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!

 

Ogres are like onions

shrekIf you have seen Shrek, you know what I’m talking about. Ogres have layers. Onions have layers. Time to peel back and examine my thoughts over the last week. I almost titled this blog Working the Fan Club, Part Deux, but just couldn’t do it. Bryan had a really great Thanksgiving, that is autism parent speak for we had a really great Thanksgiving. Sometimes we just don’t know how much progress Bryan is making until you see it on other people’s faces or in their comments. We went to my cousin’s house for Thanksgiving. We had gone there two years ago too. To us, Bryan is always making progress, but to qualify or quantify it is difficult for us. It’s like you know your kids are growing but until you see the high-water pants, you really can’t see the changes or at least they’re not obvious. The thing is there are layers to autism and I think about where Bryan is all of the time. The hard part is that it’s all relative, and sometimes you need someone to remind you that your or I should say Bryan’s relative place is pretty damn good. On Thanksgiving, at my cousin’s house, I barely heard Bryan. He was there, of course, and ate, of course, turkey and soda, as promised, but he wasn’t extraordinary. In fact, his behavior was quite ordinary. He played upstairs with the other kids, he rough housed with the other boys, his teenage cousins, and played video games.  A few of my cousins, unprompted by me (which of course is the best part) made a point of letting me know how well they thought he was doing. They reminded me of how tough it was for him to be patient, be quiet, enjoy his day just two years ago. Two years ago he was so anxious about going home, eating, dessert, etc. This year, he was there, but he had matured. It is not possible for me to even attempt to describe the emotions associated with these comments. Everyone loves to hear that their kid is doing well or behaved nicely. When someone acknowledges that your special needs kid behaved like a typical kid, well you feel great, but you also feel guilty. Somehow I can be incredibly happy at the same time feel ashamed. Is the goal to be typical? No it isn’t, but to have a fun, unremarkable Thanksgiving from the autism perspective, I’ll say it’s a triumph.

The other night I was up in Bryan’s room with him at bedtime. We have our little private things we say. We do movie lines together from Shrek and the Incredibles. I know you are not supposed to encourage the kids with autism to use “scripted” language. However, these are our private jokes, our goofy moments when we are mother and son just sharing a cuddle and a smile. The thing about parenting a kid with autism is that you are truly always guilty. Shouldn’t you be working on language and reading comp all day ever day? Shouldn’t you force him to answer questions in complete sentences every time? Well I say no. I am allowed to just be his mom. I am allowed to just love him as he is and not have to work on him all of the time. I read somewhere that it’s a good sign of trust if you and your child have some sort of private jokes or signals. I have this with Jason and it’s very natural. I realize that my little movie line sessions with Bryan are the same. To lie in bed with a giggling Bryan is a great joy.

Recently there has been debate about Autism Speaks. Apparently one of their founders made some comments in an editorial about how autism is an epidemic or at least it should be treated that way. One of the board members of Autism Speaks quit, basically stating that Autism Speaks quest for a cure negates the value of people with autism as they are. This is my interpretation of what happened, not literal at all. On the listserv I participate in there has been great debate about the different perspectives on this and Autism Speaks. Are we saying we want a cure equals we don’t think our kids have value as they are? Is there really an epidemic here or are we all just not “accepting” people with disabilities or people that are different? I don’t think these concepts are mutually exclusive. Working toward a cure may be a bad way to look at it, but looking for medical assistance to make someone’s  life easier is certainly important. Equally important is to accept people with autism the way they are. It’s just not black and white and what really bugs me is that people with autism and people who support autism are at odds with each other about the proper approach. We need research, we need treatments, we need community support, we need it all. We need to embrace all of the things that are possible medically, emotionally, etc. We need to support each other and not judge each other’s support for various treatments, methods, etc. So when you peel back the layers aren’t we all the same in the middle?

Working the Fan Club

?????????????????????????????????????????????????????????????????????????????????????????Blah blah blah Thanksgiving. I know it’s the best holiday of the year, not religious, for all Americans, etc.  I love the traditional Thanksgiving meal and all it represents in terms of giving thanks and appreciating all you have. For many special needs kids the holidays can cause a lot of anxiety. What is expected of me? I feel like that question is on Bryan’s face very often. Crafting an appropriate response  is the essence of communication. Am I supposed to respond? What exactly are you looking for? Bryan always knows a response is required but the kind of response required can be difficult for him. At holiday gatherings  people are often uncomfortable; there are heightened expectations about behavior from everyone. For me, I try to work on myself regarding Bryan and not worry too much if he is anxious, he is a young man now and for the most part he can hack a few hours at a family event. He tells me every day where we are going for Thanksgiving. We are going to my cousin’s house and he is sooo excited. I asked him what do you like about Thanksgiving. His response, classic Bryan, was “turkey and soda”. Love it! Truthfully Bryan will always be focused on food, but more importantly he will be focused on family. He truly loves when we are all in one place, and he feels the love and knows genuine, heartfelt warmth when it’s impressed upon him. Often kids with autism, particularly Bryan, use associations to communicate rather than actual conversation. What’s the difference? Well if Bryan sees someone he knows he will tell them the last thing that they did together. For example, if he sees some of my cousins he will say, “you came to my Bar Mitzvah”. That is Bryan speak, for hi, how are you? I love you, I miss you,I acknowledge you. You see the conversation starters are not easy for him. However, what is more delightful than seeing someone who greets you with something relating to the last time you saw each other? The great thing about my family is that they dig it. They love his little quips and his trips down memory lane. They embrace his uniqueness and we are forever grateful and humbled by it. To know, as a parent of a special needs child, that your family holidays are a safe place for your kid, well that’s truly something to be thankful for.

Years ago we were at one of my cousin’s house for Break the Fast on Yom Kippur. Bryan was probably around 8 or 9. They always had a ton of people over and it was good for us because there were so many kids around it felt warm and secure for us and the boys. Bryan decided to go swimming in his clothes. Some of our family was very distressed by this and gave us some crazy looks. What I always remember about that was my cousin’s teenage kids. They laughed and joked about it. They did not do this in a teasing way, but more of an appreciation for his cleverness to get in the pool and sort of avoid holiday stuffiness. I was a bit stressed at the time but looking back on it all I can do is think, wow, he would never do that now, he’s grown a lot. And for the kids that were there, well, they just love him for being Bryan. At our celebration next week a lot of those same kids are coming in from college or getting ready for college. They have matured, moving on to the next natural stage of life. While I admit I absolutely love hearing about their new adventures, new friends, and life experiences, it always stings just a little bit. Somehow that, what will Bryan get to experience is always stuffed down there somewhere and I have to stifle the urge to let it surface. I remind myself, that his path is his path and we just have to take it slow. Perhaps a few holiday cocktails and a few good laughs will ease the way. Bryan, however, will not be worried about anything except dessert and what time we are going home. Happy Thanksgiving!

Checking my resolve

2013
I am not big on New Year’s resolutions because I make resolutions all year long. Every day to me is an opportunity to improve on something, to start new, to dig deep, to get moving. I am always resolving to lose weight, eat healthier, exercise more, like everyone else. That is the first layer. Then I have my next layer of resolutions. I will be a better mother; more patient, more fun, more of the kind of mom that laughs off extra laundry and plays board games or wii all night. Ha! The kind of mom that creates fun speech games for her special needs child and thinks of creative ways to get her kids to eat veggies. Ok I’m full of shit, but I do mean, intend or resolve to do those things. I always intend to be a better wife too. Remember those commercials… I can bring home the bacon, fry them up in the pan…. and wife is in some hot outfit? And by hot I don’t mean an old grateful dead t-shirt and the sweats you bought right after you gave birth because they were nice and loose. Husbands yearn for the garters and thongs and we just drive home from work and see sweats…but I do resolve to do better!!!
I have not worked since December 21. I was worried that this time off would be bad. I know that sounds weird but Bryan plus no schedule usually equals disaster. Surprisingly enough, he has been “wonderful”. He has had his moments of anxiety, but he too has resolved to do better. Bryan, like most of us, will do better when he is doing better. He is destroyed when he thinks you are upset with him. But, because I keep telling him how wonderful he is, he is behaving wonderfully!! Am I shrink or what? Actually it’s a mix of positive reinforcement, maturity, excitement for his Bar Mitzvah and a break from school. Any other reason is all a crap shoot. Any way or any how it’s happening, I’m all good with it.The last day of 2012 I woke up with a migraine. The first day of 2013 I woke up with a migraine. I took my meds and got on with my days. I read nothing into this except that modern medicine rocks.

i have a dream

mlk

I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident: that all men are created equal.” To me equality equals respect. I can’t imagine anyone, particularly parents, who was not moved with great sorrow by the senseless shootings at Sandy Hook Elementary School. As the facts were revealed I am certain every parent and every kind hearted empathetic person learning of this news felt a pit in their stomach. Like most overly reported news I wanted to watch and didn’t want to watch. I did watch a lot however. Our boys did not ask a lot of questions and I was both surprised and relieved by that. Can you explain something you can’t even make sense of yourself? On Sunday night I was putting away laundry, not my favorite task, but a necessary event. I had the TV on and the Vigil started. I am not a very religious person but I was so overwhelmed with pride as an American to see so many faiths share the same venue. It seemed so simple in so many ways that everyone’s faith should be represented; yet religious beliefs and persuading others to observe your faith have been and still are the subject of wars and conflicts all over the world. Here in this small Connecticut town we had representatives of almost every faith I know of sharing a stage, chanting or reciting what was meaningful to their faith, without any negativity, hatred, or violence. I want to take away from this the possibility of true tolerance and coexistence.
Today I was flying back from Jacksonville to Ft. Lauderdale with my boss. The plane was overbooked and we knew every seat would be filled. My boss was on the aisle and I was in the middle. One row ahead, across the aisle from us at the window seat was a young man that clearly had some form of autism spectrum disorder. If you have a kid with this disorder you can spot them a mile away. There was no one sitting in the middle between him and a very nice man on the end. The young man, whose name is William, was loud. I asked my boss if he would mind if I switched my seat to sit next to William. I wanted to make sure that no one else would sit next to him, fearing some sort of unpleasantness. I sat down in between William and the other man, whose name is Bruce. (they were not together). William was warm and engaging but was definitely inappropriate in his loudness and some of the things he said. He told everyone we were best friends and asked to be my facebook friend. He told me he was from NY and that he was a NY Giants fan. YAY!!! The flight was about an hour. He hugged me several times and we talked about his family and that he is 20 and he wants to get a job and a girlfriend. He was going to get married someday and invite me to the wedding!! People were looking at me like I was so nice. I have my good days but I am not overly nice!! I had a few thoughts floating in my mind:

1. I hope someone would be kind to my son if he was able to fly by himself.
2. People, no matter what their disability, must be valued and respected.(the man next to me was such a doll; he engaged with William and was kind and caring.)
3. Nothing gives you perspective like innocence.

Mother of all days…

Everyone knows tomorrow is Mother’s Day. It’s a day to let your mom know you love her and appreciate her. One of those nice made up days that you must respect and deal with or you’re a shit. I love my Mom, she knows it, but I am perfectly happy spending a day, any day, letting her know she is not taken for granted.

As far as my own motherhood goes, I still, after 12 plus years of being a mom, thinks it is so truly amazing to be a mom. The unconditional love and trust of your child electrifies your life like no other thing on this planet. When you hear “Mom, I love you” from a precious gift that you gave birth to, you are whole in a way you could never have even imagined. Funny thing is that I didn’t really like kids all that much before I had them. I think I was afraid they would be too noisy or it would be too much of a commitment. How crazy is that? Stinking crazy!!! Now I embrace motherhood like it’s a girl scout badge that I have earned from hard work and determination. Let me tell you how mommy-ish I am, I have even considered getting a mini-van, the ultimate symbol of a mom. The problem is cranking the dead tunes or listening to Howard Stern in my mini-van, so counter intuitive.

Some years we spent going to the beach, or brunch or just letting me sleep in for a lazy day. Other years I met some friends and we had the “going out and drinking” kind of mother’s day. They are all good because at the end of the day, you tuck those little ones, or not so little ones, into their bed. I love to check on my boys when they are sleeping and touch them just to make sure they are breathing and ok, like when they were infants.  I love just to hear them breathing and smell their yumminess. Funny how some of the worst and best part of being a Mom are the smells!!!

This year we are going to be very low-key. Dinner out with all of the family and perhaps some small gifts, just tokens of appreciation and thoughtfulness. Earl is playing softball in the morning. Although all of the wives/moms protested, it still remains a man’s world. Payback on father’s day!!!

Having a special needs child does challenge you in a way that other mom’s do not experience. I often see mom’s of typical kids and have thought, damn they have it easy. Everyone has issues and problems and all kids challenge you but it is different. I have one of each so I see what the difference is. Jason is all about “watch me’, “see me”, that is what he is supposed to do. I am proud and watch him gracefully navigate social situations, school and life. Bryan makes me earn it; I must be on my toes, advocate, think long and short-term, and innovate. I must dig deep to my core and provide love and patience and respect when I’ve got nothing left to give. But the triumphs, well they are sweeter than words.

 

29 years of a missed Valentine

My Pop, the beloved Victor Henschel, died 29 years ago today on Valentine’s Day. The irony of losing the sweetest grandfather/father on earth is not lost on his grandchildren/children. For years we did not celebrate this day in the usual jovial way, even if it is a made up commercial holiday. For years just hearing the date was way too painful to get happy. However, our Pop would not have been happy with us being sad thinking about him. He was a man who loved life, and loved his family with all that he was worth.

A few memories are really fitting today. When we asked him how he was, he always said “super!”. He was afflicted with severe psoriasis but although this disease was at times unmanageable and debilitating for him, his sunny and bright disposition was never affected. As a grandchild this man represented love in its purest form. He never raised his voice, he always laughed, and told us funny stuff (dirty jokes when we were too young to get them), took us shopping for a treat and made you feel like you were the most special child in the world. Memories of going to a Knick game, sitting near the organ player, and getting a blue sweatshirt with an orange felt basketball stay in my mind.

I used to love when he would see his siblings. He would cry so hard; he never felt emasculated by his emotions. He wrote the greatest birthday cards on 5×7 index cards in all caps. I still have one and it’s kept in my safety deposit box with all of my other valuables.

I share some special memories about my Pop with my cousin Andy. We are only a year apart and we grew up more like brother and sister. He and I went shopping with Pop in both NY and Florida. Pop always kept things even among his grandchildren. Every once in a while you would get a check in the mail and you would know that some other grandchild got something and you were getting your “true up”. Andy and I still talk about those shopping times, particularly the one day where Pop had rented a white camaro, took us shoe shopping, and told us stories about when he dated our Nana. “Priceless” doesn’t even come close.

This man had great expressions for things. Anything that went wrong that was a lesson for you to learn, he said it “built c-h-a-r-a-c-t-e-r”. It wasn’t exactly spelled out by him but more of an emphasis on the wrong syllable to be cute. He used to tell us when we were kids “nicht mit a hent” (don’t know how to spell in Yiddish) which means “not with your hands”, so we wouldn’t hit each other. There are five of us grandkids and when we would get together, it could get a little crazy. I say it to my kids and I know my cousins do too. He said it with warmth, never with anger. I miss him so much. We all do. We all wish he could see us living close together, loving and taking care of each other. And the kids, damn do I wish he could see all of his great grandkids. There just would not be enough tissues for all of the happy tears!

I do like to think he watches over Bryan. Who else would guide such nice people to rescue him in the woods of South Carolina. And Jason…. he has that sweetness, that pure empathy that personified my Pop. Happy Valentine’s Day. XXX