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.

 

Plug it out!

bellsLanguage deficits are extremely frustrating, not only for the person trying to express themselves but for the listener. Over the years I have learned to speak Bryan and interpret many of his sayings for their real meaning. Some cute funny things are like this: Bryan always empties the dishwasher. In the middle of emptying it he will say, “there’s a lot of dishwasher.” This means the dishwasher was very full and had a lot of dishes. Or he comes up with silly stuff, like instead of unplug he says “plug it out”. Or he will get some things backwards. He will say to my dad “you’re my grandson” and then we correct him and he says, “I’m your grandson.” All in there, just not always the way you expect it to be. Mostly a good thing.

The hardest thing for many kids with autism, and Bryan in particular, is the exchange that takes place in conversation. One person asks a question and the other person answers. Very very basic, but this essential structure of conversation was what led me to the conclusion something was wrong in the first place. Go back to when Bryan was almost 3 and I took him to the zoo with a friend. He knew the sounds the animals made, but did not truly engage. My friend and her son, a few months younger than Bryan, were having conversation. He was asking questions and answering questions. Not Bryan. Driving home in the car I asked him if he liked the elephant or the tiger and he said nothing. No answer at all. Hmm. As time progressed and tons, I mean tons of speech and language therapy which he still gets today, he started to answer some questions. It was fairly easy to get a who question answered or a where answered. I think for Bryan those were just easier questions because he knew people’s names and heard us often talk about places we were going and these questions don’t require the same level of thinking to answer.  It also taught me that when you ask him something, or talk to him, you cannot assume he knows the meaning of the word. I had to remind myself that you need to give him the definition of the word  because the nuance or the gist of it is not picked up. Still need to do this today. It really makes you think about how much language is actually learned by inference and not definition. As a parent or sibling it’s something that always has to be in your mind if you want to effectively communicate with your ASD kid.

The key to learning for Bryan is allowing him the time to process. It all comes bubbling up if you give it time. However, a huge thing has now started to happen. Like most Bryan things, it is something that just started happening and I say to myself, wow, this is enormous. So here is the thing; getting an answer to the ‘why’ question has always eluded us. It is so frustrating and so challenging, particularly when trying to get to the root cause of some unexpected behavioral issue. For example, he will get upset at school and pinch someone or kick the desk. If you ask him, why did you get upset at school. He will say “because I pinched so and so.” I will say “No Bryan, that’s what you did after you got upset, but what caused you to get upset, why were you upset”. And he will say ” because I hurt so and so” or “because I had a bad moment”. UGH come on you’re killing me. You know the answer but you can’t tell me. He’s 16 and this has always been the one critical piece missing in having meaningful conversation.

Bryan answered a why question!!!!!!!!!!!!!!!!!!!

Now I know you may think I’m cookoo, but it really is beyond huge. It has only happened over the last 10 days and not consistently, but still!! Bryan loves videos, movies, and music. He particularly still loves Thomas the Tank Engine. It is juvenile, but the tank engines have very expressive faces and the videos often deal with the tank engine’s emotions and their interaction. Thomas videos have been regarding as instructional for face recognition and therefore a good tool for little kids with autism. I will not let him listen to Sesame Street or Barney (and thankfully this does not come up anymore) but Thomas is a different story. We do the voices together in the car and he tells me all about the engines and what’s going on. So a few times recently he has told me that one of the engines was upset. I asked him “why was the engine upset”. I was not testing him, I was really just driving and making conversation. He said “he was upset because he was sick and making black smoke”. I paused a second, realizing the enormity of this and decided to probe a bit more and said “why was the engine making black smoke?” and he said “because he ran over some dirty rocks and it got in his engine”. OMG he answered two why questions perfectly. I seriously choked back tears. I said “Bryan you answered why questions, yay” As I speak Bryan, Bryan speaks Mommy. He said, ” I love you so much” which is his standard answer for anything that he does not know the answer I’m looking for but knows I am very happy. Now I know we are not splitting the atom here, but by my standards, we might as well be. To give you a sense of the enormity I couldn’t wait to tell Bryan’s speech therapist. She teared up and said, “we’ve been working on this for years.” It truly takes a village, I’ll tell you that.

So, I am not going to say this is happening all of the time, but it has happened and the more he exercises this “muscle” the more it will happen. I’ve waited so long to get this type of answer but I knew someday it would come. 

 

 

 

 

2014; brought to you by the letter D.

the-meaning-of-DTomorrow is December 1. The year is almost over. 2014 will be memorable for many reasons, not the least of which is that this is the year Earl and I get divorced. Our hearing is on Dec 16 and then we will be divorced. We are still living together for now and that is a function of circumstances. That D has certainly forced reflection on other D words. The despair you feel in going through a divorce, no matter the circumstances, is ever-present. Fortunately, we are focused on being amicable, if not for our own sanity, but for the sanity of our boys. People are constantly asking me, “how are the boys doing?”. To be truthful, I’m not sure. I have no benchmark, no sense of this, I’ve never had to deal first hand with divorce. Earl’s dad died at a young age, but his folks were still married, and my folks will be married 57 years in January. So basically my response is that I don’t really know yet, too soon to tell. I am a student of all things children related and I have been researching how to minimize the deep impact the divorce will have on the children. I have positive and negative examples all around me. The definitive thing, I’m finding is, how you and your soon to be ex-spouse relate. Model respect and good behavior. Do as I do, not as I say. Jason asks questions and I try to be as honest as appropriate. I tell him we love each other, but our family will be different. Bryan, however, asks nothing. This is alarming. Bryan knows all. He was the one standing outside the rooms when we were arguing, talking, and deciding. Bryan, like many kids with autism, is great receptively. He understands everything he hears. So how do I navigate Bryan on this unfamiliar course? How do I let him know none of this is his fault, if anything, autism bonded us, not the other way around. How do I answer the unasked questions? I have been trying to take the opportunities that present themselves. If we are alone, driving to speech, I tell him the custody arrangement. I tell him slowly and carefully. At night when he goes to bed I remind him that he is loved and precious, and in no way should he feel disregarded. It’s tough. Although he does not say much, he does say “we’re getting divorced.” It’s true, it’s not just Earl and me, it’s all of us. When he says that, it’s like taking a dagger; however, he does need to be able to say it. Bryan needs to be given the language for the situation. He certainly knows the concepts but what to say and how to express it are very challenging for him. He has not been sleeping well. Typically Bryan passes out or announces he’s going to bed, but lately he has been up “exploring his body” oy, and just feeling anxious. Puberty plus autism plus divorce equals delirium for the rest of us. I can’t think of the last good, fitful night of rest. Friday night he wouldn’t go to bed until after 11 and then was up since 3 am. He is not quiet, he is never quiet. He knows he is upsetting us, irritating us, driving us a little nuts. I feel for him; he can’t just say what he needs or wants to. At times I feel defeated, down, depressed. The “D”s of my 2014.

There is always another letter and another year. Looking for my “E” in 2015;to work on feeling empowered and energized.

“Love me a little quieter!”

shhhBryan has been very anxious lately. He is responding, in his way, to changes in our household. Bryan can be very loud. He has outbursts about whatever is on his mind. Along with his loud outbursts, he is doing his usual anxiety things, chewing the collar of his shirt, and jiggling the fat on the back of the arm. He also likes to revert back to baby shows. He has been watching Rolie Polie Ollie lately, and well that was brutal the first time around, don’t need to go there again. Autism is the gift that keeps on giving.
Bryan’s favorite thing to scream is “love you”. So that’s a crazy thing. Your kid says “love you” and do you really want to say “be quiet?”. I feel the collective of all of the moms and dads of kids with autism who are nonverbal weighing upon me. Ugh ugh ugh. On Saturday night he was screaming so much, so many “love yous” and after about 500 times Earl said “love me a little quieter”. Instantly, Earl said “that’s a blog”. I wasn’t sure. I have to always let the ideas rest for a bit. One of the things that is different about autism is the one step forward two steps back that is your life. You can think, wow that behavior is gone, he has matured, whew, dodged a bullet. Before you get too comfortable it’s back with a vengeance. Sometimes a recurring thing means anxiety, change, transition. Other times it means a breakthrough of sorts may be on its way. In earlier years if Bryan was really behaving badly the reward, if there is such a thing, was that some sort of language or behavioral breakthrough was not too far behind. Unfortunately, I do not believe that is the case here.
So what can you do? As kids get older, you can’t just manage it away as easily with a quick incentive. As he ups his game, we need to up ours as well. Interestingly enough, water is one of the best things. He loves to take a bath or go for a swim. He just got out of the bath about 15 minutes ago. It is a band-aid for sure, but a much-needed one for the rest of us. As far as the long term strategy, I need to think. Thinking is very underrated. A quick fix won’t do; I need to get in front of this one.
Tomorrow is Jason’s 12th birthday. Jason gets the rhythm of working with Bryan. He knows when Mommy is fried you need to help out. He gets frustrated with Bryan too but at the end of the day he knows he needs to help out. We have our little Bryan-isms and we include Bryan in these little jokes. Bryan likes to giggle with us and it helps to diffuse a tough situation.
For most of my typing of this blog, Bryan has been sitting next to me. He knows I am writing about him but only reads over my shoulder a little bit. The most difficult part of autism, to me, is that he knows his behavior is making us nuts. He does not want us to be angry with him, he does not want to cause problems, but can’t always help himself. I must remember to always take a deep breath and remind myself that we all deal with things in different ways and it is my job, my direct purpose to always try harder, do better, and listen to all of the love yous.

Piece of Mind

No it’s not a grammatical mistake. I was driving this morning and heard Peace of Mind by Boston. That is way too big of a goal for me right now, so let’s go with the piece of mind. That, perhaps, is attainable. If anyone is reading this, here is a newsflash. People with Autism are people. They understand what you say, they have feelings, and the know right from wrong. Do you blatantly insult typical people? Do you not understand that just because someone doesn’t say, “you hurt my feelings” that their feelings aren’t hurt?autismmom
Bryan is 14 and I still have to shout out to the world that receptively the kid knows everything. He knows, he understands, he feels. Can you imagine someone hurting your feelings and you literally cannot organize your thoughts well enough to say something? Can you imagine being my kid and not being able to stand up for yourself. One of the things I like best about myself, which is also the thing I like least about myself is that I’m not a pushover. If it bothers me, I will address it. I have learned over the years how to temper these feelings, and address issues when appropriate, but I am nobody’s wallflower. If you know me, you know this. Enough about me and my nonsense. But, to insult my boy, well now you are amping this up to another level, and it is all I can do today to contain myself. It is not one person or one thing alone, but the sheer frustration that after all the years of dealing with this, it is still something I must contend with from people who know us. UGH
You have to know your kids. I know Bryan. He does not have a mean bone in his body. I am not one of those parents that walks around with their head up their ass thinking their kids are perfect. Nobody is perfect and that’s a good thing. Perfect is boring. In any event, Bryan is a super good kid. He is very sweet and loving and typically is able to relate to most people in some way or another. He has no venom, no ill will, nada. Why do people confuse inappropriate behavior or autism like behavior with malice? If it seems a little like I’m stamping my feet while I’m writing this, well, I am. Would you hold it against someone who is ill if they moaned or complained or cried?
Ok I will stop venting. Acceptance has to change as he changes. If you love him you and want him to do well you need to keep at it, you can’t expect a 14 year old Bryan to respond to the same things an 8 year old Bryan did. Would you expect this from any other kid? Lots of rhetorical questions today. Lots of pieces of my mind all floating around and I can’t seem to grab onto any and make the noise stop.

Adult Movies?

Here is one of the tricky things about autism: you need to be very specific about what you are communicating. Bryan loves, loves, loves movies. He knows the names of all of the actors in a movie he is interested in, he knows the soundtracks, he knows or asks if it’s real or not. However, you need to be really specific. For example, he asks “Can I watch American Hustle?” Before we answer he says, “it’s an adult movie”. Well most people don’t think of American Hustle as an adult movie, but rather as a movie for adults. To hear him ask, “do you like adult movies?” or “I don’t watch adult movies”, well you have to chuckle a little bit. English is a crazy language and I think for kids with autism, where often the nuance or the spirit of the expression is not apparent, the navigation can be a bit tricky. He is also grappling with what is real and what is fake. He asks if animated movies are real or fake. Well they are all fake or fictional but some things are just not that black and white. The story can be fake and certainly an animated movie is not real, but it is a real animated movie and the voices of the characters are real voices from real people. If you are following this then you are doing better than I am. It’s sort of like a brain teaser. If Bradley Cooper is a real person and he plays the voice of Rocket in Guardians of the Galaxy and Rocket is kind of a raccoon, which is a real animal, is Bradley Cooper real or fake? Well you have to “pick a side” and go with it. All animated movies/cartoons are fake…period. Voices are from real people but characters are fake. I think I may need a spreadsheet to remember everything.
The real vs. fake theme has carried to another level as well. Bryan is obsessed with dead relatives and their photos. Every day he is taking a photo of my grandparents and Earl’s grandparents and asking if they are real or fake, dead or alive. Something feels off to get frustrated with your kid and say, “Bryan my Nana Doris is dead, go play X-box”. However, after hearing the question 400 times you get a little frustrated.
I could not blog at the end of the first week of school without addressing it. Bryan is an 8th grader, same teacher, same school, BMOC. He couldn’t wait to go back and he loves his teacher, aides, speech teacher etc. As soon as he got home from camp he went right to my facebook page to look at all of them. I don’t think we had any concerns about his transition from summer to school. Jason is a 6th grader and was starting middle school. This is the first year in a few years, and probably the last year ever, they will be in the same school. Although they have their share of fights, they are happy to go together. Bryan always knows everyone at his school; he is friendly and says hi. At orientation Jason was even a little shocked by how many people knew Bryan and acknowledged him. Jason has had a really good week. He likes his teachers and has made a few friends. However, I am suspect, waiting for the other shoe to drop. What is wrong with me? Why can’t I accept the fact that perhaps Jason is well adjusted and is going with the flow? Why do I have this nagging feeling like I’m being lulled into a false sense of security? Only time will tell.

Incidental Beneficiary

In case you don’t know me I went to law school. I am a lawyer but do not practice. One of the things that happens after you go to law school is that you have a new language. Lots of Latin expressions and some legal expressions that stay in your head. So Jason and I were sitting outside of a movie theater waiting for Bryan on Sunday. Bryan had lunch and went to the movies with my sister (aka Aunt Frannie) and my mom (Grandma). I had this thought in my cooky head that Jason is the incidental beneficiary of Bryan’s autism. For those of you lay people (what a dumb expression) an incidental beneficiary is a party that indirectly benefits from a contract but is not a contracting party. Ok so my interpretation is not literal, we have no contract here. Because Bryan cannot hack certain activities, Jason gets to go and do a lot of things that Bryan cannot. On that same day, my dad (Grandpa) took Jason to the Sony Ericcson Tennis Tournament in Miami. I know exactly what kind of day it was for him. I had alone time with my dad and with my grandfather when I was a kid. I knew he would be spoiled, would eat whatever he wanted, and would feel special. I always share with the boys the wonderful memories I had growing up and going places with my Pop (my grandfather) and my cousins; the orange felt Knick sweatshirts (if you are from NY you say you are a Knick fan and a Giant fan; you don’t say Knicks fan or Giants fan), the cotton candy, the pennants that never got put up in my girly bedroom. Jason gets it and he had a burger, ice cream, got a t-shirt, a hat and a giant tennis ball and was home by 3pm, because HE was tired!! Reminds me of the time my Dad took my cousins and me to a Giant game, we sat on the 50 yard line but between the rain and the food, we made him go home before the half ended. But what really made me think was the incidental benefit that Jason gets from me. It’s not that I don’t talk to Bryan all of the time or spend time with him or do things with him. But because Bryan cannot communicate with me like Jason can, Jason and I have tons of little private jokes and our own thing. Now lots of people have this with their kid; private jokes and a good rapport. What I treasure about my relationship with Jason is that he shares in the Bryan stuff. He gets the triumphs, the little things, the joy. He gets the significance of a Bryan moment. We were waiting outside the theater and there was a poster for Jason Bateman’s new movie titled “Bad Words”. Bryan loves to say “bad words are bad”. How true!!! So Jason and I look at the poster and look at each other and just start to laugh. Not a chuckle, but a full on belly laugh. He has this maturity and depth that I admire so much. I love that I don’t have to explain to him why a small amount of Bryan progress is so huge.
There are other incidental beneficiaries of Bryan’s autism all around us. Our psychiatrist. We went to see her yesterday to talk about Bryan’s meds and perhaps something for Jason to help with some ADD type issues. She started with one patient and now sees all four of us. This is more of a joke, but the friendships, the surprising acts of kindness have all been incidental benefits I could never predict. Today I got an email from a HS friend about an article on autism in the NY Times. I would like to tell you something like this is unusual but I am lucky enough to say that I have tons of people in my life that send me articles, links, etc. So while I may be the designated beneficiary of these items, the incidental joy from these gestures is purely incidental.