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

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Can We Get a Psychic in Here?

This past weekend, my husband and I went to the Autism Now conference in Maryland.  Something I am beginning to learn (that I’m sure all of you more experienced Autism Mothers will nod in agreement with) is that there is a ridiculous amount of websites and organizations out there who deal with autism.  By “ridiculous”, I mean that it is ridiculously shocking that I didn’t know anything about this world until The Diagnosis, given that the planet of autism is so large.  Seriously. So many people working to figure this thing out, provide resources, cures, tips, diets, stories of hope (not enough stories of bitching about how much this diagnosis sucks, IMHO), etc., and the rest of the world walks around oblivious to it.  To our struggle.

But I digress from the original point of this post.

We met a lovely couple there, which made the conference that much more worthwhile (cause we already knew Medicaid ain’t gonna help the Middle Class likes of us), who turned us on to all of these do-it-yourself programs like –

Son – rise program

Growing minds

This couple, like us, cannot afford the oh, um, $10,000 cost of these retreats and private consultations.  No surprise there.  But I was given a big slice of cake for thought when I learned that this couple – much like us – works, sends their daughter to a SPED program in a public school, doesn’t plan on quitting their jobs, is on the GFCF diet, and…has implemented their own autism program in their home that they do 7 days a week after work.  We still have more to discuss with them, but we learned that they are combining the volunteered time of university students (in occupational therapy, speech therapy, special education) – who need a certain amount of time spent working with children in order to earn their degree – along with the passed down information from a parent who could afford to attend one of these trainings, PLUS an occasional $130/hour consultation from a local private school on autism, to construct their own intensive treatment program, alongside their day jobs and attention on their other non-autistic child.

Wow. 

This got me to thinking: should I give up my business to work intensively with Max, using a combination of all these methods, alongside a healthy heaping of “Can-Do”, “We’re-Gonna-Cure-This-Thing-a-la-Jenny-McCarthy”?  A better question to ask myself is:

Can I actually will myself to do this for 40 hours a week?

Or how about….

If I can’t muster up the will power (because I’m not a particularly good teacher, nor would I be able to separate the daily disappointments and frustrations from the necessary teaching tasks and goals), will I be assigning Max to a lifetime of autism that might otherwise be cured, if I wasn’t such a selfish mother?

I don’t know!  And I wish someone could tell me what program would work best for him.  That way, we could skip the stuff that is simply a waste of time and money.

Fact is, I’m not a good teacher.  Tried to volunteer my services one year at a city program and quickly learned that I was not helping anyone.

During my short-term Cure-Autism activities at home, despite my best intentions, I cannot keep a permanent smile on my face or maintain a constant eye on the Larger Goal when it comes to working with Max, because I love him so much and it hurts me to see him struggle (and frustrates me that whatever method I’m trying isn’t working).

So how could I possibly do this for 40 hours a week?  Alone.  In a room.  With Autism. And my son.

It’s the not knowing what combination of services that Max needs that is probably the second most awful thing about autism (after the realization that your child has autism, of course).  You’re just walking around flailing, ready to buy into any cure that blows by you in the wind.  It’s so hard not to a) get tempted to try them, because they cured so-and-so, so why not Max, and b) layer so many treatments on top of one another that you can’t keep track of what might be producing results vs. what’s a bunch of quackery.

So please, could someone send a psychic on over here, so we can finally get this show on the road?  That’d be great, thanks.

Oh, Happier Days

I’ve definitely been rolling around in the mud of self-pity, sorry, and fear lately.  I’ve also been wearing an Christmas-sweater-ugly cloak of anger.  I’m not really out of this hole yet, to be sure.  But Max is having a better day.  So I thought it wise to write something nice so that anyone reading this (is there anybody out there?) isn’t left to draw their own conclusions about what a terrible  mother I am to a kid who certainly didn’t choose to be autistic.

So first…my goal to capture a few shots of Max at this age where I feel like I can really see who he is?  Accomplished.  Sort of.  Not a lot of great eye contact with the camera, but that joy that is pure Max was on display.  (It’s hard for me to just keep posting these totally unprofessional snapshots, but hey.  This isn’t a photography blog, so take a deep breath, Maya….)

autism, autism mom, autism parent, autistic son, washington dc

Tractors are so awesome!

Autism, Autistic Son, Autistic Children,

Oh, if Giggles Could Be Conveyed Through an Image...

 

 

 

Isn't it awesome how Mommy planned ahead and put me in overalls for this clever "Farm Effect"?

Still refusing to look at the camera...

We survived our day at the South Mountain Creamery Festival in Maryland, where hubby and I briefly fantasized about living in a historic home for next to nothing in the middle of nowhere, where life would be easy, and cheap, and where….nobody would buy photography services from me or real estate services from my him….and we would probably have to open some sort of Etsy store online to pay the bills.

Elsewhere in our lives, we are giving up the GFCF (Gluten-Free, Casein-Free) diet.  Max’s school felt that we were simply throwing too much shtuff against the wall (compression vest, Ritalin, GFCF) and they have no idea who our child really is, since he’s buried underneath all of these half-crazed treatments that his parents read about on the Internet.  Fair enough.  They should see my personal collection of Occupational Therapy toys.

Seriously.  I could open my own OT practice with what I have desperately ordered from various websites.  Although I jumped the gun a bit and ordered tons of sensory stuff that Max has no interest in (anyone in the market for that vibrating hose thing? Those blocks with the colored liquid inside? Putty? A clackety wooden bell thing? Those vibrating cats on sticks for your mouth?), his favorites continue to be the decidedly low-budge IKEA sack swing, a $30 trampoline from Walmart, and a “crash pad”.  This pad consists of various pillows and beanbags that once used to gingerly support newborns I photographed, but which now serve as the only thing standing between our wooden floors and Daddy’s loving, but violent throws and squishes of our Dear Boy (otherwise known as “rough play”, “crashing”, or “prioproceptive input”). I guess the kid likes to go discount.  Really wish I knew that before I went nuts here and here.

So he’s off the drugs, the annoying/expensive/stressful special diet, and the $200 compression vest….And he has a good day.  Figures!

No, he’s not cured.

But he did stop obsessing over his bungee cord all of a sudden, now choosing to simply carry it around like a lovie.  And he did hang out with me on the couch and giggle madly when I did the Itsy Bitsy Spider on his legs.  And he did sit still while I gave him his Qigong Sensory Massage (OK.  I can’t give up on EVERYTHING!). And even though he’s upstairs in bed talking to himself and kicking the wall at 10:30pm, I somehow feel a bit lighter today.

toasty redhead - May 14, 2011 - 7:40 pm

Right on!

Gretchen - June 30, 2011 - 9:14 am

I was like you and over bought products, read almost every book on the market about therapies and parenting a child on the spectrum.
Long story short one thing that we could not live without was Melatonin.
http://www.webmd.com/brain/autism/news/20091012/melatonin-helps-autistic-kids-sleep
Highly worth trying. It has made such a difference in my son’s sleeping.

One and a Half Steps Back

So I am in a lot of pain.  And not the physical kind.  The aching soul kind.  I know I am supposed to be writing something uplifting about life with an autistic kid, something parents of newly diagnosed kids can gain some relief from reading.  But I guess:

1.  I’m still a “new” autism parent

2.  I have no clue where to find relief myself because reading about one amazing autistic child’s progress leads me back to that notorious saying “when you’ve met one autistic child, you’ve met one autistic child”. This is to say that your child’s wonderful progress indicates nothing about my particular child’s potential.

3.  I just want to cry, not be someone else’s shoulder to lean on, at the moment.

My friend Anna wanted to feature me in a local newspaper column.  She wanted me to send some average snapshots and then offer tips to parents looking to shoot better pictures of their kids. What initially started as an exercise in me cringing about my lack of photography skills quickly turned into a season-by-season photo biography of my son, Pre-Diagnosis, and After.  That’s how I see things now: Then and Now.

(I’m a photographer, but I wasn’t always one.  So please don’t hate.)

Here he is as a baby, when we gazed at his wondrous eyelashes and constantly patted ourselves on the back for having such a beautiful boy:

Autism, Son, Washington DC

And here he is on Halloween.  Oh, how we loved him in this costume – the “Cutest Little Dragon”, we called him.

Here is another image.  Now, I start to spot some vacancy in his eyes.  At the time, however, all I could see was my progress at photographing my little wonder, who was playing with some nice, clean toys that would soon become props in my studio…

And here he is eating ice cream with Daddy, a highly interactive child who was experimenting with words – albeit at a slower rate – and at least attempting to play with some of his toys.

And here he was being a goofball just last fall, playing with one of the few toys he did enjoy – a broom – and wearing some none-too-cheap cowboy boots I bought for him in Texas – where else?  (And yes, he looks a bit porn star-ish here, but this would be one of the last fun snapshots I take of him for a while…)

And then here he is last Christmas, when he wandered away from all of the present unwrapping and sensory overload, sneaking off to the quite kitchen to eat some stolen candy.  He didn’t want to join the group.  He didn’t want to play with any of the special toys Grandma bought for him.  At this point, we knew.  It was not the merriest Christmas.  And there’s no denying the fact that he was slipping away from us.

I tried to take some snapshots of him last night, during a rare family get-together, after noticing the lack of recent photos of him, compared to his little sister.  But after a few attempts, I gave up.  I can’t bring myself to capture him playing obsessively with a string/plug/bungee cord/insert-other-long-stringy-thing, as evidenced here, where he managed to find a kitchen apron string after we hid all of the other potential objects of obsession:

Where has my beautiful boy gone?  He still smiles and giggles when tickled.  He will occasionally utter a request for a cookie or milk.  And he miraculously potty trained himself (fingers crossed) over the weekend.

But he no longer says “Goodnight Mommy!”  joyfully, over and over again, from his upstairs bedroom each night.  He no longer announces his favorite objects as in “This is my lovie, Mommy”.  He no longer utters those echolaliac phrases that once drove me crazy!  He just mutters to himself in a language only he understands or gets satisfaction from. We’re lucky if can bring himself to say hello 1/10 times.

So yeah.  I’m in a lot of pain.  I’m back to that mourning period that I experienced when Max was first diagnosed last October.  My son who was once high-functioning has pulled back and gone deeper into himself.  He is now That Autistic Kid.  The one that everyone can recognize.  The one whose future suddenly looks a whole lot dimmer.

I’m angry.   I’m depressed.  I veer between wanting to see what our future looks like and fearing what I might find there.

Sometimes, I wonder if my son is even in there anymore.  Because right now, he’s closer to a giggling robot.

I want what so many other parents out there have when they worry about what sport to enroll their child in, or even that little Tommy has trouble pronouncing certain “th” words.  I want to have those normal worries, and not those big, dark scary ones about whether Max will stop speaking altogether, or whether he will be able to live independently one day.  I want him back, along with all of the hopes we had for him when I took that first beautiful sleeping baby shot of him.

Stimey - April 26, 2011 - 10:03 pm

He’s still there. And he’s beautiful. It’s okay to feel sad and worried, but remember that even if he’s not talking, that doesn’t mean he’s not communicating—and it definitely doesn’t mean that he has nothing to say. Some days, some weeks, some months are harder than others. Hang in there, okay?

Gretchen - June 30, 2011 - 9:23 am

You are most certainly allowed to be sad, angry, depressed. And any other feeling that rises up in you. As a fellow mom to an autistic son, I feel and hear your pain. It’s all too familiar. Allow yourself that moment. And then dust yourself off, and try again. Try another way to open that window into your son’s world. it’s there. Don’t lose sight of it. No one else will have the faith in him that you have. Allow yourself a day/hour of pity, I call them my “pity parties”. And then move on. Post one of the Before Dx pictures to motivate you. You’ll get him back…you will.

Is Everything OK at Home?

So Max is on spring break this week and Mommy and Daddy were faced with the usual conundrum faced by working parents: to get nothing work-related accomplished all week (except at night and during theoretical naptime) or pay someone to keep him safe, fed, and pretty happy?

We opted for the latter, especially because we need to continue earning the income necessary to pay for also this dern therapy, liquid vitamins and what-not.

Another reason – one that I am less proud of – is that I just don’t know what to do with Max all week!  Seriously.  The kid doesn’t play with toys.  He doesn’t talk all that much – except to ask for food items or announce that he has to go potty.  He’s 100% available for hugging and squeezing and tickling.  But he doesn’t want to participate in a whole lot of other typical mom-son-day-off-go-to-the-zoo activities.  I spend two full days with my children every weekend, fairly successfully filling those days with playdates, trips to the bakery and park, errand runs, etc.  But seven weekdays of trying to figure out how to entertain my high functioning but seemingly always bored son?!!

So we put Max back in his old day-care, where he was once King of the Hill, like his sister is these days.  It’s a home day-care, where my children are treated like members of their family and where I can easily walk in to find the owner and her husband lying own on the floor giggling with my children.  The only downside is that the owner doesn’t speak much English.  I’ve done my best to paint a very basic picture of my Max’s autism and dietary needs for her.  And her response is usually to tell me that he’ll be fine, that he’ll be talking up a storm (I’m filling in her English blanks here) by the time he’s five, and yada, Spanglish yada, yada.

But tonight, after his second day back in his old “school”, I think she finally got it.  She explained to me that Max didn’t want to do anything.  “No paint.  No ABCs.  Nothing”.  “Delilah is different. Delilah wants to paint.”  I opted not to go into his need for gross motor sensory input in order to gain enough of his attention to practice fine motor activities – how does one express this to a native English speaker who’s not fluent in ASD lingo, much less a Guatemalan woman without a high school degree?  I sputtered a truly non-eloquent “that’s because he’s AUTISTIC. NOT NORMAL.  His sister is NORMAL.”  Thanks for finally tuning into the channel that we watch every day!  (Yes, I know what my card-carrying ASD parent vocabulary should contain.  But try saying “neurotypical” with hand gestures and Spanglish. )

Meanwhile, Max was refusing to leave their apartment, and stuck to his preferred position of lying on the floor, under a blanket, clutching a bungee cord.  I had no patience for this game (which happens oh-so-often) and took my daughter to “leave”.  Don’t worry, this was understood by all parties to be that notorious parent game of “see you later”, disappearing long enough to get your child to follow you.  But Max didn’t follow, and needed to be carried out by the owner’s husband, and was launched into his carseat in a spacey, tuned out, non-verbal heap.  I was clearly frustrated by this version of Max – “He can do better than this.  Why does he perform so badly in front of others?!”

And that’s when the man said it; the dreaded words that one never wants to hear from a third-party observer: “Is everything okay at home?”

I felt like screaming to the man “No!  Everything is NOT OK at home at the moment. I can’t cure my son! I come home every night with a child who cannot tell me if he is hungry or not!  I want to be like every other parent on Capitol Hill, whose seemingly normal children do not need to wear pressure vests and be forced to make eye contact with Mommy before she will release the coveted lollipop from her mean clutches!

“Do I look like a bad mom?  Is he judging me or Max?  Is he asking me because they had this vision of younger, more Interactive and Playful Max and they have now had two full days of Older, Dazed, Sensory-Seeking, Autistic Max?  Did I ask Max a bit too forcefully to say “thank-you” and “bye-bye”?  Are they going to call…..The Authorities?”

Panic soon gave way to anger, as I pulled out of the parking lot.  “If they had ANY idea what we do for our son, the money and time we pour into speech and occupations therapy, the new child psychiatrist, the DAN! doctor, the enzymes, gluten-free food, liquid vitamins, books, webinars, sensory-rich toys…I love my son!”  How dare they accuse me of creating a poor home life for Max?  They should check out our living room, overflowing with a trampoline, swing, exercise ball, crash pad, and the various piles of treasured objects my son creates each morning. And on, and on, and on.

I’m still slightly worried that a social worker may come knocking on our door one of these days.  But mostly I know that I am doing my best to bring my son out of The Depths.  But perhaps I should carry some sort of bilingual explanation of this for Everyone Else.

My Son Rides the Short Bus

Credit for the title of this blog goes to my husband, who pondered whether he should start his own blog about our son.

Yup, my son is one of those kids.

Here he is.

Isn’t he a handsome boy?  Yup.  He is.  His good looks motivated me to truly polish my photography skills and make sure that I captured this kid as beautifully as he appears in real life.  He’s a little squinty here, but he’s looking into a sunny day.  He’s also a very smiley boy.  Fortunately.

Last fall: I am now a full-time photographer.  Self-employed.  Working harder than I have EVER worked in my entire life.  Things are going really well.  My daughter is adorable.  I love my husband. We’re throwing our first birthday party for our son.  Then, at about the same time my photography business starts really taking off, we learn that our son has autism.  The Big A.  Not as devastating as the “Big C”, but still not a position in which I expected to find my son or myself. There are so many of us out there – families, parents, and children, who attend a meeting one day to see if “you could pretty please find a spot in your pre-school for my son – who has a few speech delays, but NOTHING else is wrong with him – and what? You think he’s what? But he looks so normal.  So beautiful.  Surely you’re mistaken.”

It took the better part of a month this past fall for me to accept it.  And another month before I was ready to fully embrace the “lifestyle”, if you can call it that.

There are so many appointments.  So many forms to fill out.  So many doctors.  So many IEP meetings.  So many “can anybody recommend a doctor” conversations.  So many thoughts that I have to push out of my head sometimes in order to focus on my business.  We now cram all sorts of supplements into his non-milk milk, and try and find gluten-free foods that this kid will actually eat.  Have you tasted gluten free bread?  No matter what they tell you, it sucks.  Seriously. Not. The Same. Thing.

Yes, he does ride the short-bus.  It picks him up every morning to take him to a school on the other end of the District, where he is one of the star pupils in his own classroom.  But hey.  It’s one of those classrooms.  Not part of the “neurotypical” population.  Not one of the “Gen Ed” kids.  I guess am finally beginning to acquire the vocabulary of the “ASD” world (that’s Autism Spectrum Disorder to the non-members of this club).

And then we watch him and wonder if he’s just doing this particular thing because he’s three, or because he’s autistic.  It’s hard not to fill in all the lines with that particular color.

Of course I have unanswerable questions about my son’s future – whether he will go to college one day, find love, be happy.  More importantly, I wonder if I will ever really know my son.  Will I be able to sit down and have a real conversation with him ever?  “How do you feel?”  “How was your day?”  “What do you want from life?”  I am surprisingly successful at tidying up my mind each day and putting those ponderings away in a neat little box.

But sometimes those thoughts I push away during my morning ritual of black tea and Newsweek/People/Professional Photographer crawl back up to the front.  Today is one of those days. He had a difficult morning…which means that we all had a difficult morning.  I look at this image of him though and it just makes me want to reach out and hug him so tightly – and not hug him tightly to give him “sensory input” or make him feel loved, but because I just want to embrace the beautiful boy that I have.  Honestly, it’s nearly impossible to embrace that- the autism – on a daily basis.  But my son is in there too, sitting alongside the Big A.  He didn’t choose to be this thing (or to have this thing, depending on your philosophy about having/being autism/autistic).  And he doesn’t understand what it’s like to not be autistic.  He doesn’t understand how hard Mommy and Daddy are trying to pull him out of the abyss.  I wonder if he cares…

I’m a bit nervous about putting this out “there”.  My clients know about my son, as does most of Capitol Hill (it’s a small town over on this side of North Capitol Street).  But there are a lot of people that I haven’t told.  I guess this post is to just tear the band-aid off.  Get it over with.  I am a consummate professional – like I said, I work my butt off and focus on bringing out the best in my clients’ portraits.

But I have a personal life as well.  And today, I guess I’m feeling pretty personal.

M o r e   i n f o