The Short Bus Diaries » Confessions About Life With an Autistic Son

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Good Things: A List

Just a list. In case a random earthquake causes a mountain to pop up and stand in my path, I want to document a few nice things for the record. All of these things parallel my son’s transition into his new school (we’re still paying for it out of pocket, and driving up there four times a day, because DCPS is refusing to follow a legal order, but that’s a separate problem). This list is about “yay” things.

  1. My son is potty trained again. Two weeks after we placed him at his new [private] school [specializing in working with autistic kids], my son no longer needs a set of eyes on him every single minute of the day, in case he decides to leave me a gift on the floor of his room. No more throwing out underwear, or hosing it down in the front yard while cursing life. No more praying that I could just get the french fries out of the oven and the chicken nuggets on his plate in time to run upstairs and prevent a huge mess. We even took him to a friend’s pool this weekend without worrying about any embarrassing exits and explanations. This is equivalent to a rope being thrown down to us after being stuck in a well of self-exile for four-five months.
  2. My son is trying to speak again. He looks at us so earnestly, begging us to understand him and respond to his still very limited vocabulary. Sometimes it’s so hard to say no to him, when he wants to go “ow”, but it’s 105 degrees out or 8pm at night. I want to encourage all of his efforts and reward his requests, but can’t, for obvious parenting reasons. But the sounds and eye contact fill me with hope.
    • Two days ago, as I was dragging my sleepy son up to bed, I asked him to say “Goodnight Daddy”. And ya know what? This boy, who has muttered nothing but single syllables since I don’t know….February of this year…casually said “guh nuh da”. Obviously, this is miles from where he needs to be in order to get around independently in this world. But it almost made me cry. It’s a sign of things to come.
    • He experimented with using the word “no” earlier this week. He used it tentatively, but appropriately. Perhaps this is a sign that he will one day be able to answer a question and also advocate for himself.
  3. My son wants to cuddle more these days. He has always been a kid who likes affection (and I still remember when he would scream from his room “I wanna cuddle with Mommy!”). But this past year has been such a roller coaster ride of behaviors and exhaustion for everyone in the house. It feels like the cuddliness was reserved mostly for when he was really tired, had just woken up, or was sick. But lately, he hugs me from behind while I’m getting dinner ready, he readily comes up to me for kisses, he runs into my room every morning to wriggle closer to me and have me tickle his back and arms, and sometimes he even runs up behind me in the kitchen and tickles my back (hey — that’s reciprocal behavior!). I’m not gonna lie and say that on some days I don’t lock my bedroom door in the morning so that I can try and sleep a little later without being interrupted by the cuddle squad…but I usually feel guilty and let him in. Seeing him smile and relax while I sleepily wake up in the morning is a good reminder about the parts of parenthood that aren’t so hard.
  4. We are beginning to let go a little and relax. We’re far from being able to go out and eat together as a family in a restaurant, but we can at least sit down for five-plus minutes and not panic about what our son might be up to in another room. Out of habit, I still find myself dropping my fork and running around to investigate what potential mess he may have gotten into, but I often find discover that he is simply sitting on the floor, holding a toy. He’s still not playing with most toys appropriately (with the exception of cause and effect marble run -type toys). But the fact that he picks up objects and holds them again feels a little more…familiar, as a parent. He’s also not so fast to climb up on a chair and grab food that he will then immediately pulverize in an attempt to get it into his mouth before we can stop him. He seems to respect the rules now and is just plain…patient. My little boy is no angel, nor should he be at this age. But he’s no longer out of control. I really hope this peace lasts.

This is not the end. It’s just the beginning!

 

Away from It All

I’ve spent far too much time editing these photos and have no time left in the day to write anything mind-blowing.

I took these portraits over the weekend during a rare family day (because either I or my husband am always working) at Oxon Hill Farm in Maryland.

No matter what decision is issued by the hearing officer tonight, at least we had this day.

And some unedited, mostly unsuccessful shots that included me:

Elaine - May 28, 2013 - 8:07 pm

That you are able to smile at all is a testament to your strength and commitment. I hope the highlights of the day carry you for a while.

The Gift of His Smile

Every evening, when my son has reached his apex of energy for the day (read: screeching, opening and slamming the doors on his sister’s play kitchen, repeatedly pushing the buttons on all three of those damned refrigerator musical toys at the same time, begging/obsessing over food), we open up the doors of our kitchen and let him escape to the cramped but blessedly functional back “yard” of our home. The word “yard” is more of a wish than a reality. It’s a loose concept of a place that is fenced in and that sits behind our house, but in no way resembles a stretch of grass with trees and room for sprinklers, patios, flower patches, swing sets and summer parties. We have, however, managed to jam a very large, top-of-the-line trampoline back there.

I love this trampoline. And my son loves it even more. He can jump for two hours straight on this, while we cook dinner, file insurance paperwork, spend time with our daughter, and just generally reacquaint ourselves with a bit of mental space necessary to make it through the end of the day. When he’s out there, I can hear him happily screeching, jumping above the top of our wooden fence so that the entire neighborhood can see (and hear) just how damned happy that trampoline makes him.

But what fills my son with even greater joy is to jump “in tandem” with me. He constantly comes back into the kitchen to check on me, attempting to pull me back to the trampoline with him, saying something like “juuuhh” to approximate “jump”. Reluctantly and exhaustedly, I climb up onto the trampoline (the word “awkwardly” should also probably be thrown into the mix) and start jumping.  My son then immediately comes in close to wrap his arms around my hips. This is the signal for me to start jumping for the two of us. So I begin. Our bodies are locked together so that, despite our height and weight differences, my son and I can hit the trampoline with our feet at the same time, followed by a leap into the sky at the same rate. It’s this beautiful little dance that I’ve perfected during the past six months.

And you should see the smile on this kid’s face. He loves it. And he loves me. Even though he may have turned his face away from mine 10 minutes earlier, inside the house, when I demanded a kiss, and even though I may have yelled at him five minutes before that to stop screeching at that brain-piercing pitch, my son still wants to be with me, experiencing the wonders of gravity in sync with me.

At this moment, when my son is fully engaged with me and the world, his smile looks just like it did when he was eight months old. It hasn’t changed a bit, save for the full set of teeth in his mouth.

After my son was diagnosed with autism, I remember being told by several people to remember that this boy — now living with this new label — was still the same boy I had known and loved only the day before receiving the diagnosis. He hadn’t changed, and I needed to remember that. This is one of those quickly proffered, pat-on-the-back, atta-girl kind of phrases that come from well-meaning people who don’t know what else to say. But the truth is, no matter how hard I tried see things that way, I couldn’t shake free of the new lens I would be looking through for the rest of my life. That label does make a difference. And once those autism glasses were sitting on my nose, they started to bring the short history of my son’s life into a different kind of focus. That label — in addition to shifting the entire course of my family’s lives — explained stuff. It warned me about stuff. It symbolized everything that had led up to and would follow that moment of diagnosis. And even though my son didn’t possess that label in the beginning of life, that fate was still dangling over his head, just waiting for the perfect moment to steal him away from us and rob us of a normal life.

But when my son smiles like that on a trampoline, as our bodies bounce together in that synchronized, blissful, utterly simple way, those glasses fall off of my nose for a few minutes, and I can look into my son’s sparkling eyes and see the world as I once did, up until October 22nd, 2010. I feel light and full of hope, and can believe that everything is going to be OK in the end.

Although my son can’t give me much in the way of gifts, I need to remember that he does offer me this one, every evening. I just need to gather up the energy needed to go outside and accept it.

Lacey R - April 26, 2013 - 12:41 pm

Your BEST. POST. EVER!!! Loved this story and peek into your life, Maya.

Ginny - April 26, 2013 - 12:59 pm

Our autistic son – loves his trampoline too! He is 8, and has a typical sister – I so relate to your post….we spend alot of time and resources on our son, and have to make sure we don’t ignore her needs – especially an 11 year old girl! Our life changed as well when our son was diagnosed at 4….it is not an easy journey…thanks for your post!

Maya - April 26, 2013 - 1:01 pm

Thanks Lacey!

Jennie B - April 26, 2013 - 3:32 pm

“…screeching, opening and slamming the doors on his sister’s play kitchen, repeatedly pushing the buttons on all three of those damned refrigerator musical toys at the same time, begging/obsessing over food”

This is my son too.

And his smile is also perfect.

Lizbeth - April 26, 2013 - 11:10 pm

Sometimes the smile I get from my son is all it takes, when things are hard, to turn things around. Hat smile changes everything.

Sarah - April 27, 2013 - 10:22 am

such a sweet post! Smiling is magic!! PEACE

Sallie - May 7, 2013 - 10:45 pm

I’m sure you’ve probably heard of it, but on the off chance that you haven’t I wanted to pass it along — the Aid For Autistic Children Foundation, which offers debt relief for debt **already** incurred treating an autistic family member (up to $150k, I think):
http://www.aacfinc.org/understanding_autism.html

As a disclaimer, I have no link whatsoever to this foundation — and heard of it only recently, when a dear friend received literally life-changing assistance from them and thought of your blog.

Dear Woman at the Park

I was informed this morning by my husband that another mother in our neighborhood – even though she had never met me or even communicated with me via email – did not consider hiring me as a photographer because she thinks I’m “so negative”.  What follows is a lengthy explanation of who I am, if only I could send it directly to this mother.

Dear Mom-Who-Does-Not-Know-Me-But-Judges-Me,

Apparently I bum you out, even though we’ve never met. You probably know of me because –

  • I run a photography business on the Hill that gets discussed – dare I say, recommended – on our local, all powerful parent list-serve
  • I recently spoke out on said list-serve about an ignorant mother who made offensive comments about special needs kids and inclusion classrooms
  • The Hill is a small neighborhood that acts more like a small town, where people get to know people through park-based conversations, whether or not they have actually interacted directly with that person

In response, I offer the following:

My life is hard. I’m guessing that my life is harder than yours (and yes, I know that it can always be worse). It’s harder than a good number of people in our community by virtue of the fact that I have a five year old moderately – possibly low – functioning autistic son who requires ~$50,000 in therapy outside of his public school to bring him up to the level of an 18 month old, where is currently ranking.  I know that you think that you would handle the burden better than me, or at least put on a smile at all times when you leave the house. I am fairly confident that you think that autism is akin to some sort of learning disability along the lines of dyslexia, one isolated thing that should occupy only a small part of a my life, and that I should be able to package this one thing away neatly before stepping into the public sphere.

And with the barest minimum of respect I can offer a woman who does not know me, but who also does not hesitate to judge me, I can tell you that you will never “get it”. And if you spent one day in my shoes, you would look at me with actual respect and think that it is pretty darned impressive that I get up each morning to fight another battle, that I don’t lock myself away in my bed and declare defeat, that I push up my sleeves, work 70 hours a week, pick up the toys, clean up the house, and say thank-you to the barista who hands me that precious steamed chai latte I allow myself once a week.

Do you know what it’s like to live in a home that is battened down like a bomb shelter to prevent my son from obsessing over and accessing things that he should not? We’re not talking about keeping a curious toddler away from the cleaning products under the sink. I mean that if I fail to correctly time the act of taking out the garbage and simultaneously open the front gate too early, I round the corner of my house with my garbage cans and startle to the sight of my barefoot son wandering out into the street at 8pm at night in 30 degree weather, oblivious to traffic, the cold, and the fact that he is leaving his safe home behind him.

Do you know that I have to listen to the footsteps of my son at all times in my house, to ensure that he has not sat down on the toilet without adult supervision? Because if I fail to catch him in time, if I am thinking more about cooking dinner, or putting groceries away than I am about the 10 possible actions my son might take while out of my eyesight, he might smear his poop all over the bathroom and then lick his fingers.  Do you know how often I have to shower my son off completely and throw away his underwear, because the mess is too extensive to wipe up?

Do you know that 75% of the conversations that take place between my husband and myself these days consist of negotiations about who will take my son to which OT/pediatrician/psychiatrist appointment, which lawyer/advocate/non-profit/reporter we will be meeting with on which day? Do you know that at any given minute of the day, I have no idea where we are going to live or what strategy we are going to pursue next in this ongoing public relations and legal battle we are waging on behalf of my son, and that this fight sucks every remaining piece of mental energy I have lying around, after cleaning up the bathroom for the third time today?

Do you know that I have a third job filling out insurance claims, getting Medicaid authorizations for his appointments, and negotiating payments between our providers and Medicaid? Throw in at least 2-3 weekly pleas to public officials and other potential allies in our efforts to save our son before his brain apparently locks down around the age of 8 or 9 to any further interventions.

Do you know that my son does not play with anything, cannot ask for much in this world besides water and a cookie, and instead pushes or drags me everywhere in my home to the extent that I literally cannot rest for a minute in my home when he is not with one of our four in-home therapists? This is because he doesn’t know what to do with himself and cannot be occupied for even ONE MINUTE with a toy, or TV, or a book. So instead he humps, screams, bites my daughter’s hair, laughs maniacally while jumping on the couch, pulls the toaster off the counter, or launches himself in a continuous run between the two ends of our house until he is sweaty and perhaps a tad bit more regulated?

Do you know that when we have guests over, I literally have to physically block my son from their plates and their bodies, because he has decided to obsess over their food, or their neck, and will not be able to stop himself from climbing onto their bodies unless I block my guest into a corner and sit in front of them with a chair? Thus, we rarely invite people into our home, further isolating ourselves from your world.

Do you know that I cannot take my son into any public eatery that is too small or too quiet, in case my son steals food off of somebody’s plate before I can stop him, and I figure out that I am too late, when I hear a woman screaming at him and turn to see the entire restaurant staring at us?  Do you know that I cannot go to most public events, most stores, any libraries/movies/plays and otherwise standard family activities/outings/events because my son will scream/take your child’s cookie/run out into the street/disrupt the performance/not be able to sit in his seat for longer than one minute before we have to leave?

Do you know how weary I am? How trapped I feel in our home, because of autism? How sad I am for my daughter, who will most likely become her brother’s keeper when I can no longer do so?  How painful it is sometimes to see other families doing absolutely normal, non-spectacular things on their Sunday afternoons, posting about their lazy weekends on Facebook, and know that my home is a battlefield and that any bold adventures out in public can be harrowing, embarrassing, exhausting experiences that make that embattled home seem infinitely better than the unpredictable, unprepared outside world?

No, I bet you don’t. And I bet you think you would handle things better than me. That you would have a sunnier disposition and thank your God every day for the food on the table, the roof over your heads, and the fact that you don’t live in some Third World country. And most importantly, you think you would accept this minor “learning disability” called autism, that you would not have your child any other way and not wish that things were different or better, because life’s challenges are learning experiences that make you stronger and yada, yada, yada.

Well I disagree.  I think I’m handling things the way anybody would in my position. And the fact that I can get out of bed each day, take beautiful photos of other people’s children, make an occasional joke, take my daughter to a music class once in a while, and meet another mom for a rare drink every couple of months demonstrates that I am doing a pretty darned good job of handling my life. I’m so sorry if all of this is a bit too “negative” for you. Perhaps you could give me some tips on how to do a better job. Would you like to come over for a play date this weekend?

This is the version of my son that I show the world. This is a single photo out of many others that I discarded. The other 95% of the images captured a boy who looked spaced out, had his mouth half open, and looked in the photos as unresponsive to my requests as he was in the real life, as I pleaded with him for one decent shot for his Valentine’s card.

This is the version of my son that I usually end up with in 95% of my shots. He is not aware that there are any demands being placed on him. His face is dirty. He is off in his own world, unaware and probably not caring about all of the rules and civilities that the rest of us use to get through the day.

I’m probably not doing myself any favors by showing people the first, fully edited, “happy” image rather than actually displaying a more truthful depiction of my son.  But people don’t like the truth. Because it’s too “negative”. They’d prefer the edited version of both my son and our life.  And apparently even my attempts to edit autism from the public sphere and from my social media persona are not as thorough as the woman at the park would like them to be. However, I don’t really feel like apologizing for the truth, and I do believe that I’m done keeping the truth out of your world.

Thank-you for encouraging me to be entirely honest. I guess, in the end, you have set me free, Mom-Who-Does-Not-Know-Me-But-Judges-Me.

Adrienne - February 4, 2013 - 8:18 pm

Well said. You’re kicking ass and taking names and it’s HARD. I’ve been hit with those: you’re so negative; look on the bright side; just enjoy your son! Gag. My kid’s prognosis is lousy and I reserve the right to hate it and to struggle when I need to struggle. But people don’t understand, and worse are the ones who don’t try to understand. Worst of all are the people who judge.

Patty - February 4, 2013 - 9:25 pm

That anonymous woman, in my opinion, is the one who is negative. After all, she is judging you, someone she barely knows, instead of getting to know you. This is a terrific post. So honest and raw and spot on.

Debby - February 5, 2013 - 7:27 am

Aren’t we lucky that we are typically spared interaction with people such as this? Because we don’t have time to judge others’ lives even if we wanted to. Love…

Sunday Stilwell - February 5, 2013 - 7:30 am

I have run into this issue MANY times. I think as an autism parent we all do and I wish that made it easier to stomach.

It doesn’t.

I get tired of feeling like I have to educate the world around me. To make them bend to accept my sons for who they are.

You keep doing what you have to do and don’t ever apologize for it.

Also, let’s have a playdate SOON. Please.

Dorie Howell - February 5, 2013 - 12:50 pm

First of all, that is not a woman anyone would want as a client. So no love lost there. Let her find her “positive” photographer that will give her warm and fuzzies and also mediocre images. You are doing great under the mantle you wear every single day.

Elaine - February 5, 2013 - 3:27 pm

I only met you in person once – when you gave an incredible amount of information in a condensed period of time on photography. I could tell you were nervous about something going on in your home, but even with whatever must have been going on – you were awesome. And your images are awesome. And it is so unfair that someone thinks they can judge you. I wish we could all operate under the framework that every other mom / person / business owner / child is doing the best they can. It shouldn’t be this hard. I hope the world becomes a more accepting place.

K - March 1, 2013 - 4:16 pm

To negative is offering an opinion of your business/ you to your husband while he’s on a family outing. Who does that? It’s pretty hard to think of a socially acceptable context.

Mom-In-A-Million - The Invisible Boy - March 11, 2013 - 9:34 pm

[…] about sitting there with his arms and legs resting on the rope relaxes him and quells the constant stimulus seeking activity that keeps his parents on their toes lest he break something or hurt himself or steal food off a […]

Ellen - March 14, 2013 - 2:53 pm

If you have never met her and never even communicated with her, why do you care so much about what she thinks?

I’m a small business owner, and people choose not to hire me for all sorts of reasons, some reasonable, some completely stupid. It comes with the territory. Some people will like me, some people won’t. That’s just the way it is. It’s a waste of time and energy to obsess over these things.

Maya - March 14, 2013 - 3:00 pm

I actually haven’t been obsessing about this woman, and that wasn’t really what I was getting at, but perhaps failed to successfully convey. The imaginary conversation I had with this woman is a stand-in for what I would say to anybody who has ever judged me as being too negative, whether it’s in a business context or otherwise. In fact, when people ask me how I am, I wish it was appropriate to tell them how I really am, and how my day is really going, because oftentimes I’m having a hard time. But for the most part, people just want to see the nice stuff, hear pleasantries, and not dig too deep into what special needs parenting is really like. In contrast, if all of us special needs parents had the guts to really tell people the truth, it would likely make the other person feel very uncomfortable, either because they really don’t want to know or because they have no idea what to say in response. So this is me, responding like I wish I really could, when similar situations arise [that have little or nothing to do with business].

[…] son’s “version” of autism, as I’ve mentioned previously, is not a small part of who he is. It’s pretty much everything–at least right now. I […]

Love is Complicated

A friend once asked me – and she was asking this as a long-time friend who knew that I trusted her, and with whom I shared a 100% honesty rule – if I loved my son less than my daughter because he is autistic. I considered the question seriously. After all, this was a friend who worked with special needs children and their families, who understood me deeply, and a person that I knew would continue to like me, even if I offered up a brutally honest, unfair answer.

I told her “no”. I loved my children in equal amounts.

However, the form my love takes feels different for each child.

(Now let’s subtract the default love from the descriptions that follow. Although this is unfortunately not the case for all parents, I do have that automatic, “I-gave-birth-to-these-children-they-are-a-part-of-me-and-they-are-beautiful-little-human-creatures kind of love. I mean, really. They’re my children. But let’s just call that an argumentative assumption and move right along.)

My love for my daughter is easy. She is an extremely intelligent, personable, chatty child who regularly squeezes me tightly and kisses me on the lips and tells me that I am a “great mommy”. She plays with toys, entertains herself a lot of the time, and can be trusted not to take a muffin out of some guy’s hand at the coffee shop. Who wouldn’t love a child like that? It’s so easy.

My son is extremely affectionate, easy on the eyes, and clearly loves us the way we hope our children will love us, when we are pregnant and wondering what our children will be like. Who couldn’t love a boy like that? However, he is very difficult to manage, consistently oblivious to “the rules”, and unbelievably (and you need to come to our home to observe this to actually understand just how much our lives are dictated by this) driven by his urges and fixated on doing whatever it is that he wants [NEEDS] to do.  Thus, to love him is to love despite his life-disrupting behaviors. On the other hand, he is so eager to please, tries so very, very hard to utter the words that we practically pull from his mouth, and is so sweetly dispositioned despite the endless demands we and his many therapists place on him. It is impossible not to love a boy like this.

autistic son, love

Consequently, my love for my son is less easy and more “fierce”, which is the word that came to mind when I was first considering my friend’s question. My love for him pours out of me in very physical ways, partly because he loves the tight hugs, and partly because my love is jumbled up with this endless need to protect him and to battle on his behalf. And the battles include both the one we are in with the public school system (more on that another time) and the battles against his urges and out-of-control sensory needs that get in the way of his education, his ability to sit still for dinner, his bathroom needs, his ability to not run from us in public places, and on and on.  Just typing these words makes me want to go find him and squeeze him tightly. In fact, I always experience this duel need to shield and to fight, when I think about my son.

Yup. Fierce.

The other component to all of this is how my feelings toward my son shift throughout the day.

In the morning, when he is sweet, soft and slow-moving, I want to hold him, swing him, and be with him.  Those feelings emerge sometimes later on during the day, when I see him making a connection with me, a toy, his sister, the use of a word. I feel proud of him and want him to feel (physically, so that my intentions are as transparent as possible to him) my pride as I squeeze and kiss him.

But on those days where no therapist or school bus comes to relieve me (or my husband), when he simply does not know how to entertain himself, aside from eating, swinging, or jumping, and he literally follows me from room-to-room, pulling on my clothing, pushing my body towards whatever it is that he wants, when I simply cannot tell him for a fifth time in a row that he has eaten enough snacks and cannot eat anything else for a little while…when I cannot sit down for more than half a minute before he is yanking my hand away from my food, my phone, a pen, my lap…climbing on my neck, repeating sounds that make no sense to me…  I want nothing more than to be so very, very separate from him. I cannot wait for someone to pull him off of me and occupy him for an hour so that I can have my own body and mind back.

And then, at 6pm, when he is running back and forth through our row house, giggling madly and leaving none of us alone in our chosen activities (pulling on my daughter’s toys, opening up the refrigerator that I left unlocked for one minute while I poured some milk, pulling my hands away from my phone as I type an important message, dropping food all over the house, screaming, screaming, SCREAMING)…I cannot wait to give him that sippy cup full of medicated milk that pulls him down gently into a deep sleep until 5:30am.

But then, while the medication is taking effect, and he is curling up next to me on the couch, making his back and arms available for soft tickles, I want to be so physically close to him once again. And after the bedtime routine is complete, and we cuddle up together in bed. I drape my arm heavily onto his back and hold his hand to let him know that I am there, that I am ultimately his…that he is protected and loved, despite how crazed and anxious I may have felt only two hours earlier.

Later, I cannot resist checking on him several times before I myself go to bed. I rearrange his blankets, stroke his hair, kiss his warm cheeks, and call him my “Baby Boy”.

The day ends and the cycle begins again.

Niksmom - January 23, 2013 - 3:38 pm

This was just lovely. Beautiful.

I’m not sure how you did it, but you just perfectly summed up my feelings for my own son. The ferocity of all of it. Every minute, every up, every down…SO.INTENSE.

And I wouldn’t trade it for the world if it meant not having my boy with me.

M o r e   i n f o