Sunday, January 20, 2013

First Hockey Game

We took the boys to their first hockey game last night . . . it was Scout Night, which is how Thane found out about it. We were willing to give it a go since he won tickets to a Sea Dogs baseball game last year and he really had fun. He is so charming at games as he gets totally into it to the point of exhausting himself quickly.

It was interesting watching the monitors as they scanned fans. There was a little boy who was jumping up and flapping and my husband and I automatically thought he was probably autistic like Thane. Thane jumps in his chair, flaps, talks non-stop, etc., at games. Luckily we were seated among understanding folks.

Braeden hid from my efforts to take pictures, but I actually used my phone's reverse camera and took a picture of myself and Thane. I think the background is just perfect for us, and I am kind of surprised how much I think he and I look alike here. I usually think of Braeden and I as looking more similar than Thane and I, but Thane definitely looks like my child here.

It was fun, and I am really proud of Thane for being open to new things, and for Braeden for wanting to make it a family event . . . knowing it was a long drive, and that we likely wouldn't stay the whole game. Braeden was rather bothered by the fighting in the game. I have to agree with him that it is a bit odd having "Scout Night" and lots of kids there to watch adults brawling on the ice. All these people were jumping up and cheering, while my kids didn't like it.

Saturday, January 19, 2013

OCD Organizing and Cleaning

We’ll see how long I can actually stick with keeping updated here. Some of it may not be too exciting, but there is something nice about being able to look at posts and reflect.

Thane is pretty cute. How many 9-year-old boys would get jump up-and-down, flap-happy about having their closet organized? “You organized my closet! And added labels! And teddy bears!” I have to say it is making life so easy to have this closet so organized.

My OCD reared its head when I realized I didn’t have enough blue and green fabric drawers. I had to head out to target the same day to get more, and then it took me about a week to get back to the closet. I am posting a first-round organization picture, but now it is perfectly green-blue checkerboard, all blue cubes have black-rimmed labels and green cubes have white rimmed.

Then we moved to the play side of the room. Thane’s room is long, with a staircase just off center. Under 4 skylights is his futon, bean bag, TV, and two sets of nine cubes. Today Dave and I did some sorting and labeling of the drawers over there. We also started organizing the “toy closet” (his room has two closets and he certainly doesn’t need two for his clothing), and then the nightmare task of DVDs. I am surprised at how often he puts DVDs in the wrong case or doesn’t put them away at all.

Every once in awhile I hear a little tidbit on the news or a talk show that makes me think “Aha! That’ll work for us.” For years we have discussed having trouble knowing where to start. Sending Braeden up to clean his room and having him instantly ask for help because he doesn’t know what to do with his stuff. There was someone on CNN showing a family how to organize her children’s bedroom. Not only did she do some of the stuff we had already started with the labeling, but she said to make a specific plan. For example:

1. Pick up books and put away
2. Pick up toys and put away
3. Pick up laundry and put in hamper

I think I am going to do something just like that for Thane. We will help him clean up his room, but I will also make a visual schedule and put things in order. I may even divide it into daily tasks and weekly tasks because I have noticed that if everything is in order, he is much more likely to throw out his trash, put away his books, etc. In other words, there will be less to clean up on a daily or weekly basis because more of it will be done as on-going maintenance.

In Thane’s case, I think nightly he would need to make sure his dirty clothes go in the hamper, throw out any trash, and take any cups down to the kitchen.
Weekly all the DVDs would need to be put away, books put away, toys put away. everything tidied up and vacuumed. He will also need to take anything that has fluttered down to the living room back up to his bedroom.

It’s worth a try. And then perhaps we can set a similar cycle with Braeden so that we don’t find a whole trash bag full of Diet Coke bottles in his room.

Wednesday, January 16, 2013

New York, New York

Traveling is not really a high priority for me . . . I saw all the things around the holidays about experiential gifts, such as a tickets to a show, actually being a better gift than a monetary item. For myself, I seem to like thinks that are a little bit of both, such as getting that snowmobile I have posted about it!

I often feel bad for Braeden because we don't go much of anywhere with Thane. I mean, we are going to a hockey game on Saturday, but it has been a few years since we have even traveled to Rhode Island to visit family. It is just too hard with a very allergic, gluten-free, ritualistic child on the spectrum.

Braeden has gotten to go on a few trips with school, such as going to Gettysburg, or going whitewater rafting. I know he would like to go to Europe, but he agrees that going someplace with a different language, and most likely the pressure on the airplane, would be too hard on his little brother.

In spring, Braeden is making a trip to New York City and staying in Times Square. He's going for a few days to take part in a Broadway Student Summit where he will take classes, see a show and meet the cast.

I was worried he wouldn't take the opportunity. I tried not to push, but sometimes you have to step a bit out of your comfort zone when the opportunity arises and just seize it. I am excited that he decided to do it. I think it should be wonderful . . . as long as he can behave himself. He is going with a small group of theatre kids. I am not sure how many as only three have committed so far, but as many as three more may go. They are probably all familiar enough with each other to bicker like siblings, going with one of their directors and a parent of one of the teens.

It all seems fun to me. I grew up in Brooklyn, which is part of New York City, even if people refer to Manhattan as "The City." They will fit in a few sites and fun restaurants, and maybe a second Broadway show. I think it is the type of thing Braeden will always remember.

Monday, January 14, 2013


I have decided that I am not good at this thing called friendship. What’s worse, is that I feel like I am at a point where I don’t really want to try anymore.

In my local relationships, I am really tired of feeling like I am the one who does all the work. If I didn’t call, there would be no calls. If I didn’t stop by, there would be no visits. Basically I am the “friend” people call when they need something, otherwise I don’t exist. Heaven forbid that I actually want or need support as then these so-called friends appear to vanish. There are always excuses, but after awhile they don’t wash anymore.

There is no reason to not even give a simple reply to a text. Since I am not married to my phone, I don’t expect instant replies. In fact, I am really good at leaving my cell phone places, which is why I have two! One of them is just for my car so that when I am doing my driving rounds, I have a phone if I need it. I feel like I drive too much to risk not having a phone with me. My other one may or may not make it into my pocket. Actually my Facebook friends would giggle about this because I lost that stupid phone in my bra not long ago. I actually searched around for it before leaving the house. Dave looked a bit too. I gave up figuring I have the other one in the car . . . only to realize a few hours later that it was in my sports bra. I do that a lot if I don’t have pockets, but it was an odd choice since I was wearing jeans. I think I must have stuck it there before I fully got dressed.

Anyway, all that mumbo jumbo is partly to say that I see where I am not the easiest person to reach. If I don’t recognize your number, I won’t answer. If I am at home, I prefer people to call the “land line” as that I can usually find. If I am driving, call my car because it is hands free. If I am out but not in my car, call the cell phone that I misplace daily as I am just not a phone carrier. But if you text me, I will generally answer within 24 hours if it is something that should have a reply. If you email me, I answer quickly if it is simple, maybe a few days if I really have to think and get emotional about it (I have run support listservs for over 15 years and I try to be careful about how I reply to emotional discussions). If you call me, I generally call back if there is something I need to answer or if there is concern – though timing is challenging because of the kids. I am a bit obsessive, so sometimes if I am in the middle of something I won’t even answer the phone if my husband calls – but he knows to leave a message because I will pick up if he actually needs me then.

One of the things my father used to say is that he didn’t get hurt by people because he didn’t have expectations. On some level it doesn’t make sense to me, on emotional level, but logically it makes perfect sense. If I never expected someone to return my friendship, I wouldn’t be hurt or feel let down by people. But would I put as much effort in? Would I constantly offer support? Would I loan my stuff? I think I would really have to be stupid to do all of that and not have expectations. But, maybe my family was right about me being the stupid one because it has to be kind of dumb to keep reaching out to people who seek me only when they want something. It seems like it has been this way since I was a kid and stole money from my mother’s wallet so I could buy candy so kids would hang out with me. It seems like people are perfectly nice and friendly when we are together or when they want something from me, but when I go through a spell of wanting to talk about stuff, like the post I made about my father’s death, people vanish. I know people don’t do grief well, but if I wanted to celebrate the snowmobile, they wouldn’t be there either . . . unless they wanted a ride.

I also if I have an unrealistic expectation of what adult friendships should be. Maybe I do. All I really know is that it just doesn’t feel worth the effort. If I didn’t invest in people, maybe I wouldn’t care so much that most people don’t invest much in me.

Saturday, January 12, 2013


We were a little slow getting to the snowmobile – didn’t want to start out at night, so we waited until Saturday, 1/5. The older males went downhill, turned, and dumped the thing over immediately. Braeden was NOT amused by that, especially since he wasn’t really dressed for it. He did get back on it awhile later and decided he really likes snowmobiling, especially if he gets to drive.

Thane was surprisingly willing to go for a ride too, and we could hear him happily calling out “Whoa” and asking Dave to keep going. It was really cute. All-in-all a good family day.

Monday, January 07, 2013


This probably isn’t the best use of my time today, but here it goes anyway . . .
My estranged father passed away about 6 weeks ago. We had not seen or spoken to each other since 1999 when my family decided to emotionally attack me and my son my Braeden. I had gone through life being the ugly, fat and stupid one in their eyes (and words) and they had decided that because Braeden wasn’t social with them that he must be autistic. My father went so far as to say “but he is still okay to be around” – this from the man who picked him up as a newborn and held him at arms length away from his body.

I was devastated, but since the suggestion came from my brother, a psychologist specializing in early autism, I had to have Braeden tested. Every single person we saw for evaluation said that whoever suggested he may be autistic had no clue what they were talking about it. When we explained it was a Ph.D. who writes chapters of books on autism, they spent a lot of extra time showing us all the ways that Braeden was clearly not on the spectrum. The biggest issues were that as a toddler – he was 15 months old – he used to like run his hand over my braided hair repeatedly and he was a toe-walker. Toe-walking runs in Dave’s family. I have to say it was kind of charming because Braeden was an extremely graceful small child who could toe walk across a balance beam at gymnastics with sheer perfection.

Anyway, I had told my family prior to our visit that while I had put up with the verbal abuse and degrading my whole life because they are my family, there was no way I would allow them to do the same to my child – I would protect him a way that no one ever protected me. After they sat me down to tell me Braeden was autistic, we grabbed him, me in tears, and left. That was that. We saw our family doctor immediately and she said, about Braeden, “He just doesn’t like your brother! And neither do I!” I was in tears and my little 15-month-old was comforting me, very clearly concerned about how mom was feeling.

The only communication I received my father after that date was the letter saying Braeden was still okay to be around, and he may have also been the one who called a year later to tell me my sister was in the hospital (but I can’t remember whether it was him or my mother’s cousin who did that).

I was a much healthier and happier person without this constant negative barrage in my life, but it also hurt because this is not what family should be like. I don’t know how many conversations I have had with Braeden, now 14, about how I never want him to walk out of my life. He did, I would still call on his birthday, or send a card, or somehow find a way to communicate with him that no matter what I will always love him. There may be times when I may not like something he does, or perhaps I won’t agree, but I will always, always, always love him.

Thane came along 4 and a half years after the family divorce. He had issues since the say he was born – failure to thrive, sleeping 21 out of 24 hours, being a very unhappy little baby. We started questioning what was up with him well before our doctors did. He would learn a word, but then if he learned a new one it would replace the previous word. If you tried to get him to talk, he would cover his ears and turn away. He didn’t respond to his name. His speech therapist at two felt he had a childhood apraxia of speech. He was diagnosed with PDD-NOS at 2 years 8 month (in part because it takes a good six months to get an evaluation around here), including sensory integration disorder. At 5 years 5 months the diagnosis was refined to Asperger’s Disorder, though I have some minor conflicts with the diagnosis. I thought it was only for those without a speech delay, but Thane had a moderate- to severe- delay at that first evaluation, though currently has no speech delay (his skills are somewhat Swiss cheese, though, where he some fabulous skills and some issues with conversational and social speech). His most recent evaluation at 8 years 6 months has him with Asperger’s Syndrome, Anxiety Disorder-NOS (some perfectionism and OCD), and, of course, he still has sensory integration disorder. Imagine what fun my family would have putting him down. I can see them all just running their fingers through his hair to make him scream.

My brother left me a message the day after Thanksgiving that my father had passed away that morning. I spoke to my brother very briefly, told him I was sorry for his loss, but felt that if there were services that I wouldn’t be attending as I would cause more stress than anything else. I know my father’s wife would not want to see me, and I feel no desire to make things any more difficult on anyone. I believe funerals and such are for the living, not really for the person who passed.

I have had some condolence letters and flowers sent to me – the flowers from my husband’s family, who have always accepted all of us, quirks and all. Some of the cards I still haven’t opened because my sense is that most people don’t really get what my feelings are. When I was little, my mother really seemed to not like me. She got sick when I was about 10 years old and wasn’t fully diagnosed until I was 13. She had a brain tumor and was operated on when I was 13. I remember when she was sick having her tell me that she didn’t give birth to me, that I was only my fathers. I actually searched her dresser looking for proof – hoping for proof that I wasn’t hers – but I found the hospital bracelet from when I was born. My sister found me crying on the floor in the bedroom because I found out mom was really my mom and I had truly hoped she wasn’t – it would explain why she didn’t like me.

I remember getting sent to a psychologist at boarding school because I said something about my mother being nicer to me after her illness. I was told I was horrible for saying that. Perhaps I was, but she was nicer to me and I did more to take care of her than my siblings did. I think I was searching for a way to get her to love me. I remember when she died a bit part of the pain was realizing I really would never know that my mother loved me.

Move forward 15+ years now and now we have my father passing away. Same thing. He is gone and there is no way to confirm that he actually loved me. His actions say no. I was told over the years that I could call him, etc., but phones work two ways. I haven’t moved in 25 years, nor changed my phone number in that time. He couldn’t have said the same thing. In fact, he moved to about an hour away from where I live and never said a thing, never tried to see us, never tried to see his grandsons, or anything. He may have felt that he was respecting my wishes, and I understand on some level . . . but as I have told Braeden, I would always find a way to wish him a happy birthday and let him know whether or not he wanted me in his life, I would love him forever. My conversations with Thane aren’t as deep – I just assure him that I will love him forever and he replies “I know!”

So why I am I writing this six weeks later? Because on Saturday I got a copy of the will and it all just reminded me that now both of my parents are gone and there is no chance to ever feel like either of them actually loved or cared about me. My husband, who has been with me now for 27+ years, pointed out that I was a misfit in my family – they just aren’t loving people, while I am. My ex sister-in-law told me once that they all looked down on me because I was common, where they think of themselves as aristocracy or something. My siblings think they had a great childhood traveling all over and I feel like I had a childhood of being dragged places. They went to ivy league schools and I went to the University if Maine.

More than anything, I hope my own children never decide to divorce me, and that they always know that I love them more than anything. We had a lot of trouble maintaining a pregnancy. I have told Braeden that he is my miracle. Why not? He is! He is definitely not autistic. He is smart, funny, and wonderful to watch on stage. And Thane is my very welcome surprise. And yes, some people may think he is less because he has autism, I will tell you he is definitely different not less. He is sweet, charming, quirky and totally lovable. His joy is so palpable it resonates through a room and everyone smiles with him. Too bad for you, my birth family, that you had to miss out on knowing them because you thrive on being superior and critical . . . they are worth far too much to me to allow you to treat them the way you treated me.