Bryan is now at a point where you can ask questions and get some real answers. I know that sounds nuts because he is 13 1/2 years old but that’s autism for you. When he was little if you asked him a question, he would repeat the question, which is called echolalia. People told us not to be too worried about this because, like most things, there is good news and bad news about this. Bad news, he’s not answering the question, he’s just repeating it. Good news, he knows a response is required. At the point we were told this information any good news felt like the brass ring so we latched onto it. As time went on, not so brassy that ring, you know? Over time he stopped repeating the question, but didn’t give a real answer. SOOOOOO frustrating. It’s all in there, you can tell from how he behaves, what he does, and what he wants. But, the exchange, the conversation, it’s that thing that is always just beyond our reach. Having a conversation with your child is one of the greatest gifts, the gems they come up with are truly “priceless”. When Bryan does have a 2 or 3 sentence exchange I am often in my head afterward, smiling in my heart that progress has been made. Such a small thing, but enormous at the same time. It’s funny about questions, some are easier to answer than others. He seems to be able to come up with an answer for the who or the where, but the why and how, well those are the really difficult ones. Anything that requires an inference or reasoning linked to language seems to get jumbled somewhere between what he knows and what he says. He often speaks in present tense even though he knows something already happened. As I have mentioned in the last blog, he is struggling with teenage and puberty issues. He is really saying inappropriate things and misbehaving. What’s great about this is it’s typical behavior, what’s bad about it is typical teenage behavior. He even is eating like a teenager. The boy absolutely loves to eat. He is an eating machine from the minute he wakes up until bed. He tries to sneak food when we are not looking and is always asking for more. He lost weight at camp and grew taller so he looks great. He will gain the weight back with ease because he seriously is nonstop. Like most autism “things” it’s ironic since so many kids with autism have food issues, either related to sensory issues or to digestive issues. Fortunately for him and us, he has neither. He is fairly open to trying new foods, and really likes a lot of varied things for a kid. At his age I ate hamburgers or hamburgers. So last night I was putting him to bed and I got under the covers with him like I do most nights. I don’t stay with him more than about 10 minutes, but I like to have this closure with him at the end of the day, just to make sure he feels connected to me. I said to him, “what are you going to dream about?”. Sometimes I ask real questions and sometimes I ask questions to see if he understands what I’m asking. This question was both of those things. At first he gave his usual answer for something he doesn’t want to answer which was “Shrek”. He often says things like “Shrek” or “Dora” or something childish when he doesn’t want to answer, doesn’t know the answer or doesn’t want to try. I do not accept such an answer. So I asked him again, what are you going to dream about? He said, “I dream about Annie’s Pizza”. Annie’s Pizza is our favorite local Pizza place and we order from there at least once a week. I laughed so hard, some combination of the craziness of this response, the candor and the Bryan-ness of it. Love it!! Tonight I asked him, “what are you going to dream about” and he said “food”. Sorry Annie’s!!
So here’s the thing, puberty sucks. Bryan has been showing signs of puberty for a long time so it’s not as if any of this is new or shocking, but I guess since he can communicate better and because he is more aware, we were able to coast just a bit. I know saying puberty sucks is not a revelation to anyone with a teenager but there are unexpected things coming from Bryan. I have to say, for the first time in a long time, I’m really not sure how to properly address these things. He says a lot of things now to be provocative, to get our attention, or just because he can. I think I was romanticizing him in my head and his behavior while he was gone for the summer, that he might come back more in control and more articulate and more forthcoming with language. That is an autism rookie mistake and I am learning my lesson. I always need to remind myself, hey Jane you dumb shit, he still has autism. Damn it sucks.He is also overly emotional at times. There are a whole bunch of things that he is saying that are making us cookoo for cocoa puffs. For example, and these are direct quotes:
- I don’t say fuck.
- Casey is dying, it’s funny. (Casey was our 14 year old cat we had to put down in June).
- Blue Clues are for babies.
- You’re mad at me. It’s funny.
- Son of a bitch.
- Show me your mad face, happy face, frustrated face, etc. (this all stems from Snow White and the 7 dwarfs).
While Earl and I curse at times, we try to let the boys know that they shouldn’t or when it is or is not allowed. When Bryan does this he starts this inappropriate laughing and can’t get out of his own way. It is maddening. Another thing that is driving us nuts is that he likes to watch what we call “baby shows”. These include the Wiggles, Blues Clues, and Barney. I didn’t like these when he was little and I sure as hell don’t want to hear them now. I suppose there are two schools of thought with respect to watching these shows. On the one hand, what’s the harm? They are innocent and soothing. On the other hand he is 13.5 years old and that is waaaaay inappropriate from a language, learning, peer interaction level. Earl and I are in the latter camp so when we tell him we don’t watch baby shows, he says “the Wiggles are for babies.” “I don’t watch the Wiggles” and again with the hysterical laughter. Now all of this, I am sure you are thinking, is not a big deal. But somehow it is because he says these things 1000x per day and his day starts somewhere between 4 and 5 am. It sucks that at this time of the morning (I use the term “morning” loosely) screaming,, “hi mom, I love you” . This alone can make you go insane. The juxtaposition between something as sweet as I love you from your kid, when so many kids are nonverbal, set against the fact that he is screaming this at 5 am is unreal. Whose idea of a life is this? Geez!! And don’t tell me, “can’t he just….. stay in his room, read a book, watch tv, make something to eat?” Yes he can, right after he wakes us up. I always think he is going to start sleeping later but he never does. I thought teenagers were supposed to sleep until 11am every day and you had to drag them out of bed for school? The only ones dragging around here are Earl and me. I don’t know if it’s because I’m getting older or because it was a quiet summer but I am seriously exhausted all of the time now. So while we don’t have a lot of the bad behaviors we had before, we had new fun and exciting ones to deal with and they are challenging.
I love that righteous feeling of cranking the Beastie Boys in my car on the way to work. The lyrics are “brilliant”; a mix of pop culture, puns, and almost rhyming words that always make me laugh. Each time I listen to a song I catch a little more and realize just how clever those guys were. There voices are so distinct and I’m sure they are forever saddened by the passing of Adam Yauch at such a young age.
This has been a very weird summer, I had a big birthday and that somehow forces a temperature gauge on where your life is and where you want it to go. Having the kids away at this time of reflection definitely skewed the landscape but now that they are back and starting school, I plan to look to them as my yardstick.
Jason has started 5th grade and will be turning 11 next month. He is on the Safety Patrol at school and is planning to run for Student Council President. He is also going to be a Parkland Sports Buddy for the first time this year. He will volunteer his time on Saturdays to pair up with a special needs kid, not his brother, to guide them in playing Flag Football. He had to be at least 10 to do this, so this is the first year he’s really been eligible to sign up. When I asked him if he wanted to be a buddy, he said “of course”. I’m very proud of that, he likes to be a helper so I’m confident he will embrace it well. I told him he needed to go early on Saturday for training. He said “training?, I’m like a buddy every day to Bryan”. Ha!!! He has a great sense of confidence now as a result of camp and the relationships he formed there. Prior to camp departure it seemed he really needed a break from Bryan and I think we were right about that. He needed to “spread his wings” a bit and develop some deeper friendships. One thing about Jason, he literally does not have one drop of self-consciousness about Bryan. Literally, none! A friend of his from camp that lives in NJ came down with his sister after camp to visit their grandfather. The grandfather became ill and the kids came and slept over night. The sister is Bryan’s age and Jason’s friend and bunkmate is his age. Bryan displayed his typical self, sometimes yelling, often impatient, and definitely perseverating. Bryan and the other kids ate dinner outside and he was clearly agitated. I do not know what the other kids thought, but Jason expressed nothing in terms of us removing Bryan from the situation or asking Bryan to quiet down. I was seriously impressed with this; I think I was more self-conscious on his behalf. He accepts his brother totally and completely; the true definition of unconditional love. The great part is when I talked to him about it he looked at my like I was nuts.
Bryan has started 7th grade. In true Bryan form, we went to open house last week. A woman was at a table with some PTA/SAC info and he walked up to her and said “Hi, Miss ____, it’s me Bryan, I’m back!”. He loves his environment at school and was literally thrilled to be going back. He woke up at 4am and was seriously ready to go, showered, ate breakfast, etc. by 6:15 and school doesn’t start until 9:30. He is tall and slim (as a result of camp) and although his nonstop perseveration (is that an oxymoron?) can be extremely frustrating, his eyes reveal a deeper understanding of what is going on around him. For this year the shift will be away from the basics and onto mature things. His OT contacted us to say we are going to finish up cursive writing practice and move on to more practical things; hygiene, cooking a meal in the microwave, making a sandwich, holding silverware better. For speech there will always be reading comprehension, inferences, speaking in complete sentences, and retelling a story. We focus on the improvements, not the results.