Why do you ask?

Years ago my mother and I laughed about saying “Why do you ask?” to people who asked dopey, nosy questions. If you say this, they get a bit tongue tied because their answer should be “because I’m a nosy person”, but of course no one really says that. My mom was extremely private and never liked the feeling of being interrogated (who does?) and was very defensive when it came to the family, especially Bryan. Over the years I have learned to be more tolerant; trying to put this under the heading of  Isn’t it better for someone to ask a nosy question rather than not asking at all?  I still struggle with this one because people can be very thoughtful or thoughtless, but I try to keep in mind that people don’t know how to handle the unfamiliar.questions2

Case in point-Autism questions like, Is he high-functioning? If you know me, you know that’s a tough one, because it’s not like there is a standard scale. Yep, he’s 4.5 on the high-functioning scale. It’s subjective and no one ever wants to say, my kid is low functioning. It hurts, it stings, blah blah blah.  If I said he was low functioning, what would that do for you? I guess it’s better than people saying “I’m sorry” which they can do when you say your kid has autism. What the hell is that about? The first time I heard that one I have to say, I was completely shell shocked and speechless. I am never speechless. However, people don’t know the right protocol unless they have a kid with autism, so they are trying. Take the good with the bad, I tell myself. For me, some days I am patient and understanding, some days not so much. You get it.

Moving on to what’s in my mind, the impetus to blog. Yesterday was Mother’s day. This was the first Mother’s Day without my Mom being with us and the first one since my beloved Auntie Barbara passed away. A double whammy for our family. Recently a new question has come up that makes me want to say “why do you ask?” Every Sunday we have breakfast at my Dad’s club. It is gorgeous and it’s beyond spoiled and each time I remind myself and the kids of our good fortune. So a few weeks ago some woman who knows my folks came over to talk to my Dad and asked how my Mom was doing. She said to him “Does she know you?” and then points to me (literally points) and says , “Does she know you?”Here are the choices for the answer as they play out in my head:

  • Answer in my head:   She has no fucking clue who I am and it sucks lady.
  • Better answer, but not the one I typically give: Sometimes, it’s very difficult emotionally for all of us.
  • Answer I give: On occasion, but not too often anymore.

Any answer is typically met with no response, which is why you want to say, why do you ask? If I say she doesn’t know me, what info is gleaned from that? Sounds mean, but think about it.

I can’t imagine asking this question. Maybe it’s because of Bryan I have heightened sensitivity to weird, nosy questions, or maybe it’s because my mom taught me not to ask nosy questions. I would say this lady was an anomaly but it’s not the case. I am a pretty tough cookie at this point in my life, but people, take a minute to think about stuff!!! Ok so this blog is more of a rant than a blog, but if my purpose is to get something off of my chest and to raise awareness, I think I may be done. Well almost….

Recently I was shopping with my work BFF in Nordstrom; I was buying a gift in the jewelry dept and there were these mantra bracelets. I’m not big on that stuff but she picked one up and said, you have to get this one, it’s so you: “Be true. Be you. Be kind.” Nothing else really matters.  First of all,  the fact that anyone thinks this mantra represents me is enough to make my year, but it was more of something I aspire to be than something I truly am. Of course I bought it and it is a nice little reminder of how I want to be each time I put it on. I am going to be myself at all times, no apologies.  (probably a little scary for those of you who know me well) Accordingly, I offer some suggestions to people when approaching someone who has a kid with autism/a parent with Alzheimer’s/or anyone going through a difficult time/illness with which you are unfamiliar. How about, “how are things going?” How is so and so doing?” and “Can I do anything to help?” That’s it, just kindness.

Always two there are, no more no less. A master and an apprentice.

So I’m quoting Yoda. Does that make me a Star Wars geek? I guess maybe, but I’m really not, I just dig his quirky  little backward way of talking and his intonation. His sayings are clever and provocative. They make you smile just as you say them.  Star Wars has  a significant place in pop culture and I can respect that, for sure.yoda

I am forever the apprentice, never the master, particularly as it relates to Bryan. Recently I had a conversation with a case worker that assists in navigating benefits at work. This man is an Occupational Therapist by education and practice, but he is also a trusted advisor to me. I have been speaking with this man, approximately 2-3 times per year for the last 7 years. He knows all about Bryan, his challenges, his needs and his progress. Another example, for sure, that it truly takes a village to raise a kid with autism. So this man helps me to navigate the available benefits and based on our discussions and his probing, we talk about what Bryan may or may not need for the upcoming year and he translates that into credible recommendations for assistance. One of the benefits of this benefit (ha!) is that this man really tries to understand who Bryan is, although they have not and will not meet, and tries to understand my philosophy in parenting Bryan. He can gauge progress by asking pointed questions the answers which reveal  growth or deficiencies. He forces me to not only think about what we are focusing on now, but the 3-5 year look ahead. Both are necessary and practical, yet stir emotions. Bryan will be 17 this month (there must be a math error) and it’s exciting to see what he can do now and where he can go. So I was describing to this man all of the independent functioning Bryan is doing and all of the great things he can do at home, at school etc. However, and this is the great part, there is always more. Always more to be done, always more to implement, always more to learn. He made two great suggestions. He knows Bryan is very visual, as are many kids on the spectrum, and I told him that Bryan likes a written schedule and also loves his phone and ipad. He suggested we add all of his plans on a google calendar. Duh, I use it all of the time, why didn’t I think of that??? Bryan will love that. So easy, so simple, yet so smart.

Another thing he and I talked about was Bryan’s use of money. At school he has personal finance aka math and he loves it. My caseworker suggested getting Bryan a prepaid debit card so he could pay for things and learn how to use the debit/credit machines. Another fantastic idea, all geared toward independence. My most favorite thing about talking to people who work with or are parents of kids on the spectrum are just these little tidbits we can share. It’s never the big things; we don’t miss those, but those small incremental wins are so fruitful. The student, grasshopper, apprentice in me is awakened by these suggestions and now I’m focused again on the possibilities. Bryan came home from school a few weeks ago and told me he is now going to FAU on Thursdays, “with the big kids”. He was very proud of himself and I knew based on his sense of urgency that the school told  him to make sure he told me. It’s not the rate of progress that matters, only the direction. So much behind us, yet so far ahead. Two weeks we went to Disney, a request by Bryan in celebration of his upcoming birthday. I like Disney but have been there many many times (incidental benefit of Florida residency) and he used to have tremendous anxiety there, even though he loves it. He was not anxious at all. He was over the moon. Jason and I shared a few quick “look how happy he is” moments when observing Bryan. So we decided to go on the Speedway at the Magic Kingdom. You know, those seriously old cars on a metal track. Jason went on his own and I went with Bryan. In my head I really wanted to see how he could navigate the car. He was fine with the driving part, as I knew he would be, but he was so distracted by people; nope not ready for real driving  yet. Years ago I would have panicked that this means he won’t be able to drive. Now I know it just means he will not be driving anytime soon because he’s not mature enough to focus on the road without the distractions. Bryan’s sheer presence reminds me that there is always plenty to learn if you are willing to be a student.

 

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!

 

Tempus Fugit

IMG_3295So many things going on in my brain right now that I feel compelled to write. This week has been filled with so many emotions and while I know that it’s normal in many ways it still takes a toll. I started out wanting to address something that I’m so proud of with Bryan. He has really taken an interest in social media and loves to post both silly things, like I just shaved or cut my nails, to really sweet and meaningful things. In March we were visiting LA and we had dinner with some of our cousins. While waiting for the whole group to arrive, I was sitting on the couch with our cousin Dani. Bryan instantly took a photo of us and wrote “I love these two beautiful ladies.” At that point if he wanted soda or dessert or anything else I might have limited, well he had me. This week my beloved, adored Auntie Barbara or as the kids call her Auntie Bubbe passed away. She was quite ill and on some level we knew this was coming, but she miraculously kept surviving trips to the hospital so I know for me I was in complete denial that this would actually happen. As with the  rest of the family, my boys were heartbroken. They loved Auntie Bubbe with her warm and engaging style. She always greeted them with great interest in whatever was going on with them. Jason’s Bar Mitzvah was a  year ago. She loved to needlepoint and she made Bryan a gorgeous Talit cover for his Bar Mitzvah. She wanted to do the same for Jason; but knowing how ill she was she was afraid she would not be able to or be there for the day. About 2.5 years ago she sent Jason and me to a local needlepoint store that had many Judaica patterns. She asked me to take Jason to pick out what he liked and the sales lady, like any store she frequented, would know Barbara Henschel and would get all of the yarn and things needed to complete the project. I am proud to say Jason thought this was the coolest thing. He took his time and picked out an extremely colorful pattern. He was so interested in the fact that she wanted to do this for him and that he got to make a selection. I am truly happy to report that not only did she complete this masterpiece, she was at his Bar Mitzvah to share in our joy. So of course I got off topic a bit. Bryan was unsure of how to express his grief. He kept telling me he was so sad about Auntie Bubbe. You see she just had this way of making you feel good and special, and he felt it too. She talked to him with respect and warmth, and he responded. He wrote a little note to her saying “rest in peace Auntie Bubbe, I’m so sorry you died” and posted it on Facebook. I was a little nervous that my cousins might not like it or feel it was inappropriate. They did not. They love, like and understand Bryan and they found it heartwarming. They laugh with him and they just embrace all that is Bryan.  They can get frustrated and annoyed by him too but they don’t criticize or judge him in any detrimental way. They support me and my life and let him know that he can just be him. Is there anything better? Unconditional love is never to be taken lightly.

While not a new concept, I am luckily constantly reminded that family is everything. For Shabbat dinner we were gathering at my cousin Ben’s house. It felt like a combo of Shabbat dinner and private Shiva. I had recently come across a letter from my grandfather, our beloved Pop, and decided I would bring it. Anything and everything about him always electrifies us as a family and when Bryan and I arrived I shared it with my cousin. In typical sibling/cousin form, we joked about who had more letters or stuff from my Pop and he busted out a couple of beauties and the emotion filled laughter and tears that is and should be Shiva. When the others arrived we continued this laughing and crying and loving. Bryan was right in the mix. While he was a bit irritable and tired from a long week too, my delicious cousins/more like nieces, were all over him making him feel special and appreciated. We stayed until after dinner but with all things Bryan, we left early. He always has an exit strategy and I have learned to comply. I must admit I was exhausted too from the week and wanted to crawl into bed. I got home and while so so so tired, I could not easily fall asleep. Reflecting on the week and the life and love surrounding us I was weirdly happy. Certainly not happy that she is gone, but happy that she had such a huge impact on my life and her love that is here with me each day.

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!!

 

 

 

Nice try, Mom

I have not blogged in a very long time. I suppose it’s a combination of distraction, lack of focus, lack of material worth blogging about. I think on some level the need to share about Bryan has slowed down. Some of the issues that we faced when he was younger, the constant worry, craziness and delirium which is autism has not gone away but has diminished in some ways. Bryan just got home from his 3rd year at Camp LeeMar. He goes for 7 weeks and this year he was in the “seniors” group. How is my boy in the senior of anything? To translate, at LeeMar this means he is in a cabin and not in the main building, which is like a dorm. A cabin, with AC. Yikes. At this camp they do all of the things typical kids do at camp but they also have academics and speech. Kind of the best of both worlds. He came home tall and thin. When he was away I was not really thinking about autism too much. I don’t really think of him in those terms anymore, it’s almost like it doesn’t fit exactly right. When I think of Bryan and his autism,  I think of the 7-9 year old Bryan pinching,  screaming and not really communicating effectively. I had a shock to the system last Saturday. I went to the open house for a music program for special  needs kids at the School of Rock. I am a huge supporter of this program and participated in some of the planning for the new curriculum. The folks there are so eager to work with our kids and to make the program a success; which I know it will be. There was a young man  at the open house who is a little older than Bryan and I have known for years through Parkland Buddy Sports. He was sitting on a chair and his behaviors, talking a little to himself, his mannerisms, all of a sudden I felt like I was hit with a brick. OMG,  Bryan is coming home and he still has autism. If you are not an autism parent you will think I’m insane. What do you mean he still has autism? It’s not like I ever thought it went away, but when  I think of him I don’t think about autism. I just think about Bryan. They are not separable in reality but they are separable in my heart. The only analogy I can make is that when I think about Jason, I think about him and his personality,not any of his “behaviors”.  So sitting at this meeting it just jolted me to the fact that Bryan is coming home and I will now be back in my world of friends, supporters and community which is autism. It’s not a bad thing at all, just a reality check. 

Bryan is doing great. He communicates pretty well now and can have a fairly decent conversation. I would say the toughest day to day challenge is getting him  to stop repeating things over and over and calming his anxiety. Piece of cake! The maturity, the coping skills have increased dramatically. Yesterday was a huge day. We went bowling after lunch,Bryan, Jason and me. I have taken the week off from work to spend time with them and it’s been a treat for me. If you are a full  time working Mom, which I am, a staycation with the boys is like a bouquet of roses, each day a different one blooms and shows you something beautiful, and expensive!!! Ok, back to the bowling. I am not a dopey mom. I know the only reason they are going bowling is to get to the arcade when we are finished. No bowling, no arcade! We agree to bowl one game (if you are wondering why take them at all, you have never spent a summer in South Florida where it’s 100 degrees plus 100% humidity). I am the 3rd bowler and after each of us go, we say things like “good one”, “nice one” and then Bryan says “Nice try, Mom”. So appropriate. I have that warm feeling inside knowing that he is with us, in the moment, participating. Jason and I share our secret knowing smile when we acknowledge a “Bryan thing”.

We left bowling and went to Publix. We came home and went to middle school orientation for Jason. I could write 3 blogs about that. We went to each of his new classes and by the 3rd period both Jason and I started to relax. We didn’t realize that were going to go meet each teacher and essentially follow his schedule. Bryan was not happy; he didn’t know either that we were going to do this and the unexpected plan was a little tricky for him to navigate. The 12 year old Bryan could never have handled this but the 14 year old Bryan was able to hold it together. It almost went south a few times but he has better coping skills now. He also recognized that it was an important time for Jason and quite honestly, that means the most. 

Jason never ceases to amaze me. He never once suggested Bryan should  stay home even though he knew it could be tough for Bryan or potentially embarrassing. Only once or twice did Jason say to me, please ask Bryan to be quiet. Jason’s true and pure acceptance of Bryan for who he is represents one of the best parts of my life.

I am easing my way back into blogging, autism and all things middle school. Note to self: after school supply shopping pick up a new bottle of Citron Vodka.