I’ve heard that his entire life. It was a difficult birth that resulted in him in the NICU. At the time all anyone knew or would tell us was that he couldn’t breathe and have any other kind of stimulation at the same time, or he’d stop breathing. I had to leave the hospital without my baby. What I heard from “seasoned” moms was “It could be worse.”. They were right. He could have died at birth. He could have had cerebral palsy. He could have had trisomy 18 and not lived at all. It could have been. But at that moment, for me, it was bad enough. I was home without my new baby. When I was at the hospital I wasn’t allowed to hold him, or rock him, or kiss him. It could have been worse, but it was bad enough.
His hospital stay only lasted 5 days. His breathing resolved itself, which I found out from doing research later was entirely expected. He didn’t have a life threatening condition. What he had going on was relatively common, transient tachypnea of the newborn, TTN. We were just being treated by hospital staff as if they owned our child. I still have issues with that, but that’s for another day.
His challenging days didn’t get better. As he grew he became distant and aggressive. He was brilliant and his gross motor skills were far advanced for his age, which meant he hurt himself a lot. Being able to climb anything around you but not being old enough to have the judgement or fear necessary to decide not to climb it meant for some pretty precarious situations. He didn’t seek out affection or comfort when he was hurt, he wanted to be alone. He didn’t want to hug, or kiss or love on anyone. He refused to sleep, often not falling asleep until well past 2 am only to wake again by 7 and, unfortunately, he wouldn’t stay in bed and refused any sort of rocking etc. So we were “on” all night trying to keep him out of everything.
I could go on and on. He “escaped” all the time, at 12 mos. Bath time was horrific. Screaming and thrashing. Often we would end up getting a bath as well, having to step into the shower with him to get him bathed. Then there was the eating of all things not food. I can’t tell you how many times I’ve called poison control. For the record, Desitin won’t kill you. Neither will most shampoos and lotions and soaps. Chapstick is fine to ingest, and lipstick makes for wonderful diapers. There was also the smearing. Turning my back for five minutes meant every smooth surface in the kitchen would be covered in jelly, or peanut butter, or whatever other thing he could get ahold of. All of the time through this I kept hearing from people who didn’t have to live in this house with this child “It could be worse.”. And they were right, it could be, but this was bad enough.
Schooling has been difficult. He has fine motor delays and sensory issues to writing will bring about screaming and thrashing. He has some auditory defensiveness so meal times can be hell. The sound of people’s fork and chewing will drive him to even more screaming. We’ve not had a peaceful meal in seven years. But, it could be worse.
We’ve had family members just tell us to give him a good spanking, that’ll finally teach him. Right. Because we’ve not already tried every, single trick in the book. Traveling is exhausting. We are en pointe the entire time we’re away making sure that we know what he’s doing, where he’s at and how his tolerance level is. We just can’t deal with the screaming when not in the comfort of our home very well. Not to mention the lack of judgement he has, which makes being in other people’s homes quite challenging. He doesn’t have the verbal filter, or the impulse control needed to keep out of things he shouldn’t be in. But, it could be worse. The compassion that familiar people show towards children of friends with special needs is not always present when dealing with our child. There have been explanations galore, but it’s hard to see, or maybe admit, when you’re related, that there is an actual problem.
We now have a diagnosis. PDD-NOS. He’s a brilliant kid. So incredibly smart. He’s got great promise. He’s come such a long way in such a short time. On a good day he can bathe himself, he will take himself out of the room at dinner time to go eat in a quiet place by himself. He will allow us to hug and kiss him. He even hugs us!! School is a constant battle, but not one I think the public system would be willing to mess with.
Could it be worse?
absolutely.
Is it without challenge?
no.
Not for him, or ourselves.
So, if you’re ever tempted to look at me, or any other parent, and spout from what you believe to be your infinite wisdom about how much worse life could be, do me a favor and go ahead and smack yourself, so I don’t have to. You have no idea what you’re deeming “not bad enough”.
Peace and Quiet 