I just was fiddling around in my admin for my blog, updating & changing some settings, and I realized that I had some people contact me over the past 6 months or so that I was never aware of! I feel terrible because I never responded since I never knew these people had taken the time to write.
First off, I’m so sorry. I don’t know why I didn’t get them, but maybe it’s because they were marked to email me directly and the email address was wrong. Hopefully, I’ve corrected it now.
Secondly, I wanted to address some issues that came up in two of these emails. These two readers were appalled with my complaining, whining and poor parenting of Henry in particular. They apparently are of the mindset that all I do is complain about Henry and that I do not see him for the blessing he is. That I need to stop treating him like he has Down Syndrome and just treat him like my other kids and expect the same from him. And that I’d better get off my big, fat butt and take the pacifier away and get him potty trained.
Let me say that if I have been primarily talking trash about Henry, I apologize. I use this blog as a forum to work out what’s in my head, what struggles I’m having, vent about things that are going on and sometimes to let off steam. I also use it to rejoice about awesome things that have happened, to try to spread awareness about Down Syndrome and to talk about my life day-to-day. I’ve always said that my main objective here is to be honest. If you’re looking for a blog where everything is rainbows and unicorns and I talk about all the amazing things I’m accomplishing and how awesome and perfect my life is, you’ve come to the wrong place. There are tons of blogs like that, if that’s what you want. I’ve never done that and I will never do that. You can count on honesty here. If I’m having a hard time or had a particularly trying day, I will share it. If Henry reaches a milestone or something fantastic happens, I will share it. If Henry’s behavioral issues make me want to take a hostage, I will share it. If you consider that “complaining” and “whining”, perhaps this blog is not for you. I consider it the truthful sharing of one mother’s journey. I don’t claim to be perfect and I couldn’t even if I wanted to be. I am doing my best, however, and I hope most of you can see that.
In regards to the specific addresses about Henry? I have 4 words for you. YOU DON’T KNOW HIM. Henry is not a typical child with DS. He is not an atypical child with DS. He is, I believe, I child with both DS and autism. At this point in time, Henry cannot be reasoned with. Henry cannot understand time out. (and to the person who suggested strapping him in a chair? Hell to the no.) Henry has a pacifier because his sensory issues are so overwhelming that if he’s not being tended to one-on-one, he has to have something to meet those needs. If he doesn’t have the pacifier, he jams both his hands in his mouth to the wrist (this is literal) and spends the entire day with moist, creepy hands and face – spreading germs everywhere and setting himself up for the worst chapping scenario in the history of winter. Without the pacifier, I have to keep his hands slathered in Vaseline to prevent them from cracking and bleeding. The pacifier is on a strap. He puts the pacifier in his mouth and then uses the strap to stroke his face, arms – whatever he needs. His sensory needs are through the freakin’ roof.
And potty training? Excuse me why I pee myself laughing. Henry has absolutely no awareness of his elimination functions at this time. I am 100% of the belief that you cannot potty train a child until they are aware of what’s going on down there. Otherwise, YOU are the one who’s potty trained as you put the child on the toilet every 30 minutes, hoping to catch him/her at the right time. I have tried. He simply doesn’t understand. He will get there, but at this time, it ain’t happening. And for anyone out there to second guess what’s going on in my household with children they’ve never met is so arrogant, I can’t even form words for it. Let me repeat it: YOU. DON’T. KNOW. HIM. Those who do understand everything I say and every struggle I’m having.
For those readers out there who felt that they needed to chastise and upbraid me, I simply ask that you don’t judge till you’ve walked a mile in my shoes. Just because what you order me to do has worked for child X that you know or met or heard about means 100% of nothing for me and mine. I pray that you will never be blessed with a child like my Henry because you will probably destroy him in your single-minded attempt to make him/her behave the way you “know” is right.Tweet