The Anti-Romantic Child by Priscilla Gilman

9780061690273 The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman

Where to start?

I honestly can’t decide if I loved this book or disliked it.  I suppose both.

In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten.  Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia.  Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.

When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned.  In fact, he resists most forms of physical contact and in many ways appears an island.  As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics.  At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.

“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well.  After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me.  There had been no one more familiar to me than my son.  I had considered myself totally tuned in to his needs and had accepted him on his own terms.  In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would.  But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)?  Was it a kind of denial, a refusal to help or even accurately perceive him?  To question your grasp of your child is to suffer a great loss.”

Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.

Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated.  Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:

“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone.  Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”

I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.

Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies.  Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj.  Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.

Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly.  I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible,  by relentlessly plunging him into therapy after therapy aimed at changing him.  Perhaps, however, her summing up of her feelings explains it best:

“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences.  Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others.  But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is.  They are strengths and gifts.  I never want them denigrated or dismissed as ‘splinter skills.’  Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’  I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”

It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions.  I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her.  And yet, she explains very eloquently,

“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis.  He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school.  I’ve always been ambivalent about the idea of labels.  They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj.  Would a label make people more sympathetic to him?  Or would it get in the way of appreciating the complex, intricate person Benj is?  How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids?  Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”

But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive.  In reality, sometimes they can’t be avoided, for all of their pitfalls.

This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature.  Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.

8 thoughts on “The Anti-Romantic Child by Priscilla Gilman

  1. Hi Lisa, Thanks so much for your very thoughtful and lovely review of my book! I would like to respond to some of your doubts and criticisms, however, by providing some context and clarifying some things. At the time my book was submitted for publication, Benj had been given no diagnosis and our understanding of autism was nowhere what it is today. Therefore, there is no way that I could have called him autistic in the book. Two years ago, however, he was given an autism spectrum diagnosis and I’ve learned so much from and become part of the neuro-diversity community. Clinicians’ understanding of autism has developed so much over the past several years, and I’m sure that were three year old Benj evaluated today, he would have been given an autism diagnosis as a young child. Since the book came out, I’ve become a passionate advocate for autistic people and have written a lot more on the topic. See
    http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html?_r=0
    http://www.nytimes.com/2013/08/25/books/review/early-reader.html
    I in no way EVER sought to change Benj with therapy. I always saw the point of the therapy was helping him to become more fully and easily himself. I am a big opponent of ableism in its many forms. I also hear you on labels being valuable and I hoped to convey my nuanced, ambivalent attitude towards them in the book- they can both hurt and help.
    I want to learn more about you and your family now after reading your very eloquent and smart review. Thank you so much for reading my book and for your wisdom and compassion.
    warmest,
    Priscilla

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    • Hi Priscilla. First of all, I have to say that I am flattered that you wrote! Thanks for taking the time to read my review and respond to it.

      I guess it was difficult for me to understand the absence of a diagnosis for Benj by the end of your book. So much of what you described about him did indeed fit my understanding of autism, which admittedly is not through any direct relationship with anyone with autism. I have numerous friends with children with autism, and I do a lot of reading about various kinds of disabilities – mostly intellectual disabilities – just because I’m a mom who has a child with a disability. Certainly, none of that makes me an expert, or even especially knowledgeable about autism, and I’m aware of that.

      As you say, “Clinicians’ understanding of autism has developed so much over the past several years.” Does it seem to you that clinicians are casting a wider net now than ever before, and if so, is this a good thing or not? I’m torn on it. Sometimes it feels like there’s no room for “quirky” or “unconventional” anymore; every kid who is a little out of the ordinary seems to get some diagnosis slapped on him.

      Which plays into the whole “labels” thing. I’m torn on that, too. I actually agree with what you said in your book about labels and diagnoses, and how in some ways they can be helpful, and in some ways very much not helpful. I guess the point I was trying to make in my review is that sometimes labels are unavoidable. My son has Down syndrome; this means that it’s likely the first thing people notice about him because he wears his diagnosis on his face. Over the years I’ve wondered whether it’s a blessing or a curse that this is the case. On the one hand, people see right off the bat that he has Down syndrome, so at least when he behaves in certain ways, people (hopefully) understand that because he has Down syndrome, it means he has certain delays and limitations. On the other hand, people see right off the bat that he has Down syndrome, so the undoubtedly make snap judgments and assumptions, and that stinks.

      We dropped out of Early Intervention when our son was 2, for many, many reasons, but in a nutshell because I did feel so much like it was all aimed at fixing him or improving him or something. I see so much of that in other families of kids with Ds, too – as much therapy as they can cram into each week, all in the name of “helping him meet his full potential,” helping him meet his developmental milestones, helping him ACHIEVE, SUCCEED, EXCEL. It all seems very ableist. And of course, that’s a value judgment on my part, I admit it. In any case, I really can’t speak to therapies in relation to autism, since, like I said, I really don’t know much about autism. I just always wonder, for those children with any type of diagnosis/disability who spend hours and hours every week in therapy, what kind of childhood is that?

      As for me and my family, ask me anything you want to 🙂 I’ve got seven kids (no, we didn’t plan it that way!), ranging in age from 17 years old down to 21 months old. Finn, our little guy with Ds, is our sixth, and he will be 6 this summer. I read A LOT, and have a soft spot for books about disability. I blog about life, Down syndrome, and our family at lisamorguess.com. I blogged about Finn specifically for the first two years of his life at finniansjourney.blogspot.com.

      All in all, I really did enjoy your book, and got a lot out of it. It was almost lyrical to read, and gave me a lot of insight into another parent’s experience. Also, I could very much relate to your desire to create a family of your own that would heal the pain of your childhood.

      Thanks again for writing, Priscilla. I’m going to email this to you as well, in case you don’t come back to read follow-up comments here.

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  2. I know we share different views of therapy and its perceived benefits. As I said to Sandra on FB the other day though-wanting to understand how your child learns and help them and the people around them to adapt to that in my opinion, is not ableism. I’ve heard other parents share your view on what ableism means and it is perplexing to me. We teach all of our children to walk and talk and eat and become more independent and we do that according to their needs- we don’t not teach our children these skills because they have a disability and we feel they should be accepted as they are the day they are born. Children are growing and learning every day. To me this is a very different scenario than a fully grown adult and keeping them from say, a store because they use a wheelchair and the store is up two flights of stairs.
    Ableism is by definition “a network of beliefs, processes and practices that produces a particular kind of self and body that is projected as the perfect, species-typical and therefore essential and fully human. Disability is then cast as a diminished state of being human.” Speaking for myself it’s really offensive to have my intentions towards my own children written off as seeing them as less than because I take them to therapy. It’s an inaccurate judgment and assumption of why I do what I do. It also assumes that I (or whomever you are calling ablest) think there is only one way of being. Helping a child to go through the natural process of development is not the same thing as thinking that a person with a disability is not fully human and not a valued member of society because they function differently than others do. It’s bizarre to me that in your own purported values of being able to live life as you enjoy/value/prefer it that you would judge others intentions so harshly. Granted my understanding of ableism is grounded in a United States definition of it- which is primarily legal- making accommodations and modifications to the environment so people of all abilities can take part in their communities/society and not being able to say sorry- you can’t come in here or do this because of your disability. I’ve always heard it defined as discrimination or prejudice against people with disabilities. Not allowing them access to the same things that if they didn’t have the disability they would have access to.
    The ability to have therapy for a child with a disability- that didn’t used to exist. My sister who has a profound intellectual disability was born in the 1960’s. My mother begged for physical therapy from her doctors and specialists because she believed Michelle was capable of walking if someone who knew how to do this would just put in the time and attention. Doctors told her no- that because of Michelle’s ID there was no point to giving her physical therapy and would not prescribe it. That to me, is ableism. If she had been more valued as a human being and given the same rights as any other person- she would have been allowed to go to physical therapy. Eventually- and only with an institutional placement, she did receive intensive therapy and did learn to walk at the age of seven. It didn’t just develop as it can for other children. From your view as I’ve understood it, you would see my mother as the ableist for wanting Michelle to walk by whatever means necessary. Your version of the definition of ableism and how you apply it to families of children makes no sense to me. In my case ableism is the principal who insisted that Abby doesn’t belong in a regular classroom because she has Down syndrome. Where any other child who functioned as she did would ’t have been questioned in their right to sign up for kindergarten. Definitions as taken from: http://en.wikipedia.org/wiki/Ableism

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    • Nicole, I know you and I have gone a few rounds about therapy. Please know that nothing I write on the subject is a personal attack on you; I always get the feeling that you take it that way. Every parent, obviously, must decide what is best for their own children. It does seem clear that your experience concerning your sister has had a deep impact on you and very much informs the way you approach disability as a parent. Not everyone has had that experience, and I can’t help but think that you are really talking about apples and oranges. Your sister didn’t have Ds, if I recall. She was also institutionalized and deprived of opportunities for inclusion in school, family, and community, and that surely impacted her globally. I’m still not sold that therapy is the golden ticket that so many families think it is – and really, it all starts with the pressure we, as parents, receive from the time our children are labeled or diagnosed. Therapy is pushed on us as THE way we can make a difference, make their lives “better.” And I just don’t buy it. So much of it has to do with what WE (the parents – presumably non-disabled, although I know this isn’t always the case, there are disabled parents of children with Ds) want, what WE perceive as what happiness and a fulfilling life should look like. Frankly, I think inclusion does way more good than therapy does. So much of therapy is aimed at getting them to do this or that sooner or better than they supposedly would without the intervention. Why is sooner or better the goal? Who decided this? What does it mean? What does it provide? Will a kid who walks sooner have a fuller, happier life than a kid who walks later? If you take a group of, say, 10 adults with Down syndrome, can you pinpoint which of them walked before age 2 and which of them walked after? What difference does it make in the grand scheme?

      And we DON’T “teach all of our children to walk and talk and eat.” Those are things that they learn all on their own! Even kids with Ds learn those things on their own – it just often takes them longer than “typical” kids. I didn’t teach Finn to walk, or talk, or eat, nor did I teach any of my kids to do those things. And wanting a kid to walk at all costs? Yeah, I see a downside to that. Because what if he/she NEVER walks? What about other kids who never walk? Placing so much value on physical and intellectual ability devalues people with physical and intellectual limitations as less than in subtle ways.

      Ableism is subtle and insidious. You mention only the most blatant forms of it – an outright discrimination against people with disabilities, a refusal to provide accommodations. But ableism is a mindset. It’s a deeply held bias that favors the able-bodied and able-minded. It manifests in so many ways, among them wanting and working towards making our children as high-functioning, high-achieving, high-everything as possible – because that is perceived to be “better” than low or mediocre. I don’t think there’s anything wrong with wanting and encouraging our children to do their own personal best in all of their endeavors, but as a society, we’ve created these arbitrary, artificial measures of worth that have so much to do with ability.

      Anyway, I’m rambling now. I appreciate you sharing your thoughts, Nicole, and hope that we are always able to converse about our differing views peacefully.

      Did you read The Anti-Romantic Child by any chance?

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      • No- I don’t think it is attack to me personally- but when you write about your preferences regarding it, it usually comes across to me is a negative judgment about people who make different choices than you have that is discussed from an attack posture on those people’s intentions as to why they made a choice, rather than asking or trying to understand them and their choices as opposed to a live and let live position. And while it isn’t about me personally- those choices are my choices and are now being labeled as ableism.

        Maybe the difference in our approaches is just where we’re coming from, for me my history is one story from the disability history and tells me not to take resources (be it educational, government or societal) for granted- I don’t assume that a child will walk,talk or learn without some sort of intervention and that they should have the right to that intervention. Not because walking or talking in a traditional means makes them better than someone else that doesn’t.

        That’s where I disagree with you. I don’t think Abby is better than Finn because she has had therapy and he hasn’t. They’re just two kids with different life experiences. I’m grateful for the expertise of people who have studied these areas and will give me access to their resources. I’ve learned lots of things in life due to other people sharing their expertise with me- that doesn’t make me better. That doesn’t make me worse either though simply because I sought out to learn from others. It doesn’t make me an ableist. What I’m bothered by is your assumption that other people are assuming they are better because their choices are different than yours.

        No, my sister didn’t have Down syndrome, but the way she was treated was the way individuals with Down syndrome were treated- so I don’t exactly see how it is apples to oranges- in both cases I’m talking about access to resources for people with intellectual disabilities that wasn’t always a given. She was institutionalized because she couldn’t get the resources she needed in her community, but could in the institution. Maybe where it is apples to oranges is comparing your experience with mine though- Abby would not necessarily learn to talk on her own- but that isn’t due to her Down syndrome- that’s due to her severe speech apraxia and severe oral-motor issues. I can see where people who haven’t had those issues might not see it the same way. We continue with speech therapy not because we think a talking Abby is a better Abby, but because we see her frustration when people don’t get what she’s trying to communicate. We started because she spent her first year frequently ill with respiratory issues and hospitalized mutliple times because we eventually found out she was aspirating on my breastmilk. My point in the comment before is working on an activity with a child- teaching them- doesn’t equal ableism. We did teach Abby to nurse and to eat and to walk. I get that you think she would have learned those things on her own, but she was around other children that did those things and she didn’t. And while eating regular food in a traditional means doesn’t make her better than other children that don’t- it does keep her safer and healthier if she isn’t aspirating on thin liquids anymore. Her doctors wanted to put in a gtube and bypass the whole oral-motor system. We didn’t want that medical intervention- again not because she is better than other kids who need it but because we felt with therapy she could learn to eat safely. I don’t think the child who walks or talks or nurses or eats sooner in a traditional means is better than the child who does those things later or by less traditional means- but I also don’t judge the parent who has their child in therapy as an ableist. That’s just that child and how their parents choose to parent them. How is a parent’s choice to help their child learn to nurse, eat, walk, talk devaluing the child who never does those things? I’m bothered by your making an uninformed assumtion regarding the other person’s intentions. Saying that having therapeutic intervention in these areas is not necessary is devaluing my understanding of my child because I chose the interventions. Calling them an ableist makes little sense to me and seems like a distortion of the term as it’s used in disability advocacy.

        I appreciate your thoughtful response, and I don’t mean to only pop up on this issue- it always just socks me in the gut each time I read it though. It makes me feel my own intentions are so misunderstood- which considering we only know each other in bloggy-land- I guess that’s not such a stretch 🙂

        I have the Anti-Romantic Child on my nightstand. I just haven’t had energy to put into book reading. Most reading I get done these days is audiobooks- I just finished Out of my mind and LOVED it. I’m curious what you think of that- if you will see the girl getting adaptive communication equipment as ableist as well? I’ve always had this belief that people like her- or people that are labeled like my sister as non-verbal or with singificant intellectual disabilities- that it isn’t that there aren’t thoughts in their head- it’s that technology hasn’t evolved to a level to help them to communicate what’s in their heads. That we don’t as a society understand what intelligence actually is- and to assume that because a person doesn’t communicate or move the way others do that that equates with them not having thoughts in their head is just wrong. I just got Wonder and am listening to that as well.
        Thanks Lisa-

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      • I haven’t read Out of My Mind yet, but it’s on my to-read list. But no, I wouldn’t consider an adaptive communication device any more ableist than a wheelchair. There are certainly devices and technologies out there that help people get around, express themselves, and ultimately perhaps live with a higher quality of life than they might otherwise.

        We live in an achievement-obsessed culture, Nicole. Surely, you don’t deny that. There is a general mindset that achievement and success (oh, and beauty – let’s not forget beauty) – and “success” is usually defined in a very material way – means better lives, better people. That is the mindset I am cognizant of and feel like I am swimming upstream against. Consciously or not, it devalues those who cannot accomplish what non-disabled people may be able to accomplish. It’s what drives the termination rates of prenatally diagnosed cases of Ds! Disability is seen as a negative, as a liability, as pain and suffering – rather than just a variation of the human condition.

        That is not to say that assistance and resources should not be available to people with disabilities to help them live better lives. But I think we need to start questioning how exactly we define quality of life. And I very much believe that an entire industry (early intervention) has been built on society’s views that disability = less than. I think it feeds on parents fears and confirms over and over again that achievement is everything.

        Of course, there are absolutely factors like what you describe with Abby aspirating that have to be therapeutically addressed. That’s a medical issue, though.

        I don’t discount therapy outright. I think we all, as parents, should question it, though. Why are we subjecting our child to it? What do we hope to accomplish with it? What is the value of the end-goal, and why? What does the therapy profess to accomplish for the child? What is the cost (time, money, impact on the rest of the family, having to forego other activities, etc.)? I feel like so many parents dive into early intervention head first without asking themselves these questions – in large part because we are pressured to. I remember sitting in the NICU with Finn when he was only days old, recovering from surgery, and having a social worker come in and explain EI to me, telling me that I needed to get him started in therapy “as soon as possible” if I “want what’s best for him.” That’s what a lot of parents are told: responsible, loving parents who want the best for their kid will immerse their child in therapy – and really, it’s to “normalize” them as much as possible (which is evidenced by the fact that every assessment measures them against typically-developing children, amplifying their difference, their “deficiencies” (I always feel like, “well, Finn’s not deficient by Down syndrome standards!”). I don’t know, Nicole. I guess I just got to a point where I decided it was far more important for me to allow Finn to have as normal a childhood as possible, certainly addressing specific issues that emerge, but mainly marked by love, nurturing, acceptance, and inclusion. And I’m certainly not saying that parents who have their children in therapy don’t love, nurture, accept or include them. But for the two years we did EI, I felt that there was wayyyyyy too much focus on trying to change Finn, to “fix” him. Even his siblings saw it that way – that there was something intrinsically “wrong” with Finn, so we had to do all this therapy to “help” him. So we quit therapy and he continued to progress anyway. On his own terms, on his own timeline.

        Finn does receive two thirty-minute sessions of speech therapy per week now (and has been for a couple of years), but to tell you the truth, I’m not even exactly sure why we do it. He adores his speech teacher, so there’s that – she’s one more positive force in his life. But even she says that she can’t attribute Finn’s verbal abilities to her or to ST in general. We don’t do any therapy over the summer, and it’s never set him back. He receives minimal OT at school, and I think they are addressing specific things like cutting with scissors and holding/using a pencil. I’m fine with it as long as he enjoys it. It’s not worth it to me if it becomes something negative in his routine. He can always use adaptive scissors and if he doesn’t learn to write, there are alternatives. I am not hell-bent on making him fit the “norm” because I’m not at all convinced that fitting in the norm assures anything – and it’s not even possible anyway. I feel like instead of trying to make or “help” Finn conform, it’s more important to put my efforts into trying to break down the prejudices that abound, however subtle they may be.

        We all make parenting choices that we feel are best for our families. I’m not slamming anyone else, and I’m sorry if you think I’m too harsh. I don’t feel that everyone else should do what I’m doing. I absolutely think that people need to question the status quo more. Way more. I’m sure there are other parents out there who believe that I am shortchanging Finn by not immersing him in therapy. That’s fine, they can think what they want.

        Peace.

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  3. See and how you say the devices/technologies help people express themselves and potentially live a higher quality of life than they might otherwise- to me that is the intent of early intervention and therapy. Certainly that gets distorted- because yes- we do live in an achievement culture- but I don’t see that as a bad thing- but I don’t look down on other people as a rule of thumb either. I do work hard for the things that are important to me- some of those things being material- I like making money to pay for a mortgage and feeling secure in my job, my health insurance and my home. I liked going to college and studying and learning outside of college- for me those sorts of goals, or even the fact of having those of goals isn’t in contradiction with being an empathetic, citizen. I do value independence- my own, my own ability to take care of myself and I do hope to equip all of my children to live as independently as possible- and to me that means planning for the opportunity for college should they choose that route. Having grown up in a family where my generation was the first to go to college I don’t assume that achievement is a matter of wanting it. I’m frequently annoyed by an attitude from others that they are better, smarter, richer, prettier etc than someone else. So yeah- I don’t deny at all that it is out there. I tend to avoid it though- when that sort of personal-horn-blowing is someone’s most noticeable characteristic, we don’t become good friends. I completely agree with your perspective- I just don’t think that the therapy, or EI, or going to college is the cause of the problem- that’s a human flaw, a societal norm that’s at issue and I don’t think that the desire to do better for yourself or want your kids to have an opportunity to do “better” than they may have otherwise makes a parent an ableist. I don’t think that the “industry” is built on an ableist intention. I do think that certain therapists, and perhaps the views of outsiders might feel that way. We’ve met many a therapist who essentially were jack-asses, condescending and inappropriate to work with families and children. As an adult residential provider to adults with developmental disabilities though (it’s what I did during and after grad school) we had a very person-centered approach- get to know the person and what is important to them, what they want in life and how do we make that happen. I admit- I’m an idealist- I love taking someone’s idea of they want and trying on a variety of ways to bring that into their lives creatively. The intent behind how these industry services are created is one way, I agree though- how they are often carried out suck. I also hated walking into someone’s home and finding out that the staff person we hired is dealing drugs out of the person with a disabilities home or is stealing their money or essentially bullshitting the agency in one way or another- and unfortunately- that was not the exception most weeks. Really the adults that had disabilities that I worked with back then weren’t the challenging parts of my day- it was the underpaid, undermotivated overworked staff that were the problem. As a service provider I was trained, and trained my staff that their goal was to know how the individual we supported defined a good quality of life and support them in striving for that.
    It’s good to question it- absolutely. And at the point that it feels like subjecting our kids- then to me the problem isn’t the industry but the sucky therapist. We’ve left more than one because of their attitude in how they work with Abby. And you are right- the industry does play on our fears- and I would include the medical model in that grouping as well. I still find myself questioning Abby’s capacity to do something just because she has the labels of Ds and apraxia. I underestimate her daily. And she lets me know that. I find myself fearful of what I should be expecting of her- am I expecting too much, not enough- in a way that I don’t question my expectations with the other girls. I was uncomfortable switching from service provider to service receiver when she was first born, but for me at least that wasn’t outside of normal, having grown up with Michelle and then studied disability, advocacy and community integration in school and then having worked in the field. Now though- with the education system- I know I don’t like special education/self-contained settings- but as to what to do with that- how to make sure that she’s ok and getting what she can out of the day- that I’m much less confident in. And so now I’m feeling that pressure you talk about to conform and do what has always been done with education here- but not liking it. I’m clear that they don’t want her here in a regular classroom. Charlie and I want her to be able to get a high school diploma if she’s able. Maybe she won’t be and that’s ok- but I don’t want them starting out keeping her from that path simply because of her diagnosis and the fact that they’ve never done it before which is the case here. It might vary around the country- but in South Carolina- if you are in a self-contained track- you are not working towards a diploma. There is an assumption that children in that track aren’t capable of it. And again, maybe she won’t be. But to put her in that track from day one seems wrong to me. They’re pressuring us to do it just because of those two words- Down syndrome. If she were the exact same Abby without those two words attached to her file- they wouldn’t question letting her be in the same class and work from day one towards the same educational goal as everyone else starts out with.
    But also because of my experience as a service provider I do have a desire for her to be able to communicate to her fullest extent and to be independent to her fullest extent. Not because I think that others that can’t are less than- but because I don’t want her to be victimized by service providers in the future when I’m not there to be momma-bear and I know that who works in the industry isn’t likely to change. Some will be good and kindhearted and motivated to support her and others will take advantage of and try to control her.
    It’s good to question it- absolutely. And at the point that it feels like subjecting our kids- then to me the problem isn’t the industry but the sucky therapist. We’ve left more than one because of their attitude in how they work with Abby.

    I hear what you are saying though. And I agree- kids need time to be kids. I see why you made the choices you did- and if I had that same experience I might have done the same. There is this sort of expectation from providers of a learned helplessness on the part of the parents. It took us a few months to break up with the first therapist that Abby didn’t like. I wish we had felt more confident about that earlier on and not, as you say, subjected her to that. She was miserable. The therapist insisted it wasn’t her- but it was. For whatever reason- Abby hated her. Like you describe, I felt that pressure to do “what the expert” said out of fear. It took this therapist saying she felt certain Abby had a sensory processing disorder and that we needed to start a brushing program to desensitize her and make her more compliant for me to start to question her. At the point any therapist is telling me I shouldn’t start something if I’m about to get my period- because I’ll be irritable with it- yeah- we’re out. 🙂 I told her at that point I wasn’t willing to do that and that I disagreed that she had a sensory processing disorder and that I felt it was a personality conflict and wanted to try another therapist. And we were right- from day one away from this therapist Abby started having fun in therapy again. We’re probably going to drop school physical therapy too. Abby doesn’t like the therapist and frankly the therapist needs a behavioral assessment- she’s the problem with their relationship- not Abby. She’s not creative in working towards their goals at all. And the goals aren’t anything that are going to improve Abby’s quality of life that can’t be addressed naturally.
    Thanks for the discussion Lisa- I’m glad we had it- I feel like I get what you are saying more now. xoxo

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