You can. End of Story.

endofstoryWhile the focus of this blog entry is on Bryan, the title could apply to Bryan, me and basically anyone facing a goal. Bryan is 17 and is an extremely capable young man. I don’t say this flippantly or casually because there is absolutely nothing casual or inadvertent about where he is today.

About 13 or 14 years ago, when we first learned of speech and language delays, among other delays, before we got the big “A” diagnosis, we went to meet a speech therapist who was considered a guru in dealing with “these kids” and our pediatrician arranged an appointment. Bryan and I went and she was a very business like specialist who asked me a bunch of questions about him and his development. For the next hour, no joke, one hour, she sat on the floor with Bryan and played with him, using Sesame Street character figurines and a playset with slides and activities for the figurines. I sat in the room on the chair holding my breath and and trying not to cry or vomit-again, no joke. What would this woman say after this hour? What was she trying to get at? It was all so unfamiliar to me and terrifying. It was not the first, but it was the beginning for sure, of what would become a long road for Bryan, a long road for our family, and a personal journey for me. After the hour she let me know exactly what she thought. I can remember being in my skin at this appointment as if it was an hour ago. She said here’s what I think: “He’s in there. You will need a tremendous amount of therapy over many years. There is no magic pill; you cannot throw money at this to make it go away. You also need to use his strengths when getting him into schools and programs. You are lucky, he is a very handsome and engaging little boy. If you go to a program, take a photo with you, but don’t take him. You don’t want anyone judging him by his behavior at one meeting.” I listened intently as if the Dalai Lama was imparting the key to life to me. Since this was a long time ago and still very distinct, you know this had a huge impression on me. I feel emotional just typing this and remembering how I felt in the car trying to process all of this info. I won’t take you through the timeline because many of you know it, but it was solid, no bullshit type of advice, including the part about how he looks. It was a crash course in “put your big girl pants on lady, because this journey is not for the weak and you better realize in short order that if you don’t get cracking and face up to reality, you’re screwed”. That’s Janespeak for what went down and for the talk I had and continue to have with myself 14 years later. I am quite fortunate, as is Bryan, that his father was always and is always on board with whatever is best for Bryan, and literally has no ego when it comes to him. Men often shy away from these kids and their issues which can make things worse; but that was never the issue. We were and are still of the same mind when it comes to Bryan: You can. End of Story.

It would be so nice to say that Bryan is now a Phd student at Harvard and has outgrown autism and everything is perfect and rosy. That is certainly not the case, nor the goal. However, the goal has always been and will continue to be that if you work hard and set your mind to something, goals are not only achievable but are inevitable. Kudos are offered up to Bryan and his desire to do well, to learn and to please. What the general public cannot or does not understand is that special needs kids work so damn hard at everything and every moment and task is evaluated. “Gee Bryan was great at lunch last week.” Oh yeah, well how was Jason? I know it’s unfair but imagine your life was one big report card. It’s tough. The one thing I do know is that the most important thing we can give to Bryan is his sense of pride, his sense that he can do and be whatever he wants, without regard to a timeline. And for the record, autism still sucks. Yes, I am grateful for the life lessons, yes I am grateful for Bryan growing up in slow motion and still allowing me to kiss him and hold hands in public, and yes I am grateful for the love and support from some of the most unlikely people. The anxiety that Bryan experiences as “his autism” still thwarts some of his progress and still tests even the most patient of people. His impulse control issues and his language delays still impact him and us regularly. While he feels complex emotions which can be learned from his behavior and some language, his expressive self is still highly challenged. So while I suppose I can and do appreciate the progress, the lesson must always stay in the forefront for both of us. You can. End of Story.

 

Good Feelings Gone

nemoYou know that scene in Finding Nemo where Marlin and Dory are swimming and are feeling happy. On their quest to find Nemo they encounter various sea creatures and obstacles, but at this moment happiness abounds.  They are circling around and gently gliding along, as if all was right with the world. They feel encapsulated with a careless warmth. They are oblivious to the scary big fish luring them in with his magical soft light. The fish goes in for the kill and Dory shouts “good feelings gone!” Just like that they are now swimming for their lives, dodging the scary fish and hoping to escape. I get this feeling sometimes like things are moving along really well, work is going well, boys are doing well and I’m doing well emotionally, physically and spiritually, and then something or someone will crank up the buzzkill and all goodness will collapse into air.

Working at the place I do, which is fabulous, December is over the top. We are rewarded financially and valued beyond comprehension for our efforts. The shot of financial and thankful adrenaline propels us to a great start for the new year. I was able to share with my kids and express to them the ever important lesson of hard work reaps great benefits. I think they are now at an age and a mental capacity to not only understand this literally but feel it in their hearts. Last weekend I went on a super fun excursion to the Bahamas. I had looked forward to going and except for less than stellar weather, it surely didn’t disappoint. I am always trying to find the lesson; for the boys they are obvious, basic growing up lessons, for me, to appreciate what I have, to live life with fun and joy and focus on what are truly the sweetest parts of life.

However, and of course there is always a however or a but, the tough reality of my responsibility load is never too far in the shadows. Of course I never really escape my responsibilities, but a pina colada at a gorgeous resort can somehow stay them for a while. Over the years there have been many reality jolts that have sent me into a downward spiral; a work issue, a Bryan issue, etc. The squeaky floorboard of an issue could not be silenced and essentially my whole house would collapse over it. At this point in my life’s journey I am no longer demolishing the house over a squeaky floorboard or a shorted outlet. My skin is thicker, tougher and experience is the quintessential professor. Last night I got home after a very challenging day at work. I needed to process what had occurred and figure out the best way to remove any emotional feelings from what happened and apply logic and said experience. The only way for me to do this, is to distract myself enough so that my head clears of the problem for re focus at a later time. Clarity for me requires emotional distance and at least at this point in my life, I know it. I decided to have a conversation with the boys about a short vacation over Xmas week. Inasmuch as we had two trips this year, to DC and LA, I am not in the position to do anything crazy, and I do want to take them to Europe next year, so I just was looking for a little getaway. Well, here’s what I learned. Autism is alive and well in my home. We talked about Busch Gardens, Captiva, Marco Island, Vero, etc. We talked about Orlando, the Keys, Miami Beach, Ft. Lauderdale Beach, staycation stuff etc. Bryan flipped out. He is great with transitioning if he knows the plan. This abstract, what if, why, how, discussion that Jason and I were having, including visuals on my open laptop, just stressed him to the max. His anxiety level was so amped up that it was visual and palpable. The power struggle between the boys heated up and a physical skirmish ensued. So as the Mom, who is now way smaller than either of these two testosterone filled teenage boys, I kind of need to get out of the way or I’m going to end up across the room. But since I am the authority, police, dictator (no it’s not a democracy in my house), I had to call to order. A few slammed doors later everyone was in their own corner and I was able to sit down and figure out what the heck just happened. I was grappling between, damn these two spoiled kids can’t agree on a vacation, wah wah wah, and hmm, maybe I allowed for too much speculation, too much input to make this easy. I then had to visit the prisoners to sort out the damage. Bryan is way better now at self soothing and while he couldn’t stop expressing his remorse and his anxiety, the physical control now present is critical to my survival. Jason is trickier to navigate since he gets me more and took the zero and fessed up a fairly heartfelt apology. At this point, I’m done, toast, spent. Went upstairs took a hot bath and crawled into bed. Today is a new day and I’m ready for it.

Plug it out!

bellsLanguage deficits are extremely frustrating, not only for the person trying to express themselves but for the listener. Over the years I have learned to speak Bryan and interpret many of his sayings for their real meaning. Some cute funny things are like this: Bryan always empties the dishwasher. In the middle of emptying it he will say, “there’s a lot of dishwasher.” This means the dishwasher was very full and had a lot of dishes. Or he comes up with silly stuff, like instead of unplug he says “plug it out”. Or he will get some things backwards. He will say to my dad “you’re my grandson” and then we correct him and he says, “I’m your grandson.” All in there, just not always the way you expect it to be. Mostly a good thing.

The hardest thing for many kids with autism, and Bryan in particular, is the exchange that takes place in conversation. One person asks a question and the other person answers. Very very basic, but this essential structure of conversation was what led me to the conclusion something was wrong in the first place. Go back to when Bryan was almost 3 and I took him to the zoo with a friend. He knew the sounds the animals made, but did not truly engage. My friend and her son, a few months younger than Bryan, were having conversation. He was asking questions and answering questions. Not Bryan. Driving home in the car I asked him if he liked the elephant or the tiger and he said nothing. No answer at all. Hmm. As time progressed and tons, I mean tons of speech and language therapy which he still gets today, he started to answer some questions. It was fairly easy to get a who question answered or a where answered. I think for Bryan those were just easier questions because he knew people’s names and heard us often talk about places we were going and these questions don’t require the same level of thinking to answer.  It also taught me that when you ask him something, or talk to him, you cannot assume he knows the meaning of the word. I had to remind myself that you need to give him the definition of the word  because the nuance or the gist of it is not picked up. Still need to do this today. It really makes you think about how much language is actually learned by inference and not definition. As a parent or sibling it’s something that always has to be in your mind if you want to effectively communicate with your ASD kid.

The key to learning for Bryan is allowing him the time to process. It all comes bubbling up if you give it time. However, a huge thing has now started to happen. Like most Bryan things, it is something that just started happening and I say to myself, wow, this is enormous. So here is the thing; getting an answer to the ‘why’ question has always eluded us. It is so frustrating and so challenging, particularly when trying to get to the root cause of some unexpected behavioral issue. For example, he will get upset at school and pinch someone or kick the desk. If you ask him, why did you get upset at school. He will say “because I pinched so and so.” I will say “No Bryan, that’s what you did after you got upset, but what caused you to get upset, why were you upset”. And he will say ” because I hurt so and so” or “because I had a bad moment”. UGH come on you’re killing me. You know the answer but you can’t tell me. He’s 16 and this has always been the one critical piece missing in having meaningful conversation.

Bryan answered a why question!!!!!!!!!!!!!!!!!!!

Now I know you may think I’m cookoo, but it really is beyond huge. It has only happened over the last 10 days and not consistently, but still!! Bryan loves videos, movies, and music. He particularly still loves Thomas the Tank Engine. It is juvenile, but the tank engines have very expressive faces and the videos often deal with the tank engine’s emotions and their interaction. Thomas videos have been regarding as instructional for face recognition and therefore a good tool for little kids with autism. I will not let him listen to Sesame Street or Barney (and thankfully this does not come up anymore) but Thomas is a different story. We do the voices together in the car and he tells me all about the engines and what’s going on. So a few times recently he has told me that one of the engines was upset. I asked him “why was the engine upset”. I was not testing him, I was really just driving and making conversation. He said “he was upset because he was sick and making black smoke”. I paused a second, realizing the enormity of this and decided to probe a bit more and said “why was the engine making black smoke?” and he said “because he ran over some dirty rocks and it got in his engine”. OMG he answered two why questions perfectly. I seriously choked back tears. I said “Bryan you answered why questions, yay” As I speak Bryan, Bryan speaks Mommy. He said, ” I love you so much” which is his standard answer for anything that he does not know the answer I’m looking for but knows I am very happy. Now I know we are not splitting the atom here, but by my standards, we might as well be. To give you a sense of the enormity I couldn’t wait to tell Bryan’s speech therapist. She teared up and said, “we’ve been working on this for years.” It truly takes a village, I’ll tell you that.

So, I am not going to say this is happening all of the time, but it has happened and the more he exercises this “muscle” the more it will happen. I’ve waited so long to get this type of answer but I knew someday it would come. 

 

 

 

 

The Road Less Traveled

IMG_1431Today I read a blog from an autism mom explaining about how sometimes she is angry at parents of typical kids. I get it. Sometimes as a special needs parent you really don’t want to hear how some parents are deciding which college their kid will go to, which car they should get them, blah blah blah. However, in the blog, and certainly how I feel, in the end I would not change my journey. For Bryan’s sake I would like things to be easier for him, but for me, the journey from where I was to where I am now and where I hope to go, well, just wouldn’t change a bit. I grew up pretty spoiled and judgmental. I took things for granted, I expected my life to be on a set path. Post graduate degree/law school, good job, meet a good guy, get married, kids, house, travel, retire, etc. Some things went on a typical path, but most did not.

The real benefit of life is the learning. The ability to draw from past experiences to move forward. However, this persons blog hit a different nerve with me. It’s not so much about the learning and the appreciating as much as it’s about the feeling. I feel soooooooooo much all the time. My emotional capacity for empathy, love, understanding has exploded. Often times this is bad, when I get hurt, I am seriously hurt. But when I am happy and joyful it is over the top, too. Bryan continues to struggle with school and life. I am forced to push myself out of my comfort zone. I can’t manage him the way I used to, I can’t figure what is going on so easily. His emotions and challenges are more complex. He is aggressive and hurtful, yet emotional and remorseful. This has happened in earlier years but I was always able to pin it down to an event. Little kids, little problems, big kids, big problems. I am trying to pace myself and not try to solve everything at once. I am trying to embrace this journey, to be able to accept the pace of things and not worry so much where things will end up. I am applying this philosophy to everything in my life, it does not matter so much where things will end up, no one has a crystal ball, no one can control the outcome, but experiencing and embracing the journey, that takes a certain amount of skill, not my best for sure. I do feel that if I can allow things to reveal themselves rather than worrying about the end result, I will grow and learn. Such a basic lesson, so obvious, yet so challenging. One step at a time.

What would you do?

emojiNot a huge fan of John Quinones, not sure why exactly, but I have seen the show; particularly the one where there is a disruptive child with autism and  you see how people respond. However, the question, what would you do, is a pretty fair one. One of my closest friends called me a few nights ago and asked if she could share a story of something she witnessed. I think it was partly to relay something somewhat traumatic but also to let me know it made her think of Bryan and me. This friend is very mushy and on the occasions she has been with Bryan she has been loving and warm. Consequently,  he digs her. Ok I got off track. So the story goes like this: She has seen a woman and her preteen son with autism once or twice at the local pool. He can be somewhat loud and I guess the mom has offered up to the folks at the pool that he has autism and can say inappropriate things. So far, sounds pretty much like something many of us have had to contend with at one time or another. For me, most people can figure out something is off with Bryan, but because Bryan is so sweet and is always saying “I love you” he often gets a pass. Ok I am seriously having trouble staying on track. In any event, my friend and her friend went into a drug store. When they walked in they saw this boy on the floor completely melting down. The mom was hysterical and the kid was hysterical.  Apparently the kid wanted a watch and the mom wasn’t getting him one and he had a fit. So my friend then relayed how people in the store responded, including herself. It was kind of mix between some folks wanting to help, some observing a sort of freak show, some horrified and some just ignoring the situation. My friend and I then had a long discussion about what should someone do in that situation. Should you mind your own business, should you try to help, should you call the authorities or a doctor? There is no clear cut way to approach this so I’m just going to relay some of my experiences and you can take from this what works best for you.

  • Don’t get paralyzed. If you think you can help, offer it up, “hey do you need some help here?” If you need to watch or look, I get it, it’s a commotion and people want to see a commotion, but look and move on. One time I had a couple stop and watch as Bryan pinched the crap out of me, was screaming and hitting me. They were stopped in their tracks like it was a movie. I turned to them, with my bitch face and said “there is nothing to look at here.” I did leave my shopping cart with its contents and took Bryan home. I am fortunate that when I grab his hand, with my death grip, and even if he hurts me, I can get him to leave a place.
  • Don’t judge. You have no idea who I am or what kind of parent I am or am not. My kid is not misbehaving, he is suffering with his ability to control his body and mind. They are not the same thing. Ask yourself, would I know how to handle a child with autism? You can’t answer unless you have one, and you can’t answer for any other parent of a child with autism because they are all different.
  • Remind yourself that a little kindness goes a long way. One time I was in Target with Bryan and again, another very bad encounter of screaming and bad behavior. I was trying to get him to calm down but some combination of sleep deprivation and pain set in and I started to cry. A very nice lady came over to me and said, “I see you are having a tough time, can I give you a hug?” I literally am choking back tears typing this because I did need a hug and I took it from her and I regrouped and pulled myself together. Kindness rocks!

And….as long as I am on this topic of other people’s behavior, I need to vent a bit. I always encourage people to talk to me about their kids and their development. If your kid is on the spectrum, if you know me at all, you know I firmly believe parenting advice is the best. Here is where I get upset. This is what I get from a lot of parents, you know my little so and so has some issues, a little bit on the spectrum, a little spectrumy, but certainly not like Bryan. My kid has issues but not anything like what you have to deal with and your son’s issues or problems. I mean little so and so has some delays or some speech issues, but not autism. It’s not a contest here. If my child had diabetes would you say, gee my kid’s hypoglycemic, but doesn’t have diabetes like your kid. What the hell!!! Am I supposed to feel happy/relieved for you that you don’t have the shitty autism diagnosis for your kid, or bad for myself that Bryan does? Think before you speak, try to imagine how your words and thoughts might sound to the parent of the kid with autism.  No one behaves well or appropriately all the time; clearly I don’t but awareness, that’s what matters. I am happy to give you any advice, experience I have, but don’t make me feel bad in the process. Be aware of what you say and how you say it.

So, when someone asks you what would you do, say, “I would do the kind thing, I would do the sensitive thing, I would try to help and not judge.” Ok, I’m done!

Achieving Manhood

LittleJ2015Jason just got home from camp. I shared with him some info about a very close family friend whose child may have an autism diagnosis. I told him for a few reasons; first, is he loves this child and would be very upset with me if I kept this info from him. Secondly, he is very compassionate, and finally, he gets it. He asked many typical questions and as he asked I couldn’t help but start to cry. Jason, with the most earnest look, said to me “why would you be sad if X (child) had autism?”. So there you have it, complete acceptance. I explained that I was emotional because I know how hard it is to deal with autism. He looked a bit puzzled, but then said, “Mom, look at Bryan, he has autism and he’s fine.” Now I was really crying. I am full on sobbing. That is truly how he sees him, in some ways. I am not sure if this is because Bryan is still away so he’s not faced with certain behaviors that drive him nuts, or because it is some sort of protective mechanism, or just his perspective. Any way I look at it, I am impressed.

It is always a lesson to parents with autism who have a typical sibling. The typical sibling has never grown up in a household without autism. They, unlike, us, know no different. He has never had a brother without autism. However, the warm acceptance of this should still not be minimized.

My behavior, however, made me feel a bit shameful so I offered more of an explanation to him, as if in some way I could, in one conversation, explain that I love and adore Bryan with all of my heart, but that you want your kid to be as perfect, correction, as normal/typical as they can be. As a parent, you cannot project that upon the other kid, nor should you, it’s not their burden. I really didn’t have to get far into the conversation before he stopped me to tell me he understands. He said “you are the mom”.  Next we spent some time talking about why does the doctor think this child has autism, etc. etc. etc.

Jason’s Bar Mitzvah is less than one month away. While I love to express myself in writing, I have been having a very tough time putting into words some sort of speech or toast to him. I feel as if words that can adequately express the love, admiration, pride for him are swirling around in my brain but cannot connect cohesively. I have already deleted 4 drafts. UGH.  Bryan will be home tomorrow night. I am hopeful that getting back into the routine of watching the boys together will allow the words to come together.

This post, brought to you by the letter A.

groverSo many significant things in my life begin with the letter A. The obvious, autism, plus my overwhelming love for my favorite dogs, australian shepherds. I do have a somewhat new “A” in my life, a rather unwelcome one, but one that I knew would probably be there: Alzheimer’s. My mom has it, my grandmother had it. You may think I’m nuts, which if you are reading this blog on a regular basis this may be a foregone conclusion, but I think that autism and alzheimer’s are diametrically opposed, yet fundamentally, there are so many similarities, I have to share my thoughts. They are not the same in the most basic way, with autism, there is always the hope, chance, drive for improvement, goal reaching, achievement. With Alzheimer’s there is only the ability to slow down, contain, hold off the inevitable end. So how are they alike you might be thinking? They are invisible disorders/diseases. If you were to see my beautiful mom, even yesterday, she looked as lovely as ever. Hair and make up perfect, all of her clothes matching, especially shoes and purse. ( My dad picked everything out for her, in case you are wondering if she really has the big A). If we were to walk into a restaurant or store, you would think to yourself, what a handsome couple. Bryan looks like a big beefy teenager, no visible traces of anything amiss. But if you tried to have a conversation with my mom, you would be stumped, flabbergasted and sad. I am trying very hard to process the slipping away of my sweet mom, but when she is right there in front of you, it’s bizarre to say the least. I am not dealing with it well, because on some level I am not dealing with it at all. Does this make sense? Not really, but what I mean to say is, I have not really explored the loss that is right in front of me. It is so like autism here, yet not.

I say autism and Alzheimer’s are diametrically opposed. I say that because one is getting better and one is not. One is coming alive, learning growing and the other is retreating, shrinking. Yet, they are the same. Here is someone you love more than words can say and you cannot have a real conversation with them. You can share your thoughts, they understand them, but they do not process like you or I do. With my mom, the new conversations are short, fleeting. With Bryan he remembers everything and can retrieve it at any time. Oh the goddamned irony!

My Dad is the ever present caretaker and I have not been as involved as I should be or would like to be. I know I have my life and my responsibilities but there is never enough time in a day to deal with everything. On some level it is almost too painful. My Dad is now realizing first hand just how hard it is to be with someone you love and yet cannot reach them in the way you want. He is realizing just how tough it is to be patient when someone you love is not behaving or reacting in the way the typical world does. While very very difficult for him to handle, we have bonded over the insight he now has in my dealing with autism. So profound if you are me. So profound if you are Bryan. Most people that see Bryan or know us, see a small glimpse of what is like to be with a kid on the spectrum. But to get it, you have to live it. I wish he didn’t have to do this, my Dad, but supporting him through this, is helping me deal with my mom.

Another A, always hanging out, is anxiety. Yesterday Bryan was very upset with me because our plans had changed suddenly. He said, “I have anxiety”. So while I’m not very fond of that A, I was so happy that Bryan could identify what he was feeling and tell me.  At the end of everything, the most important A of all is acceptance. We accept our autism and our alzheimer’s and love our family as much as we can.