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!

 

Crank it up!

Science question: You’re driving and you have the music on; something good and loud, like the Who, We Don’t Get Fooled Again, what is the decibel level required to drown out the voices in your head? This is not rhetorical people; I need the info. Over the last week so many f-ed up things have occurred that I truly believe only a heartfelt, drug inspired 70’s real rock song could block out the noise. You know something you can crank up and sing because you know all of the words and although you know your voice stinks, it completely doesn’t matter. It also doesn’t matter that your windows are down and sunroof is open, you need to let it out. Feel free to substitute any song you like; I just happen to love the Who and the righteous, guttural way Roger Daltrey belts them out. I always see him in my mind’s eye as Tommy  in those jeans and shirtless, with the long curls,  singing his heart out(just to me of course) and well, that definitely helps get the adrenaline flowing. tommySo….please feel free to email me, text me, IM, twitter, instagram, snap chat, call or snail mail me the answer. I need it. You see I drove to work this morning and no matter how loud I made it and how loud I sang, no dice. Still couldn’t block out the noise in my head. You know something is pretty messed up when your kid says, “you probably shouldn’t blog about this one if you know what I mean”. I do. The actual event or events are not always the hardest part to fathom, but the processing, the clean up of the carnage, well that’s where the real work gets done. The carnage here was bloody and messy and no amount of mopping seemed to do the trick.

It’s  fair to say that you really can’t control most things that happen in your life. As those of us know who have been through therapy and/or are introspective in any way, you know that you can only control your own responses to what happens in life and choose the way you want to handle the damage control. These things are always easier said than done, and emotions have a way of clouding judgment.  What happens when things are unfolding before you and you think to yourself, um, why is this happening and now what the hell am I going to do? How does this get corrected? When things occur and the boys are impacted, I feel like I want to shout out “cut, let’s try this one again”.  When things are going on right in front of you and you are processing them it is not easy to step outside of yourself and say, “hmm, how am I going to handle this situation so my children are not damaged, hurt or angry.” These questions are rhetorical. I was meeting with some folks from my Leadership Broward group yesterday (#LB35 #highfive) and one of the team members is gay and he was discussing the parenting classes he and his husband have to take to adopt a child. Parenting classes? What is this thing you speak of my friend? My mind wandered to a place where I thought, shouldn’t basic parenting classes be required for everyone? Shouldn’t basic human decency classes exist? I guess those things are left up to your parents if you have kids the old fashioned way. In light of the events of my weekend, I was definitely more focused on this topic than I typically would have been. Maybe my personal sensitivity to the challenges of parenting this weekend cast a brighter light on our conversation.

It is my opinion that success, in any form, is not only the result of hard work and a little luck but overcoming some obstacle or plowing through some roadblock. People who have it too easy have nothing to grind against, nothing to strive for that requires the type of deep soul searching and tenacity that propels a breakthrough. I feel this way about innovation and technology, the problem solving aspect, but also the resolve. If I didn’t have autism in my life, I would not have learned what I am capable of. I love when people tell me how much patience I have. I think, “are you talking about me?” I spent the first half of my life so impatient and wound up. I do have a lot of patience now, but it didn’t come from anything natural, it came from survival and for the sheer need and desire to be the parent Bryan needed me to be. How could I face my beautiful boy if I couldn’t be kind and patient with him? (Believe me I have fallen off that wagon a million times, and many of you out there have witnessed it).  Autism is a disorder not a behavior. Would you lose patience if your kid was puking, well maybe that’s a bad example, but you know what I mean. An invisible disorder is still a disorder and needs to be treated accordingly.  I’m still a work in progress, for sure. So by now you may be wondering, why are we talking about success and overcoming obstacles when we were just talking about cleaning up an emotional mess?  The thing I guess I’m grappling with is how much is ok for our kids to have to deal with? How much shielding is good, how much is overprotective? Where are the lines drawn and who has the damn manual? Can I get it on my kindle? These questions in my head just beg for seriously loud music.

 

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.