The Unspoken Anxiety of Special Needs Parents

I had to leave Vince in an after school program for the first time since he started school in September.  He's actually been asking to do go to this program since he found out some of his classroom buddies take part in it, so I was hoping he'd have a good first go at it.  

I got a phone call within a half hour.  

*Sigh*

The entire way there, my mind was a mess of anxiety. Thankfully, I was already en route to pick him up when I got the phone call.  However, what if I'd still been at work?  What would I have done if I needed to leave early to get him?  I'm still new at the office, and while I know they're all understanding of a mother putting her kids first, there's only so much of that which they can be expected to tolerate before wondering why I don't have a "Plan B" in place.  

Problem is, there is no "Plan B" for a child like Vince.  Why, you ask?  Well, this program is a perfect example why.  

John is away so he's not able to pick Vince up.  Both sides of the family are either working or live too far away to help.  Ditto for friends.  Thus, my only recourse was the program, and I got a call 30 minutes in telling me that they were unable to accommodate him on account of his special needs.  

So like I said, luckily, I was already en route to pick him up.  However, what happens on Monday when John is still away?  I'll be working which leaves Vince with no where to go for 2 hours but the school program.  Problem is, the head of the program doesn't feel comfortable with him being there because she's not staffed to handle him (a situation for which I do not begrudge her).  Do I leave early - AGAIN?  Do I risk eroding confidence in my bosses that I do actually think my job is a priority or do I just force the school to take him anyway and make their lives (and Vincent's) absolutely miserable?  

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And then I worry about next year.  Inevitably, I always wonder about his future.  He's got an incredible teacher now, but she is his for kindergarten only.  
And given how far she's gone to learn about Vince's condition and work with him at his level, I know in my heart that she's a diamond among even the prettiest of gems.  There will be very few teachers willing to do what she has done for Vince - to see him as I see him.  
And that breaks my heart, because it takes a special teacher to reach a special kid.  With all his struggles with motivation and confidence, it's only going to get harder when the teacher doesn't have the capacity to do what Mrs. Sweeney has done.  

And then I travel further into the future and worry about how I'm going to be able to handle him as he gets stronger and more self-aware of his unique challenges.  He's recently started hitting himself - a characteristic trait of Autism.  When he's frustrated, he'll begin slapping his head over and over... almost like he's trying to jar his brain into doing what he wants it to do.  

And now I'm crying because I know that one day I'm not going to be there to stop his hands from reaching for his head, and even if I am, he's going to be strong enough to push me away.  Worse, he might even be self-aware enough to figure out how to extricate himself from my presence so he can self-harm away from perceived judgement.  

Unless you're the parent of a special needs kid, you really just don't "get" how all-encompassing this is.  Every time I get a phone call from another parent or the school, I instantly get a knot in my stomach that they're calling to complain about what a nuisance Vince is because they've become overwhelmed / disgusted / frustrated by his various challenges.  I brace myself when I do pick him up, because I know that no matter how good the day was, something went awry and needs to be addressed.  When I get home from work and ask how his day has been, I have to make sure I don't let my fear of what he's going to tell me creep into my intonation.  And finally, when I talk to folks who ask about how he's doing, I scramble to come up with the easiest way to either side-step the conversation or downplay the difficulty because I can barely soothe myself let alone the anxiety of other people.  

God, this is so hard.  And I don't even care that it's hard for me; I care that it's so hard for Vincent.  No child should struggle as hard as he does and still feel inferior that his best tries are not good enough.  ​And he's starting to feel that way.  I can tell he's starting to feel that way because he's beginning to verbalize it, which, ironically, is a huge accomplishment for him.  

​*Sigh*

I know that God's got a plan and will take care of Vince in the end, but I hate having to see him go through this, and I hate feeling like a failure because I am not smart enough to know how to help.  I feel angry that I've constantly got to consider putting Vince (and even Nate) into less than ideal situations so that I can keep all my priorities from shattering on the floor.

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It's a constant juggle, and it's felt VERY pressing as of late.  All throughout January, the boys and I were rotating illness.  I forced myself to go to work even though I should've stayed home because I knew I'd need to take time off for the boys and they needed it more than I did.  I also knew that Vince had an upcoming field trip that I needed to chaperone because - again - they don't have the staff to handle him, especially off-site.  

Which, I just realized, the stupid trip falls on the date of a meeting I'm supposed to be running. Ugh.  There wasn't a conflict before, but now there is because the meeting had to be moved on account of someone else.  

*Sigh*

Lord, I hand it to You.  I've only got two hands with which to juggle.  Send some angels to help keep these plates spinning, and please strengthen Vince's guardian angel to be a real light for him.  Please keep his teachers in Your sight and send the Spirit to give them a greater understanding of Your Love for Vince.  If only others could see him as You see him... oh what a blessing they'd know he is!