Tuesday, May 10, 2016

Outlier: The Data Point I'd Like Thrown Out

Next month, Julia turns nine.   

And besides being an accurate measurement of the amount of time Julia has been breathing oxygen on this planet, what it means for Julia to turn nine and what it means for a typically developing child to turn nine have absolutely nothing else in common.

Julia Anne, 8 years 11 months

I don't even know what it means for the majority of the world to be nine.
I had to look it up. 

And according to webmd, here are some things to know about typically developing nine year old humans:
  • They grow about 2.5 in. and gain about 7 lb in a year.
  • They can read and understand longer sentences up to 12 words.
  • They can add and subtract 2-digit numbers, understand fractions, and are learning how to borrow and carry values.
  • They like organization and planning, such as making plans ahead of time with friends.
  • They think independently. Most children are improving their decision-making skills.
  • They can accomplish increasingly more complex tasks and projects in school, such as book reports.
  • They recognize basic social norms and appropriate behavior.
  • They can control their anger most of the time.
  • They have caring, solid friendships.
  • They have overcome most fears that were common in earlier childhood. But they often start having more anxiety from common stressful situations, such as school performance.
  • They are curious about relationships between boys and girls. Few will admit to this interest-most will insist that they are horrified by the opposite sex.
That is quite an impressive list! Go typical nine year old's!

But it struck me as I read through this list several times that the least helpful and most misleading way I could describe Julia to someone who didn't already know her would be to start by saying she is nine years old. I would have to walk back and correct every single thing that person would be assuming about Julia based on their knowledge of a typical nine year old.

And this isn't new for us. This didn't just happen with turning 9.  Turning 8 was the same way - so was 7, 6, 5, 4, 3, 2 and 1. In fact, it was at Julia's six month check-up after answering "NO" to every single item on the developmental survey that I realized Julia 's path had already begun to diverge from her same age peers.  

I never did fill out another one of those surveys. If I was answering "no" at six months, what would I be answering at nine years?  "No x 10,000?" 

The older Julia gets the larger the divergence and therefore the less meaningful chronological age is to us. Honestly it means nothing. It is an outlier, it is irrelevant to understanding her, and I for one would vote for it to be thrown out.  

Let me be clear, I do not sit around thinking about this in my spare time. I do not care how Julia measures up to other nine year old kids. I do not care how she measures up to other two year old kids. I love her exactly the way she is -  so I don't like thinking about these age comparison issues because it forces me to measure her by what she isn't doing and that has never been our approach to parenting her.

 No, this isn't a topic I want to be thinking about. It only comes up when programs we have her participating in tell us something has to change because of her age. Just age. Nothing else. Period. That's when it becomes an issue I have to think about. That's when I suddenly have to look at my child and compare her to other 9 year old's. It's not a comparison I want to make. I want to talk about what she can do, what she is doing, where she is developing and thriving. Trust me,  I do not want to be spending my time building a case for why programs need to make an exception for Julia based on age.

But this is where we are. Again.

Every June, regardless of what else is going on with her - other people tell us her age is the thing that matters to them - and therefore a change must occur.  I get that for typically developing kids this might work - because chronological age accurately represents an entire data set of similarities these children share. But that's not the case for Julia - choosing to categorize her based on age not only seems irrelevant, it seems random, because none of her other data points match being nine. 

So if we are going to make a decision based on one singular data point (which is not how data is used effectively, but whatever...) - why not look at all of the data points we have to choose from for Julia? 

Here you go, here is 9 year old Julia in data points:

Size:
  • Julia is the weight of an average six year old (thank you cannabis oil for that).
  • Julia is the height of an average five year old.
  • Julia has the head circumference of an average 14 month old.
At her most recent neuropsych evaluation,
  • Julia's gross motor was that of an average 14 month old.
  • Julia's fine motor was that of an 5 month old.
  • Julia's receptive language was that of an average 9 month old.
  • Julia's expressive language was that of an average 3 month old.
  • Julia's overall cognitive level was that of an average 6 month old.
  • Julia's broad independence level was that of an average 11 month old.
Diagnostically
  • Julia has a chromosome abnormality.
  • Julia has epilepsy.
  • Julia is legally blind. 
  • Julia has global developmental delays.

So where does Julia belong? 
I have no idea. Clearly these data points are all over the charts. 

But the one thing I DO know is that I would never pick just one of these data points on the list to make a decision about her. 

Determining where a child like Julia belongs requires thoughtfulness and consideration that goes far beyond all of the data points we have available to us, let alone just one. 

We have to consider what Julia CAN do beyond what a battery of tests says about her.  Where would she have the most likely chance of fitting in given her unique way of interacting? Where will she be safe? What is best for Julia?

No single data point can answer those questions  and honestly, no amount of data can capture who someone really is.

I have to confess this is one of the most frustrating things I have experienced as the mom to a child with special needs - this tethering to a data point that is meaningless to us. The structuring of programs around chronological age which is irrelevant in our world. I know that's how the typical world functions - but Julia isn't typical. These structures were created based on what typical kids are doing at a certain age - she isn't a typical kid. She isn't doing what they are doing and yet, that age category is what people running programs use to tell us where she belongs. 

Nothing makes me feel more misunderstood than this issue - especially when it happens with staff in a "special needs" program.

Right now in our home state of Colorado, there are programs Julia would greatly benefit from based on where she is developmentally, but she cannot attend these programs because she is too old.  When she was the "right" age for these programs she could not benefit from them because of where she was developmentally. How is this a helpful way to structure special needs programs?

 How is it helpful to set up programs for kids with special needs and then hold them to a categorization that doesn't take in to account their special needs?  How is it helpful to set up a program for kids with special needs and then tell their parents "We can't make exceptions for you?" Isn't the whole program an exception? Our whole life with Julia is an exception. Please show me one area in which exceptions aren't the norm for us. Isn't the purpose of a program for kids with special needs to help us with those exceptions? To think outside the box with us about what might be best for our child given how different she is from her same age peers? 

Instead of helping us think and work outside of the box, it often feels like more boxes are just piling up inside the original box.


And yet, my child is a freaking starburst. She doesn't fit inside a box.



She is fantastically complicated (that's not bragging, that the definition of a child with special needs). She requires flexibility and creativity and resources. If you don't want to give her those things fine, we will do it on our own - just don't claim to be a program that is meant for her then. You are essentially a typical program following typical rules, leaving us in the same place we would be in without you. 

And to anyone who might be formulating a response to me suggesting I am selling Julia short by pointing out how she isn't like a nine year old, let me stop you right there. I am the last person to sell Julia short - I am in awe of this child and what she can do. My singular focus as her mom is to give her the best life possible to continue to grow into the person God made her to be. Which means I have to be realistic about what she can and cannot do right now. 

What IS selling her short is making determinations about her based on one piece of data. 

It is selling her short to think she is so simple and unaware as to not be impacted by being placed with kids whom she has nothing in common with. It is selling her short to dismiss the benefits to her that can come from making exceptions for her. That, my friends, is selling her short. And it is selling us as her parents short as well.  We will not be talked out of doing what we feel is best for our child. ever.

Okay, I think I am done.

If you  made it to the end of this rant - thank you. If you are a fellow special needs parent who feels the same way I do, my heart goes out to you, you are not alone. If you are fellow special needs parent who doesn't feel the same way as I do, that is great! I'm happy this is one issue you aren't dealing with - our journeys definitely aren't all the same.  If you are a provider working with kids with special needs and you took the time to think about what I wrote, thank you so much! It means a lot to have my perspective as a parent considered (even if you don't agree with it) rather than dismissed or instantly argued with. 

Bottom line, in my experience with Julia, age is neither a helpful nor accurate way to categorize, segregate, or make decisions about her. 

I believe we can do more good for all kids IF we are willing to see them as more than data points.







12 comments:

  1. Bravo, once again, Laurie! Well stated. Julia IS Julia, the light of the world that she is. Perfect as she is. I just love her (and her whole family!)

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  2. I couldn't have said it better myself. I love reading what you write because you express perfectly what this journey is like. I'll add one thing to what you wrote. As you know, Drew does not operate anywhere near his chronological age...so I have to mark no on all those checklists too. At least until now. As he is approaching puberty, he is physically changing exactly like typical pre adolescents do. I don't know if it will be the same with Julia, but for us, there's one thing that gets a yes check....for better or for worse. -Michelle

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    1. Thank you Michelle - and that's a good point - I need to stay aware that those physical changes could start at any time. Love you guys! <3

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  3. I read this with interest as my son is way of the scale in every which way. No programs here for kids like him and we had to start a little school (five kids) so he could have somewhere to go. It's crazy how age is taken into account. I mean, really!!!!

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    1. Hi! How did you start the school? I would love to hear more. We are thinking about something like that here. Thank you!!!

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  4. Fantastically complicated - that is Julia and the one in 5/6.

    Julia could be the one to deprogram us all.

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  5. My daughter is 14, weighs 35ish lbs, and wears a size 6 or 7 in clothes... She ranks around 3-6 months in most areas where development is evaluated. She spent the first 13 years of her life in an awful orphanage. When we talked to the school district I wanted to put her in elementary school, but junior high it is. They are doing their best with her, but dang that bureaucracy makes it tough :-P

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  6. https://afu.ac.ae/ar about-afu/overview

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