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!

 

Autism Awareness

One of the great things about autism, and there are many great things, is the way other parents respond to your kid and the way you respond to their kid with autism. This week one of the families we know posted a photo on facebook of their son starting an internship at Sports Authority. I see this family every weekend and to see this photo of their son working in the community, understanding what a huge milestones this is, well you get the vicarious sensation of pride. I took Bryan to music class this morning and met a mom who has a 6 year old son with autism. She is working on a website for autism awareness and our friend and coordinator of the Parkland Buddy’s Sports program introduced us. We sat together and chatted for a few minutes. Her son was friendly and came over and said hi. Bryan was singing on the microphone, summoned me to come over and he put his arm around me while he sang. When I got back to my seat I told her how lucky I feel sometimes that autism gives you the luxury of having the kids grow up in slow motion. At almost 14 I am not “embarrassing” to Bryan (as far as I know) and he is warm and loving. She agreed and told me she wouldn’t trade it for anything. Amen. I have had that conversation with many Moms and the lessons learned from autism far outweigh it’s challenges. But, to get back to the point here, we were at soccer today, and one of the coaches, who is also a great friend, asked if we thought it would be ok to move Bryan up to the field with the kids that really play a game. You see, Bryan has typically been on the field but only with kids that are running back and forth and kicking, not actually playing. There is nothing wrong with where he was, but to me, the fact that the coach, another parent of a boy with autism, and friend, is taking notice of the maturity of our boy, well that just fills my heart. Reach for the stars Bryan, because you can catch one. He and his buddy went to the field and he did really well. While not scoring or dazzling anyone, he more importantly got the concept of the game and was able to hack it. The other parents that we sit with were incredibly supportive too. We all want our kids to make progress, to prove to us and the world that there are truly no limits on their capabilities. The Parkland Buddy Sports tag line is “No Limits” and today, more than any other day, it rang true to me.
During the game today I happened to chat with a buddy I didn’t know. He was waiting for my friend and her son to use the rest room, and he and I started to make small talk. He is a high school student and told me this was his 6th year as a buddy. I pointed at Bryan and said that’s my son, and he said “oh I know Bryan”. He explained how much he has learned from the program and how much he really enjoys the kids, their families and being part of something so special. He also told me he knew Jason. He said Jason told me he can be a buddy because he’s “basically a buddy all of the time”. I told Jason this a long time ago and I guess it stuck. The boy, whose name is Bradley, went on to tell me about how he watches the kids change and grow and he likes to see how they learn. You see it’s everywhere this autism awareness thing.

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Focusing the Lens

autismribbonbreastcancerribbonUnless you live in a place where there is no media, you know it is Breast Cancer Awareness Month. There are pink ribbons and items everywhere and for those of us that are over a certain age, it reminds us to go get a Mammogram and not be complacent about our health. (Just so you know mine is scheduled for November 5). But to me, the interesting thing about this month is that it’s not my month. My month is April. What do I mean by that? My month is Autism Awareness Month which is April. World Autism Awareness Day is April 2 and we light it up blue that day. Our ribbons are a medium blue. So seeing all of the pink out now I am reminded that each of us has a cause that is near to our hearts; either we know someone afflicted by a disease, disorder, or condition, or we are sensitive to those we care about and their concerns.
Raising a child with autism is not in any way like having breast cancer. However, humanity itself allows us the flexibility, the mental space, to care for others even though we have no true sense of what they are going through. We have the ability to empathize, sympathize and offer solace. I work with several women who have survived breast cancer. I am amazed by their resilience and tenderness. I am also amazed how these women often reach out to me to help me when I’m feeling down about autism. So you see, overcoming something or learning how to cope is not one dimensional. Learning to deal with the unimaginable, the unknown, and the unforeseeable may be a secret club, but it’s not exclusive to your plight. I also notice the reciprocity of support, will you support my breast cancer event and I’ll support your autism event? There is a symbiotic effect that is both necessary and comforting. I had a friend who passed away a few years ago from cancer, not breast cancer per se, but cancer of the lymph system. He and I had grown up together and although we were not in each other’s lives on a daily basis we had an awareness of each other’s lives. About a year after Bryan was diagnosed with autism and he was diagnosed with cancer we spoke for the first time. There was an undercurrent to our conversation, an unspoken, did you ever think things would work out like this for us? So during this month of breast cancer awareness I am going to focus on just the awareness part; the awareness of others and their concerns and reminding myself to adjust my lens away from the myopic setting.

Love will find a way

Where to start? So on Sunday I was in the car with the boys and Jason was using my iphone. He wanted to listen to something through my bluetooth. Now at times I am ok with this, but at times I am not. If you want to hear something funny or interesting or some good music, great, but if you want to play Gangnam Style, I’m not on board. I like to keep up with current music, but give me a break. In any event, he wanted to listen to BrainPop which is educational. They talk about a topic and then you get a quiz. The first topic he played was about the legal system. As an attorney I of course found this interesting. The info was objective, factually correct, and informative. He took the quiz and got a 90. Next topic was about blogging. So now I’ve learned that I’ve violated the blogging “rules”. You are not supposed to give your name, you are not supposed to say where you are located, and you are not supposed to put personal information in your blog. Ruh Roh! Too late to turn back now. Ok so this is not what this post is about, but this was on my mind. My blog, my thoughts, indulge me.
If you are a family member or if you were at Bryan’s Bar Mitzvah, the expression “Love will find a way” will be familiar to you. This is the expression my beloved grandfather, Victor Henschel, used to say about solving problems or dealing with what seemed to be impossible situations. I quoted him in my speech to Bryan at his Bar Mitzvah. This very simple expression, this very basic concept, so small, yet so big, has been in my heart throughout the autism journey and seemed the only true way to express the collective in raising Bryan. You see autism, the autism spectrum, autism spectrum disorder, Pervasive Developmental Disorder-Not Otherwise Specified, whatever you want to call it, is murky, gray, opaque. You are on boat without a compass in the ocean looking for the north star on a hazy night. So what do you do, you trust your instincts and trudge on.
This love that I’m talking about has taken so many forms over the years, the love of friends and family toward Bryan. But the love that is touching me today is the unlikely love, the unexpected love, the serendipitous love. On Saturday night we went out with some friends for dinner. One of the couples we were with are our friends Betsy and Paul. Their son AJ is the boy I referred to in the blog “I’d rather live in his world than live without him in mine”. We have known them almost the whole time we are living in Florida since the boys started in Kindergarten together. Betsy and I love to geek out about cool party favors and clever gifts and she gave me a good grade for my work at Bryan’s Bar Mitzvah. She watches the details and so her kudos made me proud! At dinner she handed me a small box which she said was for Bryan but I proceeded to open it. See photo. necklaceMy eyes filled with tears. Such thoughtfulness, such listening skills, such love! My grandfather would’ve cried like a baby for such a gift. Friendship personified. It felt as if she reached in and gently touched my heart. So I will call this the gift of autism. I would never have met them if Bryan did not have autism. We do not have a lot in common on paper. The truth is we have made many friends through autism that would have been unlikely friends otherwise. That is the beauty of it. That which is common can overcome that which is not. This is why I have often said that in many ways I am grateful for having autism in my life. The depth of appreciation I have for some of the smallest things in life is enormous. My friend Renee called me the other day to tell me a story about one of her boys on the spectrum. They were shopping and he had picked out something he wanted to get and then when they got to the register he decided he wanted to go back to get something different. She said, “well you already picked out your stuff”. He said “I’ve changed my mind”. A huge statement/concept/declaration from this boy. We celebrated on the phone like he had cured cancer. To us, he might as well have done just that. We also share what I like to call the humor of autism. You have to laugh. If you don’t you will go insane. Bryan’s new expression is “you’re not kidding”. Not sure where that came from but you can imagine it is appropriate about a third of the time but when it is, it’s pretty funny. There are so many situations when we are together with other families or just alone the four of us that we have to laugh. It’s not that we are making fun of Bryan, we are certainly not, but when you land in precarious situations you try to make the best of them. Bryan’s new thing is laughing at anything that has to do with death. He has been watching ET lately. He picks a movie and watches it over and over again for a while and then moves on to the next. Every time ET flat lines he laughs so hard you’d think he was watching Young Frankenstein or Animal House. A few years ago I was with Bryan in Target in the morning after dropping Jason at Hebrew School. It was early on a Sunday and the place was fairly quiet. We were just killing some time (I can always find something to buy in Target) before Speech Therapy. We were walking down the aisle and a man was coming toward us and Bryan yelled on the top of his lungs, “I don’t touch your vagina!” (at least he said don’t and at least the man laughed). I laughed and told him we don’t say these things in public. Can you make that stuff up? Nope. So you must learn one of life’s best lessons; if you can laugh at your stress or your challenges your ability to cope will be that much greater.