Funny thing is I actually had a fantastic afternoon on Saturday- hanging out at my dear dear friends house, her daughter who is friends with Megan, my Megan and Sarah.
It was clear Ty needed to be HOME, and needed pretty much everyone else GONE!
back to a divide and conquer sort of situation, but that's okay-
I had a nice afternoon calmer than calm which was lovely and needed, the girls had a great time with us, and Brian and Ty also had a fairly descent afternoon- Ty slept a lot, but having a quiet house
allowed him to catch up!
Ever have those days where you know something is wrong with your child, nothing you can actually pin point, but things are just so different, you feel so helpless!
This is what we are experiencing with Ty right now, something isn't right with him-
and it's so hard to say why- we are used to his challenges, we are used to tough days
but this is different, both Brian and I see it
and he just is not able to tell us anything that is going on with his body!
Is he in pain, (more pain than maybe he usually is?)
He has been complaining about his throat ever since his procedure- which we know they put a breathing tube down, for ventilation since he is under general anesthesia
and we know the pros and cons blah blah... but in 5 years, he's actually never complained about having the sore throat they talk about
and it's gotten better he says, so it's so hard to determine if that is causing him more pain than usual?
But he certainly isn't himself, and believe me, not in a good way- it makes me feel so sad for him-
We don't know what to do to help him- and he is absolutely so unhappy and miserable- everything is causing him to meltdown and become aggressive!
This morning he did come crawl into bed with me to go back to sleep
which was very nice... I love when he's sleeping- he seems (usually)
so peaceful and content!
Here is a picture of what he made for himself this morning- he said "dad didn't buy any cinnamon raisin toast
so .....
love that he improvised... and this is what he made
which he always makes about 10 x more than he actually ends up eating- so out of the 3 pieces of toast, you can see he ate almost one- and the rest is left
But this is how he is now, taking a much needed nap
I just pray that when he wakes, he feels more himself!
He even will say, he doesn't quite have his appetite back
so maybe he also recognizes something is going on, but he just isn't able to express it!
This is where functional language is soo so so so so so important
without it, behaviors will continue!
With functional and expressive language, others understand!
who cares if he knows everything about dogs, or dinosaurs, or every model of John Deere Tractors
if he hurts and can't properly tell us, or if he's sad or angry or frustrated
and no one is responding to him because WE DON"T KNOW
this is key to living is being able to express your needs and wants
and although he has WORDS
very rarely (because we are constantly working on it, and sometimes are better than others because his cup is only half full and not 3/4 full)
but very rarely is he able to say "I don't like that, I don't want to do that, please stop, please don't make that noise, that bothers me, that is frustrating me, whatever.......even when he likes something, it's not as easy as him expressing it- in fact, sometimes he over reacts negatively, because he doesn't know how to enjoy the moment of something he likes!
Communication is hard, words are easy, expressing and being understood
is hard!
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