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

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Being Honest Doesn’t Make Me a Terrible Person

So there’s a big kerfuffle/hullabaloo/blog-a-thon out there at the moment regarding Autism Speaks, its ongoing failures, and its recent call for action to fix/address/cure/prevent the autism crisis in American from spreading.

First, I must confess that I don’t pay much attention to Autism Speaks or any major autism groups, whether they’re run by autistic advocates, parents, or rich white people with autistic kids. I don’t have the bandwidth, as they say here in D.C. I focus on my life, advocacy for my son, my two jobs, my daughter, my husband, sleep, the occasional Fat Tire beer, etc. I am aware that Autism Speaks has some major debacles under its belt, including 1) a failure to include any autistic people in any significant capacity in its organization; 2) its much-discussed minute budget allocation for helping families and individuals pay for therapy  (their focus is apparently almost 100% on fundraising and on research for a “cure”); 3) their lack of action with regards to legal and social measures that encourage the complete integration of disabled people into schools, workplaces, and political institutions. Autism Speaks also created a promotional video that features a mom who, in the presence of her autistic daughter, discusses her urge to kill herself and her daughter after her daughter was diagnosed (pretty awful stuff to consider doing, admit in front of your daughter, and feature in a marketing video). In addition, Autism Speaks has been accused of painting a bleak, “pity-me” picture of autism that will encourage hostility and fear of autistic people, and possibly their murder. Please don’t fire back at me with corrections to my brief overview of Autism Speaks; like I said, I am only loosely aware of the organization, its crimes, its weaknesses, and its budget (although I have done some preliminary reading). 

Secondly, let me be clear that this post is not to criticize anyone else for their opinions about Autism Speaks, or their approach to living life with autism or with an autistic child (and please don’t get started on that “people first language” stuff. I don’t have time to sit through your political correctness lesson. I prefer “get to the point” language. Also? There are actually tons of autistic people who prefer the adjective to the three letter pleasantry–look it up). All of you are entitled to live your lives as you see fit. In addition, I think we can all agree that America provides us with some nice laws and social norms that support respectful discourse on topics that may be divisive in nature.

Now that all of that is out of the way, I can move onto my main point in this post: I am not a terrible person, a bigot, or a would-be murderer because I wish my son was not autistic. And I’m not calling for autistic people’s alienation, disenfranchisement, sterilization, murder, or any other terrible thing I could potentially be accused of by admitting publicly that I support measures and research to prevent the “spread” of autism from taking hold of another human being. 

Yes, I said “taking hold”.

I know that, for many parents and autistic people out there, they wouldn’t have their child any other way. Perhaps this is stated by parents who can look upon their autistic child (young and grown) and recount the numerous valuable life lessons their child and a life with autism has taught them. Perhaps their child is higher functioning (also, please don’t bother trying to explain to me why I’m not supposed to use the term “high” or “low” functioning–to me, these are incredibly useful, efficient terms). Maybe their child and family members have learned coping mechanisms that allow the autism to truly serve as only a small part of who their child is. Or perhaps this person believes in a god, and has come up with a satisfying rationalization for why life is the way it is, autism, skin color, sexual orientation, body mass, hair color and all.

On the other hand, I feel like this “not having one’s child any other way” thing has almost become this trite pledge of loyalty (and possibly a mantra that is hopefully repeated until the speaker truly embraces that opinion), a story many parents tell themselves, even though they secretly wish that their child was not autistic. 

Well guess what? I do wish my son was not autistic. Why? Because our life (his, my daughter’s, my husband’s, and mine) would be SO MUCH easier without it. And I resent the implication that, by being honest and speaking my truth, I will face criticism, possible bullying, and outright hatred by parents, advocates, autistics, and so on, suggesting that I want my son dead, or some equally terrible thing. While I acknowledge that there is a serious possibility that the “fear mongering” spread by organizations like Autism Speaks will result in the alienation (at the very least) of autistic people, I am not an organization, a public figure, or anyone of significant consequence on this planet. I’m just me. A mom who nearly has more than she can handle during her brief life on earth, thanks to this charming thing called “autism”. I am entitled–legally and otherwise–to speak my mind, particularly when it is my freedom to describe my life with my own words that allows me some space in an otherwise bolted-down, limited life.

Also, wishing that my child was different is not equal to wanting him removed from my life. There are plenty of loving and loyal parents out there who have wished that their child was/had more or less of something, because that something makes life hard, whether that “thing” is defiance, ADHD, shyness, empathy, selfishness, allergies, etc. (I’m sure that someone will jump in here and dissect that statement to illustrate that autism is different from all of those things I just named (please see previous statements about people first language and political correctness).) Newsflash: it’s possible to love my son wholeheartedly and simultaneously wish that he wasn’t autistic.

My 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 will skip going into the details, for fear of people labeling this post some sort of request for pity–because it is not. Suffice it to say, we do not live with a teensy bit of autism in an otherwise broad and multifaceted life. Autism–now, and for the foreseeable future–is pretty much everything in our life.

In addition to my son, I also love my daughter. We do our best to create a second life for her that is less affected by autism so that she does not live with the level of stress and emotional pain that bubbles up to the surface of her parents’ life a couple times a week. She does not yet understand that autism governs her parents’ finances, autism requires that her house be locked down like a prison, and autism is the reason she can only have friends come over when her brother is being taken care of/working with a therapist upstairs or outside of the house.

My son is relatively happy (as far as I can tell, because I can’t communicate with him much). However, his life is limited, just like ours. He spends the majority of his time receiving ABA therapy–both in and out of school-during the day, the evenings, and on the weekends. He can’t go to public events, restaurants, birthday parties, or playdates. His lack of self-control on many days, his obsession with food and banging on objects, glass, and walls, and the inability for us to monitor him and simultaneously pay attention to the rest of the world while we are out with him means that we need to keep him in a controlled space. Perhaps he would not label his life as one of suffering, but it’s quite possible that, if he knew how much more freedom he could have–were he not so significantly disabled–he might also vote for a non-autistic life.

And no, my life is not only filled with suffering. My husband and I also find time to occasionally get out for a movie or the exceptional night away, thanks to a therapist or family member who can stay home with the kids. We have jobs. We smile. We have happy moments. We enjoy life, to a certain extent.

But the buzzing fluorescent light of autism is ever-present in the background of our lives. And that sucks.

I’ll say it again: that sucks.

And there is absolutely nothing wrong with wishing that my son’s life (his days filled with being told “no”…his body gripped tightly by another human during every moment spent outside our home in order to keep him safe or from doing something he should not…his inability to make his wishes, opinions, and feelings known to everyone around him), as well as our life, was not governed by autism. Because guess what?

Life without suffering is better than life with suffering.

Taken on its own, that statement–unless your religion tells you otherwise–is pretty much universally true and acceptable to state in public. And autism makes all of us in our family–my son included–suffer, to different degrees.

This post is a long one, and for that and only that, I apologize. But I am writing this to publicly acknowledge, without any shame, that I wish I could cure my son of his autism–but I know I cannot.  Also, I want to prevent other families from having to live as we do. My son’s version of autism is an extreme one. And I have a hard time agreeing with people–whose children can speak, go out in public, make choices, control their bodies, and otherwise function at a much higher level than my son–who tell me that I should celebrate autism…that I should appreciate all that it has taught me…that autism is only one part of who my son is.

Please. Don’t. Bother.

I’m not buying it. If that’s your truth, and you really believe it, good for you.

But it’s not my truth. And it most certainly isn’t my life. I challenge you to live my life (one that is lived without the opiate of religion) and convincingly argue that autism is a blessing. Autism Speaks may fail in a lot of ways. But their description of a life lived with autism is completely accurate, with regards to my own life.

Bring on the torches and pitchforks. I’ve gotta go make some birthday cupcakes for my son now.

jillsmo - November 15, 2013 - 6:42 pm

*highfive*

Speak your peace, sister. I got your back.

Julie Sparks - November 16, 2013 - 8:24 am

I love it, Jill. I’m sure you will get some nasty feedback, but you covered all MY favorite points. You love your son. You do not like his suffering. Autism Speaks has its issues, but a “cure” is not a crime. Your blog is your place to say your piece.

I hate the division that exists in the autism community over this and so many freaking trivial points. In accepting that we are all different can’t we accept our differences? Ah, another blog post ….

Happy Birthday to your son!

Laura - November 16, 2013 - 10:22 pm

Your Newsflash says it all for me. I adore my son and love him to the ends of the earth but if given the chance, heck, yeah, I’d take autism out of the equation. Why? To make his life easier. I hate to see him struggle on so many levels. I want him to have friends and participate in activities and understand social cues. Keep up the good fight. We’re all in this together.

Carlee - November 16, 2013 - 11:29 pm

You’re certainly entitled to hate autism and wish your kid wasn’t autistic. But there’s a risk that your son understands so much more than he “seems” to and there’s really no downside to “presuming competence” on his part.

Given the boy and the autism are one and the same (if for no reason other than there’s no way to separate the kid from the autism), you run the risk of your precious kid interpreting “I wish my kid wasn’t autistic” as “my mom doesn’t want or love me; what my mom really wants is a completely different kid. A non-autistic one”. And my heart breaks for the kid who feels mommy would 100% rather have a different child.

(There’s a great non-fiction book by Andrew Solomon called “Far From the Tree”, about parents raising kids that are unlike them. Kids with autism, dwarfism, Down syndrome, musical prodigies, etc. interestingly, the parents with kids with “stigmatized” differences — ie all kids in the book except musical prodigies, the Joshua Bells and Jay Greenbergs — very, very quickly see the silver lining to their disabled kid, while the parents/siblings of the prodigies have a much, much rougher road).

Lisa @ AutismWonderland - November 18, 2013 - 10:35 am

No judgement here. It’s hard. And as much as I love my son, just as he is…I’d be lying if I said there weren’t times when I wish things were different.

Shawn Weston - November 19, 2013 - 7:35 pm

Love your post. I tried to express the same feelings to my friends on FaceBook and felt like I was the only one who felt that way. Someone I was friends with actually said if Autism Speaks statement described my feelings then I should get therapy and learn to accept and love my son as he is. The things people say! Thanks for putting this out there!!!!

Maya Wechsler - November 19, 2013 - 7:48 pm

Shawn, you should kindly point them to this post and advise them to keep their opinions to themselves. 🙂

Jeannie - November 25, 2013 - 12:08 am

The only thing I really want to disagree with is the decision to keep him confined mostly to home. My daughter is “low functioning” autistic and I will not limit her world because other people may be irritated by her screaming, humming, beating, kicking, etc. if I take her to eat with the family in public. If it is a problem that a child with a disability may or may not cause a scene, it is the problem of the person observing, not mine. If my daughter throws a toy in Walmart while in the midst of a fit from being overstimulated, I do not care what some stranger watching thinks. I will not imprison her in our home because her behavior may bother a stranger who does not know what we have been through together. And the more I have exposed her to new experiences and new places, the better she is learning to cope with these experiences and the less intense the fits from over stimulation have become. My expectations for her may be higher than what she will ever reach, but when I stop expecting her to progress, she will. And I will be the last person to ever give up on her!

Nancy Leger - November 25, 2013 - 2:21 pm

I’ve just read my very own thoughts. 🙂

Anne - November 26, 2013 - 1:57 pm

A friend of mine just sent me to read this today and I’m glad I did. As I brace myself for an annual mandatory celebration (all celebrations are a test for me), she knew I would take comfort in someone seeing that not being autistic would be a better life.

I remember my friends from the Easter Seals camps – there were no disabilities that didn’t involve some suffering from time to time. A parent may certainly thank God that their child is alive, but you can’t deny that our lives include suffering. Our suffering becomes part of our existence as human beings – an undeniable piece of ourselves. Noone would wish this life for their child – I wish more parents would say that. Some of the garbage that my mother was told – that I was her cross to bear, that I was an inspiration, that there was a special place in Heaven for me – was just so unhelpful and didn’t feel truthful.

I’m now high functioning as an adult and was never as severe as your son, but I would much rather have been born without autism. I accept that my disability is part of who I am, it’s just that – acceptance of a condition that I have to manage every day, much in the way that someone with Type I diabetes has to carefully manage their condition. I have more decent days than bad ones. Sometimes I have a really good day. I have to remain vigilant. I have to be careful about doing everyday tasks like brushing my teeth in just the right way (a terrible combination of both motor skills and tactile issues). I have to be careful to make all my doctor appointments so that I remain a compliant patient who can live independently. I have to fight to look normal – not making a cry or rocking when someone puts a slice of turkey on my plate – because it makes other people nervous, which then makes me upset and nervous, and creates a horrid spiral downward.

I’m thankful that I’m in amazingly good shape by comparison to some of my peers. My mother fought to get me here – fought institutionalization in the ’70’s, tried radical therapies, became an expert, and never quit. I fought to get here. But it was just that – a fight, a struggle. At times she suffered while I was blissfully ignorant of her struggle on my behalf. Other times, I suffered as we tried some new therapy or a new teacher. Then there were the days we both suffered as I had a meltdown and banged my head over the available underwear selection now that I was in women’s sizes.

Honestly, I don’t think my mother or any mother wants their child to suffer. It’s OK to hate that your son suffers and to wish that it wasn’t so, for him or for other children. I wish that more people were willing to be honest about the complexity of emotions involved in parenting a child with a disability. It’s exhausting work and every good day is hard earned. You are clearly a fierce advocate for him and for your daughter and they are lucky to have you. I wish you all more good days.

To My Daughter

Dear Baby D,

Before I knew who you would become, I somehow selected the perfect middle name for you: Grace*. You are filled with it, even though you do not yet know this.

Last week one night, while your brother raged, attempted to bite your Mommy and Daddy’s faces, pull our hair, and throw everything off the dinner table…as he slipped back and forth between inexplicable anger and heartbreaking wailing, you raced your Minnie Mouse car up and down the length of our row house, making adorable engine noises and scooting effortlessly around the other careening humans in the house. I can’t say if you were oblivious, making a conscious effort to ignore the chaos, or whether you don’t even hear it anymore. But you handled the situation beautifully. You didn’t complain. You didn’t ask for more information from us during a moment when we could not possibly have provided it. You just acted like a three year old who was playing with her toys.

And last night, when your brother started running up and down the length of the house, sweaty and screechy, teetering on the edge of another meltdown while I cooked his own dinner as well as our separate one…when you asked for the fifth time for help changing into a different dress for dinner (because you hate your school uniform–which I totally understand!), and I–as usual–told you that I couldn’t help you out right now because your brother was freaking out and I couldn’t leave a hot dinner unattended on the stove, which I needed to cook because Daddy had to run out and work again at 8pm at night…You didn’t whine. Your voice might have cracked once. And if you had actually descended into tears, it would have been completely appropriate for the level of stress that was building–once again–in our house. I ran to you and quickly gave you a hug and told you how much I loved you. And you pulled yourself together and waited for Daddy to mix up your brother’s “sleep milk” so that the rest of us could begin to settle down enough to eat.

And then, while we attempted to eat, and Mommy and Daddy had to get up to investigate the sound of broken glass (which turned out to be a frame of photos I shot when your brother was a baby and life was simpler), you ate dinner alone, yet again, while we swept up the glass and kept your brother from walking in it. This was not the first meal that you ate alone, while Mommy and Daddy got up to clean up one of your brother’s perfectly timed mid-meal accidents (whether they were potty or household object -related). When these things happen, you continue to chew your food, not ask too many questions (although you do ask a few, such as–“was that a picture of me that Max broke?”), and wait around dutifully for us to return to the kitchen in time to give you dessert. I know that eating dinner alone is…well, lonely.

I appreciate that you are beginning to experiment with the use of phrases that you may not fully understand, because you hear them being thrown around so often. The other night you asked me if your brother “had taken his meds yet”. This made me a little sad, because three year olds should not know the short-hand for the word “medication”, nor should they know how to use it so casually in a sentence. At the same time, it’s also good to see that you continue to roll with the punches. This is the only life you’ve known, and you are not aware yet that other families’ weeknights are usually simpler and filled with a lot less franticness.

It did make me cringe a bit when I had to take your brother with me one day to pick you up from after-care, and you immediately informed one of your teachers that your brother is “autistic”. I don’t think that you really know what that word means, but you do know that it is something that Mama and Daddy often tell people we meet when we are outside of the house, in order to explain, forewarn, or excuse ourselves from tricky situations. You know that this word is important, that it explains a lot of things, including the reason you often have to wait for a while sometimes before you can get an adult to help you do something, because your brother’s needs require immediate attention. You know that this is the reason your brother can’t speak yet. You might share the word a little more quickly and freely than we might, but I consider this to be a necessary part of your growing awareness. I believe that it is important for you to at least have the correct word to use, even if you don’t fully understand how this word will affect you for the rest of your life.

The other night at dinner, I jokingly told you that you can be whatever you want to be, as long as you earn a steady salary so that you can maintain a stable home, and that you do not pick up any addictions or leave a string of divorces behind you. I also asked that you love your brother unconditionally and grow up to be a patient and responsible adult. You smiled and said “yes, Mama”. You really had no idea what I was talking about. I was joking, but I kind of meant all of it. I will never discourage you from exploring any career (last night, you told me that you wanted to be a “cooker”). But I do secretly hope that you will choose something that allows you to have a home and a schedule appropriate and flexible enough to respond to your brother’s needs, when we’re not around.

I love you very much. I am sorry that your childhood will not be simple or easy. I know that it will make you a more resilient, empathetic person (and at the very least, you will have ample fodder for your college application essays). But I wish that it looked a little more like your peers’ lives. I have never yearned to be normal. I never wanted children who dreamed of being cheerleaders who dated the football team captain and teased the band geeks and “goths”. I wanted my children to have some spice and a total allegiance to the importance of independent thought. But I also have to admit that I wish I could give you a small taste of that “All American” childhood, now that yours is so unexpectedly far removed from white picket fences, chili cookoffs, cruise ship vacations and uneventful family dinners.

I promise to do my best to spoil you just enough–when our crazy life allows–so that you feel remembered and cherished. I will continue to give you a “hug and kiss and squeeze” twice at night and once in the morning. When I can’t drive you to school–which is most of the time–I will remind myself to read you that third book you’re always begging for, and have a tea party with you a few times a month. Your day is very important, and I want to hear about it. And your ideas and questions are always worth listening to, even though I might be flustered or exhausted when you first voice them. I thank-you for your patience and your grace while our house burns down around you, night after night. And I hope that you will continue to travel down the path you are currently on. You are loved. You are not forgotten. You are an important and equal member of our family.

Love,

Mom

*Grace would have been your first name, but I felt like this blue blood name would clash with your unmistakably Jewish last name (which you should also be proud of, because it belongs to your mother, who ignored everyone’s wishes that she would just conform to the outdated, patriarchal norm and pass you off under your father’s name in order to make everyone’s lives easier). Plus, I think your first name is pretty awesome and equally appropriate for you.

P.S. Here’s a collage of you and your personality, which is remarkably easy to record. There is only one of you.

Maca - October 2, 2013 - 1:44 pm

This post makes it easy to fall in love with your daughter, even though I’ve never met her. Stay you, D.

Andrea - October 2, 2013 - 2:05 pm

What beautiful piece! Lovely Tribute to your daughter 🙂

Jo - October 2, 2013 - 6:47 pm

What a wonderful tribute to a little girl who’s filled with more grace than most adults.

And the photos. Be still my heart.

Why I Will Never Join the PTA

This is why you will rarely see a special needs parent step up to manage a school auction. And yes, I actually sat down this morning, after opening up my inbox to discover my second piece of bad news for the day (more legal details to come) and shared all of these details with a bored bureaucrat who will most likely stamp my appeal “REJECTED” from some throne in the sky. I guess this is the Jerry Springer-ization of my life for some stranger.

Dear Benefits Claim and Appeal Manager,

I have just learned this morning that the Dependent Care FSA (DCFSA) requires annual re-enrollment. I had no idea that this was the case; I understood that I did not have to make any changes to my medical plan, if I intended to maintain a particular deductible level from year to year. I also understood that Applied Behavior Analysis (ABA) would be covered with pre-authorization, during the upcoming 2013/14 plan year. I’m noting this point in particular to demonstrate that I felt that I had indeed read through the necessary material pertaining to any changes from year to year, since I have an autistic son, and the details of my medical insurance are obviously quite important to me and to the financial well-being of our family.

However, I did not see any details about the necessity of re-enrolling for the DCFSA. I’m sure that there was some mention of this somewhere along the way; but I honestly did not see this, or I most certainly would have re-enrolled. You see, I pay attention to a lot of details[1]. I do all of this to avoid bankruptcy, as the therapies for my son cost approximately $4,500/month.

So somewhere along the way, I assumed that I did not have to “re-up” my monthly DCFSA set-aside, which I use for a tiny amount of tax relief for costs associated with sending my daughter to day-care, and soon “extended day” services for DC’s free pre-school programs (which I need in order to continue working for AcmeCorp and earning insurance benefits for my entire family).

In other words, I am pleading with you to allow me to enroll in AcmeCorp’s DCFSA benefit program, even though it is now August 14th, 2013. While there is no particular “new” life event to help rationalize this request, every day brings more bills, paperwork, and legal issues related to my autistic son[2]. These are daily “life events” that most certainly present an understandable distraction from some of the smaller details – such as the need to re-enroll in the DCFSA benefit each year – that managed to elude me during the daily deluge of autism-related details.

I hope that you see this long letter as an honest explanation of events from an exhausted and well-meaning mother. And I hope that you can understand how and why I failed to note the re-enrollment rules for DCFSA.

Sincerely,

Maya



[1] I have to file a claim for all of my son’s providers with whoever my health insurance provider happens to be. I then wait for the EOB to return from the insurance provider, scan that, and send it back to the service provider, who then sends the EOB onto Medicaid, who provides secondary coverage for all of the many treatments/therapies that Blue Cross Blue Shield and United Health Care do not cover. I have to manage all of the payments from health insurance providers, pass these on to service providers, follow-up with the insurer to investigate why a particular CPT code or date of service was rejected during any particular month, and maintain communication with the service provider, the insurer, and Medicaid.

[2] We are currently in the middle of a major legal battle with the DC Public School System, which allowed my son to lose all of his language and potty training skills during the past school year, among other crimes over the years (i.e. not noticing for 30+ minutes that he had left school property and wandered off to a field next to a six lane road), allowing him to eat garbage, and putting him in a classroom with a teacher who was not licensed nor certified to teach special education in the District of Columbia).

Mary O - August 20, 2013 - 1:35 pm

Hi Maya,

We are special needs parents on a similar journey.
I’m so impressed with your strength & persistence.
Could I ask a question? What software do you use to track your
insurance, claims, EOBs, and Medicaid filings?
I’m deep in the dirt over that!

Kaylee - August 29, 2013 - 1:39 pm

Wouldn’t it have been easier to simply stay on top the paperwork, submit the renewal materials as required and NOT have to grovel to get it reinstated?

Jessica - August 29, 2013 - 1:57 pm

Kaylee: of course that would have been simpler. But we all make mistakes. And with special needs kids we’re overwhelmed and tend to make them more often than the average bear.

Jennie B - August 29, 2013 - 2:46 pm

Kaylee, have you never forgotten anything, misplaced something, missed a deadline? Never? Well, life happens, and life with a special needs child, is incredibly hectic. Of course, it would have been easier to just re-enroll. But it wasn’t on purpose and in these cases, a little compassion goes a long way.

Jo Ashline - August 29, 2013 - 4:50 pm

Kaylee: Wouldn’t it be easier if cancer could be cured with Advil? Wouldn’t it be easier if pedophiles didn’t exist? Wouldn’t it be easier if people commenting on blog posts written by honest, tired, frustrated parents who needed to be lifted up weren’t commented on by sanctimonious asshats?

Lay off lady.

jillsmo - August 29, 2013 - 7:04 pm

Wouldn’t it be easier to be rich and not have to worry about money? I find it very irresponsible that you weren’t born into wealth, Maya. My disappointment knows no bounds.

Whacamole Mom - September 1, 2013 - 1:15 pm

I miss deadlines daily, so I feel your pain. The piles of paperwork truly haunt me! It sucks when it bites you like this.

To Mary, you and whomever else is overwhelmed with tracking everything…I just discovered this app that I’m kinda in love with: Simplee. (I get nothing out of sharing this info with you but the joy of perhaps saving you a few seconds of time here and there.)

Also, I’ve had my own nightmares with insurance. Here’s one laughable absurdity: http://www.whac-a-mole-life.com/2012/02/letter-from-my-insurance-provider.html

Or what Jillsmo said. Let’s just all do that.

Kaylee - September 21, 2013 - 2:45 pm

Of course I make mistakes all the time – everybody does!

However, insurance companies provide exquisitely detailed instructions on his to seek/maintain coverage. Government programs also provide exquisitely detailed instructions to seek/maintain coverage — and helpfully post their policies and procedures online.

Clearly, doing the (incredibly annoying, time-consuming, endless) late work to maintain the services your son needs is low on your personal priorities list. The sad thing is, your son will likely suffer because you’ve apparently got better things to do than deal with all that paperwork!

Maya - September 23, 2013 - 4:20 pm

Your comment seems to ignore the very real fact that I have to pay attention to an enormous pile of paperwork, therapy and doctor’ appointments, insurance forms, insurance policies, IEP documents, legal documents, legal dates, and oh yeah….all of the therapists that come through my house each week.

Either you are not a special needs parent, or you have managed to magically fly above the day-to-day grind of details required to parent and fight for a special needs child and manage to keep a close eye on all of it. If you have achieved the latter, then I beg you to share with me your miracle methodology. I will then share your methodology with the world, which will instantaneously make you a hero and possibly quite a rich person, thanks to the applause and worship by special needs parents across the world.

In fact, perhaps you should write a book. I will be the first person to buy it from you, provided that it is perfectly edited, footnoted, and illustrated.

Also, if you are going to do a drive-by insult to special needs parents, based on the assumption that you could handle it better than us (it’s amazing how easy it is to make armchair comments without actually jumping into the ring and giving someone else’s life a shot), at least don’t be a fucking pussy. Paste your actual email address and phone number. It’s incredibly easy to insult a total stranger–who is brave enough to own up to her own flaws, while painting an accurate picture of the incredibly complex context in which she and her son exist–via the medium of the “anonymous” Internet. However, you end up looking like a coward (reminds me of that poor mother and grandmother up in Canada, who received an anonymous hate letter from another ignorant, spineless neighbor). I would be more than eager to humor your “heartfelt”, “helpful”, “well-meaning” suggestions if you had the uterus to offer these up in a face-to-face conversation. It’s just pretty damned hard to take you seriously when you say something in the internet school yard and then run away cackling. BE BRAVE. TELL ME WHAT A TERRIBLE PARENT I AM TO MY FACE. Oh, and please make sure to tell my children how much they suffer because of my parenting.

Karma’s a bitch, bitch.

Greg - September 23, 2013 - 6:01 pm

Dear Sallie or Kaylee,
Ironically, after contributing the name of this blog, I haven’t really contributed much. My wife is such a great writer and I think it is very cathartic for her. So, I am generally happy to read, but not write. Your comments really enraged me though. I felt compelled to respond, not because Maya needs anyone to defend her. She is more than capable of doing that. But because I know she’d never tell you how truly grueling her day to day life is and how heroically she faces it.

I’m guessing a country name like Sallie/Kaylee is your “Christian” name and further guessing you’d probably identify yourself as one, much to the chagrin of any real Christians. I myself am not certain whether God exists, but I am certain that if he exists, Christ himself would revile your commentary. Apparently you missed the part of the Bible that warns, “Let he who is without sin cast the first stone”.

Even if you aren’t calling yourself a “Christian”, being judgmental is not the best quality an individual can have to begin with (particularly for a “Christian”). Even more disturbing is that you’ve managed to raise what is normally merely an annoying, albeit nearly ubiquitous, quality to a sinister little art form. Your inaccuracy is matched only by your ignorance. Your ruthlessness is matched only by your vanity.

You proclaim that basically, if you were in charge of our son’s life, all would indeed be well and yet you know exactly NOTHING about it. Do you even know how many insurance companies we’ve run through in the last few years either because we’ve been dropped or had to switch jobs because of our sons needs? Do you have any idea how many therapists and doctors my son requires…no you don’t. If you did you would realize that keeping up with his insurance paperwork and all of the litigation related obligations to try to get our son a decent education, instead of being allowed to wander off alone in the city (like he was 3 times in public school) or allowed to eat garbage (like he was on multiple occasions), actually IS a full time job.

Then you can add to that full time job her actual full time job, a demanding job as a manager for one of the most prestigious consulting organizations in the world. However, whenever that work load is less than 50+ hours a week she always adds some photography to it to help make ends meet. She also tries to run a support group for parents of autistic children in our area. Oh that’s right, I should mention that we are also trying to help train the DC Metropolitan Police Dept to better understand autistic people. We are hoping that after doing so we can worry less about our son getting shot when he gets a bit older and accidentally steals something from a store (because he has no concept that you need to pay for things) and then ignores police officers when he’s told to get his hands out of his pockets and they think he’s armed.

My sense of decorum prohibits me from telling you what I really think of you. A smug little bitch like you would have no concept of the never ending sacrifices my wife makes on a daily basis for our son and our family. Compared to a ruthless and nasty person like you, my wife is a living saint.

She works at the equivalent of 3 jobs well into the wee hours of the morning and does so nearly EVERY night! I only work the equivalent of 2 jobs and I can’t tell you how interminably exhausting it is to wake up two or three times every night to either the sobs or outright blood curdling screaming of your inconsolable child. And just maybe, if you are lucky, you can string together 4 hours of sleep each night. But you never really sleep. You’ll always have an ear to that common wall of our bedrooms. Always listening to make sure our son doesn’t escape from our Fort Knox like house (where nearly every door, drawer or cabinet is physically locked down with metal locks) and wander off into traffic or jump into a pool without knowing how to swim.

You can comment on my wife’s failure to file paperwork promptly the next time your hands are red and cracking from the countless times you’ve washed your 6 year old son’s fecal matter off of everything he owns, everything you own, everything in your entire home and from your own hair and body. Maybe when your hands ache from scrubbing things clean you won’t feel so superior. You can expound on the error of her ways in her paperwork handling when your child kicks and screams so violently and bites you so hard that he draws blood and yet he cannot even tell you what is bothering him. When you drive your child 100 miles a day just to get him into a decent school and you take your child to 2 occupational therapy appointments, 2 speech therapy appointments, 4 or more Applied Behavior Analysis appointments and at least one other doctor’s appointment (take your pick from his shrink, his pediatrician, his geneticist, his dietician, his allergist or whatever doctor du jour is necessary) EVERY SINGLE WEEK then you may have a right to criticize and even then…would you? I think not.

No, I think you’re an armchair tourist of other people’s misery..trying to tell us all to “boot strap” it and how it really isn’t a big deal. I am imagining you smugly telling us, “Just Do it”, or some equally obnoxious and meaningless motivational jargon.

Our life is not a Nike ad you asshole. So, why don’t you just shut the fuck up!

Proud to be Maya’s Husband,

Greg

P.S….sorry about that decorum 🙂

Dani G - September 24, 2013 - 11:40 am

Hard to tell who has less compassion here: Kaylee the commenter or the insurance business.

We parents raising children with special needs are constantly, constantly at battle. It’s enough to fight the schools for fair services, the system, the medical establishments, and society’s cruel judgement, but to throw in those who cast stones behind the laptop keys seems plain old cruel.

His Mouth

On some nights, as my daughter watches her pre-bed TV downstairs in our living room with my husband, I opt for putting my son to sleep in our bed, rather than lying with him in the darkness of his. I dim the sconce lights low on either side of our bed, and get some work done on my laptop, or catch up on some quiet TV, while my son wiggles around and slowly falls asleep. It doesn’t really make much difference to him where he sleeps, so long as he is lying close to one of his parents.

Two nights ago, I leaned over my sleeping son, appraising his face in the blue TV light. And that’s when I saw his lips.

He has such beautiful features. His eyes are composed of this absolutely amazing set of colored circles, like some sort of pearl inlay in a round table. When he is outside and that natural light fills his eyes (said the photographer), you will notice what I’m talking about — his eyes are impressively colorful and make you appreciate his increased eye contact that much more.

But the feature my eyes settled on the other night was his lips. They were pursed just so, in a way that reminded me of how he looked as a baby. Oh, how I wanted to kiss those lips. I wanted him to be a baby again, passing out on my chest after my short-lived breastfeeding days, when I had nothing but typical parent hopes and plans on my exhausted mind. It was only the fact that I was so damned that kept me from running down to my basement and grab my camera to run up and grab a few images of his baby mouth.

Please pay no attention to the ghostly editing. I was still an amateur when I edited this second image, and thought that desaturation was the mark of a “real” Photoshop genius.

They were children’s lips, and not those of an adult. Not yet, at least.

But the rest of his body continues to change, as the body of a child is supposed to change. I’ve noticed that muscle lines are starting to appear on his arms, a hint of the larger bicep and tricep muscles to come. And sometimes, when I do decide to lay with him in his own room, in the faint light that wraps around the light blocking curtains we installed in order to squeeze out another hour of sleep from him each night…I believe that I can see his face as it will look when he is a man, in that way that staring in the mirror for long enough starts to make the features of your own face distort into something that is different than what is actually in front of you. Squinching my eyes at him in the darkness, my son’s face is no longer sweet and pudgy; it is the face of an adult who needs to shave.

And all of these subtle evolutions of his body scare the hell out of me.

For one thing, will I find myself lying in bed and cuddling with a 30 year old man, who still needs his mommy to drift off into sleep? To say that this image is inappropriate is putting it lightly.

And what about those moments of frustration, when my son is tired and can’t communicate or get his way, and he pinches my skin and bites his cloth “chewy” around his neck? How will that frustration show itself — when those biceps are fully developed — in more painful, injurious ways? I’ve got to be honest: there will come a day when my son is stronger than me, and most likely when I can’t outmaneuver him.

Then there are the more intellectual and emotional considerations: how will I feel when I see my son acting out in a way that doesn’t match up with other men of his age, when there is no more “writing off” by society of his behaviors as “just another kid”? And how will I go about accepting the “stims” (the random giggling, the high pitches screams that must tickle the right spot in his brain), or the random hugs that feel so nice now but would be socially out of place in the grocery store, when he is 20 and I am 50)? Can my son eventually be trained to act “appropriately” in public, and become socialized in the way other children absorb relatively effortlessly by the time they are 5-6 years old?

I just don’t know. And the not knowing and the constant wondering is like living in purgatory the end of which may never come, since they say that the human brain is capable of changing in ways that cannot be predicted, and over the course of one autistic person’s lifetime.

We have witnessed a few small improvements in my son, since we gave up on waiting for DC Public School’s to exercise every possible legal angle in order to avoid placing him in a private school. Now, we see signs of the boy “in there”. We see him do things that wouldn’t make a parent of a non-autistic child stop dead in their tracks:

  • He opens up a Where’s Waldo book to gaze at the drawings for a few minutes. He hasn’t opened a book to look inside…ever.
  • He walks to the bathroom sink, picks up a cup nearby, turns on the faucet, fills the cup with water, turns off the faucet, drinks from the cup, and puts the cup back. He does this as naturally as any adult would.
  • His swing slows because he does not yet know how to pump. He sees me walk into the room and asks me to “push”. He selected the right verb, without prompting, and it was a verb that we don’t use very often. So that word was in there…in his brain…somewhere.
  • He sometimes cries now with such anguish, howling with emotion and yet unable to verbalize what pains him — whether its physical or emotional in nature, we cannot say. Is this a sign that he is coming to terms with his inability to verbalize the intellect that is developing within him — and therefore an important developmental milestone that we should tentatively celebrate as a sign of more complex things to come? Or is this the furthest extent to which he will ever be able to express his frustration, and therefore one more manifestation of the permanent wall that sits between his brain and the world around him?

I am well aware that there is no cure for autism, and no point past which my son is likely to go when he will be one of those rare people who “lose” their diagnosis. His stims and OCD continue to evolve and will always require explanation and draw stares from people — a fact that is sure to become more immutable as he eventually loses that “children do the darndest things” dismissive explanation from passers-by. And I really don’t know if or when the positive changes that we are seeing in him, since placing him in a specialized school, will slow down to a point where I say “OK. Who he is now, and what he is capable of now, is where he will likely remain for the rest of his life”.

Not being able to see the end of his developmental arc right now is a place that allows me to be hopeful. But it is also a place filled with some fear. I can’t quite get a hold on where I am supposed to stand in relation to him — if that makes sense. I don’t know whether I should quietly absorb the surprising developments we witness in him, not celebrating them too loudly, in order to avoid “jinxing it”. Or if I should prepare myself for a lifetime filled with little victories that will still ultimately leave me as a parent to a son who will never be able to live independently or communicate his needs completely.

So back to the thing that launched this long-winded post in the first place: his lips.

Who will my son be when those lips that I gaze at now with such maternal nostalgia are surrounded by facial hair, creases, and even wrinkles? I hope I will one day hear a sentence leave those lips, filled with distinct words and clear intent. But that image in my mind still quite blurry right now, as I wrap my arms around a boy who needs his mother — in many ways — nearly as much as he did when he was a baby.

From the Autism SOP: Getting an EEG

I love my little boy.

So much.

He was UNBELIEVABLY tolerant and patient when he spent 24 hours at the hospital while enduring an overnight EEG test. This poor kid had to walk around with his head wrapped up like a mummy and weighted down by a box of EEG “shtuff”, while his entire body was tethered to a very complicated looking machine that monitored his brain activity and trained a camera on him. My poor boy (and I) were trapped in a hospital room overnight, while this machine mapped his brain waves and I prayed that he didn’t completely lose it.

And he was an angel.

He only tried to leave the room a few times and he did so in this way that was like “hey Mommy. Why don’t we go for a walk? Wouldn’t that be nice?”, rather than in a “I’mma bust out of this joint as fast as I can and yank that damned machine behind me, if that’s what it takes” kind of way. Seriously.

Some parents swell with pride when little Johnny hits a baseball for the first time with his bat, or reads his first book at age five.

I tear up and applaud when my little boy sits on a hospital bed, hooked up like a machine, to a machine, and he looks at me and says “up?” to basically ask permission to stand up and walk around the room.

Autism, autism and epilepsy, autism EEG, epilepsy EEG, EEG, autism hospital, autism tests

Taking your kid in for some sort of EEG and/or sleep study is pretty standard operating procedure for autism families. The numbers vary across studies, but somewhere between 20 and 30% of autistic kids suffer from epilepsy. I am guessing that they won’t find much in the way of seizures happening in my son’ brain, but perhaps they’ll notice some “abnormal brain activity”. Either way, we’re checking the box and getting a baseline of his brain activity.

I had dreaded this day, because my son doesn’t really “play” with toys, nor does he watch TV. I had fully expected to inform the hospital staff, a few hours in, that this whole test was pointless, since we could not control our son and they could therefore not get the data that they needed. I brought a suitcase full of every toy in our house that made noise, and I bought two giant bags of candy and plenty of Cheez-its that I figured I would need in order to buy a least an extra hour or two.

But in the end, I only cracked open the candy at 9pm at night, when I was trying to get him to drink his medicated milk so that he would fall asleep and I could get a few hours of sleep myself on that crappy hospital sofa bed. In the end, my son won the award for one of only two kids on the floor who kept their sensors on their head all night long. WHOO-HOO! I’LL TAKE A VICTORY WHEREVER I CAN GET IT.

The only part of the day where things got a bit dicey was after he woke up from being anesthetized (they knocked him out so that he would not be aware of all of the electronics being glued onto his body). He was pretty pissed off when he woke up, groggy, with a bunch of strange adults staring at him. We had to restrain him briefly, and the hospital staff (bless their hearts) wheeled in a nifty “soothing machine” into the recovery room.  It had mirrors and little ropes that changed colors, and it projected underwater images on the ceiling, while playing music and making “water sounds”. They also gave us these handy blue splints that prevented him from being able to bend his arms and mess with all of the very scientific stuff that was glued to his head. The combination of all of this, along with a sippy cup full of milk (the poor kid was starving at that point) did the trick.

And because I’m never in the photo and a nurse (or maybe it was the anesthesiologist) offered, we took a truly authentic family portrait (photos are out-of-order, because this obviously happened before they wrapped him up).

By the time the morning rolled around, I couldn’t help but smother my boy with kisses and praise him for doing such an unexpectedly great job of staying calm and not removing any of the sensors from his head (or yanking out his IV port). Perhaps he understood that we were there doing something temporary and important, and that, because his Mommy and Daddy were there with him, he was never in danger. I have no idea if the tests will yield any useful data, but in its own way, the entire hospital stay was a sort of test unto itself…at least for me. It’s clear to me that my son has changed recently, and possibly matured and/or reached a level of cognitive understanding of “the rules”. He worked so hard to do what was asked of him and obey all of the requests and limitations placed on him during our stay in the hospital.

I am so very proud of him.

Natalie Blais Hjelsvold - July 26, 2013 - 3:22 pm

Yahooooo!!! Victories, great and small are spectacular!!!!

M o r e   i n f o