Acronyms and JACK

If you are a parent of a child with a disability, you probably participate in a number of on-line discussion groups, email lists, etc.  If so, then you probably have seen parents sign their emails with a list of their children’s diagnoses… often in the form of acronyms.  With some of these kids’ complex medical conditions and learning disabilities, it can look like alphabet soup in the signature!  In fact these many acronyms get to be so familiar – like our own little special needs language where vowels are rare but consonants abound… but I digress.

One parent recently shared a funny story…  On one of these lists, some time ago, there was a parent who had three children.  Two of her children had several dx (a.k.a. diagnoses) and one was what we call NT (a.k.a. neurotypical).  So her signatures looked something like this:

“Beth, proud mom of:

Simon – ADHD, CHD, DS, NLD, DD, HI

and Jordan – HFA, SI, SLD, IBD, OCD”

(Which, BTW translates to “Beth is an amazing mom of Simon who has Attention Deficit Hyperactivity Disorder,  Congenital Heart Disease, Downs Syndrome, Nonverbal Learning Disorder, Developmental Delay, and is Hearing Impaired and of Jordan, who has High Functioning Autism, Sensory Integration Dysfunction, Specific Learning Disability, Irritable Bowel Syndrome, and Obsessive Compulsive Disorder)

To take it even further, some parents even include the acronyms of the various therapies and assistive devises they use to help their child, but I won’t give an example here since that would just be waaaayyy too much fun.  So anyway, back to my story…

This mom of three had an NT son as well and so, one day, she included in her signature a fourth line that read “and Robert – JACK” 

JACK?  No one had ever heard of that one before.  Was this some new exotic disease?  The parents just had to ask her what this new diagnosis acronym was.

She responded that her NT son felt left out when he saw these signatures and wanted his name on the signature too.  So she gave him her own diagnosis acronym: J. A. C. K. = Just a cute kid!!!

You can imagine the conversation that ensued in that discussion group. 🙂

To all those with JACKs and with the whole alphabet soup in their signatures – Peace to you all!!!

Advice for Parents

I recently joined an on-line group called FoggyRock.   Their tag-line is “When autism is your mountain, you will never have to climb alone”.  What a great tag-line! (check out the link in the sidebar)

Within FoggyRock, I joined a group for people in my state, and saw a question posted.  Basically it was asking what one piece of advice would parents of children with Autism give to a parent for a child newly diagnosed.

WOW!  What a question.   What a really difficult question.  One piece?  Just one piece?  I thought long and hard about that one.  What could I offer?  What did I wish someone would have told me when we first started on this journey?  What advice has most helped me over the years?

And I found I couldn’t think of one thing that would be the most important thing for all people.  I figured each parent comes from their own unique place, and with so many differences between kids (and all of the inconsistencies within each kid), differences between families, differences between support structures available, and differences between diagnoses, there can not be one thing that will be most helpful for everyone.  But… maybe this person was asking for one thing because, like most of us, they felt overwhelmed with the diagnosis and wanted desperately to prioritize.

I get that.  I remember that.

So what would I offer?  Some of the gems in my treasure chest would include “allow yourself to grieve because this is a normal response and it will help you eventually move toward acceptance” and “get moving on intervention as early as you possibly can – don’t wait for a cure to be announced” and “accept offers to babysit because you need it” and “Valium can be your friend” 🙂 but when it comes down to it, there were really two things that I wanted most to tell parents and anyone who loves a person who has been diagnosed.  These two things are the most important and influential pieces of advice I wish someone had told me way back when.  They are validating, they are constructive, and they are, in my opinion, liberating.

Most important advice #1 –

Don’t sacrifice your entire life or your family’s life to the Autism beast.  You MUST take care of yourself – it is actually OK to take a break and do something that has nothing to do with Autism once in a while.  You also need to not let the beast make all your family’s decisions.  Make decisions in the context of the family (whether that is just you and your child or includes a spouse, other children, grandparents, etc.). You only have x number of resources for your family (money, food, time, car, energy, etc.) and you have to figure out how to budget that out across the entire family – so every person gets a reasonable amount of resources depending upon what they need and what you have to give and relative to what the others need. I see so many families sacrifice the marriage or sacrifice other kids so that they can throw all of their resources at fighting the Autism beast. And while they may make great progress against the beast, I am not sure (in some cases) it was worth what they sacrificed. That is not to say that we shouldn’t make sacrifices – we all have to make sacrifices, just that priorities need to be set in favor of the family, rather than just the child with the disability. 

There are so many approaches and therapies – I cannot try them all and some are cost-prohibitive to even try much less sustain. So I try to think of it along the lines of a resource budget – it helps me feel less guilty about diverting a resource to pay for my other child’s baseball league or my church fund raiser and helps us live a (slightly) more balanced life than we are tempted to live when we live with Autism.

Most important advice #2 –

Guilt – No one should let themselves feel guilty because they may have “done something wrong” in pregnancy or they think they followed poor advice or because they didn’t know something earlier, or they aren’t adopting the latest x therapy/drug/treatment, etc etc etc.  We can destroy our lives this way and it just isn’t healthy.  We are human.  Whatever your religious convictions (or not) we are not created (or randomly born, whatever) as perfect beings.  We’re just not.  We’re not mind-readers, we’re not infallible, and while some of us specialize in certain skills (like Drs or therapists) none of us can be all things that our child needs.  It is just impossible, so we need to not hold ourselves up to an impossible standard.  We just do the best we can in this crazy, confusing, inconsistent world.  So my advice is to cut yourself some slack and just take it day by day.  Do the best you can but don’t beat yourself up for not getting it right every time, every day. 

And – don’t feel guilty about feeling guilty once in a while, either.  You are human (remember that?) and this is normal, too.  Just do your best to not wallow in it.  Try again tomorrow and work with what you’ve got! 🙂

Peace to all out there!

Neurotypical Syndrome?

A different perspective…

The “Institute For the Study of the Neurologically Typical” is an outrageous website created by a gentleman who was diagnosed with Autism in his adulthood and was, in his own words, “outraged” at how he and others with the Autism diagnosis are portrayed in various literature and studies.  The site is a sarcastic (and some might say bitter) parody that turns the tables on “typical” folk to give us a different perspective.  It comes complete with theories, statistics, papers, and (I particularly enjoyed this one) an online Neurotypical Screening Test.  Check it out – and enjoy a laugh (perhaps at your own expense)!

http://isnt.autistics.org/