imagesCAVEMHKMDoes your kid play Minecraft? What the heck is that about. Jason is obsessed with it, like most kids his age and it really makes me feel old. He likes for me to play with him but I seriously do not get it. He will be on his desktop computer in his room, that alone is old, and has a phone or his mini ipad next to him where he is other talking on the phone to a friend while playing or using face time with a friend to play. Last week he freaked out because he was playing with a kid who stole his “diamond sword” and some of the other stuff he had in Minecraft. I tried to assist but there was literally no easy way to do this. We asked the kid through the game to give back the stuff. We “reported the theft” to the server administrator but without a screen shot of what Jason had prior to the theft we had no credibility. I felt sooo old, unsure of how to assist. We called the kid a few times through face time but he did not answer. I wrote on the game that I was Jason’s dad (deep voice, more threatening) and if he didn’t give back his stuff, I would call his parents. What a load of crap, the kid is in cyberspace. Eventually he did give the stuff back but not before 24 hours and there was tons of Minecraft hysteria. Jason wants for me to play Minecraft with him. He sets me up on my iPad and he is on his mini iPad. I do not get it. No matter what I do, I don’t get it. He always has to change my view and come get me in the game. I always get killed, and then the next screen says, Respawn? Yikes, what the heck is that? I feel like Sigourney Weaver is going to show up at any time.minecraft
Jason is completely frustrated with us. He had a melt down on Sunday night unlike I could have ever imagined from this boy. After more than an hour of some of the worst behavior, he finally softened up and in true Jason fashion started to talk. He basically told me for almost 30 minutes how neglected he feels. The biggest challenge of course is trying to deal fairly between him and Bryan. I had once blogged about this before, the difference between equality and fairness. You see Bryan likes to do some things that we don’t like, but they are hard to police. Bryan likes to watch what we call baby shows on his iPad. He likes to watch Blues Clues, Oswald and Sesame Street. Every now and then I hear Thomas music too. You see these are soothing for him, familiar, like old friends, so on the one hand, what is the harm? On the other hand these are baby shows, not for a teenager. They deal with juvenile topics, juvenile language and no opportunity to stretch his language at all. A dilemma for us, allow him to self soothe or force him into the teenage realm. Earl and I aren’t always in agreement on this too which also makes the ban on baby shows tough. I feel on occasion it’s ok but he feels that he should not watch these at all. Consequently the enforcement of the ban has been inconsistent, leaving Jason frustrated due to the strict enforcement of rules for him. Sometimes it’s just easier to give in to Bryan. There- I said it, I know it’s wrong and unfair to Jason and bad. But at times after working all day, dealing with so many pressures, if Bryan is content to sit with his iPad and watch a show, I’m not all that upset about. How crappy of me, what a cop out.
So now I am working on the rebuilding of my relationship with Jason. I never really thought he needed a sibling group, but maybe he does. He is at that tween stage and perhaps he needs the recognition of being a great brother to Bryan rather than feeling as if he is the losing half of a duo. Another thing to investigate but clearly something worth doing. Another summer project…

Bumping up and down in my little red wagon

Such a weird existence. Not sure what is going on with me but I’ve been really depressed. The kind of depressed where you can’t get things done. That is not me. I have been staring at camp paperwork hoping it will complete itself. I have been doing triage at work. I am not a triage kind of person. I am a more of a doomsday prepper. No I don’t stockpile water but I do stockpile camp labels and I’m way behind. I think I had post Bar Mitzvah traumatic stress syndrome or something, but I’m really off kilter. I wasn’t feeling well for a while but I’m starting to feel better so I’ll try to blame it on that. I need a good kick in the ass and get moving. These kids trunks won’t pack themselves and the more I put things off the worse it will be. I am good under pressure, but who needs more pressure, right? The other piece to this is that Bryan has had a great year at school. I have been spoiled. No issues, good grades, but I’ve coasted a bit; enjoyed it a bit; not questioned things too much. That is wrong and somewhere in the back of my mind I know that will catch up with me. Autism requires foresight and planning and I’ve been mentally off duty.
Each year everyone asks us what we are going to do while the boys are away at sleepaway camp. Jason goes for 6 weeks, but he may stay for 9 this year and Bryan goes for 7. They go to separate camps and they both have had very successful summers.For Bryan, the mention of camp increases his anxiety greatly because it is a long time for him to be away from everything and everyone he loves while the demands on him are tough. He can’t just watch tv, play video games and eat whenever he wants. We are not complete pushovers (ok I am way more of a pushover than Earl-I admit it) but it’s tough when you think of how difficult it is for him to do many things and I know camp forces him out of his comfort zone. But that is of course why we send him. As we anticipate them going away, I have these visions of cleaning the house, getting rid of a lot of clutter, going through our playroom and the boys rooms. I do think about having fun and relaxing, but I’m goal oriented and it’s my nature to want to accomplish things. Last summer we went through all of our hard copy photos and organized them and started planning Bryan’s Bar Mitzvah. Most people tell us, oh you should go away, take a trip,etc. With spending money on the Bar Mitzvah and camp, we will be lucky to go out for pizza!!! To me, just the quiet, the calm of our own home, with our puppies and our cat will be vacation enough.
I took Bryan on a playdate recently. His friend goes to a different middle school but they were in the same class for a few years before. I really love the parents, they are also a Jewish family but they are from South America. Bryan’s friend and his mom came to the Bar Mitzvah. For the 2.5 hours I was there with Bryan I sat with the parents and talked. This was the first time the boys actually played together, not just in the same room or in the same pool. We really didn’t even know they were there, and that was huge. It reminded me how important playdates for him are and how much further he has come in his socialization. The parents and I were sharing some of our fears as the boys get older. Will the boys ever live on their own? Will they ever drive a car? College? Have a family? We talked about the special bond we as parents of special needs kids have with each other and how most people do not “get it”. It’s true, you can’t import experience to people, so they can only get one viewpoint. I mean you can see a dress on a hanger but until you put it on and see how it goes with the shoes, do you know if it will really fit? Autism is like that. You have no idea what it feels like until you “try it on”. We are in a secret society filled with angst and love and fears and triumphs all rolled into one. I can spot a kid on the spectrum a mile away and the look a particular person gives me when they see Bryan I know immediately if they are “one of us” parents or an outsider. A little twinkle in someone’s eye is all I need to figure it out. I can also take someone down with a dirty look if you look at my kid with a menacing glance. The mother cub comes out and I have had my share of encounters with some less than accepting people. I am sleep deprived, intolerant, and I’m from NY. Don’t mess with me!! I have also witnessed exceptional grace and kindness. One time about two years ago the boys were getting haircuts. Bryan was not behaving too well so I decided to take him to another store, which happened to be Target, in the same shopping center while Earl stayed with Jason. On the short walk over he pinched me and hit me several times. I was trying to get him to calm down but really couldn’t. A lady was watching us and I could see she was sort of staring like “what the heck?” I ignored her and went into the store with him to try and get a few things and distract him. He was screaming and crying and hitting and pinching. I was trying to stay calm and keep him calm. This woman was still watching but I was not aware of her. She walked over to me and said “I see you are having a tough time, can I just give you a hug.” It was one of the kindest acts. I accepted a gentle hug but it triggered some tears. She kept saying, “are you ok?” and I said, “yes he doesn’t mean to hurt me, he loves me, he just can’t help it.” I think I needed to hear myself say that too.
I always need to remind myself it’s okay to take a break from chasing down every autism thing and just let him go along with the ride too.

red wagon

What Does a Yellow Light Mean?

taxiI was a big Taxi fan. If you don’t know what that is, yikes. Favorite bit of all time was when they were taking Jim Ignatowski,  brilliantly played by Christopher Lloyd, for his driving test. Anyway, Ignatowski is taking his written exam and he gets to the part where the question is “what does a yellow light mean?” and he leans over to cheat and asks Jeff Conaway(Bobby) for the answer. Poor Jeff Conaway, guy just couldn’t keep it together. Jeff whispers “slow down”. So then Ignatowski, says, “Whaaaat dooooeeesss a yeeellllloooowwww liiigghhhht meaaan?” and this goes on about 3 times, each time slower and slower. It is so hilarious.  If I am driving and Bryan says the light is yellow, slow down, I can think of nothing else! The push and pull of slowing down and speeding up is crazy with kids on the spectrum. When they are small and they do not function like typical kids it is not really all that noticeable to the outside world. If your kid is 3 or 4 and he doesn’t speak appropriately or he still wears a diaper no one really thinks too much. At that point you are in such a rush to have them catch up. You will hire just about anyone and everyone to get them to be “typical”. You think, if I just try this therapy or do this thing, it will sort of go away. You know in your head this is not logical and everyone tells you autism doesn’t go away, except that idiot Jenny McCarthy who said her son recovered from autism. Her son, in my opinion, never had autism. He probably had some sort of seizure disorder. To go on TV and act like you, a dopey playboy playmate and MTV hostess cured autism is fairly irresponsible. She is funny and irreverent but that’s where it ends. Lots of kids do lose their diagnosis, which I think is different from being cured, if they get a lot of ABA therapy when they are younger. Kind of goes against the idea that  you can’t buy your way out but for the most part these kids aren’t cured but rather they are trained how to learn differently.

Now that Bryan is a teenager I am in a rush for him to slow down. It is way more noticeable now that he is not typical when we go places. He does not speak like a typical teenager and he can be awkward.  Now I have to remind him to wash well in certain areas, and to stop touching himself. Ugh!! I am sure if you have a daughter having to deal with them and their periods is not fun, but having a 13 year old son with his hands down his pants all of the time is certainly raising awareness. Bulging shorts and giggling Bryan is definitely a test for me. “Talk to your father” I tell him, “he has that equipment, not me”. Puberty with a typical kid can be formidable but with kids on the spectrum, trying to get them to understand what is going on with their bodies and what is socially appropriate is challenging to say the least. Time for some new and exciting social stories. If nothing else the pictures ought to be interesting. Bryan does like girls though and pretty ones. We were at our friend’s house on Saturday and he told my friend’s sister in law, “you’re pretty.” He also was interested in going to the school dance on Friday night. So we begin a new chapter in our journey. We should get some fascinating reports from sleepaway camp. It is a coed camp and they deal with socialization issues and puberty. Just another good reason for sending him and allowing him to experience all that life has to offer. Often kids have their first “experiences” at sleepaway camp. OMG.

Jason is not much better. Right now he is “unplugged” since he has been punished for lying and without the comfort of minecraft he has been watching too many ‘tween shows that are all about dating and feelings. When he asks me things  I feel like saying, “just go google it” like they do with everything else. He asks me little questions here and there about sex. He asks me about condoms and tells me about the sex ed that they had at school. Last week he wanted to know the first time I ever french kissed someone. Is it wrong to say I don’t remember back that far? He asks me, how do I get a girlfriend? How do I know if a girl likes me? He told me only boys who play sports and have good tans get girlfriends. You can’t make this stuff up.