Always two there are, no more no less. A master and an apprentice.

So I’m quoting Yoda. Does that make me a Star Wars geek? I guess maybe, but I’m really not, I just dig his quirky  little backward way of talking and his intonation. His sayings are clever and provocative. They make you smile just as you say them.  Star Wars has  a significant place in pop culture and I can respect that, for sure.yoda

I am forever the apprentice, never the master, particularly as it relates to Bryan. Recently I had a conversation with a case worker that assists in navigating benefits at work. This man is an Occupational Therapist by education and practice, but he is also a trusted advisor to me. I have been speaking with this man, approximately 2-3 times per year for the last 7 years. He knows all about Bryan, his challenges, his needs and his progress. Another example, for sure, that it truly takes a village to raise a kid with autism. So this man helps me to navigate the available benefits and based on our discussions and his probing, we talk about what Bryan may or may not need for the upcoming year and he translates that into credible recommendations for assistance. One of the benefits of this benefit (ha!) is that this man really tries to understand who Bryan is, although they have not and will not meet, and tries to understand my philosophy in parenting Bryan. He can gauge progress by asking pointed questions the answers which reveal  growth or deficiencies. He forces me to not only think about what we are focusing on now, but the 3-5 year look ahead. Both are necessary and practical, yet stir emotions. Bryan will be 17 this month (there must be a math error) and it’s exciting to see what he can do now and where he can go. So I was describing to this man all of the independent functioning Bryan is doing and all of the great things he can do at home, at school etc. However, and this is the great part, there is always more. Always more to be done, always more to implement, always more to learn. He made two great suggestions. He knows Bryan is very visual, as are many kids on the spectrum, and I told him that Bryan likes a written schedule and also loves his phone and ipad. He suggested we add all of his plans on a google calendar. Duh, I use it all of the time, why didn’t I think of that??? Bryan will love that. So easy, so simple, yet so smart.

Another thing he and I talked about was Bryan’s use of money. At school he has personal finance aka math and he loves it. My caseworker suggested getting Bryan a prepaid debit card so he could pay for things and learn how to use the debit/credit machines. Another fantastic idea, all geared toward independence. My most favorite thing about talking to people who work with or are parents of kids on the spectrum are just these little tidbits we can share. It’s never the big things; we don’t miss those, but those small incremental wins are so fruitful. The student, grasshopper, apprentice in me is awakened by these suggestions and now I’m focused again on the possibilities. Bryan came home from school a few weeks ago and told me he is now going to FAU on Thursdays, “with the big kids”. He was very proud of himself and I knew based on his sense of urgency that the school told  him to make sure he told me. It’s not the rate of progress that matters, only the direction. So much behind us, yet so far ahead. Two weeks we went to Disney, a request by Bryan in celebration of his upcoming birthday. I like Disney but have been there many many times (incidental benefit of Florida residency) and he used to have tremendous anxiety there, even though he loves it. He was not anxious at all. He was over the moon. Jason and I shared a few quick “look how happy he is” moments when observing Bryan. So we decided to go on the Speedway at the Magic Kingdom. You know, those seriously old cars on a metal track. Jason went on his own and I went with Bryan. In my head I really wanted to see how he could navigate the car. He was fine with the driving part, as I knew he would be, but he was so distracted by people; nope not ready for real driving  yet. Years ago I would have panicked that this means he won’t be able to drive. Now I know it just means he will not be driving anytime soon because he’s not mature enough to focus on the road without the distractions. Bryan’s sheer presence reminds me that there is always plenty to learn if you are willing to be a student.

 

He’s got the moves like Jagger!

I’m doing it. You may unfriend me, unfollow me, dislike me, but I’m risking it. No, this is not a political post. It’s something way way way more important. It’s a bragging post, not about me, but about Bryan. Today was the day for parent/teacher conferences at Bryan’s school. He goes to a great private school that serves the neurodiverse community ages 14-22. Bryan is 16.  Last year was his first year and the first year after our divorce. To say he had a rocky start is the ultimate understatement. You know when the headmaster calls you more than 3x a week you are screwed. It was such a reach for him, I really wasn’t sure he could hack it. It took him the whole year but he did a good job and by the end he adjusted.proud

Well, this year, he has completely turned things around. Once a week they go to Florida Atlantic University (FAU) for the day to learn how to behave on a college campus as well as how to interact appropriately. Bryan loves it. He loves to go to the school cafeteria!!! So today, when I met with the teacher who takes him there, she said “Bryan is a rock star at FAU. I am thinking about moving him to the harder class that goes there or sending him twice a week.” Um yay and double yay.  Bryan has always expressed an interest in going to college, and I bet he will. You can never,  ever, ever count out a kid with autism. The surprises, both good and bad, well they never end. Of course I was elated, of course I was proud of him, but more than that, I felt so incredibly hopeful for his future. I met with 3 more teachers, math and language arts,  and then the teacher that does yoga with him and takes him to his part time job at Simply Yoga. This great program at school takes kids into the community for jobs. He is so proud of his job. He folds the mats and blankets, he puts the clothes on display and sweeps. A very typical teenage job!! The teacher told me that Bryan takes on a complete professional persona at the job. I’m kvelling!!! A professional persona!! What? Can you fathom the awesomeness of that? My loud Bryan, who is almost never quiet and has so much trouble modulating his voice, has a professional persona! They also do yoga at school to help stay calm. She told me not only does Bryan do the yoga, and stay quiet, he sometimes leads the class in a few of the poses. If I was not so over the moon,  so completely thrilled, I might have thrown the BS flag at them. Don’t get me wrong, I have been getting reports since school started that he is doing well,  but to go from teacher to teacher to hear in their words how well he is doing with tangible examples, it just fills my heart with so much joy, so much love for him. I came home and told him how excited and happy I was to hear all of his teachers talk so highly of him. Bryan, smart as he is, says, can we get movie tickets? Of course I said yes. I think I would’ve said yes to almost anything.

So by now, if you are still reading, you are either really excited too, or getting a headache from how upbeat I am. Here’s the thing. When your kid has autism, you spend most of your school meetings holding on to the table to brace yourself for the bad news. You brace yourself for the bad school calls and to hear that your 12 year old is reading on a first grade level. You also know that you must enjoy every triumph because things can change at any moment. The lows are very low, but the highs are sweet as sugar.

 

 

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. 

 

 

 

 

A letter to me.

You know all of the clichés; hindsight is 20/20, can’t look back, learn from your mistakes. I get it, no one knows what they don’t know, but it would be so great if you could just go back in time for some basic life lessons. April is Autism Awareness Month, so it’s always time to think about where we are on the journey now, as compared to when we first busted out our compass and started trekking forward. So what would I say to my younger self, the newish mom, absorbing and coping with all things PDD (Pervasive Developmental Disorder), then Autism? I think it would be pretty basic, but as most of us know the good stuff is always fairly obvious.

  • Listen with your heart. Sooo easy to get caught up in what others tell you. “you should try this” or “my kid did that”. Every kid on the spectrum is so different and most of these kids, particularly Bryan, have language deficits and cannot tell you exactly what they need or feel. Trust your mommy gut, feel your way through, it won’t let you down. If you know in your heart something is good or bad for your kid, go with it. My heart never lets me down.
  • Don’t judge. This is probably one of the biggest lessons I have learned. When you see a family struggling with their kid or if you see a kid acting up, don’t judge. I realize now that so many people have all kinds of personal struggles and each person copes differently. Just because it’s not my way, doesn’t mean I should judge that person. I have not walked in their shoes and vice versa.
  • Be open. Be open to new people, new things happening, new ideas. Be open to other treatments and therapies besides established medical protocols. I revered doctors growing up, and still do, mostly, but I learned that I am a smart person and just because you went to medical school doesn’t mean you know all. One little side note: if something looks like it’s too good to be true, it usually is…
  • Always show respect. When dealing with teachers, doctors, therapists, show them respect for their perspective, expertise,  and time. The old expression, you get more with honey than vinegar, rings true here. Each of these people interact with your kid in a different way and have different life and professional experiences. You don’t have to agree, you don’t have to take your kid back to that person, but even the  negative experiences have left me with some little nugget of learning. A very close doctor friend of mine told me a long time ago to see lots of different doctors. Each see different patients and you never know when something may trigger a reference or an idea for you. Autism is not black and white so things are always changing. You have to change with it and keep getting more info.
  • Slow down. I spent my younger years concerned with reaching goals. I still set and like to reach goals but with Bryan and with my adult self I realize the journey, the process, the pace, can be as important as the goal itself. I’ve said many times that raising a child with autism is like raising a child in slow motion. Things that typical kids achieve at a certain age don’t go that way. I have clichés for this too, it’s a marathon, not a sprint, but there is truth here. You need to make peace with the idea that your kid may not do things “on time” or at all, but either way, take a deep breath and enjoy him.
  • Acknowledge progress. Great story from yesterday. Perhaps this is what got me to blog anyway. I took the boys out to lunch with my mom and sister. Nothing swanky, just Toojays (deli/diner in SOFL). We have done this many times. Bryan was antsy in his chair and hungry and just a little off. Lunch was tense and then we left. Jason took Bryan swimming and all seemed a bit better. Around 4:30 Bryan was very agitated and hurt Jason. Bryan likes to dig his nails into us, clearly a sensory thing, and broke the skin on Jason’s hand. Here is where the good stuff happens. It was a little early for Bryan’s night meds but we encouraged him to take them. He did but I have learned that if he thinks you can get over his bad behavior, if you can acknowledge that something bad happened but you can move forward, he can calm himself down. I told him, “everyone has a bad moment. You now need to get over it and calm down.” I have also find that if I get even nicer, warmer, sweeter, he will calm down. If I get angry or upset, there will be a colossal melt down.Hmm, so am I acknowledging his progress or mine?? In any event, my younger self could’ve used this advice, although I have to say sometimes this is way easier said than done.
  • Open up. My parents are/were very private. Too private if you ask me. I learned that sharing with others helps others to share with you. Parents are the best resource for autism and by sharing my experiences I have had others share their experiences with me. Priceless, awesome, fantastic!!!  If you are an autism parent you will know that there is truly nothing better than another parent telling you the real deal on a therapy, treatment, school, etc. On Saturday I took Bryan to Golf Buddies. I started chatting with another Mom who I have known for years, but have not known well at all. I have watched her daughter at all of the buddy sports and she has seen Bryan. We talked nonstop for the entire hour. We tackled major issues, marriage and divorce, school, housing for our kids, etc. The hour flew by and when I left her I had that feeling of community, the feeling of “wow that lady is my peeps” kind of feeling. The warmth of that hour really inspired me to think about how truly lucky I am to have Bryan and all that goes along with him.

 

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.

Throwing the BS flag

One of the guys I work with always says “I’m going to have to throw the BS flag on that” for a comment or a statement that he thinks is BS. He’s a big sports enthusiast and coach of his son’s baseball and basketball teams so he uses sports type references all of the time. I like this expression and have adopted it. So recently there was an article in the NY Times and a piece on Good Morning America about parents of an adult with autism that used Disney movies and characters as a way to get their son with autism (nope, still not saying autistic) to speak and have conversation. So a little bit I need to throw the BS flag. I am not discounting what these people said or did or their success. Since this young man is now 22, who knows if what he had was not really autism at all. He might have had seizure disorder or something else. The criteria for autism or autism spectrum disorder is different today than it was then. I am not here to judge what another family does to work with their child. After all, these kids come with no instructions, protocol, treatment path, nada. There is no roadmap, damn we are all Christopher Columbus with 3 boats and no captains. However, where I get concerned and where I need to say “please hold” before you all go out and order the 27 dvd box set from Disney is that every kid or each kid with autism is completely different. This is more than just a casual remark; it is profound and it is one of the factors that differentiates autism from other disorders. The quantifiable info just can’t exist. We have 3 other families that we know very well. When we all used to spend time together there were at least 6 kids with autism among us. We practically had the whole spectrum there; a literal Venn diagram of delay disorders. So while I don’t want to throw the BS flag at this family per se, but at the whole, I throw it at the this will work for you too. Not that it isn’t a good idea, but I just feel caught in the chasm between what is good and well-intentioned and what is the cure. Perhaps I am coming off negative. I know it’s a good idea to publicize. I know it’s a good idea to try new things. But I guess more than anything I am of the mindset, if anything looks too good to be true, it probably is and some of these things, methods, fixes just seem to give people the wrong impression. Admittedly, I am biased but I still feel like a disclaimer of sort needs to appear on all of these new stories, not unlike when they advertise meds. This worked for X but may not work for you. Or, this may cause other side effects such as X or Y. I also throw it at the people who say their child has autism but doesn’t. Yes, Jenny McCarthy I am talking to you.
However, I am not cold-hearted and do appreciate the triumph of this family and this young man. It is fabulous to see a kid on the spectrum find his voice, literally and figuratively. I am also extremely happy as a parent that they can find a way to communicate with their child. I think it is essential that we remain open to new ideas, just not to cling to them like they are a magic pill. If you have a kid with autism and you are still waiting for the magic pill, stop on your way home to buy a lottery ticket to pay your bills. Same reasoning. It could happen, but really, what are the odds?

Going back to the start

Bryanage14 I love that Coldplay song The Scientist, it really touches me. Music always forces reflection for me. Driving to work today, Siri, accessing my playlist on my phone, played My Wish by Rascal Flatts. We used that song in Bryan’s video montage at his Bar Mitzvah. Tears filled my eyes. Today is my sweet boy’s 14th birthday. I keep thinking about how far he has come. He was such a yummy little baby, so well-behaved and so compliant. In a lot of ways he has not changed much. He is still sweet, gives kisses and hugs all of the time, and says I love you all day long. He is ready to go for any activity within minutes and follows a great morning routine. But what is ironic about this age, and his ability to communicate now, is that all of the tools and methods we used to get him to this point now get undone. For Bryan, and many kids with autism, it’s the language deficit that can be the most challenging for family members, friends, and teachers. In the early years of speech and language therapy he had a visual schedule (pictures only in the very early days), he was prompted to do every task, read every line, answer a question with looking in my eyes. Now he has plenty of language and we are working on not prompting, no visual schedule, just conversation. So how do our kids figure out what is expected of them now when for many years you prompted them and now you don’t? How do they know what is next in their schedule when you take away the visual? You see as a parent you are told, and of course unless you are some sort of parent/autism expert, which of course no one is until they have the kid, you listen to what everyone tells you because you don’t know how to make your kid succeed and these are the experts. It’s a tough situation. I am not trying to be critical; just acknowledging the irony and asking, how will new generations do this better? They will do it better because there will be so many adults with autism who will be able to teach kids how to learn in a way that makes sense to them. It’s an extremely exciting thought!
Reading comprehension is always a challenge. So for years Bryan was taught to literally go back to the story and find the answer. Sounds good, right? But since he is so visually focused, he can find the sentence or two to answer the question, but he still does not really know what the story is about. So instead of using the visual, it’s time for him to read a story and then think about it and answer the questions. He has to tell the story from memory or at least the gist of it. So now, my boy who always worked so well with his visual skills, must now use his auditory skills. This is the thing…So he learned for all of these years one way and now he has to move on to learn another way. At first I found this so frustrating on his behalf. But as time goes on I realize, duh, this is just the process. You cannot run before you walk. I am good with this from a clinical perspective, but from a mommy perspective it is both good and bad. It’s good that he is learning and is growing and adapting, but bad because he must be very confused. I wonder what he really thinks about things. I do know that Bryan is a tremendous people person. He responds very well to people he knows have genuine love and affection for him. You can’t fake it with Bryan. You can’t pretend to love or like him; he will know. I see it on his face and can tell when he is not trusting. If you get a lukewarm response from him or a blow off it’s because he either doesn’t know if you are trustworthy or he doesn’t know where he stands with you. It’s so interesting that some of his best skills are intuitive and social on a spectrum where socialization is considered almost non existent. Now that he is a big boy of 14, looks, smells and speaks with a man’s voice, life is scarier than ever. The questions that seemed so far off, will he drive a car, will he go to college, will he have a job, they are not so slowly creeping up. I can no longer say, “oh he’s so young, we’ll see”. We are at a time now where we must empower him and ourselves for the impending adulthood. We did still get him a cookie cake for his birthday, so we are not quite there yet, thankfully!