Staring into the dark

There are moments that every parent looks at their children and see just how much potential and hope and bright futures your child has before them. But as a parent of a special needs child, there are moments that you stare into the dark. You have no idea what the potentials really are and how far your child will succeed. You have no idea if they will ever be able to live a "normal" life and do the same things that peers their age will get to do. There are moments when you feel hopeless and you choke back with every ounce of strength you have left in your body the tears that want to pour down your face.

We were having an "off day". "Off days" en tale of multiple meltdowns, eventually not only by my son, but by myself and my husband as we reach the points of not knowing how to handle him anymore and we loose our patience. These are the days that nothing you say seems to register and no one has any patience and I am asked for food as I literally scoop food onto his plate in front of him... Today was one of those days... After multiple meltdowns that also coincided with tantrums over cleaning up toys, my son climbed into bed and took a late nap. It was a honest relief and break.

He woke as we were starting to eat dinner (we had his plate on the counter waiting for him) and he came downstairs looking sleepy. He stood there for a few seconds and we saw as he then began to pee himself with no regard to what was happening. My husband was first to jump out of his chair and yelled to get to the bathroom but it was too late as he carried our son leaving a trail of puddles along the way....

I blame myself for it. During the holiday/winter break from school, I cancelled my son's therapies for a week. The state has been having budget cuts continuously, and one of the ways that they are trying to trim their budgets is to cut back on people's therapy hours that the state is willing to help cover the costs for. My son has been doing very well with his goals, so much so, that I am worried they may cut back on his therapies. Last year when winter break came along he regressed so much without being in school and his therapies and I wanted to see if this would happen again. If it did, I was going to log it so I had written proof that I could use to rebuttal with if they tried to cut his hours. No speech, no Hab-M, no occupational, no school.... I expected his patience for things to decrease and for him to lash out at peers instead of using words or for him to have sensory seeking issues to where he was "rambunctious" as my grandmother would call it. These did happen but so did some other things we weren't expecting.
His patience had depleted and he was continuously begging for food or drink as I would literally pour it into his cup in front of him. He would meltdown anytime that he thought he was alone or that I would leave to run an errand he would meltdown. By the end of the week we would start having screaming fits while going potty just to make sure I was still downstairs with him. And by Monday he was having accidents (he has been in "big-boy" underwear since the weekend of his 4th birthday and potty training had been an ongoing goal for over a year before we thought he mastered it). So there was my proof, he needed to keep his therapies.

Despite how many times my husband reassures me that its not my fault by cancelling his therapies for a week, in the back of my head I still feel it is....

I took my son upstairs after have him strip out of the pee soaked clothes and showered him off in his bathroom. He cried as he usually does in the shower, more sensory issues, and I just kept reassuring him that it (the water in the shower) wouldn't hurt him and was just like the splash pad or a big sink, as I helped clean him off. He cried and I asked if he knew he had to potty? and he said he "didn't know he had to go potty..."

As I helped him dry off and get clean pajamas on I told him that even though mommy and daddy get upset sometimes (referring our reaction to the peeing on himself and the floor), that we still love him very much. As I tell him this I am able to get him to "look at me". We make eye contact but he isn't actually looking at me. It's just blank as he is in his own world in his own head again and I am left staring into the dark of his eyes once again...

These are the moments when you feel helpless and you just want to cry and scream to the all mighty of how unfair it is, how you just want your questions answered...Will he be able to live a normal life, how far are his actual potentials, just why? Why!? And then you pick up your child and hug him as you once again reassure yourself it will all be okay....