There are random times in our lives when we feel at peace. We're lucky to get that moment once in a lifetime, once a month, once or week or even once a day.
Despite the choas that is the boys' and my life, my favorite moment of the day is at and after bathtime.
I don't do the conventional bath with my boys. After all, we are not the conventional house. They HATE water, well my youngest does and my oldest...he's come to terms with water. Just don't get any on his clothes!
So, bath time in our house has to be creative. Yesterday it was a tub full of Transformers. My oldest who's OCD/anxiety meds aren't working up to par just yet, insisted that it had to be "one Transformer of every kind". I'm sure that in his head, he knew the meaning of that, but it was lost all together on me. We still made it work though. Today was glow sticks in the bathtub day. We pulled the shades, shut the lights off and had fun!
I never give them baths at night anymore. There's just too many things going on for them. So, like any unconventional house, we break the rules. They get their baths before lunch!
Yep, that's right, they're thrown in the tub, right before they get the chance to wear more food than they eat!
Why do I do this? I actually get asked that a lot lately. And here's all the reasons why:
1) Because I can.
2) Because at night, they know time is limited and they don't want to stop playing to hop in a tub. They inevitably fight with me and that ramps them up even more before bed.
3) Because there is no rush to their water play before lunch. There is no rush to meet a looming bedtime or medicine time. They can just play until they're all sorts of pruney! (I'm pretty sure that's a word!)
4) Last, but not least, and definitely THE most important reason, because I learn from my kiddos. Especially my oldest who can be more vocal about why he needs things a certain way, or why something works for him today, but not tomorrow.
When I started homeschooling, I thought it would be easy. I'd follow a set curriculum, we'll peter along and it will all just take care of itself. What I didn't count on was how their special needs would change everything about how I learned to teach them in academics and in life.
Bath time before lunch allows them to decompress from the morning. Be it lessons, doctor's appointments, etc. Then we have this quiet, cuddle on the couch session before lunch. We all truly enjoy one another's company and we all in that moment get along. There is no sensory problem that needs to be fixed, no OCD toy issue that is screaming at one or the other from another room. Dishes and laundry become invisible for those brief moments and time sort of stops. I take in every giggle, every smell, every gesture and commit it to memory. In those moments, whether my oldest is ticcing or my youngest can't seem to say what he means, all of their needs, all of the chaos and the outside world disappears. I wish those kinds of moments could last forever.
Friday, January 10, 2014
Wednesday, January 8, 2014
Confessions of TS mom
I can't complain really. I mean in the grand scheme of things it could be worse - a lot worse. I KNOW this. Down to my toes I know this, but as his mom...it's killing me.
He now says that his hearing in one of his ears is going down sometimes. It's the reason he quit wearing his aids and we fight about him doing so every morning. He blamed his aids for this happening. I knew it was his sniffing and snorting tics. His rapid fire and forceful succession of them, would begin to mess with his ears. I don't know if this will have any long term affects on his already slowly diminishing hearing or not. I can't even decide whether to call his audiologist or not.
He's not beating himself, much like he used to. Slamming his chest with a closed fist until it was purple nor is he punching his head like some horrid wrestler you might see on T.V. He's not crying to hold back the coprolalia, screaming because he says it hurts. So, I can't complain....exactly.
When he was about 4 or so, his Tourette Syndrome was so severe that no one knew if he'd be able to truly function in daily life. Then he was put on Orap and Requip and although he was ultimately removed from them, it's like someone flipped a switch! His tics dropped so dramatically and I was able to see his beautiful blue eyes for the first time in years. And this wonderful perk lasted all these years and I've felt blessed to see his smiling eyes.
So, as the last several months have agonizingly crept by and I've watched OCD slowly creep back into his life, his meltdowns become more and more aggressive, and slowly, but devastatingly, watched his tics began to take control of his life once again, my heart has shattered into a million pieces.
He's unable to feed himself a majority of the time now, he's ticcing too much. He was unable to go to the bathroom at the doctor's office and dang near wet himself, because he had to finish touching the door handle the appropriate amount of times and in the appropriate way, he needs help in the bathroom again because he's unable to stop moving long enough to do it the proper way....I could go on, but I won't.
It's this level of ticcing and OCD and everything else that breaks me. I would take it all from him in a heart beat if I could. Nevermind my pain, frustration or anxiety, I do it just to give him some peace! It's awful being so helpless.
I've called his neuro, whom we've not seen in months and months and the soonest we could get in was the end of this month. Again, I KNOW the wait time could be a lot worse, but it's the helpless waiting and watching that is killing me. I have to continually remind myself, that in his eyes, he knows no different way of life. That while yes, it's all frustrating at one point, this is how he lives and while I'm dying at every little thing, he's such a hero that he doesn't even bat an eye, he even comforts me when he might see me upset (though he never knows why)!
I can only hope to have such bravery and nobility in single moment, not every moment of every day. In this way I KNOW that my children were a gift given to me, to teach me humility, sacrifice, patience, understanding/compassion and above all else unabashed, unbiased acceptance. I hope that I will grow to be worthy of their lessons and that they can understand while in the interim my heart breaks for them daily.
He now says that his hearing in one of his ears is going down sometimes. It's the reason he quit wearing his aids and we fight about him doing so every morning. He blamed his aids for this happening. I knew it was his sniffing and snorting tics. His rapid fire and forceful succession of them, would begin to mess with his ears. I don't know if this will have any long term affects on his already slowly diminishing hearing or not. I can't even decide whether to call his audiologist or not.
He's not beating himself, much like he used to. Slamming his chest with a closed fist until it was purple nor is he punching his head like some horrid wrestler you might see on T.V. He's not crying to hold back the coprolalia, screaming because he says it hurts. So, I can't complain....exactly.
When he was about 4 or so, his Tourette Syndrome was so severe that no one knew if he'd be able to truly function in daily life. Then he was put on Orap and Requip and although he was ultimately removed from them, it's like someone flipped a switch! His tics dropped so dramatically and I was able to see his beautiful blue eyes for the first time in years. And this wonderful perk lasted all these years and I've felt blessed to see his smiling eyes.
So, as the last several months have agonizingly crept by and I've watched OCD slowly creep back into his life, his meltdowns become more and more aggressive, and slowly, but devastatingly, watched his tics began to take control of his life once again, my heart has shattered into a million pieces.
He's unable to feed himself a majority of the time now, he's ticcing too much. He was unable to go to the bathroom at the doctor's office and dang near wet himself, because he had to finish touching the door handle the appropriate amount of times and in the appropriate way, he needs help in the bathroom again because he's unable to stop moving long enough to do it the proper way....I could go on, but I won't.
It's this level of ticcing and OCD and everything else that breaks me. I would take it all from him in a heart beat if I could. Nevermind my pain, frustration or anxiety, I do it just to give him some peace! It's awful being so helpless.
I've called his neuro, whom we've not seen in months and months and the soonest we could get in was the end of this month. Again, I KNOW the wait time could be a lot worse, but it's the helpless waiting and watching that is killing me. I have to continually remind myself, that in his eyes, he knows no different way of life. That while yes, it's all frustrating at one point, this is how he lives and while I'm dying at every little thing, he's such a hero that he doesn't even bat an eye, he even comforts me when he might see me upset (though he never knows why)!
I can only hope to have such bravery and nobility in single moment, not every moment of every day. In this way I KNOW that my children were a gift given to me, to teach me humility, sacrifice, patience, understanding/compassion and above all else unabashed, unbiased acceptance. I hope that I will grow to be worthy of their lessons and that they can understand while in the interim my heart breaks for them daily.
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