Here's one way to help.

I'm a mother of special needs kids.

There, I said it.

**Warning, this post is purely vulnerable and without filter.  I recognize on the re-read that a million holes could be poked through the reasoning.  I understand that it could easily offend any number of people.  That is not my intention.  Please do not take these words as anything more than my words, about my family.  It is my way of connecting my reality to my sense of guilt to my understanding that it's always better and worse in every direction.    

Mom of special needs kids is not my favorite way to frame up my life's work.

I usually talk about my children in terms of their exceptionalities.

It's probably semantics.  I already know.

But there is something about saying "special needs" that gets under my skin.  I don't mind it for other people.  But for me, I feel like a faker.  My kids have special "needs", but they are fine.  By fine, I mean, high functioning.  By high-functioning, I mean they are lucky.  By lucky, I mean blessed.  And then I just feel like a jerk for saying anything.

Let me try again.

Families, every day, deal with significant barriers.  Children with severe restrictions.  Children who have beautiful outlooks but are confined to their reality (chemo, wheelchairs, cognitive delays, debilitating biological disruptions).  Those families get to claim the title.

Our family deals in grey.

• We have autism, yes.  But the brand of Autism we have looks like a perfectly neuro-typical child with really strong behavioral issues (read: naughty...hysterical and brilliant and magical...but naughty).  
• We have Crohn's Disease, yes.  And it's a life-long, no cure, constant treatment brand of Crohn's  Disease, but it's also in remission and mostly not interfering with daily life brand of CD.  Yet, this child is choosing to be naughty as well.  Is it stress and anxiety from a chronic disease?  Is it PTSD from medical interventions that exceed what any child should experience?  Is it learned behavior from a lifetime of living in the shadow of autism?  Is it parenting? Is it hormones?  Is it a phase or a habit?  
• We have Apraxia of speech, yes, as well as a learning delay. Also, allergies and (at times) scary asthma.  But he's happy.  He's growing.  He's thriving.  He has yet to fully realize the impact of his exceptionalities.  He does a lot of medication every day for asthma and allergies.  He is in speech 5 days a week.  He has no idea this is not typical for 5 year old boys.  

We are not:

• under-resourced
• impoverished
• prematurely terminal
• without support systems
• enduring catastrophic loss
• living daily with severe limitation

So when I think about families with special needs kiddos,  I reserve that title for "other" families.  Not because we are better - oh, gosh no.  Not even close.  But rather because we might be fine and I just am too much of a wimp to know.  

However, every once in awhile, I hear someone describe me as a special needs mom.  And I wonder.  Am I?  Is this why I feel so overwhelmed?  Is this why I cry so often and feel so desperate to act?   Is this why I get so angry with people who seem oblivious to reality (or at least my reality)?

Sunday's are often the worst day of the week for us.  

It's been true for 15 years.

We manage to get up and ready 5 days of week for work and school.  But Sunday...getting up and ready for church feels like an act of torture.  I've never been able to understand why.  Today was no exception.  Every step was a battle.  We believe strongly in the practice of attending Sunday morning worship.  We believe it is God acting on us and within us.  We believe it is not about us but Him.  So we go.  But I'll tell ya, it's miserable.

Today at the end of the morning - after I sat through an hour of continual whispered correction to all my children: 

• "stop"
• "don't hit your brother"
• "no, it's not over"
• "shhh..."
• "you cannot draw pictures of bloody wolves killing each other"
• "people can see you doing that"
• "why are you poking him with a pencil?"

A women approached me and asked if I worked.  She is gracious and wonderful.  She was not implying that I didn't work as a mother.  She was asking if I had a job I got paid for.  I told her I was at home full time.  Her next question was the kicker.  "Could you help with Vacation Bible School this summer?"

Here's the deal, folks.  This is the point of this entire blog post.  I don't want to presume to be the voice of special needs families.  But I'm appointing myself spokesman for me and anyone else who needs an advocate.  If you know a mother of special needs kids...If you have ever wondered how you can help...here is step one: Do not ask her if she can volunteer with children.  Just don't do it.  Tell her she's doing a good job.  Compliment her kids.  Give her a high five.  But for goodness sakes alive...don't ask her to come work with kids!  

Alright, that's all I've got for today.

Go Team!