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.

Choose Your Mindset

I went to a meeting last Friday for work. It was actually a conference and typically the keynote speakers at this particular event have been sort of flat over the years. The keynote speaker this past Friday was electric. You know the type, where not only was the content great, but the delivery was so good that you didn’t look at your watch once. He was talking about entrepreneurship and the key tools to be successful. He outlined his seven steps for success. I love to watch people. Some were feverishly taking notes as if it was just that easy; if I do these quick seven things I will make a million dollars. For me, one point got me thinking. He said, “choose your mindset”. Amen. Clearly this is not just an entrepreneurial theme, duh, but a life theme. It is so easy to be mad at the world or feel like you got a raw deal at times. I try with every drop of myself to see the glass half full on a daily basis but no one, and I dare you on this one, can sustain that positive outlook all of the time. Hence the need for the kick in the ass every now and again. So listening to this man, who came from the cotton fields of the south, pull himself up, and become an extremely successful man reminded me to get over myself.
I have a milestone birthday approaching and although I’m not really the kind of person that freaks out from numbers or lies about their age, it can be hard to process at times. As a woman I think it makes you reflect on your sexuality and your appeal. Here’s a quick test. Walk past a bunch of construction workers. If they still look at you, you’re ok, if not, dial it up a notch. Perhaps it’s time for a new wonderbra or something. As a woman the title Mom may not be the sexiest but approaching your motherhood like anything else, with confidence; for men or women, that is sexy. You gotta think MILF to be a MILF, right? perhaps some serious therapy is in order at this point.
But choosing your mindset is sooo important when dealing with your child with autism. You want people to accept your kid, respect your kid, etc. so you need to do this yourself. Mental preparation is the key. I mentally prepare myself every night on the way home from work. You see when I walk in the door Bryan is on me. Actually, it’s before I walk in the door. Typically he meets me in the driveway with what I call “his demands”. There is no walking in, decompressing, changing, relaxing. If you have typical kids and you get to do that every night, take a moment to think about how it would be if you didn’t get to do it any night. If he has had good behavior throughout the day he just comes out to the car to tell me what he wants for dinner and forces the babysitter to leave. If he has had bad behavior he confesses and is an emotional mess. “Mommy I hurt Jason, I’m not bad.” But Bryan is so emotionally connected to Earl and me that if we don’t choose the proper mindset the night will be fucked. There truly is no other way to say it. If I greet him with disdain or frustration or just dismiss him he will hit himself or cry or throw a huge fit. He can be talked down to some extent but it can take upwards of an hour to get him to relax. Often Earl and I get home within 30 mins of each other. It is always interesting when you are the second parent to arrive. You need to approach cautiously, like is everything under control? Often it is, kids may be having dinner or the dogs may be having dinner or both, but it might not be. The key is your mindset. If you are the second parent walking in and you have a good, helpful mindset you can diffuse, assist, calm the situation if needed. If you come in and criticize or judge, well between the kids and the other parent, you might as well have stayed at work. Just a day in the life! So after listening to this really awesome speaker and thinking about where I am in my life and where Bryan is in his life, it is even more important than ever that I choose the most positive mindset I can muster as often as possible. Alternatively, I can get enough Botox so no one will know that I’m not smiling.

Divide and Conquer

You can sort this post under the category of stopping to take notice of things that may seem trivial to some, but are major to us. This weekend Earl took Bryan to NY for 3 nights. The purpose of the visit is to attend a very close friend of ours son’s Bar Mitzvah. They just attended Bryan’s Bar Mitzvah so the shared celebration in and of itself is noteworthy. The husband in this family has been a very close friend of Earl’s since childhood and has been Earl’s emotional touchstone on our autism journey. They have two boys and it’s their younger son’s Bar Mitzvah. They have raised their boys to be genuine, caring young men and the younger boy is truly a friend to Bryan. All good. (Earl mentioned to me that no matter how many times Bryan says “I love you” to Eric, he says it back. Can you imagine a 13 year old boy being so kind and understanding? Most kids would think it was weird or awkward and run. Nature and nurture. Some of it’s him and some of it is good parenting). Either way it’s to be celebrated. So what is so special or thought provoking that has caused me to blog about this? Earl and his parenting. Today he is going out for lunch in Manhattan at the Cornell Club with about 6 or 7 of his closest friends. I’m not a name dropper but the fact that our friend Lloyd that belongs there invited Bryan and all of the fellas is a testament to the kind of parent Earl is. He literally has no ego or self consciousness when it comes to Bryan. It is a remarkable thing and I will never get over it. Since Bryan was diagnosed he has never said, I don’t want to take him to X or Y. He said, “let’s treat him like a typical child.” And, not in the way of, I’m in denial, he doesn’t really have autism, but more in the way of, if you want your kid to function in the real world, expose him to it. Show it to him, don’t hide him away like you are ashamed of him. We had YEARS of leaving things early, dealing with screaming, and tremendous anxiety. I spoke with Earl last night and this morning. Bryan is basically not eating and perseverating about going home on Sunday. puzzlefamilyAlthough he trusts us and knows he is not going to camp yet, until he is on the plane going home, he still will have some anxiety. The huge difference at this point is that he is more in control of himself and his body and he can self soothe to some extent. In earlier years it would be brutal for one of us to be alone with him for 4 days. Not because he isn’t a loving, sweet boy, but because the deep place within yourself you must find to not lose your patience, your resilience, was the ultimate challenge. The inner struggle between wanting to be that good parent with all of the answers and the human who wants to say screw this can really be a battle. I feel we have won the war for the most part, but every now and then you have to take out your armor just to make sure no rust has built up!
In any event, I must admit I am envious of this lunch that they are going to today. I love all of these fellas and they love Earl and me individually and collectively. Bryan, while unable to at this point in his life to navigate real friendships by typical standards, will witness lifelong bonds before his eyes. Modeling at its finest. Earl is the most loyal person I have ever known and most of the friends he is seeing have been by his side for decades. Although Bryan will not talk about it, the pride that a boy feels with his Dad when they are just hanging with the fellas; it will not be lost on Bryan even if he can’t express it in words.
Here on the home front Jason and I have been in major snuggle mode. He slept in my bed (no Oedipus comments he won’t be little that much longer) and I was wedged between him and Riggs (our mini Australian Shepherd). Pure heaven. Jason, in keeping with his on the job training as junior psychologist, asked me if I spoke with Dad or Bryan this morning. He was busy playing Minecraft and obviously didn’t hear the phone. I said yes and that Daddy said Bryan had been pacing since in the hotel since 4 am and had not eaten barely anything since they got there. Jason listened and said, “he never eats when we go anywhere. He gets anxiety. When he gets hungry, he’ll eat. Don’t be sad Mom”. Then he proceeded to tell me about the house he built in Minecraft. Never missed a beat. I choked back a few tears. He’s so matter of fact about Bryan. I said to him, “I’m so glad I can talk to you about Bryan, I know you really understand him.”. He said, “yes. I know him the best.” Interesting comment but on some level it’s true. You see for Jason, he doesn’t know what it’s like to live without autism so for him it’s just part of everyday life.

Resistance is Futile

What goes up must come down. Damn I hate that. But if you know me well, you know I allow myself two pity parties per year and I guess I am happy to report that I am really long overdue for one. I am tough, but not a sad person by nature, so these are just a form of catharsis I guess. The triggers for these events, which are usually a day under the covers crying in pajamas watching sad movies or home videos, are usually some combination of things. One thing alone can never take me down. Often it can be talking with people from my past or people telling me how good I am or people telling me how responsible I am. Who the hell wants to be so damn good all of the time? What an albatross that is. In any event, here are the things that really get me so if I am going to go to the dark side for the first time in a very long time, I’m going to unload big time. If you don’t want to get to know me too well, look away-this one is for mature audiences only.
Here goes: recently there was an article about two families with children with autism that received large awards in their anti-vaccine cases. I have a confession to make. The vaccine thing is my Achilles’ heel for sure. I have avoided this in my blog in all of this time and somehow I feel like I have been dishonest; like I must talk about this topic to be true to myself. It is one of the most critical topics in the autism world and one of the most personal for me. To think that I buckled my beautiful, perfect, 13 month old boy into his car seat, drove him to his appointment, held him while they gave him an injection that may have changed his brain, his life forever, well, ouch. I can see myself driving to the pediatrician since we did it so many times. Why didn’t I question such a serious amount of vaccines at once? BEYOND… Nope, can’t do it. no, no, no. If I allow myself to go there, I will have trouble getting back. Melodramatic? perhaps, but just try to wrap your brain around that if you are a parent. The problem is/was that we truly don’t know. I don’t know where he was before the MMR vaccine. He was so young, only 13 months. He seemed to be developing fine….We will not know, but if I make all of this my fault, well then how do I face it? I try to tell myself that I did what I did because I thought it was right. Everyone told me he should have his shots and I never questioned it. The discourse wasn’t around like it is now. I don’t like to go to this dark side often because of the deep mommy hell it presents, but whenever I see or hear the vaccine thing, I get a nasty pit in my stomach. Where was I? Who was I? He definitely seemed to regress after the vaccine, but not right away so it’s hard to know. I try to focus on the now and the future. I can’t go back so I can only move forward. I am not writing this for anyone’s pity. I am writing it because I know there are PLENTY of parents that I share my blog/journey with that feel this way too. Any parent of teenager or older with autism knows that we were in the goddamn dark and still are about the environmental triggers or any cause of autism. But for me personally, this is my demon that I deal with and carry with me. Earl does not blame me, for which I am grateful, but I do not have sufficient clarity for the time before the vaccine to offer myself clemency or lay blame. As I say, it is one mine in my personal mommy minefield.
If I’m going there, then I’m going all the way. I’m stealing this blog idea from my friend Jen’s husband Mike. He guest blogs on her blog (Earl-I will give you a guest blog I promise) and he wrote about the fear you have as a parent of a special needs child in assessing your mortality and planning for your child’s future in the event of your early demise. I read his blog on Sunday, and no offense, but it may have been just enough to reach my inner core and level me. You see I pride myself on being very tough, very together, but like I’ve said before, about twice a year, I really need one or two extra fingers to plug up the dike and I come up short. Ok, so, is it plagiarism if you just steal the idea and not the actual words? I’m giving credit so hopefully there won’t be an issue! In keeping with my type A personality about 20 seconds after Bryan was born I insisted we get life insurance. Not long after that Earl and I started talking about our wills and what would we do if anything happened to either of us, you know the drill. Later on after Jason was born, this discussion started to change. For anyone who doesn’t really know us too well Jason had several medical issues not long after he was born. At 5 months old we found out Jason has pituitary hypoplasia (1/2 a pituitary gland) and would not grow without meds. This was exactly the same time Bryan was diagnosed as on the autism spectrum. So at this point we were asking ourselves, who would want to care for these children? Who could love them, who will be strong enough mentally and physically to take this on? I remember being in the courtyard outside of Columbia Presbyterian Hospital in NY calling my Mom in Florida after the Pediatric Endocrinologist called me to give me some news on Jason. The news was very difficult and my mom started to cry. It was very tough on her. She was far away and wanted to help but didn’t know how. I remember feeling like a soldier, time to lock and load, no time to slow down.
I spent hours on the internet, your friend and enemy during these challenges. What you come away with is, who will do these things for my kid if I’m not here? Interestingly enough, Earl and I were more worried about the care for Bryan at that time because for Jason everything was spelled out and easy to follow. There was protocol, treatment, a plan. For Bryan, which still holds true today, it’s a goddamn crap shoot. There is no set plan for autism, each kid is so different and every day there is some new treatment or bullshit on the news. We are fortunate to have lots of family that are willing to help with our kids and will take them in the event of a tragedy. At this point, if Jason could drive, he could handle Bryan!
However, the angst this represents for parents, especially my dear friends, is not lost on me.
I feel a little bit like a leaky tire right now. I put Jason to bed. The kid is my mini me. He reads me and says, “mommy, come give me some sugar”. Damn that kid is good. Time to tuck away the sorrow.

I’d rather live in his world than live without him in mine

gladys

So one of my favorite autism mommies and party planning soulmates asked me to write a blog about something. I have never actually had a request before. Earl and I have had many “there’s a blog in there somewhere” moments, but no actual requests on a topic.
So here goes…Her son is one of Bryan’s best friends. He is also 13 and has good communication skills. His voice changed recently and he sounds like a man, it’s freaky! I noticed Bryan with a little Peter Brady “it’s time to change” squeakiness but he’s not quite there yet. Frankly, I can wait. Ok, back to the topic. She tells him, “I love you” and he says “thank you”. People love to tell us that’s the wrong answer or he’s in his own world, not her son per se, but all of our kids when they give an atypical response. One of our other friend’s sons says the most original things. A few years ago his dad said he was thirsty and needed to get hydrated with a drink. He said, I need one too, I’m lowdrated! These kids have a way of capturing thoughts and language that is very unique but they communicate their feelings. In my house the boys say when they have a cord that they will plug it in or plug it out. That makes sense really!
The point of it is we spend almost all of our energy forcing our kids on the spectrum to live in our worlds, physically, of course, but emotionally; that’s the challenge. I have mentioned before how much I have learned from reading Donna Williams’ books. She’s the 40 something Australian woman who did not speak before age 9 and now has written a dozen books and lectures all over the world. When I read her first book I literally had to pause to sob at times. I kept thinking, OMG, he’s in there; he understands everything we are saying and oh shit, he understands everything we are saying. She really opened my eyes to the idea that Bryan sees the world very differently and how truly tough it is for him every single day just to cope in “our” world. Can you imagine lots of people talking to you all of the time and it just sounds like garbled noise, but these people want a response from you? Can you imagine being asked question after question but you are still trying to decipher what the first question is? Can you imagine living with your family where you hear them talking about you like you are not in the room, because you literally are unable to respond but you understand every word they say?The key for us was to remember that while Bryan does understand everything, we must give him the time to process. Bryan’s biggest challenge is auditory processing. We just needed to learn when he was younger to slow it down. He was still answering the first question when we were on the third. Reading Donna’s books, listening to therapists, watching him, we learned how to approach him in his world. Over time he has caught up a little bit to us and we have watched him mature and grow.
Over the years when we have reached points of frustration, where Bryan’s language was so limited I often felt like saying, screw it, let’s just move to some island where it does not matter. Earl and I have had many heartfelt discussions about, how is it fair to force him to try and work so damn hard to live in our society when perhaps he shouldn’t? It’s hard to explain this but what you witness as a parent is watching your child struggle with every nuance. When I sit with Jason and we watch a tv show, no matter what it is at this point, he can get the jokes, the sarcasm, the inferences. Autism and inferences are not friends. The surface or literal interpretation is obtained but the rest must be spelled out. It’s not because these kids are not intelligent, it’s just that some aspects of body language and communication are not natural for them and are not easily taught by us. A simple phone conversation can be a challenge. In today’s world there are all kinds of scripts and social stories to teach our kids how to handle these exchanges, but as parents we need to remind ourselves that what is a natural progression of learning for our typical child is not the same for our child with autism. Some kids can’t read facial expressions, some can. Bryan can read basic emotions like happiness, sadness, anger. It took a long time for me to explain to him the difference between sad tear and joyful tears. I told him some are sad tears and the others are love cry. I can look at him now if I tear up and he says, ” you love me”. And of course I do.
One of the great things about living in “their worlds” is the slow motion. You get to keep them little longer. Most 13 year old boys would not want to snuggle with their mommies to watch a movie or kiss them. Although I am sure I am embarrassing to Jason, Bryan will hold hands with me anywhere and he is a bit taller than me so I’m sure it looks kind of cute from behind.
As many of my autism moms and dad’s know, it takes experience and battle scars to learn how to embrace their world. This is not something that comes in the first few years. The first few years are for intervention, the next few years are for learning, we are now in the teen years where we are planning for the future. The sky is the limit.