You can. End of Story.

endofstoryWhile the focus of this blog entry is on Bryan, the title could apply to Bryan, me and basically anyone facing a goal. Bryan is 17 and is an extremely capable young man. I don’t say this flippantly or casually because there is absolutely nothing casual or inadvertent about where he is today.

About 13 or 14 years ago, when we first learned of speech and language delays, among other delays, before we got the big “A” diagnosis, we went to meet a speech therapist who was considered a guru in dealing with “these kids” and our pediatrician arranged an appointment. Bryan and I went and she was a very business like specialist who asked me a bunch of questions about him and his development. For the next hour, no joke, one hour, she sat on the floor with Bryan and played with him, using Sesame Street character figurines and a playset with slides and activities for the figurines. I sat in the room on the chair holding my breath and and trying not to cry or vomit-again, no joke. What would this woman say after this hour? What was she trying to get at? It was all so unfamiliar to me and terrifying. It was not the first, but it was the beginning for sure, of what would become a long road for Bryan, a long road for our family, and a personal journey for me. After the hour she let me know exactly what she thought. I can remember being in my skin at this appointment as if it was an hour ago. She said here’s what I think: “He’s in there. You will need a tremendous amount of therapy over many years. There is no magic pill; you cannot throw money at this to make it go away. You also need to use his strengths when getting him into schools and programs. You are lucky, he is a very handsome and engaging little boy. If you go to a program, take a photo with you, but don’t take him. You don’t want anyone judging him by his behavior at one meeting.” I listened intently as if the Dalai Lama was imparting the key to life to me. Since this was a long time ago and still very distinct, you know this had a huge impression on me. I feel emotional just typing this and remembering how I felt in the car trying to process all of this info. I won’t take you through the timeline because many of you know it, but it was solid, no bullshit type of advice, including the part about how he looks. It was a crash course in “put your big girl pants on lady, because this journey is not for the weak and you better realize in short order that if you don’t get cracking and face up to reality, you’re screwed”. That’s Janespeak for what went down and for the talk I had and continue to have with myself 14 years later. I am quite fortunate, as is Bryan, that his father was always and is always on board with whatever is best for Bryan, and literally has no ego when it comes to him. Men often shy away from these kids and their issues which can make things worse; but that was never the issue. We were and are still of the same mind when it comes to Bryan: You can. End of Story.

It would be so nice to say that Bryan is now a Phd student at Harvard and has outgrown autism and everything is perfect and rosy. That is certainly not the case, nor the goal. However, the goal has always been and will continue to be that if you work hard and set your mind to something, goals are not only achievable but are inevitable. Kudos are offered up to Bryan and his desire to do well, to learn and to please. What the general public cannot or does not understand is that special needs kids work so damn hard at everything and every moment and task is evaluated. “Gee Bryan was great at lunch last week.” Oh yeah, well how was Jason? I know it’s unfair but imagine your life was one big report card. It’s tough. The one thing I do know is that the most important thing we can give to Bryan is his sense of pride, his sense that he can do and be whatever he wants, without regard to a timeline. And for the record, autism still sucks. Yes, I am grateful for the life lessons, yes I am grateful for Bryan growing up in slow motion and still allowing me to kiss him and hold hands in public, and yes I am grateful for the love and support from some of the most unlikely people. The anxiety that Bryan experiences as “his autism” still thwarts some of his progress and still tests even the most patient of people. His impulse control issues and his language delays still impact him and us regularly. While he feels complex emotions which can be learned from his behavior and some language, his expressive self is still highly challenged. So while I suppose I can and do appreciate the progress, the lesson must always stay in the forefront for both of us. You can. End of Story.

 

What does the J stand for?

I go to see my Mom in her new place on the weekends. Yesterday, Bryan and I went on our way to his usual speech therapy and social group. We planned a regular visit which is about 20-30 minutes. I typically like to take her for a walk. She doesn’t talk much and mostly I feel like Shecky Greene doing a monologue (if you are too young to know who that is google it) but I try to get her out in the fresh air and talk about what’s going on in our lives. The bad news is she doesn’t remember what I tell her, the good news I can tell her the same things over and over and she doesn’t get bored. Ok, I know that’s really not funny, but humor is my way of coping and at this point, nothing about this is funny so I have to make a joke out of it. We sat down outside at a table and Bryan was looking at his phone. I wear a “J” initial necklace and my mom said to me, “what does the J stand for?”. I said “Jane” and there was nothing but an “oh, ok” from my Mom. I had to look away. I felt that hot feeling come over me, and no not a hot flash, but that feeling like when you are holding back tears and/or vomit. I thought for sure she might say something like “my daughter’s name is Jane or right”. I don’t care for the expression “the new normal” but somehow it’s fitting. We left not too long after and I didn’t cry when we left. I took Bryan to his speech therapy and sat in the car for a few minutes reflecting. How does the brain ┬áretain so much info and then slowly lose it all. Fortunately, for now she still recognizes me when I come to see her. She doesn’t know that I’m her daughter, but she does know she knows me. She is always excited to see us; at least for now. The strange thing in all of this is even though she does not recall details, like my name or how I am related to her, she does know that I belong to her. Last week when I was there we sat on a bench and we flipped the pages of People magazine.She likes to look at the photos and it does help give me some things to say to her. We notice the fashion and the ads. She looked at me and said “we love each other”. I smiled but again my eyes filled with tears; much happier tears. When I leave her and ┬áI’m alone I always break down. She is doing well, but the reality that she is not ever coming home still gets me each time.

When I go now it reminds of a time when Bryan could not really make a sentence or have true conversation. I remember when we were still living in NY and I took him alone out to dinner. His inability to make an exchange, even in a small sentence, was a big trigger for me to know he was not a typical child. Ironically my mom is now very similar to that small Bryan. I guess the best lesson is that it doesn’t matter whether they can answer back as long as they know they are loved.

 

The days are long but the years are short.

My brain is filled with all types of blog posts. This year has been filled with many challenges for us, almost none of them having to do with Bryan and autism. However, even though I say this, and Bryan is terrific, the challenge of autism is alive and well. The great thing about human nature is that you always want to focus on what is good and not what is bad. Also, no one really wants to hear how you are doing. No one really cares or gets your day-to-day woes, they want to hear the good, so you put it out there. However, the tough parts always exist, and mostly you just need to focus on your perspective. We try very hard to always focus on the good with Bryan. If you read my blog, you know how I feel about him making progress, and how just the sheer fact that he is making progress, well that propels us along. Let me be clear about this, to me, progress is maturity and independence. Progress does not equal neurotypical in any way to me. Some of Bryan’s behaviors, his autism, as I say, is charming, refreshing, engaging and exhilarating. Bryan tells me he loves me about 100x a day, and although it is often at the top of his lungs and because he knows I may be upset with him, it’s still a great thing to yell if you’re going to yell. But, I don’t want to fool anyone into thinking this is some sort of special needs fairy tale, because it isn’t. If you are looking for that, look away, it doesn’t really exist. So while overall we are seeing great progress, the days are very tough. The problem is that Bryan is unable to chill out. As he says “I need to take a chill pill” but he has no idea what that means, he hears Jason say that or he says “I can be quiet” but isn’t. He is up some days before 5 and is eating nonstop. If we did not put some controls on him, he would eat all day and night. He also began pinching again. He tries to stop himself but if you tell him something he does not want to hear, he often pinches. So receiving a pinch from an 8 year old Bryan was not fun, but 13 year old Bryan who has about 50 lbs on me and is about 5 inches taller than me, is painful. ouch!! What is crazy about Bryan’s autism is the bizarro world in which we live. What is easy is hard and what is hard is easy. If you know me personally, you know I say this all of the time. You can take Bryan to do something he really wants to do, like go to the beach or to a restaurant, and he can be so challenging. It can be a complete nightmare. He may scream, pinch, tell you he “cut the cheese” and manage to stink up a car or restaurant and get you to the point of complete nuttiness. Then you can take him to do something like blood work, or today when Earl took him to get braces put on, and he is a champ, a model citizen. He and I were in a car accident on Saturday. He has a lot of anxiety but not phobias. He was concerned about me and I was concerned about him. His form of anxiety is almost humorous. “I am anxious about dessert”, which is Bryan speak for I want dessert and you better give it to me but I know I have not been behaving well so it’s at risk. I am not sure how to explain these things. Part of it is, at least by my thought process, is that he has an extremely high tolerance for physical pain, so some of the things he does well at are because he is not hurting that much and so he can hack it. Just a theory, but I’m the mommy so I think it’s a fairly reliable hypothesis.
We try to spend our long days reminding ourselves of the greatness of the years; the progress and the maturity. And like all autism stories, anecdotes, blog post, none would be complete without acknowledging how a small moment in a typical family is a HUGE moment for us. Both boys are big enough to sit up front with me now. Jason used to push Bryan out of the way to sit up front. So I told Jason, if you want to sit up front, you need to call “shotgun.” So he has been doing this. Yes, I teach my boys the most important lessons! Bryan is very compliant and goes to the back seat. Last week the 3 of us were leaving soccer. As we approached my car, Bryan said “Jason I am calling shotgun”. Jason said “hey mommy, did you hear Bryan called shotgun?”. We were laughing and high-fiving and it was a glorious moment. Jason gets it and we smiled and joked the whole way home. Jason took his place in the back and we literally ran into the house to tell Earl and we all celebrated! Each time they do it now, rather than being irritated by this juvenile game, I love it. They are siblings doing what siblings do and it rocks. The thing about Bryan’s autism is that he can wear you down, he can exhaust you to the point of delirium and then in one second, with one warm sweet hug or kiss or clever comment, you can be brought back to the reality of the love you have for him and how hard he works each day.

I won the powerball!!

powerball2Ok, settle down, no I didn’t win the actual powerball. If I did, do you think I would be blogging? No, I would be out figuring out how to allocate some funds to family and friends and then I would write some short blog from Florence. firenzeSo pretty much everyone does that “what would you do if you won the lottery” game with their spouse, family, friends. Yesterday I picked up Jason from Hebrew School and stopped to get gas in my car. We decided to go into the gas station convenience store to get some gum and go to the restroom. When we bought gum we also bought a powerball ticket. I usually just buy one. I know that is dumb from an odds perspective, but really, if you go that route, there is no end to the amount you should buy. We also play as a group at work, and that seriously increases our odds, but still it is more likely to drown in your bathtub than win. So Jason and I got into the car and he asked how much the powerball is right now. Earl has always played lotto and the powerball so he is familiar with the tickets and the discussion about winning the big one. I play if I remember when I go to get gas or we do it as a group. As you can picture, on our way to get Bryan at speech therapy, Jason asked me what would you do if you won?<a

Here’s how it went:
Jason: We would buy a house in NY, right Mom?NYC
Me: Yes, of course we would, and houses for Aunt Stacey and Aunt Frannie.
Jason: Would we give money to charity?
Me: Yes, of course, probably a million dollars to autism charities.
Jason: Do you think they will ever find a cure for autism?
(So here is my aside to that question. I have never been invested in a cure. I guess that is because I do not look at autism as a disease. Does cure imply disease? Hmm.)
Me: Well I am not sure. I don’t think of autism really as a disease, but I would like things to be easier for Bryan and other people with autism.
Jason: Well people with autism don’t know they have autism, so I guess it’s ok.
Me: Yes, Jason, they do. Maybe not at a super young age, but Bryan knows he is different. He may not be able to articulate what is different but he is aware enough to know that he is. Also, adults with autism know they have autism. I am not sure it’s a good idea to take away their autism either. Maybe they have it so that their brains can function better, smarter, or more creatively. They have other issues, but their brains are always working.
Jason: Maybe they could get that thing like an antidote, you know to stop if they wanted it.
Me: Interesting idea, smart boy.
Jason: Would you want Bryan to have an antidote to autism?
Now if you know me and us, you know that Jason has asked this question before and in many different ways. I wonder if he wishes Bryan did not have autism or does he wonder like we do what is really in Bryan’s mind. I wonder if he thinks, as I do, that wouldn’t it be great just to have a regular conversation with Bryan to know what he truly thinks about his world, his life, his being. These questions are so interesting, because, like teaching Bryan how to answer a why question, we have to teach Jason that there are why questions we cannot answer.
Me: Jason I always struggle with this. On the one hand I would love for things to be easier for Bryan, like a typical kid, on the other hand, would Bryan really be Bryan without his autism? As predicted, just saying this triggers watery eyes.
We got out of the car and went into get Bryan from speech. Bryan’s speech teacher explained to us how Bryan needs to work on why questions. We know he needs this but the exercises she gave me truly go to the essence of this disorder. One of the pictures shows a person driving and there are raindrops on the car and the windshield wipers are in the middle of the windshield to show they are working. The question is “why do we use windshield wipers?” So simple, something people figure out from being in a car and a typical child can just say why we use them, no one has to explain it or teach it. For the child with autism, the inference, that’s where the challenge lies. Bryan knows why we are using them, but can he take the thought of why and translate that into a comprehensive response? Not easily is the answer. These are drills we must always do. They are a reminder that you must give your child the tools, the language to persevere and progress. The most obvious inferences and conclusions are always the most difficult.
Bryan has trouble saying the letter “L” and saying “th”. Marcia, our speech teacher, (I say our because this woman cares so much for all of us, not just Bryan) gave me a sheet of sentences that contained one or more words that started with “L”. She said you must read the sentence to him first so he can get ready for the “L”. Wow, I had never thought of it that way. He must prepare his brain to say the “L” since it is not a natural sound to him. Genius!
We got in the car to drive home and I thought wow, I think I already won the powerball.

Lolly, Lolly, Lolly get your adverbs here!

Bryan has always been able to communicate his needs. “I”m hungry”, “I go to the bathroom”, etc. But over the last year or so, thanks to Marcia, the greatest speech and language therapist here in So Fla and school, and maturity, Bryan’s vocabulary has expanded dramatically. It’s not just the longer sentences or answering questions, it’s the qualifiers, the adjectives and adverbs that have really made a huge difference. For ex. This morning he woke me up at the standard 4:42 am by coming into our room and saying good morning and giving me a kiss. Then he snuggled into bed with me and said “Mommy make my lunch for school. Mommy make me breakfast.” I said “I will at 5:30.” This is my standard answer, just trying to buy a few precious moments under the covers, knowing additional sleep is not an option. Then he said, “Make my breakfast first.” As I always say, it’s the little things that get you. Lately we have been hearing words like “again” and “my favorite” and “still”. Another great concept he is working on is the difference between asking and telling. He always asks, even when he means to tell. So now I say to him, “are you asking me or telling me?” He not only knows the difference but can express it. This may all seem very trivial to those reading this; but communication is the essence of humanity. In order to relate to people, you must find a way to communicate effectively. Each adjective, each adverb, each appropriately expressed sentence or question is a triumph for him and for us.

On Sunday I was taking the boys to meet my folks for brunch. Bryan loves brunch at my parents’ club. He can have bacon and a bagel!! Bryan would live on bacon if possible. So he took a shower and got dressed. He picks out his own clothes and typically does a fairly good job of matching. However, he put on a shirt that had a bunch of stains on it. Ugh. So I had to tell him to change his shirt. Our 12 year old boy put up quite a fuss, “no I can wear this shirt!”. He gave me a hard time for a few minutes and then changed. Earl and I had a chuckle. How typical of a preteen to want to wear what he wants and to argue with his mom about it. On balance he is a super good kid and changed. Earl and I try to take note and acknowledge these moments of typical behavior. If nothing else, they provide a sense of hope for the future Bryan as well as remind us to stop and enjoy the present Bryan.