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!

 

Extremophiles Unite!

I have this great daily calendar on my desk at work. Each day there is a new word to learn and it contains a definition and the use of the word in a sentence. Some of the words are really strange and you know you will never use them; others are interesting and fun. We joke about them sometimes at work and try to use them in our sentences. When we do use these new words we think we are very clever!

Over the weekend one of the words was extremophile. The definition is : an organism that lives under extreme environmental conditions. My friend told me I am an extremophile. Gee, just my luck, couldn’t have skinny legs, but this I get!! It was sort of funny because I do not really perceive myself as living under extreme conditions. It’s all what you get used to. I seriously do not subscribe to feeling sorry for myself (exept for my 2 pity parties each year). I feel capable, motivated and focused. But, every now and then you realize that there are extreme conditions present here. Yesterday Jason wanted to come home from school early. This was about his 3rd time at the nurse’s office in two weeks. The nurse lets him call us, what’s up with that? Could you imagine when you were a kid the nurse allowing you to call? And, just for the record, she is not a nurse, she’s an aide at school who stays in the “clinic”. I think they have 2 bandaids and an ice pack. Sometimes it’s a parent volunteer. I won’t tell the school that I’m a juris doctor, I might get recruited!! Back to Jason; something is going on there. He is overwhelmed by his class. The teacher is trying to make a man out of him whether he likes it or not. I truly believe he has some sort of ADD, he doesn’t focus well, and is so easily distracted. Last night I tried to do homework with him. He seems lazy, uninterested in doing well, yet if he gets a bad grade he’s mad. I lost it with him and let him have it both barrels. ugh. He wants me to help him but he’s fresh and stubborn. Then, and this is the worst part, he makes a pouty face that is my face and my body language exactly. Fuck this, payback is the nastiest bitch of all. After a while we got it together and finished up. We have a conference with his teacher on Thurs morning. She’s one tough cookie and she took me down last time. To her credit, she knows him well and made some very insightful comments that I needed to hear. This time I’m bringing reinforcements….

Here’s what I came home to last night. Bryan was having a complete meltdown in the afternoon. Don’t ask my what do I think triggered it because if I stood on my head, or asked him a thousand times I would not know. He is also not emotionally mature enough or adept with language to tell us. Truthfully he may not even know himself. I would bet puberty is the catalyst if not the cause. So when I got home Jason had a nice chunk of skin taken out of the side of his face and a deep bloody scratch on the back of his neck. Just another day in paradise. Bryan was punished and he knows his behavior was unacceptable but he just laughs. And not a nervous chuckle either, a full-blown out gigglefest. I would join in too if it wasn’t so disturbing. Non-stop inappropriate laughter=extreme condition in my environment. I guess I am an extremophile!

It’s a family affair.

So Bryan and the fifth grade class will leave for Sea World at noon and they come back tomorrow night; pick up is at 10pm at school. Deep breaths!!! Last night I took the boys to Target, they both have some Hanukkah money left and they are in search of Legos. Jason wants that Harry Potter Hogwarts Express and it is not out right now. I guess it’s the post-Christmas empty shelf thing. We bought two small Lego sets, a Spongebob for Bryan and  Batman for Jason. In the store I asked Bryan if he was excited for the Sea World trip. He said “yeah”. This is not a bad thing. He either does not have anxiety about it or he is keeping it in check, either way I’m not complaining. Jason, on the other hand, says to me, “Mommy I am worried about Bryan. What if the same thing happens at Sea World that happened at Talisman?” (If you are new to my blog see entry “Lost in Translation” about Bryan getting lost at Talisman Camp). I pulled him aside and told him not to say this in front of Bryan and we could speak later about it. But, of course, it’s right there. I did my best to get on with the purchases and go home. We ate dinner, I packed up Bryan’s stuff, half excited, half anxious. Interestingly enough Earl let Bryan sleep in our bed with us. For him this was a concession but at the same time I know we both wanted to hold him close. For me, a slice of heaven, I can breathe him in and snuggle.

Jason always goes to sleep after Bryan. Bryan absolutely loves to go to bed and you never have to “put him to bed”. Sometimes he will ask me to come up with him but then he is out in two minutes. Jason started telling me that he is really going to miss Bryan. So cute, but knowing Jason it is that he feels what we feel; great for Bryan to go but a little bit tentative in being too excited. This morning Bryan decided he wanted to take a bath instead of a shower. I was happy about that because that means he will let me wash his hair; it is an incredible sensory experience for both of us to wash that hair. You really have to get in there. He stayed in the bath extra long and I am proud that he will be the cleanest, “sparkliest” kid on the trip.

Jason took a shower as he does every day. When he got out he called for me and said he needed to tell me something. He said “Mom I am so proud of Bryan”. I teared up and he said “Don’t cry Mommy, he will have a fun trip.” I told him like I always do, “I’m not sad, it’s love cry.” I kissed and hugged Bryan a few times before I left, careful not to overdo it or get emotional. I don’t want him to think we have any worries about him or the trip. He really seemed ok. He said “I’ll see you tomorrow at 10 at school.”

A little while ago Earl called to tell me the drop off at school went really well.  He said Bryan seemed really excited to go, no tears at all. He gave the aide at school who is going with him all of his stuff and she also is very excited. He said “Daddy, I’ll miss you. Mommy will be pick me up tomorrow at 10” and said goodbye. Growing pains today!!

A day without Autism is like a day without sunshine.

I say the word autism every day. I don’t wake up saying, hey autism or anything like that. It’s just such a part of my existence, my essence that in some way or another it comes out. I can’t even say why, it’s not like I plan it but I guess it is always on my mind.

I work full-time for a great company that provides awesome autism benefits. For those of you not involved with autism, I must tell it is extremely rare. I have “outed” myself at work and have let people know that I am an autism advocate. I have hosted two Lunch N Learns here at work on Autism and so I’ve become the “postergirl” for Autism at work. Funny, I always used to think of myself as a Bryan advocate, which of course I still am, I just think both Earl and I have grown and matured in our need to spread awareness. For me, as I’ve said before I have learned the most significant, the most thoughtful, and the most useful information from other parents. I say parents and not just moms because I am lucky enough to know a couple of great dads of children with autism. (my husband especially) I think most people who know me, know about Bryan, my office has autism stuff in it, my car has an autism magnet and I talk openly about it. I NEED to do this; I feel compelled to share this info with others because it might help someone and the thing is if your kid has autism, you’re screwed. It doesn’t go away and you don’t know how to treat it and no matter what the crazies say, no one else does either. Many years ago, when Bryan was about 3 1/2 we went to a Saturday morning gym class. At this class the kids were in a big play area and the adults sat upstairs on the balcony watching the kids below. It was good exercise for him, but every time they had circle time and he didn’t participate I felt like throwing up. At this point Bryan was getting intense therapy, speech 4x/week, OT 4x/week, PT 2x/week and just wasn’t making eye contact, wasn’t potty trained, and the echolalia was off the charts. (echolalia- the often pathological repetition of what is said by other people as if echoing them-not my definition, belongs to merriam-webster). He couldn’t converse with us but could recite a whole episode of Blues Clues or repeat whatever you said to him. So on these Saturday mornings I sat next to a woman who was a high power executive at a consulting firm. She was the bread-winner in her family. This woman’s son is about 2 years older than Bryan. I was like a little bird waiting for a worm sitting next to her. She told me about sensory integration things you could buy, about a woman who potty trains special needs kids, about ABA and just a whole host of things that were well beyond my comprehension at this stage. She was ON IT. I started bringing a pad with me. She gave me her business card and I used it. I think at that point I realized that we needed help to navigate this disorder, and at that point we didn’t even know exactly what we were dealing with, it was a strange and confusing time and this woman could sense my need for a mentor.

This morning I had a meeting at work with someone who I have spoken to a few times but never in an in-depth manner. We had something that we needed to go over and when I was describing something about myself, I mentioned I have a son with autism. We concluded our business and then she asked me if I wouldn’t mind telling her a little bit about my child with autism. She is a first time mom of a little girl, under age 2. She was not having concerns about her child, but she has heard so much about autism and the signs, vaccines, etc. that she wanted some more information. It’s always interesting to hear myself tell the story. What was once a terrifying and heart wrenching part of my life, is now a matter of fact part of my history. So there, I said autism before 9:15 am.

Now you’re talking my cracka lacka language.

When they tell you your child has speech and language delays, you think, ok, we’ll get some speech therapy. Well almost 9 years later we probably could’ve bought a mercedes with all of the money we have spent on speech and language therapy. Not a complaint, just a fact, however I wouldn’t really want a mercedes anyhow. A porsche? I could work with that. The thing is there are always ups and downs with everything. Bryan has truly one of the greatest speech and language therapists now. Her name is Marcia and she is so dedicated to her kids. This woman has super duper credentials (I am a credentials snob admittedly) and she just knows how to get to the kids. She is also incredibly warm and loving and the kids are drawn to her. Bryan ADORES her and so do we. Her give a shit level is so high and I feel such a connection to her and her energy. However, no matter how much we love her and we go 3 times each week, the results are always slow in coming. We know he understands everything we say, but getting him to formulate sentences, ask questions and answer questions is truly the hugest challenge. Recently he has started to speak a lot more. Every full sentence, every question and every credible answer to a question is met with pure joy from us. Last night one of our friends, Chris, came over to watch the Giant game (damn Giants) but both Bryan and I were asleep before he came over. Bryan just a regular night, for me, a very necessary ambien induced coma night. Bryan loves Chris, he is so warm and nice to Bryan. This morning Bryan said “I was sleeping when Chris came over”. Ok, not going to make the grammar hall of fame, but I was so happy. Made my day, spurred me to blog, all good.

Jason is in on it too as well as my sister and Mara, our sitter. When he does or says something new we get sooo happy.  Sometimes you would think we are totally cookoo because we tear up or scream yay for the slightest compound sentence or complete answer. And when he asks a question, you would think they dropped the ball in Times Square! The other day Jason wanted to go on our trampoline after swimming and wanted Bryan to go with him. Jason asked him and Bryan said “First I need to get dressed”. Jason was so thrilled, he said “Mommy, did you hear that good sentence from Bry?” then he turned to Bryan and said “that was a great sentence Buddy”. Priceless. It’s a journey for all of us. On another planet that might be somewhat condescending from a little brother. On our planet, the unconditional love and support of Jason is a bonus better than the powerball.

If you are wondering, “cracka lacka language” comes from Madagascar 2. The Zebra, Marty, is played by Chris Rock ( I loooove Chris Rock). They are in Africa and he discovers other Zebras, which he has not seen before. They ask him to join them running on the plains and he says “now you’re talking my cracka lacka language”. If your children are younger than 10 and you don’t know that, what the heck is wrong with you?

A Chuckle and a Tear

Introspection….

I never really read blogs before I started blogging. From time to time an interesting autism one might catch my eye but truthfully I just wasn’t hooked into the whole blogosphere. Now I read a few blogs on a regular basis and I love to read people’s perspectives and observations, particularly on day-to-day life or autism parenting.

When people have asked me, what is the point or focus of your blog I am usually at a loss for words (shocking, I know). There is a purpose; to let me get out some of the stuff I have bottled up. No, it’s to memorialize some of the feelings I have so I can track progress of the family and me. No, it’s to let people who care about me see the realities of a family with autism. No, it’s to keep a diary of my life for my kids. Ok it’s about all of this stuff but really what’s best about it are the comments, subscribers etc. Who knew anyone really cared about this stuff? I have gotten some really supportive and wonderful emails, messages, etc from people near and far.

I am always so pleasantly surprised when I receive comments from someone who I do not regularly talk to or who may not know me well or at all. Sometimes I feel like they must think I’m nuts but I guess that’s the thing, if you open the door, stuff comes out and you can’t or don’t want to control it. The people connection is the thing that I guess I am after, after all. The support from other people, whether they can relate or not to my ramblings, propels me.

I have a terrific friend/colleague/confidante at work that helped get me set up with the blog. I had never even heard of wordpress before. She gave me a gentle nudge and is incredibly warm, true and loyal. She said when she reads the entries she always has a chuckle and a tear. WOW. That is powerful because I think that sums up who I am and what I’m doing. My life is a chuckle and a tear because laughter and crying are really my coping mechanisms

Woo hoo I got the Indian

I have a serious passion, yes, passion, for milk duds and tootsie rolls. I made the mistake of telling my work group about this. So, after witnessing the meltdown on Monday ,one of the guys in my group, who is really terrific and supportive, brought in a bag of Tootsie Pops. At 8:30 I busted open that bag and had an orange tootsie pop. (no this was not my breakfast, just a mid morning treat). My wrapper had the Indian with the bow and arrow. That is supposed to be good luck if I remember my elementary school fictitious luck stuff correctly. Perhaps my luck is changing. I have a lotto and powerball ticket I bought on Monday, but today, with the help of my Indian, I may need to go get some new ones. Happy Day!!

What’s really ironic is that I’m not religious but I see and feel all of these signs or divine interventions. Here’s an interesting story for you. Each year lots of Israeli folks come to Florida to spend the holidays. About 3 years ago friends of ours came down from NY to spend Passover. They stayed at a beautiful hotel in Miami, on the beach, and there were many Israeli folks visiting too. The hotel caters to those observing Passover and it is a nice combination of vacation and celebration. We went down for the day to visit our friends and spend the day at the pool and beach. Our friends rented one of the poolside cabanas and they have two boys and we all ate lunch together and had fun. Mid afternoon our friend, Lloyd, and his older son, and my family headed down to the beach to fly a kite. Bryan was not interested at all in the kite. Instead he wanted to go into the ocean and swim. Lloyd is a great swimmer and he went in the water with Bryan. Lloyd has been very involved with Bryan since he was born and is very accepting. In the water next to them was an Israeli family playing with a volleyball in the water. There were two men and a few teenagers. Bryan swam over to one of the men and he started throwing the ball gently back and forth to Bryan. Bryan also was clinging to him and swimming with him. They seemed drawn to each other and truly enjoying each other’s company in an easy, natural way. This man looked at me and said “it’s ok” because he could tell I didn’t want Bryan to be imposing upon him. They played for a while, at least 20 mins. Bryan had his arm around this very tan man with a big gold Jewish star. After a while the man got out of the water and told Lloyd and me that he had to get changed for his flight back to Israel. Then he hugged me and looked me in the eye and said “Your son is the same as mine”. And just like that we shared a moment of autism/parental understanding. And guess what, he left and I sobbed. I felt as if an angel had touched my life. Between this and the camp/airport encounter this summer I wonder if Bryan has someone looking over him. Since I eat so many tootsie rolls, perhaps it is the Indian with the bow and arrow. Good rationalization to have another tootsie pop.