Discrimination of special needs within church community...
If you think that your special needs child is discriminated against outside in the system...think again, it even happens within the church community.
Totally nonplussed at some of the attitudes displayed towards our Down Syndrome son, right here within our church community.
Typical to his syndrome he loves to express himself and is rather a ham when in public. For some time now, our younger kids (lower grades) have been helping with making the meal announcements when their respective father (guys only thing) is up on his turn to do it. It just entails saying something like: "Any announcements today"...and then after taking the announcements from various individuals saying ..."good meal"...or something to that effect. ..and everybody claps....my son simply loves to do this when his father's turn is up...innocent and a rather petty issue you say...and yes it is. He has gotten quite good at it and since he is a good copycat, does it quite well sometimes...
Well it so happens that today after church...my husband and myself were accosted by somebody who will remain nameless and soundly "told off" like we were little kids...not the veteran members of this community that we are..no respect, no consideration for our circumstances...and told that it had been made a matter of prayer and that it had been decided - by the powers that be - not to let children do this even when accompanied by their father or another male adult.
Reason: "we cannot have a child rule over adults...and that is what this is doing, it is making the child have some kind of an authority over all the adults in the room..."
Whatever happened to the scripture which says: "and a little child shall lead them?"... Is 11:16
So I guess this means that these people are intimidated by a retarded individual..because in some way this child (my son) is having some authority over all the adults?...go figure!
This is not only an absurd, narrow-minded and petty posture, it is downright discriminatory and would be almost laughable, if it weren't a sad reality...
As the mother of a retarded son - and I use the term in its original sense of:
verb |riˈtärd| [ trans. ]
delay or hold back in terms of progress, development, or accomplishment : his progress was retarded by his limp.
ORIGIN late 15th cent.: from French retarder, from Latin retardare, from re- ‘back’ + tardus ‘slow.’
not in the socially "accepted" abusive sense...
- I am very sensitive to positions people take towards my son that are outright discriminatory and narrowminded. Have these people any idea how many countless hours and elbow grease, parents of special needs kids have put in and advocated to HELP ABOLISH this mentality...and I am talking about out there...of course this does not happen within the Body of Christ right? hummm...well.... think again!
Maybe I should have terminated the pregnancy (which had been suggested by one of our doctors)...you know, just to avoid the "hazzle" of bringing up a special needs child into our midst....yeah that would certainly have avoided the inconvenience and embarrassment of having him around as he grew up.
....As a society, we prattle on about equality,
diversity and "access." The notion of
inclusiveness rules the day as long as we're
not talking about people with an extra
When Down syndrome is thrown into the
equation, suddenly our high-mindedness
For years, advocates fought to have people
with Down syndrome brought from the
shadows of institutionalization to their
rightful place in our communities and lives.
Lately, though, there are fewer and fewer of
them to bring into the light.
Why? Because many in-utero Down
syndrome diagnoses result in abortion. The
numbers don't lie: When it comes to people
with Down syndrome, they're considered
defective. The message: We'd rather not have
Good for Palin for standing up to the
pressure from the medical community, which
almost always recommends termination of
Good for Palin for making the statement that
needs to be made much more often: Genetic
discrimination against people with Down
syndrome must stop. Now. No excuses.
DS individuals are notorious for having the "performer" streak in them, they like to act out what they see and hear, they are for the most part, gregarious and outgoing, shaking hands, introducing themselves, etc. and sometimes displaying affection in ways that might be offensive and embarrassing to others....like wanting to hug and kiss everybody in the room.
DS individuals can be very unpredictable
and that is what embarrasses folks who take the discriminatory stand....they don't want to lose face, they don't want to look bad in front of visitors....they don't want the community to look bad....they don't want their social facade to be marred...so let's not allow a mentally challenged individual presume to take the authority over adults by making - otherwise - innocent announcements....
DS unacceptable behaviors, for the most part, can be addressed with repetition of what is acceptable and what is not.
I can do that and have no problem with that...but to be told - besides being told that I am a "bad parent who can't control her son" - that my son cannot get up there with his father or another adult male and make a few low key proclamations is absurd...and yes....discriminatory...or whatever you want to call it.
This is not unacceptable behavior IMHO....it is just normal behavior for an individual who likes to "perform" as most Downeys like to do....so...
is that a crime now?
Most of the time he has everybody in stitches with his antics...
...so you have a problem with being made to laugh?
Laughter is good for you...the more the merrier I say...I don't laugh enough...
We are so stuck in our own staunchness, old fartiness, stuffiness.... or whatever adjective is appropriate in this case.... :)
As another Downey parent and friend of mine says:
I decided to put my son on cutting edge and somewhat controversial supplements because I had read the literature on what would happen if I didn't...I didn’t know what the possible complications
of long term supplementation were. But I did know what the complications of untreated Trisomy 21 were. That information was stressed to me as the “reality of Down syndrome” and I was expected to accept it:
Inability to carry on a conversation
You see, I knew what untreated DS was going to look like. It was stressed to me that this was the 100% probability of how M was going to turn out. As an alternative I saw a possibility of slowing or stopping some of that negative progression. That is why I chose the risk of supplementation.
Parents today have the same choice. You know the literature. You know what untreated DS is supposed to look like. If you are not sure, go to a group home or other home where you can spend time with DS adults who were untreated all their lives. Get to know the people. Get some recent statistics on the average age of death for someone with DS. It is early. Premature. Not a full life. It is possible that you can interrupt some of the negative prognosis. Maybe you can extend health and make a longer life possible. You get to make the risk/benefit decision.
......So, yes!... I did it 'cause I wanted my son to be
"smarter"...and he is...he knows what's going on around him, he knows when people don't like him...he is smart enough to he warms up to guys especially who give him time and accept him like he is..and actually steers away from those who have an obvious problem with him...such a smart kid, ha, ha.
I guess all this venting is because I was naive enough to have expected more acceptance and understanding within the church...and this is not the case, unfortunately there are still those who cannot let go of their stereotypes concerning handicapped individuals....who are unwilling or unable to "bend their self imposed rules" as it were...and let a special needs child get some slack...OMG... no, no, no - can't have that..."let's not upset the apple cart"...one must save face at all costs, the "show" must go on...
It is amazing to me, when those who have no idea whatsoever about what it is to educate and nurture a special needs child, presume to know more than the parent and actually correct them in matters of parenting when they would not be able to walk even a few inches in that parents shoes...
You know what the funny thing about all this is? Oh the beauty of Down Syndrome!..he could care less, he thinks its great, he thinks its grand, he loves the attention, he loves everybody, he has a good time, holds no grudges, I wish I could be more like him!!
He does not need fixin'...it's us who need the fixin'...lets get rid of those stereotypes....
I wonder if my son will be allowed to make announcements when he turns 21?
Well...stick around for another 10 years and I'll let you know! haha....
If you don't like my position...well...SHOOT ME..and do the same to my son 'cause that is the only way you're gonna shut me up...
Ok, am getting off my soap box now...
Have a grand day...I plan to...Remember: "Don't let j.... ruin your day"...(hint: rhymes with "perks")
...humm...isn't there a book out there called that?
Thanks for listening.