Very infrequently, Master assigns a blog topic to get his slave’s wheels turning in a focused direction; one of his choosing, and for my benefit. 

I find myself hesitant to really seek out the support I so desperately need when it comes to my mentally disabled, autistic child.  I get so far as to open a door just a crack, but won’t go through it, and that is the topic of this post.

I think there is a good deal of shame and guilt I feel when it comes to my child’s disabilities.  I have experienced a lot of negative reactions from regular folk, even, and especially from my family throughout the years. 

Family that includes a couple of teachers who looked down on me for homeschooling my children.  I became sort of a maverick when it came to raising my children, and I got comfortable with that.

Homeschooling seemed a gentle way to ease my children into the world.  It was especially beneficial for a special-needs child, for who knew that child better than me?  However, in isolating my child from the world, I did not realize I was also cutting myself off from a potential support system.

I didn’t think support was out there.  I had only experienced judgment from my peers.  I was being judged for my child’s behavior very early on.  Pulling away from those who would judge us seemed safer. 

I avoided the school system out of fear.  I feared my child would be ridiculed and feel the pain of humiliation from his peers.  I wanted none of that for him.  I wanted this safe haven, and that is what I strove to provide. 

I also avoided them because of guilt.  I must have done something to cause this disability.  I smoked pot while I was pregnant, before I knew I was pregnant, and that must have caused it.  Or, the vaccines.  Everyone knows that the vaccines are linked to autism.  If I had taken better care of myself and my child, this never would have happened. 

I think, though, that shame is the biggest roadblock I’ve had to face.  I fight the shame I feel for having an “abnormal” child.  I am ashamed when his behavior is out of place; ashamed for making excuses; ashamed I am so ashamed.  What sort of mother is ashamed of her own child?

I have grieved the loss of hope for normalcy for this child so much that I thought there was no more grieving to be done.  But I am continually surprised when we turn a developmental corner, only to be faced with a new reason to grieve.

No sleepovers for this child, no dates, no prom.  No college, no marriage, no grandchildren.  Not even a single friend to speak of.  No long talks about future plans.  Not much talk of any kind.  Constantly fighting against rigidity and sensory issues.  Battling fears of change and fears of looking “dumb”.  No independence.

Eventually, the school took over as I failed yet another year trying to teach second grade as this child was turning 13.  I gave up and got a diagnosis from a psychologist.  Then we entered the public school system, and I began the first steps towards reaching out.

As my child’s world began to broaden, many small doors began to open. 

I met moms who had children with similar disabilities, but never really got to know any of them.

“Oh, your son rides so well!” 

“Thank you.  Your son has improved so much since he first starting riding; that’s awesome!”

But that’s as far as I would go; up to the door, open it, but never go all the way through to…

“Would you like to meet for coffee sometime?  What’s your number?”

No.  I never go through.

But Master wants…

No,

Master insists that I go through some of these open doors.

I am not an island.

I cannot handle all of this on my own. 

I have too many questions.  I grieve.  I have fears.  I desperately need information. I need support.

And Master is right; I can give support as well. 

And I should. 

I remember meeting this one mom.  She had a son who was physically and mentally disabled.  He could not even hold himself up in a sitting position at age five.  He was tube-fed.  He had a trach.  He didn’t speak. 

We used to talk every week while our children had their lessons.  But from this mom I felt judged because my child was so much more capable than hers.  How could I possibly understand what she was going through?  All the hours of therapy, not to mention the expense.  And fighting with the school system for promised benefits about to be revoked.  Lawyers; loss of career and income in order to stay home and care for this child full time, plus the cost of a part-time caregiver; Talk about overwhelmed. 

No, she couldn’t relate to me and my child’s seemingly minor disabilities. 

Another door I didn’t go through.

So even within this group, the group of moms of children with disabilities, I felt judged.

I don’t think we moms of this group reach out very well to each other either.  I think we all struggle with our guilt and shame and figure it is our penance to keep our chins up and forge on alone. 

It seems everyone is so quick to pick up their child after activities and get the hell out of Dodge.  Those doors, it seems, are open for but a few moments. 

Well…

Master is right.

He is right to make me examine why it is that I avoid reaching out for support.  I will be able to look back at this piece and see exactly what keeps me in self-imposed isolation. 

Because it really isn’t serving me or my child well to keep all my struggles to myself.  I am not gaining a single thing carrying the burden alone.  And similarly, I am not able to help anyone else in my isolation.  And Master is again right, I would be very good at that.

Not to mention my child could perhaps gain a friend or two.