Last night, my dear friend Judith posted the following on her personal Facebook page. I asked her this morning if she would be willing to let me share it with you. I am so grateful that she said yes.

Please share it. With anyone and everyone who might listen. I”m begging. Because the judgement won’t stop until the compassion starts. And the compassion will never exist without understanding.

~

Take a close picture and you’ll notice something — each member of our family has a hand tightly placed on Jack. That’s how we live our lives — always with at least one of us keeping a grip on our dear boy.

As most of you know, Jack is on the severe end of the autism spectrum. He does not exhibit any sense of danger and often can compulsively bolt or wander away. He is fortunate to have a Project Lifesaver device, which allows law enforcement to track him when he wanders from our home. (And yes, we’ve had to call them.)

For those of you who have been to our home, you know it’s like Fort Knox. Special locks and alarms are on all of the doors and windows to keep him from escaping if we happen to turn away for a split second. When we moved in, the first thing Andy did was to visit our local Police Station to let them know that Jack could potentially wander. I went to all of our immediate neighbors, met them and then asked that if they ever saw him wandering down the road, to please grab him.

Jack requires 24/7 supervision. He is surrounded by a loving family who is “hands on” just as the picture indicates. But he has gotten away from us — more than once. For those who say that this sort of thing doesn’t happen to parents who are doing their job, with all due respect, please spend 24 hours with a family like mine. Your perspective will change dramatically — I guarantee it.

Less judgement. More education, support, awareness, treatment, acceptance, accommodations and understanding.

Please.

Thank you, Judith. And amen.

National Autism Society Big Red Safety Box

Ed note: This is part three in a three-part series. In other words, don’t panic, this is finally coming to an end. To read parts one and two, please click HERE and HERE.

Ed other note: As I said yesterday, please understand that the following is to the best of my recollection only. I had compiled some notes for the presentation, but veered off of them quite a bit, as I am wont to do, so I can only rely on my memory to piece together what I said and in what order I said it. I think it’s pretty accurate, but I’m also glad that no one’s life depends upon my recounting of that morning’s event.

~

We left off talking about goals. Talking about how one goes about setting goals within the context of RESPECT. About what that means, in a practical sense, when your client is two years old. About how to decide what is important.

I told them that, for me, it always starts and ends with a question …

Will this ultimately contribute to my daughter’s happiness – in the fullest and broadest sense of the word?

I explained that happiness to me begins with the ability to communicate her wants, needs, thoughts and feelings with others. I told them that it also means having the ability to participate in her community and to contribute to society to whatever degree she is able, and to reap the rewards and benefits of her contribution. It means having the full faith and support of enough people in her world to be able to reach her potential as a human being.

Above all, it means being celebrated and loved for everything that she is rather than feared, reviled, belittled, or systemically underestimated for what she is not. It means not having to live a life disguised as something that she has spent years being told that everyone else wants her to be.

I told them what I’ve learned from my adult autistic friends. From the ones who have spent lifetimes battling self-hatred and depression — the ones who have pulled themselves back from the brink of suicide. I told them that it breaks my heart to hear their stories, but so too, it informs everything that I do and everything that I say when I sit before them.

I told them that we — yes WE — all of us — plant the seeds of that self-hatred when we approach our kids as though they are broken, deficient, incomplete. When we send them the message from eighteen months or two or three that they need to change, or at the very least suppress, who they are in order to be acceptable to the world at large. When we start by setting goals designed to turn them into less autistic versions of themselves.

I told them that I see it as OUR responsibility – TOGETHER, from moment one, to tell these kids that they are already acceptable, already wonderful, already whole. That they have a disability, that they need support, that they need help, but that they are not WRONG.

I explained why I feel that way. Autism is pervasive, I said, — it’s right there in the description of what it is — a pervasive developmental disorder. It is the filter through which my daughter experiences her entire world. The way that she sees and smells and tastes and hears and FEELS everything. Where would I start, I asked, in making her someone she’s not?

So indistinguishability from her peers is not the goal, I said. But if we accept that it’s not, then what is? What it is for me, I told them, is to mitigate the challenges that come along with her wiring in order to allow her to live HER life to HER fullest potential. Her life – as her beautiful, fabulous, different, autistic self – not as someone the world mind find more palatable.

I needed to say something here, but I wasn’t sure how. When Dr. Henry had been speaking, before I had begun, she had talked about targeting behaviors. “Not just those that are obviously maladaptive though,” she had said, “things like flapping and spinning and other behaviors matter as well because they cause these kids to stand out.” (Ed note: That’s not an exact quote, but I am fairly certain that Dr. Henry would agree that it is a fair representation of her remarks.)

It’s not easy to take issue with a fellow presenter, particularly when you’re seated at the dais between her and her colleague. It’s even more difficult when they both have a lot of letters after their names. And it’s even more difficult when they invited you there in the first place. But they didn’t invite me there to keep my opinions to myself.

“I disagree,” I said, “that we need to work to discontinue behaviors that contain no inherent risk to our children other than identifying them as different. My kid does not blend,” I said, to a chuckle from the room. They were no longer chuckling when I added, “and that’s okay. That’s more than okay. It’s wonderful.”

I reminded them again that behavior is communication. I told them that, on that premise, if we aim to extinguish a behavior without first finding out what it communicates, we run our children into brick walls. There are behaviors, I explained, that are not okay. Hurting others is not okay. Hurting themselves is not okay. But, in order to effectively support a child, the first question has to be, What is he trying to tell us? And the second that necessarily follows is, What tools can I give him to make that known without hurting himself or anyone else?

Because that’s where happiness starts – with the ability to effectively and safely communicate.

I talked about joy. About how my girl expresses it. I told them how every fiber of her being takes its part in bringing joy to life. How it springs from her body — her hands and her shoulders — how she vibrates and bounces, how she runs and skips and squeals with delight. I told them that we all could take notes from her and said, My God, can you imagine how much better the world would be if we could all live in our joy so freely?

I told them that extinguishing that behavior (ed note: “happy running” and “squealing” are both behaviors that it’s been suggested that we should help Brooke work to suppress) because they don’t fit the mold of society’s expectation strikes me as terribly wrong-headed. I told them that’s why goals – each and every one of them – have to be subject to rigorous questioning before we apply them to our children. I told them that I ask each and every time we set out to determine where we’re headed …

Is this a goal that I would set in order to help my daughter to become that fullest version of herself or is it one that I would set simply because it will help her meet societal expectation?

There is no question, I said, that there is an overlap – an intersection on the Venn diagram where some of the skills that she will need in order to be happy will be the ones that will allow her to meet society’s expectation, because sometimes having the ability to meet society’s expectation is precisely what makes us happy. But we have a responsibility to our children to ask that question each and every time we decide what’s important to us, and what will be important to them.

Because otherwise, I explained, we’re setting up a paradigm in which our children are destined to fail. Or, perhaps worse, succeed at a desperately high cost to their sense of well-being.

Talk to adults on the spectrum, I implored them. Read their blogs. Seek their perspectives. We, all of us in this room, have a responsibility to the next generation to think through the consequences of our approach.

Indistinguishability cannot be the goal. The cost is simply too high.

There was more. I can’t remember it all. It was raw and emotional and far more pleading than I expected it to be. But I had to wrap it up. Time was, as it is now, running short. So I ended where I began.

You are powerful, I said. What you do matters. How you approach our kids matters. Because if you focus on what they can’t do or what you’re afraid they’ll never do and who they aren’t now and who you think they won’t ever be, you chip away at what’s possible. And what’s possible, especially at one and two and three years-old is ANYTHING.

I told them that I wanted to end with a story. To give them just a little window into the world of my daughter — a ten year-old girl who had almost no novel speech at the age at which they would have met her. Who still has the oral language of a kindergartener, but for whom the world is a wide open field – hers for the taking.

So I told them what had happened the morning before. The story I had already told to you. I told them this …

I went into Brooke’s room. I knew she was still asleep, but there’s no greater luxury than cuddling next to her in the morning, telling her that she doesn’t have to be up yet.

Soon, baby, but not yet.

I curled myself around her – her little sparrow body automatically finding and filling the space between us. I whispered into her ear, You don’t have to get up, baby. Soon, but not yet.

She turned her face to me. Eyes still closed. A smile. Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable. A smile.

I love you so much, baby, I said. So very, very much.

I ran a fingertip around that beautiful face. That beautiful, incredible, perfect face.

You are smart.

Chin to nose.

And funny.

Nose to hairline.

And generous.

Tracing the line of those perfect cheeks.

And you can do anything.

A kiss.

Anything.

And another.

She didn’t open her eyes.

But the smile never left.

Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable.

A smile as she said,

So can you.

Gratuitous photo of my beautiful daughter – because she’s what this is really about. 

~

Editor’s note: Please understand that the following is to the best of my recollection only. I had compiled some notes for the presentation, but veered off of them quite a bit, as I am wont to do, so I can only rely on my memory to piece together what I said and in what order I said it. I think it’s pretty accurate, but I’m also glad that no one’s life depends upon my recounting of that morning’s event.

Editor’s other note: This is part two in a series. For the back story, please click HERE.

~

And so I began in the place where our words met.

You are powerful.

You have an impact on these families, I told them. One that lingers long past the time that the kids age out and you move on. Your perspective matters. The way you approach these kids matters. The way that you teach the parents, by your example, to view their children’s challenges matters.

I told them the story of Brooke’s initial diagnosis. About the neuropsych with the white lab coat, the imposing accent and the Harvard degree hanging behind her head on her wall — the one who told us things that she simply couldn’t know because she wasn’t smart enough or brave enough or human enough to say the only thing that she had any right to say – “I don’t know.”

I told them how, as we were still absorbing the shock of the word autism, Luau had asked her questions that were as understandable as they were unanswerable — about what the diagnosis would mean for Brooke as she grew. “What would she be like at 10?” he had asked. “At 20? At 30?”

I told them how this woman, who had spent all of a couple of hours with our then three-year old daughter had said,“She will likely live a very solitary life. She will not be comfortable around people and will most likely live alone.”

Some of them gasped.

I explained that if we had been different parents, if we hadn’t walked out scratching our heads and saying, “That just doesn’t jive with the kid we know,” things might have been really, really different. Disastrously different. Had we been willing to accept the dramatically erroneous assumption that this woman had made based not on who our daughter was but on what she thought she knew about autism, we might well have accepted that there was no point in giving her tools to do something in which she, according to the doctor, not only had no interest in, but to which she was actually averse.

I told them that assigning a lack of motivation to a child based upon the absence of of innate ability is a dangerous game. I told them about how Katie, my twelve year-old daughter, who is neurotypical, loves all things science. How she is fascinated by how the physical world works. I presented a scenario. What if Katie were to walk into a doctoral level microbiology seminar? What if, upon walking into the room, she were to find the doctoral candidates embroiled in a hot debate about .. well, something that doctoral candidates in microbiology might be hotly embroiled in debating? Would she, a twelve year-old kid, be likely to jump into the fray and offer her opinion on the topic at hand? (Psst — no, she wouldn’t.) And when she didn’t, would it be fair to conclude that, since she hadn’t, she clearly has no interest in science?

I asked them to let that sink in. That, I said, is exactly the same as looking at one of our kids on a playground and, upon finding them apparently eschewing interaction with the other kids – you know, the kids who are moving in and out of complex and ever-changing webs of play at warp speed —  concluding that they have no interest in joining in. That might be the case. By no means am I asserting that it never is. But it will take a hell of a lot more investigation before it can become a safe conclusion.

As long as we were talking about assumptions, I told them, let’s talk about another one. One that you NEED to make. One that we all MUST make.

That our kids are taking it all in.

Every bit, every morsel, every word, every moment — logged and stored for further use. No matter how un- or dis- engaged they may appear, I said, please, please assume they’re listening. Assume they understand. Presume competence. It matters.

I told them the story of the ballet slippers. The story that breaks my heart to tell because it was before. Before I knew, before I understood, before I had the tools to help.

I told them how I’d gotten so frustrated. How I had let my dad’s words sink in – the words that he had spoken before. Before he knew. Before he understood. I told them about my inner dialogue that day. About how I’d said to my dad in my head, “Oh yeah, you think I’m too lenient with my girls? Well, watch this.” I told them how I squared her shoulders to me and chased her eyes and how I sent her to her room and told her that she had to stay there until she calmed herself down. I told them that I didn’t know. That I didn’t understand that I was demanding the impossible. I told them how much it hurt to share that story.

But I told them because I needed them to hear that three and a half  years – THREE AND A HALF YEARS – later, Brooke would tell me how she wanted her ballet slippers that day and how she cried and cried and cried and about the white water that she drank after she cried — and I would rack my brain to figure out that white water was milk and I told them because they needed to know, they needed to understand that she REMEMBERED EVERY SINGLE DETAIL about that day. That day when she didn’t have the tools to tell me, nor I the tools to understand, she was still taking it all in. I needed them to know that she was always — is always — taking it all in.

I needed them to know, I said, because I want them to remember it when they speak about our kids. To ask themselves questions, to keep themselves in check.

Do I speak about my kids in front of them? (If so, stop NOW.)

How do I talk about their challenges? In concert with their strengths?

How do I talk about their so-called maladaptive behaviors (more on this to come)? As something to be extinguished or as a method of communication that needs to be made safer or more effective?

How do I view this child? As a project or as a little human being with a fundamental right to my respect and dignity?

Do I speak about my kids in front of them? (If so, stop NOW.)

Yeah, one of those is there twice. 

I told them that just like the children, the parents they meet are taking it in too. Even the mom who nearly collapses into their arms when they show up at the door – the one who can barely keep it together, who hasn’t showered in three days and appears not to be paying attention - she’s listening too. She’s taking it in. YEARS later she will remember the way that they approached her kid. And her.

Do they choose to approach her child as a list of cant’s, a grouping of deficits, a set of limitations, an expected caricature of a label – or — as if they are exactly what they are – a unique, beautiful, potential-filled, dignity-worthy human being?

I told them how important it is not just to the child that their approach be the latter, but to the mom. The mom who watches and learns, the mom grasping for answers, for guidance, for hope. I told them how important it is that she sees them looking at her child with respect, with love, with care. I said it again — You are powerful. You are doing so much more than teaching these kids. You are laying the foundation for the next generation’s perspective on disability – on their own humanity.

I told them the story that I’d shared so many years ago when I guest-lectured to a neuroscience class at MIT. The one about the mom who was terrified about her son’s freakishly long fingers. About the doctor who looked at his hands and gasped. About how he said, “My God, this is incredible! I never thought I’d have the pleasure of seeing this is my lifetime! Your son has RJ Syndrome!”

I told them how the mother had asked what that meant. How the doctor had explained that the child was likely to be a musical prodigy – that musical talent was the most common trait of RJS. I told them how the mother had raced home to tell her husband the news. How they had filled their home with music, exposing their son to jazz and rock, country and classical. How years later, they had run into the doctor and his wife at their son’s debut concert at Carnegie Hall. How the mother had recognized him after all that time and said, “It’s all because of you!” How the doctor looked at her quizzically and she’d reminded him, “You were the one who diagnosed my son with RJ SYndrome!”

I told them how the doctor had chuckled. “I made that up,” he said. “I just didn’t want you to worry about his hands.”

I told them that perspective matters. That they can, and by extension, teach parents to, view our children’s challenges as insurmountable, OR they can say, “This child is different. And, with the right kind of support and help, that can be wonderful. He might just, with your encouragement and the right tools at his disposal, do incredible things.”

I told them that autism is a word. That it does not, and it can not, have the ability to prescribe the course of life.

I told them that parents of autistic toddlers are scared. That when they seek EI services, they are often doing so from a place of crisis. That they know that something isn’t ‘right’ but they don’t yet know what that means and heaven knows they haven’t got the foggiest idea of what to do about it. That they are living in a crucible of combustible emotions – fear, guilt, accusation, uncertainty, pride, fear. Yes, I said fear twice — it’s the gasoline on the raging fire.

I told them how desperate those parents are for solid ground, for anyone who has seen this movie before, who might have the tools to help. I told them again how much influence that gives them. It’s up to you, I said, not only to remember but to teach those parents that when you’ve met one person with autism, you’ve met one person with autism. That there are no cut and paste prognoses because there are no cut and paste people. You heard it again and again in the comments I read, I reminded them — no two of our kids are alike. Listen to us when we tell you about our children, I said. Watch them. Learn anew each and every time.

Make no assumptions about our children based on what you think you know about autism.

And then we talked about goals. About how one goes about setting goals within the context of what we’d already established was paramount — RESPECT. What does that mean, I asked, in a practical sense, when your client is two years old? What are they working toward? How do we decide together what’s important?

I told them that, for me, the answer to those questions is at the crux of it all.

To be continued ..

Click HERE to read part three.

Click to enlarge

~

Last week, I had the honor of presenting a workshop at the Massachusetts Early Intervention Consortium along with Drs. Kelley Henry and Dena Shade-Monuteaux. At 8:30 on Thursday morning, we sat facing a lecture hall filled with Early Intervention professionals there to learn more about the diagnostic process from both the clinician and family perspectives.

I felt a heavy weight of responsibility in doing this. These people are the starting point for so many families. The very first professionals that a mother sees when she’s terrified. When she doesn’t know where to turn. When she can’t yet imagine that there are gifts hidden in the tangle of her child’s challenges. The very first person who talks to a father who sees nothing but what his child isn’t yet doing.

As I tried to decide how to approach my talk, I thought of my friend John Robison’s words years ago, when I was shaking in my knickers at the prospect of guest-lecturing at MIT the next day. “What do you want them to know?” he had asked.

The question hit me hard. What do I want them to know? The people with the power to set the tone for a lifetime of support and intervention. What do I want them to know? The people who will lay the foundation for how families – and the children themselves – approach and perceive autism. What do I want them to know?

I want them to know everything I’ve learned. Every mistake I’ve made. Every moment of redemption. I want them to know that, really, above all else, it is about respect – that every single thing that they do HAS to come from a place of unmitigated and unassailable respect for the children they serve. That everything else will flow from there. But that  is where is has to start. With respect. Not for what we think these kids CAN be, but what and who they ARE. For their dignity, for their humanity, for their inherent wholeness. That’s what I want them to know. That they’re there to help, but not to fix. To guide, but not to change. That the goal is not to create sanitized, socially acceptable, non-autistic facsimiles of our children, but to help them to be the very best versions of themselves that they can be.

That’s what *I* wanted them to know.

But I’m just me. Just one voice. Just one perspective with just one kid on the spectrum.

And that’s not enough. It never can be. So I asked *you*.

And you told me.

Ultimately, 200 of you told me.

So I printed off as many of your comments as I thought I could manage to read and I brought them with me. And before I said anything else, I told them, “This what your families – the people you serve - want you to know.”

I warned them that there was a fair amount of repetition. And that it was purposeful. That they would see a couple of themes emerge pretty quickly. That I’d like them to listen for them.

And then I read.

*No two are the same. Also, this is your client but it is my baby, acknowledge and respect that.

*The Mama KNOWS her child. Listen to her.

*Behavior is a form of communication.

*Never underestimate [my child]. EVER.

*It’s your job. It’s our hearts and lives.

*Spend a little time getting to know my child. He’s not JUST another client. Learn what makes him tick.

*Little girls who don’t talk are not all “just shy”. If I’m brave enough to try to find answers please listen to my questions BEFORE giving platitudes!!!

*They are not all the same. Work with the child’s set of abilities not the textbook set.

*Try to make learning fun. Remember these are very young children. Figure out the child’s interests and use them to engage their interest. Give hugs and high fives to kids and parents.

*Test results are NOT a blueprint for what the child is like, and will always be like.

*Each child is different!

*Where my child is today does not dictate where he will be 5, 10, 15 years from now.

*You may think you know, but you have no idea. Truly. So, listen. Each child is different, and there is so very much to learn….

*That each child is different regardless of the diagnosis.

*Don’t tell me what he “can’t” or “won’t” do. Look at what he CAN do, and build on his strengths as much as focusing on deficits.

*Assume you don’t know, don’t get it, don’t understand — and be open to learning and changing your mind.

*That “norm-referenced” tests and evaluations only reveal what autism looks like on paper, and our kids are SOOOO much more than that. We’re okay with them not being cookie cutter kids at “Stepford” school.

*No two are the same. Just because you have worked with autistic children in the past doesn’t mean you’ve worked with mine. I am your best source of information on my child, not a book or a study you read.

*Some of your kids will remember you their entire lives, long, long after they “age out”.

*That in addition to working on our children’s’ deficits, we must also nurture the sparks of interest, the things they enjoy, are good at. That’s where the good stuff lives.

*Don’t assume anything.

*Every child is different !!!! And please go slow. I know you have done this dozens of times but we are new to this so please treat us (all of us . . . The whole family ) like the very delicate tearing at the seams almost broken fragile beings that we are !! Have compassion and patience and treat our child gently I know you’ve been in situations when you’ve had to be rough but please slow down!!

*They are not all alike and don’t respond to all teaching methods equally. Sometimes ABA doesn’t work. Try something else. Sometimes what worked yesterday doesn’t work today. Try something else.

*Just watch.

*That every single child is different and special in their own way, to embrace it and use it as a strength!

*Each child is different!!

*That my child isn’t a statistic, he is a unique individual who is just learning in a different way.

*Everyone is different, not everything works the way they ( professionals) were taught, and what works today won’t necessarily work tomorrow.

*Don’t tell me what’s not possible. Everything and anything IS possible, we are only limited by our expectations.

*Behavior is communication

*Never presume that any child will never _____? If a child wants to accomplish something they can. It may take them longer, be more difficult, may even take a different form than imagined, but never ever write them off and say the will never _____?

*Don’t pretend or believe that you know this child better than I do.

*Never, ever, ever have anything but the highest expectations.

*Different can be a great thing. I want my child to be the best Gavin he can be…by his definition. We work as a team to support him : )

*That no one knows the child better than his/her mother! Don’t discount what the mother reports!!

*Every kid is AWESOME and AMAZING and themselves. You are here to help and teach not to judge and change them or their families.

*Presume competence.

*You may be the only other adult I see all week. If I am not showered or my house isn’t clean, forgive me.

*Dealing with a non-verbal kid with autism is not the same as dealing with a non-verbal kid without autism (which you would think would be obvious). Yes , this still bugs me 18 years later.

*In a power struggle with a toddler, both parties will lose. If the child is melting down in sessions regularly, your approach isn’t working. Please do not speak about the child in front of the child, especially reporting problems at length. Meet the child where he/she is at and build on the child’s strengths and interests. Do not force the child to do things. Frame your reports to the parent as “we worked on…” and not “here is what your child did wrong.”

*Presume he understands everything you say… presume he is capable & competent.

*Please speak about my child as if he’s a human being and not a diagnosis.

*Trust me as the parent! They may know early childhood education theory, but I know my child. Listen to the parents, thoughtfully and purposefully.

*The kids you work with all have various challenges, but they all can tell if you like them or not.

*I wish that early intervention professionals were sensitive to the overwhelming demands that newly diagnosed parents face, it’s an unbelievably difficult time. I wish someone told me that it does get better!

*Every child you work with is someone’s entire world. He or she is not a number or a case to be managed; not a problem to be dealt with but, instead, a life with equal rights.

*Your job is to figure out how this child learns

*Working with children with special needs is different than being a parent of a child with special needs.

*That EI is not to cure a child, only to help them learn the skills they need to be happy and successful in today’s world. Also that EI is needed just as much for the parents as it is for the children, be sure to teach us too!

*That they are smarter, more loving and caring then they are given credit for!! And that they are children, this is their childhood…not everything needs to be all work and no fun!

*Where you may have years of experience, and feel as though you have seen it all, I am the expert on my child. I’ve been there for every single moment. We are on the same team. My intense advocacy is not an attempt to belittle your experience, it is a necessity to ensure my child can be the best version of himself possible.

*That the little person is someone’s very precious child, so please be gentle when reporting all the delays.

*My child is unique. Don’t do a cut and paste job with the treatment plan.

*That everything my son does is some kind of communication.

*Acceptance is hard for some of us. It is not a straight line, but a process, and a very bumpy road. Some of us have to accept this over and over, because we continue to creep back into denial where life feels safe, if only in that moment. If that’s where we are that day, be gentle with our broken souls, for we are mourning the loss of our preconceived notions of motherhood and trying desperately to adjust to the new normal of our difficult, but rewarding, lives with our amazing children.

*Especially early on, all we hear us everything our child can’t do. Parents would sure love some positivity as well.

*Forget everything they ever taught you… and go and learn fresh from an adult autistic..

*That I know my child better than they ever will. Please listen to the parents.

*They’re not broken.

*Respect the stim!

*We can’t and shouldn’t be therapists; our family needs downtime too.

*Teach the child, not the diagnoses. Celebrate the CANs, and work on the can’ts. Stop setting your expectations by what “another autistic child did last year”. THE LITTLE THINGS ARE BIG THINGS.

*Teaching communication skills are of paramount importance; speech is not.

*That not all behaviors are necessarily considered problematic or something that needs to “be fixed.” And, by all means, PLEASE take the time to seek out the many excellent Autistic adults that are blogging and have created FB pages linking to their blogs. These adults on the Spectrum, they really are the “experts,” and if you will lend them your ear, you’ll find they are a goldmine of insight and information.

*That it really is OK to call them autistic. That there are more ways to communicate than just speaking. That forcing eye contact can actually hurt them. To seek out autistic adults and learn from them.

*They will make a lifelong impact on the child & their family.

*That they are not dogs and do not need to be trained. My son doesn’t need to change himself, he just needs to learn how to navigate.

*Educate me. I am new at this and don’t understand what is going on. Please teach me but don’t speak down to me.

*You’ll get a lot further if you spend more time developing a relationship with the child before you start pushing the demands.

*What works for one child may not work for mine, so please listen to me when I say it’s not sticking and to try another way!

*To remember that the child they are discussing is my child, not just another client, and to have some compassion.

*You are in our world, teaching us all to make all of our lives easier and help them in any way, respect our limitations as well.

*They’re real kids with the same emotions and feelings you have, not rats in a maze looking for the cheese (regardless of what BF Skinner said). #ThereISaidIt

*The child knows more than you think he/she does, is more aware than you think he/she is, and is most likely soaking up everything… and will remember.

*And know that it is very very hard and even a little bit scary to put your child with ASD into someone else’s hands so please please treat them with the care and love you would want your own child to receive.

*Compassion means a LOT to us as parents, and so does celebrating the victories, no matter how “small.”

*Be human. The best EI professionals we had were warm, engaging, and undaunted. If they didn’t have an answer, they admitted it and sought help from others in their organization.

*That for every drop we know, there is an OCEAN we don’t – so keep an open mind. Really observe. Listen to parents’ observations. Don’t just look for confirmation of things you think you know and understand. Our understanding tomorrow may be vastly different from today.

*Families are dealing with conflicting levels of denial. Don’t push them to accept it – just show strategies that could make it better.

*Do not talk about a child as though she is not there or not listening — ever. She is. Trust me.

*Strengths are just as important as weaknesses. Sometimes more so. Help us find them.

*You are powerful. You might show us how to be loving and strong with our kids…. Seeing you challenge our kids with a loving heart, helps us do the same with confidence. When you light up when you see my boys, you light up my heart. The beginning is very rough, your consistency, professionalism, and love mean so much. We can never repay you for your work or belief in our kids, but we will pay it forward with other parents new to the spectrum. It’s a circle. When you empower the parents you create a mechanism for longterm growth and hope. Thank you.

And that is where I ended because it was precisely where I had planned to begin. By telling them that they are POWERFUL. That they make an impact that lingers long after our kids age out of early intervention and they move on to the next family. That their perspective matters. That what they say matters. That what they DO matters even more.

And then I told them why.

To be continued.

Click HERE to read part two.

I wasn’t planning to write today. I was taking the day off. I am taking the day off. From work, from writing, from, well, everything except my kids.

But then this happened.

Just now.

And I need this in my Diary.

I need to never, ever forget this moment.

And this is why I write.

~

I went into Brooke’s room. I knew she was still asleep, but there’s no greater luxury than cuddling next to her in the morning, telling her that she doesn’t have to be up yet.

Soon, baby, but not yet.

I curled myself around her – her little sparrow body automatically finding and filling the space between us. I whispered into her ear, You don’t have to get up, baby. Soon, but not yet.

She turned her face to me. Eyes still closed. A smile. Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable. A smile.

I love you so much, baby, I said. So very, very much.

I ran a fingertip around that beautiful face. That beautiful, incredible, perfect face.

You are smart.

Chin to nose.

And funny.

Nose to hairline.

And generous.

Tracing the line of those perfect cheeks.

And you can do anything.

A kiss.

Anything.

And another.

She didn’t open her eyes.

But the smile never left.

Ever so slight. Ever so serene. Unforced. No pretense. Unmistakable.

A smile as she said,

So can you.

Ed note: What follows is a rant. A vent, if you will. It is not, despite evidence to the contrary, a cry for help. Promise.

 *

She said the girl I was with the business degree probably wouldn’t recognize me.
I was gonna run the bank.
I was gonna run the math.
Now all I want to run is a bubble bath.
Back then you know I had this plan.
Before all of this reality set in.
Here comes life boy ready or not.
Hey I wanted it all and that’s what I got.

Kenny Chesney, Woman with you

*

This last year has gone by in a haze. I know I was here, but trying to pinpoint the events of a month, a week, heaven forbid a particular day? No. just no. I feel like I’ve been walking from crisis to crisis, conflict to conflict, dodging bullets, catching shrapnel, holding on for dear life. I ride on adrenaline and crash into fitful, terrifying sleep. Because sleep is the place where all the fear comes to life in vivid live-action, macabre tragic comedy. The place where I, half-conscious, can’t move, can’t speak, can’t DO ANYTHING to make it better. The place where everything sees itself to its worst possible conclusion and then … Good morning and good luck! And people can’t understand why I don’t like naps.

After our recent team meeting at Brooke’s school, I gathered my things in a hurry to get back to my office. In one of those moments that you remember years later, one of her teachers said, ever so casually, “I just don’t know how you switch gears like that.”

And that’s it, isn’t it? Constantly shifting gears, spinning in my phone booth, spinning, spinning, spinning, shifting, shifting, shifting — who am I today? Who do I need to be in this exact moment? What cocktail of roles can I mix to make this work? This high wire act of being and doing and creating and sustaining — who am I today? — wife, mother, advocate, writer, teacher, student, professional, politician, friend, agitator, mediator, daughter, sister, counselor, consultant, strategist, apologist, friend, warrior, connector, decider, planner, bread-winner, trail-blazer, walking credit card, life of the god damned party, don’t mess with me mama bear, disciplinarian, maker of limits, soother of egos, defender of honor, soft place to land. Who am I today?

I’m tired of feeling like the more I do the less I do well and the more I try to do less the more I let my children, my husband, my work, my friends – myself down. I’m tired of being too tired to be the mother I want to be – the mother they deserve to have. I’m tired of being so tired that I snap and snipe and find fault where it doesn’t have to be. I’m tired of my daughter saying with those earnest eyes that bore through my soul, “Mama, are you sure you’re ok?”

I’m tired of saying, “I’m okay, honey, it’s just been a rough day / week / month / couple of years.” I’m tired of educating. I’m tired of shifting. I’m tired of spinning. I’m tired of managing life from one crisis to the next. I’m tired of aching for sleep that I’m afraid will come.

I’m tired of being someone I don’t recognize. Someone so far from the woman I hope to raise my daughters to be.

I’m tired of trying to remember who I have to be today.

I’m just .. tired.

~

The following is dangerously unedited. Godspeed.

Prepping for today’s IEP meeting

The big one

The one where we plan for next year

Fifth grade

The very last year before …

*Cue Jaws Music*

… middle school

Placement

Support

Goals

No

Wait

Goals

Support

Placement

Better, yes?

Reading reports this morning

My stomach in knots

Words like

Deficits

Challenges

Criterion

Borderline

Severe

Anxious

Shut down

Unable

Below

Weak

Struggles

It’s easy to miss the other words

The ones she started with

Delightful

Curious

Personable

Endearing 

Charming

Funny

Progress

Capable

Yup, they’re right there too

Before the pages and pages and pages of what’s hard

They’re there

In black and white

On record

In the report

Written by the SLP who not only knows her — truly, really knows her — but clearly adores her

And better — better? — respects her

Those words are there

Delightful

Curious

Personable

Endearing 

Charming

Funny

Progress

Capable

And they are every bit as true and real and salient as the others

It is my job to remember

To remind

That for every deficit there’s a delight

For every challenge there’s progress

Forward

Forward

Forward

We’ll decide on goals

Then placement

Then support

Because that

That is the order

It’s my job to remember

To remind

That the overarching goal

The one from which all others derive

Is not uniformity

No

It’s not keeping up with a timeline that’s not hers

No

It’s being Brooke

Brooke – in all her …

Delightful 

Curious 

Personable 

Endearing

Charming 

Funny 

Capable

… glory

With the tools to be

Happy

Fulfilled

Successful by her own measure

Which IS success by any other

Yes

It’s my job to remember

To remind

That for every deficit there’s a delight

For every challenge there’s progress

For every weakness there’s strength

We’ll start there, shall we?

With the strengths

With all that my girl CAN do

I hope they’ve got time

It’s a long list

Then we can talk about support for the areas in which she struggles

And then Brooke

Brooke will talk

She will say whatever she wants us to hear

My money is on a team cheer

Any takers?

And cheer we will

Because we are HER team

Team Brooke

It is my job to remember

To remind

There is no Team Brooke without Brooke

To ensure that she’s there

In the room

Sowing the seeds of self-advocacy

Working toward the goals

That ultimately she will set

For now we’ll go with

Happy

Fulfilled

Successful by her own measure

Forward

Forward

Forward

For our …

Delightful

Curious

Personable

Endearing

Charming

Funny

Capable

… girl.

*

Showtime.

I swear I won’t keep talking about roller skating. I promise. But you’re going to have indulge just one more post on the topic. Here’s why.

The other day, a reader left a comment on Diary’s Facebook page in response to my post about a classmate’s surprise that Brooke was able to roller skate. This is what she wrote.

Honestly, it surprises me that Brooke IS good at roller skating. My son just doesn’t have the coordination and motor planning down for such a task. He even looks odd when he runs! I thought that motor planning type issues were common among those with autism.

I get this. Like, I totally get it. A few years ago, I would likely have written the same thing. But I wouldn’t anymore. And, if you don’t mind, I’d like to tell you why. Actually, even if you do mind I’d like to tell you why. I guess it’s just up to you whether or not you keep reading. I hope you do.

When my daughter was initially diagnosed (with Autistic Disorder aka Classic Autism), she was also handed a bunch of bonus diagnoses as well: Sensory Processing Disorder, Pervasive Anxiety Disorder, and some more vaguely worded but equally ominous things like Gross and Fine Motor Deficits and Motor Planning Challenges. Right.

At the time, they made perfect sense. She couldn’t hold a crayon no less use it to color or write. She froze like a deer in headlights on a playground. Had no idea what the heck to do with a swing. Balked at a slide. Didn’t go near anything that required her to climb or otherwise have a plan of attack. Motor Planning Challenges was a tidy catch-all to describe what we saw. But, looking back, I don’t think it was an accurate one for what was really going on.

Over time, it became obvious that Brooke’s reticence to play on these structures and her tendency to get ‘stuck’ mid-action when she was prodded to do so, were functions, not as much of a lack of physical or physeo-cognitive abilities, but of anxiety. Ed note: I made that second one up, so don’t go using it if you’re supposed to sound like you know what you’re talking about. 

She was scared shitless, didn’t know where to start, and panicked as soon as something unexpected happened. Unfortunately, on a playground, the unexpected is precisely what is supposed to happen. Because the unexpected is what’s ‘fun.’ Bridges wobble, climbing structures sway, other kids show up out of nowhere and suddenly you’re in the middle of an uncontrolled, unpredictable chaotic maelstrom. Which, is, um, fun.

Years ago, I wrote about how Brooke could not jump from a two-inch mat down to the floor. Could she jump? Yes. But did she trust the floor to be there when she did? Not so much.

Did she have some real issues? Absolutely. Because she hadn’t been “practicing” coloring like the other kids, her hands were weak, making it difficult to hold a crayon. An OT offered up exercises that were actually sort of fun – picking up pennies, squeezing water bottles (her favorite!), putting toothpicks into cheese. They helped. Now, not only can she hold a crayon (or a pencil or a pen), we can’t get her to stop drawing. (Nor would we ever, ever want to.)

Throwing and catching were not remotely natural activities for her. Watching her process what she needed to do long after she needed to do it (and the ball had since  gone sailing by) was tough. So we stopped throwing the ball. We sat on the floor and rolled it, as you would with a toddler. We backed up. We took our time. And when we did, it came together. Throwing and catching didn’t connect for her in a vacuum, but they made sense in the context of a slow, methodical evolution from rolling to bouncing to tossing. Now? She may not be the next all-star pitcher, but at ten she can indeed throw (and catch) a ball. For the record, that’s more than her Mama can boast.

For Brooke, many of her motor planning issues were really just flags, asking us to stop, examine and break down the tasks that we, as neurotypicals, believe to be intuitive, but may not be to her. To make them familiar by degree. Once that happened, her anxiety around them eased and the ‘planning’ challenges all but disappeared.

Okay, so that was part one.  Here comes part two — roller skating itself.  Ready for this? I would argue that not only does Brooke not roller skate well *despite* her autism, but the very reason that she can roller skate well is that she *because* of her autism. I know. Bear with me.

As much as wobbling still causes anxiety, (hence the training wheels on the bike that she told me she will happily remove “when I am a grown up”) Brooke loves to roll. I took all of the following pictures over the course of eighteen hours. I could have taken far more.

This is what my daughter does.

Every.

Single.

Day.

She lives for the feeling of the wheels beneath her, the breeze that SHE CREATES pulling her hair behind her, the humming of the wheels on the wood (or the rug or the pavement). She glides back and forth and back and forth and back and forth yes, back and forth along the hardwood floor from our bedroom to the hallway in her father’s old roller blades, twice the size of her feet, for as long as we’ll let her.

Every.

Single.

Day.

If we run out of time before bed, she says, “But wait! I have to do my skating!”

It’s her thing.

Call it a stim if you feel you must. It is the very definition of self-stimulatory activity, after all. It’s repetitive. It’s soothing. It’s exhilarating. It’s regulating. It’s centering. It’s where she finds joy and peace and calm.

So when she hit the roller rink the other day, in roller skates that actually fit her feet, she was ready to roll, literally. Was she anxious at first? Yup. Did she try to hold onto me? Yup. Did it take some cajoling to convince her that she could do it? Some. But did she rock it? Oh yes she did. And was she good at skating despite her autism or good at it because, as part of her autism, it’s something that she unwittingly “practices” for hours and hours and hours each week?

I’ll let you decide.

Diary’s Facebook status – yesterday

~

There are studies on what I’m about to write. Lots of them. There are scores of posts out there on the topic, undoubtedly far better written than this one. Certainly they are better referenced and include links to, ya know, sciency stuff — studies and the like.

I’ll do my best to include some of that later, but I’m not writing as a scientist, or a doctor, or even a journalist. I’m writing as a mom. A mom who has begun to understand that, in the case of my daughter, there’s a fatal flaw in the autism zeitgeist. And it’s been getting me, and I dare say a lot of parents, into trouble.

It took a while for me to recognize that there is often a significant disconnect between what I think I see and what Brooke is actually experiencing. I tend to refer to it as viewing her behavior from the outside in rather than empathizing with her experience from the inside out.

For example – if I can’t ‘reach’ Brooke – if she’s not apparently ‘responsive’ when I call her (in the way that I, based on a combination of my neurology and 42 years of social conditioning, assume that one would respond when called), when she doesn’t ‘react’ to outside stimuli (in a way that I, as a neurotypical person, recognize as a ‘reaction’), it might seem reasonable to conclude that she is unaware of what’s happening around her.

Not so much.

I can say with some confidence that in nearly every incidence of Brooke’s withdrawal, her ‘lack of recognizable reactions’, as it were, is based not on a lack of engagement, but on an overabundance of it. This is where it gets tricky. Bear with me though, cause it’s also where it gets really, really important.

I recently read Judy Endow’s post, “He Is In His Own World” … Is It True? and immediately recognized my girl in her words.

As an autistic I would like to encourage all the people who think and say autistics are in their own world to reconsider. Please know, that contrary to popular belief, autistics are not in their own world.

The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by the amount and intensity of sensory information it takes in.

In addition, I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.

I nodded so hard as I read those words, my head nearly flew off my neck. Before I’d even finished the post, I’d linked to it on Facebook with the words, “THIS. THIS is my kid.”

I’ve talked at length about the fact that Brooke has made it very, very clear that she does not lack emotional empathy. She has made it equally clear that she does she doesn’t lack environmental awareness, despite the arguable periodic evidence to the contrary. Rather, she experiences a dramatic surfeit of both. And often, hyper-focusing on one particular thing to the apparent exclusion of everything else or giving the appearance of tuning out entirely are the only life rafts that can save her from drowning in the roiling ocean of sensory overload.

To look at her in those moments, the ones in which she’s playing defense in a world that’s grown far too intense for her to process, it may very well appear that she’s not present or not engaged. Please note the italics; there’s good reason for them. Throughout her early childhood, I wrote about the moments in which I’d lost her to Brooke-land, in which she’d become unreachable, the times I thought that we were no longer connecting.

The things that I tried to do in my misguided attempts to bring her back to me in those moments — the times I went chasing her eyes as though I were on some valiant mission to save her from oblivion — they break my heart to remember now.

Because … THIS ..

I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.

THAT is my child.

I see it every day, now that I know where to look. I see her taking it all in, the searing emotion, the too big, too much, too bright, too bold, too loud — the raw, intense, jagged-edged noise of the world — with no hierarchy, no categorization, no filter — just noise, all at once from every angle. And I watch her body try to hold it all until the mere fifty-one pounds of her ten-year-old being simply can’t contain it anymore and it’s threatening, threatening, threatening to boil over and spill up and out, the burning liquid anxiety now scalding her skin, the toxic steam of fear choking her breath and taking her words and pushing her further and further to the limit until she simply has to find a way, any way, to say, ” No more.”

And in that moment, that moment when the input is boiling over and it’s just too much, trying to force interaction is tossing gasoline onto an already raging internal fire.

It’s giving her, no, it’s forcing upon her, the exact opposite of what she needs.

She is not unengaged with her world. She’s seeking refuge from being painfully over-engaged.

These realizations are hard. Facing them head on sucks. They come steeped in guilt and marinated in feelings of inadequacy. But, well, parenting is hard. Any and every kind of parenting. And parenting a child whose experience of the world is radically different from our own requires a whole different kind of work.

There are no instructions. There’s no manual. And a lot of what we think we know is not only useless, but destructive. Whether we realize it or not, we interpret our children’s behavior (and, if we believe that behavior is communication, then by extension we interpret what we believe they are trying to tell us) through the filter of our neurotypical bias. If we’re really going to effectively and respectfully parent kids who are not neurotypical, then it stands to reason that we’ve got to cut that out.

How? Well, I’d argue that a good place to start is recognizing that unresponsive may very well mean overly responsive and overwhelmed and that nonreactive may well mean reacting internally.

Because if there’s one thing that I’ve learned over time, it’s that it’s flat out wrong to assume that because I don’t relate to the way in which my child is interacting with her world, she’s not. Not only is the assumption wrong, it’s the opposite of right. The opposite of truth. Of her truth — that she is not just different, not just ‘not less’, but sometimes, often, she is more.

**

*

As promised, some links for further reading / viewing. Please feel free to add more in the comments.

Amanda Baggs In My Language

Judy Endow “He Is In His Own World” … Is It True?

Rachel Cohen-Rottenberg On The Matter Of Empathy

Nicole Nicholson Glass and Concrete

The Intense World Syndrome – An Alternate Hypothesis For Autism

*hurdling

*

So that was last night. Katie apparently missed the staff at the hospital and felt that it was time to say hi. She’s good like that. Doesn’t like to let too much time go by between visits.

Not to worry, the concussion is mild and, although she feels pretty awful, she is expected to make a full and speedy recovery. Hopefully she has just enough downtime for me to fashion a suit out of bubble wrap for her to wear the next time she leaves the house. Because as much as she seems to like these trips to the ER, I’ve kind of had my fill.

However, before Calamity Jane tangled with a hurdle, she was doing some pretty exciting stuff. Over the course of a couple of hours she had made her way to Paris. And Lyon. And Bordeaux. Well, sort of.

For her French class, she was asked to do a presentation on the weather. It had to include five different locales experiencing five different seasons. You caught that, right? Five seasons. (If you haven’t had your coffee yet, I’ll help you out – there are only four.) The last one was to be a season from her imagination.

The kids were given the option of presenting live in front of the class or creating a video. As you can see, little Miss chose door number two. Which is good, because now we get to see it. And, well, in typical Katie fashion, it’s not just your basic sixth grader standing nervously in front of a camera kinda video. It’s Katie. Being Katie. And, well, Katie being Katie is one of my favorite things in all the world.

I give you …

Madame Fromage with the weather ..

*