When you turn on the tv now, all you hear about are the upcoming primaries and New Year’s resolutions. It’s no wonder why I like to watch HGTV. Making a resolution to me is a set up for failure. It’s the same every year, lose weight, be more careful with money, have more patience. All it really means though is worrying about Bryan. Any small milestone triggers a reaction. What will happen to our beautiful, sweet, loving, smart boy? I read these articles about children with autism who grow up and have relationships or “come out of it” and it doesn’t make me hopeful. It makes me depressed. I know that is not the norm for these kids. I try so hard to be optimistic but I know we won’t be here forever and that makes me nervous too. Will he have a good life? Will he meet someone and have a relationship? Go to college, live on his own, drive a car, have a child? I can’t even mention this in front of Jason he gets so indignant about it. “I will take care of Bryan, he will live with me.” Oh the guilt, love, admiration and pride that declaration provokes. The floodgates are open and the rush of fears washes over me like a tidle wave. “there’s got to be a morning after…” I keep picturing myself hanging on to roof tiles while floating on the river of debris. Clearly I’ve watched too many documentaries of Japan. When I think about Bryan’s future I feel panic set in. I need to remember that everything with him is slow motion. When I talked to Earl about this he said “weren’t you just blogging about his progress?” Yes, but but but. The overprotective mommy instinct and the rational person thought process sometimes collide.
One more thing about New Year’s Eve before I move on to all my regular emotional stuff. I know this is random, but can someone please have Dick Clark stay home this year? It’s painful to watch him and he needs to just pass that damn baton and get over it. I am happy that he is doing well and recovering from a stroke or strokes but it just is not dignified, ok, got that out.
Last night I loaded HBO Go on my ipad. Wow that really rocks. The picture on the ipad is unreal, so clear. Jason decided he wanted to watch “The Tale of Despereaux.” I did not watch the whole thing but watched a part where Despereaux, a tiny little mouse with big ears, was having trouble in school. He does not cower and does not scurry like the other mice and the parents are very worried. Well that just pushed me over the edge. Every parent just wants their child to do what it is typical. When I teared up Jason, who really gets me, said, “Mommy why are you sad?” I told him that Despereaux reminds me of Bryan a little bit and he just said “come here and give me a hug.” I am sure when Jason grows up he will be telling someone, a shrink, friend, spouse that his mom was a nutcase. I guess that’s a Jewish boy’s legacy!! Not sure what will happen in 2012, will the world as we know it end as predicted? Will Bryan have a successful transition to middle school? Will I lose weight? Only time will tell. Happy New Year.
Ok, time to come clean. I like to go to my nice quiet office. I am not cut out to be a stay at home mom. I was home for a few days and although it was nice to have extra time with the boys, Bryan’s perseveration and anxiety can be tough to handle in large doses. He craves structure and these days were unstructured. So, I guess what I’m trying to say is, it’s not his fault that he is perseverating, he doesn’t know what’s coming next because we don’t either. Nevertheless, the days can be a challenge. He knows what is and isn’t happening, but has trouble reeling himself in. It pains us and him and overall it makes for a stressful experience. You would think then that we would have plans all the time for him, but let’s face it, that’s neither practical nor realistic. Some days you need to just have nothing to do or nothing scheduled. Sometimes you need to clean up around the house, or organize your things, or just do laundry and watch movies.
Yesterday was particularly rough in the morning, but I am trying to remind myself to focus on how far along he’s come, rather than the bad things that have occurred. In the morning, he really wanted to go to Target to get a Wii game. The boys each got two Target gift cards and wanted to go shopping. Every other Monday the greatest thing happens, we get our house cleaned, and I wanted to keep the boys out of the house at the time the cleaning ladies were coming, so timing was key. Bryan was struggling with the way I was putting him off. He started asking at 7am (which is very late for him), “what time do we go to Target?” but I kept stalling until I was fairly sure what time the cleaning ladies would arrive. At one point he was so frustrated that he pinched Jason and me and broke the skin on both of us. (this morning when I was showering I felt something burning my left hand only to realize i had these two cuts in my hand from where he pinched me.) Ok, so back to the progress. In past years if he got to the point where he was hurting us, this would’ve gone on for an hour or more, no exaggeration. He would hit, pinch, maybe bite, destroy things and scream. But, he is a more mature boy now and understands so much more. He has more control, he is more aware. He did hurt us, did carry on, but it was short-lived. I told him on several occasions that if he didn’t stop, we would not go to Target. For the most part, we do not make idle threats and he knows it. He lost it for a little while, but then, remarkably pulled it together. He took a few deep breaths with the assistance of his loving and empathetic little bro, and we went to Target. I think he is learning that we are trustworthy and always keep our promises. I think he has always known this in his heart, but the fact that he could convert the knowledge into practice was the accomplishment. We also had to wait a long time for the salesperson to unlock the Wii games at Target, but he was patient and calm. I am going to keep my glass half full for the day. Besides, today is a Daddy day and I’m going to work.
I joined a whole bunch of Jewish people today at the Festival Flea Market in Pompano. It is really the only shopping open on Xmas Day and you can seriously tell that these folks are “members of the tribe”. It is the epitome of shit shopping and is fun if you don’t really need anything. What is special there? Tye dyes, pickles, old make up, hair products, scarves, hair toys and crappy handbags. Gotta love it. Of course there is a food court, stocked with knishes and kosher dogs.
I met my Mom there this morning for the ritual. The only thing I really needed was shampoo and conditioner, the kind you can use when you have your hair chemically straightened, which I do. We walked up and down, with no purpose but to have a laugh. We stopped at the scarf lady and she had some cute stuff and we each picked out 2 scarves. Then my Mom treated me. Now if you know my folks, this is not a big surprise, they are beyond generous, but it was the fun of it. Everyone loves to be a kid and be treated. I really didn’t get Hanukkah presents this year so it was nice and fun. We also stopped at a place that sold Sugar Lips tanks, which are great, and again, my Mom treated me. It sounds silly but it really made my day. I know how much the boys love when they get a treat, and I swear it never gets old. It’s not the item, but the gesture. For me, at this point in my life, it’s the time. It is tough for me to get time alone with either of my folks and just have a laugh or relax. On Thursday I got out of work early and went to their house for an hour before I had to pick up the boys at speech therapy. My Dad is interested in getting an iphone and we spent about 30 mins going over mine and then my Mom showed me some jewelry and shoes she was going to wear to an upcoming wedding. Then I had this morning with my Mom at the Flea. These times create memories like little precious jewels you tuck away in a drawer and bring out when you need them.
We are now going to my Aunt’s house for a Hanukkah party. Seems funny to pack bathing suits for the kids, but hey, it’s Florida, and that’s what is appropriate. Bryan has a lot of anxiety about going. I made him an index card, (this is something we do to lessen anxiety, we write down what we are doing for the next 4 or 5 hours, including coming home) and he can take it out of his pocket as needed. We will be saying “look at your card” all day. Merry Christmas to all!
So driving to work this morning, I have off tomorrow and Monday, I am listening to the Grateful Dead channel on Sirius/XM. Love it. They were playing a concert from San Francisco, 12/30/83. When I turned it on, Bobby was rocking “the Women are Smarter” and man that is a great song if you are a woman. It’s righteous and raw, and I dig it. They segued ( an unusual segue for the Dead) into Terrapin. Jerry, so soulful, and he knew the words! That’s big for an 80s Jerry song. I just love how that song morphs from one soft ballad to a true musical treat. The song is a journey and just forces reflection. Today is a day of reflection. A friend of mine who was ill her whole life died on Tuesday and will be buried today. Her favorite Dead song was Scarlet Begonias. Listening to Terrapin and hearing “The story-teller makes no choice. Soon you will not hear his voice. His job is to shed light, and not to master.” So powerful and makes you feel like some stuff you are told, the rest you have to figure it out.
Last night our former sitter, Mara, came over and we had Hanukkah with her. The boys were so excited to see her and she generously brought them gifts she knew they would love, and they did. She is just a love! We had such a nice talk and although I didn’t want to sound preachy or old, I just wanted to emphasize to her that when you are young you need to really enjoy yourself. Go out, have fun, date, party, etc. We never know where life will bring us and although you can plan for the future, you need to live in the moment. Although I had a lot of fun as young person, I was always distracted by my future, would I find someone I love who will love me back, will I have a family. I was not good at watching things unfold. Ahh if I only listened to Terrapin more often.
So recently Earl and I went on an evening cruise on one of my company’s unbelievably over the top yachts. There is a new attorney in our office who just moved here from the NE. He was planning to go but his wife had to work so we invited him to drive down to the harbor with us. Well he got way more than he bargained for! He is young and they are only married a few years with no kids. Since I am the poster child for autism awareness at work, he asked about Bryan and could we give him an example of some of the behaviors he has that can be difficult or illustrative of his disability. Well I can assure after he got out of our car he will not be trying to have a kid any time soon. I joked that he was going to buy condoms on his way home. In reality it must be strange to hear what we talk about, like speaking Swedish or something. Autism is mysterious and scary and we really put it out there. One of the best things about writing this blog for me has been people telling me that I am giving them a glimpse of what it is like to have a child with autism and what Earl and I go through. Sometimes things that seem very mixed up can make you see what isn’t.
What the heck is going on this year? I know I live in Florida and it doesn’t snow or get cold, but we haven’t even had the traditional dip down to 50. It’s hot as hell and it makes the holidays just seem weird. Last night we watched and listened to the Adam Sandler Hanukkah song; both the Neil Diamond cartoon version and the original Adam Sandler version. Great stuff!! When I got to work today, I had to do what I do every year as the token Hebrew in my department, tell the story of Hanukkah and explain that my kids are not traumatized that they do not have Santa or a tree in their life. Every year, what do you eat, what do you do with the menorah, come on people, get a clue. I saw a bunch of postings on Facebook about Jackie Mason criticizing President Obama on his acknowledgment of Hanukkah. I have to admit, while I was happy that the President acknowledged the holiday, it did seem silly to me that they would have a Menorah on Dec 8 when the holiday hasn’t even started yet. I guess we should be grateful to be acknowledged. The messages were brutal against Jackie Mason, I’m always surprised how venomous people can get over such small stuff.
In any event, the boys are so pumped for Hanukkah. We are having some family over to celebrate tonight because our niece and two nephews will be going up to NY to see their Dad and celebrate the holidays with him. The only real damper on things has been winter break camp. It is so hard to be a working mom during the holidays. You want the kids to have a break and just chill out, but I have to work and they have no school. I am lucky that Earl works for himself and has flexibility to pick up the slack but it’s still tough. Each year is a challenge. A few years ago we were able to send them to our local town camp, and Bryan can hack it there. He usually will cling to a counselor and he loves their day trips. They don’t offer that camp any more for winter, just summer. Last year they went to separate places (Bryan went to a JCC camp for special needs kids) but that camp has a schedule that doesn’t coincide with our break, ugh ugh ugh. And the expense, Winter break can cost $800, happy holidays. So they are now going to the Parkland YMCA camp, very close by and should be fairly ok. Yesterday Jason told me the kids were laughing at Bryan and I felt like I might puke. I have tried to minimize their camp attendance, they only go until 2pm when my sitter picks them up and they are only going for 4 days. Oh how I hate to hear that he is being laughed at or teased; and Jason must feel so awkward too, you want to protect your brother but you want to fit in. Earl dropped them off and spoke to the counselor who was very nice and told him she had experience with kids with autism and would take care to make sure the kids were not laughing at him. Clearly a double xanax day for me, topped by an Earltini tonight. Earltini=citron vodka, pomegranate juice, chilled and served straight up in a martini glass with a squeeze of lemon. woo hoo. This scrumptious cocktail is named for the best bartender around who created them for me!!
I definitely subscribe to that statement, no news is good news. I believe human nature is to call and tell you something has happened, but if everything is going smoothly, you may just forget to let someone know. Why am I thinking about this today? Because I have not had any real blogging in me for the last week and I was wondering why. Writer’s block? I don’t think so because I’m not really a writer. I just write stuff when I feel it and I usually need some serious event, happy or sad to cause me to write. So here’s the thing, in my case, no news is good news. Bryan, while still yelling from time to time, etc. has been really great. His language is improving so much and for this brief time seems fairly calm. He and Jason have worked together twice, once at a speech therapy session and once at an Occupational therapy session. Both times the therapists remarked at how loving their relationship is and that Jason is a “special” child. Funny how when you say the typical child is special that connotation is positive, upbeat, a compliment. With respect to a “special needs” child, it seems negative, cautionary and mysterious. In any event, I am proud that they have such a bond.
Hanukah starts tomorrow night. The boys are excited to get presents. I get it but I really love lighting the candles. I love a Menorah and I must say I do love latkes too. I love that Bryan keeps asking for a Robots Playstation Game and a Fat Albert DVD and we’ve had those puppies wrapped for weeks. He doesn’t ask for much so to get him what he really wants is very satisfying. Bryan and I spent a lot of time alone yesterday. We went to speech together and Jason spent the day at my sister-in-law’s house. She and our nephew taught Jason how to ride a bike and when he got home he was over the moon.
Bryan and I hold hands in the car sometimes. I love to touch his soft skin and give him lots of kisses. I like to put my hand through the back of his thick hair and just feel how bushy it is. He lets me hold his hand in the car, our fingers intertwined, it makes me feel connected to him and I believe it lets him know I love him. Around 5 Earl went to Publix, this can be a 2 hour event, he is careful and tries to get us great deals. Bryan and I went on the trampoline together. We jumped, we laughed and we had great eye contact. That was my Hanukah present. Happy Holidays.
Payback’s a bitch; I suffered with horrible anxiety as a child. I was always having diarrhea because of some test, some social situation, some self-induced pressure. I have worked very very hard to shed a lot of that. When I feel anxiety creeping up I remind myself of very tough situations I have been in over the years and that I was able to survive them, and succeed. I am also very grateful to Earl because he really doesn’t experience anxiety, or not openly as I have, and can be very calming. I always felt like the world was going to end for me. He always reminds me that nothing that can be fixed is catastrophic. Clearly, dealing with Bryan and his issues has also grounded me and given me perspective.
On Sunday my cousin called to see if Jason wanted to go to the Miami Dolphins game with him and his wife and two kids. Such a warm and loving invitation. All I could think of was “of course”, I’ll spring him out of Hebrew School and take him over there. This cousin, my oldest, is extremely family oriented and loving. He was truly excited to spend the day with Jason and get to know him better. I think with all of my cousins we feel this great desire to get to know each other’s kids. I love having any one of their kids alone and feel such a connection to them. We all love to tell each other’s kids good stories about their parents growing up and the kids are like little sponges for these small bites of history. So I go and pick up Jason from Hebrew School. He was excited to get called to the office to get out early. (if this were me as a kid I would be worried, but he’s half Earl’s kid and he was great). So I told him the plans. He was thrilled, excited, like any young boy invited to a great day of fun. Then the mini me crept in… “Mommy, how long is the car ride? Mommy, what time will I be home? Mommy, I don’t want to go… ) Ugh, anxiety, he really does not know these kids as well as some of the others and he is only 9. If this were me at his age I would’ve been at a gas station in the bathroom already and had a complete anxiety attack. But, since he is my mini me, I think I was equipped to help him. I reminded him he had his phone and could call me as much as he wanted, I gave him some cash to buy a souvenir(I knew that would do it) and let him know that he can trust me. I would never send him anywhere that I thought wouldn’t be fun or that he couldn’t handle. When we got there he was greeted with such enthusiasm and pure joy he seemed to melt a little. Then he went on their computer and started to calm down. He had a great time. He bought a foam finger and a key chain for his brother. Ok some of my genes are good.