzvah nightmare the other night. Truthfully I’m really not all that worried that everything won’t get done. I just want Bryan to enjoy himself and that is way more of a challenge then anything else. He always requests to go places and do things only to get there and then asks to go home. I don’t want him to ask to go home the minute we get there on the day of his Bar Mitzvah!!! One thing I do know; he will be happy to see everyone. One thing is for sure, for a kid who has a “social disorder” he’s pretty social. He loves people and loves the family. My fingers and toes are crossed.
One thing that bugs me is what people say. “He’ll do whatever he does” or “I’m sure he can do some prayers”. or “some autistic (UGH) kids understand Bar Mitzvahs”. Listen people, he’s our son, he’s not a doll or a toy or thing. He’s a fabulous, soon to be teenager, and he is going to have a Bar Mitzvah. Last night Bryan told me “I’m going to be a teenager, I’m going to be a man.” Never underestimate your kid.

Publix. Where Shopping is a Pleasure.

When you live in Florida Publix is your grocery store. It is a family owned business and they really do a great job. They have their own brand for many items and their quality is good. This post is not about Publix. Bryan likes to go to Publix with me, but his eagerness or willingness to go with me is conditional. I can look at the DVDs? I can get gum? I can look at your phone? How many items are we getting? Today he knew I was going to Publix even though Earl does most of our food shopping. Yes I say food shopping. I’m old school. He likes to cut coupons. I like to save money but admittedly I am not that much of a coupon person. Publix has lots of “buy one get one free” offers, that’s more my style. The problem with coupons is keeping track of them, looking for that item, blah blah blah. The other issue can also be Bryan. At times I power shop to race against his behavior. If he has bad behavior I will buy just what I need to get out as fast as possible. I don’t need stares and I don’t need to hear him scream in the store. Why bring him you ask? Well there are times when you have to, like when no one else is at home, or when he needs to get out of the house and get distracted or when the other parent is so cuckoo it’s better to get Bryan away from that parent.
Today’s visit was stellar. Bryan did not ask to see DVDs, he did not ask for gum, he did not ask me how many items I needed. He had a little anxiety because school starts tomorrow after winter break. But I have told him he has been “wonderful” all of winter break and I think the positive vibe between us has sunk in. He did use my phone but he was appropriate, helpful, and patient. I looked through the pile of coupons Earl gave me and was able to find my items and take my time. I didn’t have that tension in my neck or tight jaw I often feel when I’m in the store with him. We were just a mom and her son the night before break is over stocking up on supplies. Better than a Broadway show or 4 star restaurant. He reminded me I need to make his lunch tonight. Not my favorite chore but one I will never complain about. I try to remind myself if I start to dread it how many people wish they had kids who do not or have lost kids or have sick kids that would do anything to pack a kids lunch. A simple chore, but the essence of every day life. Although I have to go back to work tomorrow and I grapple with my own sunday night itis, I am warmed by the maturity and progress of soon to be Bar Mitzvah boy!

Checking my resolve

I am not big on New Year’s resolutions because I make resolutions all year long. Every day to me is an opportunity to improve on something, to start new, to dig deep, to get moving. I am always resolving to lose weight, eat healthier, exercise more, like everyone else. That is the first layer. Then I have my next layer of resolutions. I will be a better mother; more patient, more fun, more of the kind of mom that laughs off extra laundry and plays board games or wii all night. Ha! The kind of mom that creates fun speech games for her special needs child and thinks of creative ways to get her kids to eat veggies. Ok I’m full of shit, but I do mean, intend or resolve to do those things. I always intend to be a better wife too. Remember those commercials… I can bring home the bacon, fry them up in the pan…. and wife is in some hot outfit? And by hot I don’t mean an old grateful dead t-shirt and the sweats you bought right after you gave birth because they were nice and loose. Husbands yearn for the garters and thongs and we just drive home from work and see sweats…but I do resolve to do better!!!
I have not worked since December 21. I was worried that this time off would be bad. I know that sounds weird but Bryan plus no schedule usually equals disaster. Surprisingly enough, he has been “wonderful”. He has had his moments of anxiety, but he too has resolved to do better. Bryan, like most of us, will do better when he is doing better. He is destroyed when he thinks you are upset with him. But, because I keep telling him how wonderful he is, he is behaving wonderfully!! Am I shrink or what? Actually it’s a mix of positive reinforcement, maturity, excitement for his Bar Mitzvah and a break from school. Any other reason is all a crap shoot. Any way or any how it’s happening, I’m all good with it.The last day of 2012 I woke up with a migraine. The first day of 2013 I woke up with a migraine. I took my meds and got on with my days. I read nothing into this except that modern medicine rocks.