Light it up BLUE

Today is Autism Awareness day... so LIGHT it up BLUE.  

I failed.

I forgot, in the rush of getting kids out the door I didn't put any Blue on.  I didn't post on Facebook or Instagram.  

Being me, I have been thinking about why I forgot.  We have a child with a diagnosis of Autism Spectrum Disorder.  How can I just forget?  CP Awareness Day..  Another fail.  We just are not a family that is great about fundraising and selling our story to raise awareness.  The reason...  I think is guilt.

I feel so personally responsible for my children.  

When Julianne experiences a meltdown or can't handle a family meal I feel like a failure.  She still struggles with the bathroom and knowing which shoe goes on which foot.  It must have been something that I did or did not do as a parent.  Words from unknowing adults like "she just needs more discipline, or she would be fine if she were an only child" ring in my ears.  It makes shredding the cloak of parental guilt arduous.  

Our experience with Claudia is different but similar.  I find myself thinking if only I had been a little older before I had the girls.  Maybe if I had quit working sooner, or had not been working so hard.  Then the here and now gets you too.  Our house is not accessible enough, she doesn't have enough therapy, her school is not good enough, we don't have her involved in enough extracurricular activities..and on and on.  

Having two kids with significant special needs is a huge blow.  No matter what cute nuance you tell yourself to get by.. the reality is this.  As a parent with children who have special needs you are faced with extra doctor appointments, uncovered medical expenses, hours on the phone being a medical case manager, IFSP meetings that turn into IEP meetings, daily personal care, daily medical management, advocating for your children's legal rights, and just plain trying to keep it all together to have some semblance of a family.  Is it always fun?   ..absolutely not.

So excuse me, when some days I don't feel like celebrating or spreading awareness because I'm just hanging on.