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!

 

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!!

 

 

 

Throwing the BS flag

One of the guys I work with always says “I’m going to have to throw the BS flag on that” for a comment or a statement that he thinks is BS. He’s a big sports enthusiast and coach of his son’s baseball and basketball teams so he uses sports type references all of the time. I like this expression and have adopted it. So recently there was an article in the NY Times and a piece on Good Morning America about parents of an adult with autism that used Disney movies and characters as a way to get their son with autism (nope, still not saying autistic) to speak and have conversation. So a little bit I need to throw the BS flag. I am not discounting what these people said or did or their success. Since this young man is now 22, who knows if what he had was not really autism at all. He might have had seizure disorder or something else. The criteria for autism or autism spectrum disorder is different today than it was then. I am not here to judge what another family does to work with their child. After all, these kids come with no instructions, protocol, treatment path, nada. There is no roadmap, damn we are all Christopher Columbus with 3 boats and no captains. However, where I get concerned and where I need to say “please hold” before you all go out and order the 27 dvd box set from Disney is that every kid or each kid with autism is completely different. This is more than just a casual remark; it is profound and it is one of the factors that differentiates autism from other disorders. The quantifiable info just can’t exist. We have 3 other families that we know very well. When we all used to spend time together there were at least 6 kids with autism among us. We practically had the whole spectrum there; a literal Venn diagram of delay disorders. So while I don’t want to throw the BS flag at this family per se, but at the whole, I throw it at the this will work for you too. Not that it isn’t a good idea, but I just feel caught in the chasm between what is good and well-intentioned and what is the cure. Perhaps I am coming off negative. I know it’s a good idea to publicize. I know it’s a good idea to try new things. But I guess more than anything I am of the mindset, if anything looks too good to be true, it probably is and some of these things, methods, fixes just seem to give people the wrong impression. Admittedly, I am biased but I still feel like a disclaimer of sort needs to appear on all of these new stories, not unlike when they advertise meds. This worked for X but may not work for you. Or, this may cause other side effects such as X or Y. I also throw it at the people who say their child has autism but doesn’t. Yes, Jenny McCarthy I am talking to you.
However, I am not cold-hearted and do appreciate the triumph of this family and this young man. It is fabulous to see a kid on the spectrum find his voice, literally and figuratively. I am also extremely happy as a parent that they can find a way to communicate with their child. I think it is essential that we remain open to new ideas, just not to cling to them like they are a magic pill. If you have a kid with autism and you are still waiting for the magic pill, stop on your way home to buy a lottery ticket to pay your bills. Same reasoning. It could happen, but really, what are the odds?

Are you smarter than a fifth grader?

I’m beginning to wonder if I am. Jason is in 5th grade. Now don’t get me wrong, I can do all of the math, science, etc. I am not concerned if I am smarter than him in 5th grade academics, but not sure I am smarter than him in life. So all of the challenges you face as a parent of kid on the spectrum are incredibly taxing and can wear you down mentally and physically. But, the typical kid, with his savvy, his sarcasm, and his ability to push your buttons, well, this requires a different kind of parenting. If your child is a mirror image of you (or me in this case) let’s just say I’m totally screwed. This kid has the ability to demonstrate down to the specific breath every bad quality that I have modeled for him. He gestures, sighs, gets frustrated EXACTLY the way I do. If it wasn’t so dead on, so pathetic to watch, I would laugh or congratulate him on a great impression. He uses expressions to “negotiate” over homework that he hears between Earl and me and I cringe the whole time. So I think to myself, hmm, I have to outsmart this kid. I need to be one step ahead of him in the power struggle they call growing up. There are so many issues here.
I need to get him to do his homework and take pride in his work. These concepts seem to be mutually exclusive yet shouldn’t be. I always cared about my homework, Earl always tells him how he didn’t and regrets it. Nope you cannot impart experience to your kid, we all know it doesn’t work that way. I need to change up the strategy clearly, from threat of punishment to incentive. Easier said than done.
He knows how to play me. He knows where the bodies are buried. Last year he let me know that he needs more attention from me at night and clearly attention equals doing homework together. I am seriously happy to comply. I feel if I spend time with him to show him the homework is important to me, he will try harder. Um, not so much apparently. Instead, it’s become his time to test me.He is so easily distracted and he knows that frustrates me. FOCUS!!!! There is a subliminal how much mommy time is available and how long before I can frustrate her thing going on here? How can I monopolize her time away from Bryan who seems to get all of the attention I want? I know he does not intentionally set out to do this; he is a good-natured, sweet kid. When we read together he holds my hand or snuggles up to me. He tells me he loves me every morning when I drop him off and gives me a warm, sincere kiss and hug goodbye. However, five minutes into reading he says he’s bored. We signed up to do the Reading Promise which is 100 days in a row of a parent reading to a child. The school talked about how you will bond with your kid and how they will want you to go on way past the required time. I even took the book we are reading together on my business trip last week to so I could read to him over Skype. Nope, he is not interested. He sets a timer, we are required to read for 11 mins(one minute per year for kid’s age) and even before the time is up he says he’s bored. Damn cuz, that’s just cold. However, he would like me to spend hours watching him play Minecraft or Sims.
So what’s my point? Well on the one hand I guess I am just experiencing behavior and challenges I have not had with Bryan, due to autism and his inability to communicate in a way that will manipulate me and guilt me like Jason can. It is a revelation in a lot of ways. However, as most of my parenting experiences go, it makes me think about Bryan and his need for attention too. It is easier to put him off since he really won’t complain about it. He is efficient, comes home opens his books and does his work. Autism, at least for Bryan, means you follow rules and homework is done when you come home. You gotta love it!! Last night on the Daily Show (which I love, not just for Jon Stewart who I think is so awesome but I also loved John Oliver all summer) Jon Stewart had on David Mitchell who translated a book by a 13 year old Japanese boy with autism. To listen to David and Jon exchange thoughts about autism and autisms as David said, (I love that by the way) I was touched by the sincerity in which Jon Stewart expressed interest in autism. I know he has been involved in many fundraisers (another reason why I geek out over him). I was also reminded, through their discussion about the boy in the book’s awareness that his autism stressed out his family, that Bryan needs reassurance that spending time with him is valuable too and that he is not a burden, he is a joy. Probably a good idea to watch the Bar Mitzvah video with him again.

Veteran’s Day

No I was not in the armed forces. Unless you are Israeli, which I am not, a nice Jewish girl does not serve in the armed forces. I do look good in green though. I am also not a veteran of what people call the war on autism. I am not at war against autism as those of you who read my blog very well know. While not my first choice of things to have, I have embraced it and if anything I am at peace with autism not at war. But I am a veteran of the battle against stereotypes, difficult behaviors, illogical treatments, staring unlookers, judgmental people. 0000002077_i2
As I mentioned in my last blog our family was asked to speak at Bryan’s school to describe what it’s like to raise a child with autism. Earl and Jason left for NY so it was just me representing the family. When I got to the school I didn’t realize that the presenters were going to be some kids (two students with autism/twin girls that were incredibly articulate and charming), a math teacher who spends lunchtime with some kids on the spectrum, a local parent advocate and the school district’s autism specialist.I also didn’t know the audience would be the entire middle school faculty. I knew I had about 5 minutes to speak and I did not write a speech. I am my father’s daughter and I am fairly good off the cuff. I had some points that I wanted to make so I did mentally prepare. In my head things sounded heartfelt which was the point. When I was done I went back to my seat in the audience and struggled to hold it together. Who would ever imagine that I would be on a stage talking about the ups and downs of raising a special needs child? Certainly not me. I truly can’t believe that this girl, the person who wasn’t sure they wanted to even have a child was up there telling them about what gift it is to have a special needs child. Evolution? Maturity? I felt myself walking down the steps from the stage holding in tears that had meaning far beyond what was appropriate. I literally sat in the chair sniffling and one of the teachers leaned forward and whispered something sweet to me. Actually several faculty members stopped me to say how much they love Bryan. Mommy heaven, pure and simple! I do not get nervous from public speaking but I was so confounded with emotion as I climbed down the steps it was as if it hit me for the first time that I was the mother of a special needs child. If I get outside of my head I am still amazed that this is my life and how much I have embraced this and on many levels I am proud of myself for being able to grow up enough to be Bryan’s mom. He deserves it. I wonder if I had him in my 20s when I was busy going to Fire Island for the summer or taking vacations at Club Med if I would’ve been mature enough to handle this; I honestly don’t think so but it doesn’t matter because it didn’t happen that way. I could lie and say I would’ve risen to the occasion but we will never know so why lie?
In my head and heart I am spinning. Getting the diagnosis or the news, well, it’s heartbreak, plain and simple. Living it day to day is not much different. Each time your child does not do what other typical kids do you feel it, you mourn, you agonize. That’s why I always say it’s like heartbreak. And not the heartbreak you feel when your team doesn’t make the playoffs or loses the superbowl. It’s more like when your first love breaks your heart or when someone you love betrays you. The sucker punch to the gut. You know, the one when you were vulnerable and had your guard down or your head turned. I have often felt over the years that a scab has formed or scar tissue; part of that may be because we surround ourselves with other kids with autism. Then you go someplace and you are with only typical kids, and ripppppppppppppppppp, open wound, call 911. Those days, thankfully, are fewer and farther apart. I am no longer an enlisted soldier in my own private armed forces, I have moved up within the ranks.
But those lows, like most things in life are counterbalanced by the highs. I tried to give the audience a glimpse of some of the positives too. Like you know that feeling when you’ve been married for a long time and you and your spouse are watching a movie or out with friends and you guys get the same joke or you catch each other’s eyes and you say to yourself, ah, that’s why I married this person. The people connection. That little falling in love again moment. When your kid has autism, there are so many little yet big triumphs that you get that sparky feeling a lot. It was pouring on Thursday night and I was driving the kids home from speech therapy. Bryan would typically say, “it’s raining”. So that’s not a big deal because he’s 13. But instead he said, “It’s raining really hard. I hear thunder and I see lightning. I hope it stops soon.”. So you are thinking big deal. Well I looked in my rear view mirror and caught Jason’s eye and give him a little wink and he gave me a thumbs up. We had a moment. Progress, you see. Jason is a veteran too.
Had Bryan alone all weekend. We had lots of activities and he was fantastic. I can say, without reservation, that I truly enjoyed his company. Can many parents say they would enjoy a weekend alone with their teenage child? We didn’t have long talks, but we enjoyed the ease of being together in our own space, in our routine. Bryan reminded to give him his medicine, did his own growth hormone shots (a jewish doctor in the making perhaps? come on, a girl can dream, we seriously cannot have any more lawyers) and just a lot of love, affection, and positive affirmations. On Saturday night we went to a movie, then out for pizza and then for ice cream. When we were at the pizza place they had “Just the Way You Are” on the radio by Billy Joel. What a freaking sap I am. As Billy’s singing, I love you just the way you are, I had such a lump in my throat. On Sunday afternoon Earl and Jason called from JFK to say they were boarding. Bryan asked to speak to Jason and said “Jason I can’t wait to see you tonight.” My whole body smiled from that one. When we heard the garage door open Bryan and I, plus our two dogs, went outside to greet them. Bryan gets focused so he walked right past Earl and went to open Jason’s car door. He said “Welcome home best buddy!” Earl and I chuckled. That was a new one for us, but a great new Bryan-ism. He said it again to Earl and we all laughed a bit. For Earl and the rest of us veterans, the homecomings are the sweetest.

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.

We Don’t Negotiate With Terrorists

I knew the day would come. We have reached the point where Bryan has become the easier child. Now don’t get all excited, he hasn’t recovered from autism, he still has all of his issues, his constant repeating, his getting up early, his limited and often inappropriate communication. But on balance, right now, he’s easier to deal with than Jason, who is fresh (just so you know, I don’t tolerate fresh well at all), spoiled, and just tough. He is clearly going through a phase and looking for attention.
Here’s how it goes.
1. Eating: Bryan is a virtual eating machine. He has none of the sensory issues that many kids with autism have regarding food. He is hyposensitive not hypersensitive. He doesn’t really eat veggies, but he eats meat, bread, cereal, cheese, fruit, etc. He doesn’t care if it’s too hot or too cold, whole wheat, seeded, unseeded, you get the point. Jason is the other way. This turkey is too dry, this turkey is the bad turkey, I liked that turkey last week, but I don’t like it this week. This pop tart is too hot, this one is not hot enough. At dinner the other night we were having spaghetti. Bryan ate plenty. When he was done he was having ice cream for dessert. He prefers vanilla but if we only have chocolate or coffee or mint chocolate chip in the house, he really doesn’t care. Jason however, tries to figure just exactly how many bites of spaghetti he must eat, (this is after he has already ditched the first plate since he didn’t like that sauce and now is having butter on his spaghetti), to get to dessert. After two bites and asking if this was enough to get to dessert, Earl looked at him with exasperation and said “we don’t negotiate with terrorists!” We all laughed, Jason gets us, thankfully, and proceeded to have a few more bites of spaghetti.
2. Mornings: Bryan wakes up too early and that is not fun for us. But he kisses me good morning and he is sweet and gentle now. After he has breakfast, he goes upstairs, and unprompted, picks out his clothes, showers, uses deodorant, brushes his teeth, gets dressed, makes his bed and scolds me to make his lunch if I have not done so. Kids with autism, like many of us but to a greater degree, crave routines and they follow them to the letter. He likes to take baths in our big bathtub on the weekends. He is a little too old for me to see him do this but I walked in on him Sunday morning and he said “Mom, where’s the nail brush?” I was on the phone with my Mom at the time and we both laughed. Jason is tired, and practically has to be dragged up to the shower, still asks me to pick out his clothes, must be reminded 5 times to make his bed, and is always lagging behind. Bryan tries to hurry him along. “Jason get in the shower. Jason make your bed.”
I know you are not supposed to compare your children, you’re not supposed to eat fatty foods either.
3. Around the house: If I ask Jason to help out, like feed the dogs or take them out, he will tell me he fed them yesterday or took them out yesterday. You see where that conversation goes. Bryan does limited chores, but if you give him one he does it. If we ask him to take the dustbuster and use it on the steps to vacuum the dog hair, he does it and puts the dustbuster away. No whining, no fuss. When Mom asks you do it, end of story.
4. Bedtime: Bryan is tired. “Mommy, Daddy, I can go to sleep. Goodnight.I give you a kiss goodnight. That’s it. No stories, no drama, out. Jason, “Mommy come up with me, Mommy please read a story, Mommy I see a monster, and then he makes up a bunch of stuff that I need to call bullshit about. Don’t get me wrong, putting a kid to bed is one of life’s sweetest moments and Jason and I often have some serious “pillow talk” but some nights the drama surrounding it can get old. I love the cuddling, but when he makes up things or pouts or gives me a hard time for no reason, it’s exhausting.

Why does this matter? Well it does if you live in our house. It is important to take notice of the change, the ease in which we now live with Bryan. The future is still unknown, the overall anxiety he deals with is still present, but compared to a few years ago, when he used to beat the crap out of me physically and mentally I couldn’t get my head straight from worry; the peace and the tranquility are welcome friends. For years it felt like he was completely a daddy’s boy. Although he loved me, and knew I loved him, we didn’t have the connection we have now. We walk arm in arm wherever we go. He looks at me differently, the walls are down. I know things have changed, but more importantly he knows. It’s as if he knows he isn’t going to hurt me anymore so he feels better too. He has more control of himself, and who doesn’t feel better when they have more control? On Saturday I was in a store with the boys shopping for clothes. Bryan and I were walking arm and arm and Jason said, “Walk with your arms around me Mom, not Bryan”. I said “I have two arms, one for each of you” and he said “no, just me”. We’ve never had that before.