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.

It just doesn’t matter

brokenheartAlzheimer’s disease is a thief. It robs you of your loved one, it robs them of their lives and it robs emotions. I teeter between this very intense reality of watching my mom slip away into just a body, just a tiny version of her former being, to complete denial this is happening in my life; some sort of self protective armor. The problem, to way oversimplify things is, that I do not live like an ostrich so the bury your head in the sand approach not only doesn’t work in reality but has never worked for me. I am a talker, a sharer and an open book. So if I really need to express what I’m feeling now as some form of catharsis, you will need to bear with me.  I go to see my mom every weekend. At first there had been some conversation, little snippets about things in a magazine we looked at it or about the boys and school. Over time there has been less and less and I don’t ask any questions. I learned when Bryan was little that when you ask someone with a language deficit too many questions, it raises their stress level so high that even if they could answer, they now would not. For the last few months I essentially have talked or just held her hand or just took her for a walk. Sometimes we would sing songs because the remarkable brain can still somehow conjure up words aligned with a tune.

In the last few weeks there has been a noticeable decline. Although when I say “hi mom” she still perks up, but not sure if it’s just because I say that or she has recognition. I will say every now and then we still get a somewhat knowing glance. It reminds me so much of the times when I connect with Bryan, particularly when he was small and just the eye contact where the gaze is held for more than a few seconds, communicating an entire paragraph’s worth of info. Over the last few weeks there have been some disturbing physical manifestations going on. No, not the top of mind things like incontinence, we are way down that road already. I’m talking about finding her with a bruised lip or face, her hand swollen, a few scratches on her arm.  I can imagine your thoughts. What type of place did you stick her in? It’s not that, it’s a fabulous place with great care. She has extremely paper-thin skin and has always bruised easily. Her balance is not great so she can slip easily. She apparently has been somewhat defiant with the folks that work there when changing clothes. When the boys are with me on the weekends they go with me to see her. I am proud to say they want to see her and do not shy away from this or make me drag them. Due to some scheduling issues Jason had not gone with me for a few weeks. Bryan and I alone went on Saturday and she had two major bruises and I could see the worry on Bryan’s face. We now only stay about 15 minutes. There were stains on her shirt and she seemed disoriented. There is virtually no conversation and often she does not say a word. She is having more trouble walking, she sort of shuffles,  so we take very very short walks. When we left I was teary and I hugged Bryan and when I looked at him his eyes were filled with tears. “you’re sad because Grandma has a purple face” (clearly referring to the bruise by her eye). I have never taken a bullet, but I can imagine what it must feel like at this point.

Yesterday Jason wanted to go. I gave him detailed prep because I didn’t want to see the shock on his face that I saw on Bryan’s the day before. We found her sitting outside in the sun. Jason did a great job of holding it together and hugging and kissing her. He sat next to her and just held her hand. She looked at him and said “I love you”. He has this tender way of dealing with people and I think she just got it. She didn’t know his name or anything about him but her heart reached out to him. I could see he was happy. She seemed sleepy and detached after that. We left and when we got outside Jason completely lost it. He literally sobbed uncontrollably and of course then I started. Bryan said “you are heart crying because of grandma”.  The rest of the day we kept busy and focused on other things.

My dad really does the heavy emotional lifting. He lost his spouse, best friend and partner in crime. He and my mom have been together since college and they had that kind of relationship we all long for; where the best times you  have are just when it’s the two of you alone. He has had a tough year both emotionally and physically. He called me late afternoon to tell me he found out some more info on things going on with my mom and I literally could hear the pain in his voice. I tried to reassure him that we would get her the help she needed but we cried a little together about how she is declining  and changing and how horrible this is for all of us. That’s the difference between Autism and Alzheimer’s. Autism always presents hope. For Bryan, there is always something new and exciting just around the corner.

After I hung up Bryan came over and gave me a hug. He gets so upset when I’m upset. He is so connected to me emotionally that I wish I could have prevented the tears, for his benefit, but I couldn’t. Jason heard all of this and came downstairs and we had a group hug and kiss and  all just cried. What becomes of the broken hearted?

 

By way of example…

How do you really explain what it’s like to live with and parent a kid with autism? As you know, if you read my blogs and if you have a kid with autism in your life, it is not easy to explain. I often get questions like ,”does he understand ….?”, “is he high functioning(whatever that means)?” “how does he express himself?”  So I decided rather than try to describe what it’s like I thought giving every day examples might be more illustrative. Of course Bryan is one kid with autism and his presents itself in its own unique way. One thing that I have always found interesting are the growth spurts. Not height but functioning. It never seems that one thing happens, but rather a cluster of good behavior, a cluster of good language, or a cluster of independence.

Here goes with the examples, I divided them into categories to keep my train of thought more organized:

Language-When we were getting ready to go to Disney, I talked to Bryan about the rules for the trip. He does well when he knows the rules and I guess managing expectations really works well for everyone. I told him there are 3 rules: 1. No hurting Jason or me, 2. No screaming-side note-Bryan’s most favorite thing to scream is “I love you”. That poses a huge challenge-do you want to say please stop telling me I love you? No but at a lower decibel would certainly be appreciated. Ok and finally, and most importantly to manage anxiety, 3. You do not have to go on any rides you don’t want to. The last one, while conceptually easy for him, from a language standpoint was very tricky. You see, I ask him to tell me the rules, the first two are very easy for him to repeat back. The third one presents all sorts of pitfalls. He has to get the order of things correct and the pronouns, etc. It usually ended up as “If I don’t have to go if I don’t want to on a ride” or some sort of jumbled up version. Hmmm, what am I an amateur here? This needs simplification. The replacement I gave him was “I can choose my rides” or “I don’t have to go on any rides.” Much better, much easier and less stressful for him when I pose the question. It’s more important he understands the concepts, but I do like to know he can articulate them too.

Also with language there are triumphs, while on the outside looking in may appear so small, so insignificant, yet are so huge when language deficits are present. Last night Bryan said he wanted to take a bath. I said “ok, are you going in my bath?” He said, “no I like my bath better than yours”. OMG I had never heard such a thing before. He made a true comparison and used the right language to do so. I almost called his speech therapist but then more kept coming out. He was putting away his laundry and he found some underwear in the pile that belonged to Jason. He took the underwear and went into Jason’s room and said, “Hi Jason, these underwear are yours, not mine, put them away Jason” (ok he’s a little bossy, where does that come from?) Another great use of language. So small, yet so great. I was in our laundry room and folding more laundry and just peeked around the corner to catch Jason’s eye. He gave me that twinkly knowing glance; the one that let’s me know he loves Bryan too and gets it.

Today I was driving with Bryan home from seeing my mom. I was really tired today and a little irritable. Bryan had been sort of bugging me with lots or repeating language and he knew he was making things worse. It’s tough because the more upset I am or annoyed the more anxious he gets which leads to more frustration for both of us. So we left my mom’s place and we were driving home. Bryan said ” I feel overwhelmed”. NEVER have I heard anything like that. I asked why he was overwhelmed and he said because you’re upset with  me. So I thought to myself that I was never so happy to be annoying him if annoying him revealed such a great use of language. However, I did feel like crap that I was stressing him out. We drove a little further and then he said “what is autism?” At this point, I looked at him and said “why are you asking this Bryan? What do you think it is?” He said “I think it’s when I laugh too much.” Not really a wrong answer. Bryan is known for seriously inappropriate laughter. If Jason is mad or I’m angry he starts to giggle. And then starts to really laugh. Sometimes it’s good and makes us laugh too sometimes it’s maddening. I then explained a lot of stuff to him about what I thought autism is, but truly his definition was pretty damn close.

Independence-On any typical day, Bryan will unload the dishwasher. When they are home with me we have to run it practically every day. When they are at camp for 6 or 7 weeks I think I ran it twice! However, the level of effort Bryan puts in is amazing. Last night he loaded dishes from the sink into the dishwasher and went to put the soap in. He brought the almost empty container and said, ” we have no more dishwasher soap.” I told him we did and that it was in a green container and he proceeded to put the soap in and then take the old container out to recycling. He then emptied our kitchen garbage, replaced it with a new bag and took out the rest of the recycling. All of this was done properly, and without my asking. He then made his lunch and yelled at Jason to take his lunchbox out of his backpack and for Jason to clean the litter pan. I had already asked Jason to do this about 3x. It’s almost hilarious, but it is so truly joyful to watch him do these tasks so freely, effortlessly and with great pride. love.

Behavior-I think this may be the hardest category to show examples of that will resonate. If you can imagine that your kid truly cannot be quiet and that will drive you insane, even though you know language is so important. It used to be I could ask Bryan to be quiet for a few minutes and he would last about 3, then about 5, then about 7. We are up to about 10. I  bet you are thinking this is nuts, but it really is just the nature of the situation. To live with someone who is constantly talking and talking about stuff from 3 years ago or stuff that is so out there, you can get frustrated. He will tell you things like “I said something mean to grandpa 4 years ago” out of nowhere. Or so and so is old or so and so was mad at me on Sept 28. The good is the control we are now seeing to be quiet when needed and to reel it in.

Just a bunch of examples to let you peek through our window!

 

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!

 

Crank it up!

Science question: You’re driving and you have the music on; something good and loud, like the Who, We Don’t Get Fooled Again, what is the decibel level required to drown out the voices in your head? This is not rhetorical people; I need the info. Over the last week so many f-ed up things have occurred that I truly believe only a heartfelt, drug inspired 70’s real rock song could block out the noise. You know something you can crank up and sing because you know all of the words and although you know your voice stinks, it completely doesn’t matter. It also doesn’t matter that your windows are down and sunroof is open, you need to let it out. Feel free to substitute any song you like; I just happen to love the Who and the righteous, guttural way Roger Daltrey belts them out. I always see him in my mind’s eye as Tommy  in those jeans and shirtless, with the long curls,  singing his heart out(just to me of course) and well, that definitely helps get the adrenaline flowing. tommySo….please feel free to email me, text me, IM, twitter, instagram, snap chat, call or snail mail me the answer. I need it. You see I drove to work this morning and no matter how loud I made it and how loud I sang, no dice. Still couldn’t block out the noise in my head. You know something is pretty messed up when your kid says, “you probably shouldn’t blog about this one if you know what I mean”. I do. The actual event or events are not always the hardest part to fathom, but the processing, the clean up of the carnage, well that’s where the real work gets done. The carnage here was bloody and messy and no amount of mopping seemed to do the trick.

It’s  fair to say that you really can’t control most things that happen in your life. As those of us know who have been through therapy and/or are introspective in any way, you know that you can only control your own responses to what happens in life and choose the way you want to handle the damage control. These things are always easier said than done, and emotions have a way of clouding judgment.  What happens when things are unfolding before you and you think to yourself, um, why is this happening and now what the hell am I going to do? How does this get corrected? When things occur and the boys are impacted, I feel like I want to shout out “cut, let’s try this one again”.  When things are going on right in front of you and you are processing them it is not easy to step outside of yourself and say, “hmm, how am I going to handle this situation so my children are not damaged, hurt or angry.” These questions are rhetorical. I was meeting with some folks from my Leadership Broward group yesterday (#LB35 #highfive) and one of the team members is gay and he was discussing the parenting classes he and his husband have to take to adopt a child. Parenting classes? What is this thing you speak of my friend? My mind wandered to a place where I thought, shouldn’t basic parenting classes be required for everyone? Shouldn’t basic human decency classes exist? I guess those things are left up to your parents if you have kids the old fashioned way. In light of the events of my weekend, I was definitely more focused on this topic than I typically would have been. Maybe my personal sensitivity to the challenges of parenting this weekend cast a brighter light on our conversation.

It is my opinion that success, in any form, is not only the result of hard work and a little luck but overcoming some obstacle or plowing through some roadblock. People who have it too easy have nothing to grind against, nothing to strive for that requires the type of deep soul searching and tenacity that propels a breakthrough. I feel this way about innovation and technology, the problem solving aspect, but also the resolve. If I didn’t have autism in my life, I would not have learned what I am capable of. I love when people tell me how much patience I have. I think, “are you talking about me?” I spent the first half of my life so impatient and wound up. I do have a lot of patience now, but it didn’t come from anything natural, it came from survival and for the sheer need and desire to be the parent Bryan needed me to be. How could I face my beautiful boy if I couldn’t be kind and patient with him? (Believe me I have fallen off that wagon a million times, and many of you out there have witnessed it).  Autism is a disorder not a behavior. Would you lose patience if your kid was puking, well maybe that’s a bad example, but you know what I mean. An invisible disorder is still a disorder and needs to be treated accordingly.  I’m still a work in progress, for sure. So by now you may be wondering, why are we talking about success and overcoming obstacles when we were just talking about cleaning up an emotional mess?  The thing I guess I’m grappling with is how much is ok for our kids to have to deal with? How much shielding is good, how much is overprotective? Where are the lines drawn and who has the damn manual? Can I get it on my kindle? These questions in my head just beg for seriously loud music.

 

What does the J stand for?

I go to see my Mom in her new place on the weekends. Yesterday, Bryan and I went on our way to his usual speech therapy and social group. We planned a regular visit which is about 20-30 minutes. I typically like to take her for a walk. She doesn’t talk much and mostly I feel like Shecky Greene doing a monologue (if you are too young to know who that is google it) but I try to get her out in the fresh air and talk about what’s going on in our lives. The bad news is she doesn’t remember what I tell her, the good news I can tell her the same things over and over and she doesn’t get bored. Ok, I know that’s really not funny, but humor is my way of coping and at this point, nothing about this is funny so I have to make a joke out of it. We sat down outside at a table and Bryan was looking at his phone. I wear a “J” initial necklace and my mom said to me, “what does the J stand for?”. I said “Jane” and there was nothing but an “oh, ok” from my Mom. I had to look away. I felt that hot feeling come over me, and no not a hot flash, but that feeling like when you are holding back tears and/or vomit. I thought for sure she might say something like “my daughter’s name is Jane or right”. I don’t care for the expression “the new normal” but somehow it’s fitting. We left not too long after and I didn’t cry when we left. I took Bryan to his speech therapy and sat in the car for a few minutes reflecting. How does the brain  retain so much info and then slowly lose it all. Fortunately, for now she still recognizes me when I come to see her. She doesn’t know that I’m her daughter, but she does know she knows me. She is always excited to see us; at least for now. The strange thing in all of this is even though she does not recall details, like my name or how I am related to her, she does know that I belong to her. Last week when I was there we sat on a bench and we flipped the pages of People magazine.She likes to look at the photos and it does help give me some things to say to her. We notice the fashion and the ads. She looked at me and said “we love each other”. I smiled but again my eyes filled with tears; much happier tears. When I leave her and  I’m alone I always break down. She is doing well, but the reality that she is not ever coming home still gets me each time.

When I go now it reminds of a time when Bryan could not really make a sentence or have true conversation. I remember when we were still living in NY and I took him alone out to dinner. His inability to make an exchange, even in a small sentence, was a big trigger for me to know he was not a typical child. Ironically my mom is now very similar to that small Bryan. I guess the best lesson is that it doesn’t matter whether they can answer back as long as they know they are loved.