You are not your child’s best advocate

You are not your child’s best advocate (probably)

It’s the first thing you start hearing when you find out that you are a special needs parent…

The three axes of special needs advocacy - passion, domain expertise, and child knowledge
The three axes of special needs advocacy – passion, domain expertise, and child knowledge

You are your child’s best advocate

It sounds good. But, it sure doesn’t feel true.

Yes, you care more about your child than anyone else.

But, you aren’t an expert in their condition.

And, if you are like me, you didn’t even know that you had a special needs kid until things got really serious.

Ignorance isn’t bliss

It all started with some delayed speech…. our son, Geoffrey, had his 2 year check up with our physician. We had noted that he wasn’t talking much yet. We got the standard questions “does he have any 5 word sentences”… Yep… (actually, “Nope”… it was echolalia but we didn’t know the difference).

6 months later….

We’re at our daughter’s annual check up… and Geoffrey still isn’t talking really. But, you know, “boys are slow” and all that. Our doctor is concerned enough to request an evaluation (we think for speech therapy).

The paperwork begins.

3 months later….

Still no progress talking. We go into an “assessment” that we THINK (or rationalize) is for speech therapy.

3 hours later, we stagger out with an autism diagnosis.

I wasn’t my child’s best advocate

“Unknown unknowns”. If you don’t know what questions to ask. If you don’t know what you are looking at. If you don’t know what to ask for… you pretty much suck at being an advocate.

You may know something is wrong, but that is not the same as knowing what to do.

The Con is On

Very quickly, you are fire-hosed with “services” and things to do. You start going to meetings with well-meaning, sometimes amazing, sometimes jaded, and sometimes just barely there social workers, doctors, therapists, and teachers…. the one thing they all tell you is;

You are your child’s best advocate

Right.

Just for reference, we didn’t even suspect our son had autism until we were told.

I’ve come to suspect that making the parent the “child’s best advocate” is a way for schools, health-care, and other service providers to dodge their responsibilities.

Because, while I may be my child’s MOST PASSIONATE advocate, I’m certainly not his BEST advocate.

Because, there is a lot more to advocacy than passion.

Three Axes of Advocacy

As I see it, there are three main axes of advocacy for special needs kids. Passion (my job… thought I’m always happy to see it in others), Domain Expertise (knowledge of my kid’s condition, the diagnosis and treatment options), and Child Knowledge (actually looking at what is going on with knowledge of what you are looking at).

“Services” not Treatment

Have you stopped to wonder why our special needs kids get lots and lots of “services” but not any “treatment”?

I suspect that this is a bit of inadvertent honesty in the system…

….humbleness instead of hubris.

In many cases, no one really knows what is going on …. and no one really knows what to do.

Don’t get me wrong.

There are a lot of things that do kinda-sorta-help.

But….

It does seem that we get a lot of “services” thrown at our kids.

Very hard.

Very fast.

But, we don’t get a lot of ongoing assessment and diagnosis of what is actually going on.

(why in the world am I, me, the ignorant parent routinely asked to tell these “experts” what the goals should be for my child?)

(… my goal is simple and hasn’t changed from day one… to have Geoffrey be happy, successful, and ideally move out of our house on schedule at 18…. )

(… can we put that in our IEP?)

But I digress.

I get it. It takes about 3 hours to determine that my son has autism.

But, if “every autistic kid is different” (true of all kids…. and I bet you are tired of that too)…

… shouldn’t we be spending a BIT more time trying to figure out what specifically is going on?

Child Knowledge Gap

Imagine we didn’t have convenient terms like “Autism Spectrum Disorder” or “ADHD” or “Oppositional Defiance Disorder” or … or .. or… and we just started really, really looking very hard at what very specifically we are seeing going on with our kids. (I give full credit to the books “An Early Start for Your Child with Autism” and “Ido in Autismland” for this insight).

  • What are we seeing.
  • What could possibly be going on?
  • Am I interpreting what I am seeing the right way or are there other possibilities?

To me, these “diagnoses” seem to allow our “experts” to turn off their brains and get on with treatments (I mean services),

But, I’ve come to the conclusion that we are in Oliver Sachs country.

(Oliver Sachs wrote a number of books about a wide range of neurological conditions with strange symptoms)

… a land where there are a vast range of possible conditions that our kids have…

… and they can have multiple conditions in multiple combinations…

… conditions that can mask problems…

… conditions that make it hard to determine what the problem is…

(combined with the challenges of sometimes working with children who are young, changing, and don’t have communication tools to help you with your research project)

Over the past several months, we’ve come to the conclusion that our son, Geoffrey, seems to have no real “receptive” communication issues, but mostly “expressive” communications challenges combined with some pretty serious “engagement” problems.

In other words, he understands what you say (pretty much for a 4 and a half year old), but he has a lot of difficulty answering or staying focused on the matter at hand.

The problem with this comes that a lot of his speech and behavioral therapy (and school goals as well) are designed around “trials”.

Little experiments.

Ask question, get answer.

If you get enough answers correct vs. incorrect, skill is answered, move on to next skill.

It is a straightforward methodology.

Except.

What if the reason you are getting the answer “wrong” is that you lose engagement with the trial?

What if the reason you are getting the answer “wrong” is that you can’t find the way to express the answer (even if you know the answer)?

If you look at my son’s data, what you see is…..

… pretty crummy.

Very inconsistent results.

But.

What the metrics don’t capture well is that Geoffrey isn’t getting the answer wrong.

He just is quitting the “trial” (going off into Geoffreyland)…

He actually “knows” the answer.

But the data doesn’t show it (at least directly).

Nice story, Steve, but why are you going on (and on) about this?

Are we really looking?

So, our insurer, Kaiser, did a 3 hour assessment that determined that Geoffrey has autism. The school district did another 3 hour assessment to determine that Geoffrey has autism. GGRC (Golden Gate Resource Center) did another 30 minute on-site assessment combined with a review of the other reports to determine that Geoffrey has autism.

Kaiser has authorized 15 hours of ABA (applied behavior analysis – behavioral therapy) and 1 hour of speech therapy a week.

The school district has authorized special day class (SDC) for Geoffrey with some speech therapy.

GGRC gives us a bit of support.

But, after that, there has been little systematic effort to determine the specific nature of Geoffrey’s disability.

And, many of the “services” implicitly presume problems with receptive communication.

And, the standard psychological “tests” presume neurotypical brains… one of our favorites being a question about whether your child “plays catch” as a measure for gross motor skills… Geoffrey has autism…. he doesn’t play catch because of a social disability, not because of a gross motor skills problem!

BUT, if we don’t understand the nature of his disability /neurological difference, we can’t give him the support he needs.

If we don’t understand the nature of his disability, we can’t properly parse the data we are seeing.

If we don’t understand the nature of his disability, we can’t design trials / therapies / services that actually provide useful support.

And, no matter how generous these services seem, if they are treating the wrong problem, collecting non-meaningful data, from invalid tools….

… we’re not actually helping.

Domain Expertise

If you can’t ask the right questions, you can’t get good answers.

For all the passion that we have as parents, our crash-course dives into the world of our child’s disability is no substitute for real training.

Yep, I’ve read a number of books (and have a number that I’m sure I’ll read… someday).

Yep, I’ve read a ton on the Internet (way more than useful).

Nope, that is no substitute for real training in the field.

Nope, that is no substitute for years of experience.

Nope, that is no substitute for keeping up to date with the latest research and therapies.

Ending the “Best Advocate” Lie

I’m not my special needs child’s Best Advocate… or, he’s in trouble if I am.

I need my subject matter experts to help… and not play coy or 20 questions with me.

You don’t get to dodge your responsibility to treat, educate, our support my son just because I don’t know the right questions to ask or the right way to ask the questions or know what the right treatments are (if anyone does).

It’s OK to admit you don’t know the answers. This is often tricky stuff. If you’re honest with us, we’ll (try) not to put too many expectations on you.

As parents we likely bring the most passion and hopefully a lot of knowledge (or at least access to) our kids behaviors and conditions.

You bring expertise and the ability to determine the significance of what we (and you) are seeing.

It takes all of us together to be the best advocates for each and every special needs child.

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