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!

 

A letter to me.

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

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

 

Fearless

Autism is not easy to describe because it manifests differently in each person affected by it. Bryan’s autism consists of three major areas: communication, anxiety, and impulse control. I decided a few months ago that I was going to take the boys to LA for Spring Break, which was last week. Jason has wanted to go to LA for a long time; something about the allure of Hollywood and the possibility of being “discovered”. Bryan just wants to make sure he is included and is going too.  I’ve been a single mom for about a year now and, quite honestly, this factor never really entered into the equation of going. I am typically a goer and a doer so I just made the plans.

As the trip was getting closer I sensed anxiety from Bryan. I am not surprised by this fact, nor do I really focus on it. Bryan can be completely relaxed about something difficult or awkward, like a school trip or a doctor’s appointment, yet very anxious about movie tickets or going to the mall. Over the years I have learned that it’s waycali2016 better to just ride it out and deal with the behaviors that come than try to spend cycles anticipating things that may never happen. I have also learned that experience teaches you that you can tackle things if you believe in yourself. I think you either try to learn from your life or you don’t. You are either introspective or you are not.

Getting back to Bryan and fearless. I let the boys know that the flights would be very long. I let them know that there will be ridiculous traffic in LA and there will be many long car rides. I let them know that we are going to have lots of plans and lots of fun and that they are going to have to deal with a crazy mommy. They both were excited by the plans and looking forward to the trip. On the flight out to LA I started feeling some anxiety creep up on me about driving everywhere. I don’t like to get lost and I started thinking, am I nuts to take two kids with me on this trip where although I’ve been to LA multiple times, I’ve never been at the helm navigating my way?  Bryan was holding my  hand on the flight and was talking about going to the Santa Monica Pier, our plans after arrival, car, hotel, etc. I watched how he was processing everything and although he was anxious, he was coping. After we got to the rental car and started on our way, Bryan freaked out a bit about the traffic. It took us about 45 minutes to get to the hotel and I realized he was probably  hungry. We checked in, had lunch, and I noticed that he was really taking it all in. He was excited for our plans and although he was very anxious about the drive to Santa Monica (where I did get a little lost and frazzled) and about the day, he did his best to go with it. By the time we finished our day, on the Pier with my childhood friend and her family, plus dinner near UCLA, he was relaxed and tired. As predicted, as soon as we got back to the hotel he went to sleep. Bryan absolutely loves to go to sleep. The next day we went on a tour of the celebrity homes. Bryan’s only real interest in this had to do with the movies that these celebrities were in. He loves movies!!! That night we were going to a taping of America’s Got Talent. Some combination of the traffic, the time of day, and the waiting made us all very irritable. By the time we got into the theater we had been waiting for 90 minutes. Bryan was done. Jason was so excited for the show, but as a veteran of all things Bryan, he knew he was on borrowed time. I watched Jason try his best to calm Bryan. Bryan did his best to watch the show. At one point I looked over at Bryan who was sitting on the other side of Jason and my eyes filled with tears; he was fearless. He was trying with everything he had to calm down. He knew how much Jason wanted to be there and he knew that we were not leaving in 5 minutes. I had a moment where I thought to myself, did I just push it too hard? Is this too much? What is wrong with me, my kid has autism and I’m expecting too much. After a while Bryan was really hungry and anxious. Jason looked at me and said, “let’s just go”. I can’t think of a moment I felt more pride. Bryan tried to cope to please Jason and Jason suggested leaving to please Bryan. The rest of the trip was uneventful in the best way possible.

Typically going home can trigger major anxiety for Bryan. I had braced myself for a very long flight home filled with constant talking, reassuring, and anxiety. Bryan was fantastic on the way home. I have no idea why he was calm when he typically isn’t. All I know is that he successfully navigated a huge trip and proved once again, that you can never underestimate a person with autism. Fearless!!

 

 

 

How low can you go?

neverapologizeAll you people who typically read my blog and reach out to support me, yep I’m talking to you. I need you now. Autism sucks. Yep it does and it keeps on sucking in new and improved ways. A few times over the last few weeks we have gotten calls from Bryan’s new school that he has been physical with staff members. Mostly we have been able to get him to calm down or at least get him through the day. He was picked up once before and it was not good. Today I got a call to come get him. He had to leave, no trying to get him to stay. He tried to bite his teacher and was trying to kick her. Have you seen him lately? He’s big, he’s 5’7″ plus (and not the fake 5’7″ that so many people say they are but are not) and at least 170 lbs. He is broad-shouldered and extremely strong. I had to go get him. I was having a tough morning anyway, I’ve been a bit off of my game lately personally and this just pushed me right over the edge.  We already went once to the shrink to get his meds adjusted but it looks like that’s on the agenda for today too. When I asked him what happened he really is not capable of telling me or at least not capable of telling me now. He is too upset, knows he did wrong and is too anxious. He has trouble expressing complex emotions.  He can tell me he’s sad or happy but to explain what set him off and why he lost control, well that won’t be vocalized any time soon. He will be able to give me info or clues later, but they will not be timely. I felt like such a piece of crap going to get him and listening to them tell me how he tried to attack his teacher. When I saw him I wanted to hug him and kiss him and I also wanted to smack him in the head. Some combo of love and forgiveness mixed with frustration and anguish. As with most autism “things” there is no easy way out, no magic  pill, no “can’t you just”. It has never worked that way and never will. My heart is broken. A child’s pain lives in his mother’s heart. I know I will have to dig deeper, try harder, persevere. I signed up for it and I am not a quitter. The hard part is that my emotions are very raw right now and emotions and action can be diametrically opposed. Why does it seem that stuff happens all at the same time? Why does it always seem like just when the dust is settling and you can see the rainbow the rain starts up again?

We went to the doctor. We have a game plan for now which involves going back to a previous medicine that seemed to hold the aggression back. It’s all trial and error. I feel particularly bad because today is Jason’s birthday and although I have a fudge cake for him, we are not going to be able to go out to dinner and celebrate. It’s best for us to just have a quiet evening in. Jason, now a teenager, knows what happened today and has taken it all in stride. He is so happy for the cake, the cards, and the # 13 balloons I got him last night to surprise him. I think I wanted to get balloons to think I still have a little kid in the house. I was excited last week when he told me he lost a tooth. Yay, still has some baby teeth. I asked him if he put the tooth under his pillow at his Dad’s house for the tooth fairy. He said, “the tooth fairy is bullshit.”.  Yep, he’s 13. I was surprised he didn’t hustle me for  money however. For now, pizza and birthday fudge cake sound just perfect.prescription

Have courage and be kind….

cinderellaThere is truly no end to negativity surrounding people with disabilities. When it is your child, no matter how many times you encounter new people and their reactions to your kid, you feel like you were hit with a brick. Sometimes I shake my head and think, are people really that out of touch? Are people really that insensitive or ignorant? I try to give everyone the benefit of the doubt; maybe they don’t know much about autism, maybe they have not experienced it first hand. Here’s what I do know:  you do not have to have something first hand to be kind. We just saw the new Cinderella movie on Friday. I will admit I was the only mom with teenage and pre-teenage boys in the theater, but Bryan loves all movies and Jason is a good sport. It was pretty good for an old story, (Lauren Henschel-the actress looks very much like you do but not as pretty) and the mom’s message, before she dies (all moms die in Disney movies) is to have courage and  be kind.This may now be my new mantra. I have always been a fierce protector of Bryan but having courage is a good one. I do have the courage to speak up for my boy, to educate, raise awareness, and let people know what is and what is not ok.

Here are some simple rules, as I see them, when faced with the unfamiliar autism spectrum disorder.

1. Do not judge my parenting skills. You have no idea how you will behave if you have not slept well in days and your large teenage kid is screaming and pinching you and his sibling.

2.  Do not judge his future. You have no idea how smart he is, what he is capable of, or where he will land. If you do, call Diane Sawyer and get your ass on TV as a genius.

3. Do not judge him by his disorder, open your mind to his charm. He is not the bad behaviors, that is only a component of him, I guarantee he is 10x smarter than you can ever imagine and is sweeter than sugar.

4. Do not judge his communication skills as the barometer of his level of understanding. Receptive learning is much easier than speaking.

Since I try to learn from every situation, I have learned this. I love autism! It pushes me beyond my comfort zone as a person, it challenges me every day to dig deeper, to learn, to grow and to push. I am where I am in my life not in spite of it but because of it. I know who I want to be with and how I want to handle myself. Thank you Bryan for teaching me the ultimate you can’t judge a book by its cover.

So I say to all of my peeps out there if you can’t have courage to deal with autism, at least be kind to the parents.

2014; brought to you by the letter D.

the-meaning-of-DTomorrow is December 1. The year is almost over. 2014 will be memorable for many reasons, not the least of which is that this is the year Earl and I get divorced. Our hearing is on Dec 16 and then we will be divorced. We are still living together for now and that is a function of circumstances. That D has certainly forced reflection on other D words. The despair you feel in going through a divorce, no matter the circumstances, is ever-present. Fortunately, we are focused on being amicable, if not for our own sanity, but for the sanity of our boys. People are constantly asking me, “how are the boys doing?”. To be truthful, I’m not sure. I have no benchmark, no sense of this, I’ve never had to deal first hand with divorce. Earl’s dad died at a young age, but his folks were still married, and my folks will be married 57 years in January. So basically my response is that I don’t really know yet, too soon to tell. I am a student of all things children related and I have been researching how to minimize the deep impact the divorce will have on the children. I have positive and negative examples all around me. The definitive thing, I’m finding is, how you and your soon to be ex-spouse relate. Model respect and good behavior. Do as I do, not as I say. Jason asks questions and I try to be as honest as appropriate. I tell him we love each other, but our family will be different. Bryan, however, asks nothing. This is alarming. Bryan knows all. He was the one standing outside the rooms when we were arguing, talking, and deciding. Bryan, like many kids with autism, is great receptively. He understands everything he hears. So how do I navigate Bryan on this unfamiliar course? How do I let him know none of this is his fault, if anything, autism bonded us, not the other way around. How do I answer the unasked questions? I have been trying to take the opportunities that present themselves. If we are alone, driving to speech, I tell him the custody arrangement. I tell him slowly and carefully. At night when he goes to bed I remind him that he is loved and precious, and in no way should he feel disregarded. It’s tough. Although he does not say much, he does say “we’re getting divorced.” It’s true, it’s not just Earl and me, it’s all of us. When he says that, it’s like taking a dagger; however, he does need to be able to say it. Bryan needs to be given the language for the situation. He certainly knows the concepts but what to say and how to express it are very challenging for him. He has not been sleeping well. Typically Bryan passes out or announces he’s going to bed, but lately he has been up “exploring his body” oy, and just feeling anxious. Puberty plus autism plus divorce equals delirium for the rest of us. I can’t think of the last good, fitful night of rest. Friday night he wouldn’t go to bed until after 11 and then was up since 3 am. He is not quiet, he is never quiet. He knows he is upsetting us, irritating us, driving us a little nuts. I feel for him; he can’t just say what he needs or wants to. At times I feel defeated, down, depressed. The “D”s of my 2014.

There is always another letter and another year. Looking for my “E” in 2015;to work on feeling empowered and energized.