To those who think they 'know' what my life is like becuase they've 'met' a person with autism... to those who think they know because they know me, and have met my children... especially to those who've yet to have children of their own...
There is a point when a child is only 5 weeks old, when the new has become painful. When you're woken by a cry for the thrid time that night, and it's only midnight. When you feel like you will never be allowed to sleep again. When you think bright yellow cottage cheeze-looking poop is the worst thing you have ever smelled in your life and you don't think you'll ever get away from it. There is that point. Take heart in the fact that this, all of this, will pass. Eventually it will end. Feel blessed.
Now, when you are sitting there at 2am, trying to think of this, think of me. Think of my friends who have children with disabilities. Think of all the smart mouthed know it all crap you said to us. Then realize, truely realize that this point will pass for you, but it will never pass for us. For us it is forever. It does not end. As our kids grow older one issue is simply swapped out for another. The sleepless nights don't go away. We know that newborn baby poop is not the worst smelling thing in the world. We don't hold tinly little bundles who can't stop crying and we don't know why. We hold fully grown bundles who can't stop crying and can't explain why.
In that moment, picture in your mind a tricycle with a cute squeeky little horn. Picture yourself sitting on that tricycle tooting that horn. Then look up. I was the armored semi truck in front of you. I was the one who your were sqeezing your little horn at while insiting the road was yours. Now realize exactly how close you came to getting squished, and be thankfull.
Be very, very thankfull.
Why, yes, I do believe that sums it up quite nicely.
ReplyDeleteNone of us can ever gauge the issues that another has to deal with. Some have the "armored semi" of issues to deal with while some have the squeaky trike. Some, cannot handle the squeaky trike, but they have their spouse's minivan with the transmission that goes out while they are on their way to the first job interview they've been able to get in six months, on the same day some nice helpful individual slashed the tires on your car, (which is why you are driving the spouse's minivan) and their spouse is disabled due to no fault of her own and you are trying to cook, clean, go to school, find a job while being very overweight and over 45, in this economy while raising a hyper 5 year old.
ReplyDeleteAll credit to those parents of disabled kids, that have to deal with the pain, the struggle and the condescending looks from parents of "perfect" kids. For them, they can only get what they can grab in life because they were given a harsh weight to bear.
To some, even a quarter of it is just too much. I just can't deal tonight, sorry for whining.
The foul smelling poop is because of gastrointestinal issues ... autistic kids, and the developmental population, experience a lot of (intestinal) pain. Since their neurology is undeveloped (and may never finish developing) they can't determine the location or the cause ... so they SCREAM AND CRY. As they get older maybe someday they will locate the pain in the intestines.
ReplyDeleteWatch the diet ... change formulas ... find pain-killers ... soothe the tummy ... when they cry incessantly THEY'RE IN PAIN.
I forgot ... give probiotics! Mother's colostrum and breast milk contain a number of beneficial things besides nutrition, one category of which is PROBIOTICS ... especially lactobacillus, but there are many others and each child is probably different in its needs. Check out PROBIOTICS and DIGESTIVE ENZYMES.
DeleteDave, your replies are a prime example of riding the tricycle. The narrow mined bullshit advice that people tend to give us. You assume that there is only one answer for any given problem and that you know exactly what that answer is.
DeleteWell, guess what? My autistic kids can actually relay what ales them once they have calmed down enough to do so. They do not have gastrointelinal issues. They have emotional regulation issues and cognative problems that send them into tailspins. More often than not, when my most severely affected child is screaming and crying and can't relay (at the time) what's going on it has to do with a social or external sensory issue. Think Rainman at the airport.
And please, don't assume that because you know the answer for one individual with autism that you the answer for them all. That is EXACTLY what my post was about.