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ASPartOfMe
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17 Mar 2019, 3:14 am

Mom: People don’t want to hear the ‘ugly details’ of our struggle to raise and educate our autistic son. Here’s the truth anyway

Max Masucci is an 11-year-old boy who has been diagnosed with a severe form of autism.

His parents, Greg Masucci and Maya Weschler, struggled to find the right educational setting for him in Washington, a story chronicled in 2013 in HuffPost by Joy Resmovits, but they couldn’t, and eventually moved from Capitol Hill to rural Virginia. There they bought a farm, which they turned into a nonprofit group called A Farm Less Ordinary that provides jobs to people with autism. You can read about that here, in this 2018 Good Housekeeping article.

The post below was written by Weschler, a former business executive, who details the daily struggles she and her husband face as they try to keep their son safe and manage a nonprofit organization at the same time. Her descriptions are raw and real, and her story speaks to the issue of how much permission we give ourselves, and others, to be honest about our lives.

Her story also speaks to the agony that many families experience daily trying to raise children with severe disabilities without adequate support from schools and school districts.

She posted this recently on her blog, which you can find here. She gave me permission to publish this, which is worth your time to read.

Quote:
Family members have also pleaded with me to stop being so honest about my opinions on Facebook, with an eye on how these status updates might affect the non-profit we run and on our standing at my daughter’s school. And while I have always prided myself on “educating” people on “the outside” about what it’s really like on “the inside,” I agree that it has become increasingly unwise to do so, as it could reflect poorly on our growing public identity tied to our disability-centered non-profit.

My Facebook-free life was going along swimmingly because — shockingly — it’s not that hard to get on with one’s life without knowing what everyone else is eating for breakfast … until I ended up on a party-line Facebook messenger discussion among members of my old graduate degree program, where they are currently discussing getting together for their 15th reunion.

I found myself staring at the conversation, wondering exactly what the hell to say to these people. Do I tell them that we are broke? That paying for my son’s therapies and child-care has ruined us, financially, so a trip to Chicago isn’t really in the budget at the moment?

Do I tell them that arranging for child-care (at what age will I stop calling it “child-care”? When he’s 30, and still requires round-the-clock support, what term should I use for the uninitiated?) for a 2-3 day trip, so that my husband can still work while I’m gone, is kind of a tall order at this point?

Or do I tell them that I really don’t want to sit around and have polite conversation about their PhDs and growing resumes, while I simmer in my own internal misery? Again, like my hiatus from Facebook in general, I’m going to assume that a silent retreat will be most appreciated by everyone.

A complete stranger recently contacted me, and introduced me to some new terms that I didn’t even need to Google to comprehend: chronic sorrow and disenfranchised grief. These two ideas have kept me up at night lately, as they are apparently the academic labels for what I have been experiencing since October 2010.

Like many articles I’ve read about the experience of raising an autistic child, they are things I already understood deep in my bones. But having words for these two obstacles that get in the way of my interactions with the outside world has somehow taken my breath away . ..

don’t want to sit at a table with a gaggle of “normal” moms during my daughter’s school events, because I feel “chronic sorrow.” When they gossip idly about their daily, non-autism-dominated lives, I die a little inside. It’s no one’s fault that they have a non-autistic child, and that I have a son with severe disabilities. But the distance and resentment are there, nonetheless.

Also, no one wants to hear the truth, when they casually ask how I’m doing, or how my holidays were. They wouldn’t know what to do with the truth, however much I sanitize it for their comfort and digestion. People want to hear about progress. They want to hear about holiday parties and warm, snuggly family nights by the fire. At the very least, they are prepared to hear about how Junior enjoyed his new toys, or how we’ve just been laying low over the winter, watching family movies on TV and baking cookies.

Really, how would one respond to this information? That we had no one to help us with our son for two weeks, while he stood on glass tables, literally attempted to climb the walls to get hidden-away food, while we screamed at family members to lock doors to basements and bedrooms so that he wouldn’t get in and break the artwork they had piled inside so that he wouldn’t be able to access it in the few rooms that are designated as Safe Zones while we visit.

Or that we had to scream to one another that “I have to pee, so you need to watch him for the next five minutes,” remind family members to put both arms around their plates and drinks so that he didn’t steal their food or drink their alcohol, and that we literally had minute-by-minute countdowns until the magic hour when we could medicate him to sleep for a few hours — before he would wake in the middle of the night, in a soaked bed that would require a 3 a.m. sheet change and a second dose of medication to get him to 7 a.m., at which point we would spend another 13 hours as zombies, trying to prevent any major disasters from taking place before the next round of medication.

Who wants to hear this . . .? What do you say in response? What similar experience can you access in your life in order to demonstrate the socially-required empathy called for in a back-and-forth conversation?

Similarly, what could you possibly say to me on Facebook, if I were to lay out the facts of our daily existence, publicly? There really isn’t a Hallmark card or GIF for this . . . So I save everyone the trouble, and mostly say nothing. Because, contrary to some family members’ belief that I share too much on social media, the reality is that I share practically nothing. Which is apparently still too much. Because these occasional public signals of my internal chronic sorrow make people uncomfortable.

There is another element that also factors into my do-I-share/don’t-I-share considerations: the Proud Autism Parents who swear that neurodiversity is a thing I should respect, that autism is another way of being, perhaps even an evolutionary byproduct that the world needs to alter itself to accommodate, rather than a world that their autistic child needs to adapt to.

These parents seem to insist that I should love my son “just the way he is” and find ways to celebrate his autistic identity and not mourn the life that could have been his (and mine), if he weren’t lucky enough to be autistic. My immediate reaction to these people has generally taken the shape of an unposted, enraged Facebook response on a bad day, and a cold and silent shoulder on another day … as I weigh my public persona and the responsibilities of representing a non-profit against my instinct to shout at these people that evolution and their son’s Aspergers have nothing to do with the prison (complete with locked doors, alarm triggers, candy, and sensory toys) we have created out of our lives in order to keep my son safe, our bills paid, and reputations intact.

Yada . . . yada. Essentially, I am not supposed to feel this way because it’s not politically correct. It’s not what a loving mother would feel. My grief for the life we all could have led — if my son was not autistic — is not allowed.

So when I want to share with the world that I am hurting, that my son is struggling, that we are suffering, these people also don’t want to hear about it. Or maybe they do, so they can remind me about what a blessing all of this is, if only I would open my mind to the benefits of neurodiversity. Either way, I remain mostly silent.

Facebook hasn’t missed me. I could share some happy photos of my kids playing in the snow that would be sure to score lots of likes. I could sit down at a table full of normal moms and play along, nodding and laughing at all the right moments. I have in the past, and I will again. It’s what one does.

Because I’m not supposed to share the ugly details. I’m supposed to smile. Play along. Keep my answers to “how are you?” short, vague, and easygoing enough so that the conversation can continue. And for the most part, this is what I do. But underneath it all is the truth. And setting it free would probably make everyone uncomfortable. So I don’t.

Because I’m not supposed to share the ugly details. I’m supposed to smile. Play along. Keep my answers to “how are you?” short, vague, and easygoing enough so that the conversation can continue. And for the most part, this is what I do. But underneath it all is the truth. And setting it free would probably make everyone uncomfortable. So I don’t.

One always wonders in these situations if the parents attitude/burnout makes the kids “more autistic”.

Dispite the language used I cannot put this mother an autismphobe catagory as they run a non profit farm that provides jobs for autistic kids. But they have IMHO made decisions that helped other autistics at the expense of their own autistic offspring.

It is unfair and all of that but in America care is a pay to play system. Running a non profit usually guarentees not enough money to pay for care for a kid in need of care 24/7. They gave up and moved to the rural area where most likely services are non existant.


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League_Girl
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17 Mar 2019, 10:46 am

I think it's sad when crazy activists out there try to shut the parents up who have children with severe autism. They only want to hear the good side and have it all be roses and make autism sound so positive and how easy it is to raise an autistic child and it's just a brain difference and a different learning style. This isn't how it is for all families with autism because it's a spectrum and some have it so severe, the family can't function and they can't go anywhere and it actually makes them poor because of how much support the kid needs that maybe both parents cannot work full time or the kid needs more therapy it eats away their income.

I honesty have started to see activists as people who have an agenda and see them as bullies. It's all about being right and shutting down anyone who disagrees with them or don't share their perspective. You are automatically a Nazi or a bigot, everything is all your fault if you don't match their rose colored glasses. Anyone who claims to be a activist I will turn the other way because I can't trust them.


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I have a quilt of labels. I had a language disorder and a speech disorder. Then communication disorder NOS. My other diagnoses have been Language Processing disorder, dyspraxia, SPD, OCD, ADD, Asperger’s, anxiety disorder, adjustment disorder, anorexia nervosa. My mom’s labels of me are: eating disorder, anorexia, social anxiety, PTSD, just being sensitive and having the victim complex when I was a kid. And of course she says I’m normal and says the only thing I had as a child was language. Huh? I must have been a shitty person then and maybe a difficult child I was who had to be labeled because of incompetent school staff and mean kids who didn’t accept differences and because I was trying to be “normal.” :/

My blog: https://mynoneabdlthoughts.wordpress.com/


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17 Mar 2019, 12:18 pm

I agree with this mom that few people want to know the truth about the struggle parents have with the severely autistic child...and adult child. I have worked with many families facing this kind of situation and it has been tricky for me to post here, where so many are more able. The experience of more severe forms of autism is screamingly bad for the parents and for the child. I truly believe that these children are miserable. And I know the parents are too. There is little that can be done to help them, even when services are in place. Because basically, we don't know how to "treat" severe autism.

Neurodiversity can be great, but not necessarily if you (or your child) is at the low end of the bell curve. I do see room for expanding the ideas behind celebrating neurodiversity and possibly opening windows of new opportunities to help the children at the severe end of the spectrum. It will probably take Aspergians to work on this problem to find a new way, besides the ABA and meds, to treat these children so they can be happy and loved, as I believe they want to be.


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valarmorghulis
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18 Mar 2019, 8:55 am

Can I ask a stupid question? What does "severely autistic" actually mean? Before I had read much about autistic community I would have thought it to mean "low-functioning" autistics but after I have read about the critique of the use of functioning labels it sounds to me that it alone is not the same thing than the type of severe autism described by this mom. So is it more related to very strong autistic symptoms combined with intellectual disability and possibly other disabilities? The behaviours this mom described don't even sound particularly autistic to me. Or am I wrong?



ASPartOfMe
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18 Mar 2019, 11:08 am

valarmorghulis wrote:
Can I ask a stupid question? What does "severely autistic" actually mean? Before I had read much about autistic community I would have thought it to mean "low-functioning" autistics but after I have read about the critique of the use of functioning labels it sounds to me that it alone is not the same thing than the type of severe autism described by this mom. So is it more related to very strong autistic symptoms combined with intellectual disability and possibly other disabilities? The behaviours this mom described don't even sound particularly autistic to me. Or am I wrong?


Low functioning autism is defined as autism with intellectual disability.
Like autism itself what is “severe” is subjective based on observed behaviors. We did have a user that described herself as severe so while severly autistic people are often intellectually disabled severe and low functioning are not the same. Then there is the question if some severe autistics that appear intelectually disabled are actually not intellectually disabled but appear that way to be due to extreme sensory, communication, and thinking differences.

Not knowing physical boundaries is an autistic trait. And autism is often accompanied by co morbid conditions.


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warrier120
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18 Mar 2019, 1:36 pm

It's a shame how these "autism rights movement advocates" want people to assume that autism is all peachy and is never challenging to live with. I for sure have had problems legitimately related to autism or the comorbid conditions I have. This does NOT mean I support a cure, however.

There seem to be two extremes when regarding autism-related debates: one is the pro-cure activists, who see autism as nothing more than a burdensome disease with absolutely no positives, and the other is the radical ARM activists, who believe that autism is completely advantageous and has no challenges whatsoever.

It's best to assume that, like everything, autism comes with both advantages and disadvantages.


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Your neurodiverse (Aspie) score: 93 of 200
Your neurotypical (non-autistic) score: 125 of 200
You seem to have both neurodiverse and neurotypical traits

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ASPartOfMe
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18 Mar 2019, 5:54 pm

warrier120 wrote:
It's best to assume that, like everything, autism comes with both advantages and disadvantages.

^^^^
This


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