I enjoyed Sandy's guest post. It managed to say what I've said for years all in one place...very clearly. I appreciated her words...and as usual experienced the thankfulness for hearing many of my thoughts from someone else I don't know very well...in essence repeating the you-are-not-alone refrain.
I came back and dwelled on her words of "don't give advice, unless asked for it"....this is SO true.
Many times I have been surprised by what hurts. Yes, there are some behaviors and words that hurt, and you can't be desperately surprised that they do...but then there are the moments that sneak up and knock you breathless...and the pain is shocking...
Three specific incidents come to mind. (If this was you, please don't be hurt, I just want to be transparent here.)
#1. When we had Elise, and were drowning in our shattering dreams and physical implications of her health....I had a loved one look me in the eyes and ask "Other than the worry, it's not that big of a deal to have a child with special needs. Is it?" well....um, no...but the worry was resulting in a stress that was all encompassing, and we were gasping for air. We had just been told that she had a heart murmur, and that it "may or may not correct itself"...but it was a maybe. So, at the time, she was just a baby that needed everything that any other baby needed...and needed nothing else just then. But it felt like I had been slapped. I ended up responding, "No. Other than the worry, it's just the same." Which was true...but that is the most binding factor of being a parent...worrying over your child, whether you are dealing in special needs or not....and the long term implications of a diagnosis can be a brutal worry. Her "practical" response that I am sure was supposed to encourage me in the normalcy of my life made me want to snatch her hair out by the roots...To her credit, she did apologise for it years later...
#2. Again, a few years later, it occurred to us that our will was making a lot of assumptions. Did those chosen to take our children still feel comfortable with the complication that Elise had all these health/behavior issues if something happen to us? Thankfully, when we approached them they responded positively, and we were reassured. But in the throws of these thoughts, someone commented that, I was lucky, because there is no way she could handle it... Again, the attempt was to reassure me, but the back-hand of that comment was that someone would refuse my baby, choose not to love her. That despite her miraculous self, Elise was "too much to handle" for others...it broke my heart.
#3. I am one step from nauseated whenever I realize that I am going to have to go to the grocery with Elise. When she was little, she would happily gnaw on a cereal box...NO one shopped happier than she....nowadays, there may be an emotional meltdown, growling, impulsive throwing or raking of items to the floor, running away...SO many options! More often than not, there is a "complication" to the shopping trip...she is getting better because I refuse to stop going out with her...I cannot give up my life over the educational process...and eventually, we'll get there...but the singularly most infuriating moment of my life as the mother of a child with special needs came after a particularly heinous shopping trip. We had no milk, toilet paper, or cereal...and all the substitutes had been exhausted...there was no more putting off the trip...and Elise spent the entire grocery trip doing a wailing scream/growl...she was exhausted after a day at school...by the time I got to the check out, I had a headache, my shoulder had the weird stress pinch going, and was I beginning to sweat...and a woman approached me with the "I'm going to help you whether you want to or not" look on her face. She walked up to me and told me that her best friend was using this great program with her child to make her behave appropriately...and rattled off the website. I would have resented her, but forgotten the situation if she hadn't followed up with, "You really have to have high expectations for your children's behavior or they will take advantage of you." I considered burning her at the stake for being a witch....and then dancing around while stomping the ashes... It was beyond not helpful. The sheer fact that I was IN the grocery store was evidence of my high expectations...and when someone has hit an all time low is NOT the time to offer behavior advice...concerning typical OR special kids...that's when you hug that mom. If you know them, feel free to bring it up on a day when their child has had a spectacularly good day...otherwise don't even go there. But a prayer on their behalf is NEVER misplaced!