Love Now. Love Always.

noah n dad

After a great dea of hand wringing We finally had the talk a few nights ago with our son.

NO, NOT THAT TALK!

I don’t do that particular talk unless I’m cornered like a wild fanged woodland animal. Perhaps I’m a bit old fashioned, but I prefer to leave the teaching of those particular life lessons to my children to be given to them by a third party. I’m okay with that third party being an informative/graphic brochures, checked-out health teachers, or various GoDaddy.com commercials. There is no reason that somebody with my extreme aversion to uncomfortable subject matters should be handing out bits of wisdom on the complicated relationship between Commander Bird and Princess Bee. When I have to speak on the topic of sex (or as I call refer to it to my children as “THE THING YOU DO ONLY WHEN YOU ARE THIRTY YEARS OLD AND HAVE A JOB AND CAR AND A FULL UNDERSTANDING OF THE MARRIAGE VOWS THAT I’M ASSUMING YOU’VE ALREADY MADE WITH THE PERSON YOU ARE CONSIDERING DOING THIS WITH!!!! ” to my older kids) I usually start with one of the following prompts:

Life is scary and so is sex…….

Have you ever watched animal planet? You haven’t? Okay, lets find the remote…

Love is a battlefield……

Do you remember that time your father got an impromptu and uninvited lap dance by the tipsy lady on that boat in front of you and your mother? Well, good….

Don’t panic or anything but I’m about to talk to you about something that will someday be the focus of one of your future therapy sessions. You better write this down…

If I had given the “miracle of life” talk recently you can rest assured that I would not be blogging about it – I would be drinking about it instead! I’d be using every ounce of red wine I could find to wash away any memory I might have of the things I would have said to my children. No, the talk we had last evening was one my wife and I wanted to have with our oldest son, Noah, for a few years now. We told him about his autism.

Noah’s diagnosis of autism had been the worst kept secret of all time – mostly because I’m the egotistical rube who keeps blogging about it. Everybody knows that Noah is autistic, well, everybody but Noah. At some point we had expected Noah to ask us about why he went to therapies and his brothers didn’t. We were sure there would be a point where he would quiz us to why he had a very difficult time keeping his hands still but nobody else in his peer group did. Honestly, my wife had operated out of the playbook of “We will tell him when he asks us about it”. The problem was he never asked – so it was up to us to bring it up to him.

We have been struggling for a while (“while” is code for: years) trying to decide when it would be the right time to talk with him about his diagnosis of autism. We have been conflicted between giving him the scoop about it because while we feel he has every right to know something so important about his story, we didn’t want him to use that label as an excuse. “Oh, I can’t do _______ because of my autism” is something that we never want him to say. There are plenty of people in the world (RICHARD “PUKE FACE” DAWKINS, I”M LOOKING AT YOU) who set low expectations on people who are living with special needs – and it has been a fear of ours that Noah would someday surrender to that particular narrative. Saying it out loud to him had the chance of breaking his heart. Maybe he would be furious at us for never telling him before now. Perhaps he would start to see himself as a “less than” or broken. Often times when we would consider the idea of letting him in on his ASD label we could easily talk ourselves out of it. WE just needed to find the perfect words to say and spot on timing to have the chat, and we never could agree on what those words or timing should be. So we waited…

It turns out that there is no such thing as the perfect words or perfect time for the moment you are going to tell your 14-year old that he has been living with autism his entire life. That is especially true when you are afraid to have the conversation in the first place.. There was always a reason for us to put it off – until a few nights ago, when Noah made it impossible for us to hide from it any longer.

He brought up the subject of his future. He had some serious concerns we wanted to talk with us about. Noah admitted that he was feeling different lately. He was fretting (I’m wondering where he got that practice of worrying…it was probably those damned video games!) over what life holds for him. He admitted that when he thinks about his future he gets really scared. At his age I was most concerned about was how much bronze mousse could I apply to my thick helmet hair without it being a fire risk. Here was my barely teenage son anguishing beyond his years and it was proving difficult to negotiate himself out of his state of anxiety. He sounded just like me at age 40! Worrying about the not-quite-real problems of an unknown future! That’s my boy! I’ve taught you well! When he began to admit that he was afraid I was sure I knew what exactly those fears were.

“Noah wants to do amazing things, but he is worried that he may not be up to the task of it all. He was worried about college and having a family. He is stressed that he will never be worthy of either of those things. I’m sure he is scared that he won’t be going to get into college or get a job?” I thought to myself. Of course he is worried about these issues. I would be too. If he only knew how much he had overcome so much in his past he would not doubt so much about his future. If he only knew how strong he is then we would have more faith in himself. What could we say to help him stop worrying??? There were no words…

Oh wait. Yes there are!”

Just like that we broke. We told him his story. We explained to him about all of the obstacles he has faced. We told him about his courage. We told him about his heart. It is a strange thing to tell your hero about their own journey as if they have never heard it before – but for Noah it was all a revelation. He had never given much thought to all of the hundreds of therapy sessions or camps he has been to. He had never considered that all of his acknowledged quirks had a name behind them; Autism. It was a very stark reminder that while he worries about the future, he is fully immersed in the present. The past is no longer of any consequence to him. All of his previous struggles are a dream to him and have nothing to do with who he is today. He did not respond much at all to what we had told him – there was just a lot of nodding which indicated that perhaps we were helping him put the pieces together. Sill, he was not giving me a whole lot of reaction to work with here! How could he not be any more interested in this? He didn’t seem to care too much about his past problems…

When he didn’t say anything I took it as a my cue that it was time to earn my Father-Of-The-Week award. It was time to fill the silence with the sound of my own voice.

I blathered on and on about how despite whatever word is stamped on his IEP (individualized education plan) or a doctors chart, that he is the only one who gets to define himself. I put my mouth in overdrive and tried to talk him out of whatever negative feelings he was having about the news of his autism. I was on fire! Yes, Noah, you will always be autistic. Yes, you will have things that will make you different than other people. Yes, there will be things that you have to work through that other people will have a hard time understand. That is your beautiful story. You have gifts that are different than just about anybody else you will ever meet. Noah, you can do whatever you want in life. Noah, you have more inner strength than I will ever have. Talk. Talk. Talk.

I just kept talking about how hard life has been for him and that he still has a fight ahead of him.

He just sat there.

My ego took that as a sign that I hadn’t quite said the right thing yet – I better keep talking!!!

Dad: Talk. Talk. Talk.

Noah: Sit. Silence. Sit.

I hadn’t told him what he wanted to hear. What more could I say? I already told him about all of his struggles and how we have hope for his future. That he shouldn’t worry about having a job or career someday because he is capable of doing anything.

I just kept talking…

Eventually my wife put us all out of our misery and interrupted my ninth monologue to ask Noah if he had any questions.

He really just had one question.

“I just want to be a good parent someday. Can I still be one?” he asked softly.

Wait, what? That’s all he wanted to know? What about getting into college someday? What about a vocation? Wasn’t he worried about how Autism would affect all of that? Come on, boy! Didn’t you get the script I already written in my head? You are supposed to be a lot more concerned!

My wife assured him that he could which caused the corners of his mouth to tick upward. He was relieved. “I just want to take care of people.” Noah said. “Taking care of people makes me feel important. It fills my heart.”

Aw, shit. The tables had turned. We weren’t having the talk with him – it was the other way around. He was going to give us thr talk. Noah doesn’t care about the stupid grown up problems I’ve been force feeding him about jobs and college. He just wants to know if autism will affect how much he can love other people and how much he can be loved in return.

Quickly I’m reminded about the prime directive that he was put on this planet to follow:

Love now. Love always.

Despite (and most likely because of) Noah’s Autism he loves more fiercely than I will be able to. There is no on/off switch for him when it comes to love. There are no levels of love. You either love somebody or you don’t and there is no reason to not love somebody. He loves his immediate family. He loves his friends. He loves his extended family. He loves the other children on the playground. He loves his teachers. He loves the grocery checkout person. He loves animals. He loves strangers. He loves you. Noah loves everybody. Noah hates when people are upset – and he is supernaturally sensitive to other peoples suffering. If a baby is crying he wants to rush over and see what he can do to help, even if he doesn’t know the baby! If a person is upset he will try anything to make them feel better. To him there is no better thing to do than to save people from feeling sad. He will compliment you when your down and if your lucky he will happily produce an original joke to try and make you smile. Even if you don’t care about your own happiness, he will care enough for the both of you. Even if you have never met him, it’s okay, you still have a place in his heart.

He just wants to love and to be loved. That is it. If you hurt him, he will forgive you. Noah believes that love is the natural state that people should share between each other. My son’s worldview is simple and very Beatles-centric “All’ you need s love.”

Noah’s name fits him perfectly. He wants to rescue people from the floods of melancholy that life can relentless pout on us. He will not leave anybody to drown in there own tears. He wants to take care of us. He has built an ark in his heart and the sea of life is his home. He has built an ark it’s big enough for all of us. Even me, his Judas.

I have been his unintentional Judas for years. I’ve betrayed him more times than I can count. I have been unfaithful to his prime directive more often than not. Through many of my actions I have taught him to be afraid. I have taught him to worry. I have taught him to concern himself with the invisible problems of the future. He has watched me writhe in anxiety about borrowed trouble that usually is never usually grounded in reality. I have taught him to be exhausted by life and to give up easily. I’ve taught him that people should be feared and only love those who were lucky enough to get past the picky and steroid-y bouncer who stands with his arms crossed right outside of your heart. I’ve been the terrible example to him that the past will always haunt you. There have been times I have tried to talk him out of the practice of offering his heart to everybody because I’m well versed in how terrible people can be. He never listens to me – which shows the real scale of his IQ.

In the moment of the great reveal to him I was ready to betray him again. I was focusing on the past trials and to jabbering to him about the mountains ahead of him that he still has to climb. I was telling him it’s Noah vs. The World. That was not what he was interested in hearing. He needed to hear that it was instead going to be Noah and The World.

He doesn’t care about what job he’s going to have – All of his worries that I thought he had were only the ones that I constantly project on him. Noah only worries about his capacity to love and if autism is going to affect any that. He does not want to be disconnected from us. He doesn’t want to wake up someday and not have people around him who need him. I have betrayed him with my own depressive and cynical nature. I’ve been working it direct opposition to his prime directive. I shouldn’t concern myself with how autism will affect his future…I should be more worried about if he will take after me, which is probably a far worse fate.

The only thing he wants to know is “Will I be loved and will I be able to love?” Hell yes, my son. Yes to both. For him love is not a feeling, it’s an involuntary action. It’s like breathing. I’m jealous. What a wonderful way to live. Autism will never steal that from him.

Dearest Noah,

This is what I should have said when we talked with you about your autism:

Autism will never stop you from loving and taking care of us. Autism will never divide us from you. Autism cannot touch your heart. Thank God for you. Is there room for one more person on your ark? I promise to try and help. I will do my best to follow your mantra:

Love Now.

Love Always.

I will float with you on the sea of life until I breath no more.

Just don’t ask me about sex. If you do I will melt into a puddle of sludge.

Always yours,

Dad.

Get busy loving. Or get busy dying.

11 Responses

  1. Miss Lisa Mae Marks
    Miss Lisa Mae Marks at | | Reply

    Applause! We had the talk with our ASD child and he said the same dang thing! Out worries ain’t their worries. Our special children just need love!

    Love yourr writing! More please!

    Although I do think you are way to mean on yourself.

    1. Aslam
      Aslam at | | Reply

      Thanks for posting this. Only 2 thmons’ post-diagnosis, I am still trying to get my mind around what is really going on here. I told my husband that I am beginning to suspect that the concept of the autism spectrum is like a bunch of ER doctors sitting around wondering about this Broken Bone Syndrome (that’s BBS) they keep seeing. Gosh, they sure see a lot of people in there with a broken leg and a broken arm plus also bruises. Hmm, what if the leg’s not broken? I guess that’s the Not-so-bad BBS. Well, what if the spine has been severed? Oooh well that’s Really really bad BBS. What causes BBS? We don’t know, but we’re pretty sure this is a thing. These folks sure have a lot in common. Only, BBS would be a lot more like ASD if we imagine that the doctors aren’t allowed to talk to the patients or X-Ray them. I still don’t understand everything, but it sure is obvious to me that if the problems that these children are experiencing are coming from a lack of connections in the brain, then their problems will be different depending upon (a) how poor the connections really are; and (b) exactly which portions of the brain are actually affected. Meanwhile, it should be equally obvious (to me; of course I’m a layperson and have no idea what I’m really talking about, so this probably isn’t really obvious to an expert:)) that if a set of behaviors or problems on the outside are caused by problems with brain connections, that there must be hundreds of types of things that could go wrong to mess up those connections. I guess we know that a huge number of these folks have inflammation in the white matter where the connections are supposed to be, but even so there must be lots of different things that could cause that kind of inflammation. Further, surely you could wind up underconnected due to injury or trauma, or maybe that whole under-myelination thing. At the end of the day, I really believe that arguments over DSM criteria is a red herring that distracts from the real issues we need to focus on if we are going to help our particular child: (a) do we think that our child is actually underconnected, and if so can we figure out which connections are problematic? (b) if our child is underconnected, do we have any good ideas how it happened so we can try to do something to make sure it doesn’t worsen? i.e., is this an autoimmune disease? if it is, should we follow an anti-inflammation diet? etc. (c) once we address whatever is preventing the connection (as best we can, which is maybe not at all, although I personally have become a true believer in the fish oil for some children), what sort of activities can we engage in that will help them to continually strengthen their personally problematic connections? Of course I haven’t even read what these DSM people are discussing and I’m sure they are all very smart folks. BUT. Is it really helpful to try to create all these categories? Really? I just think there is no *there*there. Oh, and you may be interested to hear, if you haven’t already, that they have demonstrated (as I understand it, to the satisfaction of conventional medicine, for what that’s worth) that there is a subpopulation of children with ADHD who most certainly mature out of it. These kids’ brains reach peak thickness (or something like that) about 3 years later than everyone else. Whether that’s analogous or not to PDD I don’t know, but I know that attention issues are often a big part of PDD and indeed it is often very difficult even for professionals to tell them apart. Did you know that according to something I read that 50 to 70% of kids with ADHD have some kind of language disorder? Very interesting to me. By the way, I mentioned the Mislabeled Child before, written by these very nice neurologists in Washington (nice enough that they emailed me back!) it is awesome for explaining all the different parts of the brain and how to identify the specific issues and tell them apart (like, e.g., prosody, by the way! multiple pages JUST ON THAT!), and even better, what you can do to help a child with issues in that particular area. But I would still like to really get to the bottom of what PDD is really all about. I wish I could stop time and then spend about a year or two doing nothing but reading and researching this stuff. Your blog REALLY REALLY helps though, because I don’t have time to find all these resources you give us!

  2. Lucas AW
    Lucas AW at | | Reply

    I know the point of this entry is serious and all BUT I think we all need to hear about you getting a lap dance. You always make me laugh so I can’t imagine how funny that story is! Is it true?

    I don’t know anybody with Autism where I’m from but I still come to your blog to learn about your story and your humor. Bless you!
    LAW

  3. Steven M. Shangreau Jr
    Steven M. Shangreau Jr at | | Reply

    This is one of the coolest articles I have ever read. Awesome John!

  4. Rob Zlomke
    Rob Zlomke at | | Reply

    I’m sitting here with a lump in my throat and a tear in my eye…’er a dust particle I’m guessing.
    Awesome article – absolutely love love love! The awesome thing is that over the years you had blogged/journaled and have it well documented – one day it will be an amazing gift to Noah.
    Noah is a remarkable young man and so blessed to have both you and Jenny on this journey. I know that it hasn’t been without its trials; however, look back and see what is done. Noah has been programmed to love, wait, what…love…now that is some real parenting skills and I hope that you and Jenny take the time to completely recognize this and then hug each other.
    Over the years I have had the opportunity to work with some amazing families and the repeated message that I hear – yes they are different but are being held to a high standard and to be the very best they can be.
    Reassure Noah again and again that he has the world and can be whatever he dreams.
    I’m not going to get crazy biblical on you or anything – but i recall reading a book about the lives of saints, etc and happened to be retold in a class – anyways, the message being given by the saint was that he would challenge the people that he was preaching to that by the end of the day we should all be so lucky to be exhausted from loving all day long. From the sounds of it, Noah has this one nailed!

  5. Mark
    Mark at | | Reply

    Amazing and powerful writing John, as usual. But I think you’re being too hard on yourself. Noah wouldn’t be the wonderful young man he is without you and Jenni to show him the way. He loves unconditionally because he has always been loved unconditionally. Be proud of Noah for being a great son. But be proud of yourself for being a great father.

    1. Keice
      Keice at | | Reply

      I think that yes, it’s fair. As long as you have the support syetsm (emotional, social, financial) in place so that you will be able to care for both children, and provide for both of their needs which may be very different. As long as one of the kids is not neglected due to the needs of the other child, I think it could be a pretty fantastic experience for everyone involved I am an autistic and adopted only child parenting an autistic only child and I think that the one thing missing from our family is another child. If I were to adopt, I’d lean toward adopting a child with autism, as I can’t imagine raising a non-autistic child or attempting to balance raising one of each (for lack of a better term). I wish we had the option to add another child to our family, but I feel like I’m strapped already (I have rheumatoid/autoimmune arthritis and spine damage). Hope this helps Let us know what you decide!

  6. Carol
    Carol at | | Reply

    As an mother of a child in the spectrum I feel your fears and guilt. You write to my heart.

  7. Kathy S.
    Kathy S. at | | Reply

    Thank you for being funny and honest and genuine and having the courage to share your story with the rest of us.

    I will neither admit nor deny that I sat and bawled huge tears as I read this. But just to be safe I am going to default to the ever-valid female excuse of being hormonally imbalanced.

    No – I don’t have any autistic kids of my own. I just happen to love several people who do and thus also love their kids, too. People like me need to hear your stories, too. The more we all get to know about each other the better we can be more compassionate. That has to be a good thing.

    So again thank you so much for writing. Keep it up and I will keep reading.

  8. Canadian Joel
    Canadian Joel at | | Reply

    I think you would make a great speaker/stand up comic! Funny and insightful stuff!!!!

  9. Alice Cartwright / Oathe
    Alice Cartwright / Oathe at | | Reply

    You’re my favorite writer! So glad to have found this blog.

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