Sugar, yes please.

There is truly nothing greater in this world than the joy your child brings to you. While the last week or so has brought some of the greatest highs, I have experienced some significant lows too. I try to keep the highs front and center, but I often find myself shaking my head at some of the nonsense in my life and some of the negativity that tries to latch onto me. One of the challenges I face, as do many others, is juggling all of my responsibilities. I get a lot of “you have a lot on your plate” to which I reply, “my plate is a platter!!” but hey it’s my plate so whatever. Everyone does this, so it’s not in any way unique to me, however, I not only want to and have to handle them, I want to do them well and with a good, positive attitude. I function well at a high activity rate, but every now and then one thing pushes way too far and it’s the straw that broke the camel’s back. I am reminded of that silly board game that was around when I was a kid where you literally kept piling straws in a plastic camel’s back and then when there was one too many and that damn camel fell, you lost the game. ha! Sometimes I feel like that camel (ok, not a great visual) and I’m daring people to put more on. So what happens when there is one too many…? I don’t have the luxury of hiding out from my responsibilities. I do try to do as many fun things as possible as a way counterbalance many of these difficult or upsetting things. Work hard/play hard may be a cliche but for me, it fits. I just don’t want to miss anything!! straw

So yesterday I was at maximum capacity for BS, nonsense, stress, aggravation, responsibilities, etc. A few things have been brewing and a few things have been tugging at me and I was just feeling a melt down come on. Not exactly a meltdown, more of an implosion where a good cry/sob was imminent. One of those times where I wish I had the ability to go home, get into bed, under the covers, and just get into the fetal position for a few days.  No such luck! I had to take the boys to the orthodontist in the middle of the day. Not the best timing, but what can you do; they were taking them at the same time so that helps but after being out of the office for two days last week, I was feeling very work overwhelmed.  They decided to take Bryan’s braces off and while that is exciting and great, anything with Bryan has to be choreographed properly. To make a long story short, we needed some lasering of his gums and some bonding which were all supposed to happen at that appointment when the braces came off. It was not scheduled properly by the orthodontist and that was about one straw too many for me. You see Bryan’s teeth had shifted previously after the braces came off because he would not wear his retainer and removed the permanent retainers multiple times. He had to get his braces put back on so you see this was sort of big deal. While we were trying to work it out, Bryan was so excited to get his braces off. The orthodontist’s office is an open room with many treatment chairs where lots of assistants are working on kids, in other words, a room full of about 12 people plus the two orthodontists who come in and out. Bryan was so elated, he grabbed Jason and me and the assistant and made us put our hands in the middle (as if we were a sports team getting ready to play) and he said “1, 2,3, braces off,  yay!!” We all lifted our arms up in unison. The whole office erupted in laughter and cheers and then I was struggling to hold back the love cry. He completely leveled me. How could I possibly feel anything but joy?? Get a grip Jane. Jason and I giggled and smiled and the whole thing was met with hugs and high fives. Everyone in the office, including other patients, assistants, office staff, doctors, etc. were laughing and smiling. After that Bryan had to have several injections in his palate for the laser and impressions and bonding. He sat like a champ. No anxiety, no squirming, nothing. If you know autism you know one thing: what is easy is hard, what is hard is easy. He never moved for a minute and sat there for his work for an  hour and a half. The minute he got up the anxiety kicked back in and he wanted to know about when he would get picked up from camp in August.

For me, a great reminder that no matter how bad you feel, no matter what is getting you down, that one drop of sugar can make everything sweeter.

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.

 

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.

 

Love is Love is Love

IMG_0384 (1).JPGI do not make New Year’s Resolutions, I make hourly resolutions. I couldn’t possibly store up all of my potential improvements to force them out in a year end blast. My journey is iterative and I’m forever fine tuning the workload. At this point there is also a collision between resolutions and  bucket list items. Kind of what do I need to do vs. what do I want to do, etc. Good news is it’s my set of lists and I can manage it any way that fits. So although I do not make New Year’s Resolutions, I do try to take a pause to appreciate my life and the people in it at this time of year. So this  year I am going to focus on love. When I watched Lin-Manuel Miranda give his Tony speech right after the Orlando shooting, he said “love is love is love….” in reference to the respect for the people who are homosexual and were victimized by the gunman. It is a great reminder and his speech really touched me. It was a rough, emotion-filled speech/sonnet fueled by his need to acknowledge the Tony he was receiving  and yet his compulsion, his pure heart, that couldn’t pass up the forum to comment on the most recent tragedy. Something about his delivery, his body language really struck me; this man feels his words, he just doesn’t say them. It was almost as if he was holding back the words but they had to escape from his brain via his mouth. Do I have that much passion about anything? Hmm, kids maybe. I actually think my main passion at this point in my life is to try. I just want to try at being better at everything. The only way for me to achieve this is to work on what is most important, the priority, my love relationships; to which I am proud to say I have plenty. So here are some of the ones that are most precious to me and my recognition for their significance in my life and my desire to enhance them.

Sibling Love: If you have a sibling and you are lucky enough to love them and feel love in return, you get it. This person who shares the unique joint perspective of growing up in the same home and watching parents and family members influence your development, there is such a crazy bond that a quick glance over dinner can say it all. I am proud to say that the shitty relationship my sister and I had growing up, the constant fighting and comparisons have been left in our childhood home and the mutual respect and fun we share now makes up for it all. Sharing the burden of our aging parents has solidified the bond even more. Fortunately we understand our individual and collective roles in the process. My sister, luckily, like me, finds humor in the humorless. We could write a book with optional titles such as “laughing at your life when you should be crying”, “Things you never thought you would hear or should hear coming from one of your parent’s mouths”, and “Who am I and how did I get here?” As far as sibling love goes, I cannot even do justice to the sibling love between my boys. They adore each other; their relationship is very complicated, yet not. Bryan may be older by 2 years and 8 months, but chronology is not a significant player in their situation. Jason has always been a very caring and loving brother. Often other people remark about how good he is with Bryan, how helpful he is, etc.  To Jason, Bryan is just Bryan, his one and only sibling, and there since his birth. I would not say I take it for granted, because that would be untrue, but if you truly know Jason at all, it’s just who he is. His level of empathy and compassion for people, not just Bryan,  is just as much a signature trait of his, as autism is for Bryan. It’s hard coded in and that’s that. And like all sibling relationships there is ebb and flow in their bond and growing pains both literally and figuratively.

Parental Love: So you know the love I feel from my mom has changed dramatically over the last few years. I no longer have the ability to call her multiple times each day just to share something funny or get some advice. I no longer have that confidant who always had my back and thought I was the jammy jam. My mom was so reasonable and so thoughtful in her advice and she had many close long term friends who also feel the void. In later years she really helped me navigate tricky waters between my dad and my ex husband and ultimately was very supportive when I began to speak with her about my ailing marriage. She was a homemaker and not a career woman in any way and we talked about how different our lives  were and we agreed we each were programmed so differently that we could not walk each other’s path through life. My mother respected me as a woman, mother and business person. What propels me now when I see her is this need to be even better because I don’t have her to talk to. I want to show her, or really me, that I can be a “big girl” and handle things. In order for me to move forward I need to have personal goals; some very tangible and achievable and some more esoteric which manifest on the fly. Either way, I want my Mom’s legacy, for me, to be that I am that girl she loved and respected. I need to earn my way. With my Dad it’s become such an interesting change. I was always daddy’s girl and he looked at me with love and pride since childhood. Over the years there have been tons of bumps and bruises but now we are on a steady course, banded together over decisions for my mom  and forging ahead with his new and uncertain life.

Mommy love: Is there anything so great? Before you have a kid you hear about this gripping bond people feel for their children. You think it must be something special but you cannot truly conceive of it. The little angel appears and you think, “oh so this is what they were talking about!!!” Take my heart, melt it over and over again. And then when it was time for another, you think can I really love another one just as much? Yep you can and you do. My boys are my joy, my focus, my reason, my why. Their triumphs are mine and their challenges, well yep get those too. ‘Nuf said.

Bryan/Autism love: The kid knows how to work the fan club. He is a one man PR specialist for autism awareness. He loves to love and reaches out on a daily basis to friends, family, teachers, therapists, counselors, etc via facebook, facetime etc. I am truly fascinated and beyond appreciative of the warm reception he receives most of the time. Whenever talking to the recipient of these daily calls, etc. they feel special, as if contact from him is directed only at them. Who does not want to talk to someone who makes them feel special? Autism, however, is still so challenging, imagine having someone in your home who literally cannot stop talking or repeating and at the same time is so anxious the minute they sense you are not happy with them and what they are talking about. It’s the ultimate test for Jason and me on a daily basis. But somehow Bryan’s sweet goofiness, his silly inappropriate behavior more often than not forces a chuckle between us and we forge ahead. When meeting my cousins a few days ago for lunch,  I was so happy with the way they celebrated his silliness and made him feel just like he was “one of the kids”. We have tons of friends near and far that are cheering for him. No real words suffice.

Friend love: I am truly beyond lucky to have wonderful lifelong friends. My bestie  is a lifer and she is my touchstone for all things. My close inner circle of female friends are a combo of coaches, partners in crime and sisters from other misters. My close friends are not limited to women, however, I have some incomparable male friends that I adore. Some of my friends live nearby but often they are in NY, solidifying my need for quarterly visits up north. Over my years in Florida, I have made many new friends that have started out either as “autism parents” that morphed into real friends or “work colleagues” that have also become warm, true friends. What I value besides the loyalty and trustworthiness of my friends is the variety. Some friends are more advice givers, some are more just buddies for happy hour. Either way, I love observing human nature and understanding the different dynamics.  I am a very social person and I enjoy hearing other’s life stories. At this point in my life we have all lived a while and no one is without some sort of challenge, lesson, or funny anecdote which I find very captivating.

Cousins/extended family love: If you know me personally, you know my cousins are not cousins they are brothers/sisters, nephews and nieces. One of the main attractions for living in Florida was the proximity to this crazy clan and you just have to see my face when I’m with them. The depth of these relationships is personified through unending teasing, laughter and appreciation. If you go to one of our events and you left your thick skin home, well sorry Charlie, you are screwed. The need to laugh at yourself through the eyes of those you love is a great lesson. It is so freeing to know you can be yourself with a large group of people who will take you down and build you up inside of any group gathering. The link between us and our kids is one of the best parts of my life and although I tell them all of the time how much I love them, they know just by my body language displayed at any event.

Pet love: This one should be quick. Furry creatures make me happy. A curl up on the couch with a yummy dog or cat is therapeutic and warm. I love my animals, they are family and they make our lives better.

Romantic love: It is always a necessary part of life for me. I am a very affectionate person and I would like to say I have fallen in love since my divorce. I have not. I have fallen in like once or twice which is electrifying!  I have found some connections and have had fun along the way. I have learned that I am still capable of having great romantic feelings and that feels awesome. I believe real love is out there for me and I will not settle or fail to take risks to find it. No pain, no gain. Simple but true. I am totally willing to be in the game for the better of team me.

Happy 2017!

 

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.

 

 

Choose your mindset, yep I know I have used that title before.

IMG_2951Some things resonate. A few years ago I wrote  a blog post about a speaker I heard say to “choose your mindset”. It gripped me then, and clearly, still has me now. The language we speak to ourselves, the things we tell ourselves matter. If you are not good at something and keep reminding yourself you are not good at it, well you are just reinforcing that bad behavior. You have a choice. Tell yourself you’re a fuck up or tell yourself, wow I just learned something and now I won’t do this again. I am evolving! I am a study of all things behavior and people, particularly myself and my kids. I have always been introspective. I hold myself to a very high standard of treat people how you want to be treated. This summer has challenged me in so many ways, and the mindset I have chosen is “I got this”. I am stumbling here and there for sure, but the focus, the way I speak to myself is positive and empowering.

If I have to trace this feeling back to anything, it is Bryan. If you tell someone you have a child with autism, you often get, “I’m sorry”. Damn cuz that hurts. It is easy to fall into the space of why did this happen to me or my kid. To build up the positive muscle of embracing the journey, you have to work it out. You have to keep pushing it and pushing it. No quick fixes on that one. And you fall of the wagon for sure, like when someone says, do you think Bryan will drive soon? Or do you think  he will be able to have  a job? One big lesson is to remind myself that no matter what anyone asks, they are typically inexperienced in this world and just don’t know what to say. I love the saying that you need to love the child you have, not the one you expected. Great lesson, not just for parents of special needs kids; this applies to all parents. But if you know me, you know that saying nothing to me or ignoring me doesn’t work well for me. Ignoring something or someone because addressing it or them makes you uncomfortable is immature. If you want to show someone you care, show them, take action, address the topic. No one expects anyone to have answers, but empathy is always welcome.

I had a huge reality check on this one recently. My mom has Alzheimer’s and has been declining rapidly. On two occasions recently she did not who I was. To tell you that was devastating is a colossal understatement. My dad is the major caretaker and is sad, overwhelmed and frazzled. When my sister and I call and he tells us some things that have occurred I find myself saying dopey things that I would hate if someone said to me about Bryan. A lesson for me to once again be gracious for those that ask about him and recognize that when you don’t have experience with something, it is challenging to help someone. I remind myself that these people are at least saying something and not ignoring it. At least they want to try and help. My dad gets very upset and says to us “you have no idea” when we ask how things are. So I decided to change my mindset and ask him, “Dad, what can I say to you when you say this?”. The answer is fantastic and the same answer I always want to hear: “just tell me that you love me”.

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.