It feels like ages ago…

This past weekend, I got a vacation.  My band played at a Sci-fi convention a few hours away.  I drove down Friday morning and turned off my cellphone when I got there.  I indulged in food, and sleep and music and intellectual discussion…and I found me.

Letting go was easier than I anticipated.  There were moments, in the middle of the night when I couldn’t fall asleep quickly – and I realized it was because I couldn’t hear the boy breathing.  It took super-human trust in the boys caregivers for the weekend.  Breathing in was easy, it was the breathing out that was tripping me up.  For the first time in my life, I was able to put myself to sleep, quickly and deeply, and I slept 6 hours each night – a full sleep cycle for me.  Oh, and those knots on my back, the ones that have been there since I was a child? – they are gone.  There were some feelings of not wanting to come back home.  After all, the first taste of true freedom in a lifetime can be very overwhelming.

I had daily conversations with the boy the week before I left.  I told him that he was growing up, and grown up boys like having their own space, and so do Mommies.  Mommy needed a vacation to have fun and be by herself.  He told me to go, every day.  And when I told him goodbye Friday morning, he was caring but far from emotional.  The only trouble they had is when his computer keyboard died sometime early Sunday morning, and I had forgotten to replace the “emergency spare”.  In hindsight, I can see what to do in the future to prevent it from becoming a crisis again.

He’s changed a bit too.  He answers questions more often, with a definite Yes or No.  He says “Thank you” more often unprompted.  He says “I love you!” spontaneously.  He’s processing more before acting or speaking.  He’s spontaneously answering “I am fine” when asked “How are you”.  He’s preferring to keep his clothes on and has taken an interest in his appearance.  He was doing some of this to a degree last week also – but you know how you get blind to things when you see them all the time.  And he grew another 2 inches.  I know he did.

Caregiver burn-out is a serious issue.  Especially when you are a single parent caregiver.  You tell yourself you have to do it all, there is no one else, so you push yourself – beyond what anyone else sees.  You don’t understand why no one is jumping in to help – and at the same time you are embarrassed to admit you need help.  Guilt and shame, you take everything personally – and then your body starts giving out on you.  Don’t let it get that bad, please.  I know you CAN keep yourself together indefinitely,  but you don’t have to.  There’s a delicious martyrdom in believing that only you can care for your child in the best ways.  But to move past this, I had to think about my boy instead of me.  There’s a fine line between special needs parent and smothering parent.  You do it for them this one time because you don’t have 10 minutes to wait for him to get his shirt on.  But you have to.  You MUST start putting 10 minutes extra in the schedule and letting him have that 10 minutes.  He will do it wrong.  Many times.  He will grab it by the sleeve and swing it over his head. (gross motor development)  He will tie the sleeves around his neck and make a cape. (Imaginative Play)  He will cover his head with it and sit quietly.  (Controlling environment and sensory input and self-calming).  He needs that 10 minutes to put the shirt on.

I came to peace with the idea that he will be going to live in some sort of residential setting before he is 18.  In the near future, it will be in the form of Short term respite facilities.  It’s not giving up on him.  It’s giving him his own life.   I’ve parented the best I can, but it’s time.  For both his and my sake.


In the end, it’s all about quality of life.  That’s how we have to measure it.  Does this improve or impede my happiness.  He deserves it.  You deserve it.  I deserve it.

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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

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