Shhhhh….
Can you say that with your mouth closed, please?
-Brooke (whenever she is tired of hearing what you have to say)
***
It feels like a lifetime ago. We were new to the world of autism. Brooke had just recently been diagnosed and both Jess and I were reeling.
We didn’t know jack shit.
We began to work with a professional, a person with advanced degrees, years in the field and promising advice. Some of what this person advised us to do helped make life easier, easier for Brooke, for Katie, for both Jess and me. The advice was delivered with the authority of someone “who knew”. There was never any doubt about whether the advice was right or wrong.
Looking back, I realize that I saw what stuck, ignoring what didn’t.
A couple of years later, this professional welcomed his/her own baby into the world. Two or three years after that, the baby would be diagnosed with autism. The professional with all the right answers was completely lost. The advice so authoritatively given, suddenly didn’t seem to work or make sense.
To the credit of the professional, he/she admitted as much.
***
I tell this story not to put down the professional that had worked with Brooke so many years ago.
No, the professional always had the best intentions for Brooke at heart.
And by no means am I advising any of you who are parents of autistic children to ignore the advice of the experts and professionals you may have surrounded you and your family with.
The reason I tell this story is because too often I see advice given to parents, whether via the blogosphere, Facebook, Twitter or whatever, by folks who don’t…have…kids.
Your child won’t eat A, B or C? Just do this.
Your kid does yadda yadda yadda in public? Obviously you aren’t doing this simple thing.
Your teen is misbehaving? Just say this.
Your child isn’t active? All you have to do is be a good model.
You kid is overweight? Just help him make better choices.
I’m sorry, but if you don’t have kids, you can give advice until you are blue in the face, and I really don’t care if you have a bunch of advanced degrees from a bunch of Ivy League Schools or whether you’ve got an AA from an unaccredited Bible School or whether you worked as a nanny for a number of years, you just…don’t…know.
The only exception to this, and this is important, is if you have lived through or with the particular subject you are talking about. Case in point, autistic adults have every right to talk about what worked and what didn’t work for them as children. Extremely Tall or short people can talk about what it was like growing up in a house that may not have made every day activities easily accessible.
***
Here’s some advice if you aren’t a parent or do not share the fundamental trait of the child and topic in question, and you have some great pearl of wisdom for those of us struggling with our parenthood:
Go ahead and say it…just do it the way Brooke will sometimes advise me on how to tell her something – Can you say that with your mouth closed, please?
***One last thing – Jess was nice enough to post this on her blog and I received a comment from a teacher essentially saying, “hey! what about us?”
I felt terrible. We have been blessed with some fantastic educators on Brooke’s team throughout the years, whose advice has been vital to not only Brooke’s progress but our family’s as well. What I failed to convey in this post is that it is directed more toward the “sanctimony that we often encounter out there. The, “all you have to do is this, and that will stop,” followed by righteous indignation when one suggests that perhaps it’s a little bit more complicated than that.” (Jess). If you are a childless teacher who “gets it”, please know that this was not, and will never be, directed toward you. As a former teacher and the son and son-in-law of educators, I know how hard you work, how much you care, and how much you mean to families like mine.
Run Luau Run 
Love it! Sage advice, Matt!
Love you,
Mom
It’s funny, as somebody with Asperger’s I’m finding I’m lost myself now that I suspect my son is also on the spectrum. As usual I appreciate your candor, compassion and willingness to share.
[…] he did. He changed changed the post, most saliently by adding the following, just like this, in bold, italic […]
As a special education teacher, I feel like you give us no credit. Your apology is not because of what you feel, it is to protect your whole “perfect family” image. People expressed hurt feelings, so you posted an apology to save face. I’m confused why you felt the need to lash out in a large public forum on people who have probably helped you a great deal on your father journey?
I look at the parent/teacher relationship as a team. Yes, your child is yours. However, for 7.5 hours a day- they are mine. They are not my kids, but they become “my kids”. I look at the parent/teacher relationship as fluid with constant collaboration. Is something is not working at school, I ask what is working at home. Similarly, if something is not going so well at home, I am asked what is working at school. I spend a whole lot of time with your kid, and feel that it is ok to give advice. I take your advice. You have the final decision as to what happens with your kid, but I am an important piece of the village it takes you raise your child. To raise any child- disability or not.
The goals of the parent and teacher are the same. How can we provide and prepare each individual child for the best possible life. You have insulted a large group of people who work tirelessly every day for the better of your child. Of every child. I may not have my own children, but I have worked my ass off to provide and to prepare “my kids” with and for the best possible life.
Special Ed Teacher,
My original post was written in response to a “health” blogger giving canned advice on how we should all raise our children – the tone of that post was “it’s simple, just do A, B and C”. My anger was directed at her and those like her that A) don’t have children, B) seem to think parenting is easy and C) think so because they nannied for a few years. If you read Jess’ post, you would understand that after I wrote the original post, she very urgently reminded me that I was essentially silencing autistic adults regarding advice on how to parent autistic kids.
I had reacted to something with a broad paint brush – have you never done such a thing?
The point of her post today was when that fact was pointed out to me, I quickly realized what I had done and fixed it. It was not an “image” thing as you would suggest (and I’m pretty sure between the two of our blogs, the “image” of our family is pretty messy). My autistic daughter may some day read my blog. I want her to know that her father understood that when he made a mistake, he fixed it – not for image, but for what is right or wrong. Which brings me to today – I hadn’t thought of the teacher angle. It hadn’t crossed my mind, but when a teacher very kindly essentially said, “hey! what about me?” I realized that perhaps, again, I had been too broad in my strokes.
Now, let me get to this:
“Your apology is not because of what you feel”
Apologies to save face are meaningless – they are not apologies, just words. If you’ve read anything else on my blog, you would know that I am generally unapologetic and tend to use stronger language than Jess is comfortable with. You are being quite presumptuous telling me what I feel. How could you possibly know how I feel?
Should I question your ability as a teacher because you insulted me and reacted in anger to something that, quite frankly, was never directed at you? Of course not. I don’t question that you felt insulted and hurt. I’m sorry that my words did that. Have you never said something directed at a particular group and inadvertently lumped in others? If the answer is yes, then I hope you understand…if the answer is no, well…
To Special Ed Teacher – I didn’t read a condemnation of teachers in Luau’s blog at all. He was not telling people who know Brooke to not offer advice, so much as stating that people who do NOT know Brooke are best off limiting their “helpful” words. It is the “cookie-cutter” responses which I would find offensive, and I am sure he does as well.
As someone with experience in the area, you know full well that what works wonderfully for child A might cause a completely different and negative reaction in child B. You see this. Some “expert” a thousand miles away might tell you “this will work”, but when you try it, does nothing, or worse, elicits a negative response. Luau and Jess would never intentionally insult those who work tirelessly with special needs children and adults; however, due to the nature of the differences between people, those “one size fits all” hints are best stated as per Brooke’s wonderful suggestion: “Can you say that with your mouth closed, please?”
Thank you, Luau.
Please know that not all teachers read this or took it the way that “Special Ed Teacher” did.
I could say a few things myself…and have on my own blog about “Special Ed” in general…but I won’t.
As a teacher who does truly love “her” kids…the only advice that I will ever give is “hey, I’ve seen this work before and have seen it work really well. It *might* work for your kid. If it doesn’t, we’ll keep searching.”
The job I am in now, I spend most of my day doing that, because everyone I work with considers me the most educated/experienced with people on the spectrum. I am honored that I am the one that gets turned to, but it baffles some of my co-workers that I will not just tell a family to “do this”. Then, I spend as much time explaining to them as I did to the family, as to why it may or may not work.
Thank you…again…for letting us into your lives…for NOT saving face when it would be much easier to just share the good, the ups, the positives. It helps us ALL…parents or not, to know that we are not alone in helping these amazing, beautiful creations navigate this world.
~Wendy
That’s probably the politest way I’ve ever heard anyone ask someone to shut up.
Does she really meditate? Does it help her?