Even as I am having a completely inane conversation with this mom I just met I am watching. She has no idea where her child is or what her child is doing, and the truth is, that is okay. Her child is 9, maybe 10 years old, and despite being a bit of a spoiled brat, can handle herself just fine with all of the other kids here.
Meanwhile, I am watching, half turned away from the droning mom, half listening to what she is saying, fully aware of where Brooke is, what she is doing and gauging the immediate potential pitfalls that surround her.
Brooke starts to move toward another mother and her baby, I take a step away from verbal diarrhea mom before Brooke moves in a different direction. I relax my shoulder and nod at some senseless question the yapper has asked. She says, “right?” with a lilt at the end, unawares I have no idea what she has asked me, but thinking I must be in total agreement.
I finally excuse myself as Brooke starts to wander off to a new location.
“So good to see you, thanks for listening” she says, “I feel much better about that situation.”. I nod again. I have no idea what she is talking about.
***
Katie wants to show me something.
“Look,” she says, “watch me do this.”. She dives under the water to perform some sort of gymnasticky move, but I am only half paying attention. I am watching Brooke as she bounces through the water in a different part of the pool, weaving her way in and out of the crowds of kids.
Each time she bounces particularly close to another child, I can feel my body move slightly toward her, at the ready to help facilitate conversation or diffuse inappropriate behavior.
“Did you see it Daddy?” Katie asks as she pops out of the water.
“Very good,” I say, not sure what she did or how well she actually did it.
“How would you rate it?”
I pick 7 because it gives me an opportunity to ask her to do it again to see if she can do it better, never mind that I didn’t see it the first time. She looks disappointed.
“Do it again,” I say. This time I fight the urge to turn my head toward Brooke the moment she goes under the water and watch as she does a perfect underwater somersault. She pops back up.
“How was it?”
“A 10 baby, definitely a 10.”
She beams with pride and says, “now watch this!”
The moment she goes back under water, I frantically scan the entire pool for Brooke. It takes me less than a second to find her, but it is the longest sub-second of the day. She is working her way to the edge of the pool to go down the slides.
“How was that Daddy?”
“Pretty good Kat! Listen, I’m gonna go over and make sure Brooke stays in the line for the slide, okay?”
“Oh-kay,” she says, making no effort to hide her dissatisfaction.
***
I envy parents of NT kids sometimes. Sure, they have their worries about their children, but honestly, when I’m at the pool or the park or a birthday party or any place with a plethora of children, I see them turn off their Kid-dar (closest thing I could come up with for Kid Radar). They fall into deep conversation because, well, they can. Their children can navigate the social seascape with little or no problem.
Meanwhile, I watch. I always have one eye on Brooke, and if I need to take my eye off for more than a second, I am fighting the urge to turn back. I can’t give my older daughter full-attention for Christ’s sake. Even when Brooke has a playdate with an NT friend, I feel I must be paying attention to every word, every action.
It is so tiring. I’m so tired. Tired of watching, tired of listening, tired of not being able to take part in inane conversation, tired of pretending to be paying attention, frantically trying to piece together bits and pieces of a conversation into something coherent.
***
The only time I don’t is when she has a playdate with either one of two of her friends who are also special needs kids. They get each other, like REALLY get each other. When her friend L comes over, I feel perfectly fine letting the two of them play alone in the play room or in Brooke’s room, because, well they play. The same with her friend D.
***
Last week I spoke with another dad. His child is much older than Brooke and swims at the deeper end of the Autism pool. His child has very few words. Were she neuro-typical or only mildly brushed with autism, she’d be getting her drivers license this year. There is no rest for him or his wife. I could sense his constant vigilance even as his voice conveyed defeat and weariness.
***
A lot can happen in 5, 10, 15 years. Between advances in science and changes in societal views, the world could be a much different place for Brooke when she reaches driving age than for that dad’s daughter, but I know I will still be watching…I will still be weary…I will still only be half listening…
Run Luau Run 
And I know that there is absolutely nothing I can say — except as always thank you for sharing of yourself, your family, your experiences so freely. Because we all learn every time you do. (And send support your way, always.)
I m in deep empathy with you.
My son isn’t special needs, and I’m on constant vigil as well. Long story. so many thoughts. i know you’re tired. I can hear it everywhere from you. talk soon Luau.
I hear you, and I understand. It can be exhausting maintaining that vigil. But you wouldn’t ever do it any other way, and your children are lucky because of that.
Brooke is lucky to have a Dad like you.
Awesome post. Thanks for the reminder that we are not alone.
All I can say is me too! Now go for a run and try very hard to just listen to the sound of your feet hitting pavement. Don’t think just tune in. It may relieve some stress temporarily.
Well said and I have had very similar experiences. It is exhausting on so many levels. My son will be 16 in December and the thought of him driving is almost as terrifying as the thought of him not being able to drive. Not sure if he will be able to achieve the ability to operate a car but I know the quality of his adult life will be greatly impacted by his ability to drive or not to drive…..
We live parallel lives. Thank you for sharing your gift of insight and love for your family. This is a wonderful post in many ways.
Talk about hitting the nail on the head.All my friends who think I need to improve my listening skills need to read this post. When I stop my son as he heads towards a baby and other parents say “you must have eyes in the back of your head” all I can think is no,but that would make life easier. Perfect words Luau.
i get it. we have very few people Sammy can just be with. I miss being able to focus on something for more than a nano-second.
DITTO! The most exhausting days of the year are the two school picnics, trying to keep one eye on my autistic 7 year old and the other on my daredevil 4 year old, who invariably go in different directions, with 400 other kids running around. I talk to no grown-ups (except one for about 2 minutes, because she is busy trying to do the same thing) and feel very anti-social. One reason I like running: it’s just me, going in one direction, with both eyes looking forward (and scanning for bears). Still looking for the magic playdate.
Ah, yes. My eyes never leave my son. He’s five, a runner, and can disappear in an instant. We are always hyper-vigilant. I’m sure people at the park (when we dare to go) think I’m the worst kind of helicopter mom. But I can’t be more than 2 feet away from him ever. At home, he climbs everything, so there too, I’m never far. It is exhausting, and my NT girls is always hearing “I have to go check on W” or “in a minute.”
I don’t think people who don’t live this can ever really understand.
Holy cow. That’s MY life you’re writing about!
I am learning so much from you Matt, by reading your blog. Brooke is SO lucky to have parents like you guys….
Love this Luau. You’ve captured something I was trying to describe just yesterday. We are currently on our first family vacation; with our two on the spectrum (how I envy you and Jess your Katie – but, moving on…) and I was trying to describe how draining it is to be “on” all the time (not on like funny, just on as in alert). Our B&B host, whom we’ve known since prekids and pre-kid-dar, who knew us as laid-back interesting people says “I sure hope you get time this week to relax”. Um, right. Ha. Me too.
Dude you go away from this blog for a while and then, you come back with a vengeance….can’t tell you how many times I have done the half listening, okay half caring chat, truth be told.
Glad you are back, you have been missed.
Sounds like my visit to the grocery store today. Yes, always watching.b
The thing that always amazes me about you is your level of devotion. And yet still, you have not lost yourself. While I know it feels like you are half-assing, so to speak, the attention you give your other daughter, it is very evident the love you have for both. I’m not a parent of a special needs child but my cousin is autistic. His sister is basically a vegetable at 18. And the middle child is “normal”. There is always competition to be seen, to be heard, to be loved. And yet, I know when he gets older he will understand how much his parents loved him, how they respected him, how he made their lives a little easier just by being. I know this experience is draining. It takes a really special couple to raise a very special child, let alone two (because “normal” children are special too and so many people forget that. You have not!!!)- which you and Jess do. Please remember you are an inspiration. You may feel like you don’t do enough for either or both of your children but to those of us who follow you, know you and read your stories, you truly are exceptional parents. EXCEPTIONAL. You may be tired and yet you selflessly continue onward. You make their lives special in a way you’ll never know because no matter what it will never be conveyed in words… Trust me when I say, in the end you will raise some of the most beautiful children inside and out who knew every minute that they were loved, that they were part of a special family whose love knew no bounds and who will be so successful in whatever paths they choose.
I couldn’t agree more. I have been trying to think of a nice comment, but words escape me. I’m thoroughly and completely impressed with Luau, and what I’ve seen of his wife.
oh yep, you are definitely describing life outside the home for me and my family, well said
Reblogged this on ImaWestie and commented:
Luau writes about keeping watch.
https://runluaurun.com/2012/07/25/vigil/
It’s a hard task for any parent when they have to keep watch over an infant or toddler for a few months, then to a lesser extent, a couple of years. Every now and then, they have to do it while their child is ill.
Those of us with kids on The Spectrum have to maintain that vigil. Some of us, “forever.”
I take my children to football. My youngest has Autism, is extremely active and physically capable, and can’t bear to stand still.
While the elder two are involved in the football parents suggest I get involved in some task or other – “I’ll watch your son” they say.
Two minutes later I’m back. “Where’s my son?” – “Oh, he was right here… where is he now?”
They just. don’t. get. it.
Our watch is constant.
I can completely relate to this. Thanks for putting it out there.
The CONSTANT VIGILANCE! (To quote Mad-Eye Moody) is wearying, and certainly stressful. The balance thing is tough too. I often feel the need to balance out all the attention Lily gets by giving one-on-one to Emma as well. Like a lot of things, I think it’s just another case of. . . ‘parenting on steroids’. All parents have to balance the attention needs of both kids so they remain fair. . . but because ONE of our kids REQUIRES attention, it just means a narrower tightrope with the other one.
You’ve so eloquently captured what I fruitlessly try to explain to my friends when they invite us to a get-together. It isn’t fun. It isn’t relaxing. It’s constant vigiliance. Thank you so much for sharing these feelings, as they mirror my own.
Your not alone… I feel I don’t give my 4 year old the same attention I give my 8 yeses old who is autistic but I know my 4sister year old can socialize better with kids better then my 8sister year old then get worried people will say things or tease him so my gaurd is always up for ..your not alone
❤ Tired..the word does not even come close. Keep your head above water.
I admire you, and I’m glad your daughters have you. You are so clearly a loving dad. I’m a 35 year woman without one, and I feel it every single day. You can be weary and frustrated and overwhelmed and defeated and sad and scared. Just know also that you are beautiful and amazing and needed and sensitive and phenomenal and loving. Times a million. 🙂 Sending you wishes for peace and strength. You and your wife make the world better, even for strangers.
you so eloquently put into words what so many of us feel…thanks for giving our thoughts the words…
I can relate! My son is 3 1/2 and my daughter is 14 tomorrow. I feel most of the time I have to spend to watching listening and trying to help Jacob or other people to understand what Jacob is trying to tell him. He sleeps for about 1-2 hrs a night without me having to be in his bed so that’s mine and my daughters time. My husband and I recently separated and it wasn’t a plesent split so trying to keep Jacobs routine the same as possible (hasn’t even asked where daddy is cause he never spent time with him) and helping my daughter work through her feelings has been hard. Thank god my daughter is such a big sister..she is his second mother so most of the time she understands when my focus has to be on her brother a lot but I can’t help to feel horrible!! I wish I could be there for her as much as I am for her brother,tomorrow is her 14th b-day so we r going to my parents to celebrate so they can help with Jacob so Mackenzie can have the attention she needs and deserves for her day! It’s tough and it sucks but hang in there.
Yes, Luau, us too. Thank you for putting words to what we’ve been feeling for years. I’ve shared this post to help our family and friends better understand what we go through everywhere we go. Thanks for sharing!
My husband and I do this with our son who’s 6 now. We want to know what interactions he’s having in case he has trouble explaining something to us, in case there are issues, in case we need to turn something into a lesson…always a lesson. We have to remind ourselves to breathe, to let HIM breathe. Thank you for sharing this.
Thank you so much for sharing this. After the day we had with our youngest Z, and how our oldest suffered from our lack of attention due to the situation, both my husband needed a reminder that we are not in this alone! Thank you for sharing your experiences!!!
I feel you. I have a four year old son who swims in the deep end of autism. I work full time in a tedious job and go home to take over watching my son from my wife. She has it worse than me as she is with him all day long, constantly on guard. We dread going busy places as he becomes completely unpredictable and I know the looks we get from passing people as we try to deal with his behaviors while exposing him to the world.
I understand about never being able to just lose yourself in conversation or just being able to relax for a moment in public. I know your exhaustion. A hundred people before me have said what I’m about to repeat and they said it because it’s true: your daughters are lucky to have you. Despite feeling that you’re not giving Katie the attention she needs and deserves, you are the right person to be their dad. Keep on loving them and keep being there the best you can and they will love you forever for it. Remember, they are worth it.
My son is 20. Moderate to severe autism, ADHD, OCD, MR. I understand the constant watch. I’ve got 20 years surveillance under my belt. I’m confident I could work for the government in covert ops at this point, so skilled is my watching and predicting what is going to happen. It’s exhausting. It’s rewarding. But mostly exhausting. I wouldn’t change it, because that would mean changing who Cody is. But I’d love to be able to let him play in the yard without the surety he will wander away. I’d love to be able to turn him loose on the playground with the confidence that this time he’s not going to grab somebody just ’cause he likes them and try to play. He would never in a million years harm a child, but when a big laughing boy grabs you, I can see where it might be scary. So I watch, and I herd, and I avoid. And I cry. And I laugh. And I wish I didn’t HAVE to do these things. But I do. It’s who I am. It’s who we are. I feel for you. Truly I do. Been there. Watched other kids avoid my kid because he gets excited and acts inappropriately, jumping and flapping. Watched kids make faces because ‘he’s weird’. But I’ve also been graced with some wonderful children who just want to play with him. That don’t care he’s still in diapers and repeats the same phrases 50 times. Those moments are my saving graces. It’s those times I believe I can relax just a little. Stop holding my breath for 30 seconds and just let him be the wonderful child God made him to be. I am fortunate he is our only child. Therefore I don’t have to divide my attentions between kids. And I have friends who get it. And my husband and I take turns being in charge so the other one can be an irresponsible person for a day. It’s exhausting and fruitful and maddening and depressing and I wouldn’t trade it for the world. I guess what I’m trying to say is I’m behind you 110%. Being a great parent is tiring. Being a great special needs parent is so much more than that- physically, emotionally, intellectually. You are doing a wonderful job.
Honestly, I don’t know how you and parents of more than one child do it. DH and I are lucky. We don’t have to worry about dividing our attention. We have love for 10 kids, but dividing our attention seems like a juggling act we are not up for.
DH loves to take our son out on walks but we live in a city and our son is a “runner” Ugh. DH would carry him more than let him walk and I’d hear about it after our friends from church would tell me that they saw them walking and, yes, Ed was carrying Gabe. I always got on his case for doing that because in my eyes, just how is our guy supposed to learn to walk the streets if he’s not allowed to actually walk the streets? His answer was that if anything ever happened, he’d never forgive himself. How do I come back to an answer like that? I guess I just needed to wait for DS to gain enough weight so that he was not such a light burden anymore… which did happen.. We live in the city and family and friends just don’t understand the perils we face just going out to take a walk around the block. Cars backing out of driveways, with Gabe being a runner, and us never knowing when he will break away, we are holding onto him for all our dear lives. He’ll run up the block and we don’t know if he will stop at the corner.
I’ve had him to the beach one time… more because he has very sensitive lily white Polish skin that will burn…. It was great seeing him play in the sand and I did get him to go near the water, but I literally did not take my eyes off him.
I’m sorry you had that struggle. You are awesome as a parent and are doing your best. I can offer that there will be plenty of similar situations that will come up in the future and you will have the opportunity to maybe give Katie more attention…. It’s never too late… That’s something I learned with my own amazing kid.
Been there, done all that. xo
I do this too but never really thought much a out it or of how others see it. Thank you Luau for putting my thoughts into words. Your wife is not the only one with a gift for words.
love reading dad’s point of view, i will be sharing this with my husband, we totally get this….
I completely get where you are coming from. I have 2 daughters 8 (ASD, Dyspraxic) and 5 (NT). The guilt I feel over having to give the eldest so much focus and attention not only wears me down, but I feel it has affected my 5 year old’s behaviour and life irrevocably. There’s nothing I can do to change it, but I get exhausted from trying to be fair and share my attention equally and at such a high, sustained level. We do it, because we are great parents and we love our kids, But damn is it tiring!
Yep, doesn’t get any better as they get older – our girls are 13 and 15, at the deeper end as you put it, and the only time I can turn to the side is when they have a (carer) buddy with them. Even then I’m riding shotgun. Even then I can’t relax, not for a second.
I know the feeling, exactly! I have my ears n eyes on my son Caleb all of the time. I never know what he is going to do next and if I am going to have to intervene. I often find myself apologizing for being spacey in conversation because I am in “mommy-mode”. Unlike Parents of NT children, we cannot check out, not even for a minute.
thank you for sharing!
I understand completely. I have 4 children— the first 2 agreeably autistic with bordering Tourettes’s. Age 37 has made some advances. Age 35 has disintegrated into seclusion and oblivion. I did what I could, as I know you are, and continue to do so. There is no end— it is a constant job but that’s OK. They are my children — I love them and refuse to be afraid of them or the situation. I understand. You are doing the responsible, loving thing acting the way you do. It’s OK to get tired— nothing wrong with that. Don’t beat yourself up. Have faith that it will all get better— cause it will.
sigh. xoxo
Yes, yes, yes!! I get it. I get the guilt you have for not giving the NT the attention they need. But then the stress of waiting and watching, knowing when or if to intervene with your child on the spectrum, out somewhere, hopefully acting relatively “appropriate.” I was watching friends at a get-together a few weeks ago in awe…their two and three-year-olds were wandering around and it took both of them several moments to even wonder where they were. Of course, the kids were fine. There wasn’t the stress…there was the ability to really engage with people without having the other half of their brains wondering, scanning, checking. You have nailed so many people’s experience to a “T.”
thank you so much for this post! I know just what you mean; it really helps to hear someone else say it too.
You are not alone, and if I may, I’d like to offer a suggestion that has worked for me. Take Katie out on dates. Make a big deal about it. Get dressed up and go somewhere special. Even if it’s only once a month, or every other month. Put it in your calendar, talk about how you are looking forward to it, and then simply enjoy the time together. The other times where it is more difficult to give that time, leave her notes. Leave them in her bag, on top of her laundry, anywhere and everywhere. The connection with her doesn’t need to be lost.
You are not alone…..I know…..my husband knows….please know you are not alone….thank you for sharing your journey…..I will share this with my husband.
My son, 8, swims in the deeper waters of autism. We were at the lake today….you described my day better than I ever could have. What struck me odd about today is the way my husband and I have to watch our son….a childhood friend of mine was at the lake with his 18 month old daughter doing what my husband and I used to refer to as the “Toddler Trot”. Just trotting after your kid. The irony of it was that we have to do the “Toddler Trot” for our 8 year old.
Thank you for wrting what i need to understand.. my child is 19 now.. and guess what. still watching focussed,, caring.. with the added stress of her not being able to drive.. and with a baby due so soon. Will it be more of the same.. me tied up for another 20 years.. they say parenting is for life.. but sometimes.. its a life sentance when they cannot go and be themselves but always need an adult to care for them.
I was a little behind on your blog, but I just wanted to say that this is the true definition of unconditional love. It’s a beautiful thing.
Reblogged this on Everything Under the Sun and commented:
This blog post has resonated with me and I wanted to make sure I shared it. Luau writes about the constant “Vigil” that a parent of a child on the Autism Spectrum does.
[…] summer I wrote a post about the constant vigil I feel I must keep when Brooke is out and about in the world. The setting of the post was a local […]