what we told them — part one

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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*.

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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.

12 thoughts on “what we told them — part one

  1. Jess, I’m an EI SLP in Birmingham and I see older kids in our outpatient clinic, and I wanted to tell you your posts are so inspiring and really give me an amazing perspective. I think we should be absolutely encouraging every child to be the best version of exactly who they are and I love getting to help parents along in that process. I’m printing this and the followup to take to my team meeting at work. We all need to be reminded of what we do and where our kids can go! Keep up the wonderful work!
    M.

  2. I love this. I sent it to all of Cymbie’s therapists, Private, and school. While it’s geared towards EI. I think much of it applies to ANYONE working with our kids, at any time. Thank you!

  3. Your line, “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.” is so true, and that’s why it’s so dangerous when we start differentiating between high and low functioning, as though one or the other has less inherent wholeness.

  4. Oh I am a tearful mess. Thank you Jess (as always) for being our voice. This post is just fabulous on every level. Your second paragraph (about the terrified mom and dad and what they are thinking) is so spot-on. So hard to wait for part 2…thank you so much for writing it.

  5. Thank you for doing what so many of us wish we could; giving our children a public voice. God bless you, Jess, and your beautiful family.

  6. Although I read your blog fairly regularly, I seem to come to them and spend more time on your blog posts when I really need it. Sometimes I don’t even realize I needed it. This is just what I needed to hear today. Especially as we begin the journey down the road, again. Another evaluation, another doctor. Hopefully, the diagnosis and then the help that my son needs and deserves.
    Thank you-Thank you-Thank you

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