When you become a parent, it is part of your responsibility to know your child. Know when things just aren't right, when they are sad, scared or upset. You just learn these skills.
When you become a parent of a special needs non verbal child, you have to know the same stuff above, but you also have to learn the "feel" of your child. His movements, his facial expressions, the way he holds his body. You have to know this child more than you know yourself basically.
When something comes up that is just not the "normal", alarms go off. Sometimes they are false alarms, and sometimes those alarms caught things in time. Regardless, that alarm goes off, and there is instantly a knot in my stomach and tears in my eyes. There is that fear, that horrible gut wrenching fear, that there is something else wrong with your child.
When the alarm goes off, you react and you react quickly from fear. Then begins the guessing games. Because he is non verbal, and his age (3) he can't answer you with any certainty yet on what the issues are. It sucks. It more than sucks.....it sucks big goose eggs! the whole time you will have this knot, and even after all the tests and the comments of "I'm not sure...." you will still always question.
About two month ago, Daniel started with gagging (right after being weaned from his anti-seizure meds). Immediately I figure its because the drug was stopped. But no, doctors say its reflux. Daniel has never had reflux or thrown up in his life until these episodes (and we didn't change anything but the medicine) so they put him on Reflux meds. It seems to have helped a little, except in the morning when he is ready for another dose. So maybe it is reflux, and maybe it isn't.
About 2 weeks ago, Daniel started with these things we call "startles" (you see little babies do this sometimes like they get the sensation they are falling). He's had these before and we've had EEG and they say they aren't seizures (at that time) so we go through these phases where he'll have these startles for a week or so whenever you lay him down. We generally just work through them. Well now he is having them a lot at night when he is sleeping and his arms flail out and he wakes up crying. Multiple times a night. Not good for the sleeping hours!
Two days ago we notice that Daniel has very sweaty, clammy hands and feet. (Never had this before that we know of) he isn't running a fever....can you guess? Nope me neither but don't look it up on the Internet cause it could be a million and one things, some very scary. And when I look these things up on the Internet and I see that its not very common, what would be the odds?
Well crap, what were the odds of a child getting Infantile Spasms (1:6000)? Or the odds of having a rare brain malformation (when he was diagnosed there were approximately 60 cases known in the U.S.)? What are the odds of a child having Spastic Quad CP without having a traumatic brain injury or a difficult birth(1:1000 full term child)? Pretty Frickin' Odd!!
So when I read that something is odd and not common.....well you do the math. I've got one child who has 3 different things that aren't on the common side.
Now whats our chance of having something else that sucks? Pretty frickin' good.
Of course our odds for winning the lottery aren't as good! Of course.
So, I guess what I'm saying is, as a special needs parent......if you're a special needs parent and reading this, when does the anxiety stop? When do you get to live without fear that something else is going to happen? When do I get to get this knot out of my stomach?
Know your child inside and out, because doctors will guess as much as you as to what is wrong. You are your child's only voice.
AMENDMENT: Also forgot to add in there that he has also started grinding his teeth (that aren't in great shape anyways! AND we are scheduled for a 30 minute EEG tomorrow!
On a different note, watch this video. it will amaze you, and it gives me so much hope for Daniel's future.
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