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.

 

The days are long but the years are short.

My brain is filled with all types of blog posts. This year has been filled with many challenges for us, almost none of them having to do with Bryan and autism. However, even though I say this, and Bryan is terrific, the challenge of autism is alive and well. The great thing about human nature is that you always want to focus on what is good and not what is bad. Also, no one really wants to hear how you are doing. No one really cares or gets your day-to-day woes, they want to hear the good, so you put it out there. However, the tough parts always exist, and mostly you just need to focus on your perspective. We try very hard to always focus on the good with Bryan. If you read my blog, you know how I feel about him making progress, and how just the sheer fact that he is making progress, well that propels us along. Let me be clear about this, to me, progress is maturity and independence. Progress does not equal neurotypical in any way to me. Some of Bryan’s behaviors, his autism, as I say, is charming, refreshing, engaging and exhilarating. Bryan tells me he loves me about 100x a day, and although it is often at the top of his lungs and because he knows I may be upset with him, it’s still a great thing to yell if you’re going to yell. But, I don’t want to fool anyone into thinking this is some sort of special needs fairy tale, because it isn’t. If you are looking for that, look away, it doesn’t really exist. So while overall we are seeing great progress, the days are very tough. The problem is that Bryan is unable to chill out. As he says “I need to take a chill pill” but he has no idea what that means, he hears Jason say that or he says “I can be quiet” but isn’t. He is up some days before 5 and is eating nonstop. If we did not put some controls on him, he would eat all day and night. He also began pinching again. He tries to stop himself but if you tell him something he does not want to hear, he often pinches. So receiving a pinch from an 8 year old Bryan was not fun, but 13 year old Bryan who has about 50 lbs on me and is about 5 inches taller than me, is painful. ouch!! What is crazy about Bryan’s autism is the bizarro world in which we live. What is easy is hard and what is hard is easy. If you know me personally, you know I say this all of the time. You can take Bryan to do something he really wants to do, like go to the beach or to a restaurant, and he can be so challenging. It can be a complete nightmare. He may scream, pinch, tell you he “cut the cheese” and manage to stink up a car or restaurant and get you to the point of complete nuttiness. Then you can take him to do something like blood work, or today when Earl took him to get braces put on, and he is a champ, a model citizen. He and I were in a car accident on Saturday. He has a lot of anxiety but not phobias. He was concerned about me and I was concerned about him. His form of anxiety is almost humorous. “I am anxious about dessert”, which is Bryan speak for I want dessert and you better give it to me but I know I have not been behaving well so it’s at risk. I am not sure how to explain these things. Part of it is, at least by my thought process, is that he has an extremely high tolerance for physical pain, so some of the things he does well at are because he is not hurting that much and so he can hack it. Just a theory, but I’m the mommy so I think it’s a fairly reliable hypothesis.
We try to spend our long days reminding ourselves of the greatness of the years; the progress and the maturity. And like all autism stories, anecdotes, blog post, none would be complete without acknowledging how a small moment in a typical family is a HUGE moment for us. Both boys are big enough to sit up front with me now. Jason used to push Bryan out of the way to sit up front. So I told Jason, if you want to sit up front, you need to call “shotgun.” So he has been doing this. Yes, I teach my boys the most important lessons! Bryan is very compliant and goes to the back seat. Last week the 3 of us were leaving soccer. As we approached my car, Bryan said “Jason I am calling shotgun”. Jason said “hey mommy, did you hear Bryan called shotgun?”. We were laughing and high-fiving and it was a glorious moment. Jason gets it and we smiled and joked the whole way home. Jason took his place in the back and we literally ran into the house to tell Earl and we all celebrated! Each time they do it now, rather than being irritated by this juvenile game, I love it. They are siblings doing what siblings do and it rocks. The thing about Bryan’s autism is that he can wear you down, he can exhaust you to the point of delirium and then in one second, with one warm sweet hug or kiss or clever comment, you can be brought back to the reality of the love you have for him and how hard he works each day.

Working the Fan Club

?????????????????????????????????????????????????????????????????????????????????????????Blah blah blah Thanksgiving. I know it’s the best holiday of the year, not religious, for all Americans, etc.  I love the traditional Thanksgiving meal and all it represents in terms of giving thanks and appreciating all you have. For many special needs kids the holidays can cause a lot of anxiety. What is expected of me? I feel like that question is on Bryan’s face very often. Crafting an appropriate response  is the essence of communication. Am I supposed to respond? What exactly are you looking for? Bryan always knows a response is required but the kind of response required can be difficult for him. At holiday gatherings  people are often uncomfortable; there are heightened expectations about behavior from everyone. For me, I try to work on myself regarding Bryan and not worry too much if he is anxious, he is a young man now and for the most part he can hack a few hours at a family event. He tells me every day where we are going for Thanksgiving. We are going to my cousin’s house and he is sooo excited. I asked him what do you like about Thanksgiving. His response, classic Bryan, was “turkey and soda”. Love it! Truthfully Bryan will always be focused on food, but more importantly he will be focused on family. He truly loves when we are all in one place, and he feels the love and knows genuine, heartfelt warmth when it’s impressed upon him. Often kids with autism, particularly Bryan, use associations to communicate rather than actual conversation. What’s the difference? Well if Bryan sees someone he knows he will tell them the last thing that they did together. For example, if he sees some of my cousins he will say, “you came to my Bar Mitzvah”. That is Bryan speak, for hi, how are you? I love you, I miss you,I acknowledge you. You see the conversation starters are not easy for him. However, what is more delightful than seeing someone who greets you with something relating to the last time you saw each other? The great thing about my family is that they dig it. They love his little quips and his trips down memory lane. They embrace his uniqueness and we are forever grateful and humbled by it. To know, as a parent of a special needs child, that your family holidays are a safe place for your kid, well that’s truly something to be thankful for.

Years ago we were at one of my cousin’s house for Break the Fast on Yom Kippur. Bryan was probably around 8 or 9. They always had a ton of people over and it was good for us because there were so many kids around it felt warm and secure for us and the boys. Bryan decided to go swimming in his clothes. Some of our family was very distressed by this and gave us some crazy looks. What I always remember about that was my cousin’s teenage kids. They laughed and joked about it. They did not do this in a teasing way, but more of an appreciation for his cleverness to get in the pool and sort of avoid holiday stuffiness. I was a bit stressed at the time but looking back on it all I can do is think, wow, he would never do that now, he’s grown a lot. And for the kids that were there, well, they just love him for being Bryan. At our celebration next week a lot of those same kids are coming in from college or getting ready for college. They have matured, moving on to the next natural stage of life. While I admit I absolutely love hearing about their new adventures, new friends, and life experiences, it always stings just a little bit. Somehow that, what will Bryan get to experience is always stuffed down there somewhere and I have to stifle the urge to let it surface. I remind myself, that his path is his path and we just have to take it slow. Perhaps a few holiday cocktails and a few good laughs will ease the way. Bryan, however, will not be worried about anything except dessert and what time we are going home. Happy Thanksgiving!

Base Camp, Everest

Last Sunday I woke up with a stomach virus, you know the drill, no visuals necessary. I also had a wrenched neck and back after volunteering on Saturday at Feed the Hungry and pretending like lifting boxes was something I do every day. The combination of my stomach, neck and back literally pushed me way way way over the edge emotionally. Get it, mind-body connection? In my case my body reacting poorly forced my mind to become unglued. If you play those mind games where they ask you to say one word to describe yourself, fortunately or unfortunately my word would be “responsible.” How lame is that? To get to 50 years old and that’s the word that comes to mind, my alternative is “capable” but that would mean I would have to think very highly of myself and my mind is not quite there this week. So when you are the responsible person and you are overwhelmed beyond belief, combined with physical discomfort, what’s the result: meltdown, that’s what happens. In my case, I would not say meltdown really, more of an implosion of sorts. I literally could not get out of my own way. You know if you cry a lot while taking lexapro you’ve reached somewhat of a milestone.everestThe doctor doubled my lexapro prescription. Better living through chemistry!

The only way I can explain how I felt was imagine you are at the bottom of Mount Everest. You know you have to get to the top or at least to the first summit so you won’t be too embarrassed. In your mind you are thinking, I’ve been climbing all of my life, I got this, I’m good. You are standing there with your fancy gear and ropes and then it starts to snow a little, no worries, I can handle snow. You climb a little more and then it starts getting super windy. Again you think, come on, I know about wind, I will just hold on a bit tighter. This is all well and good until you stop for a water break only to realize you forgot your water bottle, a completely amateur act, bullshit for novices. And then, then, what do you do? You fall back to the ground knowing in reality you cannot climb without water. I was without water all week. Loser!
I am trying to learn this week. I am trying to learn that it’s ok to have people help you when you need it. My group at work allowed me the time to unplug and regroup and I am grateful. I have also learned that when you need a break you have to take it before your life breaks you. I have this need, this drive to be productive, to get shit done, so when I don’t I feel worthless. I have learned that my boys have compassion and empathy. Bryan was very snuggly all week and he kept saying, “Mommy, you’re sick.” He kept coming over to me wherever I was and just hung out with me. Bryan has his way of letting me know that he cares. Jason gave me plenty of hugs but on Wednesday morning, when I truly felt my worst and was crying and puking at 6am and looking like hell, said to me “you look beautiful.” I see an Oscar in this kids future. Earl allowed me to freak, didn’t try to talk me out of it, didn’t try to minimize my feelings, I am not sure if he learned too or he was afraid to poke the bear. Either way he treated me with kindness and respect for the person I am and that too helped the healing process. Kindness and warmth should never be minimized.
In reading back this post as I am writing I am thinking, wow this is not about autism. Does that mean I am falsely representing my blog? Well I will offer up some autism stuff. I went to the doctor on Tuesday and let loose all of the problems and issues that had me in knots. He asked me how things were going with my son, meaning Bryan. I was able to say, without hesitation, that right now Bryan is great. He is communicating better, he is more aware, he is more engaged. He is loving school this year and is genuinely happy to go each day. When I see him making progress, I know I can make progress too.

I won the powerball!!

powerball2Ok, settle down, no I didn’t win the actual powerball. If I did, do you think I would be blogging? No, I would be out figuring out how to allocate some funds to family and friends and then I would write some short blog from Florence. firenzeSo pretty much everyone does that “what would you do if you won the lottery” game with their spouse, family, friends. Yesterday I picked up Jason from Hebrew School and stopped to get gas in my car. We decided to go into the gas station convenience store to get some gum and go to the restroom. When we bought gum we also bought a powerball ticket. I usually just buy one. I know that is dumb from an odds perspective, but really, if you go that route, there is no end to the amount you should buy. We also play as a group at work, and that seriously increases our odds, but still it is more likely to drown in your bathtub than win. So Jason and I got into the car and he asked how much the powerball is right now. Earl has always played lotto and the powerball so he is familiar with the tickets and the discussion about winning the big one. I play if I remember when I go to get gas or we do it as a group. As you can picture, on our way to get Bryan at speech therapy, Jason asked me what would you do if you won?<a

Here’s how it went:
Jason: We would buy a house in NY, right Mom?NYC
Me: Yes, of course we would, and houses for Aunt Stacey and Aunt Frannie.
Jason: Would we give money to charity?
Me: Yes, of course, probably a million dollars to autism charities.
Jason: Do you think they will ever find a cure for autism?
(So here is my aside to that question. I have never been invested in a cure. I guess that is because I do not look at autism as a disease. Does cure imply disease? Hmm.)
Me: Well I am not sure. I don’t think of autism really as a disease, but I would like things to be easier for Bryan and other people with autism.
Jason: Well people with autism don’t know they have autism, so I guess it’s ok.
Me: Yes, Jason, they do. Maybe not at a super young age, but Bryan knows he is different. He may not be able to articulate what is different but he is aware enough to know that he is. Also, adults with autism know they have autism. I am not sure it’s a good idea to take away their autism either. Maybe they have it so that their brains can function better, smarter, or more creatively. They have other issues, but their brains are always working.
Jason: Maybe they could get that thing like an antidote, you know to stop if they wanted it.
Me: Interesting idea, smart boy.
Jason: Would you want Bryan to have an antidote to autism?
Now if you know me and us, you know that Jason has asked this question before and in many different ways. I wonder if he wishes Bryan did not have autism or does he wonder like we do what is really in Bryan’s mind. I wonder if he thinks, as I do, that wouldn’t it be great just to have a regular conversation with Bryan to know what he truly thinks about his world, his life, his being. These questions are so interesting, because, like teaching Bryan how to answer a why question, we have to teach Jason that there are why questions we cannot answer.
Me: Jason I always struggle with this. On the one hand I would love for things to be easier for Bryan, like a typical kid, on the other hand, would Bryan really be Bryan without his autism? As predicted, just saying this triggers watery eyes.
We got out of the car and went into get Bryan from speech. Bryan’s speech teacher explained to us how Bryan needs to work on why questions. We know he needs this but the exercises she gave me truly go to the essence of this disorder. One of the pictures shows a person driving and there are raindrops on the car and the windshield wipers are in the middle of the windshield to show they are working. The question is “why do we use windshield wipers?” So simple, something people figure out from being in a car and a typical child can just say why we use them, no one has to explain it or teach it. For the child with autism, the inference, that’s where the challenge lies. Bryan knows why we are using them, but can he take the thought of why and translate that into a comprehensive response? Not easily is the answer. These are drills we must always do. They are a reminder that you must give your child the tools, the language to persevere and progress. The most obvious inferences and conclusions are always the most difficult.
Bryan has trouble saying the letter “L” and saying “th”. Marcia, our speech teacher, (I say our because this woman cares so much for all of us, not just Bryan) gave me a sheet of sentences that contained one or more words that started with “L”. She said you must read the sentence to him first so he can get ready for the “L”. Wow, I had never thought of it that way. He must prepare his brain to say the “L” since it is not a natural sound to him. Genius!
We got in the car to drive home and I thought wow, I think I already won the powerball.

Veteran’s Day

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

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.