Intro to my processing book

Sometimes I'm looking for this bit of writing I did what feels like a bazillion years ago and have trouble finding it. I'm posting it here so I can find it more easily in the future...

In the years following Daniel's diagnosis I read everything I could get my hands on with regard to anything that might apply to Daniel, especially that which was written about autism. A ton of it was very helpful but even that which helped us also hurt us because it assumed unquestionable the notion that autism was bad; a disease to be cured and eradicated. That bothered me so much I decided I wanted to offer another voice. The year after his dx, I wrote this introduction to a book that hasn't come to be and quite likely never will, but the essence is here, and I think it's worthy of keeping in mind for parents in the weeks and months following their child's diagnosis. For what it's worth, I share it here...


Introduction... 

Throughout history, there have been many children born with profound exceptionalities and these exceptionalities are evident so young that it becomes very hard to know when to "parent," "teach," "guide," or "discipline,” and when to "observe," "learn," and "revel." My son is such a person, and he has taught me much, far beyond the sorts of lessons one expects a child to teach a parent. 

As an example, one Sunday when Daniel was three, after a disastrous (and quite unsuccessful) day of intensive potty-training, Daniel climbed down off of a ladder where he'd spent most of the day gazing at the sky. He took me by the shoulders, stared deeply and intensely into my eyes and with equal depth and intensity spoke in a voice suddenly much older than his usual three year old timbre, and said 'Just wait for the sky to come, Mama. It will be here soon.' Then he climbed back up onto his ladder, looked back out the window, and said 'Escucha, escucha.' (Listen, listen)." 

I shivered. Then I did a bit of research and I learned that words like the ones Daniel spoke at that moment have been found in the texts of the wisdom traditions for thousands of years. In every tradition, the meaning is simple and profound. Somehow, someday, Heaven and Earth will merge together and all will be one, and all will be well. 

Daniel has been diagnosed with Autism. As of this writing, Autism affects more than 1 of every 50 children, and 1 in every 31 boys, and its prevalence is growing. According to one leading autism science and advocacy organization, “Autism is the fastest-growing serious developmental disability in the U.S.” It's clear that nearly everyone effected thinks of Autism as nothing more than tragedy. This is where this book will differ from the overwhelming majority of what exists to date in the literature on raising children with autism. Diagnosis is intended to serve only positive purposes, but in fact, it is very often violent and diminishing, extracting from a person all the specialness and gifts that they have to offer the world. In Parenting Christ: Waiting For the Sky to Come, I neither sugar-coat the reality of raising a child with Autism, nor do I pretend that I would change who my son is. Instead, I share my experiences of parenting Daniel. 

Whether readers are parents, relatives, caregivers, or professionals loving and serving children with autism, or whether the reader is an adult or adolescent with the diagnosis, readers are invited to consider the people they love with Autism in a way they likely have not before. This book is given the title it is not because I believe my son to be a Messiah, but because he is profoundly exceptional in the way that so many children are. We, as individuals and as a society frequently misunderstand these children, especially when they are still too young to teach us what we need to know in a language we can understand. This book is the product of my efforts to understand. I share it publicly especially for other parents who at some level already understand that their child's sometimes disabling exceptionalities are still something more than disability; for the neighbors, friends, and relatives who seek to better understand someone with an autism spectrum diagnosis; for the professionals who love these children more for who they are than for who they can be made to be; and for every person with autism, from infancy through adulthood, who needs to hear that all that is intrinsically who you are is right, good, intended, and whole.

A joyful mama's thoughts on early assessments and interventions

Reflecting on Matthew's well-child appointment on Monday... Matthew's pediatrician granted months ago my requests for referrals for speech and occupational therapies, as he is in "the gray area" for speech and fine motor milestones; but she admitted Monday that unless parents strongly advocate for this,  she NEVER refers babies and toddlers for developmental evaluations/interventions under 18-24 months. She considers the assessment of "need" under these ages to be too subjective and that interventionists "can't really do much" to facilitate progress until kids are older. (I haven't minded this about her because I'm like a hawk with my kids' development, and even though she thinks I'm silly, she does grant my referral requests.)

Anyway, this is a very common phenomenon amongst pediatricians and I think it's dreadful. I don't understand why our society has assigned assessment and monitoring of little ones' early childhood development to a group of (albeit well-meaning and otherwise quite knowledgeable) professionals whose training simply does not devote any meaningful time or attention to either milestone quality or timing, or to what achievements are possible when interventions begin as soon as delays are identified, ideally under 12 months. I'm sincerely bewildered by the "wait and see if it fixes itself" attitude. I asked the provider why she doesn't refer sooner and whether she fears any sort of harm if referrals are made more promptly and she answered, "no, I certainly don't think any harm can come from it. Extra stimulation is never a bad thing. I just don't think it's really necessary."

Professionals who obtain licenses to practice medicine ought to be able to think logically, and ordinarily medical providers are quite linear and logical. I appreciate this about them. This position, so typical amongst pediatricians, is just not logical. The thought seems to go that "a serious problem might be developing which could be completely averted with intervention now, but since maybe there isn't, let's just ignore it and let the problem grow bigger and bigger until it reaches a severity and level of entrenchment that it might require many more years of therapies and treatment or even never be correctable." Yeah... No. Not when it's my baby's future on the line. 

This is not an apathy issue. This provider is extremely hard working; sometimes researching issues and tracking down journal articles, sending them to me after appointments. This is not an intelligence issue. She is quick, insightful, and highly observant. And as I noted above, this is not just this particular doctor. We went through 7 pediatricians in 3.5 years with my older son before one of them looked at the massive number of skill deficits and unachieved or poorly achieved developmental milestones and muttered under her breath, "Maybe Aspergers? But probably not. You could get an evaluation of you really want to."

This is an issue of assigning the wrong job to the wrong person. We do not ask our accountants to diagnose/treat our cars and we should not ask our doctors to diagnose/treat developmental differences. 

There is a reason that there are billions of federal dollars allocated each year for developmental interventions with kids under two. It's because those interventions work. Those dollars stop at age three because by three efforts shift from fixing the problem to coping with it. It is very, very, very troubling to me that we have entrusted the medical profession with oversight of infant and toddler development, yet have either seriously miseducated or failed to educate them about what angst can be averted with interventions in the first three years of life. 

Now, while my son's pediatrician didn't say this, I suspect that other than not realizing what is possible with early intervention, the reason providers don't advise interventions when delays first present is that they don't want to worry parents. God knows parents worry enough as it is. But parents worry a lot more about what pediatricians don't say than what they do, and there is absolutely no need for an intervention referral to cause anxiety. To the extent that it does, it's only because our society makes such "a thing" about it. It's not a thing; it's not a big deal at all. Is the kid perfectly fine? Probably. Would the kid have caught up at some point? Likely. Will life be easier and more pleasant for everyone if little things get corrected while they're little? Absolutely. This is not different than a vaccine. Prevent problems. Just prevent them. 

Our family is committed to normalizing early intervention to the extent that we are able. In fact, we decided before we started trying for Matthew that we would have any future children's development evaluated periodically by experts in that field, and that we would welcome any interventions offered with joyful hearts. It's not dramatic or shameful or scary or even all that interesting. It's just proactive parenting. 

Since we met our then only hoped-for baby, we find that we have a gross motor baby. He loves exploring the world and is busy doing that. I really think his energy is just devoted to that exploration and that he's less interested in learning to talk or practice fine motor tasks. He is bright eyed and happy, socially engaged, advanced in social and emotional milestones. I'm 1000% certain he's not on the spectrum (though it would be fine it he were) and I'm entirely certain he'll talk and do fine motor stuff when he feels like it. At the moment he just doesn't. That said, because he's interested in gross motor exploration and isn't doing some things that most babies his age are, he qualifies for some playtime sessions with some really fun grown ups that he loves and love him back. That's all it feels like to him, anyway. So why would anyone not embrace that for a child? I really don't know. After all, "extra stimulation is never a bad thing," and isn't it better to fix little stuff while it's little?